B6 Toxicity

[chimey]

This is more of a comment than a question, but I would welcome info from anyone who has any experience with this situation. I took a prescription called Folcaps (which had 25 mgs of pyridoxine in it) for a year. In February of 06 I began experiencing symptoms which have now been diagnosed as Pyridoxine (b6) Toxicity Induced Neuropathy. I did not get this diagnosis until August 15, after four MRIs, several specialists and balance testing. My b6 blood level was 81 - the maximum safe level in this test was 32. When reading about b6 toxicity one reads about tingling hands and feet and being "wobbly on your feet" and things of that nature. It can be much more than that. Be careful with Vitamin b6. It's not known if the neurological damage is reversible. Some studies show it is, some show it is not. The damage I have suffered extends to my thyroid, my blood pressure has been lowered (to an unsafe level - it was healthy before), my balance has been damaged - I don't know where my right foot is in space, I've had insomnia, my symptoms are too lengthy to list here. The fatigue that I have been experiencing for the past several months has started to lift now that I've stopped taking the medication, but it is still profound...another hallmark symptom of b6 poisoning. This is a serious toxic situation and one that is not understood by the medical community. I am waiting to find out how much of my life I will get back. I am rebuilding my stamina & neuropathways with an optimistic outlook. And getting the word out. MD's don't know about vitamins. Work with nutritionists. Don't go it solo

[NURSELPN]

http://drirene.healthandage.com/qa3/qa280132.htm

[ninamagic]

Wow, I had what I think was B6 toxicity about 6 years ago. I was taking a B-50 supplement for a year - that's 50mg of B6. The neurologist had no clue what was going on. Finally I guessed B6, he said maybe, I stopped it completely (that was a rough road), and major changes started to happen in 8 days. It took about 3 years, I'd say, to get to the point where I didn't notice any remaining effect. But I'm still very sensitive to it. I can't yet take a whole Centrum each day (that's all of 2mg) without feeling a little wierd on my fingertips and toes after a week or two.

Anyway, it's a long story. Let me know if you want to know more. Personally, at the time, I would have loved to hear someone else say they'd been through it, and I wasn't nuts. The neuro never really was any help, so the fact that you have one who tested for it is a big plus!

[hopefulatlast]

I am so thankful I found this website, and for the individuals who told their stories to get the word out....it has saved my life!  In 1999, I went to a Neurologist with several severe neurological complaints.  I thought I was possibly dealing with MS.  MS was ruled out after testing, but I was not diagnosed at that time, and the Neurologist thought my problems were in my head, and that I needed to see a counselor! :(  Finally in 2007, I got the courage up again to go to another Neuologist for help, because my symptoms had worsened, and I was having difficulty walking (long term, extreme B6 toxicity side effect).  I decided that this time round with the new Neurologist I was going to be very proactive and obtain all my test results and "analyze" them with the help of info off the internet.  To make the long story short, my B6 level was at 73 (normal is 23 for women).  I then found this website and others to confirm to me that it was "B6 Toxicity Induced Neuropathy".  I explained my findings to my Neurologist, and she still wanted me to go through all of the MS testing because of the evident neurological damage (my reflexes were fried).  Yes, MS was ruled out, and the Neurologist did her studying on B6 toxicity, and I was FInally diagnosed properly.  The Neurologist also told me that she also had another case that had just come to her with high levels of B6, and she was wondering what was going on with this!?!  (A Note to Neurologists:  This is a serious problem....don't write B6 off as a water soluable vitamin....it's toxic, and your patients need help!)  I have been detoxing for 8 weeks now....and it has been a nightmare.  Detox symptoms include (on top of toxicity symptoms!): SEVERE FATIGUE, nerve pain, difficulty walking, intenstinal pain, blurred vision, depression, SEVERE NAUSEOUSNESS, headaches, muscle weakness, dizziness, vertigo, hopelessness, etc. etc. etc.  I am using a special diet from a book called "Patient Heal Thyself", which includes a lot of fresh, organic, whole foods. And I have a lot of support from friends and family to walk me through this trying experience.  I have lost 10 precious years of vibrant living due to B6 toxicity, but I am hopeful that I'm ready to finally close this chapter, and begin a brand new book in life.  Detoxing can take up to 6 months, and 3 years for the nerves to heal.  This truly is a serious condition, and I have had too many symptoms to list here from the toxicity.  It's a SILENT CRIPPLER, and the funny thing about B6 toxicity is that it is addictive because B6 makes you "feel good" at first, and then when you don't have it, you feel worse, so you "think" it's a good thing and that you "Need" it.  Quite a puzzling phenomenon!

