The THYROID Thread

[KAMLEM]

It's very frustrating that it can take so long to get the meds right. My dr. upped mine and I went for bloodwork last week and my TSH is at 26.83. I guess that explains why I still feel so horrible. She doesn't want to up it too quickly because too much at once gives me palpitations, I can't sleep and I have awful anxiety.

frdeb1999-Hopefully your husband will feel better soon. I just had my thyroid removed 4 months ago so I think I have quite a ways to go.

[frdeb1999]

Thank you KAMLEM. And hopefully yours will slowly improve too. It's a tough road at times. Just don't be too hard on yourself and take things slowly. I keep telling my husband that. But he gets really upset when he forgets things or has bad days. And I always remind him that it will improve and just to take it one day at a time. :)

[teacups]

Just my own experience: I had Graves when I was 13 years old. Took the meds (PTU) for it until I was 19 and felt good. For some reason a doc wanted to do RAI to burn it out and I did it. Young and stupid? I think so. Now, I'm 40+ and would NEVER do that again!!! I was fine for several years and then all went haywire. Meds dont work right, test dont work right, I certainly have not felt right in years. Id NEVER do the RAI if given the chance to go back.
In my experience doctors understand Graves fine, until they screw things up. Then Graves becomes a thing they dont understand. I feel cheated that they didnt paint the whole picture for me.
My advice is simple: Research EVERYTHING before you do it.
Know your options and which sounds right TO YOU.
Know what tests mean and how to read them, and get copies of yours.
Do not accept "everything is in the normal range" until you see it.
It is your body after all... you will have to live with this (whatever you do) forever.
Good luck to all.
Remember... I give this advice without standing to make a dime off it.
Can the doc say the same thing?

[rie'smom]

When you go to your doctor, please make sure if they're doing bloodwork, that they are doing a TOTAL T3 and T4. The regular thyroid blood test is not as accurate.

Also, if your Synthroid is not working for you, ask your doctor or find one who will prescribe Armour thyroid. Armour is made from the thyroid glands of animals. It was a miracle for me. I'd taken Synthroid and felt just as bad after taking it as I did before I took it.

I found a different doctor, he prescribed Armour thyroid and my life changed for the better. Most doctors say that the dose isn't as good or isn't as accurate as Synthroid but I'm here to say that every single person that I've asked has said the Armour changed their lives for the better too.

[jennz]

I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half! You're not getting generic are you?

Kamlem - did you mean your TSH levels were that high? (you typed TSG) Yikes! Are you sleeping 18 hours/day?

frdeb1999 - I'd be frustrated still feeling like that after a year too. Do you like the endo he has? Congrats on the clear scan! I always get nervous before mine. Is he taking his meds on an empty stomach an hour before eating and NOT taking generics?

The weight thing stinks - that's all I can say about it. I am sure some of it w/me is age but I really don't believe that's the biggest part (no pun intended!) when I hear the same thing from so many w/the same thryoid issues. It comes on easy, and is much harder to get rid of. Some of the things say they "increase your metabilism" always make me think "but my metabilism comes from my little pink pills...":confused3 I don't know how it can be increased but I DO know that a cold knocks me out longer than most people, and I think that's b/c my body uses some of the "stored" stuff to help while I'm sick and then has to "rebuild" after. I don't know if this makes sense...:laughing:

[rie'smom]

[QUOTE=jennz;28028960]I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half! You're not getting generic are you?
[QUOTE]

No, Armour is the thyroid medication that was prescribed for 100 years before they started the synthetic thyroid medications. It's made from the glands of USDA-approved grain-fed pigs. The thyroids are processed, dried, powdered, and compounded to produce Armour Thyroid tablets. Since the amount of thyroid hormone present in the thyroid gland may vary from animal to animal, the T4 and T3 are measured in both the raw material and in the actual tablets. This ensures that Armour Thyroid tablets are the same from tablet to tablet.
Armour contains both T3 and T4 which the synthetics don't have.

[jennz]

[QUOTE=jennz;28028960]I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half! You're not getting generic are you?
[QUOTE]

No, Armour is the thyroid medication that was prescribed for 100 years before they started the synthetic thyroid medications. It's made from the glands of USDA-approved grain-fed pigs. The thyroids are processed, dried, powdered, and compounded to produce Armour Thyroid tablets. Since the amount of thyroid hormone present in the thyroid gland may vary from animal to animal, the T4 and T3 are measured in both the raw material and in the actual tablets. This ensures that Armour Thyroid tablets are the same from tablet to tablet.
Armour contains both T3 and T4 which the synthetics don't have.

Sorry, I wasn't clear - I was asking frdeb1999 & kamlem. :goodvibes

[rie'smom]

[QUOTE=rie'smom;28029325][QUOTE=jennz;28028960]I used to take Synthroid and changed to Levoxyl and noticed a difference, they were also actually able to cut my does in half! You're not getting generic are you?


Sorry, I wasn't clear - I was asking frdeb1999 & kamlem. :goodvibes

sorry:blush:

[jennz]

No worries!;) Just curious - what did you notice different when you switched to the Armour?

[rie'smom]

I had energy. Before starting on the Armour, it took all my energy just to make it to 6pm when I would fall into bed. It was like being a zombie. My skin was dry, my hair breaking,my face puffy,all of the same symptoms and my doctor wouldn't listen.
When I finally found the right doctor, he gave me a checklist, he did a reflex test, and I was still hypothyroid. You know how doctors used to ping your knee and ankle? That was a test for thyroid function. Anyway, I feel like I have my life back and it's wonderful!

[frdeb1999]

Hi Jennz...yes we really like his Endo. We have heard so many horror stories about those who have one's that they don't like. So we were thankful to find out that we do. He's doing everything by the book and no he's not taking generics. Hopefully all will settle down soon!!

[KAMLEM]

Kamlem - did you mean your TSH levels were that high? (you typed TSG) Yikes! Are you sleeping 18 hours/day?
Yes, I meant TSH, I fixed it. I feel like sleeping 18 hours/day, but it's not possible! By 10:00 a.m. I'm having trouble keeping my eyes open at work. At lunch I go out to my car and nap. I'm in bed by 7:30, although not necessarily asleep. I look forward to Sundays because most weeks I don't have anything planned. It's sort of my catch up day. I actually get angry if something comes up on a Sunday!

To make things worse, last Sunday I had to take my mother to the airport and when I was in the parking garage I fell and sprained my ankle. Just one more thing. Crutches are very hard to use when your body is so weak!

I feel like I'm not living my life right now, I'm just trying to get through each day. Hopefully the meds will kick in soon.

[jham]

Hi, I just started lurking here last week when I realized my DD11 had an enlarged thyroid. I took her to the Dr. on Friday and just got lab results this morning. I don't have numbers, but they said her TSH is very, very low, T4 is elevated, T3 uptake is elevated, Free thyroxin is elevated, something about thyroid peroxidase and something else I didn't catch. She is hyperthyroid and I am waiting for the pediatrician to confer with the endochronologist and call me back. I just don't even know what all this means and I'm so scared for my baby girl. I'm glad this thread is out there. Thanks for listening.

[pakhowe]

I'm going this Friday to the Dr about the nodule on my thyroid. I was told he would do a biopsy but I was referred to an ear/nose/throat Dr. Should I be going to see an endo?

Thanks for all the great information in this thread. I now know I should ask for specific blood work to be done.

Are there any other things I should be asking about or having checked?

[KAMLEM]

I'm going this Friday to the Dr about the nodule on my thyroid. I was told he would do a biopsy but I was referred to an ear/nose/throat Dr. Should I be going to see an endo? I would definitely go to an endocrinologist, one that specializes in thyroids if possible. The thyroid is such a complicated thing, the ENT may not be familiar enough with all the issues.

My endocrinologist didn't do my biopsies, though. It was actually a different dr. in the hospital that did them (sorry, not sure what type of dr. that is).

Be prepared that the biopsy may not tell you anything. I had 2 and in the end I had to have surgery because they could not get enough information from the biopsies alone.

Good luck, if you have any questions feel free to PM me.

[rie'smom]

I'm going this Friday to the Dr about the nodule on my thyroid. I was told he would do a biopsy but I was referred to an ear/nose/throat Dr. Should I be going to see an endo?

Thanks for all the great information in this thread. I now know I should ask for specific blood work to be done.

Are there any other things I should be asking about or having checked?

I would definitely go to an endocrinologist, one that specializes in thyroids if possible. The thyroid is such a complicated thing, the ENT may not be familiar enough with all the issues.

My endocrinologist didn't do my biopsies, though. It was actually a different dr. in the hospital that did them (sorry, not sure what type of dr. that is).

Be prepared that the biopsy may not tell you anything. I had 2 and in the end I had to have surgery because they could not get enough information from the biopsies alone.

Good luck, if you have any questions feel free to PM me.

Definitely either see an endocrinologist or an internist who specializes in thyroid issues. I would not see an ENT for thyroid problems.

[DisneyMissy318]

Hi everyone...

I wanted to come back and post an update on DD (10) - she had her thyroid removed in early August due to the fact it was growing on the back of her tongue... they left a little piece in place - just so she would have some of the original gland.

We had a follow-up appointment a week after surgery and 75mg of Synthroid was prescribed - we DID get the generic (from what I'm reading - we probably shouldn't??)

Fast forward 7 weeks - blood test shows a TSH level of 118!!!!!!!!! DD GAINED 22 pounds since surgery!!!! I'm freaking out! I don't know what to do!! They upped the mg to 112 - with another blood test in 6 weeks. DD was home sick this week Tuesday and Wednesday with the worst stomach cramps - she was flushed and warm to the touch - but no fever.

From what I've read online and from what you guys have shared - it will be a long process to get her to a "normal" level.

We have a follow-up with the ENT surgeons next Tuesday. I think she needs to be referred to an Endocrinologist for her follow-up care (as opposed to our GP) - do you guys agree?

Any advice on what to do from here - as well as what to do FOR HER would be great! I didn't tell her she was having a reaction to her meds - maybe I should - this is my BABY - and I hate to see her suffer! Uuuggghhh!

[rie'smom]

Hi everyone...

I wanted to come back and post an update on DD (10) - she had her thyroid removed in early August due to the fact it was growing on the back of her tongue... they left a little piece in place - just so she would have some of the original gland.

We had a follow-up appointment a week after surgery and 75mg of Synthroid was prescribed - we DID get the generic (from what I'm reading - we probably shouldn't??)

Fast forward 7 weeks - blood test shows a TSH level of 118!!!!!!!!! DD GAINED 22 pounds since surgery!!!! I'm freaking out! I don't know what to do!! They upped the mg to 112 - with another blood test in 6 weeks. DD was home sick this week Tuesday and Wednesday with the worst stomach cramps - she was flushed and warm to the touch - but no fever.

From what I've read online and from what you guys have shared - it will be a long process to get her to a "normal" level.

We have a follow-up with the ENT surgeons next Tuesday. I think she needs to be referred to an Endocrinologist for her follow-up care (as opposed to our GP) - do you guys agree?

Any advice on what to do from here - as well as what to do FOR HER would be great! I didn't tell her she was having a reaction to her meds - maybe I should - this is my BABY - and I hate to see her suffer! Uuuggghhh!

Get her to an endocrinologist! I hate GPs for dealing with the thyroid. Why did and ENT do the surgery??? That, to me, would be like going to an endocrinologist for sinus problems. Please stay away from your GP. Thet almost always order the wrong thyroid blood tests!
Good luck to you and your daughter!!! Keep us posted.

[DisneyMissy318]

Why did and ENT do the surgery???

After reading your reply - I'm here in tears that I didn't do everything possible for my DD! Our town ENT discovered the thyroid growing on her tongue and referred us over to UVA (University of VA) to the director of the ENT program. Up until all of this - I didn't even know there was such a Dr. as an Endocrinologist! :confused3

I DO know that MANY doctors from around the country were consulted as what DD presented is a rare condition. Their course of treatment changed based on input from other Drs. who had done the surgery prior.

Based on how "excited" the ENT was I would say they didn't refer us due to the fact that they wanted to publish the surgery. I guess the good thing is that UVA also has an incredible Endocrinology Department and WE WILL be making an appointment there ASAP!

[rie'smom]

After reading your reply - I'm here in tears that I didn't do everything possible for my DD! Our town ENT discovered the thyroid growing on her tongue and referred us over to UVA (University of VA) to the director of the ENT program. Up until all of this - I didn't even know there was such a Dr. as an Endocrinologist! :confused3

I DO know that MANY doctors from around the country were consulted as what DD presented is a rare condition. Their course of treatment changed based on input from other Drs. who had done the surgery prior.

Based on how "excited" the ENT was I would say they didn't refer us due to the fact that they wanted to publish the surgery. I guess the good thing is that UVA also has an incredible Endocrinology Department and WE WILL be making an appointment there ASAP!

:hug: OMG, I am so sorry. I didn't mean you did anything wrong!!!!! :hug: It just makes me angry that doctors don't do referrals to experts!!!!

[DisneyMissy318]

Please... it's not you... I'm just upset with myself for not even asking the question. DD has a needle-phobia as well - which I hope she will soon grow out of - since this will be a regular thing for her life! I will be asserting myself next week - because I'm sure the ENT will want to do another blood test, but we just had one last week. I'm going to get a copy of the bloodwork and take it with me. It's just beyond time for me to accept what I'm being told by the Drs. as gospel!

Thanks for the hugs and advice!! TRULY APPRECIATED!!! :hug:

[rie'smom]

Please... it's not you... I'm just upset with myself for not even asking the question. DD has a needle-phobia as well - which I hope she will soon grow out of - since this will be a regular thing for her life! I will be asserting myself next week - because I'm sure the ENT will want to do another blood test, but we just had one last week. I'm going to get a copy of the bloodwork and take it with me. It's just beyond time for me to accept what I'm being told by the Drs. as gospel!

Thanks for the hugs and advice!! TRULY APPRECIATED!!! :hug:

Ask him to do a Total T3 and T4. It's the most accurate for testing thyroid levels.

[jennz]

Please... it's not you... I'm just upset with myself for not even asking the question. DD has a needle-phobia as well - which I hope she will soon grow out of - since this will be a regular thing for her life! I will be asserting myself next week - because I'm sure the ENT will want to do another blood test, but we just had one last week. I'm going to get a copy of the bloodwork and take it with me. It's just beyond time for me to accept what I'm being told by the Drs. as gospel!

Thanks for the hugs and advice!! TRULY APPRECIATED!!! :hug:

I just want to give a different perspective...I think an endo is definitely needed for ongoing treatment, my gp won't treat me for my thyroid, and he's the one who discovered the growth. (I'm fortunate that he sent me on.) DH works for and ENT group and they don't treat patients w/thyroid conditions but they do a lot of thyroidectomies. None of my endos have been surgeons. I had my surgeries done by a general surgeon. He was great and I liked him but I do still wonder if I had an ENT, who specializes in surgeries in that area, do them, if my parathyroids would still work and I wouldn't be spending hundreds on calcium replacement medication each month and would be able to throw up w/o having to go to the hospital. Knowing what I know now I would definitley have had an ENT do the surgery. I had an endo, oncologist, and surgeon. Now I'm down to just my endo.

Rie'smom - the Armour must have been like a miracle drug for you! I'm glad you found it! (as I KNOW you are :laughing: )

Kamlem - I feel for you! That is horrible. After 3 months I would think you'd be closer to "normal." What's your dose and what are you taking?

[jennz]

Hi everyone...

I wanted to come back and post an update on DD (10) - she had her thyroid removed in early August due to the fact it was growing on the back of her tongue... they left a little piece in place - just so she would have some of the original gland.

We had a follow-up appointment a week after surgery and 75mg of Synthroid was prescribed - we DID get the generic (from what I'm reading - we probably shouldn't??)

Fast forward 7 weeks - blood test shows a TSH level of 118!!!!!!!!! DD GAINED 22 pounds since surgery!!!! I'm freaking out! I don't know what to do!! They upped the mg to 112 - with another blood test in 6 weeks. DD was home sick this week Tuesday and Wednesday with the worst stomach cramps - she was flushed and warm to the touch - but no fever.

From what I've read online and from what you guys have shared - it will be a long process to get her to a "normal" level.

We have a follow-up with the ENT surgeons next Tuesday. I think she needs to be referred to an Endocrinologist for her follow-up care (as opposed to our GP) - do you guys agree?

Any advice on what to do from here - as well as what to do FOR HER would be great! I didn't tell her she was having a reaction to her meds - maybe I should - this is my BABY - and I hate to see her suffer! Uuuggghhh!

That's a pretty big jump in the level of synthroid...my endo has always said they don't want to go up to quick. But I don't know if that's just them or if it's standard, so I guess it's not much help.

I would say ditch the generic...although they are supposed to be in a certain "range" I have been told that range is too large for something like your thyroid, a small change can be huge. Make sure she takes it on an empty stomach too.

The TSH is HIGH as in no thryoid function! I would guess they were hoping that the piece of thyroid they left in would function and the meds would only be needed to supplement it - a better option if it works.

Unfortunately you do have to wait about 4 - 6 weeks to adjust to a new dose of the meds, I don't know if they explained it to you but the way it's been explained to me is your body stores it, so when you're very low it gives you a little and stores a lot and so on until the "store" is complete and then you get all of it. With your dd being 11 please get her to an endo! Just tell your ENT that you'd feel more comfortable with a specialist due to the complexity of the thyroid function and the metabolism and the fact that your daughter still has a lot of growing to do! Is what's normal for adults a normal level for kids? I know they can eat a horse and not gain weight and I sure can't! :) You probably want them to call an endo and get you in asap, no need to wait for the next blood draw. (FWIW, I have an appt in November and I just called to reschedule and they told me I'd have to wait until March - that's why I said you probably want them to call and get you in.)

Good luck to you guys! Post away here, this is such an odd disease in that it touches you in so many different ways and most people don't understand it, and most who do say "well you just take a pill and it's better right?":confused:

Sorry for my rambling post but I hope there's something in here you can use.;)

[KAMLEM]

Kamlem - I feel for you! That is horrible. After 3 months I would think you'd be closer to "normal." What's your dose and what are you taking?After having my thyroid removed, my endo started me on 112 mcg. I started feeling shaky, unable to sleep, anxiety attacks, so she reduced it to 100 mcg. She said that in the end I will probably need even more than the 112 mcg, but sometimes you need to work up to it very gradually. Since getting my bloodwork results last week, I am on 112 mcg 4 days/week and 100 mcg 3 days/week. I have a feeling that this won't be enough, but I don't want to increase it too quickly. I would much rather deal with the symptoms of being hypo than hyper. The anxiety was almost more than I could deal with.

[pakhowe]

I started methimazole this past Friday. I am not sure if it is helping yet. It feels good to be doing something though. You'll be getting your biopsy around the same time that I am getting my thyroid scan. We'll have to keep each other posted on the results.

I live in the Bridgton, ME. Where in Maine are you?

I know what you mean about feeling good to do something. I'd love to have some answers, any answers. Did you hear about your ultrasound? How did the scan go today? Hope all was well. I couldn't have my biopsy done today, I have to go to the hospital on Tuesday. I'll post again after I hear anything.

[dougsmom98]

I know what you mean about feeling good to do something. I'd love to have some answers, any answers. Did you hear about your ultrasound? How did the scan go today? Hope all was well. I couldn't have my biopsy done today, I have to go to the hospital on Tuesday. I'll post again after I hear anything.

I went for the thyroid uptake count and a thyroid scan yesterday. I have not heard the results yet. I had to be on an iodine free diet for two weeks prior to the scan. That was a lot harder than I thought. No dairy, no processed food, no bread unless you make it yourself, no eggs... I never realized how many foods were made with eggs, milk, butter... Five days before the scan, I had to go off the methimazole which the endo gave me for the hyperthyroidism. I didn't think it was helping at all until I went off it because my right eye has been swollen for the last four days. I am glad to start it back up and see if it makes a difference.

Good luck on Tuesday!

[jennz]

After having my thyroid removed, my endo started me on 112 mcg. I started feeling shaky, unable to sleep, anxiety attacks, so she reduced it to 100 mcg. She said that in the end I will probably need even more than the 112 mcg, but sometimes you need to work up to it very gradually. Since getting my bloodwork results last week, I am on 112 mcg 4 days/week and 100 mcg 3 days/week. I have a feeling that this won't be enough, but I don't want to increase it too quickly. I would much rather deal with the symptoms of being hypo than hyper. The anxiety was almost more than I could deal with.

I've been hyper too during the initial adjustments and it's a scary feeling - I know what you mean! I take .224 mcg of levoxyl/day - just for your reference. I was taking somewhere around .4 of synthroid, but for some reason switching to levoxyl lowered what I needed. The dr. said sometimes that happens.

[kathleena]

Hi Everyone - some interesting conversations here, thought I would jump in with a couple of comments and observations.

First about me: I have Graves Disease, diagnosed in 2004 after 10 years of doctor hopping and complaining that I thought I had a thyroid problem and being told it was perimenopause. FInally went a bit hypo in 2002 and started synthroid. Then seriously hyper in 2004. Treated with anti-thyroid drugs, in remission for 3 years. I also go a bit hypo, so currently taking .5/.75 alternating days. I do use the generic and don't have any issues. Because the antibodies I have are TSI, I do have eye involvement, particularly the left which bulges a little.

So here are some comments on some of these topics. Some opinions/statements vary from people to people, I rarely find a thyroid group where everyone agrees on everything. So I will just say this first - we are all different, managing different bodies. What is good for one, may not be good for another. The important thing is to consider alternatives and recognize facts vs opinions.

- Symptoms lag behind the numbers, sometimes up to 6 weeks. Your body is adjusting all the time to new thyroid hormone levels in your blood. During treatment, my numbers were normal long before my symptoms were gone, especially things like heart palpitations. So don't expect changes in the drugs to work fast like an antibiotic or pain killer.

- If you have eye involvement - it's very important for you to know what type(s) of antibodies you have. TSI is the worst and it can cause major issues with your eyes, especially if you get the RAI. Get yourself to an opthamologist that specializes in Thyroid Opthamology (Thyroid Eye Disease). I have one and he is great. My endo didn't refer me - I was told that they don't refer unless the eye is bulging more than 18(something). So I had my PCP refer me. Having the eye doc was like completing a circle. The endo cares that you thyroid is normalized, the eye doc cares for your eyes and your PCP for your overall health and ongoing blood work.

- Endos don't typically follow with T4 treatment after surgery or RAI. I know this sounds bizarre, but once the thyroid is gone, then some consider their job is done and now it's up to the PCP to normalize the blood levels.

- For the young girl - this is just so unnecessary to put her thru this has your doc ever managed a child without a thyroid? You haven't said you have a pediatrican, if you do not, perhaps that is where you need to go. They have pediatric Endos also. Geez, I'm on .5/.75 and I'm a 55 year old woman with a thyroid. Kids metabolisms are so much faster, you would think they would know to start her off higher than that. Many hugs to you and DD. I'm sure it's very scarey. Things will get better.

- Weight gain is normal with the thyroid treatments, they say that 10-15lbs is attributed to thyroid problems. Going higher than that is generally over-eating/under exercising. My endos NP explained to me that because I had thyroid issues going slightly hyper/hypo for so many years, my body was in an unnatural state for weight. The balance for intake/exercise was way off. So being treated to normalize the thyroid now put me in a more natural state and I needed to find the correct intake/exercise balance again. Makes sense to me. And of course, menopause doesnt help! So I did finally realize that I just can't eat what I used to, and needed to up my exercise. My body is starting to balance, but it has taken a while.

- The significant thyroid measurements are TSH, Free T4 and Free T3 - not Total T4 and T3. I only have TSH drawn now, as I don't need to know the T3 and T4. Before I was diagnosed, TSH was somewhere between 2.5 and 4.0 and Free T4 (when the doc would agreed to get it - grrrrr) was low. If the scale was .8-1.8, then I would be at .8. I feel much better at about 1.1-1.2 and getting higher than that, I start to feel hyper. My endo's NP told me that some people have very small "set points" and mine seems to be just that. So even tho you are in the "normal" range - know your set point. Free T3 is a very expensive test that I think is just not necessary unless the doc suspects you have a T4-T3 conversion issue. So my advice is ask the doc if they think you need the test. Right now, my wonderful PCP is treating me because without the .5/.75, TSH would be well over 3.0 and FT4 would be .8 or lower.

continued in the next post, just in case I run out of space here. :)

[kathleena]

OK, moving on just a couple more comments and then I'm caught up with all the topics here.

- Our need for T4 changes with our health, age and activity. As we age, we need less. Managing a thyroid issue is constant, although many people are normalized at a certain dose for years. Then things change and they have issues and need to be re-normalized. I had surgery at the end of March and went hyper right after due to overmedication. I was housebound for about 6 weeks and took about 200 steps a day around my house. My needs for food and T4 went right in the tank. I was hyper by May 9th. Now that I'm more active and am losing the weight gained while inactive, I'm getting back to my regular dose.

- Armour thyroid is controversial, and like all drugs, is not for everyone. Including T3 with T4 in a normal dose is still considered experimental therapy. My endo will not prescribe Armour, nor will my PCP. You can have T3 added to synthetic T4 with the drug Cytomel if your doc agrees that your FT3 levels warrent it. I would recommend Armour only if you have been following your FT4 and FT3 levels and have evidence that you have a T4/T3 conversion problem. I don't need T3 and would surely feel hyper if I had it in my meds.

