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L-carnitine and Grave's

Posted , 26 users are following.

Ad_Astra
Ad_Astra

Hello all,

I am new to this forum. I was recently diagnosed with Grave's (TSH < 0.01, ft3 12.5 and ft4 33.1). i will be starting my medication 20 mg of carbamizole tomorrow.

i have been lurking and reading some of your posts and learned that l-carnitine could be a useful supplement.

what i am wondering is, do i take it while i am on the carbimazole medication or would you rather you use it when you are off the medication, trying to stabilize the thyroid?

(i hope my english is ok, i live elsewhere, but could not find an internet support group in my homeland).

0.01,="" ft3="" 12.5="" and="" ft4="" 33.1).="" i="" will="" be="" starting="" my="" medication="" 20="" mg="" of="" carbamizole="" tomorrow.="" i="" have="" been="" lurking="" and="" reading="" some="" of="" your="" posts="" and="" learned="" that="" l-carnitine="" could="" be="" a="" useful="" supplement.="" what="" i="" am="" wondering="" is,="" do="" i="" take="" it="" while="" i="" am="" on="" the="" carbimazole="" medication="" or="" would="" you="" rather="" you="" use="" it="" when="" you="" are="" off="" the="" medication,="" trying="" to="" stabilize="" the="" thyroid?="" (i="" hope="" my="" english="" is="" ok,="" i="" live="" elsewhere,="" but="" could="" not="" find="" an="" internet="" support="" group="" in="" my="" homeland).="">

i have been lurking and reading some of your posts and learned that l-carnitine could be a useful supplement.

what i am wondering is, do i take it while i am on the carbimazole medication or would you rather you use it when you are off the medication, trying to stabilize the thyroid?

(i hope my english is ok, i live elsewhere, but could not find an internet support group in my homeland).

>

1 like, 85 replies

85 Replies

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  • Screwball21
    Screwball21

    Posted

    Hi Ad Astra

    You are likely to be on carbimazole for several months, if not years, so yes perhaps you should give the L-Carnitine a go in a couple of months' time once you see how you get on with the carbimazole. Good luck with your treatment though.

  • linda187
    linda187

    Posted

    I also found that after I added the acetyl-L-carnitine that I no longer had antibodies. I think if you take it along with the Carbimazole that you will find if you are being followed with regular blood tests, that your TSH will rise and you will need a lower dose of Carbimazole.
    • claire14159
      claire14159 linda187

      Posted

      Hallo Linda,

      You say that with acetyl-L-carnitine you no longer had antibodies- which is what I am after; to stop the antibodies. However I am going on L-carnitine (discussed elsewhere) first. Silly question: dare I hope the L-carnitine version will stop antibodies, or is it only the acetyl version? I hope to take bugleweed against the antibodies also. What is your take on this idea?

      Many thanks to you, always so willing to share your fund of experience and knowledge, I appreciate it no end. x Claire

    • linda187
      linda187 claire14159

      Posted

      I have never taken Bugleweed but I heard others have and had great results with it.  They took it instead of meds.  I think once I added back the missing amino acids and vitamins and kept my levels normalized that my antibodies left.  I did the Regular first before trying the Acetyl.  The difference between the two is that Regular has a lot of Carnitine and a little bit of Acetyl.  The Acetyl has a lot of acetyl and a little bit of carnitine.  It is the Acetyl that crosses the blood-brain barrier and gets the meds, vitamins etc into the cells.  Try the Regular first at a dose of up to 3,000 to 4,000 mg.  Your TSH should rise some.  Keep in touch with how you feel.  If your TSH is still low, then take no more than 500 mg of Acetyl and get frequent blood tests and get your doc to adjust your meds dose as your TSH rises.  Also pay attention to how you are feeling.  At the end, I could not take Acetyl anymore because it caused loud noises in my ears and palpitations.  But that's okay, it did its job.  Although my antibodies were not detectable, I had a slight relapse recently while I was on 2.5 mg of Methimazole 3 days a week.  The trigger again was stress in the workplace with an abusive coworker.  That's okay though.  My TSH dropped but was still in the normal range.  I upped my dose to 2.5 mg 4 times a week.  Feeling okay symptom wise.

