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What changes did you notice during recovery from a diagnosed carnitine deficiency?

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
421
Location
Geneva, Switzerland
Please please please share your story here of what happened after you replenished a diagnosed carnitine deficiency! It would help me to estimate what of the many changes in life I experience actually come from carnitine and what things get worse before they get better. Where to be patient, when to adjust dosage or take other action. How does it feel for you day-by-day? How long did it take until you started noticing this or that?

Your personal experiences (and lab values) would be much appreciated!!
 
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Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
421
Location
Geneva, Switzerland
Here is my story:
Labs:
I had a longstanding carnitine deficiency, as bad as this:
total carnitine: 16 µmol/L (29-70)
free carnitine: 6 µmol/L (18-48)
acylcarnitines: 10 µmol/L (7-26)
acylcarnitines/free carnitine ratio: 1.67 mol:mol (<0.50)

I repeated these measurements many times and had always almost exactly the same results. Except one time when I had a mild flu. Then my values plummeted even further:
total carnitine: 10 µmol/L (29-70)
free carnitine: 8 µmol/L (18-48)
acylcarnitines: 2 µmol/L (7-26)
acylcarnitines/free carnitine ratio: 0.25 mol:mol (<0.50)

A urinary carnitine test showed almost zero loss into urine. That is, kidneys problems (e.g. an OCTN2-defect) are not to be blamed for my low values.

Supplementation - failures, dosages and finally success:
First, I tried everything on earth to improve my carnitine in simple ways ... but all the super tasty carnitine-rich meats cause digestion probs in me, just like oral supplements do (the best are: kangaroo, beef, lamb, ... - I offer to send tables of carnitine contents and I would like to get your papers, books, websites on carnitine contents). So I tried transdermal carnitine. I had many symptomatic changes such as faster thinking, better appetite, better tolerance for food, and better memory. But I think meanwhile they were probably all caused by transdermal niacin I started around a simillar time, which did increase my previously deficient B3 levels. Only carnitine tartrate has research (I offer to send the fulltext in PM) that it could absorb through the skin, but inspite of using a PhD dermatologist's PEG absorption enhancers, and inspite of increasing dosage to several grams, it did not increase my serum carnitine levels. But could it be that it actually worked a bit and the little carnitine that maybe absorbed transdermally simply got used up and caused these benefits? Finally, I tried carnitine injections. A doctor was willing to teach me how to selfinject and prescribed me everything from injectable carnitine to needles. So I am now a "medically trained carnitine drug-addict" needling myself every day, yeah :eek: :D. I hoped for a wonder, but nope: I felt nothing at 100 mg/day. I increased the dosage. At 600 mg/day I had an unsuspected change: within a few days, I could clearly feel how my colonic peristalsis started working more intensely. My stool passage time (mouth to toilet) shortened. There are several publications that carnitine deficiency causes gastro dysmotility and carnitine supplementation improves it: ref1 ref2 ref3. But while improving peristalsis, at the same time, I started waking up at night with my digestion actively working. This is so annoying! And it does not at all seem to lessen with time, in fact it even gets worse!! :eek: :eek: :eek:Please help if you have any ideas!!! These peristalsis-induced sleeping probs just kill me. I do not want to give up carnitine or reduce dosage because this is my big big hope to cure my severe small fiber neuropathy that causes my POTS. There are several papers that small fiber neuropathies of varioussest etiologies can be cured using carnitine, for example: research1. research2. While in me the etiology of my small fiber problems is not known, the POTS they cause (as diagnosed by the country's best POTS specialist and as described for example in the "neuropathic POTS" section here) keeps me in bed almost all day. And last but not least, could these huge IV dosages cause side effects over time, for example because of the extreme fluctuations? (of course the doctor has no idea)
 
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Wishful

Senior Member
Messages
5,859
Location
Alberta
Are you showing symptoms of carnitine deficiency (whatever those might be)? Your blood levels might be below the range considered 'normal', but I expect that some people are outside the ranges considered 'normal' for many things, yet are still healthy. Humans just vary a lot. The range for 'normal' is probably meant to fit 80% of the population or some such artificial limit. They are not absolute 'be within it or die' limits.

