Simple fasting blood test to check serum b6 levels. Took a minute to draw the blood, had the results within a day... jaws dropped at the team of doctors at Mayo when my prediction of toxicity came out to be true. (very satisfying)
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Started taking B6 and feeling funny. Help Please. :(
- Thread starter boo85
- Start date
Honestly? I WAS taking folic acid (pre-learning about MTHFR) and now take super high doses of folate and STILL don't tolerate b6 nor P5P very well. I had to quit taking p5p when my nueropathy symptoms returned last month, thankfully they stopped shortly after dropping that supplement. I may try to break down capsules and take a few grains, but honestly? at this point, I'm just skipping it.
I'm assuming the intolerance is probably related to genetics tied to not having the right supports in place... and will focus on getting my other b vitamins up and running.
I know -- it's just so incredibly frustrating. On my NutrEval test it indicated a need for b6, but every time I've tried it, (or, if I take it for more than a couple days), then I either get the stocking-glove numbness, or more recently, it seems to cause a more severe form of RLS -- lots of uncomfortable jerks and almost kicks during the night.
It's also supposed to help lower kynurenic acid -- which is a neurotoxin (and was high on my OAT test -- and also help the body process both oxalates and salicylates/phenols -- and make new red blood cells, etc -- but -- can't seem to tolerate it at all.
p.s. I'll never understand where Mayo gets it's reputation. I think it must come from old movies or something, as I've heard nothing good about the place, esp when it comes to ME/CFS.
p.s.p.s.:
The following is a message I got from someone in the Cutler group back in 2011. Cutler, by the way, said that problems with b6 were common, and he attributed it to heavy metal (esp mercury) issues.
Anyway, this woman was talking mainly about the salicylate/phenol connection:
"As far as the salicylates go, we had something similar, if not the same, phenol intolerance. Because our biochemistry was so messed up we couldn't excrete the salicylates/phenols efficiently so for maybe the first year, we ate a lot of bland food like peeled yellow apples and pears, white grape juice, rice, chicken, potatoes, etc. Yep, boring as heck. Worked though. Vitamin B6 makes this condition WORSE. We had to avoid it for a couple of years, supplementing the other B's separately which was a pain. Methylating agents seem to improve the salycilate/phenol problems, that is, it becomes easier to excrete the stuff in colored and spicey foods that were causing us problems."
It's my understanding (per Rosemary Waring) that b6 makes it worse unless one has enough magnesium, but I can't seem to tolerate supplemental magnesium for the last year or so either. FUN.
The following is a message I got from someone in the Cutler group back in 2011. Cutler, by the way, said that problems with b6 were common, and he attributed it to heavy metal (esp mercury) issues.
Anyway, this woman was talking mainly about the salicylate/phenol connection:
"As far as the salicylates go, we had something similar, if not the same, phenol intolerance. Because our biochemistry was so messed up we couldn't excrete the salicylates/phenols efficiently so for maybe the first year, we ate a lot of bland food like peeled yellow apples and pears, white grape juice, rice, chicken, potatoes, etc. Yep, boring as heck. Worked though. Vitamin B6 makes this condition WORSE. We had to avoid it for a couple of years, supplementing the other B's separately which was a pain. Methylating agents seem to improve the salycilate/phenol problems, that is, it becomes easier to excrete the stuff in colored and spicey foods that were causing us problems."
It's my understanding (per Rosemary Waring) that b6 makes it worse unless one has enough magnesium, but I can't seem to tolerate supplemental magnesium for the last year or so either. FUN.
Pyridoxine or pyridoxine 5 phosphate and what level is considered toxic? The reason I ask is that in Australia at least a B6 test measures P5P. I had such a test ordered by a neurologist as part of investigations into OI. The result was 510 nmol/l, ref 35-110. I do have some mild symptoms which could be peripheral neuropathy although the neurologist found nothing abnormal in the various tests he did, nor did he consider the P5P test a problem (we didn't specifically discuss it since it was just one of a whole slew of tests - I noticed it myself later but wasn't concerned since I was deliberately trying to increase P5P to help deal with oxalate accumulation).
When I read this thread I remembered that test and have been trying to decide if it is something I should follow up. I was certainly aware that large doses of B6 could cause peripheral neuropathy but have never considered that I was taking large doses - though in the last 18 months or so I have taken largish doses (a mix of P5P and pyridoxine) which from reading the thread could definitely be problematic.
I can't say that the peripheral neuropathy-like symptoms have gotten any worse with the increase in B6 but still I am trying to understand the underlying mechanism to see if I should rethink the B6 strategy.
I have done a literature search but came up with nothing of any great use, certainly nothing indicating blood levels that might be considered toxic, hence my question to you.
