RAI or continue on Carbimazole? - Graves Disease Su...

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RAI or continue on Carbimazole?

Red_leaves profile image
5 Replies

Does anyone know the long term risks of staying on Carbimazole? I have been told that the Radioiodine treatment is the gold standard of treatment, but the articles online talk about increased risks of cancers. I am on 5mg Carbimazole and have been for 5 and a half years, with 3 monthly blood tests. Twice tried without but relapsed both times, so am back on it. I don't mind taking a tablet a day for the rest of my life, but can't really understand why RAI is recommended over doing this. Is it because there isn't any long term data about Carbimazole? I'm confused as to what to do for the best.

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Red_leaves
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PurpleNails profile image
PurpleNails

welcome

I’ll be back later to add a fuller reply, but in mean time you could post on main thyroid forum which is a busy forum which lots more members.

duster profile image
duster

hi Red leaves, Sorry only just read your post. I’ve been on carbimazole for 13 1/2 years. I’ve had to change dose after covid as that seems to affect me but now down to 5mg twice a week again. I’ve had no problems being on it long term.

pennyannie profile image
pennyannie in reply toduster

Hey there Duster -

Yes that makes sense as Covid would have affected your immune system response ;

This question has actually been answered much more thoroughly over on the Thyroid Uk arm of the forum - where there were over 22 replies.

If you press Red Leave's icon - alongside her name - you will see the other post and fuller conversations which maybe of interest to you.

Glad you decided to stay on the AT drug - trust you are keeping well :

Red_leaves profile image
Red_leaves in reply toduster

Thank you Duster. That’s really helpful to know. I’ve decided at the moment to stay on the carbimazole. It’s really good to know that you’ve had no problems on it long term. Thanks

Blodders9 profile image
Blodders9

Hello Red Leaves, l was diagnosed with an enlarged thyroid in January and having seen the Endocrinologist twice now. I currently take 10mg carbimazole a day which could be reduced to 5mg after my next blood test.At this moment I feel that I am being somewhat pushed into taking RAI , but I haven’t got any real explanation from the consultant on why this is so called the best treatment,and unable to find much information regarding RAI. As far as I can see it probably means taking thyroxine later for an under active thyroid anyway .I have decided against it for the present ,

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