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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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  • julia47847
    julia47847 Guest

    Posted

    I've been on carbimizole for about 6 years down to 5 mg a day the last 3 years, don't want op or ra as so many other issues come with both. 

    A private gp who deals with thyroid said don't let them touch your thyroid! The endo said they didn't actuall know what damage carbimizole does but usually only keep older people on it.  Anyway you just have to get as much advice as possible and make your own decision. I had TED so was worried. Am pretty well now.

  • fern12
    fern12 Guest

    Posted

    I guess it has been over 2 years since I saw the 4th endocrinologist.  He made me go off the T3, but I was given Wellbutrin by my GP which made the world of difference in how I feel.  I also started taking Acetyl-L-Carnitine, Methylfolate, and Methyl-B 12 at the same time, so everything might not be due to the same thing.  I attribute the stability of my TSH to the ALC, and better conversion of T4 to T3 to the Methyl vitamines.
    • ling123
      ling123 fern12

      Posted

      How did the wellbutrin help?

      Thank you

  • joannagof
    joannagof Guest

    Posted

    all this stories scare me!

    i dont want RAI either!

    i would definetely dont want radiation near everyone i love!

    And it is not that easy as the dotors say!

    Surgey is better but still is scary!

    you cant stay on carbimazole for ever because it can cause serious blood problems or liver problems...also the dose is never NEVER the correct dose you have to take everymonth blood tests!

    so you can never have a normal life!

    why dont i have to go through this i dont know

    • shimself
      shimself joannagof

      Posted

      But you CAN stay on carbimazole for many years, and you may get better (studies below).  The dose of carbimazole being low in long term use, it is more likely the levothryrox (and T3 if you like) which needs monitoring, and that is the case whether you have carbimazole, surgery or RAI.

      Here are the studies:

      Sustained Control of Graves’ Hyperthyroidism During Long-Term Low-Dose Antithyroid Drug Therap of Patients with Severe Graves’ Orbitopathy

      Peter Laurberg, et al     THYROID, Volume 21, Number 9, 2011, DOI: 10.1089/thy.2011.0039

      Conclusions: Prolonged partial block plus replacement therapy with low-dose ATD+ L-T4 keeps the majority of patients with severe Graves’ orbitopathy and hyperthyroidism stable and euthyroid.

      Outcome of very long-term treatment with antithyroid drugs (Block-Replace) in Graves' hyperthyroidism (GH) associated with Graves' orbitopathy (GO).

      Elbers L, Mourits M, Wiersinga W.  Thyroid. 2011 Mar;21(3):279-83. 

      “Patients were treated with Block-Replace for a median of 41 months (range 24-132)   The data suggest that B-R treatment of GH until GO has become inactive and does not require any further treatment is a feasible option and does not jeopardize the improvement that occurred in GO.”

      Long-Term Antithyroid Drug Therapy with Thiocarbamides

      De Groot et al

      Esp ref 126.1 Azizi F, Ataie L, Hedayati M, Mehrabi Y, Sheikholeslami F.Effect of long-term continuous methimazole treatment of hyperthyroidism: comparison with radioiodine.    Eur J Endocrinol. 2005 May;152(5):695-701

      Conclusion: Long-term continuous treatment of hyperthyroidism with MMI (methimazole) is safe. The complications and the expense of the treatment do not exceed those of radioactive iodine therapy.

      Should Protracted Treatment with Antithyroid Drug (ATD) Be Considered as A Routine Strategy in Patients with Graves’ Disease Who Had a Relapse after a First Course of ATD?

      Jacques Orgiazzi et al    Clin Thyroidol 2015;27:302–305.

      Conclusions   The use of low doses of MMI is efficient and safe and offers better outcomes for GO than RAI treatment. 

