B6 (pyridoxal phosphate) levels very high in bloodwork
I have been tested twice recently for B6 level. My first test two months ago indicated a 156 level with normal range being 20-96. My second test indicated at 283 level. My physician has no idea what this means and if there is a problem. I am concerned that there is a toxic level of B6 and I should be doing something about it. I'm not talking anything except multi-vitamin. I've been concerned about my health for some time as I'm quite fatigued, anxious at work, balance issues (the term lightheaded would be the closest) eyes are sensitive to light, have trouble focusing on people when they talk, and have a few other issues like trouble concentrating, sense of smell has been gone for years and my sense of taste has been affected for quite some time as well. My skin is quite raw on the knuckles and I think I have psoriasis as well as my nails are pitted and raised. Not sure what is related but I definitely feel that there is something physicially wrong with me and this high B6 level has been the first thing to come up as being something worth pursuing. Any help would be appreciated.
I just had the exact same thing happen to me. My level was quite high. The normal range was 5-30. Mine was 100. All I was taking was a multivitamin. I hadn't even taken a vitamin for 24 hrs. when the test was run and it was fasting.I have numbness, tingling, twitching, weakness, balance problems. I have had extensive work-ups for MS... all negative. No can find a cause for my symptoms. I see the neuro next week and will talk with him about it. I hope you stopped the multivitamin.....B6 is water soluable so it should not build uppp in the system. I personally feel it's a metabolic problem causing us to retain it????? Let me know if you learn anything new.
Thanks Patsy...anything you find out about this would be much appreciated. I know that deficiency is an issue but 'm definitely concerned about excess/toxic levels being an issue as well as there is definitely something causing this. I know that there is something off with me right now and this is the first thing that's come up that may be a clue. Hope the neurologist is able to give you some info that helps you. Cheers
This is the first thing that has come up with me too. I googled toxic b 6 levels and it said it causes numbness, tingling, trouble walking, balance problems. I have all of this. It also said it can take 2 to 3 YEARS to resolve. Everything else is normal and I am a wreck as well. I stopped my multivitamin a few weeks ago but don't feel at all different. I think the elevated B6 level is some type of metabolic problem where our bodies can't excrete it. I see the neuro on Tuesday. I'll update you with what he says.
interesting...that's helpful (lol)..or not. I find it very frustrating to see what elevated B6 can do, yet no physician I've spoken with can provide any details. I'll keep searching and should I get any answers I'll let you know. Very bizarre indeed. Take care and keep in touch.
I also had my b6 level come back at 75 and it was 60 in January. I have some of the same symtoms numbnesss in arm and foot and muscle twitches everywhere and hard to focus as well as headaches. Some balance issues seems lately or just my feet don't feel as strong as they used too. I have had 7 mris 2 brain 2 cervical 2 thorasic and 1 lumbar also Evoked potential test and 5 emgs. No signs of ms or als or anything like that I have been worked over completely. Also I have started a tremor in my hands but not a resting tremor. Neuro is of no help and will probably end up at the Mayo clinic. I just got off all my supplements 2 days ago and am going back to the doctor next week to have it tested again. I also had a metabolic specialist look at may amino acids and said there was no evidence of metabolic syndrome. Anyway I would love to keep in touch and see if we can help eachother out with our doctors responses or test etc. I am a 38 year old female and my symptoms started about 1 year ago. thanks so much
check out what other products (foods, drinks) you may be consuming that have B6 in them. Some of the sports drinks have the Bs in them. The food supplement industry is not tightly regulated and some manufacturers are better at controling their products then others thus it might be that you are taking supplements that contain more B6 then the label indicates. It may take a while for the damage to heal just as it does in cases of deficiencies. Check out the Linus Pauling website for information on vitamins. He was a Nobel Prize winning Chemist that really studied the vitamins.
About 3 years ago, I started having some toes go numb; then last summer I began to limp and had small red dots on the bottom of my feet especiall my left foot. I had several blood tests, went to a number of specialists and then finally to a neurosurgeon. She confirmed neuropathy but could not tell the reason. My doctor called Hopins where after a thorough testing - blood and electrical - I was told that I had b6 induced neuropathy. He said it was commonly known that excessive b6 causes neuropathy! Not in my area. "Stop taking the supplements," he said. I was taking Centtum which has 150% of the daily value. My blood reading was 66 in which 5-23 is normal. I suffered through the toxicity which lasted about 2 to 3 months and am down to about 11 now. I still have the glove and stocking feelings, still have some balance problems, along with insomnia ( Tylenal PM helps), plus many other symptoms. I read where the sheath around the nerves which the pyrodoxine (b6) has destroyed grow back 1 millimeter per day( that's 1 foot per year). I find comfort in reading scripture and have an understanding wife. I would be glad to help anyone else.
I think your blood level could have been right. The level in the blood comes down real fast, but the problem is the B6 that is in your tissues that does the damage. For some people there is a metabolism problem or maybe the liver is not working right, or because of other medications. The liver needs to add a phosphate molecule to the B6 for proper use. If this does not happen, the pure B6 is floating around and is toxic, thus the tissue damage.
Does that mean that you went back on your vitamin?
Interesting what you said about the b6 is stored in the tissues. I have stopped all vitamins as of three months past but still have symptoms. They have changed tho. Before, it was all numbness, tingling, burning pain. Now it is more achy pain and some feelings of weakness. I wonder if my nerves are healing and what I can do to encourage the healing. My levels were 136 and i was only taking a prenatal vitamin and a packet of E-C every day. (I am breastfeeding a baby).
I just saw this post today. Thanks for the info. Nobody ever bothered to recheck the level. I recently started back on my multi but I bought an inexpensive one from Wal-Mart instead of the expensive one I was on.