[KAMLEM]

- Endos don't typically follow with T4 treatment after surgery or RAI. I know this sounds bizarre, but once the thyroid is gone, then some consider their job is done and now it's up to the PCP to normalize the blood levels.That's definitely not what I have seen from my experience. My endo said that she will be the one to work with me to get my meds straight and monitor me after that. I just met 2 people at work who have had their thyroids removed and they said that their endo is still their primary contact.

[rie'smom]

OK, moving on just a couple more comments and then I'm caught up with all the topics here.

- Our need for T4 changes with our health, age and activity. As we age, we need less. Managing a thyroid issue is constant, although many people are normalized at a certain dose for years. Then things change and they have issues and need to be re-normalized. I had surgery at the end of March and went hyper right after due to overmedication. I was housebound for about 6 weeks and took about 200 steps a day around my house. My needs for food and T4 went right in the tank. I was hyper by May 9th. Now that I'm more active and am losing the weight gained while inactive, I'm getting back to my regular dose.

- Armour thyroid is controversial, and like all drugs, is not for everyone. Including T3 with T4 in a normal dose is still considered experimental therapy. My endo will not prescribe Armour, nor will my PCP. You can have T3 added to synthetic T4 with the drug Cytomel if your doc agrees that your FT3 levels warrent it. I would recommend Armour only if you have been following your FT4 and FT3 levels and have evidence that you have a T4/T3 conversion problem. I don't need T3 and would surely feel hyper if I had it in my meds.

Armour thyroid is controversial because a prescription is about $10. I don't know of 1 single person on Armour, and I've talked to dozens at my doctor's office, that haven't felt 100% better on Armour thyroid meds.

Are there other components of the natural thyroid that also result in a better outcome 6-For those who still respond poorly, what other problems are being missed?

*Mistakenly, doctors are taught that the TSH test does this. Over the last fifteen years, experience has shown that interpretation of this test has resulted in the vast majority of hypothyroid patients being under treated or not treated at all. As an example, the normal range was once again changed last autumn, reflecting that our interpretation of this test had resulted in another 13 million Americans not getting the thyroid treatment they needed. And this is just the ''tip of the iceberg."

The total The total T4 test has been used for many years to help diagnose hyper- and hypothyroidism. The free T4 is a newer test and some feel that it's good as a check but they're not as comfortable with it.

My internist specializes in thyroid issues and an endocrinologist that I saw recommended him. I would NEVER see a PCP physician except for a cold or something relatively minor.

[jennz]

Same here about seeing the endo...we're on our 3rd state since my thyroid's been removed and each time the pcp says nope - you have to go to an endo. Too many variables for the pcps I've had to feel comfortable managing it.

[DisneyMissy318]

Good Morning everyone...

I had an appointment with my PCP this morning (who is also Madi's PCP)... we talked more about DD than me. She is scheduling us an appointment with a pediatric Endocrinologist over at UVA - so a BIG THANK YOU to my DisFriends for that!! She also wrote a standing order for DD's bloodwork to be done at the Treatment Center at the hospital - she ordered - TSH, T3, T4 & T-uptake. By doing the bloodwork at the hospital - also allows us to skip the co-pay for a Dr. visit and only pay for the labwork. AND, Madison had a pretty non-eventful draw there (she's usually hysterical :scared1: - she would get sweats, eyes dialate, scream, etc. etc... it has been absolutely horrible! But the Treatment Center nurses were AWESOME!)

We see her pediatric ENT tomorrow - I'm guessing its a "cut us loose" visit... we are about 12 weeks post surgery. I got a copy of her bloodwork to take with us - I'm going to decline any bloodwork they want to do there (as she just had it done.)

That's where we are now - TSH at 118 - she's been taking the 112mg for 1 week (prior dosage 75mg).

I appreciate all of the information being shared - I actually sound somewhat intelligent when speaking to my Dr. earlier today!

Thanks for all of the answered questions as well! :flower3:

I'll be reading your responses - and will post when we have "new" news!

[rie'smom]

Good Morning everyone...

I had an appointment with my PCP this morning (who is also Madi's PCP)... we talked more about DD than me. She is scheduling us an appointment with a pediatric Endocrinologist over at UVA - so a BIG THANK YOU to my DisFriends for that!! She also wrote a standing order for DD's bloodwork to be done at the Treatment Center at the hospital - she ordered - TSH, T3, T4 & T-uptake. By doing the bloodwork at the hospital - also allows us to skip the co-pay for a Dr. visit and only pay for the labwork. AND, Madison had a pretty non-eventful draw there (she's usually hysterical :scared1: - she would get sweats, eyes dialate, scream, etc. etc... it has been absolutely horrible! But the Treatment Center nurses were AWESOME!)

We see her pediatric ENT tomorrow - I'm guessing its a "cut us loose" visit... we are about 12 weeks post surgery. I got a copy of her bloodwork to take with us - I'm going to decline any bloodwork they want to do there (as she just had it done.)

That's where we are now - TSH at 118 - she's been taking the 112mg for 1 week (prior dosage 75mg).

I appreciate all of the information being shared - I actually sound somewhat intelligent when speaking to my Dr. earlier today!

Thanks for all of the answered questions as well! :flower3:

I'll be reading your responses - and will post when we have "new" news!

Looks like you have everything under control! Isn't that a great feeling? :cheer2:

[kathleena]

That's definitely not what I have seen from my experience. My endo said that she will be the one to work with me to get my meds straight and monitor me after that. I just met 2 people at work who have had their thyroids removed and they said that their endo is still their primary contact.

Yes, that's why I said some endos. My friend had RAI and the endo sent her to her PCP for normalizing the thyroid, and I know of others.

Armour thyroid is controversial because a prescription is about $10. I don't know of 1 single person on Armour, and I've talked to dozens at my doctor's office, that haven't felt 100% better on Armour thyroid meds.

Are there other components of the natural thyroid that also result in a better outcome 6-For those who still respond poorly, what other problems are being missed?

*Mistakenly, doctors are taught that the TSH test does this. Over the last fifteen years, experience has shown that interpretation of this test has resulted in the vast majority of hypothyroid patients being under treated or not treated at all. As an example, the normal range was once again changed last autumn, reflecting that our interpretation of this test had resulted in another 13 million Americans not getting the thyroid treatment they needed. And this is just the ''tip of the iceberg."

The total The total T4 test has been used for many years to help diagnose hyper- and hypothyroidism. The free T4 is a newer test and some feel that it's good as a check but they're not as comfortable with it.

My internist specializes in thyroid issues and an endocrinologist that I saw recommended him. I would NEVER see a PCP physician except for a cold or something relatively minor.

My endo said the most controversy about Armour was because people don't usually need the T3, and I dont know anyone on it either.

He also only tests Free T4, but then just TSH because TSH is the more sensitive test.

And my PCP's office says any TSH over 3.0 should be treated with some T4 and has made the statement to me - the endos want us to keep the TSH below 3.0. Used to be 5.0 a few years ago - back when I was over 4.0 and complaining that I thought I had a thyroid problem! Guess I could have told them!:lmao:

And a PCP just means Primary Care Physician. It could be an Internist or a Family Practice. But I do agree with you 100%, for anything beyond the normal family stuff - once you get into things like thyroid etc - your PCP should be an Internal Medicine doc NOT a Family Practice doc.

She is scheduling us an appointment with a pediatric Endocrinologist over at UVA

That's where we are now - TSH at 118 - she's been taking the 112mg for 1 week (prior dosage 75mg).

Awesome, that is where you belong!

That TSH is really high. I don't know about hypo treatment with T4, but I do know with hyper treatment with anti-thyroid drugs it took a long time for my TSH to adjust up from <.01% to <.02% - about two months and about five months to get to 1.5%.

Hugs to you and to everyone suffering from thyroid instability. I've been both ways and hyper is way more scarey, but both ways really stink.

[angelat]

I was diagnosed in July of this year with Hypothyrodism. Though my TSH wasn’t that high, my Endo put me on levothyroxine because of my symptoms. After reviewing 5 years worth of my blood tests, she noticed that I’ve been up and down for the past 3-4 years and before that I was borderline hypo. I can’t tell you how many doctors I’ve been to. My GP has sent me to a few neurologist over the years because she thought I may have MS (my sister has it). I had major tremor which got worse this year, to the point where I was dropping things and couldn’t hold drinks with one hand. I had major brain fog and I was at the point where I would cry because I would be in the middle of a sentence and forget what I was saying. Finally my periods were all out of whack and I was getting hot flashes and night sweats. I made the appointment with the Endo because I thought I was going through early menopause. I’m only 32, but my mom was finished when she was 36 and my grandmother by 40. so it wasn’t unheard of. The endo ran all of the tests, then took me off BCP and had me retest and sure enough my TSH was a little over 6. I know that doesn’t seem like a lot compared to what I’ve seen others say theirs were, but it obviously was causing a problem for me. 2 weeks after going on the levothyroxine my tremor was completely gone. My nails actually started growing again and I felt better with a little more energy. But then it was all too clear that it wasn’t going to last. While the tremor is still gone, my nails have gone back to the brittle mess they were, my skin peels and cracks and I’m so tired ALL of the time. I’ve also had pain and cramps in my legs, arms and back. I thought that was the medicine, but my Endo says that is the thyroid.

After my blood work a couple of weeks ago, I got a call from the other doctor in her office. This man simply told me my blood work was fine. When I told him what I was experiencing he told me that my TSH wasn’t that high to begin with, he wouldn’t have put me on meds and that it has nothing to do with my thyroid. I have to go back to MY Endo in May from what I understand. If I am feeling worse before then I know I should call her, but I just feel like I’m not sure it will matter. These last tests showed my TSH at 2.901. She had told me my target number was 2 so I guess that is pretty close. A friend of mine says maybe I need T3 in addition, but I guess I’ll have to wait to find out. Whatever the case, I definitely will make sure I’m not seeing the other doctor when I go back in May.

[rylousmom]

Hi,
Just found this thread and hope someone can help. I am having a crummy day and just got a call about my blood work from yesterday. About 3 years ago, I found out I had thyroid cancer while pregnant, they removed my thyroid and but me on medication. For the past two years, I have had whole body scan and uptake procedures and everything was fine. February my TSH level was 0.36 now today they call and my level is 14.40. I am really upset and don't understand how my level went so high. My doctor is really not helpful and basically accused me of not taking my medicine properly. Anyone have any clue how my number got so out of wack. Thanks for any insight.

[rie'smom]

I was diagnosed in July of this year with Hypothyrodism. Though my TSH wasn’t that high, my Endo put me on levothyroxine because of my symptoms. After reviewing 5 years worth of my blood tests, she noticed that I’ve been up and down for the past 3-4 years and before that I was borderline hypo. I can’t tell you how many doctors I’ve been to. My GP has sent me to a few neurologist over the years because she thought I may have MS (my sister has it). I had major tremor which got worse this year, to the point where I was dropping things and couldn’t hold drinks with one hand. I had major brain fog and I was at the point where I would cry because I would be in the middle of a sentence and forget what I was saying. Finally my periods were all out of whack and I was getting hot flashes and night sweats. I made the appointment with the Endo because I thought I was going through early menopause. I’m only 32, but my mom was finished when she was 36 and my grandmother by 40. so it wasn’t unheard of. The endo ran all of the tests, then took me off BCP and had me retest and sure enough my TSH was a little over 6. I know that doesn’t seem like a lot compared to what I’ve seen others say theirs were, but it obviously was causing a problem for me. 2 weeks after going on the levothyroxine my tremor was completely gone. My nails actually started growing again and I felt better with a little more energy. But then it was all too clear that it wasn’t going to last. While the tremor is still gone, my nails have gone back to the brittle mess they were, my skin peels and cracks and I’m so tired ALL of the time. I’ve also had pain and cramps in my legs, arms and back. I thought that was the medicine, but my Endo says that is the thyroid.

After my blood work a couple of weeks ago, I got a call from the other doctor in her office. This man simply told me my blood work was fine. When I told him what I was experiencing he told me that my TSH wasn’t that high to begin with, he wouldn’t have put me on meds and that it has nothing to do with my thyroid. I have to go back to MY Endo in May from what I understand. If I am feeling worse before then I know I should call her, but I just feel like I’m not sure it will matter. These last tests showed my TSH at 2.901. She had told me my target number was 2 so I guess that is pretty close. A friend of mine says maybe I need T3 in addition, but I guess I’ll have to wait to find out. Whatever the case, I definitely will make sure I’m not seeing the other doctor when I go back in May.

:hug: I'm so sorry that you have to go through this. It's hell trying to get your thyroid straight.

I've posted before about Armour thyroid meds which have T3 AND T4. Most doctors won't because they don't believe in it because it's an old medication but I'll tell you what, let THEM go through this hell. It was a miracle for me. Not saying that it would be for you but you never know.

Here's a link to the Armour website where you can find doctors in your area, if you're interested:
http://www.armourthyroid.com/con_phLocator.aspx


Hi,
Just found this thread and hope someone can help. I am having a crummy day and just got a call about my blood work from yesterday. About 3 years ago, I found out I had thyroid cancer while pregnant, they removed my thyroid and but me on medication. For the past two years, I have had whole body scan and uptake procedures and everything was fine. February my TSH level was 0.36 now today they call and my level is 14.40. I am really upset and don't understand how my level went so high. My doctor is really not helpful and basically accused me of not taking my medicine properly. Anyone have any clue how my number got so out of wack. Thanks for any insight.

Sounds like your doctor is out of whack! My sister in law's numbers jumped to 38 when she was taking her meds! :hug:

[pakhowe]

I went for the thyroid uptake count and a thyroid scan yesterday. I have not heard the results yet.

Any results yet?

Five days before the scan, I had to go off the methimazole which the endo gave me for the hyperthyroidism. I didn't think it was helping at all until I went off it because my right eye has been swollen for the last four days. I am glad to start it back up and see if it makes a difference.

Has it made a difference? I am glad you were able to find that things were different when you were off it. Maybe they just need to find the right dose for you to feel 100%.

I got my biopsy results today. I need to have at least 1/2 my thyroid removed. They will determine if it all should come out after they see that 1/2. Anyone want to let me know what to expect?? Will I be in the hospital overnight or come home? How long should I expect to be out of work? If it is cancerous and they remove it all will I have to have any other treatment (cancer treatment, I know I'll be on thyroid meds). I know these are all questions I should have asked the doctor but on the phone at work I didn't really want to get into it. I have an appoint. next week & will ask then but am wondering for now.....

[frdeb1999]

pakhowe..My DH went through this last November. The original surgeon only wanted to remove 1/2 the thyroid....but after lots of research and talking to people on this very thread we decided to push to have the whole thing removed. The original surgeon refused to do that....so we went and got not only a 2nd, but 3rd opinion and they all agreed it was best to remove the whole. He was in the hospital 24 hours. The surgery itself was nearly 4 hours from start to finish. He was sore and groggy for a few days after and then slowly started feeling better. He still is in the process of getting his med levels on track. It's been a process. We can both tell immediately when they are too low and they need to be increased. I can honestly say that he is slowly starting to feel like his old self prior to the on set of problems. And his 1st scan after surgery was all good. He goes for another in December. We'll once again hold our breath til we get the answer. Good luck with your treatment! Keep us posted. :)

[HeyIt'sMe]

I just found this thread which is weird considering my recent dealings with my thyroid.

Some history - In 1988 when I was 21 years old I was diagnosed with hyperparathyroidism and had a parathyroidectomy. The surgeon couldn't locate 2 of the 4 PTH glands so he removed 1/2 my thyroid. I've been on levelthyroxine ever since.

Flashforward to last month - - During my routine physical my internist noticed that my thyroid "felt fuller" and suspected I had a thyroid nodule so he sent me for a thyroid ultrasound. He was right - I did have a nodule (one that was 1.4 cm + three tiny ones). He referred me to an endocrinologist who told me I needed to have a biopsy. I figured that was coming but what threw me was when I was also told she wanted to test me for this rare hereditary cancer (MEN Type 1) because I had early onset of hyperparathyroidism and my mother died of pancreatic cancer. :scared1: She said it was rare and she didn't think that's what I had but waiting for those test results were agony! Luckily, the test was negative.

When I went for my biopsy the cytopathologist that performed the test was able to give me information about 15 minutes after the samples were taken (all 6 of them!). I thought they'd take the samples and then I'd have to wait to hear the results. She took the samples into another room while I waited with an icepack on my neck. She came back after 15 minutes and said her preliminary findings were that they got good samples and they all looked benign - nothing looked like cancer. Her diagnosis was a benign thyroid goiter. She said my endocrinologist would call me in the next week with the final report. Even though the cytopathologist said everything looked fine I still worried until the endocrinologist called. Well, they called and everything WAS benign! Whew. Now I just have to go have another ultrasound in a year and follow-up with the endocrinologist.

[teacups]

I have been on both Synthorid (Levothyroxine too) and Armour.
When things were good either worked the same. But now that things are not so good, neither works well. I am actually taking BOTH together right now.
Have not noticed any changes when the meds were switched. I'd try just about anything at this point. :sad1: I have a doc who is good at trying things as long as it wont hurt me. He knows how bad it is for me.

[rie'smom]

I have been on both Synthorid (Levothyroxine too) and Armour.
When things were good either worked the same. But now that things are not so good, neither works well. I am actually taking BOTH together right now.
Have not noticed any changes when the meds were switched. I'd try just about anything at this point. :sad1: I have a doc who is good at trying things as long as it wont hurt me. He knows how bad it is for me.

How many grains of Armour do you take? I have a call in to my doc about upping my dose. I take 3 grains.

[KAMLEM]

I have been on both Synthorid (Levothyroxine too) and Armour.
When things were good either worked the same. But now that things are not so good, neither works well. I am actually taking BOTH together right now.
Have not noticed any changes when the meds were switched. I'd try just about anything at this point. :sad1: I have a doc who is good at trying things as long as it wont hurt me. He knows how bad it is for me.I can sympathize with you. We have been trying to get my levels straightened out for a while now. My body cannot handle big adjustments, so we have to move slowly and as you know it takes a long time to tell whether the adjusted dosage is right. I'm so sick of feeling miserable. Every bone in my body aches. It's even difficult to dry my hair now because my arms ache so much. We have a trip to WDW booked for April, but if I feel like this I won't be able to do the parks. It gets very discouraging.

[DisneyMissy318]

I thought I would post a little update - DD is 10 - had her thyroid removed in August (it was lingual). Last blood draw was approx. 6 weeks ago and measured 118. She's been on 112mg for 6 weeks.

We have her second blood draw this coming Friday (11/21) - (prayers and pixie dust welcome due to her needle phobia!)

We also have our appointment with the Pediatric Endrocrinologist at UVA on 11/25. (Thanks to my friends here for strongly suggesting this to me!)

Madison was sick week before last - she had a fever for 7 straight days. We went to the Dr. 3 times. I was told that with her thyroid out of whack - that symptoms of other illnesses are magnified and colds and infections hang on longer than they normally would. Not sure if that is scientific - but it seemed to be the case this time - she's never held onto a fever for that long.

As far as her "being" - I *think* she's doing okay. I've noticed some hair loss in the shower. Her hands feel like crocodile skin - so I make sure to lather her up with moisturizer. She doesn't complain of any pains - but would rather just lay in bed reading, watching TV or playing with her DS than just about anything else.

We are leaving in about 2 weeks for Disney - we are renting my Mom a wheelchair because she gets tired easily - I'm thinking that Mom might have to share with Madi.

I'll post another update with the lab results - and what we learn from the endocrinologist.

Have a great day all!

DisneyMissy
Mom2Madi

[jennz]

Poor Madi. :( thanks for the update! Was she a big "lounger" before the thyroidectomy? Every day she should get a little better...the skin and hair should definitely get better!

HeyIt'sMe - great news!:woohoo: I'm sure you had some scary moments for a while there. We might have the same endo - is yours at Riverview?

[teacups]

How many grains of Armour do you take? I have a call in to my doc about upping my dose. I take 3 grains.


I had been on 240 (4 grains) and it just was not helping me. I had started out much lower of course. At one point when I was first upped to 180 I felt GOOD for about 3 weeks. It was fantastic!!!! Then, I crashed. Even all the way up to 4 grains I still flet horrible. BUT my T3 got so high that I couldnt go any higher so I switched back to Syntroid (Levo actually) to see what that was like these days. I had been on it in the past. Now I'm on 200 Levo and 15 Armour. The Armour is so insignificant that it isnt doing a thing. But I understand why my doc wants to proceed with caution. I'd like to get to 200 Synthroid and about 30 Armour and then see what that is like. Honestly there are days when I dont have much hope of ever feeling good
again.

One question: do you all think Syntroid and generic Levothyroxine is similar these days? My doc says it is and not to spend the money on Synthroid. Many years ago it was taboo to take generic. Any opinions?

[frdeb1999]

DisneyMissy....hope everything goes well for your daughter this Friday! :)

[KAMLEM]

One question: do you all think Syntroid and generic Levothyroxine is similar these days? My doc says it is and not to spend the money on Synthroid. Many years ago it was taboo to take generic. Any opinions?My doctor does not recommend the generic. She said that every time you get it, it comes from someplace different and therefore the dosages can differ. She says that she never recommends it.

[DisneyMissy318]

Thanks for the well wishes guys!

If you will allow me to wax poetic for a minute - it makes me so sad that my child, you know - my baby, will have to face the trials and pain that I read about here from you - for the rest of her life. I'm sure at 10 - and the fact that she has had a difficient thyroid since day 1 - she doesn't know what "normal" feels like. She doesn't complain - she does what she can do - and we don't push her. Of course as her Mom, I'm here to support her in anyway I can - to be her advocate at the doctor's visits - to educate myself so I know what questions to ask. Thanks to you here for helping me be the best Mom for Madison that I can be.

Hugs to you all.

DisneyMissy

[teacups]

My doctor does not recommend the generic. She said that every time you get it, it comes from someplace different and therefore the dosages can differ. She says that she never recommends it.

Good to know. I will talk to my pharmacist at next refil and try the real stuff. Woudlnt it be nice it that were the magic I need?? Thanks.

[teacups]

Thanks for the well wishes guys!

If you will allow me to wax poetic for a minute - it makes me so sad that my child, you know - my baby, will have to face the trials and pain that I read about here from you - for the rest of her life. I'm sure at 10 - and the fact that she has had a difficient thyroid since day 1 - she doesn't know what "normal" feels like. She doesn't complain - she does what she can do - and we don't push her. Of course as her Mom, I'm here to support her in anyway I can - to be her advocate at the doctor's visits - to educate myself so I know what questions to ask. Thanks to you here for helping me be the best Mom for Madison that I can be.

Hugs to you all.

DisneyMissy


I was 13 when I was DX'd and had no support from my parents. I went thru Heck. Good for you and your baby that you are standing by her and will help her and just be there in her cheering section! :thumbsup2

[KAMLEM]

Good to know. I will talk to my pharmacist at next refil and try the real stuff. Woudlnt it be nice it that were the magic I need?? Thanks.I hope that this makes a difference for you. I know how badly you want to just feel good again, I feel the same.

[kathleena]

One question: do you all think Syntroid and generic Levothyroxine is similar these days? My doc says it is and not to spend the money on Synthroid. Many years ago it was taboo to take generic. Any opinions?

Well, you could read this recent article about a letter the FDA has sent to the manufacturer that is pretty scathing:

http://www.thyroid-info.com/articles/synthroidproblems.htm

But if you are looking for opinions - Synthroid has manufacturing problems and could vary in dose. That causes issues for some people. This isn't to say that ALL Synthroid doses are wrong, but clearly there is evidence that it is hard to manufacture a stable amount of Synthroid into a pill.

On the other hand Armour comes from different animals and just like humans have different levels of thyroid hormone, so do the animals. The issue with Armour is the same as the issue with Synthroid - you can't always rely on the dose. This is why the use of Armour is so low in the American medical community - they feel the Synthroid is more reliable than the Armour. (MDs as opposed to holistic or naturopaths)

So for me - I would go with the one that feels best to me.

[DisneyMissy318]

Just a quick update. We went Saturday for Madison's blood draw. She had a meltdown (needle-phobia) - the last draw was 7 weeks ago and she did wonderfully - this time she worked herself up into a tizzy... anyway - the nurse was very patient and we finally got the tubes necessary for the tests.

Her TSH was 118 7 weeks ago - and is now 15.7!!!!!! :banana: Even though it's still outside of range - it is so much closer to 2 than 118!!

T3 - 164
T4 - 9.48
T3 Uptake - 28

Overall - not too shabby!!

We meet with the Pediatric Endrocrinologist tomorrow - so I'll be glad to show him these results at our first visit.

I read everything you write - and am much appreciative for this thread and those of you who share so much of yourselves here.

Happy Thanksgiving to you all!

DisneyMissy
Mom2Madi

[jennz]

That's great!!! Is she feeling more energetic? I would guess that she is. I'm so so sorry about the needles, poor girl and poor mom.:hug: I'm glad you had a patient nurse, that helps a lot.

I hope you like your ped endo! Let us know what s/he says...

Happy Thanksgiving to you too.:goodvibes

[pakhowe]

It's been a while since I've posted. I've been reading & keeping up though. I'm glad to have this thread and all the information I've received from it. Thank you all.

