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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

93 Replies

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  • fern12
    fern12 linda187

    Posted

    Earlier, I said I was taking 2000 mg Acetyl-l-carnitine daily, but I made a mistake.  I realized I am only taking 1000, because I am taking 500 mg twice daily.
    • linda187
      linda187 fern12

      Posted

      That's good Fern. I don't have a problem with taking a higher dose of Regular L-Carnitine but I would not take more than 1,000 mg of Acetyl-L-Carnitne and as it begins to work, I would not take more than 500 mg of it because it affects your blood work so dramatically by increasing the TSH and lowering T3 and T4 so rapidly when it is taken with methimazole.

    • fern12
      fern12 linda187

      Posted

      So far, so good.  My last blood work came out nicely in range and I felt good. I'm not on any prescription except the Wellbutrin. Thanks for your input about it.
  • Sue1247
    Sue1247 linda187

    Posted

    Hi Linda. There was a programme on BBC last night about the effects of eating meat. They no longer think it's unsaturated fat but the carnitine in red meat that is causing furred up arteries Have you heard this theory?
    • emmaj43
      emmaj43 Sue1247

      Posted

      Hi Sue, I was also going to mention that as it also said it increased cholesterol levels.  My Endo does take it himself though so I can't imagine on it's own it has the same impact.
  • Sue1247
    Sue1247 linda187

    Posted

    I understand that graves patients have a naturally low cholesterol level. Mine is 3.6 but I don't want it to rise to much or put myself at risk. If this is new,research then perhaps your endo hasn't heard of it himself. I can't help being a little concerned.
    • linda187
      linda187 Sue1247

      Posted

      I hadn't heard about that research on Carnitine. I do know that high doses of vitamin C and Lysine unclogs arteries (research from Linus Pauling). I am wondering whether the report on Carnitine was started by Big Pharma as they have been trying to block research on L-Carnitine as they stand to lose a lot of money if it gets promoted as a treatment for Graves. I think it all comes down to balance. Carnitine is an amino acid that is naturally found in muscles of the body and Graves patients are deficient in it so replacing it makes sense and people would not report feeling better on it if that were not the case.
  • linda187
    linda187

    Posted

    Just Googled L-Carnitine and cholesterol and came up with this paper "Influence of L-carnitine supplementation on serum lipid profile in hemodialysis patients: a systematic review and meta-analysis." It kind of states the opposite of what you reported on the radio or TV program - that L-carnitine lowers LDH cholesterol. My former gynecologist takes high doses of vitamin C after he had heart surgery as he refused to take statins and he is now 90, alive and well and still giving talks on the subject.

  • linda187
    linda187

    Posted

    Here is another study refuting that L-carnitine raised cholesterol levels. It states that it is the saturated fat in red meat that raises cholesterol levels, not the carntine. Google this title "Carnitine Study: A Response, April 2013".
  • linda187
    linda187

    Posted

    I urge you all to Google "Controversy about L-carnitine being unsafe to take as a supplement" and read many reports that contradict that L-Carnitine causes heart disease. In fact, some reports state the opposite - that L-Carnitine helps patients with heart disease.

    • gurm
      gurm linda187

      Posted

      From what I've read, there is enough research on the safety of carnitine as a supplement - especially the dosage level we discuss on this forum. Bodybuilders and other athletes regularly use it at doses of 2000 mg/day without any injury to their health. There was a TV programme on last night that made mention of carnitine as a culprit in heart disease, but the TV programme made no mention of the large amount of research against this view. I'll be carrying on with my 500mg/day as I've found no evidence to suggest stopping taking it.
  • Sue1247
    Sue1247 linda187

    Posted

    I agree there is nothing on the Harvard link that says L-cartinine is bad but they do say think three times before taking it.  I know lots of people have benefitted by  it but I personally feel exactly the same.  I'm having problems with carbimazole and have a low white cell count so I've put my name down for RAI.  I said I'd never have it but it seems the risks are less than taking carbimazole for an indefinite period.  I have other auto immune issues that have made me come to the decision so please don't let my views affect anyone else who has posted here  As for the L-cartinine - I'll finish what I have and stop.

     

    • emmaj43
      emmaj43 Sue1247

      Posted

      Hi Sue

      I am trying so work out whether to have surgery or RAI. Just wondered how you have come to your decision - I am currently swayed to surgery purely as RAI sometimes doesn't work or takes a while to stabilise and you can't go near children. If I had surgery I would be stable straight away and on thyroxine and problem would be solved.  However I am scared of surgery and don't like the idea of losing this gland and relying on medication.  I am very indecisive at the best of times.   Ideally I would like to have neither but I have been told I was so high first time round it will come back. 

      Thanks Emma

    • linda187
      linda187 Sue1247

      Posted

      I would post another thread and ask people who have had RAI or surgery or both how they feel now and see how many are satisfied with that. When you have gathered all the information, then check in with that small still voice inside of you and ask yourself what is the right decision for you.

      Before I took Carnitine, I asked my boss, who is a Genetic Metabolic physician and who uses Carnitine to treat some diseases his patients have about it and he told me it would not hurt me. Secondly, I got my Carnitine level measured before I took it as a supplement and I was deficient. I got it measured after I started on Carntine and I am still in the normal range. Carnitine is an amino acid that occurs naturally in the body so if it is deficient, I would imagine your body doesn't work well. I would also suggest anyone who wants to take it should get their levels checked before they start on it. I want mine to be within the normal range and they are.

    • hope4cure
      hope4cure linda187

      Posted

      I have been taking it for years. Can't tell if it's helping .. I take many supplements that my doc has ok'd for my health issues. May interact with certain health issues and drugs. Always check with UR doc he knows UR health history. biggrin
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