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L- carnitine for Graves

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mobadminton
mobadminton

I have read that L- carnitine, acetyl L -carnitine, Alph lipoic acid could be beneficial for patients with Graves.Does anyone have any knowledge of any of these being of benefit and if so ,which one(s).Patient also has psoriasis, coeliac and type1 diabetes! Thank you.

 

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  • cathy35794
    cathy35794 mobadminton

    Posted

    Don't have any info, but I recently started to take it for heart and BP benefits I heard of on the 700 Club a couple of years ago. Be interested if anyone has any info. I hadn't taken it back then cause the Doctor had me on Levothyroxine and I belief there was a problem, but I remember  there was some mention. I am now off Levothyroxine, sI felt it might be safe. 700 Club has some really good and reliable general health info for anyone, not just Christians

  • linda187
    linda187 mobadminton

    Posted

    I have had personal experience with L-Carnitine and Acetyl-L-Carnitine.  I never took Alpha Lipoic Acid, at least not when I had Graves so can't tell you much about that.  I credit the two carnitines with helping me get into remission and helping me to gradually lower my 10 mg dose of Methimazole.  I was diagnosed early in my disease when my Free T3 and Free T4 were not too much out of range (approximately 10 or 15 points higher) and was put on 10 mg of Methimazole.  This immediately brought the Free T3 and T4 down to mid range but my TSH remained at less than 0.001 for two years while I was on 10 mg of Methimazole.  Then I read a research article by an Italian endocrinologist, Dr. Salvatore Benvenga et al about the benefits of hyperthyroid patients taking 3,000 to 4,000 mg of L-Carnitine per day.  I tried 3,000 mg a day and my TSH rose to 0.12.  I got my Total Carnitine and Free Carntiine measured before I took it and they were deficient as I suspect most hyperthyroid patients are.  Then I added 1,000 mg of Acetyl-L-Carnitine and my TSH just shot right up to 0.70.  I couldn't get the Acetyl again for a year because of government regulations in my country but then it became available again and I took only 1,000 mg of Acetyl along with my Methimazole and it quickly raised my TSH to about 1.5 to 2.5.  My Frees fell to bottom of range but never out of range.  I did have some side effects on Acetyl though, more sensitivity to noise and sometimes palpitations.  Because it is so sensitive to this supplement, I had to get more frequent labs done and do a lot of adjusting of my use of it.  My doc adjusted my meds dose and I adjusted the supplements dose.  After I posted to Boards about my success with it, I saw a lot of patients went very hypo very quickly.  That is because you really need to have frequent labs and frequent adjustments.  This happens more so with Acetyl-L-Carnitine than Regular L-Carnitine because the Acetyl crosses the blood-brain barrier and takes anything with it that you take at the same time, i.e. Methimazole across the blood-brain barrier.  I also read that Vitamin D is very important for thyroid patients and was tested and found to be deficient in it and Magnesium was low so I added those two as well.  I currently take Methimazole 2.5 mg 3 or 4 times a week.  If my TSH falls lower than 0.70, I take Regular L-Carnitine 500 mg on the off days I don't take meds and 500 mg of Acetyl-L-Carnitine on the days I do takes meds.  So far so good.

    • mobadminton
      mobadminton linda187

      Posted

      Thank you very much Linda for your detailed response.I think we have a starting point. I was hoping to hear of more positive experiences from Graves sufferers with these supplements. In view of my sons 4 auto immune issues.I am trying to persuade him to look into LDN- to my mind he has nothing to lose in view of the only conventional treatment optios for Graves-none of which are terribly pleasant.Hoping the L- carnitine will at least improve things a bit for him.If it reduces the amount of meds. that he has to take , that would be a positive.Do you happen to know of anyone who has tried LDN.I was also try ing to get him to at least look into helminth therapy( aged 28 with 4 auto immune conditions, i would be having a look at everything) but that seems a step too far for him! Thank you again and any further info. that you think of, would be gratefully recieved.
    • linda187
      linda187 mobadminton

      Posted

      i did try LDN with a very bad response to it.  I became severely depressed.  LDN is a drug whereas carnitine is an amino acid that is normally found in your body. There are other natural supplements like Bugleweed, Motherwort and Melissa.  I think they help but if someone has a case of Graves with values that are very high out of range, I think that supplements alone might not be sufficient to get levels down.
    • linda187
      linda187 mobadminton

