Stopping carbimazole : My endo wants me to stop... - Thyroid UK

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Stopping carbimazole

Hammyfish1 profile image
7 Replies

My endo wants me to stop carbimazole. I am on 5 mg daily and going slightly hypo. TSH 2.5 and FT4 8.5 ( 12-22). Should I reduce to 2.5mg daily or just stop? Antibodies are present but minimal, he says this is now negative as most people have a few. He also said 2.5mg would do nothing. Any thoughts?

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Hammyfish1
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Lalatoot profile image
Lalatoot

You can just stop. This is the standard protocol for hyper. The idea is to see what happens. Some folks are fine but others go hyper again. I was stopped carbimazole 3 times over 5 years but kept going hyper again.

Once you've had your trial stoppages they will discuss long term treatment if you continue to go hyper.

PurpleNails profile image
PurpleNailsAdministrator

If the the 5mg dose is pushing you into hypothyroid levels yes - the dose should be stopped. If you were on a higher dose I be suggesting it be reduced.

I have a stable nodule and 2.5mg makes a difference to me. Or in my case the extra 2.5mg a day. On 5mg a day I edge towards hyper but 7.5 a day I’m in range.

If your thyroid levels were still high in range on a low dose there would be a case to remain on carbimazole.

Some doctors seem to rush patients off carbimazole to test remission within a year or when a high dose is still required / high thyroid levels are ongoing.

You’ve taken carbimazole for some time so it would seem appropriate to stop.

Hammyfish1 profile image
Hammyfish1 in reply to PurpleNails

Thanks PurpleNails, that makes sense to me.

twinkiegal profile image
twinkiegal

Everyone is different but 2.5mg a day keeps me from going back to hyper. I've tried to stop a couple times but if I do everything shoots up again. So I have to disagree about the 2.5 not doing anything...

twinkiegal profile image
twinkiegal

But I also still have a high level of antibodies so that could be the difference.

pennyannie profile image
pennyannie in reply to twinkiegal

If we are talking about Graves Disease antibodies these can wax and wane throughout one's life.

There is no cure for Graves, but trying to identify your own personal issues that may trigger your immune system to go on the attack will help keep you on an even keel.

Glad to read you have been given the option of staying on a low dose of AT medication.

pubmed.ncbi.nlm.nih.gov/338...

Jman86 profile image
Jman86

So Hammyfish did you stop? How are you doing now?

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