Wow, I am so glad to read all this (but of course very sorry for all of you with problems with this). I had B6 toxicity about 5 years ago. I was taking a B-50 every day for about a year. It started with a few numb toes, then numb fingertips, then odd acne, then numb face and nose (scary), and when I noticed I couldn't really feel inside my stomach anymore, I flat out panicked. I went to a neuro and had a full workup, and like most of you, they found nothing at all. In his mind, that was good news, but I really thought I was dying. Oh, and I also had tiny red spots on my arms (called petechiae). When I quit the B-50, within a week I started noticing food was tasting REALLY good, and I was salivating more. It was SO noticeable that I realized somehow stopping that vitamin had a huge effect, not matter what the neuro or anyone else said. I had little pins and needles and very odd sensations off and on, and in weird places, for a few months. Parts of me would feel cold, my backside would go numb while sitting (bizarre), arms would feel tingly - but it never moved around like MS is supposed to, and that had been ruled out anyway. I found that eating red meat and garbanzo beans made numbness get worse (my test area was the side of my face right outside my eyes). Being sick make it worse temporarily. Serious exercise made it much better for the next day. In fact, THAT was the single clue that convinced the neuro I was right about the cause.
Prior to stopping the B50, the estrogen patch and switching from Tums to Viactiv (for calcium) made it (numbness) worse, and if I exercised hard, things got better. In retrospect, all those clues made sense. Exercise leaches B6 out of the muscle tissue (where it is stored), so it can get flushed. Estrogen affect B6 in ways I don't fully understand. Tums made it harder to absorb the B6 in the vitamin pills, but Viactiv did not.
Fast forward to 5 years later. Have hope! I feel normal now, though I have to admit it really honestly took a couple of years. I found that keeping a diary was really useful, because after a few months, you notice improvement VERY slowly, and you need to be able to look back 3 months to notice it - otherwise you get depressed. None of you sound nearly as bad as I was, and hats off to you for figuring out the problem before I did. :-)
I still have times when my toes get a little numb, and when that happens I know something is out of wack. I went on a diet, and tried to take their daily vitamin, and within a few days noticed numbness coming back. Oh, I also can't take Lipitor (a Statin) since it also makes the numbness come back.
I wish I'd had my B6 levels checked before I stopped the B50, but I didn't. The half life is pretty short, so if you stop whatever is bringing them up, they should come down quickly. But the damage takes a long time to improve.
Someone suggested that I take Pyridoxal phosphate, which is supposedly the more natural form of B6. I tried that and found it completely useless, so I can't recommend it. It was also suggested by a not so reliable source that B6 and B12 need to be balanced somehow, so I've been taking B12. I can't honestly say if it helps or not, but I think it might.
I'm sure I've forgotten a lot. If you have specific questions, maybe I can help. This is such a weird thing, with no real medical support, it's frustrating. Hang in there!
Hi. It's none of my business, but I read that you started back on a multivitamin. If you still have symptoms from B6, you might want to just stay off the multi for a while, or take 1/2 per day. 5 years later I still can't take a regular multi (with 100% of everything), without problems. For the first year after quitting B6, I couldn't take ANY multivitamin at all.
I still don't understand how one can become so sensitized to the stuff. Bizarre.
I noticed your comment about insomnia. I did have a phase where it was like my adrenaline was pumping ALL the time. I'd wake up in the middle of the night with my heart racing, and it was not a dream or anything like that. I'd go to sleep with it racing, and wake up that way. As you can imagine, it was dern near impossible to sleep. I was also cold, like a cold sweat. I havent' seen THAT documented anywhere as associated with B6 toxicity, but it is yet another symptom that completely disappeared when I stopped the B50.
Here's some links for anyone interested. It's the best info I've found online for B6 tox.
http://www.food.gov.uk/multimedia/pdfs/evm_b6.pdf (see Dalton study summary, pg 87)
Thank you for the valuable information on b6 toxicity. It is so reasuring to hear that others such as yourself have experienced what many health-care professionals are unaware of. My "electric shocks" along my back and shoulders have been replaced by a constant throbbing. The "vibrations" around my eyes, nose, and jaw are not as bad as before. A couple of weeks ago, I bit down on a nut and felt a pain in one or some of my teeth. The dentist said the nerves had been crunched, but the pain should go away after a couple of weeks. I hope so. I have wondered about the value of exercise. When I exercise, I get pain in the knee and pelvic area which I treat with advil or Tylenol, or else I can not sleep due to the nagging pain. As you said, the symptoms fade slowly. It has been almost 10 months since I was diagnosed, but I had experienced numbness years before. I too was taking a multivitamin. Much of what you shared has been encouraging, and I thank you for that. Thank you for the web sites also. Principal.
I was just diagnosed w/ B6 Toxicity and the symptoms really scared me, especially not knowing what was going on. All I was taking was one Centrum Multivitamin daily, nothing else. I'm wondering if it has anything to do w/ their new formula as I've been taking this vitamin for years now w/o problems. I suspect my symptoms began after taking the new formula. Anyone have any similar experience w/ this particular vitamin? So it's been about 3 days since I've stopped the vitamin. From what I'm reading here about the slow and long healing process I'm pretty bummed but atleast there's hope, right? I've been wondering if exercise does actually help as all I've been doing is sitting around for weeks now as I've also been experiencing the fatigue, weakness, numbness & tingling, etc. Not to mention feeling very depressed. What types of foods/drink seem to help you feel better if any? I'm almost afraid to eat anything as it might make me feel worse. Any tips, advice will be greatly appreciated. Thank you and hope you're all feeling much better now.
i have found that almost anything stressful, being sick or not getting enough sleep makes my symptoms "relapse". It has been ten month since my second bout of B6 toxicity (the first time was on a mega vitamin, the second time on a basic prenatal). Also, have your B12 levels checked. My were very low, which can also slow the healing process. Strange that I had too much B6 and not enough B12. I have no idea why this happened. I am healthy, young and active. Although, the past two years have been rough and due to the toxicity, I have not been my usual self. I also had a baby during this experience and that was doubly hard.
