Long-term methimazole therapy improves Graves d... - Thyroid UK

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Long-term methimazole therapy improves Graves disease remission rate

ling profile image
ling
8 Replies

mdedge.com/clinicianreviews...

Wow, time could mean hope for those with Graves on long term carbimazole therapy!

I can partially attest to this. After being on carbimazole therapy for coming 4.5 years, my TraB level has come down from very high to within range.

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ling
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Greekchick profile image
Greekchick

Hi ling,

This is great news for people who do not have severe side effects or become resistant. My endo was willing to let me stay on it indefinitely as long as I had no side effects, but I became resistant to it, sadly. Others may not, so I hope it works for some!

ling profile image
ling in reply toGreekchick

True.

The UK thyroid website is already listing this as a treatment option! I was surprised to see that. So advanced! Over here, the system is still pushing everyone who relapses to RAI?!

aanxious profile image
aanxious in reply toGreekchick

Sadly I was on methimazole treatment for about 6 weeks (since Jan 2018) and I got severe cramps and muscle pain that sent me to bed for two weeks.

The post is good news but unfortunately not for everyone :(

Greekchick profile image
Greekchick in reply toaanxious

You are right - I read posts here of individuals who have a very bad experience with Tapazole - I was lucky for while it lasted - as I have said elsewhere on the forum , no good solutions for Graves yet . That’s why so many of us end up with TTs or RAI - but RAI was never an option I was willing to entertain even though it was suggested. All the best to you.

ling profile image
ling in reply toaanxious

What was your treatment course after methimazole?

aanxious profile image
aanxious in reply toling

My hyperthyroidism is pretty mild actually, so I am in "observation" and with a small dosage of propanolol; but the probability of been treated with radioactive iodine in a near future is high.

ling profile image
ling in reply toaanxious

Have you tried PTU?

Sophitje profile image
Sophitje

I was on carbi for 3 years then remission for 10 years. When I relapsed in January this year and I went back on the carbimazole treatment, I got agranulocytosis. I opted for total thyroidectomy, was operated in March and now on 75 mcg levothyroxine. I'm feeling great and in a way I'm glad I don't have to go through the block and replace treatment that I had 10 years ago as it required a lot of adjustments and several phases of feeling unwell. I'm not advocating thyroidectomy but in some instances, it can be the only option and help the return to full health (no thyroid can be better than a sick thyroid).

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