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Question about Carnitine

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by PeterPositive, Dec 20, 2013.

  1. PeterPositive

    PeterPositive Senior Member

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  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't know about fumarate, but this page refers to some forms of carnitine. I think there is some evidence that combining it with alpha lipoic acid is beneficial. I take a supplement that combines acetyl-l-carnitine with alpha lipoic acid. I can't say anything certain about how it affected me as I had also been making other changes, but I had a rapid but brief energy boost at first, and in the following months my muscles started building up again, and have stayed good.
     
  3. Freddd

    Freddd Senior Member

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    HI PeterPositive,

    The carnitine question is complicated and my answer for people with CFS/ME/FMS is that according to the results with people, the kind does matter for many of us. For those in whom it makes a difference 90% respond only to the fumarate variety, which is the specific fat transporter to mitochondria. Some unknown genetic variation may be the cause. For those in whom the fumarate doesn't "work" most obviously, ALCAR often works for about 10%. Also the Jarrow liquid freebase carnitine seems to work for both groups. All of the braqnds people have found works best are from carnitine made by Sigma Tau in Italy. Both the Jarrow and Drs. Best are Sigma Tau manufactured. I have never found a combination product that works at all for me. For effectiveness take half an hour before food.

    Here is the thing, If a person can get it working, and then goes to try another kind and it stops working and then goes back to the one that works and it does, then one knows. If one flounders around trying everything except the ones found to work for most of us, then the answer might not be found.

    The ALCAR is the darling of the industry and mostly completely ineffective for FMS/CFS/ME as demonstrated here by many people. Carnitine is two amino acids and has been considered a vitamin because not everybody can synthesize enough of the right kinds for them.
     
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  4. Gloria H

    Gloria H

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    I used Swanson's Acetyl L-Carnitine & noticed no help. When I started Swanson's L-Carnitine Fumerate I noticed better energy. I've been taking 2/day, 1 when I get up in the morning [30 min. before food] and 1 between breakfast & midday meal. Blessings to you
     
    UM MAN likes this.
  5. Freddd

    Freddd Senior Member

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    Hi Gloria,

    That is good to hear. Keep a diary. Pay attention to what changes and what doesn't. You likely will get more clues. If you have a lot of different kinds of muscle pains, some will likely improve over days to months. Other things can improve. L-carnitine can influence new mitochondria being made, existing ones working better, neuroblasts for neuron repair, osteoblasts for bone formation, muscle healing and growth, etc., as long as not deadlocked by shortage of MeCbl, AdoCbl and l-methylfolate and all the other vitamins and stuff. When things get going need for potassium usually appears shortly thereafter as does folate insufficiency symptoms. Be ready for them. Low potassium can be dangerous or fatal.
     
    Gloria H likes this.
  6. PeterPositive

    PeterPositive Senior Member

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    @Freddd thanks for the detailed explanation.

    Good to know, thanks. :)
     
  7. SOC

    SOC Senior Member

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    When I was looking into carnitine, I found that it is contraindicated for people with hypothyroid (low thyroid function) as it can make hypothyroid worse. Since some of us are hypothyroid, we should be cautious about using carnitine until we know thyroid status, as good as it may seem for some of our symptoms.
     
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  8. Freddd

    Freddd Senior Member

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    Hi Soc,

    Well then, I guess I wasn't supposed to heal and just quietly go to my death because somebody says that the successful therapy is "contraindicated". And many here are hypothyroid. It in no way affected anything thyroid for me or anybody I know of. I have been hypothyroid since age 8. I would have to say that based on years of results and people getting better that the author of that article got it totally wrong. Of course the author wasn't considering l-carnitine fumarate as part of the deadlock quartet and using it with AdoCbl MeCbl and l-methylfolate. I would imagine the author knows nothing about healing CFS, FMS, ME and congestive heart failure. Paradoxical folate deficiency or methylblock however a person got there appears to be connected with autoimmune diseases and B12 /folate deficiency is suspected as being the cause of Hashimoto's thyroiditis. I'd have been dead years ago without it. And some suggest that 900pg/ml is the top "limit" for b12. It takes 100,000pg/ml for many of us to get neurological healing. I guess that those who want to get well just have to be able to get past all the wrong things said. Everything that actually works for ME/FMS/CFS is contraindicated by somebody. That may be why there is such a huge blank spot and that we have ME/CFS/FMS at all. It's the 21st century mystery disease who's cause is invisible and impossible according to all sorts of theories. That's why it was difficult to find. It was created by faulty assumptions, definitions and research.
     
