[BMSol]

#1018248

I’m in need of some expertise!! Which I consider my fellow indiviuals with Graves Disease. Anyone ever experience this???
So basically I’ve had Graves for 5 years. I had been in normal range for about 2 years while taking the Tapazole. My new Endo decided to take me off the 10 mg of Tapazole I was taking daily and ‘see what happens’. I switched to her because I wanted an endo with better bedside manner and that would listen to how I was feeling (which wasn’t too good) and her opinion was that I had been on Tapazole much too long and that we need to see if I’m in remission and if I’m not we were going to radiate my Thyroid. (her opinion) For the first 6 months, my labs came back ‘normal’ each time. I experienced various symptoms and never really knew what to make of them. My primary care told me it was probably stress, so he put me on Zoloft and Ambien to help me sleep. He also prescribed Klonopin for the days I was really "stressed". I tried to improve my diet and stopped drinking Diet pop. I used to run alot (5 miles-3 times/wk) and workout often. I had been feeling very tired and hadn’t been running much and my body just wasn’t feeling strong. Over the past year I have gained 16 pounds ” title=”Sad” />
My primary Dr. tested my labs on Aug 9th and my TSH was 3.59 -normal (his range for TSH is 0.35-5.5). So I had a checkup with my Endo and she wanted my labs ran before she saw me so I had them ran on September 23rd. She called and told me my TSH was 0.39 (her referance range is 0.4-4.2) and that I was hyperthyroid and to start taking the 10 mg of Tapazole and see her in 6 weeks. I had a conference for work and didn’t want to start on anything so I waited 2 weeks and then started it on Oct. 16th. I had an appointment with my primary care on Tuesday Oct. 26th and I was called today to be told that my TSH is 3.82 and that the nurse had never seen a TSH value move this rapidly in her entire nursing career. She didn’t know what to do and she was going to fax my labs to my endocrinologist and told me to call her this afternoon. Anyone have any advice or ever experience this rapid change?? Any thoughts would be great!! I don’t know if I should just radiate it or keep trying on the meds. I just really want to feel well (like everyone) get back to running and being myself. Hope everyone is feeling great.

June- TSH 2.05 Free T4-0.7
Aug-TSH 3.59 Free T4 1.05
Sept-TSH 0.39 Free T4 0.8
Started Tapazole 10/16
Oct-TSH 3.82 Free T4 (she only told my tsh over phone waiting for paperwork but she said normal)

Thanks,
B

[Kimberly]

#1063506

Hello –The pituitary gland is responsible for producing TSH. TSH in turn directs the thyroid gland to produce more hormone. When things are working properly, the amount of TSH produced by the pituitary depends on a “feedback loop” according to where our thyroid hormone levels (T3 and T4) are. If T3/T4 levels are *low*, you should see the TSH levels *increase* in order to prod the thyroid gland to make more hormone.

I haven’t personally experienced swings that extreme in TSH, so hopefully, someone else will be able to chime in here. But before making a final decision on a treatment option, you might ask your doc about testing pituitary function…just to make sure that’s not what’s causing the issue.

[Ellen_B]

#1063507

Will you be talking to the nurse of your primary care doctor about what to do about your thyroid treatment? I believe you said your nurse is going to talk to the endocrinologist and then report back to you. Would it not be better if you could speak directly to your endocrinologist, hear her interpretation and ask more questions? Find out from her what she thinks about your fluctuating TSH numbers. She may also have questions to ask you.
You could ask her what her experience has been with her patients on antithyroid drugs. Being an endocrinologist she should have treated many thyroid patients. The treatment decisions for thyroid are not always simple and you need to get advice from the best possible source.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville NY 14221
Toll-free — (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org

[BMSol]