  • Ad_Astra
    Ad_Astra

    Posted

    Thank you both for your replies.

    I could not find the acetyl-L-carnitine anywhere, but I bought L-carnitine and have been taking 1000mg/day.

    Additionally I take 4000 IU vitamin D3 (I was already doing that when I was diagnosed, since I was very low in VitD last spring). And also Udi's choice Omega 3, 6 and 9. I used to take fish-oil but since it is from ocean fish I don't dare to take it anymore if it might contain a lot of iodene.

    I find no discomfort from the carbimazole and I am now on a higher dose, taking 40 mg/day of the Carbimazole.

    My last results were (TSH < 0.01, ft3 10.0 and ft4 28.0). 0.01,="" ft3="" 10.0="" and="" ft4="">

    • linda187
      linda187 Ad_Astra

      Posted

      The Acetyl-L-carnitine should help lower your labs a lot and very quickly.  You can order it online if you cannot find it locally.  Do not take more than 1,000 mg of it daily though and pay attention to how you feel on it. Start on 500 mg and see how you feel.  Let your doc know you are taking this because you have talked to several thyroid patients who said it helped lower their Frees and raise their TSH.  He should know what you are on and the fact that it is helping you.
  • linda187
    linda187

    Posted

    For myself, I found the regular L-carnitine raised my TSH from less than 0.01 to 0.05. But when I added acetyl-L-Carnitine my TSH rose to 0.78 in the normal range. I always take it with my prescribed medication. I also take vitamin D3. I take Omega 3 but not Omega 6 or 9.

    Perhaps you could order acetyl-L-carnitine online or ask your health food store if they could order it?

  • acoffin
    acoffin

    Posted

    Hi all, I hope you can help me...

    My 18 year old daughter was diagnosed with Graves in 2010. She has been on Tapazole and was near remission until recently. She has gained a lot of weight while on Tapzole and is very reluntant to increase her dosage. Her numbers are TSH <0.01 (0.53-4.6) ft4 24.4 (10.5-20.0) ft3 10.0 (3.5-6.5) she was asked to increase her dosage again and my naturopath put us on a regimen that is like linda's and is waiting for bugleweed tincture to be made. my questions are: how long will it take to see the difference that acetyl-l-carnitine can make (just started yesterday)? will all her numbers change for the better? how much acetyl l carnitine to take to start? does tapazole make you gain weight because of it's side effect or due to leveling off the thyroid? thanks in advance! (0.53-4.6)="" ft4="" 24.4="" (10.5-20.0)="" ft3="" 10.0="" (3.5-6.5)="" she="" was="" asked="" to="" increase="" her="" dosage="" again="" and="" my="" naturopath="" put="" us="" on="" a="" regimen="" that="" is="" like="" linda's="" and="" is="" waiting="" for="" bugleweed="" tincture="" to="" be="" made.="" my="" questions="" are:="" how="" long="" will="" it="" take="" to="" see="" the="" difference="" that="" acetyl-l-carnitine="" can="" make="" (just="" started="" yesterday)?="" will="" all="" her="" numbers="" change="" for="" the="" better?="" how="" much="" acetyl="" l="" carnitine="" to="" take="" to="" start?="" does="" tapazole="" make="" you="" gain="" weight="" because="" of="" it's="" side="" effect="" or="" due="" to="" leveling="" off="" the="" thyroid?="" thanks="" in="">

  • linda187
    linda187

    Posted

    For me the Acetyl-L-carnitine worked very very quickly. I got measured 2 weeks after starting it and I was taking 1,000 mg a day along with 5 mg of Tapazole. My TSH went from 0.12 to 1.41 and T3 and T4 remained in the low to middle of the normal range.. I was concerned that if I continued on the same dose that TSH would continue to rise too much so I played around with dosages, discontinuing it and seeing what happened. TSH fell to .80. Then I tried stopping the Tapazole on alternate days and it fell to 0.50, so I then took 500 mg Acetyl-L-carnitine and 5 mg Tapazole daily and my TSH went up to 2.4. Right now, I am comfortable taking 250 mg of the carnitine along with the daily 5 mg of Tapazole.

