Efficacy, side effects and withdrawal effects of carnitine

I wanted to write about my personal experience with carnitine as treatment for ME/CFS. I'll try to apply some critical thinking as well.

A few years ago I first tried carnitine injections. They appeared to work but were also painful and had to be given often which was inconvienent and unpleasant due to the high acidity of the liquid. Eventually I gave up because I wanted something that worked better with fewer downsides.

Last year I started seriously taking carnitine again, in capsule form. I believe it might actually work, even though the effect is hard to quantify. I recognize that it can be difficult to distinguish fluctuations in the illness severity from the effect of a treatment.

It appears to act as mild stimulant in the short term, while over long periods of time also improves mental and physical endurance, which is crucial for ME/CFS (at least for how I conceive of it). With carnitine, I seemed to be less fatigued and need fewer daytime naps and at the end of the day wasn't totally exhausted anymore just from doing the lightest activities. I also became more mentally capable of sticking with a project and finishing it, even if I had to pause for days or weeks in between (which might just be another indicator that I'm less fatigued and therefore able to comit to projects instead of the extreme exhaustion constantly forcing me to quit).

I suspect it can also cause changes in light sensitivity of the eyes, as well as a feeling of mental overstimulation and irritability.

When I stopped carnitine abruptly, I became more fatigued, reduced my activity levels again, had more daytime naps and also experienced a frequent and distinct sensation that I know precedes hypoglycemia along with constant hunger. Genetic carnitine deficiency disorders are associated with hypoglycemia and the abrupt withdrawal might result in a situation where the body is used to an increased intake of carnitine and suddenly finds itself with much less of it.

It could also be that I stopped carnitine because I was becoming more ill and less capable of sticking to a plan (that of taking carnitine every day. I'm unfortunately so impaired that sticking to even simple plans that require consistence can be extremely difficult, borderline impossible).

The side effects are I think a hint that it's really affecting my phyiology. Maybe they also help me understand better how I am without carnitine (although they are probably exaggerating the difference due to the withdrawal). Self-reported health can also be unreliable in that people forget how badly they actually were affected if the change was slow and gradual over a longer period.

Is there some evidence that carnitine metabolism might be altered in ME/CFS and that supplementation could be helpful? Yes I think there is but it's not iron cast. I would certainly support a clinical trial that looks further into this.

 

If only everyone in our community did!

 

Thanks for posting your experiences with it, @strategist – it's an interesting topic. I found liquid carnitine like amphetamine or something, causing shaking, dizziness, vastly increased orthostatic intolerance, and a wired brain. I can take so little without rapid side effects that it's not worth buying it!

It's the only form I've tried, and only then because someone gave a bottle to me. I don't really use a lot of supplements, other than fish oil for extremely dry skin, BCAAs if I'm at risk of a PEM episode, and a folate tablet once a week to support my B12 injections (no idea whether I really need the folate, if I'm honest).

 

Vermeulen and Scholte 2004: "Exploratory Open Label, Randomized Study of Acetyl- and Propionylcarnetine in Chronic Fatique Syndrom" https://www.ncbi.nlm.nih.gov/pubmed/15039515

2018 the article has been open access: Although the treatment had delivered mixed result, they reported some tremendous success for quite more than the half of PwME, I believe it was. Sadly the success didn´t last for long, some weeks or months, as I remember.

The success of acetyl-carnetine and propionyl-carnetine showed a preference to physiological vs mental fatique (I don´t remember which was which one), interestingly. A combo was far less effective, and even made some more patients worse compared to the single treatments. (Hope I remember it rightly.)

 

ALCAR and ALA noticeably improved my cognitive function years ago, but I'm not sure if it improved my physical energy. I had to discontinue after 3-4 months because it made me feel jittery and negatively affected my sleep.

 

It found that the effect didn't work when they stop taking it, which is different from the effect not lasting.

3000 MG of l-carnitine made a substantial difference to me. I particularly noticed when I stopped taking it as one can adjust to improved function and forget how bad one was quite easily. Without it, I am bordering on very severe ME. With it, I have a lot better function but still have severe ME. I took it after reading about this trial:

Quite a lot of people have come across have only tried quite low dosages e.g. 500 mg or 1000 mg per day. I don't see that as the optimum dose so I see that as not really a proper trial. I can understand why some people take such low dosages as it can be quite expensive to take 3000 mg per day, if one don't know cheap places to get. Also supplement boxes seem to make up dosages. I remember seeing one years ago for DHEA, and for the 5 mg, 10 mg, 20 mg and 50 mg boxes, they all said take 1 to 2 a day!