From reading the thread, as I understand it, the problem is accumulation of pyridoxine, not P5P, so my blood test doesn't help in deciding if B6 toxicity could be an issue. I don't know if testing for pyridoxine is available here but it is certainly something I could chase up if necessary.
Any comment or further information from you would be appreciated.
I'm not sure how to translate the numbers, but I'm thinking our ranges were closer to 5-50 µg/L for normal. (but couldn't tell you what an µg is nor an nmol is... nor if the L translates to the l)...
I scored a 400. They told me to stop taking B6 (as you can imagine). I was definitively in the toxicity level. Even after my levels dropped into the normal range, I still had b6 severe b6 toxicity symptoms. But if I understand the basic terminology, they are testing the b6 in the blood levels. And that the idea is that your body should be able to break it down and dispose of the toxic load level.
AND that methylation is part of that break down and eliminate/use process. If methylation isn't working properly it's feasible that the b6 is getting stored somewhere and just not getting eliminated. Of course, I'm not going to be able to delve into the science of what that means.
I do know that the epsom salt baths and the methylfolate have consistently helped me when I experience peripheral nueropathy. So, they will continue to be my go to if I end up struggling with the b6 in the future again.
It's my understanding (per Rosemary Waring) that b6 makes it worse unless one has enough magnesium, but I can't seem to tolerate supplemental magnesium for the last year or so either. FUN.
I don't tolerate ANY magnesium in any supplement form that I've tried and my reaction to even miniscule amounts is so severe that I've given up finding anything that works.
I have found that epsom salt baths seem to help dramatically and it's basically a way to absorb (supposedly) magnesium.
Thanks for that.
So my results translate as 126 ug/l, ref 8.6-27.2 . The calculation is easy - a mole of a substance is its weight divided by its molecular weight (it is used because this allows us to compare numbers of molecules), so for P5P with MW 247.142, 510 nmol/l translates to 510 x 247.142 ng/l = 126,000 ng/l = 126 ug/l (a ug is 1/1000 g, a ng is 1/1000 ug)
So, roughly a little under a third what my levels were, but still well above range. That would account for the nueropathy symptoms being milder.
But as per my doctors ANYTHING above range would be considered toxic and worthy of avoiding or reducing b6 supplementation. Hopefully you could reduce and/or try detoxifying and see if that reduces (or not) the symptoms.
In my own experience, I started by eliminating it, tried low doses of P5P, and when symptoms returned eliminated that... I'll try again with tinier doses some day. I didn't find eliminating it helped my symptoms, but I was shocked by how much the epsom salt baths and methyl-folate DID and continue to help my symptoms when they returned. Of the two? The epsom salt baths seem pretty harmless. If they don't help, then maybe the symptoms come from something else... if they do help, but not 100% then you might want to investigate if you want to try to find out if you can tolerate (or not) small doses of Methylfolate to see if it helps as well.
Good luck.
I already use heaps of topical Mg both as sulphate (ie Epsom salts) and chloride as well as oral bisglycinate plus take heaps of methyl folate (plus methyl and adenosyl B12 and carnitine). Maybe this keeps things largely under control but not entirely since I am continuing to take B6.
I guess I'll have to stop the B6 for a while and see what happens.
Dr Walsh has written on B6 here, which may contain some useful bits:
http://www.alternativementalhealth.com/commentary-on-nutritional-treatment-of-mental-disorders-2/#B6
http://www.alternativementalhealth.com/commentary-on-nutritional-treatment-of-mental-disorders-2/#B6
TheChosenOne
Senior Member
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They are talking about doses up to 10000 mg. Most supplements have 10-50 mg.
So your neuropathy actually healed from b6 toxicity? I am almost positive that is what happened to me and I stopped taking it about 6 months ago, but still have horrible neuropathy and weird nerve sensations everywhere. It all started when I started taking b6, but I didn't attribute it to it. Later I took it again for a while and got much much worse. How long did it take for your neuropathy to resolve?
So, I know that I had neuropathy issues long before B6 toxicity was tested for and found. I know that it started after I started taking B6 and didn't get any better after I stopped taking it, nor after follow up blood tests showed the b6 levels as normal.
AND that it got better after I did some things. But, I obviously haven't ran a lot of tests with lots of patients, etc... so I don't know how circumstantial it all is. But I do know that after the last nuerologist suggested I needed psychiatric screening, I got mad and I decided it was time to do some research myself.
Time line (and the things I think that I did that helped)...
2004 - I had a PE (not-related), but was diagnosed with high homocysteine levels and told that I should take b6, b12, and folic acid (knowing nothing about anything, I took the cheapest forms which now that I know more about methylation and my own methylation-related genes... was a likely problem).
April 2005, I had recovered for the most part from my PE, but suddenly started to notice dizzy spells, numbness, balance issues, sensation, inability to sense temperature, and my fatigue started to worsen instead of improve.