I go on Monday for my thyroidectomy. Still don't know if it is cancer or not. Hopefully will know on Monday without having to wait again.

[jennz]

Good luck to you on Monday - is it a complete thryoidectomy you're having?

I'll be thinking about you...:hug:

[frdeb1999]

Good luck Pawhowe:hug:

[frdeb1999]

So sorry....meant pakhowe! My fingers sometimes have minds of their own! :)

[DisneyMissy318]

Good Morning All...

Wanted to post a note saying that I'll be thinking about Pakhowe today. :hug:

Also wanted to update on our appointment with the Ped Endocrinologist on Tuesday. It went well - I was SO glad that I had the blood results from our blood draw to give to them - it enabled them to get an idea of what was going on from the start. I also found out that the ENT who removed Madison's thyroid consulted Dr. Clarke before and during surgery :banana:. I was so happy to hear that! Dr. Clarke knew even more than we did about Madison's condition. He told us that most lingual thyroids do not have to be removed - but Madison also had Hashimoto's which caused a goiter - which was growing in size and had to be removed because it was impedeing her airway. So... that was new information that we didn't know.

She was given the once over by a nurse practictioner - with no personality. It was pretty complete - she felt her b**b buds - looked at her "pubby" - under her arms, etc. etc. Madison was MORTIFIED :scared1: I actually have to close my eyes when I'm helping her with her sports bra in the mornings - so to have this complete stranger - who was very clinical - taking a look was off the chart for her!

Based on her bloodwork - they raised her dosage to 125mcg (up from 112 7 weeks ago). The really good news is that he won't see her again for three months - and he said we don't need to do blood until that visit! :woohoo: Madison was pretty happy - although she realizes we have to do the draw at UVA instead of "my" hospital. When the time gets closer - I'll ask Dr. Clarke to put his order in over here if I think it's going to be an issue.

One thing that I thought was odd was that both the NP and Dr. Clarke said that Madison's weight gain cannot be attributed to the thyroid or the "lack of" and that she needs to lose weight. OK - she gained 20 pounds in the 6 weeks after surgery - she had a thyroid, while it wasn't working well, it was working - then after it was removed - she immediately gained weight. But the comments made were along the lines if you are waiting for the thyroid replacement to aid in losing weight it's not going to happen - she (Madi) just needs to get moving. OK - again - its about all she has been able to do to get to school in the morning and she's compeltely worn out by the time she gets home, it's a little hard to make her run on the treadmill! (Sorry for my little rant.)

I hope everyone had a wonderful Thanksgiving - we are off to Disney in just three short days! (I bet Madi will get some excercise there!)

Happy Holidays All!

DisneyMissy
Mom2Madi

[jennz]

Great news!!:hug: I'm happy for you both.

I had Hashimoto's too, they found it when they took out my thyroid as well.

As far as the weight gain I have to say that's a bunch of crap. :sad2: That's my professional opinion. When I was off my meds (which = no thyroid) I gained weight and hardly ate anything - seriously, I had no appetite. I would have been angry, but it's one of those things that I guess you say "whatever" but know that it's not true. 20 #s in 6 weeks - that's a LOT, especially as a % of her weight and it's got to be due to that.

[rie'smom]

I agree with Jenz. The doc and the NP are full of it if they're saying that the weight gain is not due to thyroid issues.
When my original doc left, the new guy switched me to Synthroid .25. I gained 13# in 1 month!! The new doctor that I found switched me back to Armour and I lost the weight because I was back on the right dosage.

[pakhowe]

Thank you all for your wishes. I am home & only had 1/2 my thyroid removed. The initial biopsy came back benign & we are waiting to hear on the frozen cross section that was sent for further testing. I am sore and tired but doing well. Unfortunately for my DH I can talk just fine, not sore at all to talk. I will go next week for a follow up and find out if I have to take any replacement tyroid meds. Until then I am out of work for a while. I still have a nodule on the left side but it was too small to biopsy & DR says I will have to have ultrasounds to keep an eye on it.

After surgery is coughing up normal? I feel like there is stuff caught in my throat & I keep coughing up stuff. It hurts to cough & I'm wondering if it is normal after anesthesia?

[jennz]

Thanks for letting us know you're doing okay! :grouphug:

I don't remember coughing up afterwards...maybe it is the anethesia.

I'd have to say I'm pretty sure your DH isn't minding you talking, he's just glad you're still there and able to!!:lovestruc

That's the same thing they did with me, took out 1/2 the first time and my biopsy came back benign. It did come back positive for cancer when they sent it out though.

[KAMLEM]

That's the same thing they did with me, took out 1/2 the first time and my biopsy came back benign. It did come back positive for cancer when they sent it out though.That's exactly what happened to me, too. I thought everything was ok until I went for my follow up after the surgery.

I don't remember coughing anything up, either. Maybe you should call your doctor if it continues.

[pakhowe]

That's exactly what happened to me, too. I thought everything was ok until I went for my follow up after the surgery.

I don't remember coughing anything up, either. Maybe you should call your doctor if it continues.

I'm feeling better now. The coughing has stopped. I think I have been trying to do too much too soon. I'm glad the Dr gave me 2 weeks off. So when you got the results back did you have to go back in and have everything removed? The Dr said there is less than a 1% chance of it coming back malignant but I want to know what happens next just to be prepared. How are you both doing now? Has it been a while and are your thyroid levels normal on the replacement meds? Thanks again for all the advice :)

[KAMLEM]

I had to go back in and have the rest of it removed. They did not end up finding anything, but I'm still glad I did it because otherwise it would always be hanging over me. I had that done on 6/18. After that I was scheduled for the radioactive iodine treatment, but when they did the body scan they did not find any traces of thyroid tissue left so they did not have to do the treatment. I was thrilled, but I had done the low iodine diet for nothing!

Since I had to go off the synthroid in preparation for the RAI treatment, it wasn't until mid-August that I got back on it. It is now December and we are still trying to find the right dosage. We discovered that I could not increase my dosage too much at one time or I would get all the symptoms of being hyper and feel awful. I am now up to 137 mcg and I think this will do the trick. At 125 mcg my tsh was 4.9, but I still felt awful. For me, it needs to be between 1 and 2. I have to go back for blood work in about 4 more weeks.

[MrsKreamer]

Hi! I was diagnosed with Hashimoto's Thyroiditis. We finally just got my levels in the normal range(after a year of continually increasing my synthroid). I am still a little lethargic, and my memory is horrible. I am going to a Rheumatologist in 2 weeks. I have been having joint pain and my Endo said Hashimoto's sometimes piggy-backs with other Auto-immune disorders. Luckily I have already tested negative for Lupus.

[jennz]

I'm feeling better now. The coughing has stopped. I think I have been trying to do too much too soon. I'm glad the Dr gave me 2 weeks off. So when you got the results back did you have to go back in and have everything removed? The Dr said there is less than a 1% chance of it coming back malignant but I want to know what happens next just to be prepared. How are you both doing now? Has it been a while and are your thyroid levels normal on the replacement meds? Thanks again for all the advice :)

They called me at home - I think it was the next day - and told me the results came back and they were very sorry but it was malignant and they had me scheduled for surgery the next morning. I knew within the 48 hours. Unfortunately the 2nd surgery did my parathyroids in and I don't have those any more.

I get checked every 6 months for my thyroid levels. I think they probably need to be adjusted since I've been very tired. I've gained weight so that might be why - need more meds b/c there's more of me!;)

[torismom]

Hi, everyone I have a question for the thyroid experts. Due to my inability to lose weight, being tierd , a few other symptons and taking depression/anxiety meds My pysh dr tested my tsh levels and they were 4.36. He said that was high and I need to watch it. That was it. Anyone have advice for me?

Also, my dd will be going to an endo in Jan because all of her levels are her. Her tsh stuck out to me because it was over a 6. All of her numbers were high.She is also an asthmatic and takes a lot of steroids.

I am worried for the both of us. Thanks for any words of wisdom!!

[jennz]

Wow - what are you supposed to do to "watch it?" That's concerning...I have no way of knowing what my levels are! I can guess but that's it. I'm sure you must feel frustrated! Maybe you can ask your dd's endo about it and tell him you'd like to make an appointment to see him...how does that sound? S/he'll probably test other levels as well. Did your dr. run a cbc?

I know your levels can change even over such a minor thing as if your menstrating (sp?), but I'd say you need more input. Heck, I've been on meds for 15 years and I'd need more input!! :)

Good luck!!

[rie'smom]

Hi, everyone I have a question for the thyroid experts. Due to my inability to lose weight, being tierd , a few other symptons and taking depression/anxiety meds My pysh dr tested my tsh levels and they were 4.36. He said that was high and I need to watch it. That was it. Anyone have advice for me?

Also, my dd will be going to an endo in Jan because all of her levels are her. Her tsh stuck out to me because it was over a 6. All of her numbers were high.She is also an asthmatic and takes a lot of steroids.

I am worried for the both of us. Thanks for any words of wisdom!!

[I]American Association of Clinical Endocrinologists that doctors "consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.0.( http://thyroid.about.com/od/gettestedanddiagnosed/a/normaltshlevel.htm)

Many doctors routinely treat patients in the upper 2 range. Honest to God, if I were you, I'd see another doctor. Your thyroid levels are so important not only to your health but to your quality of life. Who wants to just exist? I used to feel that I was just existing until my correct levels with Armour were
found. Your thyroid levels could be contributing to your depression and anxiety. I was on Prozac for 10 years before finding out about my thyroid issues. I've been off since 2000. I'm not saying that this will happen with you ,however, your thyroid can affect this.

I encourage everyone to investigate their thyroid problems. This is one site that I've found to be helpful. There's a link to her website. The thing I like about her is that she is a thyroid patient. She sees this from our perspective.

[CinderelliT]

Does anyone have adrenal gland problems with Hashimoto's?
I haven't taken the time to read the entire thread since I have a wedding to photograph tomorrow (Yay me!) and an 8 page research paper due on Monday (NOT yay me!).
I was diagnosed with Hashimoto's 10 years ago, and I currently take Armour thyroid. Every time I find a dr that I like, they either stop taking insurance, so I can no longer afford them, or they retire. Now I'm stuck with a quack. Anyway, I was originally diagnosed as having Addison's disease as well. I was put on steriods to help my adrenals, and for many years, the combination of steriods and thyroid medicine worked wonders. Then after my DD was born, I got really sick. It turns out that I developed Cushing's syndrome - which is the opposite of Addison's. The endo said that didn't really have a need for the steriods, and that I was not diagnosed correctly. So he weaned my off over the course of several months. I am better overall than I was then, but I am still having problems with my glands, my insulin levels and my blood sugar levels. I think that sometimes I need a small dose of steriods.
Has anyone else experienced anything like this? Right now I am also suffering from weight gain, severe depression, and anxiety. My TSH came back at 2.5, so Dr. didn't change my medication. Any advice and support is much appreciated.
Thanks:goodvibes

[lisah0711]

CinderlliT, I don't have any Hasimoto's advice for you but I would just keep pushing and pushing and questioning things. It took my endocrin doc over 3 years to put me on thyroid -- she just kept "hoping" it would come back to normal function. They aren't the ones who have to live feeling bad all the time and the only person who is going to advocate your cause is you. Unfortunately that is just the way our health care system works.

I do want to say a big, big thank you to the folks who do post on this thread. Thanks to you I got my doc to switch my prescription to Synthroid from the levothyroxine and I feel so much better already. For the two years I have taken thyroid now we have had problems getting the dosage right. I told the doctor that I heard that the generic is a problem because of the fillers and binders interferring with absorption. She said yes that was correct and agreed to let me try the Synthroid. I wanted to ask why she didn't do that from the beginning but she is retiring and I will be going to a new doctor so it is not worth pursuing. Grrrr!

[luvmarypoppins]

Just wanted to know if anyone did the low iodine diet before the radiation treatment. I dont go to the oncologist to next week and I dont know if this will be the treatment but it was mentioned. I looked it up on the internet and it seems basically you can eat nothing? Dairy? etc I am stressing out thinking what I could eat??

[lisah0711]

I don't have any low iodine diet advice for you -- I would like to think that if your diet was going to be really restricted they would have told you before you left the hospital.

I did want to say that I am glad that you are doing better after your surgery -- you're guardian angel was working overtime! No angel emoticon so I will send you some pixiedust: for a speedy recovery.

[teacups]

Hi All- I have no functioning thyroid due to RAI 20 or so years ago (by the way that would be less than my last resort if I could do it over again:headache: ) but I am wondering how my med replacement dose compares to others doses. I asked this once on another thread and got a bunch of "it doesnt matter what my dose is, everyone is differnt so knowing my dose wont help you". Yes. I fully understand that... but I'm terribly curious.
I take Armour Thyroid three 90's a day. So, 270 mg. 60 is a grain so under 5 grains.
That seems like a lot and I still feel so wrong. I'm simply curious.... I'd appreciate anyone on Armour (or even Synthroid. I can calculate the differences) who cares to share. Thanks!

[lisah0711]

Wow! That does seem like a lot! But that may be what it takes for your body to work properly.

I have taken anywhere from 25 mcg to 75 mcg of levothyroxine. I just got my doctor to write the prescription for Synthroid because of concerns about the binders and absorption in the generic. Now I am taking 37.5 mcg of Synthroid every morning.

I had another thyroid ultrasound yesterday to monitor the size of the nodules -- there are three. I've been working on this problem for five years now and getting a little frustrated that it is not consistently better and we still have to tinker with the meds. I start with a new endocrine doctor in March because my old one is retiring. I hope he isn't so conservative in his treatment. My old doctor always hoped my thyroid function would return to normal after a year or two -- hello! Five years now, I think we've waited long enough for that ship to come in . . . . sorry, just venting a little this a.m.

[KAMLEM]

I had my thyroid removed in June and we are still working on the dosage. She needs to increase it slowly because when she tried to do it more quickly I didn't feel well. Right now I am up to 150 mcg. I'm hoping that this does the trick.

As far as the low iodine diet, I did it. It wasn't fun at all. Right before I had the treatment they decided I didn't need it based on the body scan so I did it all for no reason!

[newarknut]

It's been two years since I had my cancerous thyroid removed. I did the radioactive iodine diet and it was alright. I remember eating alot of potatoes, hamburger, unsalted peanuts, and, oh yea, kosher wafers (nasty). I think I was able to use kosher salt for seasoning. Once you have a list of what you can eat, it's not that big of a deal. I did wolf down a big meal when it was all over with, though. The worst part was being a prisoner in my own home for over a week! My wife took good care of me while I was radioactive.

I had my last blood work done this past year using thyrogen shots and I'm all clear (as far as they can tell). Praise God.

If you're going through the process now, trust in the Lord and remember His many promises to love us and to watch over us!

FYI...I take 175mcg/day. I'm about 6'2" 200lbs.

[jennz]

I also have no thryoid and I take levoxy, 244 mcg/day (two of the 112 tabs). For whatever reason I was able to drop from around 350 on synthroid when I switched. My endos have liked to keep my TSH < .1 b/c of the cancer.

[Mimmy Mouse]

I just found this thread and boy am I glad. I am hypo. Let me give you a brief history. Was diagnosed with Hashimoto's thyroiditis when I was in my early 30's. I am now 63. Never had much of a problem all those years until about 4 years ago I started having a problem breathing, climbing steps and my heart was beating fast. My thyroid dr had just changed my meds about 3 weeks before. The doctor sent me for all kinds of tests thinking something was wrong with my heart. About 10 tests and 2 weeks later they found out that I was getting too much thyroid. I was taking .150 7 days a week. So they knocked off 1 day and all symptoms went away. Was fine again until last July when my family doctor noticed my last tsh test was on the low side, .4. So he dropped me from .150 6 days a week to .137 7 days a week. Take meds for 6 weeks then get a blood test. 6 weeks later it was .18. (I felt he was going the wrong way with the meds but I figured he was the dr. not me) So then he dropped me down to .125 7 days a week. 6 wks later blood test was .11. He put me back on .137 to try again. I asked to have all the tests done, not just tsh. I just got bloodwork back last night. Tsh now .04! MY t-4 total was 13.4 high (range 4.5-12.5) My Free T4 index was 4.2 high (range 1.4-3.8). My T3 total was ok 128. my t3 uptake was also ok 31. my t-4 free was ok too 1.6. I don't see the doctor again until next week and they won't tell me anything on the phone. I have no idea what all these numbers mean. Can anyone help? Sorry, guess not such a brief history. Thank you

Bette

[luvmarypoppins]

I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.

I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc.

I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?

Any insight, TIA.

[KAMLEM]

Why do you need to stay overnight for the RAI? I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.

[Christine]

Why do you need to stay overnight for the RAI? I didn't even stay overnight when I had my thyroid removed, I had my surgery at 7:30 a.m. and I was home by noon.


Each individual state has restrictions on whether you can leave the hospital after a high dose RAI treatment or you must stay.

In Virginia, if you have more than 29.9 mci of radiation, you must stay overnight. When your radioactive levels decrease to a certain level, you can leave.

Some states don't have this restriction and they let you leave right after you have a high dose treatment. The problem is that after these treatments, you emit an elevated level of radioactivity that can be harmful to children and pregnant women if they are within 6 feet of you.

[Christine]

I would like to know if anyone did 2 thyrogen shots before the RAI or did you have to not take your synthroid. I am reading conflicting stuff.

I read on the net that one lady said her dr. who was from Sloan Kettering, major cancer center here is only doing the thyrogen stuff now these days etc.

I know the rad. onc. said if I was staying overnight in the hosp. which I chose to do whe was uping my rad dose and giving me the shots, versus the scan.?

Any insight, TIA.


Here is the insight on this.

A few years ago, they did a study with people who scanned and had RAI after being off their meds and they tested against giving them Thyrogen shots and having the RAI. The RAI was less effective for those having Thyrogen shots. Treatment results were better if a person was removed from their Synthroid.

They were trying to get to a point where Thyrogen worked as well as going off your medication. Maybe they have gotten to that point (I haven't kept up with the studies) or maybe they results are close enough that it doesn't matter.

So, this is why you will get conflicting information. Some doctors still don't believe that TREATING they thyroid cancer under the Thyrogen injections is as effective or as good as removing you from your meds and then treating. Other doctors feel comfortable with it.

And certainly, if you have other health risk factors, going very hypothyroid could be detrimental to your health.

[luvmarypoppins]

Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.

[Christine]

Thanks, I am going to ask the rad. onc. about this. But it seems too late at this point? I had the option of staying over night and with a teeny tiny house and 3 ds, they are older, I took dh advice to stay. She said if I didnt I would have to save my lst night clothes for 3 months before getting rid of them and since during my post surgery, I threw up and blew my jugular vein, its better to be there in case some strange or weird thing happens, as will most likely occur with me. They can handle it quickly instead of taking over 30 min. to get back to the hosp. etc.

Yes, it's probably too late. But, if you trust in your doctor and put your faith there, then you have to believe that you are doing the best that you can do for yourself at this time.

When I was first diagnosed in 1995, there were no support groups, no way to get my hands on any research, NOTHING. It all happened so quickly that I wasn't sure I was with the best doctor but when someone tells you that you have cancer, you don't really feel like you have time to shop around like you're buying a car. So I went with who I ended up with. Overall, I did not get optimal treatment initially and I ended up having successive treatments down the road that probably I could have avoided. But, well, what are you going to do, you know?

I agree that being in the hospital isolation is going to be FAR easier on you then staying at home. Depending on the dose they give you, you will not feel that great so it might be better to be alone. Also, you don't have to worry about tainting the silverware, the toilets, the bath, etc. The hospital will have to deal with that.

[luvmarypoppins]

Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on (line for date)
Thyrogen Injection 2 on (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?

This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes.

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc.

I am only staying overnight for the lst day. That is a thurs., coming home on Friday the 13th and then sat. I am suppose to go for a blood test. at the local lab.

I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and hardly the rad. onc. did. at all.

[frdeb1999]

luvmarypoppins....if your not comfortable with any part of your medical team I encourage you to find new ones. We did this with my DH and it was the best thing we ever did. Very hard to do when your in the middle of all this. But you have to deal with them so often and if you don't see eye to eye, or have problems with them it is just going to make things harder. Good luck on all the upcoming things. Wish you nothing but the best.

[Christine]

Oh my head spins. I did read on the internet that some girl posted that her dr. in nebraska came from Sloan Kettering, the major cancer center here and he said the shots are all they do now. I know my rad. onc. has written a chapter in a book about thyroid carcinoma. She seems pretty up on everything and it seems like it is also this university teaching hospitals protocol too as they gave me a pre printed form. That had blanks to fill in , the title was like Prep for RAI 131 etc.

Thyrogen Injection 1 on (line for date)
Thyrogen Injection 2 on (line for date)
and then the scan dates. She said I am not getting scanned since I am coming in?

Yes, I get the same paperwork when I have my scans. Usually you get a shot on Monday, a shot on Tuesday, you take your RAI on Wednesday and then scan on Friday. That's how it works with a scan. Wednesday is usually when your Thyrogen-stimulated TSH peaks so they like to give the RAI at that point. It is still probably pretty high for a few days.

This diet is driving me nuts too. They said the hosp. follows its own guidlines and is so much more strict than the thyca. cookbook stuff. The one thing they are letting us have that is not on the list is unsalted butter? I did ask the dietician if it is o.k. since it has milk and she said yes.

Of course I want to give myself the best chance possible for all of this and now I am having doubt and too many ?? in my head. etc.

The diet is tough and conflicting. I never had any type of butter or margarine. There was a Fleischman's product that was deemed okay, but at that point, I just tried to avoid it. By the time you get to the hospital and eat their food, your RAI will be already at work so at that point, your as safe as your going to be with the diet. The key is to try your best and that's all you can do. Just remember that many years ago (when I was diagnosed), the Low Iodine diet wasn't even done. All they told me AFTER I had my treatment was to avoid fast food and seafood. That was it. Plenty of people did fine back then. Anything you can do with your diet is just helping and making it better.

I honestly dont like the personality of the rad. onc. She is not encouraging or anything at all. I asked my endo. and she said, its just her personality. My endo went over my tumor and biopsy stuff and hardly the rad. onc. did. at all.


You know, there's always one jerk in every medical team. I was lucky that the radiology people with me were FABULOUS, it was just my endo and his nurse that plagued me for years. They were okay for the most part, but at times, they caused me a LOT of anxiety. I stayed with them because of their reputation. If this radiologist is one that your doctor trusts, you may have to overlook the bad bedside manner. So long as your treatment is good, you might just have to tolerate it.

[luvmarypoppins]

Well I was sick all week end throwing up with a virus I caught from ds21. So all week end I had absolutely nothing but gingerale and distilled water ice cubes. I am having dh call the rad. onc. today and see if this is o.k. I think I kept the synthroid down yest, but cant be sure. Never a dull moment. Well at least I didnt do the diet for 2 days, but dont know if this is acceptable or not. gheesh, never a dull moment around here lately.

[frdeb1999]

Hope your feeling better soon luvmarypoppins. We had that here last week and it's miserable.

[Christine]

Well I was sick all week end throwing up with a virus I caught from ds21. So all week end I had absolutely nothing but gingerale and distilled water ice cubes. I am having dh call the rad. onc. today and see if this is o.k. I think I kept the synthroid down yest, but cant be sure. Never a dull moment. Well at least I didnt do the diet for 2 days, but dont know if this is acceptable or not. gheesh, never a dull moment around here lately.


You are good to go. There is nothing in the diet that you *need* for the test. The diet is all about eliminating iodine. I think your virus helped you to do that successfully!!!

[angelat]

I have a question that I thought maybe someone else here might be able to help with. For the past 10 years I've had problems wtih dehydration (dry mouth, eyes, and muscle pain from dehydration) on a day-to-day basis. After I realized that this was an ongoing problem I just upped my water intake. I drink about 40-60 ozs of water at work and then another bottle or two at home at night. I've just learned to live with it all.

However, last Saturday I woke up to my left eye tearing horribly, by the end of the weekend my eye was also swollen and it hurt pretty bad. It felt like the film over my eye was peeling! Monday I went to an eye doctor (not my usual one b/c they don't take my medical insurance, only my vision insurance) they checked my eye and told me that my problem was that my eyes were EXTREMELY dry. He equated it to having chapped hands, only I have chapped eyes. He mentioned that it could be related to my thyroid problem.

Tuesday I called my Endocrinologist to let her know what was going on. I left a message anyway. Today I got a call back and she wants to see me on Monday.

Has anyone else had something like this? If so was it related to your thyroid? Years ago when I first started complaining to my PCP she sent me for bloodwork to check for Sojrens, but that was negative she said. I just want to know what is going on because after 4 days on the drops they gave me my eyes are still not feeling better.

TIA!!

[luvmarypoppins]

Well if you have read some other threads, you will see that I didnt have a virus, I had a bowel obstruction and spent a week in the hosp. after emergency surgery, so the radiation and diet is delayed again.

Just wondering if you did the diet, how did you keep food "moist" without gravy etc. I have a hard enough time swallowing etc. I did put some jelly on some chicken and got it down etc. If anyone has any tips, I would appreciate it.

[Christine]

Well if you have read some other threads, you will see that I didnt have a virus, I had a bowel obstruction and spent a week in the hosp. after emergency surgery, so the radiation and diet is delayed again.

Just wondering if you did the diet, how did you keep food "moist" without gravy etc. I have a hard enough time swallowing etc. I did put some jelly on some chicken and got it down etc. If anyone has any tips, I would appreciate it.

