Coming off carbimazole...

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Hi anyone have any advice about coming off carbimazole? My endo is crap! No I can't see another one as only one in my area! Ugh! Had two normal blood tests for t4/t3 in fact dropping to lower end! TSH still undetectable but that can take months to catch up! He wants me to take 5 mg daily but it was killing me so he agreed to 5 mg every other day! Same still killing me so now I'm taking 2.5 mg every other day! I want to come off it though as I never wanted to take it in the first place! I want to swap to lemon balm! Anyone else have any advice ie how many clear blood tests before coming off. He's said September time but I want to try before! Don't lecture me about listening to them please haha I know my body and I'm pretty much sure I'll go under if not careful! Thanks in advance ??

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  • Posted

    Hi Karmaway, my advice would be to go with your instincts. I was diagnosed with Graves Disease about 7 months ago; I accepted that I was hyperthyroid but I really didn't think that I had Graves. Anyway after reading up on Carbimazole I decided that I didn't want to take it so I didn't!! My specialist was horrified and told me that I would die without it but according to the side effects I could have died if I had taken it. Anyway I agreed to take propranalol for the increased heart rate and the shakes. That made me very achy and tired all the time so after a month or two I slowly wraned myself off of them. During all this time my blood test results were going in the right direction of normal. My first results were T4 30.4, T3 15 and TSH 0.01 and my latest are T4 15.2, T3 5.2 and TSH 0.04 and I consider these to be normal. All I did to cure myself was read up on the immune system and what to eat and what not to eat. That's it really, I just hope that my test results continue to be nomal Good luck to you.  

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    • Posted

      I'm totally with you on this! I don't think I have Graves either but more inflammation in the body which shoes antibodies! I really begrudge taking it and can't wait to be off the stuff!! That's great that you read up about it! Would you mind pointing me in the direction of the info you found? You can always message me if easier! I think now mine is in range it's going to be easier to keep it there and with 6 weekly bloods I can keep my eye on it that way! I am a bit worried that it will trigger off again as due to have an op but I truly believe it was stress that caused my thyroid to malfunction! I also eat Paleo and this helps immensely!! Sugar and wheat both being pretty toxic for me!! What triggered your thyroid to go over active? Maria x

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  • Posted

    Firstly, I completely understand how you feel. After 9 months on carbimazole and the endo wanting me to stay on a high dose I was feeling rubbish so I gradually reduced it myself until I was down to 5mg. Then I had 3 normal blood tests (slightly on the low side) and endo wanted me to stay on 5mg but I didn't feel it was right and so gradually got down to 2.5mg every other day. But then my hyper symptoms returned and I was feeling worse every day so I put myself back on 5mg and reduced down to 2.5mg a day. I feel MUCH better. I thought I could come off it, but unfortunately not yet. My bloods aren't due until June and I feel the GP and endo are just flailing in the dark, so I am listening to my body and doing what I think is right. But obviously, I still need the carb much to my disappointment.

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    • Posted

      Thanks Evergreen that's what I'm thinking! So I tried cutting the carbimazole back to 2.5 mg every other day and bam had a massive episode of stress!! Thyroid back up to top range!! I'm back to 5 mg every other day !! Ughhhh!!

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