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Improvement in Graves Disease recovery by using L-Carnitine?

Posted , 18 users are following.

linda187
linda187

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.

1 like, 93 replies

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  • fern12
    fern12 linda187

    Posted

    Hi Linda,

    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
      linda187 fern12

      Posted

      Wow Fern. I wasn't familiar with how it would work for Hashi's. You do have Hashimoto's do you not? You seem to have done quite well in managing your symptoms. You could also take regular L-Carnitine and it won't cause as much fluctuation in your Thyroid lab results. However, you seem to be managing quite well. Thanks for keeping me posted.
    • fern12
      fern12 linda187

      Posted

      Yes I have both the Graves and the Hashi's antibodies.  I know the carnitine is not recommended for hypothyroidism, probably because it causes the TSH to rise (defining "worse" hypothyroidism.)  I have never been measured with a very high TSH, certainly not while off the MMI.  Once on MMI, I think it got to 5 point something. and otherwise it was never measured above 3.0.  In my case the hypo has been more in symptoms than blood tests.  In fact, when my TSH drops I feel hypo until my FT3 rises above the upper limit.

      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
      linda187 fern12

      Posted

      There was an article recently by Dr. Christopher Sinclair of Brown's University. He did a study and found that hyperthyroid patients were carnitine deficient but so were hypothyroid patients, though not as much.
    • fern12
      fern12 linda187

      Posted

      Yes.  I know that there is the condition where the Hyperthyroidism decreases the levels of Carnitine, and causes the problem with that route.  Most hypothyroid patients, because they are defined by the TSH level, would have enough carnitine if it is what helps the TSH to increase.
  • Nikki629
    Nikki629 linda187

    Posted

    Linda, You are a wealth of knowledge!! Thank you for helping us!!  
  • hope4cure
    hope4cure linda187

    Posted

    How long did u take the supplement before improvement?
    • linda187
      linda187 hope4cure

      Posted

      With the Acetyl-L-Carnitine improved within 2 weeks. Withe the regular L-Carnitine about 4 to 6 weeks.
    • hope4cure
      hope4cure linda187

      Posted

      I have been taking it for several weeks and really don't feel any different. Hoe do u know if it really replaces the hormone levels needed?
    • gurm
      gurm hope4cure

      Posted

      Hi - I was diagnosed with an overactive thyroid about three weeks ago (my T4 was around 65 and TSH at 0.05). I was put on 60mg (3x20mg per day) carbrimazole and also started taking a 500mg of Acetyl-L-Carnitine with each carbrimazole tablet after reading linda187's posts on this forum (1500mg of Acetyl-L-Carnitine per day total). I noticed an improvement after about 10 or days. I'd lost about 6kg in weight in about four weeks prior to being diagnosed and I'm back to regular exercise and feel my muscle strength has got better over the last week or so. I have a blood test on Monday so will have a better idea of how my thryoid is functioning and can then adjust the Acetyl-L-Carnitine as needed.
    • linda187
      linda187 hope4cure

      Posted

      You will mostly know by the change in your lab work results. If your values were really out of range to begin with like a T4 of 60 and a TSH of less than 0.01, you would probably be having muscle problems and those begin to feel better once carnitine is replaced. If your values weren't out of place much at diagnosis like myself with a T4 of 29, you may not feel the difference physically but you will see a difference in improvement of your blood work. Also the regular L-Carnitine will not change lab work results very quickly as much as the Acetyl will so therefore you can take a higher dosage of Regular L-Carnitine and a lower dosage of Acetyl like 500 mg Acetyl. I started at 1,000 mg of Acetyl but quickly reduced it to 500 mg when my TSH improved so much so fast.
    • linda187
      linda187 gurm

      Posted

      Thanks so much for keeping us posted on your progress. You will need to adjust your Acetyl very quickly when your TSH rises to over 1.0 to 2.0 and your T3 and T4 drop down close to the bottom of the normal range so keep on top of that. I know my GP said he would not do a blood test more than every 6 weeks but my results were really affected so quickly with the Acetyl-L-Carnitine compared with the Regular L-Carnitine though I have taken both of them.
    • gurm
      gurm linda187

      Posted

      I'll post my blood test results when I get them next week - it'll be interesting to see what they are after four weeks. I must say that even though I'm back to exercising, some of the underlying symptoms are still there, albeit in reduced form - the main ones being tremor in my hands, palpitations (especially after eating in the evening) and bouts of feeling of really hot (but with less sweating) - hopefully these will gradually reduce further. I've also noticed gradual occurences of fatigue when I can do nothing but yawn and start falling asleep (usually around mid-morning).
    • linda187
      linda187 gurm

      Posted

      Thanks for posting. Your T4 value was quite high so it will take a bit of time for all of your symptoms to disappear. But you are noticing improvement and that's a good sign, especially with a value that high. If you are not already doing so, you might want to add Vitamin D to your regimen because hyperthyroid patients are deficient in carnitine but also in Vitamin D. The fact that you are seeing improvement albeit not 100% yet is a very good sign. Many people with your values on a high dose of Carbimazole alone have not noted any improvement in their symptoms whatsoever even after a long period of time. Thanks again for the update.
    • hope4cure
      hope4cure linda187

      Posted

      Hi Linda..

      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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