long term carbimazole

Posted , 36 users are following.

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?

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  • Posted

    with my experience. I was taking carbimazole and prop for 3 weeks and i've been itching like mad. I went back to the docs and he took me off both and given another prescription which is prophyltiouracil. Been taking it for 3 days now, still itching. I think, id rather have iodine treatment than this itch. It's drives me crazy, i can't sleep.
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  • Posted

    Usually they give you about 18 months on carbimazole, and then see what happens if you stop taking it. If you get overactive again you need more definite treatment like RAI or surgery - and yes, usually you'll end up underactive then. Carbimazole is not something you can stay on forever. I've been on it since June and am doing well, not going to worry about the future yet as I've still got over a year of treatment on carbimazole to go.
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  • Posted

    I am also wondering why cannot I stay on Carbimazole forever and control thyroid that way. I do not want to have RAI, apart from general unwellnes many report afterwards it appears you can even set airport security on with the radioactivity you have in you, you are advised not to touch other people for at least 2 weeks - well, how good is then for you if for others just coming close to you is bad.

    I do not have any side effects of Carbimazole - no itching, no sore throat, no ulcers, White Cells blood count is fine... so apart from these, is there any other reason why couldn't I stay on Carbimazole and control my thyroid this way?

    Are there any long term effects of taking Carbimazole for a long time?

    I am on 12.5mg daily.

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    • Posted

      Hi I've been carbimazole for over twenty years with no problems. Think each decision should be made on an individual patient basis with your consultant. 
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    • Posted

      Hi. I have been on carbimazol for 6 years. Very low does between 1.25-2.5. My levels alternate within range all the time. Frustrating not to be able to find a maintainable dose. Where you the same or did your levels stay fixed. Can I ask you what dose of carbimazol you were on? Thanks 
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    • Posted

      5mg/day (and levo 88ug).  My levels have stayed more or less in range, never varied enough to warrant a change for 5 years now.  TSH low end, FT3 low end, FT4 mid range and the damned TRAB just about positive (ie indicating the disease is just about still there), as do the doppler tests my endo performs.
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    • Posted

      Hi, thanks for your reply. I am reluctant to go to my endo as she never believed that such a low carbimazole dose is anything more than "homeopathic". Fine by me as I believe in Homeopathy, but I fear she may not. I only take carbimazole. My current GP, and my last GP, can see the direct link between my dropping from 2.5- 1.25 doses and do believe me but I am constantly having to alter the dosage. I seem supper reactive in even the most minuscule changes. Sadly I go hyper if I try to completely come off. I too have TRAB currently about 80. Not huge but not as low as I wish they were. I have never had a doppler test, what is that for? Are there any other tests which Endo checks that GP  wouldnt think of? Thanks for your advise.

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    • Posted

      There are several studies, this one is new and has reasonable numbers (not just a few patients).  https://www.medscape.com/viewarticle/887486  ; It specifically mentions <5mg   Your endo sounds a bit behind the times, although at least she isn't trying to remove yr thyroid gland altogether.

      The junior endo at my clinic also said homeopathic, but the senior one (who has recently been accepted into thr EUGOGO expert research group was cool with it.  He uses a doppler (blood flow like one scans foetuses) and can see activity around the thyroid which indicates the disease is still active.  eg https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5401130/

      We must have different units for TRaB.  Mine is <1 negative 1-2 maybe >2 positive.

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    • Posted

      Thank you for the information. 5 mgs would have me hypo in a day! 2.5mg at present because I was going hyper again down at 1.25mg three days a week. I can’t find does for consistent maintainable levels. Your first link would not. open for me. The second was fine. Thanks again
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    • Posted

      I have been off of all anti thyroid drugs for several years, now.  I feel great and only need blood tests once a year. I won't need to see the endo again unless my tests show I am hyper again. I feel like my success is due to taking my health situation into my own hands, but it started with the endo reducing my methimazole by 1/2 tablet per week, after that, I judged for myself whether I could skip a dose, readjust my own dose or whatever I thought I needed. I was careful to adjust my dose in small increments like he did, and to be consistent at least between the time I saw the doctor and the time of my next test. I reported how much I actually took when I saw him again, and he was agreeable to that after the fact because my test results were in range. When I stopped the MMI altogether I began having trouble again because I could no longer take less of the drug.

      Now the things that seem to help me feel good and to stay in range are:

      1- Wellbutrin [Rx]

      2- one or two Brasil nuts per day [for selenium]

      3- Acetyl-l-Carnitine which seems to keep my TSH levels from falling, [and]

      4- Methyl-B12 and Methyl folate which seem to keep my T4 converting to T3 in an appropriate manner.

      I should also say that I took my pulse regularly.  It's true it can be fast for a number of reasons, but it seemed to me that it would always be too fast if my FT3 levels were too high. If my pulse was moderate or slow I was not worried that I was hyper.

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    • Posted

      I'm not sure which of the above mentioned things specifically did it, but I think it was a natural thing to happen once everything else was in order and after I felt healthy.

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    • Posted

      1. I had been on T3 replacement for a few months, then was given Levothyroxin, both by my PCP about 6 months after going off the Methimazole, but as soon as I began the Levothyroxin my numbers went out of range again, and my doctor got in trouble. I had to stop the supplements and see an Endo again. Then I struggled with my old symptoms and my doctor put me on the Wellbutrin.

      2. I read that selenium is important for the thyroid and that a Brazil nut had about 100 % of the daily requirement, so I began taking one or two per day.

      3. On this forum, I learned from Linda that ALC helped her TSH to rise into the normal range. I searched for more information online and read that having low Carnitine causes symptoms similar to low thyroid. I had also had my DNA tested by 23andMe. There was no report about it but my SLC22A5 gene was slightly different from my husband's, so I began taking the ALC.

      4. The DNA test also showed mutations in my MTHFR gene and I learned that it could also cause the same symptoms. Others with the defects said that taking methyl B12 and methyl folate helped them. I also read that there is a methyl cycle in the body which helps convert T4 toT3 in a deionization process.

      Those 4 things are the ones that seem to make the most difference to me, and I notice it if I miss one of them.

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    • Posted

      Hi fern12, many thanks for your replies. Just to touch base. Very busy these few days. Will be back with further reply. Really appreciate your taking the time : )
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