[boots625]

I suspect that I have B6 toxicity.  I now have nerve damage in my colon which makes it not function very well.  I read that it attacks old injury sites and those are the spots that are affected (toes on one foot; bladder; L1 spine).  I was on UASA vitamins since July.  I tried getting of of them a few times and my gut shut down each time so I would return to them.  About eight days ago I stopped again and my colon is trying to quit.  Five days after I stopped them, I took a 1/4 daily dose to try to get my colon to work again.  Within an hour I had a hot foot with numb toes.  I had a burning pain in my calf all night and felt terrible the next day.  I have found that I am not so much off balance since I stopped them and am not as weak.
Can you give me an idea as to what you eat and how to detoxify myself.
boots625

[boots625]

Could you correspond with me on this recovery period?

[frootbar]

hi there,
i'm a C.N. (however, a shadow on the internet so you don't really know, but i am),
and have worked with supplements for about 30 years.
i have taken them for over 35 years now.
i will tell you, b-6 toxicity exists.  i am a supporter of taking supplements, but agree,
this one is a cautious one.
i have the problem myself!  i have numb toes, mild nerve damage upon EMG findings.
they thought i had maybe ms/als/ something.  i have no firm dx of this but, with testing
taking b-6 and not taking it, taking it makes the numbness worse.
studies show most can take up to 500mgs. a day and should be ok, but i'm not so sure
about that.
there are also studies showing that over 150mgs. and in a few cases less than 100mgs.
a day could cause neuropathy.
one neuro i saw thought i was in the safe zone, but i'm not so sure.
the suspected reason for the toxicity, is that your liver is overwhelmed and cannot
add a *phosphate* molecule to the pyridoxine, thereby producing the active pyridoxine
5 phosphate.  instead, you have pure pyridoxine floating around and it's toxic.
i would love to know the b-6 toxicity websites to check them out.
thanks, hope i was helpful a bit.
fb

[boots625]

I find this very interesting.  I was taking Norvasc which I think compounded or created the problem.  Do you think that natural B6 would react different than man made B6?  I started feeling bad last May. I have been off of everthing (Norvasc include) for three weeks.  I feel that I am very slowly getting better but it is a rough trip, very up and down.  I am very weak and unable to do hardly anything.  I would have never beleived that I could go this low.  My doctor thinks I am depressed.  He doesn't know the difference between weak and fatigue.

[frootbar]

i gotta run for today, but, i wanted to answer.
i kind of don't think it matters, although b-6 from food likely
is fine of course.
b-6 is involved in neurotransmitters, substances such as gaba,
so, this could jive with your feeling down and tired and so forth.
i think that any supplement no matter how it's touted, of b-6,
if it's your cause then it will bother you yes.
hope i helped?
fb C.N.

[karbry1]

In May of 2007 I was taking a sublingual B-Complex (B12 and B6) when I experienced vertigo.  I went to a neurologist who said by B12 levels were 200 and a little low so he gave me a perscription for Cerefolin, a mega vitamin usually given to Parkinson's patients.  Within a month I had lost my balance, my reflexes had slowed down.  I was suspected for MS.  My symptoms worsened, and I was at a point in November that I was going to need a walker.  My toes on my left foot became paralyzed, and I needed a bar to balance myself in shower.  I'm only 40 years old.  My neuro decided to send me to a ALS specialist in Philadelphia.  They ruled out ALS, however my symptoms persisted.  Meanwhile I ran out of my perscription, and just didn't have time to get them refilled.  We'll as each day went by I felt just a little bit better.  So I decided to stop the pill without my neurologists permission.  Within 1 month I was a slow jog up and down my driveway. I actually cried and was so thankful for being able to do that.  I am now 2 months off the medication and can run up stairs again.  I am scheduled to go to a hematologist on Friday to figure what exactly my levels are.  B-6 can cripple and kill.  I wrote the FDA a letter to tell them of the effects I had from Cerefolin.  My main concern is that this drug is given to patients that already have a physical impairment and could worsen their condition.  Thank God I'm not alone with this.

[boots625]

Did you loose your appetite during this ordeal?

