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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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  • Sue1247
    Sue1247 linda187

    Posted

    Emma, I've decided to have the RAI as I've already had my Graves come back after going into remission. It was worse the second time. I'm now having difficulty stabilising. I have other issues that are being affected by getting the Graves under control again. I've just had some invasive surgery on my salivary gland and have a large scar on my neck.spread so I don't want another one from surgical removal. RAI is largely highly successful. There's a waiting list of six months to get it done where I live in the SE. They treat thousands each year. If you go hypo it's easier to treat as thyroxine doesn't have the side effects of carbimazole. Presuming my Graves goes into remission again I don't want to spend the rest of my life worrying about whether it will return. I've had both stress and infection cause mine and that's life. If you do decide to post a new thread be aware that most people post on patient Uk post as they are concerned about their health. So you may only by those and not the thousands of people satisfied with the RAI and thyroxine. I know of several. The choice is stabilise with carbimazole with all the side effects or with thyroxine with very few.
    • emmaj43
      emmaj43 Sue1247

      Posted

      Thanks Sue.  I also had a friend with graves and she had To have RAI twice but is fine now - just lives a very healthy and stress free as possible lifestyle.  X
  • Sue1247
    Sue1247 linda187

    Posted

    That's what I want Emma. Get it stabilised and forget it. Carbimazole is lowering my white cells. I wish I'd had the RAI a year ago when the graves first came back. I'd be over it by now.
  • psosebee
    psosebee linda187

    Posted

    I was diagnosed with Graves about 3 yrs ago. Had severe health issues & had RAI. Haven't felt well since. About a yr ago the eye thing started & blood test last month show elevated TSH & T4. My T3 is normal. My thyroid antibodies are high @ 52.

    I keep reading conflicting things about taking acetyl L-Carnitine for the eye issue since I am now slightly Hypo. If there is anyway to make the blurry vision & swelling go down in my eyes besides surgery then I am all for that.

    Is it bad to take if you are hypo?

    Thanks!

    Penny

    • linda187
      linda187 psosebee

      Posted

      You need to be very careful taking Acetyl-L-Carnitine even if you are hyper.  You could try a low dose of 500 or 250 mg. You are not hypo if your TSH and T4 are high.  You can take regular L-Carnitine with no concerns.  What is recommended for the eye problem is Selenium 200 mg or 2 brazil nuts a day and placing cotton pads soaked in Witch Hazel over closed eyelids can help.  Also important to have good vitamin D levels and Magnesium levels.
  • dianna_16026
    dianna_16026 linda187

    Posted

    Hello there... I'm more than happy I found this forum ! I have graves and I take Acetyl-L-Carnitine for a month now...My tsh level was 0.01 for more than 2 years.. Today result is tsh 0.35.. I'm also taking carbimazol 5mg. It's working ! Thank you Linda !

    • linda187
      linda187 dianna_16026

      Posted

      You are welcome Dianna.  However, I caution you to be very on top of your results and how you are feeling as Acetyl works very quickly and you can go from a TSH of 0 to 4.00 and then some very quickly.  So you have to have frequent blood draws and make frequent adjustments to both your meds and your supplements. In my case, I let my Endo adjust my meds dosage and I adjusted the supplements dosage.  I saw too many people on these Boards who went very HYPO very fast.  However, if you are like me with a TSH of essentially 0 for 2 years while on meds, you do want to get this normalized.  

      I have been on a dosage of meds of 2.5 mg 3 times a week and my TSH dropped from about 1.5 to 2.0 to 0.79.  While this is still in the normal range, I need to take my low dose meds more frequenlty to keep my level stable.  Recently I have had a lot of stress at work and this also contributed to my lab results.  So it is a very fine balancing act but most of the time I feel very well and I would be happy to do this the rest of my life compared to the alternatives of RAI or surgery.

  • fern12
    fern12 linda187

    Posted

    I'm losing track of time, but I think it was the summer of 2014 when I started taking Acetyl-L-Carnitine, and I have had my TSH in the normal range ever since.  I was already off the Methimazole I had been prescribed from 2009 to December 2012 [if I remember the dates correctly.]

    In all fairness, the ALC wasn't the only change I made in medications and supplements at the same time.  

    I was prescribed Wellbutrin, which immediately decreased all of the symptoms of hypothyroidism i felt under treatment with the MMI.  I suddenly felt energetic, with a normal response to temperatures [not feeling cold in a warm room anymore,] no more "Brain Fog" [being more alert and cognizant of my suroundings and of the feelings of other people,] etc.

    Along with reading about various symptoms of hypothyroidism and of low carnitine levels, I also read about symptoms of a Methylation defect, which at the time I read it, seemed to match the same symptoms.  I thought it meant I should supplement with Methyl B12 and Methylfolate, so I have been taking them ever since.  [I didn't realize until just now, reading about it again, that there is a danger of having over-methylation as well as under-methylation.]

    I miss some of these pills occcasionally, and I notice I have some slight negative consequences, so I suppose they must each be helping me somehow.

  • dianna_16026
    dianna_16026 linda187

    Posted

    Linda you are so lucky that you can work together with your specialist ! I'm not so lucky... in my case...my endo dosen't want me to take just the carbimazole...and from the start he wants me to have the radiation of my thyroid ! I usually feel ok so I want my thyroid alive. I'll do a blood test in one month again .Thanks again !

    • linda187
      linda187 dianna_16026

      Posted

      Well he wasn't always that way.  I had to teach him smile  I think he came around when my TSH finally came up and I showed him the bottle of Acetyl-L-Carnitine I was taking.  He also read medical research articles I gave him on L-carnitine and the thyroid.