Hmmm...well, I never eat gravy anyway, so I don't know.:lmao: When I had chicken on the diet, I vaguely remember using some recipe on the thyca website that had a balsamic glaze. Can't quite remember though. Here is a glaze/sauce from another low iodine book I have. Says it can be used as a dipping sauce for ribs, chicken wings, or chicken fingers.

2 cloves garlic, minced
1/2 small onion, minced
1 TBSP salt free tomato paste or ketchup
1 TBSP lemon juice
1/2 cup apricot preserves
1/4 cup orange marmalade
1/2 tsp. non-iodized salt
1/2 tsp. dry mustard
1/4 tsp ground ginger
1/4 tsp chili powder
1/4 tsp dried basil
1/4 tsp pepper

Combine all ingredients in a saucepan. Bring to a boil over medium heat. Boil for 30-45 seconds. Stir well to blend.

Sauce can be stored in the refrigerator for about a month. Delicious as a glaze or as a dip.

Here's another:

Pineapple Dipping Sauce

Delicious as a dipping sauce for chicken. Serve extra sauce over rice.

1 Tbsp. cornstarch
3 Tbsp. cold water
2 cups pineapple juice
1 Tbsp rice vinegar or lemon juice
1/3 cup minced red or green pepper
1/8 tsp red pepper flakes
1 cup finely chopped pineapple (fresh or canned)
2 green onions, minced
1 tsp minced fresh ginger

1. Blend cornstarch with cold water in a small bowl until smooth. Combine pineapple juice, vinegar or lemon juice, minced peppers, and red pepper flakes in a saucepan. Bring to a boil.

2. Add cornstarch mixture and whisk over medium heat until thickened and smooth about 2-3 minutes. Remove from heat and cool. Stir in pineapple, green onions and ginger.

Yields about 3 cups. Sauce will keep 4-5 days in refrigerator, in a tightly closed container. You can make half the recipe but it is so good, why bother?

[Bean and 2]

Hi...I've been reading here and thought maybe someone could help me out. This is kind of long so soory about that in advance. Last Sept I had some blood work before surgery and found out my thyroid was off. The Dr has since then been trying to get it right. These have been my blood test results so far.

7/10/08 TSH 10.08
9/18/08 TSH 11.78 Free T4 0.07
12/23/08 TSH 49.990 Free T4 0.85
1/21/09 TSH 17.20 Free T4 1.31
3/04/09 TSH 5.13 Free T4 1.8

My Dr wants to up the synthroid to 175 MCG. My problem is I feel fine and have felt fine. To complicate matters Jan-June of 08 I had chemo for breast cancer. I did fine through all of that sometimes I would feel a little more tired then usual but nothing big. I had surgery in July. I started radiation in Oct and finished that in Dec. Same thing there maybe a little tired but not excessive.

I'm probably not as active as I was before but I'm also 43 and a single parent. I've kept the same work schedule and my kids play indoor soccer and softball. I take them to all games and practices it's not like I've had to drag myself to any of these things. I guess I'm just wondering if I really have a thyroid problem? It's seems as though I do but I keep getting hung on the fact that I feel fine. I have a little more energy lately but I assume thats just getting over the chemo and radiation. I also had a pretty bad infection in Dec and spent 4 days in the hospital so I'm thinking it would take a bit to get over that too.

I guess I just want to know if I should feel bad with the TSH that high? This will be the 4th time the Dr has upped the dosage, should I be feeling different on each dosage? I just really don't want to take medication that I don't have to. Thanks for reading all of this and for any help you may have.

[angelat]

Your TSH levels have been pretty high at times. That's nothing to scoff at. Stay on the meds and just work with the doctor to help get them right. Not having your thyroid functioning properly can cause problems with other organs - including your HEART - even when you may feel fine. It's also harder to heal from things (surgery, wounds, etc) when your thyroid isn't working right.

A big :hug: to you for overcoming breast cancer. Another :hug: one for being a single mom through all of this. Be patient and let your doc do his/her job. I hope things start to get better and that you can get your levels into the normal range soon.

[Christine]

Having a TSH of 5.18 (your best so far) is not terrible. It is technically hypothyroid.

Some people don't feel bad with higher TSH numbers. I am one of those people. I remember after my last treatment (thyroid cancer) where my TSH got really high (130), when I started back on my medicines I gradually felt better and better. At one checkup, I told my doctor "I feel great!!" My TSH was at 8.5. Many people feel horrible at that level.

At any rate, I kept working at my dosage and I finally got to where I need to be (0.3).

I would suggest that you take the next dosage higher and work to get your TSH at around 2.0. That seems to be the "magic number" for optimal body functioning. You may not feel any better at that number than you do at 5.18 but I think it will be better for your body. And since thyroid hormones are not like "medications" per se, it does you no harm to increase the dosage.

[Bean and 2]

Thank you both for taking the time to answer. I started the new dosage this morning. Hopefully this will do it. I have 2 surgeries left for the reconstruction and then I'm done...I hope forever! I was just looking forward to getting a break it's been a really long year.

[Tinker'n'Fun]

Just thought I would hop in and introduce myself. My name is Diane and I have Hashimoto's Thyroiditis Bizarre. My thyroid was removed in 2002 due to a few nodules that came back inconclusive on the biopsy. All was well after the final pathology but they had to remove the whole thing. Struggled afterwards with Vitamin D/K/Potassium. Parathyroids were supposedly ok...

Fast forward to the last year. Levels are freaky. Vitamin D is non-existant, Potassium will not come up, need B12 shots, and TSH is around 8ish and my T4 is actually on the high side. They upped the Synthroid, but I need to get a scan on my parathyroids as the Hashimoto's may have attacked them. NOW I KNOW this is not normal. My doc says I am a test case. They think the Hashimoto's has cause more auto-immune in my system. They have taken my gallbladder and I have "suspicious lesions" on my lungs that they attribute to all this...

So hello, I will backtrack and read about you all. I look forward to posting with you all. Diane.

[Christine]

Hi Diane and welcome!

This all does sound strange. Do they suspect that your parathyroids are not working; hence, the low Vitamin D? Just about everyone is low on Vitamin D, thyroid issues or not, but I'm thinking yours is something else? How are your calcium levels? If they are fine, then I would be perplexed as to why the Vitamin D is low.

I have my entire thyroid removed, plus one parathyroid. My remaining three parathyroids are somewhere in my neck. I always worry about how they will ever find them if something goes wrong.

So your TSH is high but your T4 is high also. Very odd. Do they think that maybe you aren't a converter of T3?

[jennz]

Bean and 2 - right now you don't feel bad, but maybe after you increase your synthroid you'll look back and say "Wow! I feel better now than I did then." Usually the way I feel bad is tired, and when my levels are adjusted I feel like I have a lot of energy - not that I felt "bad" before but instead feel "good" now.

Tinker'n'Fun - I had hashimotos' too, and thyroid cancer. After the final pathology they saw that I had cancer and I had to go back in and have a 2nd surgery and my parathyroids never recovered.

I can definitely tell you if your parathyroids weren't functioning at all you'd know!! :cutie: I take a lot of calcium and a synthetic vitamin d to help w/absorption. I wonder what your calcium levels are if you are super-low on D? Feel free to ask any questions and I'll answer what I can. I don't have potassium problems but they are always checking for it.

The B12 - my dad just had a gasterectomy (sp? stomach removed) and he has to get B12 injections b/c it won't be absorbed anymore. Just throwing that out there...

[Tinker'n'Fun]

Potassium - Low just under the required amount, but see red flagged as low
Vitamin D - very low. Has been for a bit, Dr. ignored.
Calcium - within the normal range, but strangly it is increasing at a steady rate even though I am not taking supplements and or consuming more.
TSH - HIGH
T4 free - HIGH (this should be low with a high TSH, right:confused3)
Iron - with in range
White count - high with markers for allergies high (tested no allergies found)
ANA - rheumo #'s within normal range as per Dr. I haven't got the copy yet so that is yet to be determined.
B12 - within normal to low with shots

I feel like crap. Tired, bones hurt, cold, vision problems, etc. I know the thyroid levels do a whopper to me, but this is more than normal. I also have fibro, IBS, and cervical disc disease. I am a dr's nightmare. My most recent problem is lower left quadrant pain. Thought it was a kidney stone but nothing showed. Nothing showed for diverticulitis either. So they are treating with just pain pills which I hate. I have Donnatal also for my stomach as the pain is causing nausea and I went 4 days without food.

So now I wait. If the #'s come backed skewed at the end of the month I will insist on a sonogram or whatever test they do to see the parathyroid. It's funny though I went 4 years without a blip in my thyroid levels. Well at least I now know why I haven't had the energy to clean the house....

[cinmell]

I have a question that I thought maybe someone else here might be able to help with. For the past 10 years I've had problems wtih dehydration (dry mouth, eyes, and muscle pain from dehydration) on a day-to-day basis. After I realized that this was an ongoing problem I just upped my water intake. I drink about 40-60 ozs of water at work and then another bottle or two at home at night. I've just learned to live with it all.

However, last Saturday I woke up to my left eye tearing horribly, by the end of the weekend my eye was also swollen and it hurt pretty bad. It felt like the film over my eye was peeling! Monday I went to an eye doctor (not my usual one b/c they don't take my medical insurance, only my vision insurance) they checked my eye and told me that my problem was that my eyes were EXTREMELY dry. He equated it to having chapped hands, only I have chapped eyes. He mentioned that it could be related to my thyroid problem.

Tuesday I called my Endocrinologist to let her know what was going on. I left a message anyway. Today I got a call back and she wants to see me on Monday.

Has anyone else had something like this? If so was it related to your thyroid? Years ago when I first started complaining to my PCP she sent me for bloodwork to check for Sojrens, but that was negative she said. I just want to know what is going on because after 4 days on the drops they gave me my eyes are still not feeling better.

TIA!!

Well, I was diagnosed with Graves Disease February 2008. My GYN noticed that my glands felt big at my annual appointment last January and sent me for bloodwork. She called me when she received the results and said she wanted me to go to and Endocrinologist asap b/c my numbers were very high. She was able to get me in the next day, otherwise I would had to have waited a couple of months.

Anyway, my numbers were excessively high according to the Endo, hyperthyriodism. The Endo asked if anyone ever commented on my eyes or told me I have big eyes. He mentioned how graves can affect the eye. After being on the meda for a few months there was no difference in my eyes. I started using eyedrops during the day and and ointment at night to protect the eyes. The doctor said is very important to protect the eyes. He said either use ointment at night or an eye patch to protect the eye from dust getting in them at night when you sleep. I went with the ointment. Graves can affect the muscles behind the eye which causes the eye or eyes to look like they are pushed out almost or the lids don't close all the way b/c it causes inflammation around the eye. My right eye does look bigger and is dry and I can see bits of light when my eye is closed b/c it's not closing all the way.

In September I saw my eye doctor but she referred me to an Ocuplastics Surgeon b/c I guess they specialize in this area. The doctor said I had a mild case and that the eye would go back to normal when my numbers were worked out.

However, I was taken off my thyroid meds 2 weeks ago b/c the numbers finally started to come down in October and have been normal for a bit now but my eye is still big I guess you could say. It gets dry, still tears and if I don't use the ointment before I go to bed I get the blurry feeling in the morning, almost like there is a film over the eye. My eye is itchy and dry so I carry drops with me all the time now. I have a follow up appt. with the Ocuplastics Surgeon in 2 weeks. I'm a little concerned b/c even though the thyroid issue seems be calm now and under control, I don't notice any difference in the eye and I have had several people comment on my eye!

[Christine]

cinmell,

It is my understanding that with Grave's, even if you get the thyroid numbers regulated, you can still have eye problems. As I'm sure you know, Grave's is a specific autoimmune disorder and, while getting the thyroid numbers correct, the Grave's is still there doing its damage.

For instance, I am supposed to be kept hyperthyroid all the time due to thyroid cancer. My doctor told me that I will never have the eye issues because they aren't caused specifically by hyperthyroidism, only by having Grave's. :confused3 I'm not really sure how it works but I swear someone told me this.

I do have terrible dry eyes that started about 6 years ago (my thyroid cancer was 14 years ago). I had all sorts of test for autoimmune but everything was ruled out. I simply have "dry eye" with ocular rosacea. I use Restasis and it has me almost normal. I have a hard time driving without some sort of covering over my eyes if I have the heater or AC on in the car. I just can't do it. But other than that, I'm pretty good. I will have bouts of severe itching or swelling but I can get it under control by upping the Restasis for a few days.

When it first happened to me, though, it was just sooooo bad. My eyes were so bad that my eyelids would sort of droop because they would get stuck and not open fully. Gosh, it was painful.

[Christine]

I feel like crap. Tired, bones hurt, cold, vision problems, etc. I know the thyroid levels do a whopper to me, but this is more than normal. I also have fibro, IBS, and cervical disc disease. I am a dr's nightmare. My most recent problem is lower left quadrant pain. Thought it was a kidney stone but nothing showed. Nothing showed for diverticulitis either. So they are treating with just pain pills which I hate. I have Donnatal also for my stomach as the pain is causing nausea and I went 4 days without food.




I know it's not proven yet but they are finding that chronic low Vitamin D is the cause for chronic pain and even suspect that it might be *the* factor in fibromyalgia in some patients.

Have you seriously looked into getting those levels up?

I also wanted to add, have you visited the Thyroid Issues board on www.healthboards.com? They have some very knowledgeable folks over there who have pretty much seen it all. You might want to go over there and read and post your story/lab values, etc. if you haven't already. I don't hang out there much at all because there are very few thyroid cancer postings, but they definitely have some interesting things going on.

[Tinker'n'Fun]

I know it's not proven yet but they are finding that chronic low Vitamin D is the cause for chronic pain and even suspect that it might be *the* factor in fibromyalgia in some patients.

Have you seriously looked into getting those levels up?

I also wanted to add, have you visited the Thyroid Issues board on www.healthboards.com? They have some very knowledgeable folks over there who have pretty much seen it all. You might want to go over there and read and post your story/lab values, etc. if you haven't already. I don't hang out there much at all because there are very few thyroid cancer postings, but they definitely have some interesting things going on.


Thanks for the site, I will check it out. The Dr' put me on a 4 week high dose Vitamin D. I only take one pill per week. Then at the end of the month they will recheck my levels. I will be put back on the high dose and or a daily dose. IF it does not work, they will start testing, from top to bottom.

[teacups]

Does anyone know if Armour Thyroid is still safe to take considering this swine flu situation? I cant find any info online. Has anyone heard anything about this? Thanks for any information.

[SeansMom]

Does anyone know if Armour Thyroid is still safe to take considering this swine flu situation? I cant find any info online. Has anyone heard anything about this? Thanks for any information.


Yes, it's safe. As is pork and, thank god, bacon.

My question:

My N.D. just moved me from Synthroid to Armour like Westhroid. I'm having a NOT good time with it. I think it made me hyper (fast pulse, breathlessness, and sleep issues) but when I decreased it I feel tired again and other low thyroid symptoms. Anybody else have a hard time adjusting to Armour? And is it really worth it???

[angelat]

So, just an update. I got a second opinion from a reputable ophthalmologist and found out I DON:T have dry eyes. My eyes were simply inflamed. I say simply, but it wasn’t at all simple. Six weeks I went before I could wear my contacts again! This past weekend I had a flare up of swelling again. I was still able to wear my contacts, but above and below my eyes were quite swollen. It looked like I was in a fight. I had a follow up with my Endo on Tuesday. She did the tests for Chvostek's and Trousseau's Signs which were both positive. She feels that I have Calcium deficiency as well as Vitamin D deficiency. She is assuming that the eye problem is simply a result of my thyroid. My TSH crept back up to 3.93 so she upped my dosage. It’s not “high” but I feel like crap. I’ve been taking 50,000 IUs of Vitamin D every two weeks for 6 weeks now. She asked me to start Calcium in addition to my multivitamin and I’ll have blood work to check everything in July.
I spoke with my pharmacist and she said that Vitamin D deficiency isn’t something they see/hear much of when dispensing medications. Usually Vitamin D is prescribed when bone loss is found in post-menopausal women. So, I wonder what the instance of Vit D deficiency is in younger women??? I just want to know why I’m having all of these issues. I know it comes with getting older, but I’m only 33. Is this really normal???

[jennz]

angelat - omg about your eyes! I am having the same problem...it's horrible! I'm working right now but had to post quickly, I'm going to go back and read your posts and answer later today...

[jennz]

She did the tests for Chvostek's and Trousseau's Signs which were both positive. She feels that I have Calcium deficiency as well as Vitamin D deficiency.

I am also hypocalcemic, due to my parathyroids being damaged and not recovering during my thyroid surgeries. My body doesn't make calcium any more so I have to take a lot of supplements. I also have to take a prescription of a synthetic vitamin D to absorb the calcium. If you do have a D deficiency maybe you're not absorbing the calcium you need...just a thought...

[jennz]

update: my levels came back today and my vitamin D is very low...they called in a prescription, the 1 pill/week for 8 weeks. Also my "sed" levels are high...off to google that one!

[frdeb1999]

My DH had his thyroid removed 18 months ago. He started having jaw tremor problems shortly after....and they are slowly happening more. It does'nt hurt him...just embarassing for him as he never knows when it will happen. Had a MRI and it showed absolutely nothing. His surgeon said he has never had any nerve issue's like this in patients....although I don't know if I believe this. He is doing very well otherwise. Just wondering if anyone else has had issue's like this?

[lizbaby007]

My story-

For years after a severe upper respriratory infection when I was 23 (that nearly killed me!) I suffered from an increased pulse rate - 130 at rest - heart palpitations and shortness of breath. Of course the first thing checked was my thyroid. Blood work came back borderline hypo to normal. Upscan was normal. Was told I needed to work out....m'kay.

4 years later, still suffering the palpitations (although heart rate now only 112 at rest, yeah!) I developed a new symptom. A huge goiter. I didnt have insurance at first but after a couple of months with the thing getting larger and larger I went to the local charity(?) hospital. $2500 later and 18hrs of sitting in a hard plastic chair. I was told my bloodwork showed I was borderline hypo (duh I told you that dr, remember?) and that I just had a severe case of tonsilitis. Given antibiotics and told to come back in a week if it didn't clear up. Well it didn't and I went back and was told it was now a muscle tear. Ummmm, okay. Strange that my neck muscles would spontaneously tear but whatever your the doc. :confused3

6months later I had learnt to deal with this new symptom and had just gone on with life. I then got insurance and decided to see a new Dr. He immediately told me that it was my Thyroid. That I was most certainly HYPER-thyroid and that they would kill it with radiation and the likes and I would be good as new and feeling better than ever. He started me on a low dose of levothyroxine to alleviate the goiter. 1 week later I got a call from his office saying I WAS NOT hyper but hypo...I must have flip flopped. I told them that I had always been borderline hypo (since the very beginning) and doubted I was ever hyper. In any case my thyroid pill was upped and I was told in 6months to a year I would be good as new.

It has been a year and a half and I feel worse now then I ever did. About a month and a half ago my endo upped me to 88mcg as he was concerned that my goiter was coming back even though my thyroid levels tested normal. I told him that every time he upped it, I felt like I was comatose. He told me to take the pill at night instead of morning. Since that time I have slept 10-12 hrs a night and apon waking find myself falling asleep throughout the day. I have no energy. I get numbness and tingling feeling in my arms and legs. I have a throbbing pain in my neck where my thyroid is located. The worst part is over the past year, I have developed a sever abdominal pain. It starts about 2hrs after taking my medicine and gets worse throughout the day to the point I have diffuculty breathing. And forget eating. How can you with a brick like feeling just under your ribs with stabbing pain?? Prilosec and then aciphex use to work for the pain, but no longer. This last time it was so intense I honestly thought I was going to die.

So I went to a new Dr who ran a host of tests...all normal. Says thyroid is normal. I explained it always has showed normal. Even before starting medicine. In any case, I stopped taking my Thyroid pill altogether. Yes thats right I went from 88mcg to nothing. On the second day it was like an awakening. I felt better than I felt in 6 years!! I was mentally alert, went to bed normally and awoke refreshed 7hrs later. Worked in the yard, ate normally with no stomach pain. By the third day though, I was having heart palpitations and swelling in my neck again. So I took a 1/2 of my 88mcg pill. Stomach started hurting a little but nowhere near the pain it has been. I called the Dr and told him and he said for now he would like me to take a 25mcg dosage. See how the stomach pain goes and see if my thyroid levels stay normal (although I am really not trusting that at all!)

So I am on another 3month wait/journey to see if this will finally be the answer for me. At times I have wondered if it was ever really my thyroid and not something else that was causing the fast heartrate and shortness of breath (since that was signs of hyper not hypo like I always tested for). In any case I certainly feel everyones pain and can only hope that answers come to us all :)

[Eeyores Butterfly]

Hi! I've not posted here before, but I was hoping you all could answer some questions for me:

My mom has had thyroid issues for a very long time. She had surgery to remove a goiter in 1986. Since then she has been on thyroid meds, but if it's enough of a dose to stop it from growing she is absolutely miserable. If they put it where she feels better, it doesn't stop it from growing. Her doc has discovered more goiters and tests for atypical cells are inconclusive so she has to have it removed on July 8.

Has anybody ever had a test come up inconclusive? What was the result?

The other question I have is about family risk? It seems like every time I sneeze I get tested for thyroid function "because of family history". So far they have always been normal. Does anybody know what the risk is if you have an immediate family member with thyroid problems?

[KAMLEM]

I had a nodule on my thryroid so they did 2 needle biopsies that were both inconclusive. I had surgery to remove the nodule, so at that point they took out half of my thyroid and while I was under anesthesia they had it tested and it came out benign. A week later they told me that after doing some further tests it was cancerous so I had to go back in to have the other half taken out.

My great grandmother and my mother both had thyroid disease so it definitely runs in my family. My endocrinologist said it's very hereditary, especially with women, so you should stay on top it it if you believe you may have any issues.

Good luck with your Mom. My surgeries were both very easy. The surgery was at 7:30 a.m. and I was back home by noon both times. I had almost no pain at all.

[DisMomme]

Hi All,
back in December I had 1/2 my thyroid removed due to a benign nodule (the fine needle biopsy had come back inconclusive). I had blood work done 6 weeks later and it came back normal. Last month I went in to the ENT for a follow-up. Everything looked good. Come back in 1 year for another ultrasound. (I have another nodule on the left side - too small to biopsy)

I happened to mention how tired I have been lately and that I have gained 10 pounds in about a month. He ordered another blood lab. I called the office back Friday and they had called in a prescription for a small amount of synthriod (.5 mcg). The nurse said the doctor wanted me to start taking it before the weekend and I will go for another lab in 6 more weeks.

She said my TSH levels were low but that everything else looked fine. I have no idea what that means. I have requested lab results to be sent to me as well as the Dr but never got them. I don't know what the levels are so I cannot even google it to see what is protocol.

[Christine]

Hi All,
back in December I had 1/2 my thyroid removed due to a benign nodule (the fine needle biopsy had come back inconclusive). I had blood work done 6 weeks later and it came back normal. Last month I went in to the ENT for a follow-up. Everything looked good. Come back in 1 year for another ultrasound. (I have another nodule on the left side - too small to biopsy)

I happened to mention how tired I have been lately and that I have gained 10 pounds in about a month. He ordered another blood lab. I called the office back Friday and they had called in a prescription for a small amount of synthriod (.5 mcg). The nurse said the doctor wanted me to start taking it before the weekend and I will go for another lab in 6 more weeks.

She said my TSH levels were low but that everything else looked fine. I have no idea what that means. I have requested lab results to be sent to me as well as the Dr but never got them. I don't know what the levels are so I cannot even google it to see what is protocol.

When TSH levels are "low" it actually means that you are taking too much thyroid hormone (I know that sounds backwards). TSH is not a thyroid hormone itself--it is Thyroid Stimulating Hormone. If you don't have enough thyroid hormone in your body, your TSH will rise (go higher) in an attempt to drive your thyroid gland to produce more. If you take thyroid hormone, the TSH (which comes from the pituitary gland) relaxes and it drops down and goes "low." So, low TSH equals that you have more than enough thyroid hormone.

[luckymom4]

I'm hypo. Had a growth last lear which turned out to me liquid, not fibroid. I had it aspirated last June 9th. Now I have another one in almost the same spot. These things have grown really fast, from nothing there at all to very large growths within a few weeks. The last one was so big I didn't even have that "hollow" spot at the bottom of my neck. When I get these I find that I get tired even more easily than usual. I have to clear my throat a lot and if I talk for more than a few minutes at a time I get a sore throat. The good thing is that after the last one was aspirated my hypo is pretty easy to control with just healthy lifestyle changes. So I'm hoping this one goes as well. The only bad thing is I have no health insurance, but luckily it's not too expensive.:thumbsup2

[DisMomme]

When TSH levels are "low" it actually means that you are taking too much thyroid hormone (I know that sounds backwards). TSH is not a thyroid hormone itself--it is Thyroid Stimulating Hormone. If you don't have enough thyroid hormone in your body, your TSH will rise (go higher) in an attempt to drive your thyroid gland to produce more. If you take thyroid hormone, the TSH (which comes from the pituitary gland) relaxes and it drops down and goes "low." So, low TSH equals that you have more than enough thyroid hormone.

