Hi everyone, it was interesting to read the stories and experiences, so I decided to share mine. I'm a 42 year old guy, played sports all my life, had injuries but never had ilnesses or reasons to take any medicine. In 2023 I had a rare case of feeling sick (I rarely even get the flu, maybe once a year) and it lasted for a few weeks, so I felt weak and started taking a pretty strong multivitamin. Full dose of B6 in it was 50mg but I rarely took the full dose (3 capsules). I mostly took 1 (17 mg) and every now and then 2 capsules (34 mg). Sometimes along that I would drink magnesium + B6 (2mg) and hydration drinks containing around 1.2mg daily. So I would say my total intake would have been around 20-25mg daily for a period of 3 and a half years.
I have felt some numbness in the last couple of years but neglected it until about a month ago I hopped in my car with full AC on after playing sports in the heat. Then I started feeling tingling, numbness and pins and needles . First thought it was some nerve in the neck or elsewhere. After a few weeks , tingling turned into burning. I felt like I was burning under my skin - hands, arms, shoulders, sometimes back and legs too. When touched, the skin temperature is normal. Body temperature as well. But inside the feeling is like burning. The feel for outside temperature is weird, you could feel cold when it is hot and vice versa. But most of the time, the feeling is like you are having fever, except the body temperature would be normal (or even lower than normal)
EMG tests were good. My blood tests were good - liver and autoimmune diseases. Only weakly positive I had out of all autoimmune ones tested was Ro-52 and that is still being looked at. But doctors never thought about B6. I had to recollect my intake and diet and then my neurologist admitted it could be the cause. I am still early in this so not much beneficial experience I can give to be honest. My B6 test showed 53 (7-27 normal range at the lab I did it). Also, I did the test 2 weeks after I had already stopped taking any B6 containing supplements. One neurologist (the one who did the EMG) prescribed milgamma 3 times a day which is 270mg of B6 per day. I took that for 3 days not knowing what milgamma was and not suspecting anything about B6 toxicity until on the 3rd day I made the connection and stopped it. 2 weeks later I did the B6 test. So, overall, I am still not 100% sure if my symptoms are based on the long vitamin B6 intake but so far there is no better explanation. After all, I took supplements without pause for 3 and a half years, so it is a plausible cause.
It feels worse in hot weather (anything above 25C here in Europe). Some colder days it feels almost gone, then it comes back. Some days I don't really feel my legs well, which is probably the worst feeling so far. I am still walking but you kind of feel like a zombie , it's hard to explain.
I am hoping to get the levels down in 2-3 months and with colder weather here hopefully I can feel better through fall and winter. Good luck to everyone going through this! If anyone is interested, I will share my progress (or lack of) in the next months ahead. Hopefully, health agencies and the ones who make regulations would put even more restrictions and warnings on B6 related products. All the best, take care!
Hello @yp6, Welcome to Connect. You might also find the following related discussion helpful:
-- High Vitamin B6: How can I lower it?: https://connect.mayoclinic.org/discussion/high-vitamin-b6/
It sounds like you have already taken some steps to lower your B6 levels. If you haven't seen this article, it may provide some suggestions you haven't tried yet:
-- How to Lower B6: https://www.everydayhealth.com/heart-health/how-to-lower-b6/
Did your doctor give you any suggestions on how you can lower your levels of B6?