Tapering off Carbimazole

[mentalbandwidth]

GP has advised that I was to stop taking my carbimazole at appt today as my bloods are showing as in range. I asked about tapering down and she wasn't very helpful her advice was just stop? Currently on 2 x 5mg tablets which I take one tablet at breakfast and then other at dinner.

I'm thinking spilt one 5mg tablet and take it twice daily or is this going to cause me issues. Appreciate any wisdom ✨

Sorry you haven't had a response yet - I was on carbimazole for 18 months, and I tapered rather than stopping suddenly, but that's just my personal experience and I can't give you medical advice of course... Are you seeing an Endocrinologist? I'd have thought they'd be the right person to supervise it rather than a GP.

I'd recommend Elaine Moore's books and website - she's the expert on Graves and has a forum where she answers Member's questions. And Thyroid UK's HealthUnlocked site is good too.

Hope you feel better soon! Nothing with thyroids happens quickly, they say, and changes in drugs can take a while to show up, but learning not to rush things is one of the lessons of thyroid disorders... 🙂

I stopped my carbimazole in October last year, but I was already down to just 5mg per day. So far so good according to my blood tests.

How have you got on @mentalbandwidth ? And I agree with @Compash you should be being monitored by an endocrinologist and not your GP.

Thanks for the responses @Compash and @Swanhilde

I ended up doing the tapering and it wasn't as bad as I anticipated.

Seem to be doing OK, getting some symptoms again which would indicate thyroid isn't behaving. The weight I put on has dropped off again, period is weird but then that could be because I'm 8 months post partum.

The endocrinologist won't see me for an appt as I'm not deemed hyper enough but GP has been getting clinical advice from them via email on how best to manage things. Still waiting on thyroid scan and next bloods are on 15 April. If I'm still not right I'm going to explore seeing an endocrinologist privately using works medical insurance as this can't go on 🫠

Glad it's going okay @mentalbandwidth

If it's any consolation, as soon as I stopped taking the tablets I was convinced that my symptoms were back! But a blood test put my mind at rest - tsh was on the border (it's rarely above 1) but T4 was well in range.

I've stopped worrying so much now, but I do think we become hypersensitive as uncontrolled hyperthyroidism is just so horrible.

Good luck with your tests - my next ones are in May.

I do think we become hypersensitive as uncontrolled hyperthyroidism is just so horrible.

I do agree with this! I seem to remember the same feeling when I'd just stopped, @Swanhilde , and even four years out I can still go 0 - 60 very quickly... 😄 Trying to meditate and be mindful and chill the hell out...

I sometimes keep an eye on my baseline heart rate, that can go up or down by ten points depending on whether I'm feeling hypo (with fatigue and puffy eyes and face) or hyper (a complete brat). And I'm swithering about trying the self-test Thyroid kit to Boots (£9.99).

Using the works insurance might be a good idea, @mentalbandwidth . How long have you been taking the carbimazole? They usually recommend at least 18 months, but being postpartum could complicate things, it's a classic time for temporary thyroid issues. But don't be in any hurry to get your thyroid removed or irradiated! Elaine Moore has a lot to say about this... 😁

Good luck!

Do you have Graves Disease as well OP? If so, don’t just come off carb. You need to get copies of your blood test results and learn how to read them. Endos treat your thyroid, they don’t treat Graves’ disease, if you have it.

I appreciate I am 3 weeks or so late to your post though.

@lumierplate would you mind expanding please? I have Graves…on my 4th flare up in 10 years. Done the whole carbimazole treatment taper remission thing to death. How do you actually treat the underlying Graves as opposed to the symptoms?
<sorry to derail thread!>
OP…I have always tapered off too down to 5mg a day for a few months then off altogether…it always comes back for me unfortunately but I’m keen to avoid the more drastic removal or radioactive treatments.

There is no point coming off carb unless your Graves’ disease is fully in remission. A lot of consultants, for some reason, refuse to test your TRabs again after initial diagnosis. You are very likely to go overactive again if your graves is not in remission and that can only be confirmed by the relevant blood tests. Even if you are properly in remission you can of course go overactive again but at least you have a chance of staying in remission if you are fully in it.

Basically, I believe endos just want you off their books and back to GP care so if thyroid results are within range they do that. I believe it costs quite a lot of money to retest TRabs.

Getting graves into remission is just time. Consultants get to the magic 18 months on carb and just want you back to your GP or push you to have a definitive treatment. If you have a definitive treatment, you still have graves. Having your thyroid removed or having RAI does not cure Graves’ disease.

@lumierplate I had my thyroid removed and it did cure my graves, it is possible. My antibodies never came down on carbimazole, and my TSH never got into the detectable range. I had my thyroid removed and 4 weeks later the antibodies were gone!

Thanks @Swanhilde I’ve just stopped taking mine after being in range for over a year and I’ve been paranoid also as have been starving but as you say it’s the body leveling out and yeah worry haha!