 

Yes, I forgot that my sleep was also negatively affected, but I continued and after a few weeks this disappeared.

I take 500 mg because 1000 mg seems to be a bit too much. Ideally I would like more of the anti-fatigue and endurance enhancing effect of it with less of the mental stimulation part (that almost seems to be more of a negative than a positive).

When I had injections, the dose was considerably higher.

I also think that you need to take carnitine for a few weeks and months before full benefits become apparent. The short term stimulant part is not what makes it useful (a coffee can do the same).

 

Thyroid hormone also plays an important role in carnitine-dependent fatty acid import and oxidation. In this case it seems if you are hypothyroid it might have a more positive effect on energy output?

 

I also eat quite a bit of lamb which is a high source of l-carnitine.

 

Carnitine has been studied extensively because it is important to energy production and is a well-tolerated and generally safe therapeutic agent [7]. Researchers prefer to use acetyl-L-carnitine in research studies because it is better absorbed from the small intestine than L-carnitine and more efficiently crosses the blood-brain barrier (i.e., gets into brain tissue) [8].

https://ods.od.nih.gov/factsheets/Carnitine-HealthProfessional/

So maybe what I would need is a carnitine compound that does not as cross the blood brain barrier as easily as acetyl carnitine (which is what I'm using).

 

I just looked it up: there is 78mg per 100g. So hard to get a pharmacological-level dosage from lamb.

 

My daughter had a bad skin reaction to acetyl l carnitine.
There was a suggestion this was due to having corn it ( common seemingly) , but she is fine with corn.

We think it must be bleached in manufacture , she has had issues with bleached food since around age 4.
Seems to be the glucuronidation issue.

 

Some years ago during a mild ME phase I took ALCAR for about 2 years, can't remember the dose.

For a while it made a noticeable difference to mental clarity. I experimentally stopped it a few times and every time I got worse after 2-3 days, and better again almost immediately upon restarting.

No long-term effect though, my ME deteriorated* over that time. The ALCAR stopped working altogether after 2 years so I stopped taking it.

*I'm even suspicious the ALCAR may have indirectly contributed to this deterioration. At the time I was also taking D-ribose which gave me a physical boost (but also stopped working after a while). With extra energy both mentally and physically I may have ended up doing too much because the supplements were masking how low my real ability actually was. No way of proving it either way though.

 

I’m gradually experimenting with acetyl l carnitine capsules. I am feeling better. More mental clarity. More ability to sit down and focus on a task. But please note it is coinciding with a change in diet (returning to low sugar and carbs) and getting into some very good habits regarding naps and even if I feel like I can push on I try to spend significant portions of my day doing the kinds of mindless activities I could cope with when I was less well.
Although I’ve only been using for a couple of weeks I’m experimenting with coming off them. The main reason is because my Garmin watch is suggesting I am experiencing higher stress most days than I am used to. This could easily be due to being upright more often due to feeling more capable. Also I might have indications my sympathetic nervous system is dominating atm. Something I do tend toward but is even more marked (stress indicators being one of those signs). Adrenaline production is usual when the sympathetic nervous system dominates which I’ve learned from the past isn’t my friend.
The reason I’m doing this is to investigate if Dr Myhill’s treatment suggestions help me.

 

I'm glad to see you're being cautious. Could be a case of "false" energy as I suspect happened to me as described in my previous post:

Guess the trick would be to take the supplement but not increase activity at all. If the HR monitoring still shows problems it's probably the supplement itself. Whereas if the HR stuff is good it may be the supplement itself is fine but the increased activity is not. Which then raises the question does the supplement make enough difference to how you feel to make it worth taking even if it doesn't allow increased activity.

 

Exactly! You absolutely understand my concern. I might see how functional I am over the next week without it, compare my sympathetic nervous system indicators and reassess from there. The less commonplace supplements Dr Myhill recommends includes the acetyl l carnitine, NAD and CoQ10. There is a likelihood they interact synergistically.