    Last edited: Dec 22, 2013
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  9. ahmo

    ahmo Senior Member

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    @SOC, During the 9 months I've been on Freddd's Protocol I've reduced my thyroid med (T3) from 60 to 40mg. Never been so low in my adult life. Nor have I ever been so well in many ways. I tried 2 other forms of carnitine and felt nothing; LCF was the one that made a difference. cheers, ahmo
     
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  10. Freddd

    Freddd Senior Member

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    Hi Ahmo,

    One little thing I would like to add. The thyroid gland has a relatively high density of mitochondria. This would indicate that it NEEDS LCF and AdoCbl in order to function properly. Lack of LCF and AdoCbl could very well cause damage as it does in the nervous system by it's lack. Glad to hear you doing well. Keep up the good health.
     
    Little Bluestem likes this.
  11. SOC

    SOC Senior Member

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    Now that's just silly. I can't imagine why you would draw such an extreme conclusion.

    Carnitine is contraindicated for people with hypothyroid because it can lower thyroid levels. For that reason, it is wise for people with hypothyroid to use carnitine with caution, as I said. Caution would include starting low, increasing very slowly, and keeping an eye on thyroid levels to make sure you don't make your hypothyroid condition worse.

    Ridiculous, illogical extremism would include going to your death (which I consider unlikely just by avoiding carnitine) or taking a supplement that might cause you problems without sensible precautions.
     
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  12. SOC

    SOC Senior Member

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    Congratulations. Glad it worked for you.
     
  13. Sea

    Sea Senior Member

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    Most of the research I've read is about how Carnitine is useful for hyperthyroid because of its effect on thyroid hormones.
    http://www.ncbi.nlm.nih.gov/m/pubmed/11502782/

    http://www.ncbi.nlm.nih.gov/m/pubmed/15591013/?i=2&from=/11502782/related

    Then I've read in lots of places warnings about Carnitine in hypothyroid cases, but I haven't seen any research. So far all I've seen seems to be an assumption that since it is good for hyperthyroid it must not be safe for hypothyroid.

    It will be good to see the results of this trial when it's published. Primary outcomes are only fatigue questionnaires, but thyroid hormones are measured as other outcomes.

    http://clinicaltrials.gov/show/NCT01769157
     
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  14. Freddd

    Freddd Senior Member

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    Hi SOC

    There are studies of using carnitine for reducing symptoms of hyperthyroidism. That is true. However, in this specific CFS/FMS situation many have hypothyroid and the main fear of people taking carnitine and the other deadlock quartet is that it increases thyroid output. Based on actual testing of many people here because of these concerns of overproducing thyroid hormone and in my case, routine testing as I've been at this hypothyroid correction for 57 years.

    Caution would include starting low, increasing very slowly,

    I titrated over a period of a year at the rate that kept healing going strongly. I have never ttaken a large dose and normally advise agains them. Also, knowing the symptoms that requires microtitration to avoid horrendous neuropsychological symptoms I caution people of that.

    Ridiculous, illogical extremism would include going to your death (which I consider unlikely just by avoiding carnitine

    It was well researched by me and completely logical. Avoiding carnitine would have caused my death just by doing exactly what I was.