I have never blogged but I’m happy to find this. I have been having problems for about six months now. First I had a nerve problem with my big toe and that has resolved itself after staying off that foot for about two months. The other symptoms, tingling etc., started about the same time and were in both feet. After several doctors and many tests that ruled out some pretty bad stuff I have been diagnosed with B6 toxicity about two weeks ago. Now I have been trying to figure out where it may have come from and one place was a change in my multi-vitamin. The one I had been taking had 2mg and the new one from GNC has 25mg for a single dose which is two capsules. I had only been taking one which gave me 625% more than I had been getting in the Centrum I had been taking for years. I feel my diet is good enough I don’t need a multi anyway so that can go away. I have felt a little better since I stopped taking my multi. I like the idea of keeping a journal since healing is so slow. I just keep looking at my diet changes and vitamin intake changes for the past year to see if there are places where I’m getting a lot more B6. I go see the doctor tomorrow and then I find out how high my B6 was when tested. I guess there may be something else going on that is causing my body to retain the B6. Hopefully I will find out more tomorrow. Thank you for the advice to exercise. I will be back to my water aerobics since that seems to be the only thing I can tolerate right now. I did almost nothing those two months my big toe was slowly healing. Since no one has written on this site for awhile I hope everyone is better. Thank you, NMK
I was diagnosed with Fibromyalgia several years ago.....seen lots of doctors. My new primary Dr. had my B6 tested 2 times now and was higher with 2nd test, not sure what my count is, but will ask her tomorrow. She is unaware of what to do......Fibromyalgia symptoms are very much like elevated B6 symptoms. I'm in alot of pain though and am not sure this is related to B6? .....I am happy to have connection to this site and I will check in often. Jeanne
I've got Celiac Disease and was recently tested again for various things, including B6. Mine is high as well at 47. I do have tingling and swelling in the right thigh and hip and the doctor says it's neuropathy from the Celiac but never mentioned the effects of high B6. I'm going to go off the multivit with Bs and try to eat less red meat. Thanks to this blog, I've got some answers. Thank you to everyone who shared their stories. They all have a similar thread, don't they? If anyone ever finds out why the body is storing this, can you please post so that we can take this to our doctors or take it into our own hands......like most of us do.
Hi, my b6 level was 107 two months ago. My hads are swollen, my lower legs are tight. I do have numbness in the top of my feet. Many of the other symptoms you all have. My docotor didnt seem bothered by it. so i called my health food store where i get my vitaims he said stop taking them that the b6 level should go down fast. i will have it checked in about 1 month again. I am not over weight, i eat good. I will be turning 50 in april. but i do have basil cell carsinoma which is skin cancer from to much sun it is on the side of my nose, i go in next week to have it removed. I will ask about the b6 level with the dermatologis. i have stopped my vitamins. Do any of you take herbs?????? I do, let me know please.
I am so thankful to have stumbled on this conversation! I thought I was going mad or had early symptoms of MS. For a year now I've had increasingly numb and tingly feelings in my feet, fingers, up the legs and eventually in my arms. I've had severe muscle fatigue, muscle trembling, restless leg so bad my leg spasms on its own. I'm anxious and tense, have terrible spells of low blood sugar, and can't concentrate. My doctor's solution was to recommend an anti-depressant, which I politely declined. The last of my test results came back and I'm low in vitamin D and abnormally high in B6. I googled "high B6" and found this site where, amazingly, other people described in detail what I've been going through for a year! I've been taking prenatal vitamins and drinking Ensure or a protein shake daily. Obviously, I need to stop taking the vitamin, but am worried about keeping up my other levels to prepare for pregnancy.
So glad to find this site. I've been going through the same symptoms (tingling of hands and feet, numbness, etc) and have been checked for every awful disease. Luckily, ended up with a neurologist who suspected B6 and just got my blood results...I'm at 98. It was so nice to find this site and hear how others feel (though I'm not thrilled about the recovery time). I also had a "multi-vitamin switch" to high levels of B6 (30mg) though all the vitimin sites claim that is nowhere near a toxic level. Also, my systems started before the switch so I think that the extra B6 may have only exacerbated the problem, not caused it. I see my neurologist next week to follow up the tests. If he has any new information I'll post it
so i have had tingling, numbness, muscle twitching, and weird reflexes for eleven months now. The doctors finally got around to checking my b vitamins just this month even though I have been to see them several times when it first started. The neurologist did a nerve test on me and said the results were some what abnormal for my age. My b 1 was low and my b6 was high. He said to come back in 3 months to retest my blood levels. Shouldnt he be trying to treat the b 1 deficiency because who knows how long I have had this deficiency??? He said i shouldnt worry too much about it but it gets worse every month.
I just want to suggest this to all of those posting here. If your treating physicians are unable to determine the cause of your high levels of B6, please consider seeing an endocrinologist.ALTHOUGH MY HUSBAND HAD DIFFERENT SYMPTOMS, he did have an elevated B6 level as well as many other symptoms which proved to be due to a rare metabolic condition. After seeing so many doctors including a psychiatrist, it was finally diagnosed by en endocrinologist. So if you are all still struggling without answers, please consider this. He suffered for so long before someone diagnosed his condition. I would never want anyone to experience the frustration and depression of dealing with a condition that can't be explained. MY BEST TO ALL OF YOU.
hi just to let you know, i started burning in my feet bad bad bad a month ago. and then it moved on up my legs to my knee. and then between my shoulder blades and hot spots in my right breast an my toune feels like it burns. and my bottom burns like a kedney infection, had it checked and no kedney infection. my b6 came back hi don,t know how high yet go to doc wed 16th feb. i have been taking multi. vit. too plus d,c,cq10,e,fish oil, i thought you need these to stay healthly. but i feel like i am going to die. i feel like i have been poisoned. this burning i so bad some time a cold burn and next time a hot burn. i have had alot of pain for 33 bad back, but this worser than anything i have ever had. i sure wish some one could help me. and by the way all foods has b6 any thing comes from the ground. the water you drink probley does to. some foods are higher like meats. i just don't know what to do.
has anyone ever heard of probotics elevating B6 levels? I was treating myself for Candida with antifungals, successfully reduced my levels, but felt no better really. I have had headaches for 15 years. The past two have been the worst with swelling, pressure, barometric induced, especially blood vessel throbbing around my nose and eyes. hard to focus, the pressure really draining. My B6 level is at 655. I stopped taking everything. I'm hoping it will come down on it'sown. By the way, I never took B supplements, just some adrenal support. Any advice would be appreciated
I've had fatigue and weakness for over 6 months. They've ruled our cancer and I just got my blood test results back and my b6 is 106. I take a good multi as well as a b supplement and I drink an energy drink that has b in it also. As much as I like the drinks effective immediately I am stopping the b supplements and the energy drinks. I see the neuro on the 13th of March. I was going to the gym and 3 days a week and running 3 days a week as well as many other activities but I had to quit all of them.
