Am new here: Interested in anyone else's history... - Thyroid UK

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Am new here

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Interested in anyone else's history of taking carbimazole for overactive thyroid. I was initially prescribed four mgs, have now been on two mgs for some years, taken at night, as felt nauseous after taking them in the morning, initially.

So far, my blood results re thyroid seem to be ok, but am I right in thinking I will have to take this medication for life?

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10 Replies
Pastille profile image
Pastille

Hi and welcome Hidden :) If you put carbimazole into the search box at the top you will get many users experiences. I'm sure others will reply too though

in reply toPastille

Don't know who or what has to be put in here! New to this!!!!

Thanks anyway!

Hi to you Pastille, thanks for such a quick reply! Reading through some of the other posts am amazed, though prob naive! that some folk are on 40mg plus, and seem to self medicate with this drug, forgive me if that's incorrect. I would not be able to get any more of this drug if I wanted to! Take care, I live in UK, still trying to navigate round this site xxx

Pastille profile image
Pastille in reply to

Sorry I didn't explain very well about the search box did I :/ I don't know much about Carbimazole I am Levothyroxine myself but you will get good help and advice here. Pleased to meet you and good luck x

bantam12 profile image
bantam12

Debfigroll, the usual treatment with Carbimazole which is for overactive thyroid is too take the dose that normalises thyroid levels for around 18 months then stop medication to see if you go into remission, treatment should be overseen by a Consultant. Many people relapse so treatment is started again for another period of time. If remission is not achieved the options are surgery, RAI or some choose to stay on Carbimazole though not usually with Consultants blessings. I'm not aware of anyone on the forum self medicating with Carbimazole, I think you have read of people self medicating with various meds for treating underactive thyroid, not overactive as you have.

in reply tobantam12

Many thanks for that bantam 12. As far as remember, I have never been given the option to stop this medication, so what you say is interesting, and after an initial visit with Endocrinologist, the GPs at my surgery have overseen my treatment for this and other health problems. Many thanks anyway 😊 From Debfigroll (UK)

Silver_Fairy profile image
Silver_Fairy in reply tobantam12

I self medicated, to a point.

When B&R failed (which is usually the procedure which goes over an 18mth course) I asked my Endo if I could titrate Carbimazole. Started at 20mg and with regular blood tests (roughly 12 - 16weeks) dropped my dose very slowly.

I never actually took her advice on how much to drop down to, I listened to my body, took note of symptoms and chose myself what dose to take. She wasn't impressed but went along with it.

When I had dropped to a very low dose (2.5mg every other day) she told me it probably was doing nothing at that rate so I stopped. I have now been in remission for 18mths.

bantam12 profile image
bantam12 in reply toSilver_Fairy

Not really self medicating as in you buying your own Carb, whereas people buy there own thyroxine or such like and totally go it alone.

I hope your remission goes well, I relapsed many times and even 20 odd years after thyroid surgery Graves returned yet again.

bantam12 profile image
bantam12

It sounds as if you are not being managed properly, whilst you have hyperthyroidism you should be under the care of an Endocrinologist. If you have been on Carb for some years without trying for remission it's probably time to question your GP and ask to be referred back to a Consultant.

Silver_Fairy profile image
Silver_Fairy

How do you feel at present? Any hyper symptoms?

It may be an idea to get your blood tests results from your GP and start another post so members can advise. Dont forget to also post the ranges (the numbers in brackets, as different labs have different ranges)

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