By fall of 2005 I was in BAD shape and starting to see every doctor and specialist known... by January of 2006, I was bedridden for three months with vision, balance and loss of feeling (all doctors shook their heads in confusion). I did slowly recover my balance and get out of bed, but chronic pain, fatigue and regular dizziness was now a part of my life.
By the following year, my mother got diagnosed with B6 toxicity and it took 3 years of arguing with doctors to get tested for it myself; because "it was impossible for me to be toxic", only I was.
I stopped taking b6 immediately and within six weeks, my blood tests returned normal. But my symptoms didn't improve.
I learned about MTHFR and got tested; got educated and started ramping up Methylfolate at the same time I started epsom salt baths.
The chronic pain was IMMEDIATELY improved after my very first bath (though it does return after about 24-48 hours after the bath).
Within a week, I saw dramatic improvements in dizzy spells, numbness, balance issues, sensation and temperature sensing... within two those were gone (well, I get dizzy spells when my blood pressure drops now).
I attributed it to the methylfolate initially (but I think that was me discounting the benefit of magnesium)... but have since learned even more and found that magnesium is crucial in clearing out b6... so it may have been the baths instead.
re magnesium absorbtion in epsom salt baths http://www.mgwater.com/transdermal.shtml
Not they used really hot baths, but they also did research showing that they could use epsom salts held against the skin all day with a waterproof dressing, so the heat should not be necessary..
Not they used really hot baths, but they also did research showing that they could use epsom salts held against the skin all day with a waterproof dressing, so the heat should not be necessary..
PennyIA,
I find this fascinating. I have been taking b6 for over a dozen years now.
Quite early on I started taking multivitamins and b complex to try to make up for bad digestion.
I have just been looking at the ones I tended to take and I would have been taking 75 - 100mg per day for much of that time. 1 blackmores b complex and one swisse ultvite, for the Australians on the forum.
There was a period when I went even higher when my doctor recommended that I go onto 25mg b6 2.5mg b9 and 125mcg b12 for migraines in 2009. It was about 200 days (2 bottles) before I realised that I did not need additional b6.
There were also many days on which I took two multis.
Ouch. I want to write another word but ouch will do.
I started having issues with POTS and big issues with anxiety in 2011, but had been having issues with anxiety for longer maybe since 2008 or 9.
I had about a month or so with really bad POTS when I was really pushing methylation and taking a few b rites a day.
I am still trying to work this out but I started suspecting the the b6 might be related to my POTS a few weeks ago, and reduced then stopped taking b6. (and stopped the methylation)
But I also got to the point where I could feel that I had fingers. I remember how suprised I was about 6 weeks ago when I noticed this.
My onset/relapse in 2003 came with chronic migraine, during which I could not even feel a sunburnt face under a hot shower. The migraine drowned out everything, good and bad.
So the loss of sensation in my body was not a sudden onset and not feeling my fingers, unless they were in pain, did not seem strange.
But now I can feel that I have fingers, I cannot feel them individually just that there is something there.
Its a fluctuating faint signal at the very edge of my perception, unless I am pressing a finger against something.
I guess this should be different. I have forgotten what normal is.
Getting well would be a cinch if I was omniscient.
But it would seem that this lack of sensation could be related to too much b6.
I find this fascinating. I have been taking b6 for over a dozen years now.
Quite early on I started taking multivitamins and b complex to try to make up for bad digestion.
I have just been looking at the ones I tended to take and I would have been taking 75 - 100mg per day for much of that time. 1 blackmores b complex and one swisse ultvite, for the Australians on the forum.
There was a period when I went even higher when my doctor recommended that I go onto 25mg b6 2.5mg b9 and 125mcg b12 for migraines in 2009. It was about 200 days (2 bottles) before I realised that I did not need additional b6.
There were also many days on which I took two multis.
Ouch. I want to write another word but ouch will do.
I started having issues with POTS and big issues with anxiety in 2011, but had been having issues with anxiety for longer maybe since 2008 or 9.
I had about a month or so with really bad POTS when I was really pushing methylation and taking a few b rites a day.
I am still trying to work this out but I started suspecting the the b6 might be related to my POTS a few weeks ago, and reduced then stopped taking b6. (and stopped the methylation)
But I also got to the point where I could feel that I had fingers. I remember how suprised I was about 6 weeks ago when I noticed this.
My onset/relapse in 2003 came with chronic migraine, during which I could not even feel a sunburnt face under a hot shower. The migraine drowned out everything, good and bad.
So the loss of sensation in my body was not a sudden onset and not feeling my fingers, unless they were in pain, did not seem strange.
But now I can feel that I have fingers, I cannot feel them individually just that there is something there.
Its a fluctuating faint signal at the very edge of my perception, unless I am pressing a finger against something.
I guess this should be different. I have forgotten what normal is.