#1063508

My nurse at my primary care office faxed their lab results to my Endocrinologist. The problem is…each lab is using a different reference range. And both labs are using a different reference range than what I have read is the most recent range according to the American Association of Clinical Endocrinologist. In 2003, they changed TSH range to 0.3 to 3.0. My primary care’s reference range for TSH is 0.35-5.5 and my Endo’s referenance range is 0.4-4.20. The nurse from my Endocrinolgost office just called me and told me that my labs where in normal range and that it was nothing to be concerned with. I said I just started that medicine 2 weeks ago and my TSH last month was 0.39 and now it is 3.82. And depending on which reference range you are looking at I could be ‘normal’ or hypothyroid now. I tried to ask the nurse this and she said she didn’t know how each labs deteremine’s what reference range they use. I said well that’s very important since if you use the 2003 changed range I would have been ‘normal’ when my TSH was 0.39 and shouldn’t have started the Tapazole. Now, according to this new range, I am hypothyroid. I felt best when I had a lower TSH and I now I feel very tired again. They did not mention anything about testing the pituitary and just told me the rapid change in TSH was directly due to the medicine and not to be concerned. I’m very confused. 2 labs, 2 different references ranges, new 2003 reference range-each one changing the outcome of my treatment. Which range do I use? I am very frustrated. I feel all over the place. I don’t trust how I’m feeling anymore because it seems that how I’m feeling contradicts what my labs are. And this new Endo is so busy and doesn’t seem concerned about anything but the numbers. I left one Endo because of that exact reason. I just want my energy back… I just want my self back. I research and try to figure out what’s best for me but I am at a loss right now. I broke down this morning and started crying because a pair of jeans I was wearing just 2 weeks ago where very tight when I put them on. I know that’s not the end of the world but for a person who’s been athletic and active there whole life and everything seems to be spiraling out of control and i can’t seem to get a straight answer from anyone-it’s just wearing me down. Do I trust how I feel or the labs? Do I trust my Endo or my primary care? My primary care has been much more supportive and understanding then my Endo has ever been. I’ve only seen her once during this whole ‘lets see if I’m in remission escapade because she didn’t feel that any appointments where necessary. All the while my labs are bouncing all around…and I’m feeling it. At least I think I am… Help!

[BMSol]

#1063509

Well my Endo just called me back. She said that there is no reason to test the pituitary gland and that the jump from 0.39 to 3.82 is not a cause for concern and the nurse from my Primary care office had no right to tell me that she had never seen a TSH move so quickly. She said what do I want to do? I said what do you think I should do… I feel better when I am on the lower end of the TSH range. I asked her if her other patients complained of experiencing symptoms when there levels are ‘normal’ and she said her patients felt fine when they are within normal limits. I told her I have ready studies and blogs from Thyroid patients who are Euthyoid and that they still felt symptoms. She said Thyroid patients tend to blame their symptoms or everything they are feeling on their Thyroid when if it is normal range, the thyroid is not the issue so it must be something else. She said she is not familiar with any studies that say otherwise. I asked her about the lab range and the latest change from the American Association of Clinical Endocrinologist and she said this change is not been accepted and that it has been controversial for years. I also told her about my weight gain… which I understand I have been inactive but it’s because I have been so fatigued. She told me I cannot blame my thyroid. I wasn’t trying to blame my thyroid, but was just looking for support and her professional opinion. She told me she had to go because she had to see patients. The whole conversation felt like someone was trying to prove a point to me rather than give me health care and treatment. I’m very down about this. I hear conflicting information from every angle. She said I have 2 options, we could cut back to a lower dose of methiamazole or I could stop taking it. She made no effort to tell me that people will feel different when their TSH is at different points on the reference range. According to her, if you are normal… you should feel fine. Now I’m back where I started… feeling crazy and like a hypochondriac. I guess I’m going to stop taking my Tapazole because I felt better when my TSH was lower. Any words of encouragement or advice would be greatly appreciated.

Thanks in Advance
-B

[Bobbi]

#1063510

When you have Graves you are in things for the long haul with a doctor. If the doctor cannot trust you to cooperate with their instructions you are in trouble because they will never, ever listen to your issues without skepticism. You need your doctor to trust you to be compliant. So, my advice is whatever you do, do NOT tinker on your own with your meds.