If you aren't noticing significant improvements from taking large doses in different ways, then maybe your body's 'proper' level for carnitine is simply lower than most of the population.
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
421
Location
Geneva, Switzerland
Meanwhile I am confident that a wonder has happened: thanks to carnitine, I can do some moderate force training again. Ever since I am sick, force training led to a flu-like feeling in me, and sometimes it made me suffer for weeks. Example: I did 10 pushups and I was sick "with a flu that is not a flu" for 2-3 weeks...
Now I can do all sorts of calisthenics without probs.
OK ... not yet this one :D
Calisthenics_Workout-770x385.jpg

-- I dream of being able to do this feat one happy happy day in the future when I got healthy :love:

It is strange, though, that replenishing a carnitine deficiency improved my ability to do force training. It would be supposed to improve aerobic performance. But I always could run a bit.
... I wish I would understand this mystery. Please post anything if you have an idea!! I feel it wants to tell me something very important about my body....
  • maybe it is somehow related to my badly low carnitine values when I had that moderate flu for which I posted the labs above?
  • maybe it is somehow related to the fact that I developed this "flu after very mild force training" issue after getting an EBV?
 
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Rufous McKinney

Senior Member
Messages
13,467
There are several publications that carnitine deficiency causes gastro dysmotility and carnitine supplementation improves it: ref1 ref2 ref3. But while improving peristalsis, at the same time, I started waking up at night with my digestion actively working. This is so annoying! And it does not at all seem to lessen with time, in fact it even gets worse!! :eek: :eek: :eek:Please help if you have any ideas!!! These peristalsis-induced sleeping probs just kill me

My system is IBS-d....and so everything goes thru too quickly. So I have way too much digestive activity when I'm trying to sleep and it is very disrupting.

So when I take digestive herbs for the IBS-d, it slows this all down and I am less likely to be up a 4 am sitting on toilets moaning (throb, bloat).

I take one 500 mg carnitine a day. But have no info on deficiencies.
 

junkcrap50

Senior Member
Messages
1,362
@Lolinda How did you become deficient in carnitine in the first place? My doctor thinks it's not really possible without having a genetic defect & deficiency from birth (how most cases are).

What were your symptoms, besides peristalsis? Did you have any myalgias or muscle aches/pains? It seems like you can exercise more. Did you have any muscle burning or lactic acid buildup/pain occur very easily/quickly from climbing stairs for example?
 

Mick

Senior Member
Messages
138
I didn't have a carnitine deficiency confirmed by lab tests. Maybe it was too late for the test to show anything because by then I was heavily supplementing with carnitine. And for many years it worked... but then it stopped...

But let's start from the beginning... when I had muscle pain I went to a muscle neurologist and she said to take carnitine - kind of to just get rid of me, kind of see what happens as there were suspicions that it may have something to do with carnitine. At the moment tests were unavailable (became available just two months later).

So I took 500 mg of carnitine in the late afternoon. And it was a mistake. You should never take a new supplement or drug in the evening. I started experiencing extreme heat production, extreme agitation, etc.
Couldn't even sleep during the night and the next day.
So, I knew that I was deficient. And the muscles were absorbing carnitine extremely fast and putting it to use.
The next dose was actually 125 mg. And carnitine helped me for like a few good years.

But then it stopped. I, of course, performed carnitine testing, and it didn't show any deficiency, and I don't have a defective gene (this would show in my genome sequencing results - maybe you should get one?).

Over the years I returned to carnitine and many times I felt a good boost in functioning but then it kind of stopped.

But now I'm desperate - again. I have to do something. Obviously, I will not get a doctor to prescribe me carnitine injection, I can only supplement more effectively with oral carnitine. Higher doses and before high-carb meals that will increase my insulin and thus increase my carnitine absorption into muscle cells.

Maybe you have some other ideas as a specialist in carnitine supplementation?
I know it's bad to have a carnitine deficiency but you kind of know what is wrong with you...
It's better than not knowing at all...
 

Mick

Senior Member
Messages
138
PS. Do you experience muscle cramps? I experience severe muscle cramps consistent with myotonia but I also don't have any mutations associated with myotonia, so it's strange.
 
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