So glad to have found this site. I have high B-6. The doctors tell me that they have never heard of this before. I have: horrible pain in my legs, that has now gone up to my arms. My muscles are so sore, there are days noone can touch me. I am so tired I can hardly make it thru the day. I feel anxious most of the time, trouble concentrating, HORRIBLE HEADACHES, insomnia, balance issues, I am smelling things no one else in my house smells and most recently am short of breath. I DO NOT TAKE SUPPLEMENTS OF ANYKIND, (have not for many years)! I have seen 5 Neurologist (one being from Bethesda and one from Duke). The one from Duke thinks I MUST be taking supplements. I have seen so many doctors. I am now seeing a Rheumatologist from Duke. Really like her. Just got my results from her and my B-6 is still high. Everything else seems to be just fine. I have been told that if I was younger, I would have MS----as you can see that would have been a misdiagnosis!!!!! I do not drink Energy Drinks, eat massive amounts of cold cereal, or any thing that might contain B-6. I read every label. If anyone does not take VITAMINS and has high B-6, please contact me and let me know what you are doing to get rid of this from your body. I am desperate for any type of help. By the way, this has been going on for 4 years. Thanks for any help you can provide.
I have been suffering with severe right foot pain for 6 months along with both calve muscles always tight and charlie horses in the middle of the night sometimes 2-3 times a night. I feel tired most of the time and fall asleep quickly whichis not my norm. I have had low energy level still lift weights 3-4 times a week and had to stop the elyptical workouts 4 months ago due to the pain in my feet. The big toe is very painful with sharp needle type pain, arch feels like I am standiung on a stone all day, tingling on the right side of my face and numbness at the ends of all my fingers. I just found out today that my level was 278 and should be 110 or less.
I am 28 years old, and have had a lot of stress in my life for the past 4 months or so. My father had a stroke on May 3, 2012. I was with him everyday for the first three weeks. I started to have this burning feeling in the palms of my hands, I thought it was all stress related. It would only happen right before I would go to the hospital. I looked it up, I thought I needed more b vitamins. So I started taking B complex, a muli and about two - three times a week I would take Emerg-C with more B vitamins in them. About a month ago, I started to have pins and needles in my left leg then it went to my left arm, right around the time a really good friend passed away. I needed to get annual woman exam so I asked my doctor to pull a vitamin blood test on me. My blood always looks good, so I was not worried. When I got the results it said I have a 57.3 B 6 level Normal range is 2 - 27, everything else was fine. When I asked the doctor she said she had never heard or seen this before. She suggested I go to a hematologist to get my blood looked at more closely. Which hopfully I can get an appt within the next few months. I asked my Chiropractor about it, she thinks it is all due to my really high stress levels. I had to take my dad to my General Dr., and I asked him what he thought. He said, because I sit at a desk all day and cross my legs that it is what is going on with me, and not to worry about my high level of B 6. After reading all these posts, I am getting a little scared. Since the birth of my last child, I have had problems remembering things, I thought it was because I am so busy, but maybe it is something else. It has been 5 days since I stopped taking all vitamins. I almost feel worse. I am a very nervous person, knowing that I have high B 6 levels stressing me even more. I am getting my blood tests retaken in about two - three weeks. I will post then...
Finally I found others who are sharing the same frustrations as I am. 6 weeks ago I started with burning feet. The burning is so severe and has traveled all over my body. I too have seen neuro muscular drs at the Cleveland Clinic. My B6 is 414.4 and the Dr. doesn't seem to think that's the problem. When I ask what he thinks the problem is, his answer is "I don't know". I took a supplement that contained 5 mg of B6 which typically would not cause B6 toxicity. I will see about getting my levels rechecked. So, if my high levels are not caused by the supplement, has anyone found other things that can cause high levels of B6. I realize it may take a long time to heal the damage that has already been done; I just don't want to be doing something thats keeping the B6 levels high. What other metabolic conditions could be causing this? Any ideas?
I just wanted to tell you that I have an incredible neurologist that checked my b6 levels after hearing all of my symptoms.. all I was doing was taking supplements..not much b6 at all to be honest.. and my levels were as high as yours. After much pain and many many dr appointments with various specialists, I found it hard to believe that I would begin to see my symptoms go away just by stopping the vitamin - but I did. Day by day I started returning to my normal (pain free) self.
If your dr says that those levels are okay then you need to switch to a different doctor. I promise you that stopping the supplement, even though you do not think it is much.. WILL make your body restore itself. It does take time.
My neurologist said that is blows their mind that b6 is even sold over the counter simply because of how toxic it can be to our bodies.
Hi guys I am 20 years old, and been experiencing some anxiety, tremor, spasm weakness and sometiems fatigue with no abnormal blood and liver tests but have HIGH b6 levels and little low vitamin D.
My question for everyone is DO YOU GUYS SMOKE CIGARETTES ?
i go to college and i found a research trough my school's library where you can' t find online that talked about tabaco having a great effect on bodys b6 dependin on the person, i have quit smoking and waiting to see what happens, my symptoms have gotten better since after 3 months but still exist. b6 level is 93 (max 21.7) vitamin D is 23 (min 30)
Hi I can totally relate to you I have been going out of my mind for the past 14 months thinking I have MS. Although all my tests came back perfect and my nearologist has reassured me many times I don't but I have pins and needles all the time tremor vision issues and the list go's on and on. After going to several doctors I just got a full blood count and my B6 level is 65. I was taking several suppliments, I recommend you go off any with B6. Some are still fine to take but def not the B6. I know how scary it is as I have been living with this nightmare everyday so I wish you all the luck in getting better really soon
What helps me is increasing my b12 levels. Because i have a b12 malabsorption i got b12 injections and this improved my problems for a few days so instead of injecting b12 every 2 months, i now started a schedule of twice weekly on which is rapidly improved. As it becomes time for the new shot i feel less which again improves afer i have my b12. Although my docter does not see the link and does not support this, i read that there is some sort of competition between b12 and b6 which can explain my experience. Interestingly, people who are supplemented with b12 have decreased levels of b6 for which they need to be treated so why not try it the other way around, use b12 to decrease b6, it is definately helping me.
