side affectsCarbimazole

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I want to know what are the side affects or what can happen if you stop taking Carbimazole after 12years

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  • Posted

    Hello Ella,

       I was on Carbimazole for around 2 years, the Doctor said I could come off them because my Thyroid had stopped being overactive.

      I came off them, only for about 2 months, but, unfortunatley I had to go back on them because my Thyroid went overactive again.....

     I had no side effects or any kind of problem whatsoever when I came off them.

      But I do realize I hadn't been on them for as long as you have.

     If your G.P. says to come off them, they will still monitor your blood and they'll soon know if you need them again.

      I know everyone's different, but, in my case, I had nothing wrong coming off them at all.     

     If you do stop taking Carbimazole,  I wish you well, although, I will say, don't take yourself off them!  I'm sure you wouldn't anyway, just thought I should say it! redface

     Take care of yourself.

      Best Wishes,


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    • Posted

      i have taken myself off them without my Doctors consent they told me 4 and a bit years ago i need to have my thyroid plus the one that sits behind your thyroid removed but they are pushing me down the list because i havent lost weight. i have always put weight on since i first started taking them. so how the heck am i suppose to loose weight if i keep putting it on. i am fed up with the constant blood tests specialist appointments only to be told the same old thing if i need the surgery then why dont they just do it.
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    • Posted

      I know how frustrating the blood tests are Ella!!!!  I never get a reminder, I have to remember to book myself in for one every 4 weeks...well, I have a memory like a, I get a blood test when I remember, I left it 8 months once!!!  and still it came back o.k.!!

        I'm sorry you have to have your thyroid out, and the other gland, but, like you say, why don't they just get on with it??!!   How can you lose weight?  I too have gained weight since being on Carbimazole....seems we can't win in this one.

        But, I do send you my good wishes Ella, and hope against hope that you get good treatment very soon....even if it's an op....

       Take care.


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  • Posted

    I wouldn't stop taking the anti-thyroid drug--Methimazole (MMI), in my case--without doing so very gradually; and I mean in terms of how many milligrams per week.  (The MMI is much like the CBZ that you're on.)

    I actually did go off of it altogether, once, because I couldn't stand it any more.  Then I cancelled my appointment with the endocrinologist and spent a pleasant summer without the MMI.  

    I was forced to go back to an endo, and I chose another one, who started me out on a lower dose.  After raising my dose a little at a time, he was persuaded to lower it again, and I was able to feel much better and my TSH came up from about zero to mid-level or more in the normal range.  The next test showed I was hypothyroid or borderline so, and he lowered my dose again.  From then on I lowered it myself when he wouldn't, but in small decrements and never within 4 weeks of the next test.  

    After about 2 years with that doctor, I was able to go off of it altogether, and it has been over 2 years since I had to take it.  In between there was more drama but I won't get into that right now.

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    • Posted

      I should also say that my doctor didn't always give approval for my dose lowering in advance, but I told him afterwards, and since my TSH stayed in the normal range, he never objected.
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