Improvement in Graves Disease recovery by using L-Carnitine?

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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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  • Posted

    Hi Linda,

       

         Than you so much for posting. Just curious but how long did it tae you to start feeling better after you started taking the L-Carnitine and the Acetyl-L-Carnitine. I am on Methimazole (2.5mg) and have been since 2010 but the doctor says that I am not at the level he wants me to be at yet. I am also on 10,000mg Vitamin D. My initial symptoms of the Graves was elevated blood pressure (the top number/bottom number was normal), swelling in one of my ankles (left), rapid heartbeat, and anxiety. I am so glad that you feel better.

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    • Posted

      I started on one 500 mg pill of L-Carnitine and my TSH rose from less than 0.01 to .05. I began to feel better right away but played around with doses up to 3,000 mg. Then I took 2,000 mg of regular L-Carnitine and 1,000 mg of Acetyl-L-Carnitine. My TSH rose to 0.78. I could then start reducing my methimazole. However, the Canadian government banned Acetyl-L-Carnitine from being sold in Health Food Stores for one year so I just stayed on the regular L-Carnitine and still felt pretty good taking an average dose of 5 mg of Methimazole. After one year, the ghovernment again allowed Acetyl-L-Carnitine to be sold in Health food stores as long as it was behind the counter. My TSH rose varying from 1.4 to 2.4 and I felt soooooo much better then and my eyes improved a lot. I am now not wanting my TSH to keep rising and my T3 and T4 though in the normal range were at the low end of it. Also, witth my levels at these low ranges, I experienced a little bit of a rapid heartbeat while on the Acetyl but not the regular so I went back to the Regular Carnitine. The answer to how long is very quickly with the Acetyl but not as quickly with the Regular.
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    • Posted

      I felt better with my first dose of regular L-Carnitine after about 2 weeks when my TSH rose to 0.05. However, I felt really a LOT better when I took 500 to 1,000 mg of Acetyl-L-Carnitine and my TSH rose to 1.4 and then 2.4. That's when my eye symptoms really improved.
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  • Posted

    Thanks for the info Linda. I think I am going to try it and see if it will help me. The Methimazole makes my joints hurt. Does it bother yours? What were your initial symptoms of the Graves?
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    • Posted

      My joints hurt because I have arthritis but I take Arthrotec for that and it seems to control the pain. Also I try to avoid sugar and Aspartame. Aspartame which is an artificial sweetener in soft drinks, really aggravates Graves symptoms. My symptoms were rapid resting heartbeat, heat intolerance, eye irritation with redness and irritation and constant need for eye drops until my ophthalmologist inserted plugs into my tear ducts. I also was tired and restless with hyperactivity.
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    • Posted

      I agree hat helps my arthritis so much.. Antiinflams r the most helpful removing swelling removes a lot of pain .. But the damage to the joints still goes on.
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  • Posted

    Thanks for posting that Linda, I would also like to know.  I am going to trial it and see how I go. If it also helps my tired, red and stinging eyes that would be brilliant. I always know I have overdone it when they start hurting.
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    • Posted

      My ophthalmologist inserted collagen plugs in my tear ducts to stop the dryness. She does this in a few minutes in her office and it does not hurt. I was given the choice of collagen plugs which last 3 to 6 months and need to be replaced or silicone ones which do not have to be replaced. I did not like the idea of silicone ones because of all the bad press about silicone breast implants. I felt collagen was a more natural substance so opted for that. Helps a lot with the eye irritation. I might still use eyedrops but certainly not as much or as often as I had to before the plugs.
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  • Posted

    Hi Linda, I've the same eye issues as you did and about to see a specialist.  I also have weakened eye muscles and heartbeat issues.  But no pain at all.  I like being active but am sometimes bouncing off the walls.  My meds have got in a mess due to other auto immune issues. Sjogrens, lupus.  I'm about to try LDN (low dose naltrexone), if I can . Is anyone else on this?  I'll discuss the L carnitine with my consultant this week. 
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    • Posted