Hi, yes, I too have been diagnosed with Vitamin B6 toxicity and have never taken B6 supplements except 3mg in a multivitamin that I stopped about 7 years ago. I started having neuropathy in my arms in the mid 1980's, then I got Raynauds, now I have it from my knees down into my feet. I also have a problem with a fast pulse and an irregular pulse as well as exceptionally dry eyes and skin. For a couple of years now I've been gluten/dairy/sugar free and have never eaten processed foods like cereal, etc. and only eat out about once a month and order something very simple. For years I blamed the beta blockers the doctors put me on, as a new problem would start up soon after starting the beta blocker, but can't find any relationship between the two online. I had such severe side effects from the drugs that the doctors would switch me to another type blood pressure pill for a while, but because of the fast and irregular pulse they would put me back on the beta blocker. After being tested to death (all negative) by a cardiologist, he took me off everything and I feel much better, but the peripheral neuropathy persists. I was referred to a neurologist who did a lot of tests and was the one that found the toxic B6 levels, but he can't find any reason that the levels should be that high. Toxic levels of B6 can cause all the symptoms I have, but no one can come up with a way to bring it down or determine why I have it, so I'm in limbo right now as well.
I too have the same symptoms, burning feet and now hands. I had high B6 back in July 2010, it was 98. This past August, down to 20. However, the tingling has gotten worse in the last two weeks or so. I suspect the B6 level may have raisin. In my past, I too took multi-vits and also drank energy drinks daily. Stopped both.
Based on the posts here, I searched how to lower B6 and came across this website.
I see at least one post said exercise helped decrease the symptoms. Anyone else experiencing the same?
I have a friend desperate for answers on how to lower B6... her count is 960... her symptoms are extreme she is totally bed ridden at this stage and the Dr's do not seem to be too concerned about the B6 count they obviously know very little about it ... they just keep going on about her imagining her symptoms..BUT i know she isnt the poor thing....
Please what has helped you?
the balance issue has made it impossible for her to function to get up and walk anywhere.. and the adrenal rushes during her sleep of course frighten her. she has all symptoms mentioned here
Early last year, I began having neurological symptoms. They included tingling in my arms and legs, weakness and feeling tired, muscle cramps, small muscle twitches, and tremors that seem to be related to muscle weakness. All these symptoms came on gradually over several months. I eventually also started having trouble sensing acute pain, heat and cold but I can still feel normal touch. At times, I also feel as if a tourniquet is around my left arm and leg.
My brain MRIs appear to be the most significant evidence of disease other than my symptoms. MRIs show around 30 lesions/plaques in the white matter of my brain. Two small enhancements were seen in the first MRI but a second MRI, interpreted by a different radiologist, called it a "phased artifact".
I have seen 3 neurologists specializing in multiple sclerosis and several radiologists have reviewed these MRIs.
One doctor and three radiologists think I have multiple sclerosis. Another doctor suggested I had acute disseminated encephalomyelitis (ADEM) and a third doctor calls it nonspecific encephalopathy. My spinal tap and other tests were negative for MS. Lyme disease tests are negative as well. I have other tests done but most show nothing.
Another test I did recently shows I have high vitamin b6 levels: 86.3 ng/mL (range = 2.1– 21.7). Could there be a correlation between the MRI results, symptoms and out of sync B6 levels? Do folks on this thread general think they are experiencing metabolic issue with b6? I was only taking 12 mg a day (have stopped now.) If so, are there any known ways to address this? I can't even seem to find a toxic b6 blood level.
Because of this uncertainty in my diagnosis, I have not been able to receive any treatment.
I would appreciate any ideas you might have on a possible diagnosis or if I should pursue the b6 issue.
I also have celiac and was taking a generic vitamin pill. Because of numbness in the center of my back I had an MRI and the doctor took a blood test for Vit B6 which was 156. I am now off the vitamin and anything else that has the ingredients Vit B6 in it. Many of the drinks for rehydration did ...found it out when I went to get some because I was having diarrhea. Anyway, Neurologist doesn't know what is causing it. Hope you are feeling well now. I have been off Vit B6 for three months, but still have the same numbness.
I also have celiac and was taking a generic vitamin pill. Because of numbness in the center of my back a I an MRI and the doctor took a blood test for Vit B6 which was 156. I am now off the vitamin and anything else that has the ingredients Vit B6 in it. Many of the drinks for rehydration did ...found it out when I went to get some because I was having diarrhea. Anyway, Neurologist doesn't know what is causing it. Hope you are feeling well now. I have been off Vit B6 for three months, but still have the same numbness.
I am not a regular on this forum, but as I read the symptoms many are experiencing I would like to offer some advice. I am not sure how to get it out to the larger group, but hope if you find what I am writing to be credible, then maybe you will take care of that. Many are suffering from Hypo and Hyper thyroid disease and don't know it. The TSH test that doctors typically rely on is useless. The TSH test tells you your gas tank is full or empty, but full of what? Could be water...car doesn't run on water. It does not measure what is happening at the cellular level within the mitochondria. To determine the thyroid condition there are many factors to consider; blood workup (Chem 26 to start - where are the T1/T2/T3/T4 and reverse T3 levels), parasites in the gut (yes, they are competing for the same nutrients you are), Adrenal fatigue, yeast in the gut as a result of overuse of antibiotics (they kill everything - good and bad bacteria), glutein issues and nutrition. I believe the symptoms of elevated B6 and symptoms many are experiencing are connected to some or all of the things listed above. I am not a medical doctor, but have done a lot of research. My recommendation - get away from traditional medicine and seek out a good integrative medicine doctor. Look up Dr Broda Barnes/Dr. Andrew Weil/Dr. David Brownstein/Dr. Kharrazian. These are great resources. You need to take your health care into your hands and find a doctor who will listen to you about your symptoms, not just throw the medical rhetoric or prescriptions at the problem. Often times, heal the gut and the patient recovers. We are what we eat.
I had major surgery in October 2012--a transduodenal sphincteroplasty which permanently sewed open my biliary and pancreatic sphincters as I suffer from Sphincter of Oddi Dysfunction. About two weeks after surgery I developed an Enterobacter sepsis infection, my adrenals failed on me, had a 106 degree temperature and was given Levaquin and hydrocortisone. Since then I have had severe nerve and tendon/joint pain and all of my b vitamins (b1, b2, b6, b9 (folate), and b12) have been elevated over the max range. I never had these particular symptoms in my life before then. I am always tired which I attributed to my adrenal insufficiency (am almost off the steroids). I have thought the nerve and tendon pain was from fluoroquinolone toxicity. Has anyone else been on a fluoroquinolone antibiotic like Levaquin or Cipro? Anyhow, I see an endocrinologist, a nutritional MD, gastroenterologist, rheumatologist, neurologist, family physician, surgeon, and not one of them can explain the reason for my pain or elevated b levels! Maggiemae1952--what did your husband's endocrinologist diagnose him with? I don't take vitamins and just want a solution!!! I am currently being treated for small intestine bacterial overgrowth (SIBO). This could be the key as b vitamins are supposed to be metabolized primarily in the lower part of the small intestine. Help!
