Looking for people who have high levels of B6 trigger neuropathy.

Posted by margesil @margesil, Nov 27, 2024

Two years ago I experienced a number of different symptoms that I thought were disconnected…nausea, heartburn, walking off balance, burning/ pinprick pain in feet, numbness. Found they were, in fact, symptoms of B6 toxicity. Requested bloodwork to test my theory, despite doctors skepticism. Level was at 72! ( norm near 10) I changed supplement so B6 was only 4 mg. Tried to cut down foods high in B6 , but found it difficult, as they were most easily digestible. After 6 months, B6 gradually came down, meds helped with digestive issues, lost 30 lbs. Unfortunately, the neuropathy has remained. I recently found myself with more wobbly gait, some sensitivity to light, just feeling off. Bloodtest showed B6 creeping back up, now 32. Has anyone found a reason for why B6 absorption may be problematic, if supplementation is not a cause?

Interested in more discussions like this? Go to the Neuropathy Support Group.

my case similar symptomology except B6 staying WNL as long as no Mg supplements. My main continuing issue is the wobbly gait. I've had vestibular tests; all normal. Has anyone found a successful therapy for the wobbly gait??

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Hola, alguien ha tenido sintomas de trastornos mentales aasociados a toxicidada con B6? Yo me ehe sentido mal, con ansiedad y ataques de panico, asi como mas sensible a todo y a veces enfurezco por todo.

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Two years ago I was having severe leg and foot cramps. My blood work showed my B6 to be 52, up from 26. I had to stop taking a supplement I took for my tortuous redundant colon, Emma. It worked great, better than anything else I tried before it or after going off it it. It had mega amounts of B6 in it. So I stopped and 3 months later it was back to normal. But I was also developing strange sensations in 3 toes in my left foot. The podiatrist suspected peripheral neuropathy and told me to keep and eye on it. I was off of it for a little over a year and tried again. I asked for bloodwork at my wellness visit in May of this year and it was 86. I went back off of it again. I was also take a hydration product that had a lot of B6 so I discontinued it also. Now I have tingling and some pain in my right foot, after I stopped taking the B6. After reading some of the comments, I would say I have experienced wobbly gait also more recently. I am also taking magnesium to help me sleep. I noticed assieljr mentioned magnesium in his note. I have researched self help ideas for peripheral neuropathy. Working on some of them. Any suggestions?

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Profile picture for dianesgk @dianesgk

Two years ago I was having severe leg and foot cramps. My blood work showed my B6 to be 52, up from 26. I had to stop taking a supplement I took for my tortuous redundant colon, Emma. It worked great, better than anything else I tried before it or after going off it it. It had mega amounts of B6 in it. So I stopped and 3 months later it was back to normal. But I was also developing strange sensations in 3 toes in my left foot. The podiatrist suspected peripheral neuropathy and told me to keep and eye on it. I was off of it for a little over a year and tried again. I asked for bloodwork at my wellness visit in May of this year and it was 86. I went back off of it again. I was also take a hydration product that had a lot of B6 so I discontinued it also. Now I have tingling and some pain in my right foot, after I stopped taking the B6. After reading some of the comments, I would say I have experienced wobbly gait also more recently. I am also taking magnesium to help me sleep. I noticed assieljr mentioned magnesium in his note. I have researched self help ideas for peripheral neuropathy. Working on some of them. Any suggestions?

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@dianesgk

I have increased my walking for over a year now and added strength training and weight bearing exercises for my osteoporosis and been diligent to make sure I am hydrated. Hope it eventually provides some help. I read a previous comment that it can.

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Profile picture for dianesgk @dianesgk

Two years ago I was having severe leg and foot cramps. My blood work showed my B6 to be 52, up from 26. I had to stop taking a supplement I took for my tortuous redundant colon, Emma. It worked great, better than anything else I tried before it or after going off it it. It had mega amounts of B6 in it. So I stopped and 3 months later it was back to normal. But I was also developing strange sensations in 3 toes in my left foot. The podiatrist suspected peripheral neuropathy and told me to keep and eye on it. I was off of it for a little over a year and tried again. I asked for bloodwork at my wellness visit in May of this year and it was 86. I went back off of it again. I was also take a hydration product that had a lot of B6 so I discontinued it also. Now I have tingling and some pain in my right foot, after I stopped taking the B6. After reading some of the comments, I would say I have experienced wobbly gait also more recently. I am also taking magnesium to help me sleep. I noticed assieljr mentioned magnesium in his note. I have researched self help ideas for peripheral neuropathy. Working on some of them. Any suggestions?