Thank you for the clarification. I actually went to my GP for an checkup and mentioned this to her as well. She was able to look up the lab results. My TSH was high, although only slightly. I think she said it was in the 6s?

I mentioned to her about the weight gain and tiredness. She doesn't think it is thyroid related. Any insight on that would be helpful. Thanks.

[Christine]

Thank you for the clarification. I actually went to my GP for an checkup and mentioned this to her as well. She was able to look up the lab results. My TSH was high, although only slightly. I think she said it was in the 6s?

I mentioned to her about the weight gain and tiredness. She doesn't think it is thyroid related. Any insight on that would be helpful. Thanks.

Okay, so if your TSH is in the "6" range, you are officially hypo. Generally, anything over a 3.4 is now considered hypo (used to be around 5.0).

As to whether it is causing your symptoms--probably. It is truly a Your Mileage May Vary situation. I, personally, don't feel bad at all when my TSH is around 6 nor do I gain weight. I generally have to get to the teens before I start to feel "off". But many other people will feel differently.

For instance, because of my past history of thyroid cancer, my doctors would like me to be hyperthyroid. But I don't tolerate it well. I really can't get my TSH below 0.9 or I start to feel bad. But other people can get closer to 0 and feel perfectly fine. I do better at a higher TSH.

[KAMLEM]

Thank you for the clarification. I actually went to my GP for an checkup and mentioned this to her as well. She was able to look up the lab results. My TSH was high, although only slightly. I think she said it was in the 6s?

I mentioned to her about the weight gain and tiredness. She doesn't think it is thyroid related. Any insight on that would be helpful. Thanks.I'm not a doctor, but I would disagree with this based on my personal experience. When my TSH is at 6 I feel miserable. Mine needs to be close to 1 to feel good, but like Christine I cannot tolerate being hyper. It's such a fine balance.

[DisMomme]

It is a fine balance. I have a feeling that my ENT and GP are going by the 5.0 is normal when 3.4 is now the accepted norm. I will have my next round of blood tests done but then I will ask to see an Endo if my levels aren't lower. Thanks for the info! :)

[rainydayplay]

Hi! I just found this board and thought I'd introduce myself.

I was diagnosed with mitral valve prolapse (trust me..it's relevant!) in Feb of 2002. I've been on meds ever since for that to control heart palpitations.

In August of 2003, my father RAI treatment for his Graves Disease. He had gotten to the point that he constantly had the shakes. They were starting to think he had Parkinson's or something like that -- they didn't suspect the thyroid because he didn't have any change in weight.

So, I started doing some internet research about Graves Disease, and I saw that Graves can cause Mitral Valve Prolapse. I made an appointment with my GP, who said that it doesn't work backwards, but, if I had family members who had thyroid problems, I needed to be tested too.

The results? She said my TSH was low but still normal..and she was concerned about the presence of Lupus antibodies. A month later, I was officially hypothyroid, with a 7 pound unexplained weight gain to boot.

Unfortunately, immediately afterwards, I quit my job (bye-bye insurance!) then found out I was pregnant. The nurses I saw while I was pregnant were not concerned at all with my hypothyroidism, so I went pretty much my entire pregnancy without medication.

When I finally had insurance again in late 2006, I found a new GP and got back on medication. When it was finally worked out, I was on 75mcg.

That October, I had gotten myself into an exercise routine. I was feeling a lot better -- more energetic, happier, etc. January 2007, though...I felt like I'd shut down. I couldn't drag myself out of bed early enough to exercise (I did manage to get to work, though) I had 0 energy -- even taking every available opportunity to sit at work (I'm a teacher, and sitting is generally a no-no when there are students in the room).

Of course, my GP was not concerned. He actually seemed to act as though I was a woman and was just complaining because that's what women do.

In March 2007, I thought I felt something in my throat, as though my thyroid were growing. I didn't ask about it until April, and my GP sent me for an ultrasound. It took 2 weeks to get results..then all I got was "The ultrasound shows several nodes of different sizes. We're sending you to an endocrinologist to make sure it isn't cancer or anything." And, of course, it took a month to get in to see the endo.

When I described everything to the endo, he said, "Well, that sounds like classic Hashimoto's Thyroiditis." Even when I told him about the tiredness, he asked, "Did it feel like you were just coming off the flu?" And that was the best way to describe it -- since I wasn't "sick", I didn't think about making that connection for how I felt.

A year later, my endo got an ultrasound machine and said he'd use me to do his training. He'd never gotten the results from the previous ultrasound (even though he called and faxed requests for it). I got to see as he examined, and he described what it would look like if one were "hot" (potentially cancerous). There were definitely a lot of nodules, but none were hot. He said, "This is exactly what a textbook Hashimoto's thyroid looks like. Why didn't anyone just tell you that's what you had? Or why didn't they just say from the first ultrasound that it was an obvious case of Hashimoto's?"

My level today is a little over 2 (I think the last one said 2.34), and I guess that seems to be normal, even though I still feel tired most of the time and have periods of weight gain where I don't change anything about eating or exercise habits but I just gain weight...then it seems like I can't do anything for it to go away. :confused3

Oh, and if you're wondering, yes I did quit going to that GP.

[SeansMom]

Hi! I just found this board and thought I'd introduce myself.

I was diagnosed with mitral valve prolapse (trust me..it's relevant!) in Feb of 2002. I've been on meds ever since for that to control heart palpitations.

In August of 2003, my father RAI treatment for his Graves Disease. He had gotten to the point that he constantly had the shakes. They were starting to think he had Parkinson's or something like that -- they didn't suspect the thyroid because he didn't have any change in weight.

So, I started doing some internet research about Graves Disease, and I saw that Graves can cause Mitral Valve Prolapse. I made an appointment with my GP, who said that it doesn't work backwards, but, if I had family members who had thyroid problems, I needed to be tested too.

The results? She said my TSH was low but still normal..and she was concerned about the presence of Lupus antibodies. A month later, I was officially hypothyroid, with a 7 pound unexplained weight gain to boot.

Unfortunately, immediately afterwards, I quit my job (bye-bye insurance!) then found out I was pregnant. The nurses I saw while I was pregnant were not concerned at all with my hypothyroidism, so I went pretty much my entire pregnancy without medication.

When I finally had insurance again in late 2006, I found a new GP and got back on medication. When it was finally worked out, I was on 75mcg.

That October, I had gotten myself into an exercise routine. I was feeling a lot better -- more energetic, happier, etc. January 2007, though...I felt like I'd shut down. I couldn't drag myself out of bed early enough to exercise (I did manage to get to work, though) I had 0 energy -- even taking every available opportunity to sit at work (I'm a teacher, and sitting is generally a no-no when there are students in the room).

Of course, my GP was not concerned. He actually seemed to act as though I was a woman and was just complaining because that's what women do.

In March 2007, I thought I felt something in my throat, as though my thyroid were growing. I didn't ask about it until April, and my GP sent me for an ultrasound. It took 2 weeks to get results..then all I got was "The ultrasound shows several nodes of different sizes. We're sending you to an endocrinologist to make sure it isn't cancer or anything." And, of course, it took a month to get in to see the endo.

When I described everything to the endo, he said, "Well, that sounds like classic Hashimoto's Thyroiditis." Even when I told him about the tiredness, he asked, "Did it feel like you were just coming off the flu?" And that was the best way to describe it -- since I wasn't "sick", I didn't think about making that connection for how I felt.

A year later, my endo got an ultrasound machine and said he'd use me to do his training. He'd never gotten the results from the previous ultrasound (even though he called and faxed requests for it). I got to see as he examined, and he described what it would look like if one were "hot" (potentially cancerous). There were definitely a lot of nodules, but none were hot. He said, "This is exactly what a textbook Hashimoto's thyroid looks like. Why didn't anyone just tell you that's what you had? Or why didn't they just say from the first ultrasound that it was an obvious case of Hashimoto's?"

My level today is a little over 2 (I think the last one said 2.34), and I guess that seems to be normal, even though I still feel tired most of the time and have periods of weight gain where I don't change anything about eating or exercise habits but I just gain weight...then it seems like I can't do anything for it to go away. :confused3

Oh, and if you're wondering, yes I did quit going to that GP.

Thanksk for sharing. In that "misery loves company" way it's great to know other's have issues with their Hashimoto's. Sometimes I feel pretty alone with it. I just switched meds, which ended up being a bad thing for me: My TSH was .96 in April, and by mid-June it was 17.9. Yep. No wonder I was crashing by 3:00 pm, losing hair by the fistfuls, sore & achy joints, and gaining weight with no dietary changes. I was also emotional for no reason at all. Yuck! I just had my TSH drawn again yesterday after returning to my previous drug and dosage. It just makes me frustrated that I have times that are just wasted...it just drifts by me when I feel so badly. Kind of like wading through mud every day just to do the things that have to be done.

[ElizK]

just found this thread after creating a thread with my question, but I'd like to post it here anyway:

Ever had an allergic reaction to Levothyroxine? I've been having rash/hives randomly show up, mostly on my arms. This has been going on for MONTHS, maybe as long as a year. I usually slather some Benadryl gel on the offending area and go along with my life. It was really bothering me today, so I started checking around and discovered it could well be my thyroid medication! It could just be stress, too, but how do I figure out which one???

I'll call my doctor tomorrow, but I'm just wondering if anyone else has had this problem, and what medication you were switched to, and what the cost difference was. I just had a 3 month supply filled at the pharmacy! Oh, well. I'm ready for this to STOP!!!

For a little background, I was diagnosed a little under 2 years ago as "sub-clinical hypothyroid", with a TSH of 3.6, a year later it was 3.4, 6 weeks after that it was 4.6 after my medication was adjusted. At last check it was 3.3. I'd like to get it lower (because of all the wretched symptoms, namely always being cold and the weight gain:headache:). I am taking levothyroxine 25mcg.

[DisMomme]

I don't think I'm going to like this journey of getting the right dosage of synthroid. I am on 50mcg of Levothyroxine. This was the first dose prescribed. The ENT told me to wait 6 weeks and have my blood tested again. Do I have to wait 6 weeks for it to metabolize in my system? I had a blood draw after my surgery at exactly 6 weeks and all was normal, 3 months later my TSH was 6.4 and I was basically useless. The last week of school we had field trips planned all week and I was exhausted trying to keep up.

I know that the 50 mcg is not working because I don't really feel any different (been on it for a little over 4 weeks). My memory is mush and I'm gaining weight while keeping a food diary and trying to lose. My muscles ache, the only upside to that is I see a chiropractor every other week and get a massage and adjustment which helps.

I'm also worried about the left remaining side of my thyroid. Last Dec. when I had the surgery the nodule on the left side was too small to even biopsy. A couple weeks ago when I visited my PCP, she said she could now feel the nodule. Will this mean more surgery? I am scheduled for a follow-up ultrasound in Nov. Should I call to move it up?

Any help or insight about this roller-coaster ride would be appreciated. :)

[KAMLEM]

I just went for my one year follow-up after having my thyroid completely removed. Dr. said that there is some thyroid tissue that's showing up on the ultrasound so she wants to keep an eye on it. Has anyone had this happen? I'm not sure if it's something that they missed the first time or if it actually grew back (if that's even possible). I have to go back for a repeat ultrasound in 4 months. I can't stand the fact that I'm going to have this hanging over me for that long.

[Christine]

I just went for my one year follow-up after having my thyroid completely removed. Dr. said that there is some thyroid tissue that's showing up on the ultrasound so she wants to keep an eye on it. Has anyone had this happen? I'm not sure if it's something that they missed the first time or if it actually grew back (if that's even possible). I have to go back for a repeat ultrasound in 4 months. I can't stand the fact that I'm going to have this hanging over me for that long.

Did you have thyroid cancer?

The thyroid does not grow back. The only thing that can grow back is a cancer, unfortunately, so if there has been regrowth, it would not be normal thyroid tissue.

Having said that bit of cheery news, when a thyroidectomy is done a surgeon cannot possibly get every bit of thyroid tissue. They actually leave a tiny bit behind to make follow up RAI treatment more effective.

Again, I don't know if you had/have thyroid cancer but it would not be normal to "watch" this tissue via using only ultrasound. If your gland was non-cancerous then this may be standard procedure.

[KAMLEM]

I did have cancer. I didn't have the RAI treatment because when they did the body scan they said there was no tissue left to treat. I thought this was all done and over with, I should have known it wouldn't be so easy.

[Christine]

I did have cancer. I didn't have the RAI treatment because when they did the body scan they said there was no tissue left to treat. I thought this was all done and over with, I should have known it wouldn't be so easy.

Hmmmm....that's VERY interesting. I really do not like to criticize the medical care others receive but, having been a part of the thyca support list for 10 years I have *never* heard of any patient being told there was no thyroid tissue left to treat. Personally, I was told that a surgeon can NEVER get all the thyroid tissue out, hence the need for RAI treatment after surgery unless the cancer is in the millimeter size.

If you don't have follow up RAI you cannot be successfully followed up with thyroglobulin tests or anything. The ultrasound isn't really able to tell what is in your neck.

I will be blunt with you--I think you should seek a second opinion. You are a thyroid cancer patient. You had known thyroid cancer in your neck. ANY kind of growth at this point should never be watched and I also believe you should have RAI treatment.

Have you participated in the thyca group online? It wasn't until I started going to support groups that I realized that my initial treatment was not optimal which caused me problems a few years after surgery.

[luvmarypoppins]

So christine are you there (sorry about your crummy week end, hope today was better), anyone else too that has thyroid cancer, did you have any problems post surgery with controlling your body temperature? My synthroid is 200 and I am either sweating hot or freezing cold. Mostly I wake up hot, not a night sweat like menopause, just hot, and then it alternates. just had more blood tests and am going to the endo for a check up on thurs.


Christine, just wondering about your other comment, how the ultrasound cannot see what is in your neck. I am suppose to have one in the fall. The endo says its routine procedure after the ca surgery etc. So if its not such a definitive test, then why are they doing it etc? They even told me the blood tests with a higher raised level would be a better indicator before the lymph nodes started popping out on my neck again etc.

[Christine]

So christine are you there (sorry about your crummy week end, hope today was better), anyone else too that has thyroid cancer, did you have any problems post surgery with controlling your body temperature? My synthroid is 200 and I am either sweating hot or freezing cold. Mostly I wake up hot, not a night sweat like menopause, just hot, and then it alternates. just had more blood tests and am going to the endo for a check up on thurs.


Christine, just wondering about your other comment, how the ultrasound cannot see what is in your neck. I am suppose to have one in the fall. The endo says its routine procedure after the ca surgery etc. So if its not such a definitive test, then why are they doing it etc? They even told me the blood tests with a higher raised level would be a better indicator before the lymph nodes started popping out on my neck again etc.


I had a lot of issues with regulation following my surgery and starting Synthroid. When you have your thyroid gland unceremoniously ripped out of your neck ;) you tend to get on a hormonal roller coaster. It has been 14 years for me (August 1st was my *anniversary*) so it is hard to remember. I just remember feeling really odd for about 6 months. Sometimes I felt like I was buzzing or jittery or jerky, other times very cold. I remember feeling hot a lot after RAI (for weeks/months). The very first time my Synthroid dose was too high I would get terrible face/ear flushing episodses at work.

For the most part that has evened out, although, now I am entering perimenopause and I get a lot of weird stuff going on.

I also don't mean to confuse anyone about the ultrasounds. It is a very useful tool in following up for thyroid cancer. They weren't even doing them as follow up when I was first diagnosed and I only just had my first one 6 months ago!!! You must remember that not ONE test for thyroid cancer is perfect. The thyroglobulin blood test (tumor marker) can give false negatives in some people, the RAI diagnostic scan and give false "clean" scans in some people, and certainly an ultrasound can "see" everything in your neck but it cannot tell if what it sees is cancer or something normal the surgeon left behind. Having *all* the tests together gives a patient the best diagnostic procedure.

My concern with Kamlem's situation is that she did not have "clean up" RAI after surgery and from her information in her post it sounded like the doctor might only be following her with ultrasound. In my VERY non-medical opinion (and I want to be clear about that), it isn't the norm for what I hear of most thyroid cancer patients. I've always been told that if you do not have RAI following surgery, it is very hard to follow up with scans, bloodwork, and other diagnostic tests because you never get a totally cleared out neck. The ultrasound of course is valuable as you continue to compare the different ones with the baseline done right after surgery. I sure hope I didn't scare her off!! I hate being negative about this stuff sometimes but I really feel, at least when it comes to thyroid cancer, that it is important to give out my honest thoughts on what people are going through. This is one situation where too much of trying to be polite might not help someone to ask their doctor questions.

[IMALOVNDISNEY]

I have been lurking on this thread for a very long time. Think I have even posted a couple of times. But, now I need some in put from all your experiences.
My history. I was dx'd at the age of 21 with hypo thyroid (25 yrs. ago). Was placed on Synthoid and just moved forward. Well I have to be honest, I wasn't very good with taking my meds nor with my blood work. Never though it was all that important. No one ever explained just how important my thyroid was. I know now that my thyroid was the reason that I had 4 failed pregnancies. Several years ago I was told that my THS levels were way to high and was given the radio active pill to slow it down. (don't remember the levels) Things seem to go well for awhile. Almost 5 years ago my THS levels were to high again. How it was explained to me was my thyroid should have been pumping out hormone a rate of 30-35 and mine was pumping at almost 80. This was causing my entire body and brain to misfire. I couldn't remember how to get home. I couldn't carry on a normal conversation. I would forget the simplest things like how to pick up the phone when it rang. Or how to tie my shoes. I even got lost once on my way home from work. Again, I was given the radi pill and told this with synthroid all would be good.
Oh and at the same time I was told I had early stages of MS.

Well fast forward to the last few months. I have been feeling sluggish, always tired. I'm always in a fog and can sleep at the drop of a hat. And my migraines were getting worse and sticking around almost 24/7. I have had migraines since I was 4, but, these were different. It felt like my brain was pushing on my scull and was going to push out my ears. ( this is exactly how I explained it to my PCP). The pressure in my head is intense. Went to my PCP last Wednesday was given RX for prednisone 40mgs 1x day for 5 days. Ordered an MRI of the brain to see if there were any changes in my lessions. And ordered fasting blood work for today. The prednisone seemed to diminish the migraines but didn't take them away.
Well I just got off the phone with my PCP and he said my lessions haven't changes but, my THS levels should be under 4 and the were over 50..He said this is what is causing my migraines and my thought prosses turning to mush again.
I asked out right if this could be or could turn cancer. His answer was no.

Here is where you all come in to play. Am I right in thinking this shouldn't keep happening? I know I should be more educated on all of this, but, I'm not and have just kind of gone with the flow and never really taken it all that seriously. I have to be honest, I'm starting to scare myself with all the what nows.
I forgot to mention, I have seen an Endo. But, my PCP seems to take things alot more seriously then the Endo. I trust my PCP with my life. The Endo is more interested in what my ins. company will or will not pay for. And he was always well let's just wait and see.

Any help at this point would be greatly appreciated.

[Christine]

IMALOVINDISNEY--

I'll try my best to explain what I think happened to you.

First off, I want to explain what TSH is. It is Thyroid Stimulating Hormone. It is a hormone made by the pituitary gland in your brain. It is not an actual thyroid hormone but its measurement is a reflection of how well your thyroid is working. Think of your thyroid gland as a horse and think of the pituitary gland as the rider/driver/jockey of the horse. If the horse (thyroid) slows down, the jockey chides the horse/whips the horse (i.e., produces more TSH) to get the horse (thyroid moving). If the horse (thyroid) is galloping, the jockey will slow the horse down by pulling back on the reins (stopping TSH altogether).

So, the summary of that comparison is:

If your thyroid is pushiing out too much hormone, your pituitary gland stops stimulating it in an attempt to slow it down. This equals a very LOW TSH. Hyperthyroidism can cause some people to have a TSH measurement of 0.

When your thyroid gland is sluggish, the pituitary gland pumps out a lot of TSH to try to stimulate the gland so if you are HYPOthyroid (low) then your TSH will be high.

LOW TSH = HIGH THYROID or HYPERTHYROIDSISM
HIGH TSH = LOW THYROID or HYPOTHYROIDISM

It sounds to me that in your younger days, you were hyperthyroid. That is the ONLY reason they would have given you the RAI pill--to try to destroy your gland so you would stop putting out so much hormone.

It looks as though after your second RAI, it really work and now your thyroid is dead; hence, the TSH reading of 50. You are fairly severely hypothyroid. No wonder you feel awful.

You need to definitely take your Synthroid and you will feel better once you get your TSH down to around 2.0. Which is the ideal TSH for pregnancies I am told.

[Terri5176]

Hello -


I've been reading this thread - with alot of interest. I believe I've got some sort of thyroid issue, and am waiting for my doctor's appointment to talk about it.

I'm 50 (ouch) and have been menopausal for quite a while. I had my symptoms under control with an OTC med - Estroven. Then - it seemed - overnight my symptoms went crazy. I have hot flashes continually. Not night sweats - but waking up HOT. When I'm not dying of the heat - I am ice cold.

My weight has gone crazy - that seemed to happen overnight as well. I added 30 pounds with no effort. I'm trying to get rid of it - working out 4 - 5 days a week, 2 - 2/2 hours each time. No change, in fact I continue to gain. I'm training for half marathons - completed one in June, have a few more scheduled this year, then Goofy in January. I do okay, but the hot flashes are really tough during exercise.

My eyesight is horrible, my hair is thinning, and I ACHE. I can't remember anything anymore.

My mother had benign tumors on her thyroid - it was removed (this was in 1963?) and was on meds from then on. (side note - Synthroid never worked right for her - she had a cow based replacement?)

It's hard - I don't know how much of this is due to menopause, and how much is due to something else. I'm tired of people looking at me like I eat too much.....



Terri

[Christine]

Teri,

Have you had a thyroid panel (bloodwork) done. Many/most of your symptoms for sure can be attributed to perimenopausal stuff that just gets worse and worse until you actual go through meno. My mother had a ROUGH time and many women I know have exactly the same issues as you. An aquaintance I have has been struggling for 2 years now and finally had to go on prescription HRT because her quality of life was so impacted.

The weight gain (especially through the abdomen) seems to be normal. My mom really packed on the pounds and has a very hard time shedding them. I have read that a low-carb diet works particularly well for the menopausal weight gain.

I would not rule out thyroid and it's easy enough to check if it is contributing to your issues.

Your mom was probably taking Armour Thyroid which is made from dessicated pig thyroids. I do think some older medicines were made from cows.

[Terri5176]

Hi Christine -


I had a panel done probably 5 - 6 years ago, and was told I was "borderline" hypo.

I struggle with the idea of HRT too - but I guess that's just me. I couldn't take the pill because of the effect it had on my mood. (the last time I tried - to help with severe pain - I ended up screaming at my boss....). But I'v reached the point that I can't take any of this too much longer....

The reason I'm thinking thyroid is a "feeling" that there's something in my throat? Not that it's difficult to swallow, just that there's something "there".



Does that make any sense?



Thanks -


Terri

[Christine]

Hi Christine -


I had a panel done probably 5 - 6 years ago, and was told I was "borderline" hypo.

I struggle with the idea of HRT too - but I guess that's just me. I couldn't take the pill because of the effect it had on my mood. (the last time I tried - to help with severe pain - I ended up screaming at my boss....). But I'v reached the point that I can't take any of this too much longer....

The reason I'm thinking thyroid is a "feeling" that there's something in my throat? Not that it's difficult to swallow, just that there's something "there".



Does that make any sense?



Thanks -


Terri

Yes, it makes perfect sense. And given your familial history with thyroid nodules, you could very well be having problems. Borderline hypo 5-6 years ago is now considered hypo as they lowered the threshhold for what is considered hypo. I believe any TSH reading over 3.5 is now hypo. That number used to be 5.0. Some labs have changed their reporting and some haven't. I think it is worth it for you to go get testing again and to probably have your neck palpated by someone who knows. You could also have some nodules and they are pressing on your throat. That is a very common symptom of that--feeling that pressure.

[Terri5176]

I have an appointment with my OB/Gyn on the 18th (ever try to get a quick appointment?) but I'm thinking of going to the regular group to get tested. It's too bad that these days it's harder to get a doctor that *knows* you - it's always someone who is in a hurry, and doesn't really listen.



Terri

[chocovrdmicears]

Hi there! I have some questions that I was hoping someone might be able to help me.. I am just so upset right now...I just don't know what to do. :sad1:

6 months ago I was diagnosed with hypothyroidism. My inital bloodwork came back with a level of 32!:eek:
I was put on levothyroxine. (can't remember the dosage).
6 weeks later my level tested at 31. :sad2:
They increased the dosage.
6-7 weeks later my level tested at 11. Still not great..but obviously better.
They increased my dosage to 112mcg which I have been taking for the past 2 months. I just had my blood drawn Friday and I got the results back today.
My levels are now at 43! I just am so blown away that it is now more than where it started! How is this possible? I am trying to get an appointment with my endroc. but she will be leaving for vacation next week so i am not sure I can see her until she gets back. I just don't understand! Does anyone have any thoughts or ideas how my level can increase so much after being on medication for all these months? What should I do now? I am so upset...I just can't believe it. :sad1:
Any thoughts or suggestions would be greatly appreciated!

