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Hi everyone

I got my levels into the normal range quickly by following gluten free, supliments with very low carbimazol. I was diagnosed 18 months ago. I stayed on 1.25 every other day for 6 months against consultants advise. They do make a difference. I stopped with them last month. I am hot hyper again. But results show me I am on the way. TSH 0.8. (0.3-4.2) T4 19 (12-22)

I have also stopped taking acetyl carnitine. Any ideas advice welcome. Debating whither to go back on carbimazol at low does or see if thyroid can work a bit harder. Antibodies still present but going down. Thanks everyone.

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  • Posted

    I'm on another Board and they don't recommend stopping meds until your antibody levels are well within the normal range or you will experience a relapse.  You are euthyroid (normal thyroid levels) but not in remission (normal thyroid levels plus normal antibody levels).   I have been on Methimazole since 2007, currently on 2.5 mg daily and my levels including antibodies are normal.  Seeing my Endo next week.  He has left the decision up to me about stopping meds.  I would say if you do stop meds, to stay on Regular L-Carnitine, not Acetyl-L-Carnitine.  Sounds like you are doing great so far.
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    • Posted

      That's great Linda I was so hoping you would reply to me. How long for antibodies to go do you think. Why the regular caritine? And what dose? Good to know just put myself back on acetyl. Thank you
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  • Posted

    It takes a long time for the antibodies to go down.  I never stopped my methimazole though I did stop and start the Acetyl-L-Carnitine and finally stopped the carnitines altogether because I was having palpitations due to bottom of the scale hypo values and that improved when I stopped them.  With the methimazole I just kept lowering my dose to the current 2.5 mg once a day.   I think the Carnitines make quite a difference in going into remission especially the Acetyl, but unfortunately it is so sensitive that it can send you very hypo very fast.  The Regular L-Carnitine is not so sensitive because it only has a little bit of Acetyl in it and it is the Acetyl that crosses the blood-brain barrier.  So you go by how you are feeling and what your labs are.  Your labs only need a little tweaking as most hyper patients feel better when their values are in the middle to upper part of the normal range.  It is also the long term low dose use of the methimazole (or Carbimazole in England) that seems to help people go into remission and get those antibodies down.  If I were in your position, I would take the 1.25 mg once a day, you can take up to 3,000 mg of the Regular L-Carnitine daily if need be, but I started at 500 mg and then increased it as I noted how I was feeling and how my lab values were.  I would also take 1,000 IU of Vitamin D daily.  See where your values go on this and how you feel.  If you feel you are too hypo and need to increase your values, you can take one 500 mg capsule of Acetyl perhaps twice a week and take it instead of one 500 mg of the Regular L-Carnitine.  I have not been on the carnitines since August 2014 but felt okay off of them and my values - TSH lowered but it took quite a bit of time and it never dropped out of the lower part of the normal range and the Frees rose which I needed them to do.  Last year my antibodies had normalized.  Don't know what they are today but I am seeing my Endo on November 5th.  Slow and steady wins this race.  Do not stop the Carbimazole unless your antibodies have normalized along with keeping your thyroid values normalized.  That is true remission.
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    • Posted

      Thank you very very much Linda. I will take your advise. as far as I am concerned you are the expert. I think I might take 1.25 for a week as I am supper sensitive to carbimazol. I may go back on selenium as well. Thanks again.
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    • Posted

      Do you have Hashimoto's?  Usually it is Hashimoto patients that are more sensitive to Carbimazole.  As I said before, you need to be very careful not to go hypo when you take Acetyl-L-Carnitine combined with even a little bit of Carbimazole.  You seem to know how to adjust your meds and supplements to keep within the range you want.  In my case, my doc adjusted my meds dose and I always adjusted supplements dose based on my values and how I felt.
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    • Posted

      Hi Linda. I have never gone hypo and not been diagnosed with hasimotos my dr has said he has never seen anyone respond so quickly or be as aware of the effect of the drugs. I get tinnitus when my levels. I want to try and get my thyroid able to support itself. Thanks again
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