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When I first posted to this Board, I shared my story about the vast improvement in recovery from my Graves disease when I added first regular L-Carnitine and then Acetyl-L-Carnitine (which I obtained from a Health Food Store as well as by prescription) to my treatment regimen.as well as Vitamin D. Before I added this, I got blood levels checked and I was deficient in both Carnitine and Vitamin D. I believe all Graves patients are deficient in these two indices. My disease was caught early and I was put on 10 mg of Methimazole (similar to Carbimazole in England). This immediately normalized my T4 and T3 but did not budge my TSH which remained at less than 0.01 for 2 years until I then added the Carntine. The acetyl-L-carnitine raised my TSH the most, well into the normal range. It also got rid of my eye irritation and I was told I no longer have Graves antibodies. I was also able to decrease my Methimazole, now down to 2.5 mg. I would really like to follow up with those of you who have tried this and had success with it. I'd also like to hear from people who feel it didn't help them.
Thanks.
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fern12 linda187
Posted
I have been off Methimazole (MMI) for about a year and a half. I believe the thing that helped me get the TSH up back then was to skip doses of my MMI or reduce them once or twice a week. I believe the autoimmune factor of the Graves' Disease has a greater hold when you are not feeling well and relaxes its grip when you feel better, just like how the immune system responds to illnesses. I am probably the only one that thinks this.
After I quit the MMI in December 2012, I began having an increase in hypo thyroid symptoms, but my TSH was in range, my FT4 was in the middle of the range, and FT3 was only slightly below range and sometimes a little into the range again, so my Endo (#2) would not prescribe a supplement.
I went to a different Endo (#3) and she saw I was in range also and would not prescribe anything either, testing my Total T3 instead of the free kind. It was also low but in range and my TSH was borderline low (borderline hyperthyroid) with my FT4 about the same as it was before.
Endo #2 wouldn't take me back as his patient because I went to #3 for a second opinion and #3 was out of state, an 8 hour drive away, so my primary care physician (PCP) let me see him about my thyroid needs. When I showed him my most recent lab results, he agreed with me that I should have supplementation and gave me a choice of Levothyroxine (LT4), Liothyronine aka Cytomel (LT3), a combination of both, or Armour Thyroid (dessicated pig thyroid.)
I wanted the LT3 because I was particularly low in T3 and because I had read that the LT3 is fast acting and fast leaving the system. I reasoned that if I were walking a tightrope between the hypo and the hyper, I could do it more easily with that type of an approach. I was on the LT3 for about 4 months with tests every 2 months that showed my TSH rising and my FT4 and FT3 not falling, and with me feeling very much better. [I had actually tried 2.5 mcg (a half tablet) the first time and it just about blew me out of the water--I felt great but didn't think I could keep it up, so I cut the pill in quarters then figured out how to cut the small fat pill into eighths by turning a quarter on its side and slicing it that way into half again.] Anyway, I built up the dose from there. In the next two months the doctor added the smallest dose of LT4 and I still increased the LT3. At the next blood test my TSH had dropped to below 0.01 and I had to see Endo #4. I have been seeing him since January this year. I had to go off the thyroid supplements and I had to get clearance from him that it was ok to take the Carnetine. "I don't think it will help, but it won't hurt" was good enough for me to consider it a green light. I didn't feel much better right away but I think it eased the problems associated with going off the LT3. Still, I was feeling very low when I was off the thyroid supplements. My TSH was back in range as were my FT4 and TT3, so my Endo said "How you feel is not due to the thyroid because the levels are in range."
I went back to my PCP and he prescribed Wellbutrin. It was just the ticket, seeming to fix the problems I had associated with low T3, but not messing up my thyroid labs. I kept taking the Acetyl-L-Carnetine, though, and added methyl B12 and methyl folate because I suspect I also have trouble with my methyl cycles, although I may just be a carrier for the genetic defect like I probably am with Primary Carnetine Deficiency.
I was also on a monthly prescription for vitamin D, but Endo #4 said I should stop taking it. I did, and haven't missed it. If I don't take the Acetyl-L-Carnitine, I do miss it, however. I take 2000 mg per day.
Fern
linda187 fern12
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fern12 linda187
Posted
The way I see it, my genetic make up causes me to have a lower than normal Carnitine level, which causes me to have a lower than normal TSH, which makes doctors think I'm hyperthyroid when it's not the thyroid hormones making my TSH so low. When I am hypothyroid they miss seeing it because my TSH is in the normal range. [Just my own opinion.]
I haven't commented much on the forums lately because I found that even thinking about the Thyroid makes me physically sick. It's like I have a terrible stress response, or did for the last few months, but may be getting a little better now.
linda187 fern12
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fern12 linda187
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Nikki629 linda187
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hope4cure linda187
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linda187 hope4cure
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hope4cure linda187
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gurm hope4cure
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linda187 hope4cure
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linda187 gurm
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gurm linda187
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linda187 gurm
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hope4cure linda187
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thankx so much..it's still at the level where it's confusing . I will contine with the supplement and ck for blood level improvements.
CHEERS
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