The THYROID Thread

[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 - 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!

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 - 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!

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?

 

[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!

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.

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!

 

[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. 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. 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. 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. 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! 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.