[Carito71]

#1060445

Hello everyone. I haven’t really been here in a few months. I wanted to share with you my latest since you helped me out so much when Graves madness began for me 2 years ago.

I went to my Dr’s appt last week with labs and everything was normal (within normal range), my TSI in March was <1 (normal is <= 1.3), and I've been feeling well for a while. In reality my TSH, FT3, and FT4 have been normal for a while now but my TSI was still elevated until March when he tested me again (you can see my journey all the way at the bottom). My Methimazole dose was 1.25 mg/day from March to June. So the Dr. said that he would like me to come off the Methimazole. Since my TSI is below the normal range (not by much though), I went for it. So it all sounds like good news. Am I really in remission though? I’m not sure. How can I be sure? Anyway, it’s been a week since my last dose and I’ve been feeling well. That is, up to yesterday … today I’m feeling not so good. My stomach is a little bit weak. Yesterday I felt like my heart rate was elevated so I took my pulse and it was in the 80s. Not bad but it was bothering me. I could feel it. Anyway, I’m scared that I’m going to feel hyper again. My next labs will be in one month without an appointment and in 3 months with an appointment. Kimberly, can you remind me of your experience, please. If I remember correctly, you have been on Methimazole for a while at a very low dose. Is this because you achieved remission and then had to get back on it? My TSI was <1 in March and I'm wondering if we should have waited until it was 0 in order to take me off the Rx. The literature I've read here doesn't say. I know 1.25mg/day is low, but in my mind I wonder if it is it low enough and I'm wondering if we should have lowered the dose some more. If I may ask, how much Methimazole do you take? I know you take a very low dose. How low is recommended in order to wean a patient from Methimazole?

Anyway, thank you for reading me. Thank you for your help.

Carol

[Kimberly]

#1182664

Hello – I think that for most patients, the “weaning” process is mostly trial-and-error based on levels and symptoms. I haven’t seen any specific medical guidance on this.

I am on 1.25 mg twice per week. This has been reduced verrrrrrry slowly over the last couple of years. I have never been completely off the meds, although my TSI has never dropped below 300.

In terms of antibody testing, Dr. Douglas Ross from Mass General Hospital provided this info for one of our old newsletters:

There is no normal range for thyroid autoantibodies. Normal people do not have any autoantibodies. Measuring antibodies is much more difficult than other measurements such as cholesterol, glucose, or thyroid hormone levels. Many of the tests used to measure these antibodies will include a range of
low values that are of uncertain significance, and likely represent “noise” in the assay. In other words, the result needs to reach a certain threshold before there is confidence that the result is a true positive test. In some laboratories, values below that threshold may be called “normal.”

You know your body and your symptoms. If your heart rate continues to increase, definitely check with your doc’s office about getting a new set of labs.

[Carito71]

#1182665

Thank you Kimberly.

You are on a very low dose. You are on about 0.4 mg a day. So, if I read it correctly, one can deduce that, according to Dr. Ross, my < 1.0 TSI might even be "noise" and that people without Graves might have a number similar to mine, even though theirs is probably really zero (if using the same lab as mine, who gives a normal range). I know that looking at the autoimmune #s before discontinuing the Rx is important so I asked my Dr. to look at my TSI. He doesn’t care about TSIs. His opinion is based on response to the Rx and TSH, FT3 and FT4 but I was worried that if my TSIs were still elevated that I would get hyper again. I wonder if I should have asked him to look at another autoimmune #. What do you think? Is there anything in the literature about that? I think somewhere it said to look at TPOab? Not sure. I hope looking at the TSI was sufficient. Does your Dr look at other #s other than TSI, TSH, FT3 and FT4? (I’m not referring to liver, CBC, etc but immune and thyroid related). 300 TSI is maybe 3. something or even 4. with my scale … I think. I hope your TSIs start to come down for you. You are on a very low dose though and the TSIs are not bothering you. I find it interesting. Also, I read somewhere that Graves only tends to last about 4 years? Is that true? Or did I misread it. I read it a while back and I don’t think it is true. So many people here have had it active for longer than that. Thank you for your help Kimberly. Carol

[Kimberly]

#1182666

Hello – Yes, that is also my interpretation of Dr. Ross’ comments. The upper threshold is set so that it will correctly diagnose as many actual cases of Graves’ as possible, while giving the fewest number of false diagnoses. So there is some gray area right around the actual cutoff.

TSI and TRAb are the two antibody tests that are specific to Graves’ disease. The TSI test is specific to the antibodies that cause *stimulation* of the thyroid in Graves’ disease, leading to hyperthyroidism. The TRAb test picks up both stimulating and blocking antibodies in Graves’ disease. (Blocking antibodies *can* sometimes cause hypOthyroidism in Graves’ patients). TPOab is a “marker” for autoimmune thyroid disease. They are very common in Hashimoto’s Thyroiditis, but a certain percentage of Graves’ patients (even those who do not have HT) test positive for them.

As for how long the thyroid issues will last, that is very individual. Some might go into remission after a few months on ATD therapy, while others end up taking meds for years. And once the thyroid issues are treated, some might not experience complications from Graves’ ever again, while others down the road could see a relapse of hyperthyroidism, could develop eye issues, or could pass on antibodies to a fetus during pregnancy.

[Raspberry]

#1182667

Hi Carito, I surely hope you are in remission. I was heading toward remission clearly at one point – with each reduction of my methimazole dose my test values didn’t jump up but then a big bang of stress put an end to that. My TSI values haven’t correlated as closely as I expected to my lab responses to the dosage changes so I’m not sure what to think really at this point. I think as long as you go slow and steady with the reductions and work closely with your doctor on frequent labs you won’t get into too much trouble either way!

[Carito71]

#1182668

Kimberly, I have never had a TRAb done. When they do the TRAb does it specify how much stimulating or blocking one has? Or do they just give you one number. If they don’t specify it is kind of hard to know. Is the stimulating the same as the TSI? I did have the TPOab done and it was up by a lot. That was in 2011 before I was diagnosed and 2012 right when I was diagnosed. Haven’t had that tested since 2012. I have never been told I have Hashimoto’s but who knows.

Do you know if one can experience withdrawal symptoms from stopping the Methimazole? I sure have been feeling off these last few days and I was feeling great before stopping the Methimazole. I’m a little worried thinking it might be related to me discontinuing the Rx.

Rasberry, thank you. I hope so too. How low did your TSIs get when you were on the road to remission? How low did you get on the Rx dose? I’m hoping what I’m feeling right now is not related to me stopping the Rx. Well, maybe if it is the Rx I can get back on it.

Carol

[Kimberly]

#1182669

Hello – Unfortunately, the TRAb test does not separate out stimulating and blocking antibodies (at least not at the lab that I use). And the measurement for TSI is on a completely different scale from the one for TRAb, so it’s really an apples to oranges comparison. You could make some general interpretations from having both, though; for example, if TSI was very low, but TRAb was very high, you could infer that the TRAb are primarily blocking antibodies.

I think we’ve had at least one other poster who said they didn’t quite feel right when coming off of methimazole, although I don’t recall who that was. To my knowledge, methimazole is not traditionally a med that is associated with with withdrawal or rebound symptoms – although certainly everyone coming off of methimazole should be alert for traditional symptoms of returning hyperthyroidism.

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