Needed and appreciated for sharing your experience in lowering TSI

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Hi, Just came back from meeting with my PCP. Very disappointed that my request for a TSI test was denied for the reason: once you got GD, the antibody will always be there in your body, so no need for the test. I know if just take anti-thyroid med alone, the GD won't be cured and TSI won't drop. However, I remember while reading discussions in this group, it is mentioned in several posts that some posters here were able to lower their TSI level with more than anti-thyroid med treatment. I would like and appreciate all sharing of your experience in lowering TSI, especially those are in remission and still be able to keep TSI low or control it at insignificant level (~0).  Thank you for your sharing.

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  • Posted

    Hi, I was diagnosed with a mild case of hyperthyroidism about 2 years ago.  My doctor wanted me to go on Methimezole but I  went the vitamin and mineral route and it has been working for me. I take L-carnitine 1500-2,000mg, Magnesium1,000mg, vitamin D3 and calcium.  Research the vitamin and supplements on line for hyper and give it a try.  If you feel better great but it has to be your decision,  I wish you well 
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    • Posted

      Hi sissy, Thanks for replying. My blood test history looks like the following:

                  TSH(0.40-4.50) T4(0.8-1.8) T3(76-181) TPI(<9) TSI(<140%)

      8/11/05 1.29

      3/14/14 1.15

      3/3/15   1.41

      3/8/16    0.2

      2/22/17  0.01            1.4

      5/8/17    <0.01          1.6              136             1              203%

      7/5/17    <0.01          2.0               160

      8/6/17     0.01           1.5                103

      9/8/17     0.12            0.9                74              1             340%

      Start taking MM 5mg on 7/19 and reduce to 2.5 mg on 9/16. Next test on Friday (no TSI)

      So sissy, how is your latest test result? What is your TSI number? Would like to know your progress on test numbers. Thanks

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  • Posted

    Hi Mike61308, the TSI level is not usually included in a routine thyroid function test as it is a rather expensive test. At least in the UK it was only used to establish my diagnose of GD.

    However, it does vary and before stopping Carbimazole (on the advice of my endo) I had the test done privately. It showed that my TSI level was within normal range. This was after about 18 months on Carbimazole.

    Some research papers discuss the effect of Carbimazole on the TSI level. For example Effect of carbimazole treatment on specific and non-specific immunological parameters in patients with Graves' disease

     

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    • Posted

      Thanks, Dan. As you mentioned, your TSI got back to normal after 18 mo on Carbi, did you take any alternative/naturopath treatment? Do you think your TSI recovery was mainly made by taking carbi long term?  Thanks (will check into the research article)
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    • Posted

      It is difficult to say what lowered my TSI level. All I know is that I have responded very well to Carbimazole and my dose was tapered from 30mg to 2.5mg towards the end of the treatment period. During this time I also took 500mg Acetyl-L-Carnitine per day. 

      After stopping Carbimazole I took Bugleweed and Lemonbalm tincture for a few months. These herbs were recommended on this forum for lowering the output of the thyroid.

      I also took Motherwort tincture as it is supposed to reduce palpitations

      Eventually, I stopped taking the tinctures as well and I have been euthyroid for slightly more than a year. During my last appointment, my endocrinologist told me to have a thyroid function test once a year and to report back immediately should I get palpitations or other symptoms related to hyperthyroidism.   

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    • Posted

      It's indeed unclear if the anti-thyroid med would have the effect of lowering TSI... The research/experiment paper summaries a somewhat confusing view (to me) that quote "The disappearance of TSI following the increased helper/inducer T cell level suggests that an anti-idiotypic reaction may have occurred, and the persistent decrease of the suppressor/cytotoxic T subset that CBZ therapy does not act upon the underlying autoimmune disease." I assume those patients in the experiment had only been treated with CBZ but nothing else GD-related. So if the CBZ therapy does NOT act upon the underlying autoimmune disease, how TSI was lowered after the therapy? (This is the first thought after a quick reading of the paper)

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