[frootbar]

don't forget, that prescription versions of some vitamin formulas that exist, may be
potent, and often are mixed with fillers that are for lack of a better description, nasty.
however, yes, if the amount of b-6 was high enough, it could theoretically be the cause.
it is a dilemma, because b-6 can alleviate alot of things related to cardiovascular issues,
and is involved in seratonin and so forth, even immunity.  so to not be able to take it
is, well maybe not the worst thing but i'd rather see people able to tolerate some.
it is great you are better.  i am not with my b-6 issue, but it's slowly working i think.
and being in this field i never had much concern, yet, here i am with you on this.
froot.

[karbry1]

I've had a sinus bradycardia condition since I was a little girl....I've also experienced tachycardia episodes.  This was confirmed at a cardiac unit at a hospital where I tested postive on a tilt test.  My heart stopped for 4-5 seconds then restarted.  I went to see a hematologist last Friday, as I've already had 6 MRIs and Cat Scans, and am frustrated with my neuro.  The hematologist is testing me for Porphyria, which I've never heard of, but it has something to do with the blood not producing a needed enzyme...which can lead to the b6/b12 issues, heart issues and the neuropathy that I experienced.  Have you ever heard of Porphyria?

[frootbar]

oh yes, i've heard of it.  i can't from memory recall all that is involved, but i do follow
you on the b vitamin issues.
i do not believe it is very common.  i would have to check into my huge piles of books
on these subjects (they are all over my place!), and re-introduce myself to this problem.
if you get a positive i suppose it would maybe answer some questions for you finally.
i don't know why, but neuro's seem to be alarmingly very frustrating.
let me know if i can help at all.
fb

[Competitor]

I had experienced B6 Toxicity !  It was so unexplained for the longest time, when I would have numbness or tingling of my fingers/hands and feet.  I would be at the supermarket, at the gym working, training, w/ friends, anywhere... and my hands started tingling and going numb.  

My boyfriend said What have you been doing differently that you never did before?  Something has now caused this.  So I back tracked, and the only thing new was overdosing on vitamins.  Bought a ton of Vit A, Vit B's (all of them), Vit C, Vit D, Mg, MSM, Gluc Chondroitin, everything.  Found out that my diet was sufficient, and I was getting well over the RDA values for all Vitamins and Minerals.

Stopped taking the vitamins.  They are unnecessary, since I get enough from my diet alone. (go to Fitday.com, enter your diet, click on "reports", and it tells you the RDA values/Vitamins and Minerals you are taking in).   Since then, the numbness and tingling has stopped.  Thank god !

[Eric346]

I too had a bout with B-6 overdose when ingesting 200-300 mg/day for a mild case of carpal tunnel. My symptoms were not as serious as others mentioned here since I was on them for less than 2 weeks, but it was scary and did mess with my thyroid, heart, intestines, and I had vertigo in addition to numbess, pain and tingling.  I think I was toxic this quickly due to some kidney impairment.  Anyways, I am very glad to hear other sufferers are recovering.  I myself feel somewhat better a month later, and recommend acupunture for nerve compression, not this vitamin.  Moreover, I don't know if the vitamin prod. company does an accurate measuring job since their vitamins supposedly are 90% wheat gluten with the remainder pyridoxine.  The worse symptoms are better, however my dreams are still rather vivid and unforgettable.  Does that also subside?   Eric Nissani

[Eric346]

Just some additional remarks after rereading these blogs.  I think staying off caffeine and sodas helps detox, as well as avoiding spinach, salmon, eggs, carrots, peas and potatoes (high in B-6) helps. Also, eating frequent small meals helps intestines normalize from B-6.  Sleep with your head elevated to minimize blood pressure or heart problems, and try to do a lot of walking, meditation, stress reduction, and non-vigorous exercise as well as rest.  Some have claimed wearing loose shoes is good for nerve damage in the feet.  Test for thyroid problems, and be careful about ingesting any other drugs or vitamins.  I took aspirin for a few weeks after I had some bad heart palpitations (slept with my head too low after drinking black tea) however I think in the long run nerves heal best drug-free and so I have eased off the aspirin.  Eric

[Savmay]

Wow, it is helpful to read your experiences. I have suffered vitamin B-6 toxicity twice in two years. The first time I was on a high dose sublingual vitamin for PMS symptoms. I started having tingling, numbness, burning pain and doctors thought all the usual pathology like MS. I had MRI, blood testing, ect... and the only thing off was B-6 levels were 136! I went off the vitamins and then found I was pregnant. It took about six months for me to become "normal".

then, during my postpartum, I started taking a low dose prenatal vitamin b/c I was feeling that nursing was draining me. With a couple of months, all the toxicty symptoms came back but worse this time. Probably b/c my nerves were still healing from the first time. I had no idea that such low levels of B6 would cause problems. And it effected my baby. He had terrible sleep issues, probably insomnia due to too much B6 in my milk. this time my blood levels were 125.

