Stop Carbimazole or not??

[Gymgirl]

Hi Everyone, so I have Graves and have been taking Carbimazole for 18 months (current dose 5mgs a day). Latest thyroid results are good with tsh 0.67(0.35-5.00) free T4 14.3(9.0-21.0) nhs wouldn't test T3 as tsh and T4 within range. Based on these my consultant says it's time to stop carbimazole and see if I go into remission. I decided to do the medickecks TrAb test last week and result came in positive at 4.04 (0.0-1.75), so not much better than my initial levels prior to starting treatment where TrAb results, tested by NHS, were positve at 4.5 (0.0-1.9). So... I don't really know what to do... should i stop the carbimazole and hope for the best or should i show my consultant the medicheck TrAb results and suggest staying on the carbimazole longer? Thanks xx

[asiatic]

I can only pass on what my Endo told me. He said my Trab would need to be under 5 before he would sanction a trial off meds. As I was up at 16 he thought I had a high chance of relapse. Elaine Moore in the US who runs a forum and is very knowledgeable advocates a very slow weaning off carbimazole titrating slowly down to 1mg. or less ( you need to cut the tablets). If you did relapse you could go back on the Carbimazole. There is only one way to find out if you are ready......try and see !

[Greekchick]

Hi Gymgirl,

Are you still having hyperthyroid symptoms or do you feel better on the carbimazole? It’s not just about the numbers - I had excellent blood work when I was on Tapazole, but after 2 years had hyper symptoms again and developed other issues with my goiter that prompted a TT 16 weeks ago. I am also Graves.

Also are you having any side effects on liver toxicity or white blood count? If not, you would not have a problem staying on the carbimazole if you feel better overall.

For me, it has always been a combination of how I feel and what the blood work says. It sounds like your Graves is stable. Slight improvement from before but not remission. This is a real judgement call on how you assess your overall situation. As asiatic says, you won’t know unless you try being off and see how you feel. Unless you are having side effects and as long as you feel well - it’s hard to say.

Wishing you well and all the best!

[ling]

Brilliant question. And very smart move to retest TraB.

The answer is No, not yet.

Check out these 2018 guidelines.

2018 European Thyroid Association Guideline for the Management of Graves’ Hyperthyroidism

karger.com/article/fulltext...

TraB first tested 4.5, now 4.04.

1) Its good in that u can see carbimazole therapy is bringing it down.

2) But at 4.04, is still well above the 1.75 top end of range, so the chances of relapse is high.

3) And while u are off the carbimazole trying for remission, if you have TED, it could potentially worsen or reactivate the disease.

4) And if you have other developing autoimmune conditions like Type 1 diabetes, etc, you are basically giving it the opportunity to develop fully if the remission try fails and u relapse.

5) And TraB antibodies are known to initiate TED, so coming off carbimazole while the level is still high, might put you at risk of TED developing.

Looking through your earlier posts, your symptoms sound relatively mild and nothing major has been mentioned. Is it still the case now? Do you feel well all or most of the time? If you do, then perhaps you might want to give remission a shot?

Personally, I feel if things are going well, and since the TraB level is still high, perhaps another 6 months on carbimazole and then decide again? You are already on track towards a potentially Graves-free future. And I really envy you that : )

God bless you well : ) : )