[green123]

#1060739

Hi everyone,

The doctor can’t seem to find the right dosing for methimazole. I have been on it for two years. There has been the following:

-5mg x 3 daily (which then makes me hypo)
-5mg x 2 daily (hyper)
-5mg x 3 daily on odd days of month–5mg x 2 daily (even days of the month).

The doctor is now recommending either radiactive iodine therapy or removal. Because of my eye condition, she does not recommend the iodine.

Aside from the above treatment options, have you seen anything else? We had tried block and replace for 2 weeks, but that is when I saw my eyes protrude a great deal/onset of the eye problems, so I am associating my eye problems with block and replace and I am concerned that will aggravate my eyes if we do block and replace again.

Any thoughts? Please and thank you.

[Ellen_B]

#1184434

Thank you for sharing your thoughts. I have some thoughts too.
Why would adding thyroxine to your methimazole cause your eyes to bulge? Is there some interaction between methimazole and the thyroxine that we do not know about or understand?I would not think so?
Why would the thyroxine cause your eyes to bulge? I have heard that becoming hypo for a certain length of time when on too high a dose of methimazole has been found to result in a worsening of the eye condition. Moreover, I do know that too much thyroid hormone as Graves’ patients have does cause the eye lid retraction—producing the wide open stare. Would that condition increase the condition of the bulging eyes? Does your ophthalmologist have anything to say about what is going on with your eyes?

Not doing well on the methimazole and not being able to do the RAI leaves you with the last choice of surgery. Continuing with the methimazole treatment (not an option for you) means more discomfort.
I have spoken to quite a few individuals experiencing your same regulation problems. You are not alone. Could someone here on forum in a similar situation tell us what she or he did to deal with such a problem?
Please keep us informed in general on how you are progressing. We are eager to hear—as I know you are—some good news—that is your improvement.

[Liz1967]

#1184435

My eye disease began very shortly after starting methimazole and progressed rapidly to optic neuropathy, proptosis, double vision, lid retraction, etc in six months. I then had thyroidectomy, steroids and orbital radiation and the eye disease slightly regressed and burned out six to eight months after thyroid removal. Antibodies usually decrease within a year of thyroidectomy, methimazole does not have that effect. The eye disease progresses at its own rate. If you go the thyroidectomy route, be sure to find a surgeon that does a lot of them, like three a week.

[Kimberly]

#1184436

Hello – How did you do on the alternating days? Could you try splitting pills so that you were getting the exact same dose every day? Splitting a 5 mg tablet in two is easy with an inexpensive pill splitter. You can also split a 5 mg tab into fourths, although that is a little trickier!

Being hyper or hypo can increase the risk of eye issues, so it’s possible that you didn’t have the right ratio of “block” vs. “replace”.

[green123]

#1184437

Thanks Kimberly.

I was still hyper with the alternating days. The doctor was surprised that the tiny tweak affected my so greatly since I was hypo with 15mg. I may bring up the pill cutting technique in the next visit.

For the block and replace, how is the correct dosage found? Is it also trial and error? This concerns me because this may affect the eyes.

Thanks again!

[Kimberly]

#1184438

Hello – I was very sensitive to changes in dose with methimazole; there were times that I was on one dose 2 days a week and a different dose 5 days a week!

The Block & Replace involves trial and error as well, although it’s usually the dose of replacement hormone that is getting tweaked, rather than the methimazole.

I’ve not seen any research that ties eye issues to B&R. However, keep in mind that with the higher doses of methimazole involved in B&R, you increase the risk of severe side effects.

[terppsi]

#1184439

Hi,
It was also very hard to find my sweet sopt, I would go hypo on 5 mg a day, then we decreased it to 2.5 mg a day and I was hyper. So now I am taking 2.5 mg from monday to sfriday and resting on weekeds.
I am also very sensitive to dose change, just increasing 5 mg per week would cause a dramatic change on my thyroid levels.
but finally, after almost 3 years, I have been stable for the last six months or so, my goiter is smaller and not as hard as it used to be.
I was hesitant on having a thiroidectomy because i was afraid of losing my singing voice but I think I would have done it otherwise (Iodine was not an option for me, I had almost all the contra indications). From others’experiences in this forum, having no thyroid seems to be much more manageable.

[snelsen]

#1184440

Green, of course what you think about thyroidectomy and your voice are very important. Followed by the fact that if you don’t do the surgery, you don
‘t have the concern. I’d like to share with you that I sing in two choral groups, and there are at least 20 women I know personally who had thyroidectomies, and there was no significant change in anything. Myself being one of them.

We have noticed, however, unrelated to Graves, that as we get older, our voices are lower, and it’s hard to have women who are still comfortable with the soprano range!

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