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long term carbimazole

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I am on carbimazole and propranolol for a very overactive thyroid. My GP has suggested radioactive iodine. Why can't I have carbimazole indefinitely to deal with the hyperthyroid instead of having radioacive iodine and then becoming hypothyroid (which often happens its seems) and then having to take levo? is there a problem with taking carbimazole?

4 likes, 127 replies

127 Replies

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  • fern12
    fern12 Guest

    Posted

    For me, the best thing about Methimazole [much like Carbimazole] was very gradually going off of it.  My TSH did not rise into the normal range until that.  After I was completely stable without any thyroid or anti-thyroid drugs, about 2 years ago, I started taking four new things. 1) Wellbutrin, by prescription, which helped immediately with my symptoms, 2) Acetyl-L-Carnitine which may be helping with keeping my TSH in the normal zone and reducing brain fog and any small muscle weakness, 3) Methylfolacine and 4) Methyl-B12 which may help with T4 to T3 conversion.  Those last three I buy at a health foods store.

    I feel much better than I have in years, and wish other sufferers could feel like this.

  • marina166
    marina166 Guest

    Posted

    I have Grave disease...hyperactive thiroid with a lots of nodules ..but it has been very well under control for many years..

    After different dosage the first few years

    ..now I can say it is 30 years I am taking Carbinazole tablets . . They might have give some side effects but tolerable .. also pain in my joints...

    They offer me radiation at 36 years but I refused because of risks of infertility ...then they hint to have an operation at 45 years...that I did not feel appropriated because I have been symptomless ..

    now I am 64 years of age still symptomless ..but doctor are very persistent in operate me ... there is always risks ..plus I am asthmatic ......

    I would like to receive opinion from other people takin Carbinazole such a long time like me...

    A professor in the past told . I may can go on forever like that...

    it's important have more than 2 opinions

  • cyril52616
    cyril52616 Guest

    Posted

    I am a hyperthyroid patient since 2008 with 0.001 TSH. I was priscribed 20mg per day and reduced up to 5 mg.  I went under radioactive iodine hald dose in Year 2014. It didn't worked me. After 3 months my TSH dropped again up to 0.004. I was given 20mg again and reduced up to 5mg. sincce then I am continuing with Carbimazole. I was asked to go for an operation, since  I do not need to go for an operation I am living with Carbimazole. My age is 65. 

  • sharon39286
    sharon39286 Guest

    Posted

    I also take carbimazol, and cannot get an answere to my question, is there a problem with taking them long term.
    • shimself
      shimself sharon39286

      Posted

      When you first start taking carbimazole there is a small risk.  After some time the risk is reduced but is still there.  You always need to bear in mind the warning signs (sore throat etc).  However in my view this risk is far smaller than the risks associated with surgery. I also hope that one day a cure might be found which leaves me with a working thyroid gland (and indeed there is hope - google graves tetrotumumbab)   My post above has some references to studies of long term use.

      I'm afraid with Graves there are risks whichever choices you make.  (I'm not a doc)

    • fern12
      fern12 sharon39286

      Posted

      I'm glad I did not let them destroy my thyroid. I was once on Methimazole, much like carbimazole, but I have not needed it for a few years now. I feel quite good now, being on ALC, methyl B12, methyl folate, [all over the counter at a health food store,] Rx for Wellbutrin, and a Brasil nut or two per day. The last time I had thyroid tests, my TSH, FT4, and FT3, were in the normal range, with my auto-antibodies virtually non-existant.

    • sharon39286
      sharon39286 fern12

      Posted

      Thank you for your input, all information gratefully received.
    • sarah85431
      sarah85431 sharon39286

      Posted

      There bad for ur liver

      I am also on them I was on 20 now I'm upto 40 but now I have liver problem and not red blood cells x

  • rob69439
    rob69439 Guest

    Posted

    hi all i have overactive and have been mess around by diffrent mg so i decided to take control of my owen meds i fill great at mo have my bloods thursday however i do not want any of the extreme treatment that the docs are saying so i have done my owen research and there is a American doctor that is saying that we are all going about it the wrong way he is saying that it is certain foods that is causing under and overactive thyriod and that we should avoid these foods at all cost he is saying it is certain bacteria in the gut that caused thyriod problems in the first place here are some foods that i have found out sprouts, brockly, cabage, will make your tyriod high there are allso foods to lower thyriod but i will do more research as every one is diffrent but i have stoped eating theses foods and allready feeling better i found nuts is a great one for lowering thyriod so it got to be worth trying to avoid all theses cemicals going into your body i hope that this might help everyone to at least try before you try the extreme after all good food will improve all your immune system witch in turn will help your thyirod irs worth a go

    • fern12
      fern12 rob69439

      Posted

      My experience is that taking Acetyl-L-Carnitine is the single best thing you can do to help have a good outcome in your blood test. I don't know how long you have to take it before it has an effect, though. Eating red meat, like beef, is also helpful since it is high in carnitine, which is an amino acid. It is an amino acid not considered essential because it can be made in the body, and a baby is likely to die if born with a defect in the gene that matches from both parents. Carnitine is tested at birth, now, and babies that need it are given supplements. I have also heard that it can be depleted when your thyroid is over active.

  • sarah85431
    sarah85431 Guest

    Posted

    hi guys I've had gravesend disease for 9 month still not under control does any have problems with red blood cells and liver ?

  • Melanie_Lim
    Melanie_Lim Guest

    Posted

    Hi I was diagnosed a hyperthyroidism 1 week ago and is taking Carbimazole 5mg 3 tablets 3 times daily. I feel  physically very tired & eyes alsovtired especially towards the afternoon. Is this a normal side effect?  Worrying ....

    • fern12
      fern12 Melanie_Lim

      Posted

      You may be over-medicated. You could ask your doctor, but if I were you I would also take Acetyl-l-carnitine which you can get at a health foods store. I believe it helps your TSH to rise and show more accurately what is happening with your thyroid in your next blood test.
  • manas81
    manas81 Guest

    Posted

    I hv been on carbimazole for last two years. Every six weeks I hv to do blood test FT3, FT4, TSH. Last 3 months I am on carbimazole 15mg. Now TSH is lower than than lower limit... It s not stay at same level. Now my dr. advice to go through Radio Iodin. Which I am not willing to do.... Please digest.
    • shimself
      shimself manas81

      Posted

      What about your FT3 FT4 levels, are they too high?
    • manas81
      manas81 shimself

      Posted

      Thanks for your comment.

      Now FT3, FT4 are in normal range, but TSH is falling beyond lower range..... I was advised to take Carbimazole 15 mg 4 months ago. Blood test report was ok 2 months ago. And I was advised to continue the same dose. Now my latest report 1 week ago shows TSH is low.

    • phyl03387
      phyl03387 manas81

      Posted

      Best advice is to discuss this your consultant as our thyroid problems are very individual. I found the website for British thyroid foundation was very helpful.
    • shimself
      shimself manas81

      Posted

      My results are similar, FT3 FT4 in range, TSH low or just in range (Trab low but not zero).  It's been like that for years, my endo is happy to leave it

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