[angwill]

I don't know what is going on with you personally. I can only speak of why my TSH level went up drastically and appearantly for no reason in the past. I was taking multi vitamins with iron. Apparently iron is not a good mix with thyroid medicines. There are also certain foods that could effect the level. Now my aunt who has hypothyroidism takes her multivitamin with her sythroid every day and never had it happen to her so I suppose it varies person to person. I bought centrum silver (only medicine for the elderly has no iron in it) and have not had that problem since and my level went back in line when I stopped taking my multi vitamin. HTH

[Christine]

A couple of thoughts to choco:

1. Make sure you take your thyroid medication everyday on an empty stomach. Do not change how you take it otherwise you will get variances.

2. As the other poster mentioned, do not take iron for several hours before or after your thyroid medication. Iron binds with the thyroid hormones and it cannot be utilized by the body.

3. Other things can interfere with thyroid hormones, calcium being one of them. Just make sure the meds are taken AWAY from anything else.

4. Make sure that despite whatever dosage changes your doctor is prescribing, that you are sticking with the SAME brand of thyroid medication. It is proven that generic thyroid hormone has wide variances between the different companies that make them. You must be sure that you stick with the same manufacturer or you will have a very hard time getting regulated. This is not to say that you cannot take a generic one; however, make sure that the generic is made by the same company. For instance, you don't want to get 112 mg of Levothyroxine made by Sandoz one month and then your next month's supply comes from Forest Pharmaceuticals. It won't be the same. Does that make sense?

5. Thyroid medication is VERY sensitive to heat and time. If you got an 'old' batch or your medication was exposed to heat (in the car, mailbox, bathroom, etc) it may be less effective for that vial. I would look at the medication for the month prior to your TSH shooting back up. Was it different in some way?

6. Lastly, you may be doing everything perfectly with the meds; however, if you have something like Hashimoto's thyroiditis, your gland is going to function erratically. For the month that your TSH went down to 11, maybe your gland worked a little bit and put out some thyroid hormone. On the month it shot back up, maybe your thyroid gland decided not to work. It is very hard dealing with a dying thyroid gland. Lots of ups and downs.

[chocovrdmicears]

Thank you so much for the info! Christine, you taught me many things! I had no idea that the medication itself could be so *sensitive*. I don't take any other medications/vitamins and I always take it the same time, every morning, on an empty stomach. I guess I just assumed that I would take the medication, and I would get better! :confused3 silly me! lol! I had no idea that this was going to be such a long and unpredictable road. :sad2: The good news is that my Dr. called and will see me tomorrow morning. Thanks to your information I now have some specific questions to ask. Wish me luck! And thank you again for taking the time to help me. :flower3:

[tpmpro687]

I think this is an awsome site. We are checking in Old Key West on the 22nd of Aug. We are going this year to celebrate being cancer free. I have had nodules for over a year and a half. I had biopsys done christmas eve and Jan 3. they called to tell me that they were cancer. The doctor at the time who was home on maturnity leave called said not a big emergancy just don't sit on it that it was non aggressive. If i had any question to call the office. After I pulled my self together the next day I called with a recomendation another doctor. I went and saw Dr. Lee and Jan 2th I had my surgury. He came out and told my husband that it was a good thing I didn't wait that it was moderate aggressive. They had to remove one of my paraglands and some of the lympth gland as well because it started to spread. I was in the hospital for 6 nights and 7 days. They couldn't get my calcium level regulated. From the surgury I have a paraylized right vocal cord. They gave me 5% of getting my true voice back. Right now I sound like Minnie mouse (thats what my husband and lot of people say) I had to one round of radiation in March. March 19th I was told I was cancer free. My husband asked me before surgury what I wanted when everything turned out to be okay and I told him I wanted to go to Disney with him and my 2 sons and we are a week and 3 days away.

[luvmarypoppins]

I think this is an awsome site. We are checking in Old Key West on the 22nd of Aug. We are going this year to celebrate being cancer free. I have had nodules for over a year and a half. I had biopsys done christmas eve and Jan 3. they called to tell me that they were cancer. The doctor at the time who was home on maturnity leave called said not a big emergancy just don't sit on it that it was non aggressive. If i had any question to call the office. After I pulled my self together the next day I called with a recomendation another doctor. I went and saw Dr. Lee and Jan 2th I had my surgury. He came out and told my husband that it was a good thing I didn't wait that it was moderate aggressive. They had to remove one of my paraglands and some of the lympth gland as well because it started to spread. I was in the hospital for 6 nights and 7 days. They couldn't get my calcium level regulated. From the surgury I have a paraylized right vocal cord. They gave me 5% of getting my true voice back. Right now I sound like Minnie mouse (thats what my husband and lot of people say) I had to one round of radiation in March. March 19th I was told I was cancer free. My husband asked me before surgury what I wanted when everything turned out to be okay and I told him I wanted to go to Disney with him and my 2 sons and we are a week and 3 days away.


Thats a great reason to celebrate! If I could ask you a couple of ?? How many lymph nodes did you have out? I had 47 out and 6 had cancer. Did you dr. tell you what the agressive component was? Mine is really agressive I think. The hosp. only has 1 to 2 patients a year with mine - columnar cell variant. What was your radiation dose? I had 200. Did they mention anything to you about injecting foam into your neck to help the vocal chord. I have 1 that they say is weak and my voice is bad sometimes. But also I am attributing that to the other surgeries I have had this year (bad, but not related to the cancer). Everytime they stick the breathing tube down me I take a step backwards etc. Do you have any neck/shoulder pain etc? I not only had the neck dissection but then my jugular vein burst and I almost died so that digging and cutting has messed me up alot too. Cant feel the ear, cant lift the shoulder that well etc. What did you think of the Low Iodine Diet. I have to do it again next year in prep for the scan they told me etc.

Any info would be helpful, thanks.

[DisMomme]

Does anyone take their thyroid meds at night? I love my sleep in the morning and have worked my AM routine to allow me to sleep in. Therefore I am eating breakfast within 20 min. of waking. Even if I took my meds as soon as I wake up it won't be on an empty stomach long enough for it to work. I also take calcium and Vitamin D pills with my meals. I am thinking I can either take my thyroid meds at night right before bed or set an alarm for 5AM, take the pill and go beck to sleep (hopefully). Which is better?

[chocovrdmicears]

Does anyone take their thyroid meds at night? I love my sleep in the morning and have worked my AM routine to allow me to sleep in. Therefore I am eating breakfast within 20 min. of waking. Even if I took my meds as soon as I wake up it won't be on an empty stomach long enough for it to work. I also take calcium and Vitamin D pills with my meals. I am thinking I can either take my thyroid meds at night right before bed or set an alarm for 5AM, take the pill and go beck to sleep (hopefully). Which is better?

My first test came back in the 30's...next blood test they were down to 11...six weeks later they were up to 42:eek:. On my doctors advice I have been taking my medication 1 hour before I even have my coffee in the morning. I have been getting up at 5:00 am every day for 6 weeks! yikes! I just had my blood drawn last Friday and am anxiously awaiting the results. I will let you know if the early hour made a difference!
:)

[5lilfish]

I posted this on the community board and was directed over here. I feel a little bit better than I did when Iposted this but I still have all the symptoms to varying degrees.

I was just diagnosed with Hashimoto's Disease after 9 months of suffering from a whacky list of symptoms...and having various other scary things ruled out (MRI's, EMG, bloodword). I've had muscle cramping/twitching/fatigue, mental fog, general overwhelming fatigue, puffy face, throat issues (tightness, hoarseness, sore), and some other things.

I am happy to have some answers. On top of Hashimoto's disease, I am a bit anemic and I have low Vitamin D levels (26, I believe). I've been on a small dose of Lev-something for about 3 weeks now (small dose because while my antibodies are high, my thyroid levels are still ok). I have to say I feel crappy. I am exhausted and just plain do not feel well. There are times I just have to lie down and sleep and there are times I feel like I have been run over by a truck. Also, the muscle fatigue is sometimes horrible...in my arms especially. The worst part, in terms of being annoying and worrisome, is my throat. It just feels tight and like something is pushing on it. It's worse if I lie back. It also affects my talking sometimes.

Is this typical? my levels will be re-tested in a month. Will this get better...because right now this really stinks. I have 5 kids and NO energy. It's beginning to get me down. Also...is it normal for the symptoms to come and go?

Thanks..
Jess

[Babypandaroo]

I was just recently taking my synthroid medicine at night too and it doesn't seem to be helping. I am still tired alot and my doctor put me on iron tablets and vitamin c a month or so ago. I still feel like i could sleep for a week. What is the best time for my synthroid tablet? Mind you im not a morning person and my breakfast is usually later

[jennz]

I usually take my med in the middle of the night when I get up to go to the bathroom :) The instructions are 1 hour before eating or 2 hours after eating, so I would say if you haven't eaten 2 hours before bed you're okay. I think (and it's just my thought here....) they say first thing in the morning to make sure it's on an empty stomach.

[kathleena]

Some general comments on recent posts:

Time of day doesn't matter. What does matter is what you eat. Wait one hour after taking the pill and wait 2 hours after eating, just like the person before me said.

Synthroid (or levothyroxine, Levoxyl) is not fast acting with regards to symptoms. This is why you have to wait 6-8 weeks for a re-test, to allow your body time to adjust. The TSH level is very slow to respond.

Symptoms lag behind the numbers. What you feel today may be a result of your condition 6, 8 10, 12 weeks ago. This is not a quick fix, you have to give it time.

When the doctor tells you "it's normal" what is the number? Ask them what the TSH is and ask them what the lab range is. Ask for a copy of your test *every time* and record your own numbers in a spreadsheet. If the lab range is .5-4.5 and your number is over 3.0, your doc is out of touch. The endos want the PCPs to treat when over 3.0 to bring it back down closer to 1.5. When I was at 3.3, my doc started me on .25 lebvothyroxine - the smallest dose. I was on it for 1 year and averaged around 1.7-2.0. Then the numbers went up to 3.0 again, and we raised it to .5. Then to .75. Now I'm normalized on .75 to just below 2.0.

Most people who are very sensitive to TSH (not everyone is) feel best if the number is below 2. You need to determine this yourself, but remember - symptoms lag behind. Do not expect a miracle drug here!

The brand you take may have different fillers. You may do better on a different brand. If you go thru three blood tests and your TSH has normalized below 2 and you still feel crappy, as the dr to change the med. It may take a bit to normalize again.

Hope this helps someone.

PS just for credentials - I doctor hopped for 8 years before I found one who would treat my TSH which went from 2.6 to 4.9 during that time. Finally diagnosed with hypothyroid, it was too late. Within two years I was hyperthyroid. I have TSI antibodies which cause Graves disease. Being hypo for so long made them skyrocket. I was 2 years on hyperthyroid meds and then once off for a year, I was stable at around 3.3. But the antibodies were rising again. I had been told that if TSH was kept as close to 1.5 as possible, the antibodies should fall. Four years later and antibodies have fallen from 400 down to 120. They were at 440 before when I went hyper. Thank God I have a great doc who understands and is willing to treat me at a lower number. What is happening with my thyroid is it is slowly dying.

[tigercat]

I am new on this thread. I am at a loss right now with my meds. I have Hashimoto's disease. I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years. I have been on Levothyroxine but get Eltroxin. Not sure if that is a generic brand or not. For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach. I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness. Nothing has come up. She tells me I am fine. Well if I am fine why do I get these things???? Now I looked at the sheet the pharmacy gave me and those symptoms are things you should look for. I am nervous about going to the Dr about this as I am sure that she will fluff it off. Can these symptoms be a cause of the meds I am on?
tigercat

[KCmike]

My wife was diagnosed with thyroid cancer. They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old). So she had a biopsy by needle and it came back as papillary cancer on one of the nodules. We are both scared. We have three children and consider ourselves still relatively young. We have scheduled the surgery to take out her entire thryoid in two weeks. We have heard that the success rate is very good with this type of cancer. I would be interested in hearing from anyone who has gone through this or a good website for information. I appreciate everyones time for reading this post.

[jennz]

I am new on this thread. I am at a loss right now with my meds. I have Hashimoto's disease. I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years. I have been on Levothyroxine but get Eltroxin. Not sure if that is a generic brand or not. For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach. I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness. Nothing has come up. She tells me I am fine. Well if I am fine why do I get these things???? Now I looked at the sheet the pharmacy gave me and those symptoms are things you should look for. I am nervous about going to the Dr about this as I am sure that she will fluff it off. Can these symptoms be a cause of the meds I am on?
tigercat

Are you going to an endo? I would suggest trying another doctor...:hug:

[jennz]

My wife was diagnosed with thyroid cancer. They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old). So she had a biopsy by needle and it came back as papillary cancer on one of the nodules. We are both scared. We have three children and consider ourselves still relatively young. We have scheduled the surgery to take out her entire thryoid in two weeks. We have heard that the success rate is very good with this type of cancer. I would be interested in hearing from anyone who has gone through this or a good website for information. I appreciate everyones time for reading this post.

KCmike...:hug: for you and your wife and family. I had this type of cancer as well, I was 26 at the time. (That was 18 years ago). Get used to hearing "If you're going to have cancer this is type to have." I heard that all the time. There is a very good success rate, you're correct, but it's still the Big C and very scary, at least to me. The surgery itself wasn't too bad. Will she have radiation after? The hardest part, for me, was getting my thyroid meds adjusted. That takes months. Is she seeing an endo?

[KCmike]

KCmike...:hug: for you and your wife and family. I had this type of cancer as well, I was 26 at the time. (That was 18 years ago). Get used to hearing "If you're going to have cancer this is type to have." I heard that all the time. There is a very good success rate, you're correct, but it's still the Big C and very scary, at least to me. The surgery itself wasn't too bad. Will she have radiation after? The hardest part, for me, was getting my thyroid meds adjusted. That takes months. Is she seeing an endo?

We were told to wait till after the surgery. She will have the iodine treatment about six weeks after the surgery the surgeon said. Did it ever come back for you? Did you have your entire thryoid taken out?

Thanks.

[jennz]

No the cancer never came back, but I still have checks. Yes I had my entire thyroid removed and then had radiation. I didn't get sick from the radiation, but it was a high dose and I had to stay in the hospital until I wasn't radioactive anymore. ;) It was for a few nights. I don't know if they still treat it like that. My endo keeps my TSH levels low so that any remaining thyroid cells aren't stimulated (this is common practice w/thryoid cancer patients).

I hope that helps...feel free to ask any other questions here or pm or email me. I know this is a scary time for you all.:grouphug:

[luvmarypoppins]

We were told to wait till after the surgery. She will have the iodine treatment about six weeks after the surgery the surgeon said. Did it ever come back for you? Did you have your entire thryoid taken out?

Thanks.

Hi Mike, I know you can't read the whole thread. The thyca web site is good. It also has the low iodine diet that you have to use before radiation on it. My diet was a little different from that as my rad. onc. does the NIH diet and something else really strict combined etc. My whole thyroid came out. They will tell you the stage 1-4. Its based on age also, so your wifes age is great. I am the exception to the rule. My tumor was 12,5 centimeters, huge they told me and already spread to the lymph nodes, Papillary is the best to have and that is what I have too. Unfortunately I have the rare and agressive columnar cell variant so they just have to watch and wait. The endo. told me she thinks it will come back and the rad. onc. says they will just give me more radiation etc. The regular dose is 150 and I got 200. Your kids really need to stay away from your wife for the radiation week at home. Our 3 ds knew the limits etc. You can have her use rubber gloves if she wants to touch the computer keyboard or tv remote etc. Maybe send them to grandparents, neighbors etc. I only had to have my synthroid adjusted once after surgery. I started out 150 and now have 200. I will only take the name brand because of what I read on these boards and I asked the endo etc. Your wife has alot on her side age, caught early etc. Best of luck and tell her to join in when she feels better.

[tigercat]

No I am not going to an endo. My Dr doesn't think my thryroid is that bad. I am not sure how bad it is suppose to get before you see a specialist. She just keeps telling me it is probably stress. Everything is stress.
tigercat

[angwill]

I am new on this thread. I am at a loss right now with my meds. I have Hashimoto's disease. I was diagnosed about 10 years ago with that but have been dealing with it I believe for 30 years. I have been on Levothyroxine but get Eltroxin. Not sure if that is a generic brand or not. For several years I have been having a problem breathing when I do things, gaining weight even though watching what I eat and trying to exercise, chest pains, dizzyness, nausea, and a rash on my stomach. I have gone to the Dr. about each one of them and have had my lungs tested, a couple of heart tests, a test on my head about the dizzyness. Nothing has come up. She tells me I am fine. Well if I am fine why do I get these things???? Now I looked at the sheet the pharmacy gave me and those symptoms are things you should look for. I am nervous about going to the Dr about this as I am sure that she will fluff it off. Can these symptoms be a cause of the meds I am on?
tigercat

I would suggest finding a new doctor. If you don't trust or believe in them then it's time to move on.

Levothyroxine is the generic version of synthroid so I don't know if the Eltroxine is a brand name?

Your symptoms can be a sign of lots of different things including stress or anxiety so I suppose that is why your doctor tested you for other things. It is good she tested your heart and head rule out something else going on.

I am not a doctor but the symptoms of chest pains, dizzyness, and nausea would be there if you had hyperthyroidism because your body functions would be faster rather than slower with hypothyroidism. This your doctor would know by testing your TSH level. If you thyroid level is within limits your doctor would not think it a symptom of your thyroid. Do you go back and forth with both hypo and hyperthyroidism?

As for the rash and breathing problems I don't know of those being symptoms that should be watched for in hypothyroidism.

I hope you figure out what is going on with you soon.

[Christine]

My wife was diagnosed with thyroid cancer. They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old). So she had a biopsy by needle and it came back as papillary cancer on one of the nodules. We are both scared. We have three children and consider ourselves still relatively young. We have scheduled the surgery to take out her entire thryoid in two weeks. We have heard that the success rate is very good with this type of cancer. I would be interested in hearing from anyone who has gone through this or a good website for information. I appreciate everyones time for reading this post.


KCMike,

I was diagnosed with thyroid cancer when I was 31. I also had small children and the finding was incidental. I had also just changed doctors and it was picked up during a routine neck exam.

I am 45 years old now and my cancer never came back; however, I will tell you that it took more than one RAI treatment to get rid of all my tissue. My tumor was only 1 cm but my gland was hard to ablate for many reasons. The best website is www.thyca.org. There is also a listserv you can join (follow the support link on the website) that is great. You will got TONS of support there and all your questions answered. I highly recommend doing lots of reading there prior to your wife's surgery and treatment so that you can make sure that you optimize her care and treatment.

[tigercat]

The symptoms that I mentioned are actually mentioned on the sheet the pharmacist gives out with your medication. Since I have been on it for a while I had not received it for years. I had decided to look at it again so went and got a copy from the pharmacist. It listed the breathing problems, chest pains, dizzyness ect. I can't change Dr's as there are only so many Dr's in town and they are all full up. I live in a smaller town and it is a long trip out of town. I am going to my Dr tomorrow so will find out then what she thinks. With Hashimoto's you can go from hypo to hyper.
tigercat

[TinaMcTeer]

Hi everyone. I was just diagnosed today with Hypothyroidism. The Doc said my thyroid isn't working. I am going for my first scan on October 8th. I believe I have had it since 2002. I remember complaining after my daughter was born that I couldn't concentrate along with other things.I just have to say that I am thankful that my new GP saw the signs and recomended getting tested. Something my old GP missed. My GP said they have never seen it in someone so youing. I am 29.

[Christine]

Welcome to the thread!

Most likely your thyroid failure is due to Hashimoto's thyroidities or just a plain old thyroid failure. Hashimoto's is fairly common after a pregnancy. It is an autoimmune disorder where the body begins attacking the thyroid gland. Most thyroid failure isn't due to anything serious, thank goodness.

[TinaMcTeer]

Welcome to the thread!

Most likely your thyroid failure is due to Hashimoto's thyroidities or just a plain old thyroid failure. Hashimoto's is fairly common after a pregnancy. It is an autoimmune disorder where the body begins attacking the thyroid gland. Most thyroid failure isn't due to anything serious, thank goodness.

Thanks Christine.

I am happy to know that I have somewhere to go to when I have questions. I picked up my perscription (Levothyroxine 200mcg) today, although I can't start taking it until after my scan is done on October 9th. My TSH levels are well above 100. I am hopeful that I will feel at least a little better by the time my trip to DW in January. It seems that I can go for about 4 hours before I get really tired. I understand that this is going to be a long road but I at least know the cause of most of the problems that I have been having. Most of all I want to be able to think clearly. I am sure I will have lots of questions and I want to thank you all in advance. (Ugh, Now if only I can get this darn headache to go away)

[Christine]

Your TSH is pretty high!! No wonder you feel so bad. I would say that your gland is in almost complete failure.

I have no gland, due to thyroid cancer, and to prep for a scan I used to have to go off my medication so that I would induce a hypothyroid state. My TSH would go up to 145 after about 6 weeks and I felt ABSOLUTELY dreadful. Fornutately, I only had to function like that for a couple of weeks. How awful for you.

It will take you a long time after your meds to stabilize. You probably won't start to feel anything for about 2 weeks (it has a very long half life and it takes a while to start affecting your body). At 8 weeks you will probably start to get closer to where you need to be and, because you have been so bad off, you may feel great even if your numbers aren't quite there.

Also, since you are so hypo, you may feel jittery for a week or two on the high dose you are starting with.

[bdavis]

I was told that I have Hashimotos disease... a burned up thyroid due to an auto immune problem that caused my white blood cells to attack my thyroid. I apparently have a level of .4 whatever that is... almost at a coma state.. i don't know how I lived with the exhaustion and the inability to think clearly. I honestly thought I was losing my mind. Now I am just scared. I don't know what to expect and so far I have noticed a head ache and dizziness in the mornings.. I'm having a difficult time getting out of the bed and it seems worse than before I took the medicine. I have two kids and now I'm terrified. Will it get better?

[luvmarypoppins]

My wife was diagnosed with thyroid cancer. They found nodules are her neck during a routine exam (really not routine because we switched doctors feeling that we weren't getting time and attention throughout the years and my father died two months ago we sparked both my wife and I to get exams...we are both 40 yrs old). So she had a biopsy by needle and it came back as papillary cancer on one of the nodules. We are both scared. We have three children and consider ourselves still relatively young. We have scheduled the surgery to take out her entire thryoid in two weeks. We have heard that the success rate is very good with this type of cancer. I would be interested in hearing from anyone who has gone through this or a good website for information. I appreciate everyones time for reading this post.

Just wondering how your dw is doing? Hope she is o.k.

[cruisnfamily]

Hi everyone. I was just diagnosed today with Hypothyroidism. The Doc said my thyroid isn't working. I am going for my first scan on October 8th. I believe I have had it since 2002. I remember complaining after my daughter was born that I couldn't concentrate along with other things.I just have to say that I am thankful that my new GP saw the signs and recomended getting tested. Something my old GP missed. My GP said they have never seen it in someone so youing. I am 29.What is a scan?

I have been told I am borderline hypothyroidism. I don't know which number is which but I know it was 4.62 and the range goes to 4.5. My OB/Gyn referred me to my primary for followup. Primary care Dr wants to wait and check again in 6 months.

I've google the symptoms online and from what I can see, the only symptom I have is the irregular periods...but that could be due to my age, 44.
Edited to add: Just read thru some more of the thread and I see "hot flashes" mentioned occasionally. I do get "warm sweaty moments" quite often these days. I've been assuming they're pre-menopausish. OB/GYN says I am definitely not in menopause. But I've had friends describe their actual hot flashes to me and what I'm having doesn't sound at all like what they experience so I don't think they're menopause related anymore. I don't know if this is thyroid related but I thought I would throw it out there in case it's relevant.

I don't know, just looking for comments and feedback from all of you that have this.

[Christine]

Sometimes doctors perform a scan of thyroid gland so they can get an image of it. This is most frequently done when someone has nodules or the gland is an odd size. They give you a small amount of radioactive material in a pill form and they they take pictures of the gland while the radioactive material is in the gland. They are able to see nodules and whether they are "cold" (non functioning) or hot (over functioning). They can also see if areas in the gland accumulate iodine equally. It measures uptake also so they can see how much of the iodine was absorbed and that gives them a clue about functioning.

I'm not sure that it is a common practice for diagnosing hypo/hyper thyroidism, it is mainly used in situations of lumps/bumps.

If you are strictly hypothyroid with no associated autoimmune disorder like Hashimoto's, then your hot flashes should not be attributed to your thyroid condition. If you do have Hashimoto's, this often causes swings in thyroid functions so, technically, if your gland was going beserk one day, you could get hot flashes.

You should also note that, in perimenopause, which I am in also at age 45, hot flashes vary greatly from woman to woman. I mainly get very hot through my face and torso but never below. I also have not actually broken out into a sweat as some report. I just get very red. My coworker has hot flashes that affect her through her hip and thigh area and she gets drenched. So there is no textbook case. Oh, and my last for about an hour versus the quick 5-minute things you read about.

[mrsklamc]

Hi, I'm new here! Didn't realize there was a dedicated thyroid thread. I know some of you have posted on my thread from last friday saying I'd been diagnosed with thyroid cancer. At this point most of my questions have been answered (except finding someone who had a positive experience getting their lymph nodes removed,) but I thought it would be good to dig through this thread; looks like there's wealth of knowledge here.

