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#1 May 19, 2021 12:33:39

conky
Registered: 2021-05-16
Posts: 1
Profile  

METHIMAZOLE long term??

Hi all,

I've spent the last week reading so many incredibly helpful posts on this site. Thank you all for your contributions…and Kimberly, you are a true angel.

Anyway, I'm a 65 year old woman who was diagnosed 18 months ago with Graves Disease. I've been on 2.5 mg of methimazole 6 days a week for the full 18 months. It's worked great as I've had no side effects from either the methimazole or the Graves (aside from slight TED) and I honestly feel perfectly fine (aside from looking sickly thin from the 20 pounds i lost).

My endo, who is with an excellent hospital in NYC (NYU Langone) and has been extremely well reviewed online is recommending RAI or TT surgery. He said that after 18 months of methimazole, there is almost no chance for remission. Is this true?

I recently switched to him as my old endo was a bit far and I wanted someone more convenient. She, however, planned on keeping me on methimazole long term. She said I will remain on 2.5 mg until my TSI antibodies go down, which could be 2, 3 even 4 years. (my latest TSI is 552. It was 596 in September 2019 - normal range is <140).

I'm so confused. I am concerned with RAI as my mother had breast cancer and, of course would like to avoid surgery if possible.

Has anyone gone into remission after being on metimazole long term?

Also, can you possibly direct me to links (or a good ‘search term’ that i can use) discussing long term metimazole use and remission?

Thanks.

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#2 May 25, 2021 08:23:47

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4240
Profile  

METHIMAZOLE long term??

Hello and welcome (and thanks for the kind words)! A couple of resources:

* You can check out the very first “sticky” post at the very top of the forum for some personal experiences: https://gdatf.org/forum/topic/44273/

* The GDATF just did a webinar last February on long-term use of antithyroid medications: https://www.youtube.com/watch?v=WJjSzjFyNU4&t=78s

Even if remission isn't in the cards, some patients do well taking antithyroid drugs over a period of years - *if* their thyroid levels can be well controlled on a lower dose *and* if they are not experiencing side effects. Ultimately, it's up to you and your doctor to weigh the risks and benefits of all three treatment options (meds, surgery, RAI).

Take care!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 June 4, 2021 11:47:13

terppsi
From: Portugal
Registered: 2013-12-04
Posts: 23
Profile  

METHIMAZOLE long term??

Hi Conky,

I have been on methimazole long term. I was diagnosed in 2013 and in 2019 my trabs was finally negative though I still had anti thyroid antibodies.
So my doctor was weaning off the methimazole. Last year I started to forget taking the pills and since I was feeling alright I just went off them.
I just had bloodwork done 2 days ago and that included the Trabs and the antibody count so let's see what comes up.
My endo said that sometimes you can go hypo after a long period of treatment.

Good Luck!

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