In September of 2012, I went to the Hospital because of muscle weakness, muscle twitching, and muscle wasting. Later in May of 2013, I was diagnosed with ALS. But, I am unusually young to have ALS and I think something's not right.
My point is... all of my test results (about 85) were perfect except for two.
Vitamin B6 Level was 384 (normal range 20 - 125)
Vitamin B12 Level was 1,850 (normal range 180 - 914)
The doctors had no explanation for the extremely high levels.
I rarely eat meats and I don't take B supplements.
So I was wondering, Is my "ALS" really a B problem?
Has this happened to anyone else?
I just found this site and I have been reading the older posts. I don't have the time right now to continue reading. I have had two blood tests with very elevated B6 levels, in the 300 range when normal was up to 90. I have digestive issues, looked at wiki and it said where the B6 is absorbed in the digestive tract. I'm wondering if I'm not absorbing it and it's staying in my blood stream causing trouble. I have leaky gut, and irritable bowel. Have had trouble with my digestion for a long time. I wanted to post this about digestive issues, wondering if anyone else has had that in combination with the elevated B6. Have to go but I will come back and post more about my past symptoms in the next few days.
I have just fallen across this page. I have most of the symptoms mentioned and have been diagnosed with HYPOPHOSPHATASIA. It is classified as a metabolic bone disease and is ultra rare, few doctors have heard of it. Do not confuse this with hypophosphatemia that is completely different medical problem. HYPOPHOSPHATASIA is a genetic condition whereby a bit of gene number one is missing which means you cannot make enough of the enzyme ALKALINE PHOSPHATASE, or that which you have is not functional as I understand it. This is easy to check. Lack of alkaline phosphatase explains the high B6 as B6 is PYRIDOXIL 5 PHOSPHATE. Without the enzyme you cannot metabolise phosphates in the body, therefore the B6 is not processed, you may even have symptoms of deficiency. I too have leaky gut, IBS, allergies, muscle weakness etc etc! Usually people present with bone fractures, typically metatarsal fractures of the feet are affected & of the femur.
I just got my blood work and I too was told that my B6 and b 112 is high. this is my first time. I was just diagnose with fibromyalgia. I have pain all over sometimes it is my back or my hands, or my shoulders or any part of my body. I am embarrassed to asked for prayers because I am always in pain. I was finally told I have fibromyalgia. and now is in the process of fixing my medication. my latest problems is constipation and bloating. Help me is you have any insight or solution please.
Thank you!! To all of you thank you! I feel like I have somebody who can sympathize/relate how I feel now. My B6 was over 175 and I hadn't taken supplements in over a year. My neurologist said that was the only thing wrong with the 17 tubes of blood they pulled and ran. I have had debilitating neuropathy, crawling skin, numb spots, muscle pain, fatigue, tremors, insomnia, spots in my brain on the MRI with no diagnosis, I can go on and on but it sounds like you all know how I feel. I have had these symptoms that have been increasing for over a year with a remarkable increased of pain in the past month. My doc was very surprised that I hadn't taken any multi vites in a long time and suggested that I start at my age completely dismissing my b6 levels as a fluke. I took his education to heart and started taking a Pre Nat vit about 1 month ago. I sit and read all of what you are talking about and can kick myself for starting a multi vit and recognize that my upslope in symptoms coincide with the start of the supplement.
I'm going to look into what foods carry a high level of b6 and see if staying away from it helps my symptoms subside.
Talking with my fiancé he was wondering why I was so upset to not have a diagnosis. My reply is if I have a diagnosis at least I can find a support group of others who are suffering in the same manner. I know now that there are others out there who are suffering the same as me, I feel like I have a home.
I too have been diagnosed with SIBO now for about 8 months, and IBS for 20 years. My B6 is only slightly elevated, but I still experience the numbing pain/high anxiety/racing heart esp a night/ tightness in arms/neck/lower back. Off all supplements except mega vitamin D (5000-10000 IU daily), and this DOES help!! I also take Green Pastures High Butter Oil/Fermented Cod liver oil, and I tell you, this combo with the Vit D has really helped me to feel better, but I still have bad days of fatigue and gut issues. I also think the gut is the main component in all of these B issues---bad malabsorption of nutrients I would bet!!!!! I am ready to heal my gut! Been on low carbohydrate/no wheat/low sugar/low FODMAPS diet, and this has helped tremendously! Going to take the advice of others above and get back into EXERCISING!!!!! And, I might add, I try to visit my chiropractor regulary, even though my insurance doesn't pay for it, but I tell you, this also has made my back/arm /anxiety symptoms go way down when I keep up with it!!! I am a believer!!!! Got my SIBO diagnosed with a hydrogen breath test from my GI, but this MD doesn't' know how to treat SIBO unfortunately. I agree that blood levels should be checked, all the thyroid function levels tested, not just TSH, and get a breath test if you have concurrent gut issue/IBS, etc. Good luck!!!! I wish all of you health and wellness in 2014!!!! Let's beat this thing together!!!
Liza, I also have been diagnosed with fibromyagia, but most recently my IBS, that I've had for 20 some years, had gotten worse, so my GI ran a breath test and I have SIBO--small intestinal bacterial overgrowth. I took a course of antibiotics, and this really helped! However, I am learning how to heal my gut properly, as I cannot tolerate wheat, gluten, fructose, sugars, and have not been able to get back on probiotics, since I am also fructose intolerant. Please get tested for any gut conditions, as learning how to deal with my gut issues has really helped my fibromyalgia, and I think they are all related. My lastest blood work tested a little high for B6, and with SIBO, it causes malabsorption issues of nutrients, so this goes hand in hand with problems like this.
And all others on this forum. There was one post and I cannot remember by whom- where her husband had been diagnosed with a rare metabolic disorder that caused elevated B6. Can you advice on the name of the metabolic condition? I am afraid not even all endocrinologist would be able to pintpoint on the right diagnosis.!