I went off all vitamins three months ago. But, i am still having so much pain and sometimes weakness. It is difficult to sleep and lugging around my 23 pound one year old can be challenging. I worry that there is something else wrong but it sounds like the healing process can be painful and take longer than I thought. I miss exercise so much! I went to a pilates class yesterday and last night, the aching pain in my nerves was almost unbearable.

I am learning about patience!
Any ideas how long this healing can take?

[zapper11]

My boyfriend got B6 toxicity from just taking a B-Complex vitamin daily. The neurologist said his level was 8 times higher than normal.
Now the tests say that the B6 is out of his system, but he still has neuropathy symptoms. He feels painful "electric shocks" mostly in his feet, toes and hands, but sometimes chest and abs too. It's really depressing because he's always been fit, healthy and athletic. It's been around 2 or 3 months since the B6 has been out of him, but he's not noticeably healing yet. The EMG test said he had mild nerve damage. Can anyone tell me if they had similar shock-like zaps, stabbing pain or burning feet from this and got better over time. All we have is hope that his nerves will heal and I'm hoping to hear your experience of how long it takes or if you still haven't been cured yet. Thanks

[principal]

I was diagnosed with b6 induced neuropathy in July of 07 from Centrum Vitamins. I had experienced numbness in my toes for at least 3 years. The numbness and tingling got progressively worse. No physicians in my area could tell me the problem even a neurologist. Finally I told my primary physician of the electric shock-like vibrations going up into my chest and face. He contacted a neurologist at Johs Hopkins who called me at home and asked me to see him the next day. I was tested with the nerve conduction tests and gave 9 samples of blood. Two weeks later, he called me and told me my b6 level was 66 and it had more than likely produced th neuropathy. It was a long, very difficult 4 or 5 ordeal mainly because so many no absolutely nothing about this terrible condition - and I am talking about the medical field! My shocks are not what they used to be now. I can now sleep without sleep aids, but my mobility is still limited due to the incomplete recovery of my nerves in mainly my left leg. I am a Christian and find my solace in prayer and reading Scripture. I know I am in good hands, but I did go through anxiety and depression. My wife was a huge help. Others just don't understand. I am 63 so the healing will be longer than you will experience. But you, like me, will heal. The nerves will recover. From what I have read, and I read everything I can about this problem, only those who have take massive doses of the pyrodoxine do not recover. All the rats recover. Sorry for the poor humor. I would be glad to talk with you about this. Just let me hear from you. God bless.

[hopefulatlast]

I have been detoxing from severe B6 poisoning for over 10 months, and it is a living nightmare.....My neurologist told me that it will take up to 3 years for the nerves to heal.....and then I'll know if I have permanent damage.....I've been severely poisoned for over 10 years, as my first neurologist missed it totally 10 years ago.....so I'm crippled, and bed-ridden, and now my heart feels like it is ready to give out.....lots of palpitations, starts and stops, shooting pains, etc.....My advice....take it one day at a time, stay focused on God, eat only organic foods, rest, rest, rest, rest, rest, and tell the nay-sayers to nay-say no more!.......Good luck!

[kathryn80]

Wow, this is eye opening.  I thought B was water soluble... i.e. pee it out if you have too much.  I will pay more attention now.

[lsstressedout]

I have been drinking an OTC "energy drink" with 8333% of B6 in it ( and hight percentages of other vitamins) daily for appx 3 years now.  I know I am addicted because I crave it at 10 am every day.  Am I to understand that this is going to do these horrible things to me?  My body is not washing out this vitamin as it does with the vitamin C and niacin?
lsstressedout

[Savmay]

I had all those electric shock feelings as I was healing and it got much worse rather than better for a few months after quitting the vitamins. And the stabbing, burning pain. Now, it has been almost seven months and the pain is almost gone. I am not myself again yet as I too used to be physically fit and now have lost a lot of muscle strength. I still have twitchy muscles too. But, I know I am healing and your boyfriend will too. For me, I realized I have B12 and Vitamin D deficiency so needed to take those vitamins and avoid B6. I live in the NW with no sunlight and have been breastfeeding a baby so all my nutrients went to him.
I have heard it takes about three years for full recovery. The thing I don't really understand is why this happens. The first time it happened to me (two years ago) I was taking a fairly high dose of B complex. The second time (seven months ago) I was only taking a prenatal vitamin and having a packet of E-C every day.
For some reason, there are some people who just can't tolerate B6 and it becomes like a poison in the system. I have heard that we might not produce the enzyme needed to process it.

