[trlrunner]

#1058773

Hi! Just a quick question concerning treatment with methimazole: Is it common to have constant "ups and downs" while on methimazole? I have been on varying dosages of methimazole for 9 months and my blood levels have consistently fluctuated – as well as feeling good and not so good. I’ve not had an extended period of time with stable levels (like a few months). I feel like my body is a constant state of flux. I am either going too high or too low (my TSH has finally risen but now is too high and I am hypo and my free T3 and T4 are too low = hypo). But now, after lowering my dose down to almost nothing, I am heading hyper again. I have had weeks where I thought I was achieving "normal" status – I felt great – but then it would start moving one way or the other, depending. I want to keep the "normal"!!! ” title=”Very Happy” /> I seemingly have a very attentive endo and have been in for bloodwork every 6 weeks since February. Her goal is to get my TSH at the low normal range and my free T3 and 4 in high normal range and see how I feel. Anyway, just was wondering if the constant fluctuation is normal with the med.

If the continuous fluctuation tends to be normal with the methimazole, I may have to consider RAI or surgery. I am so nervous about choosing to become hypo for the rest of my life after one of those procedures (read: gain weight. I currently am back at what was my normal weight for many years before Graves. It will be hard to have to struggle with the potential weight gain aspect when weight has never been an issue.).

FYI – Oct 2 was during one of the periods where I was feeling good and normal and I ran my first trail race in a year (spur of the moment b/c I was feeling like my old self) – a half marathon. I placed 5th woman out of 350 women. I was stoked! So I know it is still in me – I just want to be able to keep that good feeling and have some stability where I can plan for future races. The ‘bottom’ fell out soon after that race and I am trying to get leveled back out. Michaela included a photo of my husband and I, from that race, in her presentation at the recent conference in Boston. ” title=”Very Happy” />

Thanks for any feedback!

[Bobbi]

#1169894

Hi, trirunner. Congrats on the fifth place finish. That is awesome!

I’m curious about what your doctor thinks about the cause of the constant fluctuations on methimazole. It is not a good place to be for nine months. Usually, typically, people get onto some steady dose of methimazole much quicker. Occasional tweaks are to be expected because the disease is autoimmune. Antibody levels do rise and fall for no well-understood reason, but every few weeks is not typical.

I want to address your issue of "choosing to be hypo" for the rest of your life, and suggest a different way of looking at it. I had RAI in 1996, and have been healthy (thyroid-wise) ever since. I am not ever hypo. Well, that’s a bit much, I have rarely, but occasionally, in these past 15 years, needed to raise the dose of my replacement hormone to bring it either back into normal, or tweak it into a slightly higher state of normal. But as for feeling hypo, having nasty hypo symptoms, being really hypo? Never. Replacement hormone IS thyroid hormone. So, as long as we are on the proper dose of it, we are not hypothyroid. Hypo is a technical term referring to a lack of thyroid hormone. Replacement hormone is chemically identical to T4, and works exactly like T4 produced in the body.

The goal with both surgery and RAI is usually to get rid of a significant portion of the thyroid, so much that those fluctuations in antibody levels — the things that are making you move between hypo and hyper — can no longer plague our lives.

Uncontrollable weight gain is NOT a given with thyroid removal. We do regain some weight if we have lost muscle — the muscle comes back. But you’ve already experienced some of that with the antithyroid med. Once we get to stabilized normal levels of thyroid hormone, our weight issues level revert to normal. Given that you are an athlete, and exercise regularly (something which a lot of folks do not do) you should not expect a problem. So do not use the fear of weight gain as a rationale for eliminating the possibility of RAI or surgery.

[Kimberly]

#1169895

Hello – Dosing with methimazole is part art, part science. If the standard dosing (5 mg, 10 mg, etc.) is causing wild swings, another option is to split doses or alternate doses on different days. I’ve been on Anti-Thyroid Drugs for over 4 years, and my body is super sensitive to changes in dosing — I’m currently taking one dose 6 days a week and a slightly different dose 1 day per week.

Another option that was suggested at our Boston conference is to maintain a steady dose of Anti-Thyroid Drugs, and then add a small amount of replacement hormone to keep you out of hypO territory. The doctor who did this presentation felt that it was easier to keep patients stable by keeping the ATD dose consistent and adjusting the replacement hormone as needed.

By the way – glad to hear that you were represented at our conference. Michaela did a great job with her presentation!

Take care!

[trlrunner]

#1169896

Hi Bobbi and Kimberly!

Thank you, both, for your thoughtful replies. My doc has commented that my body responds very easily and quickly to the methimazole. I took this to be a positive. I just have heard of the "block and replace" therapy, as of yesterday, and will ask my doc to explain that method to me when she calls.

Doc hasn’t been able to give me a good explanation as to the reason my levels have fluctuated so much on the methimazole. She just has said that everyone responds differently and that there is no ‘normal’ or ‘cookie cutter’ pattern to predicting each person’s response. I am due for blood results to come back today or tomorrow. Because I went so hypo according to my results from 3 weeks ago, she had me go completely off the methimazole for 2 weeks and then have my blood tested again – those are the results I am waiting for today or tomorrow. She said we would evaluate those results along with how I am feeling (I think going hyper again – night sweats, slight leg tremors, and increased heart rate, and very sluggish and lethargic – ha, ha, ha – I was feeling sluggish and lethargic when I was going hypo, too – it’s a no-win situation!). ” title=”Very Happy” />

Thank you for clarifying and helping to ease my worry about losing control of my weight if I end up having surgery or the RAI. That is certainly a very worrisome aspect, especially for an athlete. Also worrisome, are the potential risks posed with each procedure. So much to consider. I have had a few eye issues – mostly in the form of dry/grittiness, sensitivity to light, and some pain in and around my eyes – doc hasn’t been clear whether or not my eye symptoms would be a concern with RAI. I guess we’ll cross that bridge when we get there. Despite the ups and downs, I am incredibly thankful for the many blessings I have in my life. This is a speed bump in life and we’ll get over it eventually. Dealing with Graves has made me more aware and empathetic to others who are facing life altering challenges.

Thank you again for your thoughtfulness!

[Author]

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