Jump to this post

@dianesgk I experienced a number of seemingly disconnected symptoms 4 years ago that turned out to be a B 6 toxicity issue. It was up to 74 then. Changed to no B6 supplement, and gradually got under control. Neuropathy remained with doctor saying damage was permanent . Over last few months I noticed a worsening of balance issues that I assumed was just a getting older problem. Surprise! The magnesium I started to take for cramps, sleep help had 2000 more B6 than daily required. I hadn’t noticed that it was added! Blood test showed B6 was up to 95!!!
Other than balance , it seems to have triggered OLP that had been dormant in my mouth. Stopped taking , but now I’m dealing with both problems, Using a steroid gel for mouth issue to resolve. Lesson learned: blood work will be tested for B6 3-3 times a year. I’ll be seeing my endocrinologist to check why my body is not metabolizing B6 normally. Yes, Mg had high amounts, but in past I was able to utilize body’s enzymes etc to rid myself of B6. I know staying hydrated, exercising is important as well. It seems like a little problem, but out of control it causes a dominoe of bigger ones,

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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!

REPLY
Profile picture for yp6 @yp6

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!

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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?

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Profile picture for John, Volunteer Mentor @johnbishop

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?

Jump to this post

@johnbishop Hi John, thanks for the links! My doctor has not mentioned any specific methods besides stopping any B6 containing supplements and drinks and retaking the test in 3 months. We have not discussed diet, maybe because of the assumption that B6 from foods does not fall in the same category as the one from supplements.

I am usually very active but cannot play sports right now so I try to at least get 10000 steps in daily and drink a lot of water, eat watermelon and other fruits. Hopefully things get better with time. Maybe it's just me, but when it is really hot outside, symptoms feel worse. Again, thanks for the welcoming message and the links. I am already reading the 2nd one you sent.

REPLY
Profile picture for margesil @margesil

@dianesgk I experienced a number of seemingly disconnected symptoms 4 years ago that turned out to be a B 6 toxicity issue. It was up to 74 then. Changed to no B6 supplement, and gradually got under control. Neuropathy remained with doctor saying damage was permanent . Over last few months I noticed a worsening of balance issues that I assumed was just a getting older problem. Surprise! The magnesium I started to take for cramps, sleep help had 2000 more B6 than daily required. I hadn’t noticed that it was added! Blood test showed B6 was up to 95!!!
Other than balance , it seems to have triggered OLP that had been dormant in my mouth. Stopped taking , but now I’m dealing with both problems, Using a steroid gel for mouth issue to resolve. Lesson learned: blood work will be tested for B6 3-3 times a year. I’ll be seeing my endocrinologist to check why my body is not metabolizing B6 normally. Yes, Mg had high amounts, but in past I was able to utilize body’s enzymes etc to rid myself of B6. I know staying hydrated, exercising is important as well. It seems like a little problem, but out of control it causes a dominoe of bigger ones,

Jump to this post

@margesil Update: Supplements have been the same with one exception. Realized my Mg supplement had added B6 that I hadn’t noticed, 2000x daily or 37 mg, Symptoms had worsened over 8 months taking it, Stopped 2 months ago and finally got B6 test results back. It went from 95 to 6 ! The OLP it triggered into painful lesions finally have subsided after 2 1/2 months with help of steroid gel. Though stopping the Mg supplement , solved high levels, my doctor has agreed to check B6 levels on a 3x a year basis to monitor and avoid these cascading problems.

REPLY
Profile picture for yp6 @yp6

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!

Jump to this post

@yp6
I have spent some time carefully reviewing the literature on B6 toxicities associated with neuropathy and it does appear to be a solid link with higher doses associated with higher frequency of PN symptoms and severity of symptoms reported. I have significant PN symptoms associated with T2D diabetes and several toe and foot amputations and started a OTC B6 supplement that contained 100mg pyridoxine several years ago. I discontinued pyridoxine after reviewing the literature and have not observed a significant change in my PN symptoms after 4 months. IN the US, a supplement containing no more than 100mg is unregulated to my knowledge and that is definitely in the sweet spot for B6 toxicity.

Elevated B vitamin levels in the blood can be caused by several underlying medical conditions. So followup blood testing may be warranted, especially if your PN symptoms worsen or plateau at elevated levels.

Kidney dysfunction: Reduced kidney function lowers the body's ability to clear B6 metabolites, causing them to build up in the blood.
Hypophosphatasia (HPP): A rare genetic disorder affecting the ALPL gene that causes an accumulation of the active form of B6 in plasma.
Liver disease: Compromised liver function can alter how vitamins are processed and released into the bloodstream.

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