Micayla

[TinaMcTeer]

Good news. My Scan came back Negitive.:woohoo: So now just taking the meds to make me feel better. It has already been a week and I am amazed at how much more energy I have.

[Christine]

Good news. My Scan came back Negitive.:woohoo: So now just taking the meds to make me feel better. It has already been a week and I am amazed at how much more energy I have.


That's great news!

[mrsklamc]

I hope someone can help me-

I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.

Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?

[luvmarypoppins]

I hope someone can help me-

I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.

Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?

Oh Micayla, I have been thinking about you and praying for you. Did you have a modified radical or a radical neck dissection. I forgot to say before that mine was radical but they kept the salivary gland. I dont even know what that drug is you are mentioning. I was told by the radiation oncologist to keep taking the synthroid so you dont go hypo and then you get the thyrogen shots 2 days before the scan, l on 2 days before and 1 on the day before all while doing the LID. Then I had the scan after the RAI treatment, lfirst I had to go have a blood test like 3 days post RAI and then the scan. I am not sure of the time that involved. I am just saying are you getting the scan before the RAI?? Also if they say its agressive, then you should definetely ask what agressive variant it is, like mine is columnar cell, there is also tall cell, hurthle cell etc. And if its agressive ask them for the lymph node count of cancerous nodes, like mine was something like 47 removed and 6 were cancer positive. Since mine is so rare, (they only have 1 person a year they see, so I'm it) of course I am interested in others etc. and my rad. onc. decided to give me the 200mci as I told you 150 standard and then 25 for the lymph node spreaad and 25 for the agressive variant, so ask your doctors lots of questions . Blessings to you always.

[Christine]

I hope someone can help me-

I had my thyroid and lymph nodes out last Thursday. Recovery has been going really well but they called with pathology last night and said it was aggressive and we shouldn't wait long before the scan, etc.

Before the surgery they told me to start cytomel right away. When I called today they said 'don't take any thyroid replacement.' Of course I said 'what about the cytomel?' they said stop taking it. I'm SO confused. I thought people didn't have to go hypo anymore because of thyrogen. Do I have to be hypo AND low iodine for the scan?


Initially, they like you to be hypo prior to the scan. They are using thyrogen more and more now, but less often with an initial scan. While thyrogen is a wonder drug, it does not have the sensitivity that going hypo does. If you are healthy, you need to go hypo and do your first scan so that they can be sure they are seeing everything they need to. Cytomel is a very short-acting T3 but it does keep the TSH up for a little bit of time. I generally had to be off Cytomel for 2 weeks prior to my TSH getting as low as it could.

I'm sorry to hear of your pathology. Did you get anymore information regarding the type of cells, etc. Why are they calling it aggressive? Please try your best not to worry, even aggressive types have very good outcomes.

[mrsklamc]

thanks so much you guys...what is LID?

I thought that they did the scan before they did the radioactive iodine so they could adjust the dose?

Here is what happened..they did the biopsy on 10/1 and they thought it was papillary in one or two nodes at that time. They did a modified radical neck dissection,they removed only 9 nodes and 7 were cancerous. ( I think that they would have removed more but they were the size of quarters rather than peas, so they were fewer in quantity even though they were still the whole side of my neck. She said she was digging for them from my chin bone all the way down to my collarbone) There are BOTH papillary and follicular cancers, it's my understanding that follicular is more aggressive? The surgeon said that since I am young and recovering well, and the cancer seemed to be growing quickly, she didn't want to see them take 8 weeks to do radioactive iodine- BUT as of yesterday the endo wouldn't even see me to schedule the scan for two weeks. He called me this morning and said he would see me tomorrow. I don't know if he just got around to reading my pathology, or what.

[Christine]

thanks so much you guys...what is LID?

I thought that they did the scan before they did the radioactive iodine so they could adjust the dose?

Here is what happened..they did the biopsy on 10/1 and they thought it was papillary in one or two nodes at that time. They did a modified radical neck dissection,they removed only 9 nodes and 7 were cancerous. ( I think that they would have removed more but they were the size of quarters rather than peas, so they were fewer in quantity even though they were still the whole side of my neck. She said she was digging for them from my chin bone all the way down to my collarbone) There are BOTH papillary and follicular cancers, it's my understanding that follicular is more aggressive? The surgeon said that since I am young and recovering well, and the cancer seemed to be growing quickly, she didn't want to see them take 8 weeks to do radioactive iodine- BUT as of yesterday the endo wouldn't even see me to schedule the scan for two weeks. He called me this morning and said he would see me tomorrow. I don't know if he just got around to reading my pathology, or what.

Oh, okay. Quite honestly, a mixed follicular-papillary is fairly common. Follicular *can* be a bit more aggressive but not really, it's just a bit different than sleepy, old papillary. When you said "aggressive" I thought there may have been some "tall cell variant" but you have not mentioned that. I do know several with tall cell and it's a little more aggressive but they are doing okay too! I believe luvmarypoppins is dealing with columnar variant of papillary which is pretty rare?

Your doc is just probably more concerned about the lymph node positivity than anything but if you read the thyroid cancer literature you will note that positive lymph node involvement has no worse outcome than no lymph node involvement. The RAI is pretty good at taking care of that.

The LID = Low Iodine Diet.

Generally, many good thyroid docs/nuclear med specialists do NOT like to give a 'tracer' dose of RAI to determine how much to use. This is because even a small amount of iodine in the tracer dose will "stun" your thyroid cells so that when you get a treatment dose, they cells are less avid for iodine and won't take it up as well, thereby, making your treatment dose less effective.

Standard protocol is to get you hypo, get you iodine starved, and with lymph node involvement, give you about 200 mci of RAI. About 10 days after you receive that big dose, they will do a whole body scan to determine if the cancer went anywhere distant (tracer doses don't show that well at all). They will also get a good idea what your uptake was of the big dose. THEN a year later (usually), they will have you do the LID again. They may or may not make you go hypo (and use Thyrogen instead). They will give you a small dose of RAI and see if the thyroid cancer that they blasted this year is gone. So, you don't really know if your "clear" until a year later.

[mrsklamc]

Ok this may help me make a lot of sense of things then,

See, it's the surgeon who was telling me about the tracer dose and also who told me that it would then depend how long until we tried to conceive based on the radiation dose. The endocrinologist said it would be a flat 12 months, and also his assistant was telling us yesterday that they *couldn't* move the scan up any closer than six weeks, so maybe this reversed order from the surgeon is where things got confused.

Does it make sense that they would want me to be off thyroid replacements for 6 weeks? Should I expect to be getting fat and be sad and tired for that six weeks?

[mrsklamc]

Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?

[luvmarypoppins]

The nurse who gave me my thyrogen shots told me, oh this stuff is really expensive and some ins. *** dont like to pay for it, You are getting it because of what you have been through, after the cancer I got a bowel obstruction, lost another 12 lbs, had a resection etc. She said they usually only use this in older people etc. I did read on my hosp. website that they just seem to use thyrogen as standard etc. I have already been told I am having the diet and scan again in the spring, so I would say at least 12 months min. for the family. And they will make you take a pregnancy blood test before the RAI, its standard. Also if you are getting 200, are you staying in the hosp. or at home etc. I know some states have laws etc. I stayed in the hosp. My dh works with radiation and he knew how "hot" I really was.

I lost 20 lbs. in 2 weeks on the LID. mine was a combo of the NIH LID and other stuff. My rad. onc. is pretty strict and I was assigned a nutritionist from the hosp. Its weird stuff, like basmati rice, no potatoe skins, no dairy, no bread with bromated agents, no canned veg or frozen either, but I did see I could have only plain Birdseye Steamfresh, a lifesaver. I used no yolk egg noodles. I also could have Edys raspberry sorbet so that was good. I am glad I was too nauseous to eat food the last thyrogen shot because I was so sick of lettuce etc. I also just bought a lb. package of meat, since I could only have 4 ounces twice a day, I knew that would last for 4 meals etc. Also I would say pig out on anything that is your favorite now so you wont feel like so much in denial later etc.

I am just wondering and maybe christine could answer this - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!

[Christine]

Does it make sense that they would want me to be off thyroid replacements for 6 weeks? Should I expect to be getting fat and be sad and tired for that six weeks?

Perfect sense. That is how long it takes for your thyroid hormone to leave your body and for your TSH to go high enough to make a treatment worthwhile.

The first time I went hypo (I was 31) I worked up until the day I had treatment and I gained maybe 3 pounds (the first time is the easiest). I never got that sad/depressed or fat on the 4 times I went hypo, although I did feel pretty bad at the end and I did start to get really paranoid about the scan.

[Christine]

Also-when you go hypo, does anything HELP? Like, sometimes when people are depressed they say exercise and healthy diet can help cope. Do things like this help AT ALL with hypo or are you just fat and sad and unenergetic and there's nothing you can do but wait it out? Does it matter if you eat healthy or junky food or do you just pile on pounds no matter what?


Most people do well with the weight gain when the follow the LID. I think I lost 8 lbs when I did it (I was using Thyrogen though). Otherwise, I didn't really gain a lot of weight and wasn't overly sad. I just felt REALLY lethargic and slow. I couldn't sleep well and I was restless.

[Christine]

I am just wondering and maybe christine could answer this - maybe its just something each surgeon decides, but Micayla you said about the 9 lymph nodes and 7 were cancerous, so I had 47 and 6 were cancerous. I am just wondering why my surgeon decided to take so many out? He did tell my dh "Oh I just decided to take everything out I know they want a wide margin, any comment christine??Tia. Blessings to you Micayla, and hang in there, we gotta fight tough!!


Probably because of the size of your tumor and what they saw when they went in, they decided to do a "radical" neck dissection. My friend had that when they found out he had tall cell variant. Standard procedure is to take out a few. Believe it or not, when I had mine done it was not standard procedure to take any out. So I didn't not have a lymph node check. I could have very well had node involvement but I'll never know. I know when I went back in for my completion thyroidectomy, one node close to the area was enlarged so they removed it but it was fine. It was enlarged because of the previous surgery. If I did have it in my nodes, the RAI took care of it.

As for your comments on Thyrogen, more doctors are using it as standard. I don't know how comfy I am with that because in trial after trial, it doesn't do as well as going hypo. I think in Micayla's case, I am happy they are making her go hypo. But in many cases, using Thyrogen is a blessing and certainly in cases where going hypo can aggravate the cancer you would want to use Thyrogen. It is a very careful balance.

To answer Micayla's question about the conceiving issue, I didn't pay much attention to that because I had just had my second child when I was diagnosed (that SUCKED!!) and that pretty much did me in for awhile. I never planned on 3 kids and my diagnosed clinched the decision. Many people on the thyca listserv have gone on to conceive and have kids. You might want to post there as you will probably get a lot of good feedback there.

[stric12345]

I have been suffering with fatigue, facial flushing, and muscle and joint pain for months. I had a TSH done, and it was 3.17. The normal range is 0.03-5.0. I have been reading that some doctors believe that the normal range should be lowered to 3.0. I just wondered if anyone has had a TSH similiar to mine and been treated for hypo? Thanks!

[mrsklamc]

Also I would say pig out on anything that is your favorite now so you wont feel like so much in denial later etc.


I have done that pretty much since I got my diagnosis. "I have cancer, I will eat ice cream if I want to!" As for the LID- I have taken to calling it my 'better than chemo' diet. It does start right before Thanksgiving which kind of stinks so we are moving TG to the Sunday before.

[luvmarypoppins]

I have done that pretty much since I got my diagnosis. "I have cancer, I will eat ice cream if I want to!" As for the LID- I have taken to calling it my 'better than chemo' diet. It does start right before Thanksgiving which kind of stinks so we are moving TG to the Sunday before.

I was doing it during easter and then one night I had to go to a catered dinner for my churchs 40th anniv. at a restraunt. It was a buffet!! I ate before and just brought fruit with me and gingerale. They sat us at a table the farthest from the food, sweet of them. Just wondering if they gave you a list of foods you CAN eat. My dietician told me she was working on one since everyone compalined that even with the thyca stuff, our own diet had things that were not allowed etc. They gave us a list of that stuff. I am seeing the rad. onc. in 2 weeks. I am going to ask her about what christine said about the hypo/versus thyrogen etc. and I am seeing if she got any more patients that have the same cancer variant as me. I doubt it though. I guess we will discuss my next scan and lid which should be in the spring. Last time she said I was doing great. Do you know what your radiation dosage is going to be??

[Christine]

I am going to ask her about what christine said about the hypo/versus thyrogen etc. and I am seeing if she got any more patients that have the same cancer variant as me.


luvmarypoppins--

Here are some excerpts from some of the studies done on Thyrogen:

Even when Thyrogen-stimulated Tg testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. Therefore, thyroid hormone withdrawal Tg testing with radioiodine imaging remains the standard diagnostic modality to assess the presence, location and extent of thyroid cancer.

The combination of a Thyrogen-stimulated scan and a serum thyroglobulin test did detect all patients with metastatic disease, although not as sensitive as combination testing performed after patients were withdrawn from thyroid hormone supplements. The Thyrogen-stimulated scan failed to detect remnant and/or cancer localized to the thyroid bed in 16% (20/124) of patients in whom it was detected by a scan after thyroid hormone withdrawal. In addition, the Thyrogen scan failed to detect metastatic disease in 24% (9/38) of patients in whom it was detected by a scan after thyroid hormone withdrawal. Based on these studies, one can conclude that even when Thyrogen-stimulated thyroglobulin testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease.


Putting the above bolded comments aside, using Thyrogen or not using it is not a one-size-fits-all situation. There are many instances, where an aggressive thyroid cancer is present, that actually being off medication for 6 weeks is dangerous to the patient. As you know, not having suppressive doses of thyroid hormone can cause thyroid cancer cells to become very active and they can get moving again. In those cases, Thyrogen would be the EXACT course of treatment.

In cases where the thyroid cancer may be harder to detect, is slow growing and kind of lazy and latent, it is probably best to start out NOT using Thyrogen.

[mrsklamc]

They have not given me a list of things I can eat. I have found a local place that grinds peanut butter straight from nuts and I have some strawberry jam I made myself over the summer, so if I make some bread that's a start.

Endo said he would leave dosing to the nuclear medicine guy but he guessed 120-125 micro curies.

I'm sort of frustrated- the surgeon wrote a letter to the endo saying she thought my Radioactive Iodine should be moved up because I'm healing quickly and well, and in her opinion this is growing fast enough he should get it taken care of. He thinks that there's no way it's growing fast enough that it matters. I'm a little nervous that since he's waiting the dosage won't be high enough and I'll have to do this again in a year and THEN wait another year to try and conceive. But I don't think other endos around here are even accepting other patients so I'm kinda stuck.

[luvmarypoppins]

Christine

I think I am going to print this out and take it to the rad onc. and ask her about it. I know I have a remenant left, and she has said not to worry. I know she has even written a chapter in a thyroid cancer book, I dont know what it was about etc. I wonder what she will say. I'll report back.

[livinlife25]

Wish me luck!! I go in for an ultrasound of my thyroid on tuesday. This is a follow up from a previous ultrasound to see if the nodules they found have grown! So far I have not been on any meds or given any real diagnosis, just that my levels were slightly off previously and the nodules.

[CharityLynn]

Can someone explain the Low Iodine Diet to me, how exactly does it help? I have hypothyroid disease. I was diagnosed 10 years ago after the birth of my first child. It is kind of strange because I can go years and be fine without taking any meds, then bam it all goes haywire.

Well I think it went a bit off and I have gained 30lbs this year, some of that has to be from drinking soda again but it seemd to really pile on over 4-6 months. I am going to the doctors on monday for an unrelated issue but I know my doctor is going to make a comment about my weight and will probably send me for my levels.

I haven't really given my thyroid issues the attention they need. Id on't take my meds I notice I'll remember just after I ate or something like that. I will be picking up my prescription in the morning and will be making a real effort to remember my pill in the mornings.

I noticed the LID talk so I was just curious exactly what does it help/do. I think I'd have a really hard time giving up milk.

TIA,

Charity

[mrsklamc]

TIA,

Charity

I hope you get the help you need, but this won't help you dear. It's for those of us who have cancer, to make our remaining thyroid tissue 'thirsty' for iodine so that the radioactive iodine they then give us kills *all* remaining thyroid tissue. (Your thyroid is the only part of your body that absorbs iodine.)

[Christine]

Christine

I think I am going to print this out and take it to the rad onc. and ask her about it. I know I have a remenant left, and she has said not to worry. I know she has even written a chapter in a thyroid cancer book, I dont know what it was about etc. I wonder what she will say. I'll report back.


luvmarypoppins--Oh doctors just HATE when you bring stuff like this in to them!!

I just want to say that, I believe in your case with your type of cancer, you should probably NOT be off meds and the Thyrogen is your best friend. I understand you wanting the best scan of all, but I think you are one of the candidates for Thyrogen use. I'm sure your doctor is pretty knowledgeable about all the studies and has deemed you to need this.

I think it's important to look at the literature if you are one of those people who does not have access to great medical care, a choice of endos or surgeons who have experience with thyroid cancer, etc. That was the position I was in when first diagnosed. I think you've got yourself with a very knowledgeable team.

[Christine]

They have not given me a list of things I can eat. I have found a local place that grinds peanut butter straight from nuts and I have some strawberry jam I made myself over the summer, so if I make some bread that's a start.

Endo said he would leave dosing to the nuclear medicine guy but he guessed 120-125 micro curies.

I'm sort of frustrated- the surgeon wrote a letter to the endo saying she thought my Radioactive Iodine should be moved up because I'm healing quickly and well, and in her opinion this is growing fast enough he should get it taken care of. He thinks that there's no way it's growing fast enough that it matters. I'm a little nervous that since he's waiting the dosage won't be high enough and I'll have to do this again in a year and THEN wait another year to try and conceive. But I don't think other endos around here are even accepting other patients so I'm kinda stuck.

I will tell you that from my own personal experience, surgeons don't really know the nature of thyroid cancer or how it behaves. They do not study it like the endos do. They go in and remove it...period. I'm not sure how the surgeon would be able to determine that your thyroid cancer is "fast growing" unless your pathology report has an indicator in it that states it is aggressive. Your endo would be the absolute best judge of the nature of your type of cancer and if it warrants immediate treatment. Most types do not and they have been growing in your neck over a period of 10 years or more. In *most* cases thyroid cancer is a very slow grower. Thirty or more years ago, people didn't even follow up with RAI and, honestly, not sure if they've even had worse outcomes.

The way it was explained to me is that surgery is mostly the cure and RAI is the "icing on the cake."

As for food--what types of things are you looking for to eat? Mainly snacks or main meals? I remember one of the tips I got for a sweet tooth was to take a banana and put it in the oven (about 350 degrees, keep the peel on) until it was totally black and hot. Take it out and unpeel it, put it on a plate, and then drizzle it with pure maple syrup. The banana gets carmelized so it's very sweet and rich. It's sort of like a bananas foster! But not quite...;)

[luvmarypoppins]

Christine - I went to the rad. onc. today and asked her about this. She confuses me normally. But I think she understood it and said if its just for a scan she does thyrogen. I think that is all she uses most of the time. I didnt want to say much more to her. I am going to bring that statement and ask the endo when I go next month. She explains everything better to me anyway and she is part of my "team" as they call it. Anyway my rad. onc. is doing some research to write a paper. I dont know if I will be in it or not, she is just doing statistics on paper. Even my dh who works with radiation is confused about what she is trying to prove. Its something about scanning, using thyrogen and radiation precautions after the scan. Well if she proves what she wants maybe I can benefit from it if I am not part of it etc. I am having the scan sometime in June probably. Its 14 months after the rai but she doesnt seem too concerned. She said today I am doing fantastic. I am going to ask the endo if that is o.k. If she doesnt think so, I will call and inquire etc. I go for more blood work in dec. so when I come home from Disney I will see how things are. I was there last year and I didnt even know I had the cancer, but knew I was really sick. Maybe I should call my rad onc. Dr. Thyrogen!!:) Oh and she said she got a few more patients with rare variants. She lumps them together (columnar,tall cell, hurthle etc). Gee I wish I knew who my columnar cell partner this year is!! Maybe I should ask her to write a paper about that!!:)

[m2j]

I had a total thyroidectomy back in August. Immediately after surgery, I was placed on Synthroid. Pathology reports came back as Stage 1 Papillary thyroid cancer. 6 weeks after surgery, I went through LID & RAI Treatment. Last week I was sent to get blood drawn to check my TSH level. The nurse at my endo's office left a message for me yesterday stating that my TSH level was too high and that instead of taking 7 pills a week, now I need to take 6 1/2 pills a week...only a 1/2 pill on Sundays. Today, I recieved my lab report in the mail & it reports that my TSH is low...0.057. This confuses me since the nurse has stated that my levels are too high, but the lab report states that it is low. The only explanation I can think of is that they want my TSH level to be as close to 0 so that I won't have a recurrance of cancer...I've read reports of TSH Supression but my endo has not mentioned it to me. If that's the case, will I be hypo for the rest of my life?
Now I'm worried that I am going to gain more weight. Since all of my thyroid problems began, I have gained weight & can't seem to lose any weight no matter what I try. Based on what I mentioned above, am I in a state of hyper or hypo? Feel like I'm hypo, but the numbers make it seem like I'm hyper. I am soooo confused. Any help would be appreciated!!!!

[luvmarypoppins]

Christine is the expert here. I know she'll pop in when she can. She is a wealth of info and usually answers all my ? too, I know from the com. board she is having some issues with her dd right now, so I hope she cn get those taken care of. Oh the joys of teens/young adults. I can relate to her with that one. I am still learning all this stuff. My endo told me she wants me to be hyper and that the tsh should be close to 0 and as undetectable as possible which mine is. I am having the blood draw in dec. again. I have never gained any weight and actually between the cancer which no one figured out I had I lost about 30 lbs. On the LID I lost another 20 and then I also had to have a bowel resection and there went another 12, so my weight has stayed the same since April. I take 200 synthroid, only the name brand. Can you share your favorite LID receipe. I am doing it again in June for the 1 year follow up scan. Hmm, I will probably drop another 20 again, after thyrogen shot #2 I felt pretty sick enough not to eat last time on day 13 or 14 anyway and then I will pig out after I survive that diet:). Mine is a combo of the thyca and nih and my rad. onc. own stuff. Wishing you all the best.

[jennz]

You are correct you want your TSH levels clos to zero, my endo keeps mine below.1, which technically is too low. But they do this *in case* there are any thyroid cells left, they don't want them stimulated and productive. Your nurse's message is confusing though - if your TSH is too high, then you need more synthroid. :confused3 If they are too low you'll take less, which is what she told you to do. I know it's a balancing act, they was that TSH low but without you getting symptoms of being hyper. Right not you are definitely closer to being hyper than hypo. Some of the symptoms are close. My endo always checks my hands to make sure there are no tremors and asks about heart palpitations, both signs of being hyper.

I've had problems losing weight since my thryoid cancer/removal too. My endo actually told me it shouldn't be related to my thyroid and if anything it should be slightly easier for me to lose weight since I'm slightly hyper. Whatever! It's the only thing the man has said I don't like so I let him slide on it :rotfl2:but I don't believe it - I've heard about too many situations like mine to think it's a coincidence.

Hope that helps!

[m2j]

Thank you luvmarypoppins and jennz! I guess I'm was hoping that my levels would help explain why I have gained so much weight over the past few months...no such luck for me! :rotfl2: My next appointment isn't until Jan, so I'm just going to give it time & get all my questions ready for that appointment!
As far as the LID for me, I can't give you many suggestions for my favorite recipe. I hate to cook so I just ate many fruits and veggies. I struggled through those 11 days and absolutely hated that diet. I was lucky that it was only 11 days, as I've heard that many other people have had to do it longer! If I ever have to do it again, I will definitely do more research on different recipes.
Again, thanks for all your help! I'm so happy I found this thread!

[Christine]

I had a total thyroidectomy back in August. Immediately after surgery, I was placed on Synthroid. Pathology reports came back as Stage 1 Papillary thyroid cancer. 6 weeks after surgery, I went through LID & RAI Treatment. Last week I was sent to get blood drawn to check my TSH level. The nurse at my endo's office left a message for me yesterday stating that my TSH level was too high and that instead of taking 7 pills a week, now I need to take 6 1/2 pills a week...only a 1/2 pill on Sundays. Today, I recieved my lab report in the mail & it reports that my TSH is low...0.057. This confuses me since the nurse has stated that my levels are too high, but the lab report states that it is low. The only explanation I can think of is that they want my TSH level to be as close to 0 so that I won't have a recurrance of cancer...I've read reports of TSH Supression but my endo has not mentioned it to me. If that's the case, will I be hypo for the rest of my life?
Now I'm worried that I am going to gain more weight. Since all of my thyroid problems began, I have gained weight & can't seem to lose any weight no matter what I try. Based on what I mentioned above, am I in a state of hyper or hypo? Feel like I'm hypo, but the numbers make it seem like I'm hyper. I am soooo confused. Any help would be appreciated!!!!

Hello m2j!!!

Sorry I have been away so long. You know I am on the boards but I sometimes forget to check this sub-board. I feel bad about that!

At any rate, your nurse misspoke when she said your TSH was too high. This often "gets" people. What she meant was that your thyroid levels were too high (which makes your TSH low--TSH is not a thyroid hormone). You were probably "too" hyper and they backed you off a bit. I take 5 1/2 pills per week to get mine just right. It's weird how sensitive the medication is.