As to the variability of test results numbers. Different labs use different techniques and different testing compounds etc. in their testing. This is why each lab issues its own range of normal, which will differ from another lab’s range somewhat. It has nothing to do — as far as I know — with being "up to date." It makes sense not to have tests done at a variety of labs if it is not necessary, because comparing one lab’s numbers with another lab’s numbers can confuse. As it has done. So, another piece of advice: whenever possible, stick to the lab used by your endocrinologist.

I view with skepticism any claims online from patients that they can tell where their levels are optimal. Why? Because I’ve been a Graves patient for 14 years now, and have had lots and lots and lots of blood tests done. I have gone in convinced that I am hypo, and had a TSH of 2.0. I have gone in convinced that I am hyper, and had a TSH of 2.0. I have gone in and felt fine, and had the same TSH. I have also gone in and felt fine with other numbers within the normal range. How we feel has little of nothing to do with thyroid IF the thyroid levels are within the normal range. Maybe at the very fringes of normal you can have symptoms. But if your rear end is dragging, and your levels are mid-normal, then there is something else going on. Maybe your body hasn’t had time to heal from the previous thyroid imbalance. It takes time AT normal levels of thyroid — months of time — for our bodies to heal. Maybe your muscles need to be strengthened — we lose muscle mass and strength while hyper. Feeling tired may keep you from exercising, but it should not, because then it becomes a vicious spiral downward. The less we use our muscles, the weaker they become. We NEED to work our muscles. Baby steps at first, but little by little we need to rebuild strength.

It isn’t easy. I don’t mean to imply that it is. I had to drag myself out for brief walks. And I found that I felt a wee bit better when I did that. I had to pump iron — which started out as small paperback books, because I had little strrength. But gradually, I regained strength and stamina.

Wishing you better days and soon.

[Ellen_B]

#1063511

I am glad you were able to talk directly with your endocrinologist. I do wished you found it easier to talk to her –but at least you know exactly want she wants you to do.
It is true that that there isn’t one set of numbers for the upper and lower range of normal for the TSH for every lab. The reason is the TSH is measured by immunoassays. Unlike chemical reactions that precisely measure the amount of glucose or sodium, immunoassays are very dependent upon the antibody used to measure TSH. These antibodies are produced by many different laboratories. Some laboratories use antibodies which they produce themselves, while most use commercially available antibodies sold in “kits.” These commercial kits because they are using different antibodies as well as different immunoassay techniques, may have slightly different normal ranges.
The kits may also give slightly different results depending upon the impurities in the local water supply, the temperature of the laboratory, and similar factors. On top of that most laboratories will test the kits on a large group of normal patients. It makes a difference what group they chose. If they exclude subjects in the group that have anti-thyroid peroxidase antibodies then the upper limit of normal will be lower.
Thus according to a thyroid specialist (Dr.Douglas Ross at MGH Boston) the upper limit of normal for theTSH may vary from 3.5 to 6.0 mU/L depending how a laboratory chooses to define “normal”. The lower limit of normal in most laboratories is 0.35-0.6 mU/L.
I hope these too many words shed a little light on why the TSH is not standardized. With all the hard work and large amount of effort that I can see you are putting out to find out the answers to some difficult quesitions you deserve a reward–that is to get better VERY soon.

Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/

[optimist]

#1063512

The TSH usually has a 6 week lag time, so it sometimes should be noteworthy if it flucuates so quickly. It could be as simple as changing doses in between labs. I had a similar issue, and went hypo in 3 weeks on a low dose ATD. This is not ”classic’ for most graves people. I also have the hashi(hashitoxicosis) antibodies that i believe played a part too.

When was the last time your TPO was checked? Also, I’d also have them run an anti-thyroglubin AB test just to see if that could be part of the problem. My last TSH was 3, and I feel/felt achey all over, classic hypo symptoms. That’s the highest I’ve ever seen it. My FT4 is hypo for my GP labs, but not my endo’s ref range, so he won’t treat. Most will tell you to try and keep it under 2 b/c the majority of people feel best when their TSH is 2 and under.

[Author]

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