Anyone here with carnitine deficiency?

yirara

Not looking for people who think L-carnitine will help with losing weight or quicker recovery but people who have an actual deficiency. Would like to chat. Been suspected to have a fatty acid oxidation disorder of some type for a while now and started using L-carnitine just as a test until I finally get to see a doctor. For me, it seems to make some difference, partly in preventing me getting sick, but also in being able to fast longer. Normally I need to eat by 10:00 in the morning on home office days as I'd otherwise hit the wall. Now I can fast until nearly 12:00. Not sure though if it's just placebo effect and I will get a big kick in the *kitten* in a few days.

SuzanneC1l9zz

I'm actually being tested for a fatty acid oxidation disorder myself right now. Maybe I should try L-carnitine too!

yirara

Hello there, @SuzanneC1l9zz You're much further than me. I've just moved internationally and my health insurance is not sorted yet. Thus can't even go to a GP to get a referral. I have no idea for how long L-carnitine stays in the system, thus whatever happens, I'll have to stop it at some time before a bloodtest. But for how long? No idea. Info is very scarce on that one. It also seems to tamper with thyroid hormones, thus I might need to adjust my levothyroxine at some time.

Something really odd happened yesterday during my run. I don't know better than having a very high HRmax. My HR has always been super high when exercising. Every now and then I saw a sudden drop of about 15-20bpm during running, lasting no more than 3-5 minutes. I notice this because I feel very mildly out of breath at the beginning. And then it doesn't bother me anymore, then HR goes up again. I had some exercise test at the beginning of this year, and a mild argument with the doctor afterwards about ventilatory thresholds, and that what he proposed didn't fit my running data at all as I'd be running full anaerobic for over an hour when I'm really fit. Yesterday the strange thing:

My HR just dropped dropped to a level I was never able to run at at all! And stayed there the whole time. And it didn't bother me at all. No idea what exactly this means. I'm confused. It's like my body saying: Need moar oxygen. Heart, beat a lot faster now! Oh, all is fine, just slow down now.

SuzanneC1l9zz

Oh interesting! I have some autoimmunity issues going on with my thyroid, so maybe I'll wait and run it by the relevant doctors before supplementing. I have a rare disease and every little change I make to medication or supplements has to be approved by 2 or 3 doctors first because everything always interacts. Even finding a specialist who understood my condition took years and he's in a different city several hours away. It's a pain!

yirara

SuzanneC1l9zz wrote: »

Oh interesting! I have some autoimmunity issues going on with my thyroid, so maybe I'll wait and run it by the relevant doctors before supplementing. I have a rare disease and every little change I make to medication or supplements has to be approved by 2 or 3 doctors first because everything always interacts. Even finding a specialist who understood my condition took years and he's in a different city several hours away. It's a pain!

I hear you Suzanne! I tried getting seen by any specialist doctor for years, but in the UK the system is so broken that it never happened, regardless of how much my GP tried. When I moved away I let it slack due to previous experience and sat at home with repeated acidoses, and when I tried again I didn't get much further than some internal medicine doctors/cardiologists/pulmonologists due to Covid. Sigh. Now I've moved again, and am waiting for my health insurance to be fixed (problem with moving within Europe) so I can finally go and see a GP and start again.

SuzanneC1l9zz

That has to be so tough! Our system isn't perfect, by a long shot, but at least there's some continuity. If I can say one good thing came out of the pandemic, the rise in virtual care has been a huge benefit for me! The doc may be 3 hours away, but he's happy to do appointments by phone or video call. That was never an option before the healthcare system was forced to fund it.