[karbry1]

okay...it's been a year since my symptoms have developed and about 6 months since I stopped using the Cerefolin - mega vitamin my neurologist gave to me for low b/12.....which also contained mega doses of b/6....I have atrophy in my feel...have difficulty walking, lost arms/legs strength.  I found a new neurologist that I am going to ...I am going to ask to be tested by something called Charcot Marie Tooth...I have some symptoms of this disease as well as my daughters.  There are a list of medications that you shouldn't take...b/6 is one of them (mega doses).  I suggest that you guys take a look at the symptoms for this disease and see if this why your reaction to b/6 was toxic.  It's a disease that not a lot of doctors know about...in the state of Pennsylvania there are only 8 doctors I've found listed that actually have experience with this specific disease.  The most common symptoms are hammertoes and high arches...but there are so many more.  It is important to know if you have it as there are many medications that are toxic to CMT patients..including penicillian.

[Zeumi]

Excessive vitamin B6 (pyridoxine) intake (that is over 100mg/day) causes sensory and peripheral neuropathy. Some symptoms are: unsteady gait, paresthesia (tingling/pricking) and impaired tendon reflexes, and also cause degeneration of the dorsal root ganglia in the spinal cord, loss of myelination, degeneration of the sensory fibers in peripheral nerves.
Tolerable upper limit for adults is 100mg.
1998 RDA ranges for Vitamin B6: 1.1 mg to 2.0 mg day (based on age sex and pregnant and lactating.)
B6 is found in plant foods, animal foods (meat) and whole grains.
B6 is lost when foods are highly processed.

Plasma PLP concentrations are thought to be the best indicator of vitamin B6 tissue stores. 24 hour urinary test over 1-3 week period is recommended to more accurately assess vitamin B6 status.

Eating a balance whole diet is best; if you take multiple supplements - make sure you are not exceeding the RDA and if you are taking medications - check with your pharmacist and MD about Drug Nutrient Interactions. Some meds may interfere with those supplements or vice versa.

Hope this helps! Stay Healthy

(Referenced from S.Gropper: Advanced Nutrition and Human Metabolism, 4th ed, 2005)

[RRoyster]

I recently took about 200mg/day B6 in addition to a B-Complex at about 30mg/day.  I took this to help with menstral issues.  I have taken a B-Complex for a long time, with no issues, but not this high of dose.  Within 10 days of adding the extra 200mg/day, I had some mild dizziness and maybe a little tingling.  I stopped taking it right away but in the days following, I mostly noticed problems with my vission - well dizziness but feeling like it was harder to focus.  About the same time I had gotten a new high quality food based multi supplement from my acupuncturist, and after a week or so after my B6 symptoms subsided (although not totally gone) I started the new food based supplement which included 100mg/day of B6.  Within a few days, similar symptoms were back - not as intense and mostly related to dizziness, blurry vision.  So I stopped the multi and I also stopped a green drink which I had been consuming for a long time b/c it has a food form of B6 (it's kind of like a multi too).  So then again after a week or two with nothing and things improved, I just went back to my green drink.  After a few days, I seems to be worsening again.  I can't understand how maybe 10 days of this non-food based 200mg B6 has made it so that now I can't tolerate food source supplements, especially the green drink which I've used for years and is basically just food.  I'm hoping someone can tell me if my symptoms sound like B6 toxicity - they're hard to explain - I don't have the pain some of you mention - but it seems that I have a harder time seeing and focusing - and sometimes that's mixed with mild dizziness and slight loss of balance.  Also, does anyone know if I'm now not going to be able to tolerate food based B6 just b/c of this one short incident.  Should I wait a certain amount of time b/4 I take anything, and then I'll be able to tolerate it.  Or will this always be an issue for me?  I need other things in the green drink and multi - again they are food based, but it sure seems like when I take them I get a little worse again.  I'm having a really hard time knowing what to do and how can I ever explain this to a doctor - its hard to describe my symptoms. I appreciate any help anyone can give me!!!  Thanks!!!