      Hi Sue. Don't be surprised if your consultant knows nothing about it or won't endorse the L-Carnitine. You need to do your own research on this and then make a decision. Dr. Salvatore Benvenga from Italy is the first report I read on this topic. You can Google him and the topic and see what you find. I tried the low dose Naltrexone but it made me feel severely depressed so I stopped it immediately. What are you treated with for the Sjogrens and lupus? Eye tear duct plugs might help your Sjogrens a lot. I tolerate the regular L-Carnitine really well. The Acetyl-L-Carnitine has had the most dramatic effect on my thyroid lab results. Initially I tolerated it well but now that my results are well into the normal range, I do feel my heartbeat is more rapid on the Acetyl so I have gone back to the regular L-Carnitine and have had blood work done for Carnitine levels that shows I am in the middle of the range.
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  • Posted

    Thanks for getting back to me with your comments Linda.  To be honest, apart from a very bad flare up of Graves last year when I contracted sepsis I respond very well to carbimazole and can control it.  However I'm always open to thoughts and new treatments that will improve my general health.  I'm going through a phase where everything is going wrong and have kidney stones and stones in my salivary glands that are very inflamed.  So it's the Sjogrens that is causing me a lot of problems with dry eyes and wrinkled corneas plus the dry mouth. The first attack of Graves left me with weakened eye muscles and reduced peripheral vision.    I'm fortunate that I don't get joint pain as some do in fact I've always considered myself fit. y Lupus is mild and apart from an occasional rash or a day where I feel very tired I'm not that bothered about it.  I tried Plaquenil as suggested by my consultant and  that made me have non-stop colds and I felt no different so I stopped that.  I'm not a fan of any medication and prefer the natural route but things have just got too bad.  I've just had an operation to remove my submandibular salivary gland as it had just shrivelled due to the stones and an infection.  Now I have stones trapped under my tongue that are very painful and I am waiting for treatment for them.  There is no way I can have RAI and I certainly don't want the thyroid removed as I already have an enormous scar on my neck from the gland removal.  I take serveral vitamin and herbal remedies that have held me stable over the years but it has all got a lot worse since I stopped HRT.  I even had inflammation in my fallopian tubes of 16cm and had to have my ovaries removed.  Going back on HRT is not an option as the only ones that suit me are those that give me a period and at my age it's unacceptable. I've been referred to an eye specialist and hope to get the plugs.  I can't see an end to it at the moment.

    I'm anxious to try the LDN as it could work for all my auto immune issues.   I have an excellent facts sheet about LDN and depression is not on the list so you were very unlucky there. 

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    • Posted

      Yes, I had read promising things about Naltrexone but I had a severe depressive episode in my youth and it probably left me more susceptible to it, especially on this drug so I could not continue on it. While carbimazole or in my case Methimazole, stopped the cardiac symptoms of Graves and normalized my T3 and T4, my TSH just would not get on the map and my eyes were so dry, I was tested for Sjogren's but did not have it. When I took the L-Carnitine, my symptoms greatly improved and I felt more normal. I documented through blood tests that I was deficient in Carnitine before I took the L-carnitine supplement. Also documented Vitamin D deficiency. Taking the Carnitine restores something that is missing in the body, particular missing from muscles, and that is what makes us feel better. On myself and others on this Board, it worked better than Carbimazole although we did not abruptly stop it. We decreased it as our symptoms improved and our thyroid tests improved. I am menopausal so I take bioidentical hormones that I get from a compounding pharmacy. While I do not take a high dose and therefore do not have periods, I feel better on even a small dose of the natural hormones.
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  • Posted

    HI LINDA I HAVE BEEN TAKING ACETYL-L-CARNITINE AND FEEL SO MUCH FITTER BUT DONT KNOW HOW MUCH VITAMIN D TO TAKE  THANKS
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    • Posted

      Hi Patricia.  I would take a minimum of 1,000 mg and a maximum of 5,000 mg.  I got 5,000 mg Gelcaps and took them but usually I come across 1,000 mg Gelcaps and mostly take one a day of those.  As long as you are supplementing, I think a minimum of 1,000 mg will raise your Vitamin D level into the normal range.
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    • Posted

      Patricia - Glad you are feeling so much fitter.  Please keep on top of your blood work and ask your doctor for a copy of your results when they are next done.  Depending on what they are, you may need to adjust medication.  I and many others found I could decrease my Methimazole dosage once I started on the Acetyl-L-carnitine but I always did this with my physician's agreement and approval.
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