Dosage advice Carbimazole & ALCAR

Edited , 5 users are following.

I am hoping some knowledgeable people on here will be able to advise me.

I was diagnosed with Graves Disease in March 2018, began on 40mg of Carbimazole and FT3 and FT4 were in range quite quickly, gradually reduced the Carbimazole and currently on 10mg daily.

As with many people my TSH stayed stuck at 0.01 so after much reading around, in August 2019 I began taking 1000mg of ALCAR with my Carbimazole and my TSH has risen (my GP was sceptical but I don’t believe in coincidence).

My blood results on 14th Jan were:

TSH – 0.70 (0.35-4.94)

FT3 – 3.9 (2.63-5.70)

FT4 – 13.2 (9.01-19.05)

I would be grateful for any advice as my next blood test will be in 3 months and I want to avoid going hypo in that time.

Thanks in advance.

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  • Posted

    Hello Yellow Wave,

    Well done on getting your TSH up. I am 100% certain it is the ALCAR that has moved it. I have been experimenting for years with it and feel I have a little bit of understanding only now. However, I, like you, have only managed to keep my levels consitently good in the last year. As a rule of thumb, I would see the carbimazol helping to regulate the T4 and T3 and carnitine and A.C the TSH. If I was you, I would stay on th AC until its up a bit more and reduce the carbimazol to keep from going hypo.

    Last year having been taking hardly any carbimazol or carntines my levels went up again, I felt like I was right back at square one, except this time I had more information. My levels returned to normal very quickly and have stayed in range. T his is what I have been doing: I was put on 5mgs of carbimazol and put myself on 1000mgs of good quality AC. (the endo disagreed with this and said carnitine caused my graves. I have read too many medical articles, and first hand experience to know this is just not true)

    Once my TSH was up and secure I switched to carnitine 1000mgs . I felt myself getting hyper symptoms within days so changed to taking 500 mg A.C and 500mgs Carnitine.

    To keep the T4 in range I lowered my carmbimazol.

    As my Tsh has been sitting near 2 for at least 9 months I have been gently reducing the AC until I was only taking 1000mgs of carnitine

    For example: this month my endo wanted me to take 5 mgs carbimazol every other day so I am trying 1000mgs of carnitine on the days I am taking carbimazol and then a mix of 500 mgs AC and 500mgs Carnitine on the no carbimazol days.

    I will dose the Ts with carbimazol and TSH with the carnitines. Slowly.

    I think I am having more success these days because I am staying on higher doses of the carbimazol and the carnitines for longer than I used to. In the past, I was over keen to come off meds and would drop my doses too quickly.

    This really is a long haul commitment, but I am really happy I have stuck with it. Having been put under huge pressure to have the RAI last year due to a dexa scan showing bone lose and my heart function dropping slightly I was near to buckling. The thought of RAI just seems totally wrong to me and I thought I would keep trying. I am so glad I have. I feel incredibly well!! I am also very hopeful that I will be able to keep my levels good and maybe even get remission. Remission is no longer my goal though, now I just want to keep my levels in the right place. I think this has also been important for me as it stops me rushing reducing my meds to quickly.

    I have also been taking a fantastic powder at night with Vit D, calcium, magnesium, boron and vit k2 . Apart from helping support my bones and heart it also has helped improve my sleep quality. my deep sleep has almost doubled. I think deep sleep is really helpful in the body's repair and hopefully bring down the antibodies.

    Along with this, I have lessened my strenuous exercise, especially anything that puts pressure on my heart. I walk more and do light weights. I have also been practicing compassionate mindfulness and trying to stimulate the vagus nerve with deep breathing. Apart from bring a pleasant way to live, vagus nerve stimulation is proven to reduce inflamation and help in autoimmune diseases. If you live in the Uk the BBC have an old episode on Frontiers radio program you can listen to talking about it.

    Hope you go well. Sounds like you are going in the right direction.

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  • Posted

    Hello brightonbreeze,

    Thank you for your detailed response. I am thinking I will leave the ALCAR at 1000mg and reduce the Carbimazole to 7.5mg on one day and 10mg the next as a halfway house and see how that works out.