[zapper11]

i'm feeling encouraged by many of the comments. one thing i'm interested in knowing from those who have healed within three years, does the pain gradually go away or somewhat instantly go away? does year one feel more painful than year two?
zapper 11

[GoldenPig]

I'm breastfeeding now. and just recently I found I'm toxic with B6. I taking B6(50mg) for several month, everything was fine, baby and myself. and just around two month ago, I took a Calcium & Magnesuim pill with B6, then problem happened, I feel pain, numbness from my fingers and toes. Then I stoped it. However, my baby has problem, first she show up skin problem, the temper, the red eye, sweating, coughing, weight lossing, night cry ... I talked with baby's pediatrician about that, he had no clue. just gave us infantol for that. first few days, baby was ok, problems almost dispeared,however, then I found she start overexited after the dose. (Infantol also has B6 in it) Then, I decided stop it. She looks ok. However, just few days ago, I suffer the B6 toxicity again from the food, this time a little bit serious. She also respond serious, she had so overexitation for 2 days, insomina again, weight loss 1.5 lbs in 2 days. Now myself, feel ok. However, I do really worry about her.

Would mind share your experience with me about your baby's treatment? Please give me some suggestion from your experience. I will be really appreciat for your help.
and also thanks god, i have chance to get so useful information, thanks veryone here for sharing your experience.

[GoldenPig]

I'm breastfeeding now. and just recently I found I'm toxic with B6. I taking B6(50mg) for several month, everything was fine, baby and myself. and just around two month ago, I took a Calcium & Magnesuim pill with B6, then problem happened, I feel pain, numbness from my fingers and toes. Then I stoped it. However, my baby has problem, first she show up skin problem, the temper, the red eye, sweating, coughing, weight lossing, night cry ... I talked with baby's pediatrician about that, he had no clue. just gave us infantol for that. first few days, baby was ok, problems almost dispeared,however, then I found she start overexited after the dose. (Infantol also has B6 in it) Then, I decided stop it. She looks ok. However, just few days ago, I suffer the B6 toxicity again from the food, this time a little bit serious. She also respond serious, she had so overexitation for 2 days, insomina again, weight loss 1.5 lbs in 2 days. Now myself, feel ok. However, I do really worry about her.

Would mind share your experience with me about your baby's treatment? Please give me some suggestion from your experience. I will be really appreciat for your help.
and also thanks god, i have chance to get so useful information, thanks veryone here for sharing your experience.

[Contessa765]

I am new to this post but have found it so helpful. I have what I believe to be B6 toxicity: it has been a long 4 year story - a lot of ups and downs while taking 25-50mg / day...mainly severe fatigue, pins and needles, etc. I have seen so many doctors... I stopped taking my multiviatmin about 6 weeks ago and my experience has pretty much mirrored those above. "Total nightmare" sums it up best. I'll save you the medical side of the story since its pretty much useless....

I would welcome any feedback on this concept of getting worse initially. Could anyone tell me how long the detox process intensified before they felt a sense of improvement? Do symptoms change as you go through it? (Initially I was more fatigued, now the heavy neuro symptoms seem to be evolving, difficulty walking, nerves feel raw, muscle weekness and hands etc....) Has anyone else experienced severe "crashes" of profound weakness? At times I seem to experience these rapid, extreme declines, I wind up feeling inexplicably horrible, barely able to move or even speak. I notice that I become extremely thirsty and drinking a lot of water seems to help. It could be associated with increased activity or eating, but I really try to keep the B6 in my diet to a minimum. Last question -any practical advice on how to deal with B6 foods, aside from small meals and avoiding the high B6 foods. Right now I can't seem to tolerate them at all (except in small quantities with some wine at dinner as the alcohol seems to block B6 absorption) - is it best to really try hard to avoid them for a while or to try to tolerate small quantities? Thank you for any feedback...wish you all peace and comfort.

[Contessa765]

Can anyone recommend a physician in the New York / Long Island area who is knowledgeable about B6 toxicity?