After reviewed all the posts, there is one thing in common: GUT! Either an occult infection, chronic infection, food sensitivity/allergy that lead into some sort of SIBO or leaky gut/dysbiosis. This happened to me! I first got infected with some nasty travel bug in New Zealand 3/12 - I think Giardia but it was never isolated. 6 months later I finally was treated for Giardia but I think it continued to reoccur. My gut has been an issue on and off but better now than it was ever before. 2 weeks ago tested by B6 and B12 and both were high - 90 B6 where normal is 30, B12 was 1200, normal up to 900. Soo...somethings is either brewing these levels up (like a bug/infection in gu) or my body has stopped metabolizing them. So I will keep researching but in the meanwhile, for all those with fibromyalgia/chronic fatigue etc- gut is so important to heal first. Avoiding allergenic foods would be first and foremost: gluten, eggs, dairy, peanuts, soy and corn. To head gut this has worked for me: FiberSmart (fructo-oligosaccharides/slippery elm) 1 scoop in juice/water in the moring, 50billion units of probiotics daily to twice daily (fora while I wondered if the probiotics may elevate B6?)- Sacchraromyces bourardii once to three times daily, Boswellia three times per day (very anti-inflammatory to gut-) and L-Glutamine 500mg three times per day 1st week, then 1000mg three times per day for at least a month. This has worked for me. I can now eat some wheat again and coffee which I love. Good quality curcumin could be added to the above regimen as well. Cheers, and hope to find some answers soon on B6/B12 elevation!
Hi, not sure if the rare metabolic disorder you mentioned was myself (posted July 14th last year). Named HYPOPHOSPHSTASIA. RAISED B6 & low in the enzyme ALKALINE PHOSPHATASE ( NB phosphate itself may be normal or raised so note not phosphate but rather the enzyme phosphatASE.). It can affect many things & has been shown in mice (!!) to affect the gut flora. I have this condition & can echo dreadful gut problems over the years, muscle weakness etc. Anyway, the above two blood tests would help point to that condition if you have it. There is then a particular urine test that would confirm it. Let me know if you need info re that test. Best wishes.
Sorry, re last post, you may have guessed but I mis-typed name of rare condition! Should have read 'HYPOPHOSPHATASIA'. Do not confuse this with similar sounding, but totally different condition of hypophosphataemia by the way. Regards
Thanks for all the good suggestions about taking care of the gut!!! I'm a believer!!!! I wish you well, and I pray that you find no serious condition as a result of all of this, but hopefully a treatable one. Gut problems are so new to the Western Medicine world, so we are walking experiments for many treatments to come......
I stopped my B complex vitamin upon finding out about the elevated B6 levels, and little by little my hands seem to be responding. I still have many symptoms, but am chugging along like all the rest!
Freaks! All of you! :) j/k, I'd been having these neuropathy, not tingling, but electric current type feelings for about 2 weeks now, seemed to be out of nowhere, I had started gabapentin 2 weeks before that (never changed the dose, and can't find info saying it can cause this), they tested by B vit levels, thinking a LOW level could cause this, and they told me the results were all normal...I like to know the numbers so I logged on, the B6 is high, huh, ok, so I look that up.......and google says....."B6 toxicity" causes all this weirdness. I'm not taking B6, or any other B (well B9, but everything says that can't get high, could cause b12 level probs, but nothing about b6 or the b9 having any side effects whatsoever), I haven't taken even my multi vit in...months, and I looked up the food lists, I haven't eaten hardly any of the top, 15 or 20 foods that contain B6........ I've never had these electric current symptoms, it's so weird....and distressing..... (i've had weird neuro things, but not this one, and not one that had a corresponding lab abnormality.....)
I've done some journal searching, and I can't find anything. if my dr's give me one more "lets wait and see" I may just scream.......or throw that box of itchy scratchy hospital kleenex at them.....
How are you doing? I just discovered that, I am low in vit D(14) and very high on Vit B6(104) . Were you able to find the root cause? I am not taking any supplements just wondering where this B6 is coming from? Any help is much appreciated.
Hi, having similar symptoms for years, diagnosed w fibromyalgia and have had horrible gi symptoms for years too. My level was 219, 146 max. I,m on the scdiet, so eat lots of meat. My multi contains abt. 2.8 mg. What i found out is that wit a zinc deficiency, the conversion of b6 info the usable form p5p can be hindered. Zinc is also needed to make gastric acid, tot digest our food. So low zinc will lead to gi trouble fast and enables sibo. Also, b6 goes hand in hand with magnesium. I,m also looking into the MTHFR gene mutation, which involves folate and b6. See article b6 is the queen B on MTHFRalliance.com
I am not a regular on this forum either but do so agree with you. All the symptoms mentioned are due to gut dysbiosis. IBS, hypothyroid, skin conditions, malabsorption, diarrhea, constipation, tingling, numbness, etc are all symptoms of celiac, which in turn is a gut condition. 70% of your immune system is in your gut, so start here for autoimmune conditions eg. diabetes, rheumatoid arthritis, allergies, etc.
Check for the following 2 signs:
1. Braly's Sign - short little finger (top of little finger falls below distal joint of ring finger). Indicates gluten and lactose intolerance and perhaps Celiac Disease.
2. Morton's Toe - 2nd toe longer than the big toe. Indicates the liver has an inability to convert B6 to P5P. That means you need to supplement with P5P. B6 can also build up in your body, as it is not getting converted to a usable form. Many people with this problem can't recall dreams. Other symptoms are depression, skin eruptions, tingling, short term memory loss, irritability and PMS.
My son has both a short little finger and longer second toe. He also had low thyroid, and impaired function of kidney and liver. He is making good progress on the GAPS Protocol and expects to follow it for another year. I would recommend this gut healing protocol to everyone.
Hope this helps.
I don't know if you will get this as your post is older. I too have extremely elevated B6, do not take vitamins or any supplements that have B6, avoid all foods that have it and it still is going up. My neurologist has sent me to two dietitians who agree it is not coming from my diet but he insists it has to be. It is clear from all the posts here that he is not unusual. Did you ever find anything that helped it come down?
