Tappering off Carbimazol advise

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Hello All. I was diagnoised in May 2014 I was original put on 20 mgs Carbimazol. I changed my diet , no gluten took achlyt l caritine and herbs. My blood middle range since Christmas on a daily dose of 1.26mgs. I quartered the pill. I have felt good thehe whole time. Saw end this morning. She suggested I come off it all together. What do you all think. I know I have read here that a gradual reduction is recommended. She seemed to think my dose is homeopathic? What do you all think. Not too sure about stopping suddenly after only 12 months on carbimazol.

All advise readily received.

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  • Posted

    I have had a similar course to you and currently my labs are all good.  Am taking 2.5 mg of methimazole, (i.e. half of a 5 mg tablet) (same as Carbimazole in UK).  My Endo says he does not advise his patients to discontinue methimazole unless their antibodies have normalized as well as their thyroid tests.  The antibodies that are checked for Graves are TSII and TRab.  If they are normal, and your lab results are normal, then it is okay to come off methimazole.  He has left this decision up to me and I am just awaiting the results of my TSII antibody test. 
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    • Posted

      Thanks very much Linda. Good to hear from you. My antibodies were still raised last time about 3 months ago. Endo this morning very certain about definately coming off in October. But if the dose is so low then what would matter. She didn't think it would be having any effect but I am not so sure. Do you have any idea how long the antibody reduction time is? Thank you
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    • Posted

      As far as my own understanding, there is no cure for the antibody, and it

      fluctuates. So efforts are needed for the rest of the life to keep it down as much as possible.

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    • Posted

      I never made efforts to lower antibodies because I never heard of anything that could do that.  Also it is not customary for docs to measure antibodies routinely in follow up.  My efforts were directed at normalizing my TSH which happened for me when I added the Acetyl-L-Carnitine to my treatment regimen along with vitamin D, fish oil, and other supplements.  However, it was a real juggling game to normalize my TSH and keep it stable because it was so sensitive to the Acetyl.  At one point last summer, my TSH was 2,.7 and my Frees were right at the bottom of the range.  As well I was getting palpitations so I stopped the Carnitines altogether and was told to lower my Methimazole to 2.5 mg.  I have since learned from other Graves patients who are on another Board that one of them was instructed by her doc to take a block and replace regimen while on a low dose of methimazole, so she took a low dose of methimazole and a low dose of Synthroid and that normalized her antibodies and stabilized her so she could discontinue meds altogether.  Her son has been in remission with this method for 9 years and she has been in remission for 4 and a half years.  As well another lady on the Board tried it and has been in remission for 4 years.  
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    • Posted

      Thanks Linda.

      The endo says to not stay on it longer than October, because of the liver. Surely if the dose is homeopathic it shouldn't be effecting the liver. She was very clear about the odds being stacked against me. Made me feel quite depressed and hopeless. Need some renewed faith!!!

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    • Posted

      I asked my Endo about that too and he said he could not state for certainty that the liver would not be affected at a low dose, although I am checked for liver enzymes every time I see him and in between, about 4 times a year but I think if your liver enzymes are always normal when checked like mine were, that I would not expect them to be abnormal on a low dose.  The people I see who have abnormal liver tests seem to always be the people on high doses.  I do think the most important thing is to ensure your antibodies have normalized before stopping it.  I also did take a supplement that helps the liver but I have run out and have to get more.  I am so happy to hear that you have done as well as you have and I am assuming that you are feeling well now in terms of your hyperthyroidism having resolved?

       

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    • Posted

      I think that is what most docs think because most people with this disease are not able to normalize their antibodies.  However, I think the docs have not kept up with all that can be done for this disease, are mostly programmed to treat it the way they did 30 years ago with either ablating the thyroid with radiation or thyroid surgery after trying a short course of meds, and are not open to new information.  My posting above where I shared about the block and replace method on lower doses is only followed by a couple of docs who knew about it.  Also my success with Acetyl-L-Carnitine is not being investigated by any formal medical studies and should be as they did do a formal medical study on the success of regular L-carnitine.
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  • Posted

    You might find if you are tested now that your antibodies have normalized.  I think even the low dose of Methimazole makes a difference.  I have always been careful to only lower my doses by small increments like 2.5 mg.  I think that this makes a difference to stabilization of the disease.
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  • Posted

    I have mostly been of the opinion that you should lower your doses of anti-thyroid drugs gradually and not all at once, but maybe that depends on how your body is responding to the treatment.  I was told that the Methimazole I was on, much like Carbimazole, remains in the system for about 3 months after discontinuing it.

    It is my opinion, but not necessarily substantiated in the medical community, that the antibodies we produce is somewhat in response to some perceived "illness".  In other words, if we feel sick, run down, tired, etc. we will be more likely to produce the auto-immune antibodies than if we feel healthy.  For me, going off the methimazole made me feel better, but when I had no way to "decrease" the non-existant dose, I felt worse until I went on Cytomel, the T3 supplement.  Then I felt much better, (at extremely small doses--1/8 of a 5 mcg tablet, then gradually incrementing it.)  With that treatment my TSH rose from borderline low to the middle of the range.  Eventually I added levothyroxine, but the next test my TSH was at zero again, and I was referred to another endocrinologist who had me quit everything.  I felt awful again until my PCP put me on Wellbutrin which seemed to take away most of my symptoms.  I started Acetyl-L-Carnitine about the same time as the Wellbutrin, about 8-10 months ago, and my TSH levels have been much closer to the middle of the range.

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  • Posted

    I have mostly been of the opinion that you should lower your doses of anti-thyroid drugs gradually and not all at once, but maybe that depends on how your body is responding to the treatment.  I was told that the Methimazole I was on, much like Carbimazole, remains in the system for about 3 months after discontinuing it.

    It is my opinion, but not necessarily substantiated in the medical community, that the antibodies we produce is somewhat in response to some perceived "illness".  In other words, if we feel sick, run down, tired, etc. we will be more likely to produce the auto-immune antibodies than if we feel healthy.  For me, going off the methimazole made me feel better, but when I had no way to "decrease" the non-existant dose, I felt worse until I went on Cytomel, the T3 supplement.  Then I felt much better, (at extremely small doses--1/8 of a 5 mcg tablet, then gradually incrementing it.)  With that treatment my TSH rose from borderline low to the middle of the range.  Eventually I added levothyroxine, but the next test my TSH was at zero again, and I was referred to another endocrinologist who had me quit everything.  I felt awful again until my PCP put me on Wellbutrin which seemed to take away most of my symptoms.  I started Acetyl-L-Carnitine about the same time as the Wellbutrin, about 8-10 months ago, and my TSH levels have been much closer to the middle of the range.

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    • Posted

      sorry, something happened.  I got an error message in posting, then I reposted and both of them showed up.
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    • Posted

      The Acetyl part of Acetyl-L-carnitine crosses the blood-brain barrier.  I think in doing that it helps to get your medication into the cell nucleus.  In my case caused my cells to absorb more methimazole without having to increase my dose of it.  In your case, it might be absorbing more of the Wellbutrin without your having to raise the dose.
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    • Posted

      Or it is helping the carnitine get into the cell nucleus.  Carnitine does something positive for the thyroid.  I really wish the medical profession would do a study on it in hyperthyroid patients.

       

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