[Contessa765]

Just a quick follow up since my last post....seems I have turned the corner and feel a definite sense of improvement. Have experimented and done a ton of research, and thought I'd share what helped most:

No supplements of any kind, lots of water, no formal excersise, just gentle stretching and getting back slowly to normal activity, 1-2 glasses of wine with dinner (reduces B6 levels... in moderation...never on an empty somach), eating very small & frequent meals, eating foods containing natural estrogens. B6 absorbtion seems to be reduced in the presence of estrogen foods. (While avoiding estrogen inhibiting foods) Apples help a lot, along with a few spoonfuls of olive oil each day.  Lists of other estrogen foods can easily be found online. I now believe many of the toxicity symptoms are not directly caused by the b6, but by the severe depression in estrogen levels and resulting hormone imbalance. (At least in women) I think getting estrogen levels back up helps tremendously with energy. Also - absolutely NO aspartame, phenylalanine, nutrasweet (all the same & in many diet/ sugar free foods). I stumbled upon "aspertame toxicity" in my research. It is not only horrible for healty people but seriously contraindicated for anyone with any type of existing nerve damage or anyone who is predisposed to it (such as diabetics). I had been using Trident gum - did not realize it is loaded with aspertame. My nerve symptoms improved dramatically almost immediately upon removing the aspertame from my diet. Read labels & learn the different names it is listed under - it can even be found in some non diet foods such as lemonade and jams. If you need to avoid sugar for any reason - check into stevia - natural and safe for diabetics. Hope this helps....

[Savmay]

Also want to add that you still need B12 and even more so when healing nerves. The b12 rebuilds myelin. This was my mistake after B6 toxicity: I cut out all vitamins. AFter a few months, my symptoms were worse and my blood work showed my B12 had gone down significantly. Also, even though the standards in the US are low for B12 (300 is considered normal) you really need to have higher levels (around 1000) to be healthy neurologically, especially when healing. Taking high doses of methlycobalimin sublingual has changed my life!
You can NOT get toxicity to B12.

[Meganamy]

I've been struggling with this pain for a year and a half now and have seen 15 Drs, including neurologists, who have no clue what I have. I'm pretty sure it's B6 toxicity. Anytime I eat any foods with B1, B3 or B6 in them, I'm in extreme pain for the next 6 or so hours. My hands and feet are always tingly, but by far and away is the extreme breast pain. It feels like someone's driving nails into my breasts with a hammer. Compression, a very very tight sports bra over my regular bra, is the only thing that lessens the pain. I haven't been able to find an explanation for this anywhere, but I think one of the posts here explains that wherever the most nerve damage occurred seems to be where the pain is greatest. I started taking B6 before I got pregnant and I think it reached toxic levels during pregnancy. Now, I'm only eating apples, celery, lettuce, sugar and a few other foods that don't contain vitamin B in them because I'm trying to lessen my pain and get the vitamin B out of my system.

[Savmay]

That compression, known as the "MS hug", is the compression of the nerves in the chest. It does NOT mean you have MS but does go a long with nerve damage. Often people with B12 deficiency get that feeling. I feel concerned about your current diet in terms of being well nourished. I have never heard of someone having toxicity symptoms just from foods...
Of course, listen to your body and if something makes you sick, avoid it. But you do need to get enough nutrition and if you are healing from nerve damage, you really need B12 as it restores the mylien on the nerves. Visit this forum for more info: http://forums.wrongdiagnosis.com/showthread.php?p=128623#post128623

Get well!

[Meganamy]

Hi Savmay,

Thanks for your quick reply. I, too, am concerned about my current diet because there's not much that I can eat that doesn't cause extreme pain. Based on your Oct 29 post above, I did buy some B12 and have taken a small amount of that and will continue to do so.

Thanks!

Megan

[Savmay]

Megan,

Do you live in an area that has access to Naturopathic Doctors? They are Doctors who are trained in alternative therapies and also nutrition. YOu might find good support right now from someone who can guide you in this process. I want to make sure you are taking sublingual Methylcobalimin? Other forms of B12 are not as easily absorbed and can cause problems. A "small" amount may not be enough if some of your symtoms are due to B12 deficiency. I would recommend getting a full panel of bloodwork and checking all your vitamin and mineral levels so you will know what is truly going on. With such a limited diet, you could be making your symtoms worse through vitamin deficiencies. I was.

Sav

[Meganamy]

Savmay,
  
  Thanks for letting me know about the kind of B12. I actually set that one back down at the store because I figured just taking a B12 pill would be easier than sublingual. Ooops.

  I happened to talk to a friend on Thursday who had seen a naturopathic Dr who helped her with a problem that she had. Thanks for the suggestion! I got the Dr's name and will definitely book and appointment.