I am new to this site and feeling like I have friends that understand. I have had that spot of skin burning on and off for years. Some years more often than others. (Haven't had it since I can remember now...) I have also had just about every other symptom listed so far, at some time or another (this is as far as I've read yet). The beginning of my hunt for an answer started last Oct when I was suddenly so fatigued I went home and slept for 24 hours. I assumed I had a virus. After a couple weeks I saw my primary and fortunately she ran a stool which found dientamoeba fragilis. A rare 3rd world parasite. My GI and Infectious Dr.s said "Hmm, have you been out of the country? I've seen this once before about 20 years ago..." (I did not travel.) SO for a couple months all my NEW symptoms of muscle twitching, skin crawling on my face & in my nose, electric jolt feelings, extreme fatigue, sensitivity to sun, feeling of adrenal rush in my chest and neck, rash on my belly & insomnia...were attributed to either the bug or the antibiotic I had to take. Fortunately my neuro tested B6 which is elevated to only 33.1 and found my ds-DNA positive. So, I see a rheumatologist next week and hope for an answer (sounds like Lupus is a possibility). This site has been a real lift even though no one else so far has mentioned autoimmune disorder. I will be back for any and all info people post!
Thank you all!!!
My vitamin B6 level is 250. I am taking no supplements that contain B vitamins. However I DO have hashimotos hypothyroidism. I also have a gene mutation (MTHFR) which affects the methylation of B6 B12 and folate in my system. I have been suffering with neuropathy in my feet, tired and tight leg muscles. There are days I can barely walk. I also need to use a cane for out-of-house mobility. Whereas once I went to the gym and participated in Zumba and pilates, I can no longer do anything. Even walking is exhausting. I believe there is a correlation between the hashimotos, MTHFR gene mutation and the problems outlined above. Anyone else with this mutation? Hashis?
This website may be helpful re neuropathy and other problems associated with MTHFR gene mutation.
Neuropsychiatric & Neurological Conditions: MTHFR mutations have been linked to neuropsychiatric conditions due to the indirect effects of MTHFR activity on the production of serotonin, dopamine and norepinephrine, as well as the potentially toxic effect of hyperhomocysteinemia. Schizophrenia-like syndromes, bipolar disorder, Parkinson’s disease, Alzheimer’s disease and vascular dementia have all been associated with one or more mutations of the MTHFR gene (Lewis, X. Molecular Psychiatry. 2006;11, 352–360).
Insomnia, irritability, forgetfulness, endogenous depression, organic psychosis, peripheral neuropathy, myelopathy and restless leg syndrome are all also mentioned in the literature as potentially being influenced by this enzyme deficiency. The MTHFR C677T homozygous genotype has also been associated with an increased risk for migraine with aura in most ethnic groups except for Caucasian populations (Schurks M., et al. Headache. 2010; 50(4):588-99).
In a recent metanalysis, there was a relationship between the C677T mutation and increased susceptibility for depression (Lewis, X. Molecular Psychiatry. 2006;11, 352–360).Neuropsychiatric & Neurological Conditions: MTHFR mutations have been linked to neuropsychiatric conditions due to the indirect effects of MTHFR activity on the production of serotonin, dopamine and norepinephrine, as well as the potentially toxic effect of hyperhomocysteinemia. Schizophrenia-like syndromes, bipolar disorder, Parkinson’s disease, Alzheimer’s disease and vascular dementia have all been associated with one or more mutations of the MTHFR gene (Lewis, X. Molecular Psychiatry. 2006;11, 352–360).
Insomnia, irritability, forgetfulness, endogenous depression, organic psychosis, peripheral neuropathy, myelopathy and restless leg syndrome are all also mentioned in the literature as potentially being influenced by this enzyme deficiency. The MTHFR C677T homozygous genotype has also been associated with an increased risk for migraine with aura in most ethnic groups except for Caucasian populations (Schurks M., et al. Headache. 2010; 50(4):588-99).
In a recent metanalysis, there was a relationship between the C677T mutation and increased susceptibility for depression (Lewis, X. Molecular Psychiatry. 2006;11, 352–360).
My husband has been dizzy/imbalanced for weeks. He has high B6 levels, never takes supplements but does eat 1 or 2 meals of cereal each day. I'm sure those are fortifies with B6. We also eat chicken, spinach, cantaloupe (lots of bread and veggies too) so he is getting it from diet, but it's hard to believe this diet would cause too much. His primary care doctor referred him to an ENT specialist because inside the ears show pressure/inflammation and the week of steroids didn't fix it. He does not have pain or numbness in extremities. He does have some insomnia, trouble focusing, and very "tipsy" feeling. He sees the ENT tomorrow. I wonder if they will refer him to a neurologist or endocrinologist?
Maggie, I am desperate to find out why my B6 levels are high. I don't take B vitamins, no multi, it has been high for YEARS. I have terrible RLS, I have peripheral neuropathy, I have horrible insomnia. It's awful. My thyroid and adrenals are shot. Can you tell me what your husband was diagnosed with?
I came across this forum by looking up pyrroles disease (aka pyroluria), b6 and zinc deficiencies. I don't know if any of you have heard of pyrroles disease, it seems as though it has only recently been brought attention.
"Pyroluria (Pyrrole disorder) is characterized by an elevated urine kryptopyrrole, which results in a dramatic deficiency of zinc and Vitamin B6. It is a blood disorder, which is genetically transmitted. Because of an abnormality in the synthesis of hemoglobin, a chemical imbalance occurs in the blood. Diagnosis can be made by urine laboratory testing. Treatment consists of Vitamin B6 and zinc."
Testing for pyroluria requires a non-standard urine test that only few labs can do at the moment, however, it seems as though some of you have unusual b6 and zinc levels. Pyroluria has also been associated with MTHFR gene.
I stumbled upon this thread and am happy to find anyone who can sympathize with me and possibly help me.I have spent the last several years seeing numerous doctor's who haven't been able to figure out what's going on.My newest labs show very high b6.They thought it was a lab error but after 3 tests it isn't. I take no vitamins or prescriptions,not even Tylenol.I have low D,MTHFR double mutation,gluten and soy intolerance.I'm in constant pain.I used to workout daily and now can't even go up the stairs without joing pain.If I do try to work out I get severe muscle spasms afterwards for days.I can't even play with my kids.I have drained my savings account and spent thousands of dollars on doctors and tests.I just can't do it anymore.Any suggestions would be greatly appreciated.
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