Getting well would be a cinch if I was omniscient.
But it would seem that this lack of sensation could be related to too much b6.
Fascinating thread! I also had higher than normal P5P in my blood but without supplementing B6 or P5P.
I concur with what RichVK thought in that this actually means P5P has trouble getting into the cells and thus this would indicate a functional deficiency of B6! I wish I had done an OAT test or easily could have one now but I can't yet.
I also couldn't take magnesium as it would aggravate my symptoms (depression and pain). I now am able to tolerate magnesium up to 500mg and I believe boron is crucial in being able to take it. I did need to up my intake of B2 along with the boron to keep being able to take the magnesium.
The mechanism that I think is at work here is that boron activates/raises alkaline phosphatase which is required to get P5P into the cells. Once P5P is inside the cells it can pull in the magnesium.
Another thing; I think that people who feel ill when taking B6 but ok with P5P might be deficient in B2 as that is required to convert pyridoxine (B6) into P5P (the active form of B6 used in the body).
One last thing; there's enough evidence to support the fact that whatever problems arise (neuropathy etc.) with excess B6 supplementation is actually the B6 inducing a B12 deficiency. Thus taking B12 completely solves any issues created by taking B6.
I concur with what RichVK thought in that this actually means P5P has trouble getting into the cells and thus this would indicate a functional deficiency of B6! I wish I had done an OAT test or easily could have one now but I can't yet.
I also couldn't take magnesium as it would aggravate my symptoms (depression and pain). I now am able to tolerate magnesium up to 500mg and I believe boron is crucial in being able to take it. I did need to up my intake of B2 along with the boron to keep being able to take the magnesium.
The mechanism that I think is at work here is that boron activates/raises alkaline phosphatase which is required to get P5P into the cells. Once P5P is inside the cells it can pull in the magnesium.
Another thing; I think that people who feel ill when taking B6 but ok with P5P might be deficient in B2 as that is required to convert pyridoxine (B6) into P5P (the active form of B6 used in the body).
One last thing; there's enough evidence to support the fact that whatever problems arise (neuropathy etc.) with excess B6 supplementation is actually the B6 inducing a B12 deficiency. Thus taking B12 completely solves any issues created by taking B6.
While I agree that B6 high levels in the blood may actually be related to not enough b6 that CAN be absorbed... and that it's definitely feasible that it can induce B12 deficiency, make sure that when you take B12 that you know what forms of B12 you can process based on the little bit we know about Methylation and MTHFR and other genes related to methylation.
I, for one, only got ill AFTER taking B6, B12, and Folic Acid (the cheapest forms found at the corner drug store after doctor recommendation). I tested positive for b6 toxicity after several years of no-answers and shrugs from doctors; and believe it was due to the inability of my body being able to process the form of B6 that I was taking. I was very ill with many of the symptoms tied to B6 toxicity. I'm here because I'm still not well; but for what it was worth? Taking cheap B12 (cobalamin); there was nothing there that would have helped my b6 levels. It wasn't until I started to take epsom salt baths before my b6 symptoms started to disappear.
So, I'll dig further into things as I'd like to take magnesium supplementation instead of epsom salt baths... maybe I can find the right supplement to allow me to digest it.
I, for one, only got ill AFTER taking B6, B12, and Folic Acid (the cheapest forms found at the corner drug store after doctor recommendation). I tested positive for b6 toxicity after several years of no-answers and shrugs from doctors; and believe it was due to the inability of my body being able to process the form of B6 that I was taking. I was very ill with many of the symptoms tied to B6 toxicity. I'm here because I'm still not well; but for what it was worth? Taking cheap B12 (cobalamin); there was nothing there that would have helped my b6 levels. It wasn't until I started to take epsom salt baths before my b6 symptoms started to disappear.
So, I'll dig further into things as I'd like to take magnesium supplementation instead of epsom salt baths... maybe I can find the right supplement to allow me to digest it.
Well, I'd look into boron. Like I said; I had high B6 levels in my blood. I have some very mild tingling in my left arm and leg. I don't recall dreams at all. I have pain on the right side of my stomach and back. Which I finally figured out to be due to a B6 deficiency. Yes, deficiency; a functional deficiency. That might not be the end of it though as that probably was caused by a boron deficiency!
I could only tolerate magnesium when I started taking boron. I could only continue taking the magnesium by also adding in B2 and B6 (boron works together with B2 and B6 to do its job). Now I can take the magnesium without feeling depressed or raising my pain. Before taking boron I would even have an aggravation of my symptoms even if I only took 30mg of elemental magnesium in malate form!
If I'd know your address I'd almost send you a free bottle of boron to try
I'm convinced that a lot of people who can't take magnesium and have already tried taking everything else like B6, selenium etc. are missing out due to a boron deficiency.