The THYROID Thread

[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!

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!

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!

OMG, I am so sorry. I didn't mean you did anything wrong!!!!! 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!!!

 

[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!!!

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!!!

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 )

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?"

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.