    I was past typical life expectancy post congestive heart failure diagnosis. I was at 285 pounds and barely holding. Within 24 hours of starting LCF I started shedding pounds of water per day and dropped 45 pounds of water in a month. My capacity for walking level exercise doubled overnight with the very first dose I am now healed of congestive heart failure and weigh 185-195 pounds. That was after putting on 50 pounds of muscle after I was started on carnitine. My heart is restored as well as all the rest of my muscles. My healing was deadlocked on no carnitine. It could have become a permanently DEAD, locked in a coffin any day. The odds were pretty good that I wasn't going to be alive a year later and I would have been in a wheelchair if I had made it that far. Each day delay increased the non-repairable neurological damage and increased the potential of dropping dead from heart failure.

    So because of L-carnitine fumarate, I am recovered from FMS, CFS. ME 100%. I have perhaps 75% remission of SACD and not in a wheelchair and not likely to be as long as I continue the entire Deadlock Quartet and other necessary factors. And compared to 10 years ago, I'm taking 13 mcg more of Levothyroxine daily than I did then, and that is based totally on a change in preferred interpretation of tests by my internist. That's a whole lot of no difference.
     
    Last edited by a moderator: Dec 22, 2013
  15. Mogwai

    Mogwai

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    I found out the hard way! I was taking Acetyl-L-carnitine and it exacerbated all of my low thyroid symptoms. Kind of amusing sitting in 30 degree heat with slippers and gloves on - my temperature dropped to under 35 degrees on it... Reading up on it further, I realised I wasn't the only one that had suffered.

    That said, I haven't tried L-carnitine fumarate. What's the difference? It's probably been explained here before...

    EDIT: Explained on this very thread in fact!
     
    Last edited: Dec 23, 2013
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    What are the symptoms that require microtitration to avoid horrendous neuropsychological symptoms?
     
  17. bertiedog

    bertiedog Senior Member

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    What sort of doses are recommended of L-Carnitine Fumerate to start?

    Thanks Pam
     
  18. South

    South Senior Member

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    Although there is some description on this thread that one form of carnitine may give energy to a person, whereas another form may work for another person, there does not seem to be any info on whether one form of carnitine is more likely to reduce thyroid function than another. There is a study cited in one of the posts on this thread about carnitine being used for hyperthyroid, to reduce thyroid, and it is unclear whether this means the form of carnitine used in that study would also lower thyroid in hyPOthyroid people. Also unclear is whether other forms of carnitine would have any effect on thyroid in such a study.

    I think these are valid questions. It is often up to us to experiment on ourselves, as medical studies are so slow in coming. It's only fair to tell people to keep track of their body temperature (the easiest measure of thyroid status although not foolproof), when they embark on a carnitine supplement. Simply not mentioning that possibility isn't fair, in my opinion.
     
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  19. Freddd

    Freddd Senior Member

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    Hi Little Bluestem,

    First of all a person has the "usual symptoms" of FMS/CFS/ME, lot's of them across many body systems. Most people here have or at least started with a sizable selection in any of multitudes of combinations. In additions, "wired but tired" is often noted, anxiety, fearfulness, a greater than average "risk averseness". An extreme reaction to MeCbl, L-methylfolate, AdoCbl or any effective carnitine consisting of "unbearable" intensities anxiety, fear, panic, rage, homicidal rage, severe depression.

    Again usually some combination of such symptoms which may last various length of time dependent upon item and dose. In addition many who have had a Valium or Klonopin (mostly typically) prescribed and then after reaching accommodation at a given dose find they have increasing symptoms of what is often called "tolerance withdrawal" (a misnomer in my opinion, more of a side effect overwhelming the desired effect from what I see) that makes it near impossible to withdraw and very likely of having those mood effects with carnitine, if not other components of the deadlock quartet. It appears to be a direct effect of ATP startup in what appears to be the limbic circuit in the brain by the neuropsychological effects. I have had 2 reports by people who have successfully microtitrated the liquid carnitine and had that response decrease and go away allowing them to take larger doses of LCF that get the body mitochondria functioning better and are able to .

    This is all based on people who have reported these symptoms and reactions and trials. It is very much bleeding edge. It appears to work for some people. Once that response fades away they can proceed normally.
     
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  20. Freddd

    Freddd Senior Member

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    HI Pam,

    That depends upon regular titration or microtitration.
     

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