So you are actually fairly hyper which will make you feel bad. It's a good level to be at for treating thyroid cancer but it is a careful balance between how hyper you can get without feeling like you're going to lose it.

Edited to add: Please don't hate me for this but I've never had any weight issues since my thyroid surgery 14 years ago. Sure, I gained some weight when I was off meds, but once regulated, it came off. If I take too much thyroid hormone I start eating a LOT though. My doc told me that many people can gain while hyper because it makes them have a ravenous appetite. Even though they are burning more calories they aren't burning as much as they eat.

[mrsklamc]

You mean I have to do this again in a year? Argh. Do I have to go hypo for a scan every year?

I start the LID tomorrow, really my only challenge with it is not feeling comfortable with the meat products that are available at the grocery stores. They will say things like 'all natural' but I'm sure they consider salt to be 'natural.'

I'm just beginning to get sort of tired and cranky, and it kinda bothers me because I'm not sure I would be if the tech who does the RAI hadn't told me I *should* be by now, ya know? Oh, the power of suggestion!

[Christine]

You mean I have to do this again in a year? Argh. Do I have to go hypo for a scan every year?

I start the LID tomorrow, really my only challenge with it is not feeling comfortable with the meat products that are available at the grocery stores. They will say things like 'all natural' but I'm sure they consider salt to be 'natural.'

I'm just beginning to get sort of tired and cranky, and it kinda bothers me because I'm not sure I would be if the tech who does the RAI hadn't told me I *should* be by now, ya know? Oh, the power of suggestion!

The protocol has changed about hypo scanning. It used to be that you needed three clean scans the "old" way before they'd let you do Thyrogen. Now I think it is down to just your first scan needing to be a hypo scan.

I was reading just last week that there were some problems with Thyrogen having "debris" in it and some of it was recalled and in some cases the company has asked the doctors to look at the vials before administering? What the heck!!!!! I've pretty much decided that I won't be using it again as I had an adverse reaction to it the third time I used it. Overall though, it really is a godsend.

Oh and tired and cranky is definitely the way going hypo makes you feel. Hang in there!

Edited to add: I had to go to Whole Foods to get some decent checken that wasn't in a sodium solution. More and more regular stores are offering more natural chicken now without the sodium but you do have to be careful. I had no problems with beef though. Pork is kind of difficult.

[mrsklamc]

Oh and tired and cranky is definitely the way going hypo makes you feel. Hang in there!



My poor husband kept asking me yesterday if I was mad at him cause I was quiet and staring off into space. I finally said, "honey, I'm just tired. If I GET mad at you, I will let you know. "

[kathleena]

Your nurse's message is confusing though - if your TSH is too high, then you need more synthroid. :confused3 If they are too low you'll take less, which is what she told you to do. I know it's a balancing act, they was that TSH low but without you getting symptoms of being hyper.

This happens to me all the time. They say it is high because it really means that your thyroid is overactive (or high) although the way the labs are set up they measure TSH and the TSH is low in the lab range. Because TSH is produced by the pituitary they don't say - your pit is low, we have to treat your thryoid. So your thyroid is high, but your pit is low.

So if all they say is high or low - as them so what is the TSH lab range - you mean I'm high in the range or low?

Ya it's confusing.............

[mrsklamc]

Luvmarypoppins- I'm still mostly eating fruits and veggies, have had the 'lunch in foil' a couple times and DH made me guacamole on plain tostadas last night.

I'm not sure I can go to work this week- I was hoping to get all rested over the holiday and I have but I'm not sure I have the tact my job requires- I am blunt at my best and i'm afraid I'll look right at someone and say 'you're an idiot' because I can't think clearly enough for the platitudes.

[luvmarypoppins]

Luvmarypoppins- I'm still mostly eating fruits and veggies, have had the 'lunch in foil' a couple times and DH made me guacamole on plain tostadas last night.

I'm not sure I can go to work this week- I was hoping to get all rested over the holiday and I have but I'm not sure I have the tact my job requires- I am blunt at my best and i'm afraid I'll look right at someone and say 'you're an idiot' because I can't think clearly enough for the platitudes.

Micayla, sending you a :hug:. Honestly I dont know how you are feeling since I didnt go hypo, just had the thyrogen shots because I had already been through soo much they said with the coma, bowel resection etc. I did that lunch in the foil too. I tried to mix the vegs up so it wasnt the same all the time, looked colorful on the plate etc. Tried to be something like they were eating. I made a big batch of pot roast stuff , just the meat,onions potatoes and carrots. That was 1 lb. of meat so that lasted for 4 meals, I did the peanut butter on unsalted matzoh, not great but o..k. did stuff like jelly on orange chicken, snap peas and basmati rice, close to chinese food I could get as possible. etc. I would have liked some air popped corn, but I dont have a popper for that., I did the no yolk noodles so that was o.k. a few times. Since mine was at easter and I couldnt eat ham, I did a pork chop with maple syrup, sweet potatoe etc. I microwaved an apple and put cinnamon on it if I wanted a break from the regular crunching. Hang in there, you're doing great.

[mrsklamc]

Micayla, sending you a :hug:. Honestly I dont know how you are feeling since I didnt go hypo, just had the thyrogen shots because I had already been through soo much they said with the coma, bowel resection etc. I did that lunch in the foil too. I tried to mix the vegs up so it wasnt the same all the time, looked colorful on the plate etc. Tried to be something like they were eating. I made a big batch of pot roast stuff , just the meat,onions potatoes and carrots. That was 1 lb. of meat so that lasted for 4 meals, I did the peanut butter on unsalted matzoh, not great but o..k. did stuff like jelly on orange chicken, snap peas and basmati rice, close to chinese food I could get as possible. etc. I would have liked some air popped corn, but I dont have a popper for that., I did the no yolk noodles so that was o.k. a few times. Since mine was at easter and I couldnt eat ham, I did a pork chop with maple syrup, sweet potatoe etc. I microwaved an apple and put cinnamon on it if I wanted a break from the regular crunching. Hang in there, you're doing great.

Awww. Thanks! I mostly don't care that much about variety right now because I can't seem to care much about...much. I am dragging myself in to work in a few minutes so I can get a few things done in case I don't make it in for the rest of the week.

[Christine]

Awww. Thanks! I mostly don't care that much about variety right now because I can't seem to care much about...much. I am dragging myself in to work in a few minutes so I can get a few things done in case I don't make it in for the rest of the week.

Hang in there!! You are really coming down to the worst part. What you are feeling is SOOO normal. I know that feeling of being tired and just feeling absolutely dull. And it doesn't matter how much rest you get--it just doesn't work.

I am with you on the food. By the end, I just didn't care. I was so worn down, I couldn't really desire any good food. This will be a different experience for you, however, if you ever induce hypo with the Thyrogen shots. You will still feel pretty good so you will sort of care more about your lack of food options!!

I just remember being so tired and lethargic then I ended up eating a lot of oatmeal.

[jennz]

Ditto what Christine said. ;) Being so hypo is horrible, just like being a giant slug. However tv should definitely be able to hold your attention!:lmao:

I've had my last scans with thryogen and am soooooo glad I can do it! No problems at all.

Just remember that this will all be over soon.:hug:

[mrsklamc]

A Co-worker (who I always find condescending anyway) informed me this morning that for her, sometimes it's just mind over matter.

Yes, dear, and YOU have your thyroid. argh.

[jennz]

A Co-worker (who I always find condescending anyway) informed me this morning that for her, sometimes it's just mind over matter.

Yes, dear, and YOU have your thyroid. argh.

Ah lovely...the experts weigh in - always fun right? :sad2: Aren't you glad you can come here and be understood? :hug: :woohoo:

[mrsklamc]

Finally gave in today and didn't go to work. DH said I almost seemed drunk, got in the shower and was in there forever like I didn't know what I was supposed to be doing.

Thought you might find this funny though, if you've had to do this. I found myself staring at a headline at digg.com about a prisoner who had to have a five inch shank removed from...well nevermind where. I stared at it forever trying to figure out how they got the SHARK into the prison.

[rubato]

Hi everyone. I'm new here. I was diagnosed with Hashimotos about 4 years ago. I had a huge nodule and that was being watched for the 4 previous years, but then I gained 40 lbs in between tests and was sleeping for 20 hours a day, losing all my hair. You know, the standard stuff. So, I've been on Synthroid for the last 4 years. I lost the weight, feel better most of the time, and, because we are suppressing my TSH, my nodule is shrinking!!! Yah!

But, I still don't feel fully like myself. Sometimes, I have really good days. Sometimes, I'm living in a fog. I also catch everything. I'm assuming that's because I have an auto-immune disease, but it still sucks.

Anyway, I just wanted to introduce myself. It's good to see the support people are getting on here.:)

[Christine]

Finally gave in today and didn't go to work. DH said I almost seemed drunk, got in the shower and was in there forever like I didn't know what I was supposed to be doing.

Thought you might find this funny though, if you've had to do this. I found myself staring at a headline at digg.com about a prisoner who had to have a five inch shank removed from...well nevermind where. I stared at it forever trying to figure out how they got the SHARK into the prison.

Hey--this happens to me sometimes on the DIS and I'm not even hypo!! The things I *think* those thread titles say--well, I amuse myself sometimes.:)

The good news is--you're still typing relatively well. You should have seen me when I was really hypo. When I went back and read some of the things I typed it was like I was drunk. It's hard to believe that the first time I went hypo I worked right up until my treatment.

[belle&sebastiansmom]

Does anyone with Hashimoto's nodes feel like they are constantly choking when swallowing? Sometimes it just feels like I've got steak stuff in my throat. And if I bend my neck certain ways I feel like I'm choking. I go back to the endo in January. Just wondering if anyone else here has experienced this?

[Christine]

Does anyone with Hashimoto's nodes feel like they are constantly choking when swallowing? Sometimes it just feels like I've got steak stuff in my throat. And if I bend my neck certain ways I feel like I'm choking. I go back to the endo in January. Just wondering if anyone else here has experienced this?


I think that this is a pretty common feeling for anyone with thyroid nodules. When they get to a certain size, they do put pressure on the throat and can impact swallowing. While the nodules are harmless (benign), many people opt to have a thyroidectomy to get rid of that uncomfortable feeling.

[belle&sebastiansmom]

I think that this is a pretty common feeling for anyone with thyroid nodules. When they get to a certain size, they do put pressure on the throat and can impact swallowing. While the nodules are harmless (benign), many people opt to have a thyroidectomy to get rid of that uncomfortable feeling.

My endo has mentioned removing them, since they are getting bigger but, thank God the ultrasound shows never cancerous, but he says that a thyroidectomy on a Hashimoto's gland is one of the most complicated surgeries, he says it's messy.

Anyone had their glands removed for "comfort"?

[Christine]

My endo has mentioned removing them, since they are getting bigger but, thank God the ultrasound shows never cancerous, but he says that a thyroidectomy on a Hashimoto's gland is one of the most complicated surgeries, he says it's messy.

Anyone had their glands removed for "comfort"?

I wondering how an ultrasound can show that something isn't cancer. You know that it can't, right? Have they done a needle biopsy.

Hashimoto's glands are often very vascularized (mine was) and it can be a bloody surgery.

[mrsklamc]

I didn't even know I HAD any swelling prior to being diagnosed w/ cancer a couple months ago and I can't BELIEVE how much more comfortable breathing is after having my thyroid removed. I would huff and puff going up and down stairs- I just thought it was from being a few pounds overweight. Ok, like 25 pounds overweight but not obese.

Anyway, my point it- I know it's scary but I think you should definitely consider it. I don't know where you are but we (DH and I and my MIL the nursing professor) could not have been more pleased and confident w/ my surgeon so if you happen to be near Indy send me a PM.

[rubato]

My endo has mentioned removing them, since they are getting bigger but, thank God the ultrasound shows never cancerous, but he says that a thyroidectomy on a Hashimoto's gland is one of the most complicated surgeries, he says it's messy.

Anyone had their glands removed for "comfort"?


I've debated it. There's nothing like that feeling of not being able to swallow. But, I've had so many surgeries for other things, I'm reluctant to have one that isn't "absolutely necessary". I'm sure you'll do whatever is right for you.

[mrsklamc]

Does anyone know how many days AFTER RAI ablation before I can go off the LID?

[belle&sebastiansmom]

I wondering how an ultrasound can show that something isn't cancer. You know that it can't, right? Have they done a needle biopsy.

Hashimoto's glands are often very vascularized (mine was) and it can be a bloody surgery.

All the endo has ever done is an ultrasound. He says he can tell if a further biopsy is needed based on the color it shows (the hot spots) and the shape. Because he says these things are normal, I've never had a biopsy.

Was the aftermath and recovery of your surgery difficult?

For those that have had the surgery for non-cancer: Do you generally feel better after the diseased glands are removed?

[mrsklamc]

All the endo has ever done is an ultrasound. He says he can tell if a further biopsy is needed based on the color it shows (the hot spots) and the shape. Because he says these things are normal, I've never had a biopsy.

Was the aftermath and recovery of your surgery difficult?

For those that have had the surgery for non-cancer: Do you generally feel better after the diseased glands are removed?

Spots on an ultrasound can be hyper-echoic or hypo-echoic (meaning whether they absorb sound waves or bounce them back. Cancerous cells tend to absorb sound waves ( I think, I might have that backwards) but the only way to tell for sure whether a mass is cancerous is a biopsy.

[luvmarypoppins]

Does anyone know how many days AFTER RAI ablation before I can go off the LID?

I got to go off the day after the radiation. Let me just say you feel so nauseous that you dont feel like eating too much. My rad onc. gave me compazine, but I think zofran would have worked much better. Also I am sure they have gone over all the radiation stuff (precautions) with you. I stayed in the hosp. overnight as my dose was really high. The rad. onc. says people just normally dont do that, well she found out where my dh worked and his background etc. and he(my dh) said I should stay over night since I was so "hot". I think you have to go out for a blood test 2 days after too. My rad. onc. said buy some rubber gloves to touch the remote and computer keyboard with, get rid of the pets for a week, we dont have any etc.

Wisihing you all the best Micayla. Hang in there!! I'm praying for you. Gotta go to church. I might type some more later.

[mrsklamc]

So do people typically have to do the LID diet and a follow up scan every year?

That seems like a lot of rai over a lifetime?

I have read that everyones side effects are different, and it can depend on the dose, so Im praying my dose doesn't have to be as high as yours was, Luvmarypoppins.

[luvmarypoppins]

My rad, onc. told me she will decide what to do with me after my next scan in June, that will be the 2nd one and 1 year follow up. My rad. onc. is too laid back I think. She says - oh just because you are stage 4, dont worry, its just a number, yeah easy for her to say!! She did say this next time will be just a little radiation and 2 days of precautions, it will also be 14 months instead of 1 year and she doesnt seem to care about that either. I talked to someone else and I think its 3 years"? Is this right Christine?? I am hoping that since mine is rare she wont make me some test subject and keep going with this etc. I think 3 would be good and I dont know if it will still contiune but the endo does the blood work every 4 months. My rad. onc. says - so what are you going to do, stop at Burger King! (after I got out of the hosp)

[Christine]

So do people typically have to do the LID diet and a follow up scan every year?

That seems like a lot of rai over a lifetime?

I have read that everyones side effects are different, and it can depend on the dose, so Im praying my dose doesn't have to be as high as yours was, Luvmarypoppins.

I think that for the first few years (or until you have several "clean" scans) you will scan and do the LID annually. After you have your treatment (which will be a big dose of RAI), you will have tracer doses for your annual scans. they are about 2-5 mci per scan (versus 150 to 200 mci for treatment doses).

My schedule went something like this:

Surgery in August 95
Ablation November 95
Whole body post-ablative scan 2 weeks after later (Dec 95)
Follow up scan - June 95 (it was positive for activity so I had a treatment).
Whole body post-ablative scan 2 weeks later
June 96 - Follow up scan (still positive for activity so had treatment)
June 97 - Whole body scan (CLEAN--YIPPEE!!)
June 98 - Whole body scan (CLEAN - YIPPEE)
Doctor says I can wait a few years.
Then Thyrogen gets released. Doctor wants me to know spend my life scanning every year. I told him "NO WAY."
June 2000 - First Thyrogen scan (CLEAN)
June 2003 - Thyrogen scan (CLEAN)
June 2006 - Thyrogen scan (CLEAN--but had reaction to Thyrogen so I won't use anymore).

Next plan is to to come of Synthroid for 2 weeks--just enough to get TSH to raise and do a withdrawal Thyroglobulin test. Probably will no longer scan anymore.

All that for a freaking 1 cm papillary thyroid cancer!

[mrsklamc]

Holy cow. I had no idea. I thought this was a one time thing, then I started reading and talking with people online and realized they were doing it yearly. I'm sure I will deal somehow but that seems overwhelming to me right now.

One of the things I can't stand about my endo is that he doesn't seem to want to answer questions beyond the step that I am on RIGHT NOW. I am an information person, I want it all out on the table. My surgeon understood that and provided me copies of my ultrasounds, as well as the interpretations of my CT scans and ultrasounds. This guy either won't answer or gives vague answers, or he tells me one thing and then something different (i.e. he told me to start cytomel right away after surgery and then on my one week he was like, oh, you don't have to take that unless you have problems. $60 down the drain, thanks so much.) He told me I would have to wait a year to start trying to conceive and lots of things I am reading online say 6 months. If he comes back and changes it to 6 months I will be TICKED because we made a pretty big financial decision based on a year. Argh. Sorry for the rant.

I'm confused though- was your follow up scan June of 96?

[Christine]

. Sorry for the rant.

I'm confused though- was your follow up scan June of 96?

Not sure what you are asking...It was just one of my yearly scans after my treatment.

Early in my treatment, I also found that they were telling me that this was all a "one shot" deal and that things would be taken care of quickly. As time went on, they started letting me know that they would not be leaving me alone. Of course, a lot of that had to do with the fact that I couldn't get a clean scan right away. Had a gotten a clean scan, though, I still would have scanned yearly for awhile.

My advice to you based on all that I've heard is that you do not want to conceive until you've had that clean scan.

Also the RAI does "work" and accumlate in your body for about 6 months. I think one year is a better time to wait. By then you will be scanning again. If you get a clean scan after one year, I think it would be safe to try to conceive, but I am pretty cautious about that kind of thing.

[mrsklamc]

Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!

[Christine]

Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!

Hang in there--you are *almost* there. Truly, these are the worst days. I also want to add that usually the next day after the RAI you may feel a little worse. That is totally normal (I was not expecting that). I like to know exactly what will happen so I don't flip out. I felt a little flu-like--it totally wears you out but then, really, that is the worst of it. It is all an improvement after that. I will be thinking of you and hoping it all goes well.

[luvmarypoppins]

Please keep me in your prayers guys... I only have a couple of days left (ablation sched. Weds) but I just am starting to feel like I can't take it anymore!

Hang in there Micayla. You can almost see the light at the end of the tunnel. Will pray for you. Did they tell you what the actual dosage will be? I didnt feel so good after either, not flu like which christine described but I felt crappy and thought like there were gremlins running around in my stomach and I did feel nauseous etc. You are doing great girl!!:cutie:

[mrsklamc]

Yesterday and today I have just felt SO SAD and out of it that it almost seems like nausea would be an improvement, just to feel something besides sad and tired. Tomorrow I just go for the tracer dose, I thought they might not do that any more but I guess where I'm going they do, and then a scan on Wednesday- then I am confused after that because it says the ablation is on Wednesday but I also thought someone somewhere along the line told me that it took a couple of days for the dosage to get here? I don't know.

Another thing the instructions say is "You may be asked to come back approx 4-7 days after treatment for another scan- the nuclear medicine dept. will give you more information."

So basically I am very uncertain what is going on but thank God my DH is going with me tomorrow and is much more 1)clear headed and 2) assertive than I am.

[Christine]

Yesterday and today I have just felt SO SAD and out of it that it almost seems like nausea would be an improvement, just to feel something besides sad and tired. Tomorrow I just go for the tracer dose, I thought they might not do that any more but I guess where I'm going they do, and then a scan on Wednesday- then I am confused after that because it says the ablation is on Wednesday but I also thought someone somewhere along the line told me that it took a couple of days for the dosage to get here? I don't know.

Another thing the instructions say is "You may be asked to come back approx 4-7 days after treatment for another scan- the nuclear medicine dept. will give you more information."

So basically I am very uncertain what is going on but thank God my DH is going with me tomorrow and is much more 1)clear headed and 2) assertive than I am.

I would be VERY surprised if they actually gave you a true tracer dose on Wednesday morning. They can give you something else (I think it is a dose of lithium or something) to see how fast you will excrete the RAI. Based on that test, they give more or less RAI. But, honestly, I would bet my last dollar that you are getting the ablative dose on Wednesday. The scan you may have to come back for 4-7 days later is what they call a "post ablative" scan. This is very common (see my schedule a few posts above). Any time they give you a large dose of RAI, they like to do a post-ablative scan. On very rare occasions they have been able to visualize distants mets with the high dose RAI--things that would not show up with a standard scan dose.

Don't fret about that at all--I was told by my technician that finding something like that is very rare and they hardly ever see it--only in people who have advanced disease.

[mrsklamc]

My TSH is 89. I got my tracer dose this morning, ablation is tomorrow- but then still LID and no meds for a week. I wasn't ready to hear that at all.

[Christine]

My TSH is 89. I got my tracer dose this morning, ablation is tomorrow- but then still LID and no meds for a week. I wasn't ready to hear that at all.

Good going. I am surprised that you got a tracer dose, though.

The reason the want you to keep up with the LID and no meds is that your thyroid gland absorbs and reabsorbs the iodine over a period of days. If you suddenly eat a bunch of iodized salt or you take meds that will make your thyroid less avid, you could interfere with the treatment.

[luvmarypoppins]

Micayla - I will say a prayer for you tomm. I am going to Disney, so you can see God is Good and you will get through this too!!

Christine - I am so confused by all of this, I had the 2 thyrogen shots, had the 200 rai, only stayed on the diet for 1 day in the hosp, after the 2 weeks was geiger countered all the time there. I had to drink tons of water they said to go home. My scan showed the remnant and the infection that was in my stomach which is now surgically removed. I guess I am just wondering if I didnt get as good a treatment etc? Like not being off the meds and having the diet longer etc.

[Christine]

Micayla - I will say a prayer for you tomm. I am going to Disney, so you can see God is Good and you will get through this too!!

Christine - I am so confused by all of this, I had the 2 thyrogen shots, had the 200 rai, only stayed on the diet for 1 day in the hosp, after the 2 weeks was geiger countered all the time there. I had to drink tons of water they said to go home. My scan showed the remnant and the infection that was in my stomach which is now surgically removed. I guess I am just wondering if I didnt get as good a treatment etc? Like not being off the meds and having the diet longer etc.


luvmarypoppins--You will find that that every doctor does something different. I too was allowed to resume my meds when I left the hospital. And when I was being treated, they weren't even doing the LID so there you go on that one!!! I didn't even do the LID until my 2000 scans and did not do the LID on any of my treatments--nor did most people treated before 1997 and most of us turned out fine.;)

I am a little surprised they gave Micayla a tracer dose. A "noted" thyroid oncologist totally objects to this as a tracer dose can "stun" your thyroid remnant prior to treatment. I will say that my surgeon gave me a tracer dose prior to my treatment but I thought it wasn't done anymore. They didn't know about "stunning" back then.

So you see, we all have some minor variations to our treatments and, for the most part, I believe all the doctors are doing what they believe is the best thing.

[Christine]

Just want to say to mrsklamc: Good luck and know that we are with you today as you go through your treatment!!!:wizard::grouphug::cheer2:

[mrsklamc]

Thanks! Thursday was the worst as promised but not too bad physically. I was PMS-ing right before treatment too and I think that was really exacerbating the hypo symptoms as I am feeling better today. I AM just so SICK of this LID at almost 3 weeks and even more frustrated that I don't know how sure they are that it helps.

They are releasing me Wed. At 11:15 AM from the diet and Heaven help anyone between me and whatever I crave most at that time!

[Christine]

Thanks! Thursday was the worst as promised but not too bad physically. I was PMS-ing right before treatment too and I think that was really exacerbating the hypo symptoms as I am feeling better today. I AM just so SICK of this LID at almost 3 weeks and even more frustrated that I don't know how sure they are that it helps.

They are releasing me Wed. At 11:15 AM from the diet and Heaven help anyone between me and whatever I crave most at that time!

Glad to hear things are going well for you. I know the LID is awful. FWIW, I do think it helps so just know that you have done the best for yourself and optimized your treatment. You will never look back and say "Wow, I wish I had done better or had done the LID." With cancer treatments you need to do all you can to make sure you get rid of it!!!

So what do you think you'll eat on Wednesday. Most people routinely go for pizza or Mexican food!

[mrsklamc]

Thanks Christine! For about all of last week I REALLY wanted a cheeseburger and a milkshake, but Friday I was watching standup on comedy central and they kept showing commercials for the cheesy gordita crunch at Taco Bell- I think that's in the lead- it's the cheese that's really making this hard. Well, that and a symptom I wasn't expecting from being hypo since I'm eating so mnay fruits and vegetables.

[Christine]

Well, that and a symptom I wasn't expecting from being hypo since I'm eating so mnay fruits and vegetables.

I think I know what one you're talking about. Not fun. Everything just slows down so much, it is really unavoidable.