    • fern12
      fern12 dianna_16026

      Posted

      You can simply refuse  radiation.  They can't force you to do it.  I'm glad I didn't.  I went to several endos and the only thing that convinced them of anything was that my numbers moved into the normal range.  I doubt they attribute any of it to the Carnitine.

    • linda187
      linda187 dianna_16026

      Posted

      I told my Endos from the get go that I would not consider Radiation or Surgery as treatment for my disease.  I also reiterated the unreversible symptoms I had heard from people who chose that path.  As long as they saw improvement in all my lab results, they had no reason to push the other treatmnents.
    • dianna_16026
      dianna_16026 linda187

      Posted

      Hi Linda ... I got my blood test result yesterday...my t3 and t4 are at the bottom line and my TSH is up to 1.84 from 0  in 4 months time . I take ALC 3 times a week and I take half of my carbimazole 5 mg tablet a day. I see my specialist in 2 days....
    • linda187
      linda187 dianna_16026

      Posted

      How are  you feeling now Dianna?  When you see your specialist would he be willing to test your antibodies?  You seem to be following my pattern in labs.  My TSH went up to 2.5 so I had to make further adjustments and finally discontinue Acetyl-L-Carnitine.  I am most comfortable with my TSH being at 1.5.  Your doc might tell you to stop your Carbimazole but I still haven't totally stopped mine.  I told my Endo, I was feeling okay on what I was on and was worried about a backlash if I stop it altogether and he was fine with that. I can tolerate taking Methimazole 2.5 mg 3 times a week and don't want to stop it altogether until I know I am no longer exposed to excessive workplace stress.  I am happy you took Acetyl cautiously 3 times a week.  As you lower this, your Free T3 and Free T4 will rise more towards the middle of range.  Would you be willing to take Acetyl only 2 times a week?

    • dianna_16026
      dianna_16026 linda187

      Posted

      Thanks for asking Linda ! I'm feeling well ....what about you ?  I'm sure my specialist will stop my treatment ! I'm thinking to try not to take my carbimazole  for a a month  and do a blood test than to see how I go....Also i'm not sure if I'll take ALC just 2 times a week cose I'm afraid of my tsh level not to go back too low again....with no treatment... I'm still thinking what option to choose...? Maybe I 'll start to take buglleweed tea to help a bit.... I hope my specialist will give me a test for antibodies. Cheers

    • linda187
      linda187 dianna_16026

      Posted

      If you continue on the dose of meds and Acetyl you are taking, your TSH will continue to climb and your FT3 and FT4 might just go below range.  This is why while Acetyl-L-Carnitine has been a Godsend for me to get my values normalized, it is also very very sensitive.  If you drop the meds and only take the Acetyl, your values are going to go back down.  I know from my own experience adjusting this.  Even when my values were around TSH of 2.25, I had to drop the Acetyl altogether and only took meds and my TSH went down gradually every month until it hit 0.70, then it started to rise again.  Don't know what made it do that but I am glad it did.  After it rose this way (while I was off of Acetyl-L-Carnitien) my TSH stayed stable around 1.00 to 1.5 until I had a stressor at work, whereupon it has dropped to around 0.89.  I know for myself even when my doc told me I could stop the meds, that something in me tells me not to.  I did lower the dose of 2.5 to three times a week from four times a week and then had a backlash of symptoms so I stay on it.  I have however, stopped the Acetyl and only take the Regular L-Carnitine on my off days of meds. I would be very careful coming off meds.  I have always let my Endo adjust the meds and even my staying on it, I discussed with him.  And I always deal with the supplement adjustments.  At this point, if I were you, I would drop one dose of Acetyl a week.  For the meds, it is important to know that your antibodies have normalized before you discontinue meds and when the time comes to discontinue, I have found that small changes keep you more stable than big ones.  So if you antibodies have normalized, and your doc thinks you can stop your meds, I would do this gradually by doing an every other day regimen of it before it is discontinued altogether.

    • dianna_16026
      dianna_16026 linda187

      Posted

      I've seen my specialist and he recomands to go with one tablet 5 mg a day...   I can't believe his decision ! I'm almost hypo with T3 and T4 and he wants me to continue with my treatment the same like before.He doesn't accept to take just half of the tablet...he never heard about that. Anyway I'm already on a half tablet a day and happy that I made that decision before I sow him...Thanks for your advice and I appreciate it . 

    • linda187
      linda187 dianna_16026

      Posted

      So your TSH is up to 1.84.  If you don't make an adjustment, it will continue to climb and very fast.  During my course my TSH rose from 0.12 all the way up to 2.75 but my FT3 and FT4 remained at the bottom of the range while my TSH ranged from 0 to 2.75.   It seems that as soon as you start taking Acetyl, it drops the other two values to the bottom.  However, should your TSH rise higher than 3.0 you run the risk of the other two dropping out of range.  You have to be very very careful with the Acetyl.  But you do need to make an adjustment to keep your TSH in the range of 1.0 to 2.0.  When I started on Acetyl, I was on 5 mg of Methimazole a day and my doc quickly adjusted my dose down to 2.5 mg a day.  Then when further adjustments were needed, I stopped the Acetyl and took 2.5 mg of Methimazole 4x a week.  While my TSH dropped, it did not do so rapidly and I felt fine.  As I said before, it dropped over 6 months (but still was within the normal range) and then shot up again, this time when I wasn't taking Acetyl.  It's a real balancing act to keep TSH at around 1.0 to 1.5.  If I were you, I would continue on 2.5 mg but drop the one dose of Acetyl a week.  I actually felt better when my TSH was fine and I wasn't taking Acetyl anymore.

    • dianna_16026
      dianna_16026 linda187

      Posted

      Thank you Linda ! I'm going to take your advice and I'll do my blood test in a month to see how I go. Sounds ok to me...and I'm sure you had lots of experiences in the past .

       

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