    I never was on a high dose of Tapazole because my disease was caught very early when my values were not too much out of range aside from the less than 0.01 TSH. Therefore I don't know how a higher dose would affect weight gain but seeing as the drug is meant to cut excessive thyroid hormone, it would make sense that taking a higher dose would cause this. Also, because I was over 60 at diagnosis, the weight loss thing did not happen to me when I was hyperthyroid so I think in younger people the weight loss/gain thing works differently.

    I think with a steady dose of 500 to 1,000 mg of L-Carnitine per day and whatever dose of Tapazole she is on, you will see a big difference in results in about 2 weeks. You then can adjust the Tapazole and the Carnitine lower if her results are in the normal range. Some people get bouts of hyperacidity on too high a dose of the L-carnitine in which case I would lower the dose. Once your values get into the normal range, then even a low dose like 100 to 250 mg of acetyl-L-carnitine will keep it up there.

    It would be helpful if she could practice stress relief techniques like mindfulness etc.

  • acoffin
    acoffin

    Posted

    Thank you so much Linda! We'll give it a go and hope for the best. She is currently seeing a counselor and is going to yoga classes... Thanks again!
  • linda187
    linda187

    Posted

    That's great that she is practicing yoga and getting support. Keep us posted on how she is doing.

    I would love to hear from anyone else that tries the acetyl-L-carnitine and gets results similar to mine. Surely I don't feel that it would affect me differently than any others with this disease but I would love to hear others having the same results.

    • Karmaway
      Karmaway linda187

      Posted

      I've been reading this thanks Linda, struggling to get my TSH up so going to give this Acetyl L Carnitine a try ! 👌

  • fern12
    fern12

    Posted

    I have posted my "book" as a comment on another thread on this site, but a few days ago I started 500 mg acetyl-L-Carnitine once daily, and started feeling much better almost immediately. I have reason to believe that it is a genetic malfunction in my case that I need additional Carnitine.

    I started on Methimazole (MMI) much like Carbimazole, in 2009. I was able to discontinue it in December 2012, Then I was able to take supplementation for low thyroid (first Cytomel, then Levothyroxine added) since June 2013, but my TSH returned to zero (0.009) in November, so I was referred to another Endocrinologist who wanted me to decrease the Cytomel. My TSH had risen to 0.18 by the end of January this year, so I wasn't asked to discontinue it entirely.

    I will be retested for the thyroid toward the end of this month.

  • acoffin
    acoffin

    Posted

    Linda, I just want to give you an update on my daughter's health. About two weeks ago, my daughter started on acetyl l-carnitine, Vitamin D, fish oil, bugleweed tinture along with 2 other herbs. Her last lab test result was TSH <0.01 t4 f 24.4t3f 10.0...her lab test result from today is tsh 0.01 t4f23.6t3f 8.3. (her tsh has not budged in over a year until now...even when she took a high dosage of tapazole) we knew her test was going to change for the better because of her behavior...more energy, more talkative, no more sleep problems, no more moodiness, more social, laughing and kidding around with us...it's been amazing! we hope to continue to experiment with the dosage and will keep you posted. thank you for all your advise! t4="" f="" 24.4t3f="" 10.0...her="" lab="" test="" result="" from="" today="" is="" tsh="" 0.01="" t4f23.6t3f="" 8.3.="" (her="" tsh="" has="" not="" budged="" in="" over="" a="" year="" until="" now...even="" when="" she="" took="" a="" high="" dosage="" of="" tapazole)="" we="" knew="" her="" test="" was="" going="" to="" change="" for="" the="" better="" because="" of="" her="" behavior...more="" energy,="" more="" talkative,="" no="" more="" sleep="" problems,="" no="" more="" moodiness,="" more="" social,="" laughing="" and="" kidding="" around="" with="" us...it's="" been="" amazing!="" we="" hope="" to="" continue="" to="" experiment="" with="" the="" dosage="" and="" will="" keep="" you="" posted.="" thank="" you="" for="" all="" your="">
  • linda187
    linda187

    Posted

    Wow, that's amazing! I am so happy to hear that she is doing so well. Would she consider using a small dose of Tapazole like 5 mg along with everything else? If so, I know all her values will come into the normal range I would say within 2 weeks.
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