      Posted

      Yes it did lift when I stopped the LDN.   I had had a depressive illness many years prior and was treated with an old antidepressant drug called Tofranil which really improved my symptoms.  Most docs use or recommend the newer ones like Prozac, etc.  Unlike the newer antidepressants which affect the neurotransmitter, serotonin, Tofranil affects the neurotransmitter, norepinephrine. 
    • mobadminton
      mobadminton linda187

      Posted

      Thank you Linda.I think the L-carnitine is a good starting point and hope that it will have positive results for him.I am anti any form of pharmaceuticals but with his 4 autoimmune conditions, aged 28, I think theLDN is worth a try (if only he would)  to try and reduce his inflammatory response.I worry about the potential for even more autoimmune issues.Have you heard of many people having the same positive response to L- carnitine as you did?
    • madge1979
      madge1979 mobadminton

      Posted

      Youre right to worry about taking any form of drugs for you  OR your son ... Mobadminton

      Unfortunately along our paths we sometimes must use them to help our conditions  .. when we don’t know or are not advised by doctors what else to do ..

      When I was diagnosed with Graves’ disease I was told it was to be  RADIO ACTIVE IODINE  to destroy my Thyroid Gland or Surgery to destroy it also 

      But as I was told it was an autoimmune disease my first thought was that I should try to fix my immune system .. THAT is still the way I feel  today .. I have been Euthyroid ie .. normal now for around 12/18 months 🙏

      So I was put on Carbimazole to lower the Thyroid hormones that were coursing through me at 100 miles an hour .... making my life a misery and making me wish I could just lie down and  not get back up again ..... Carbimazole is a strong drug   But they keep a very close eye on you whilst taking it .. and you have bloods taken regularly to check white blood cells etc ..

      I was very lucky indeed and had no adverse effect from taking it .

      But when the Endocrinologist  decided that  I had had enough Carbimazole  and wanted  me to stop ......I wasn’t so sure ... and unknown to him  ( AND as it was MY BODY )  

      I decided to take  Regular L Carnitine   To  ‘ ‘come down ‘  from the  Carbimazole as I still felt HYPER 

      ... which I now know to be normal ... as there are still so many Thyroid Hormones in your System .. 

      Anyway , I took it every second day as I was overly nervous about taking it  ... but it did the job for me ....and my TSH  was exactly where it should be ... albeit the Endo thought he had achieved this alone ... 🙀

      So then ,    I had the job of trying to fix my Immune System .. and 

      I knew that around 80% if our Immune system is within our Gut.....  so  ..   THAT is where I started !!

      I was tested for various possible  vitamin deficiencies .. 

      And as people with Graves generally are .. I knew I was short of a few things ..

      My doctor scoffed at my idea .. 

      and so I did not include him in my research..

      I took

      Vitamin B12  ... ONLY  SUBLINGUAL 

      B1

      B6 

      Magnesium 

      Vitamin  D3    

      ( plus K2 mk   To direct the calcium to my bones and NOT  to soft tissue where it can cause Calcification  wink 

      Zinc and Copper

      vitamin C    HIGH DOSE

      Selenium   Vital for  Thyroid     function 

      ACIDOPHILLUS  

      40 BILLION/day  ( high dose )

      Please  Google each one of these 

        Like this ..  

      magnesium / Graves’ disease 

      .........To see how they all work in conjunction with the Thyroid and Immune System ..

      I believe ... and so do many others  .. that this works very well in keeping the immune system contented and at peace .....with all the vitamins and nutrients that are being put back into the body that     Illnesses like   Psoriasis , Arthritis , Crohns  etc etc etc 

      Have used up and depleted and caused deficiencies in ..

      If like me you and your son are desperate for a solution ..   you might like to consider this treatment ..  it worked well for me and keeps me in better health than I had before Graves’ disease .🦋

      I wish you both the very best ..

      Love M x🌹

    • mobadminton
      mobadminton madge1979

      Posted

      Thank you so much for your detailed reply Madge, I really appreciate it.I will copy and paste this to him and hope he takes note.I think he is ready to try the L- carnitine) butI think he is not ready for those options yet but i will keep this info. safe so I have it if the time comes when he is willing to be more proactive-I wish that time were now!
    • madge1979
      madge1979 mobadminton

      Posted

      There’s a certain element in us all , to ... wait and see .. ...

      as we don’t feel strong enough to make big decisions on our health or anything else when we are ill ..