    I think you are right about the dangers of reducing too quickly and am mindful of that.

    Many thanks for taking the time to reply and continued good health.

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  • Posted

    No Problem.

    I would probable want to drop my carbimazol a bit more than that but I am sensitive to medication. You know yourself and how you react to meds. I think keeping your AC at 1000mgs is a good idea, I'd even concidering adding some carnitine as well.

    But of course you and your Dr know best.

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  • Posted

    I am pretty much working on my own as my endocrinologist was not very good, told me to drop from 10mg of Carbimazole to zero after a year of treatment and i quickly went hyper again despite me saying i thought it was too big a drop. After that I said to my GP I thought we could manage the dosage without him and he agreed but said he doesn't know a lot about it but is willing to be guided by my research and will be there if I need to consult him.

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  • Posted

    Hello brightonbreeze,

    Do you think it would be a good idea to take 500mg of carnitine on the days I reduce the Carbimazole to 7.5mg?

    Thank you

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    • Posted

      Hi, sorry, just reread, I see its in 3 months. I probably would myself. or else take 1500mg of AC, for a couple of weeks. Are you sensitive to symptoms? I can tell if I am moving too quickly with changes. Keep a record of what you are doing and any symptom changes, then, even if you don't crack it this time, it will help inform you for the next time.

      My TSH was slow to rise, even on AC. Yours seems slow too. It would be good to get it up and remaining up for a little while before dropping the carbimazol even more. Your T4 and T3 is not too low yet so you are quite a wee while from going hypo yet. You will feel it, and see it ( weight gain!). I am hopibg this will come off once I drop my carbimazol and my T4 and T3 come back towards mid range. I just wanted to focus on keeping the TSH in a good place .

      Hope it helps. You're doing really well. It can be a bit of a frustrating trail and error game but I really believe you are on the right path and giving yourself the best chance of getting and staying well .

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  • Posted

    I am not sensitive to symptoms, when diagnosed my only obvious symptom and the reason I visited the GP was I kept losing my voice but only at work, subsequently discovered my resting heart rate was 130 but I had not been aware of it. Since having treatment I have put on two stone and am hoping that when my levels are balanced again I will return to my usual weight.

    I will increase the ALCAR to 1500mg and alternate the Carbimazole dose and see where I get to in April.

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  • Posted

    The only thing I would be thinking about, given the two stone weight gain, is your T3. If I was you I would drop the carbimazole down to 5mgs every day. If you feel to anxious about the wait until April tell your Gp. Especially as she said she would help you. Are you in the uk? If so, the change in medication is a valid reason to get a test sooner than 3 months. You could have one as soon as 4 weeks.

    What you think of trying that?

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  • Posted

    I am in the UK and my GP put in my notes I can have a blood test any time if I think I need one.

    Nervous to make a big drop in dosage as I quickly went hyper previously, so I think I will adjust slowly and hang in for the long game.

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  • Posted

    Your plan sounds good. Given your gos agreement to let you have a blood test when you want, why don't you retest in 4 weeks. Just so you keep an eye on how your TSH is responding to the increase. You also want to keep an eye on your T3, if that gets any lower you'd want to reduce your carbimazol more. Let me know how it goes. Fingers crossed

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  • Posted

    I am so happy to see patients doing so well on L-Carnitine and ALCAR and meds. While it is an individual journey depending on your meds dosages and results, so many of you are doing so well and I hope as I do that you feel well also.

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    • Posted

      Thank you Linda. Its you I have to thank for finding out about carnitine and ALCAR . You have helped me so much and I am sure so many others. You are so generous with your knowledge and time. It has been greatly appreciated. You have also been an inspiration. So glad to hear you are still keeping well.

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  • Posted

    hi,

    Just wondering how you are doing, I am thinking of you.

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    • Posted

      Thank you for your interest.I am well I think, have been very tired but my daughter had an emergency c-section this week so an emotionally draining time., but both mum and baby doing well now. Will see if the tiredness continues and book a blood test if no change.

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