       

    • phyl03387
      phyl03387 joannagof

      Posted

      Hi Joanna I've been on a reasonably high dose of carbimazole for over 20 years now on a block and replace basis with 25/50 mcg of thyroxine and 20 mg of carbimazole every day and am absolutely fine.  No serious blood or liver problems and have a good normal life.  So as I;ve said in the past, we're all individuals and what works for one doesn't always work for other people so have a good open talk with your  consultant about all your worries and everything that affects you connected to your medication.  There is light at the end of the tunnel, but if you don't tell the consultant absolutely everything then they can't be responsible if they suggest a dosage or treatment that doesn't suit you.

      These are my thoughts, for what they're worth.

      Phyl

    • shimself
      shimself phyl03387

      Posted

      No kidding we are different - I am on 5mg carbimazole and 88ug (88mcg) levothyrox
    • ling123
      ling123 shimself

      Posted

      Whoa! Thank u so much for all the info. Thank you
  • bridgette2
    bridgette2 Guest

    Posted

    After being treated for Graves for over a year and not being able to get my symptoms under control, my Endo decided I should have my thyroid removed. The op was successful but when I went back for the post op check-up I was told that my thyroid had been cancerous. I have since had Radioactive Iodine treatment and am now cancer free and symptom free :-) 
  • jane95340
    jane95340 Guest

    Posted

    Hi Do you have your results? Carbimazole is only given for a short time so I have been told.

     

    • phyl03387
      phyl03387 jane95340

      Posted

      Yes I have my results that I have charted for many years and this shows how difficult it was to manage my condition by just taking carbimazole alone. This is when NY Consultant decided to try the block and replace method of medication which luckily has been successful in my case. This being my experience that we all need to be assessed individually and how important it is to be as frank and clear as possible about your symptoms. Hope this helps.
    • phyl03387
      phyl03387 jane95340

      Posted

      Yes I have my results charted for many years. which indicated that block and replace was good for me. Consultant told me that generally if you don't get a reaction to Carbimazole in the first few months of taking it you should be ok and luckily I have been. Hope this helps.
    • shimself
      shimself jane95340

      Posted

      My post above ( a week ago) shows lots of studies which say that it IS ok to use carbimazole (or MMI) for many years.  They used to tell us that it was 18 months max (no idea why, and I have asked and not got a answer). 
  • amanda11516
    amanda11516 Guest

    Posted

    Hi. I've only found this site today. I have been on Carbimazole for 23 years. I had been treated at my local hospital by a consultant physician. He never pushed me into other treatment, but occasionally reminded me about them. When he retired I was passed onto his younger replacement, and because I was still resisting RAI he told me there was no longer any point in him seeing me. I self medicated, for a while, until I realised that I had become hyper again. I returned to my GP who referred me to an Endo at another hospital. I still refused RAI, but decided to think about opting for surgery. I have to say I did feel pressurised. I attended for my pre-op assessment this morning. I had a long chat with the nurse who is referring me back. I told her I am not happy about the operation either and would really rather not go ahead. My main reason is that my body has coped well with the carbimazole, I am generally very healthy and quite fit. My worry is that if I lose my thyroid completely, I may become to feel unwell due to going hypo. I don't want to go from feeling well to feeling unwell. I wish the doctors would discuss things and listen to concerns instead of pressurising people into having irreversible treatment.
  • l21233
    l21233 Guest

    Posted

    Yes I believe there is - long term carbimozole has started making my joints ache, and I'm at risk long term of having a reaction to the drug where it destroys white blood cells (which can start with temp/sore throat and end with being very dangerous & life threatening). Short time carbimozole is extremely helpful with overactive thyroid, and (for some reason I don't understand) the specialist likes to take you off this drug slowly. I was on carbimozole for 2 years exactly, then had a relapse 3 years later and have been back on the drug for the last 10 months. As long as the dose is high enough initially (for me 20mg) then symptoms (horrendous) clear up within 2-3 weeks and I'm later slowed to 5mg long term. Hoe that helps. By the way radioactive iodine is not an option for me as I have young children and thyroid removal is not really an option as I use my voice for my work, and the op brings risks.
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