      The time for your son to replace what has been taken from his body by his auto immune diseases ..

      is very probably ... NOW 

      But no doubt he is a busy man and is not really taking care of his body and is working hard to 

      Make a life 

      The vital thing to know though is without his Health back in sync .. 

      nothing is really possible in life 

      ( without his good health )  and that means ensuring his auto immune system is working  FOR HIM .....and  NOT AGAINST him .

      Try to persuade him gently that by trying these supplements 

      He will quickly begin to feel better   ...   and ask him to give them a try .. why not buy  them for him  ...so he has no excuses

      I bought all my supplements online at .. Amazon  where the prices are good and  next day delivery is assured in most .

      Bugleweed

      motherwort

      And lemon Balm  

      in tincture form,  mixed together in a bottle in equal proportions   Works extremely well for most people 

      They together, have a wonderfully calming effect on Graves’ disease HYPER feelings of anxiety .. and at bedtime help with sleep .. another thing most of us are deprived of !

      If your son takes the supplements daily .. and sees a beneficial effect .. he may have faith and continue .

      I do hope so .. as I know only too well how his condition must affect him

      My brother has 

      Arthritis , Crohns and I’m sure is at the beginning  of diabetes 

      He resisted my attempts at 

      Taking vitamins and minerals  

      But has been taking now for around a year .. and told me a few days ago he’s feeling much stronger and has less Crohns attacks 

        ( b12  Magnesium  and D3 ) 

      Good luck mobadminton and son 🦋

      Mx🌹

    • mobadminton
      mobadminton madge1979

      Posted

      Thank you madge. I think he is now cosidering L- carnitine ....so some progress.
  • madge1979
    madge1979 mobadminton

    Posted

    Linda ...  should be along soon .. she has great knowledge of

    L Carnitine and is always willing to advise on it ... and the best way to take it ...

    I’m sure you’ll be delighted to hear it all 

    Good luck

    Mx🌹

  • linda187
    linda187 mobadminton

    Posted

    Hi Mobadmin

    I was diagnosed with Graves disease in 2007.  Fortunately it was caught early and my values were no more than 10 or 15 points out of the top of the range for FT3 and FT4.  I was put on 10 mg of Methimazole and my Free T3 and T4 immediately fell to the middle of the range.  However, my TSH remained at less than 0.001 for two years.  Then i read a research article by an Italian endocrinologist about the benefits of hyperthyroid patients taking 3,000 to 4,000 mg of L-Carnitine per day.  So I asked my doc to test my Total Carnitine and Free Carnitine levels and found I was deficient in them.  I think most hyperthyroid patients are when they have been running hyper.  So I started in 3,000 mg of L-Carnitine (in the form of liquid because I did not want to take 6 capsules) and my TSH rose to 0.12.  I had no side effects from this but I decided to experiment with different carnitines and added 1,000 mg of Acetyl-L-carnitine to my Regular L-Carnitine and my TSH shot up to 0.70.  I couldn't obtain the Acetyl for a year and my TSH dropped to 0.12 again.  Then I was able to get it and I took 1,000 mg of Acetyl with 1,000 mg of Regular L-Carnitine and 7.5 mg of Methimazole and my TSH just shot right up very quickly between 1.5 and 2.5.  Especially while on Acetyl, (not so much with the Regular), I required more frequent testing as I needed to adjust dosages more frequently.  I also had side effects with the Acetyl of sensitive hearing and at times palpitations.  My Free T3 and T4 dropped to the bottom of the range, however, as long as it did not go out of range, I felt okay with that.  I did post my success story to many boards and  unfortunately others who tried Acetyl did not monitor closely enough and went very hypo very quickly so for anyone who wants to try it, I urge you to watch it closely.  It seems to work well for increasing TSH when taken with your Methimazole (or Carbimazole) dose at the same time.  My doc would lower my Methimazole dose as my TSH rose and I would adjust the Carnitine dosages.  Sometimes, I could only adjust to taking 500 mg of Acetyl every other day.  Currently i am on 2.5 mg of Methimazole 3 or 4 days a week.  My TSH dropped recently to 0.51 from 1.5 and I got it up again to 0.81 by taking 500 mg of Acetyl L-carnitine on the days I took the 2.5 mg and 500 mg of Regular L-Carnitine on the days I was off of meds.   I also found I was deficient in Vitamin D and this is extremely important to thyroid patients.  Was low in Magnesium too.  So I take 1,000 IU of Vitamin D3 in the form of gel caps and 200 mg of Magnesium as well.  I have never taken the Alpha Lipoic acid since I had Graves but have taken it before with no problems. 

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