Megan

[Savmay]

Megan,

Great! NDs are so skilled with these kinds of problems and it can be hard to figure it all out alone. the sublingual should be left in the mouth (best between gum and lip) for as long as possible to dissolve slowly. that is how you absorb it best! I can tell you that it will help so much in healing your nerve issues!

S

[PennyIA]

Just had to put in my 2 cents. My mother & I both registered as toxic on Vitamin B 6 - she was taking 50 mg per day for carpal tunnel, I was taking 50 mg per day with Folic & B12 for High homocysteine levels. Apparently, some of us have a much lower tolerance level. I've been mis-diagnosed on this issue for so long!  After my mother tested toxic on B6, I spent over a year arguing with my doctors to test my B6 levels, before they finally did - and sure enough I was toxic as well.  I was told it was virtually impossible to become toxic by taking only 1 OTC supplement a day.  NOT TRUE!

Recently my doctor had me start taking a daily multi-vitamin and I started having neuropathy issues!  I never even thought about the fact that the multivitamin contains B6. How much you want to bet I stop taking it and things get better? Thank you so much for all these posts - it's very helpful to read everyone's experience.

[Contessa765]

It has been months since I have written - my last posting I was in an upswing of what turned out to be very, very up and down experience. Although I only took a multivitamin 1or 2 times a day (25-50 mg.of B6) it was over about 4-5 years. My symptoms got to the point where I had walking problems, so from what I understand, that is an indicator of rather severe toxicity. I have been off B6 for over seven months now. Sometimes I feel normal and then my symptoms come back. I find this inconsistency so strange - does anyone else go through this? I had a rather bad bout in recent weeks. I developed diffuse aches and pains a few months ago, and here and there would take some asprin or motrin - it seems after a while this caused my toxicity symptoms to relapse - quite seriously - almost like when I first stopped the supplements. I have also had ill effects when trying to add some supplements back in - such as vitamin D ( for the aches & pains). Seems after about two weeks of something my body just rejects it. Has anyone else found this? I also still deal with major fatigue off and on and more recently, anxiety (no prior history). I guess I was overly optimistic about the textbook "six month" recovery theory. It would be encouraging to hear from any of those who posted long ago. I would be happy to correspond with anyone on this recovery experience.

[Savmay]

You are not alone in this experience. It has taken me three years and I still have some problems. What I noticed over the first year of healing is that I would have ups and downs and it got even worse right before it got much better. I think this is true for anytime you are detoxing. I was not able to add any B6 back in through vitamins (I tried a lesser multivitamin and it made me very sick again.) However, I badly needed to supplement with B12 and D. I found that because I stopped taking vitamins, because I was pregnant and then nursing during my healing time and because your body needs nutrients to heal, I became very deficient. I found that there were key components to healing:
B12 sublingual methlycobalimin (Jarrow brand best)
Vitamin D3
Zinc
Folic Acid
Other basic vitamins like B1, Vitamin C

My Naturopath had a special vitamin formula compounded for me that has no B6 in it. For me, this has been like miracle drink! It did take awhile to be able to tolerate it and I just slowly added more in as I felt that I could. Taking no vitamins is not a good idea. These other vitamins do not cause toxicity the way B6 can.

A good idea is to have  blood test to see where you stand on Folic Acid, B12 and D. Then you will know how much you need to take. Do you have a good, understanding doctor to work with? I find NDs to much better than MDs for this kind of experience. Feel free to message me directly if I can give you any support.

And yes, this is painful. I now have a month or two go by with no symptoms and then if i get sick, or overtired, I will start twitching and aching again.

Savmay

[Contessa765]

Thank you so much for your reply. I am curious as to what doses you were taking and for how long. I was on 25 mg for at least 4 years, and things got extreme when I went up to 50 mg two different times, but I was really going downhill the whole time not realizing my vitamins were the problem. As someone else mentioned, it is puzzling how you feel worse when you stop, so you think the vitamins are helping till you figure it out. Did you get to the point where you had great weakness in your legs? I am also curious how long it took (if you feel you are there yet) to get to where you would be able to work full time (if you wanted to). I know you endured all of this through having a baby - I can't imagine....

Thank you for the advice on supplements. I have been tested for all of those you mentioned - I am in range but I know my levels should probabaly be higher. I am working with a bunch of MDs - some "get it" better than others, and I do have someone who is a very well qualified nutritionist etc., and he is anxious to get me back on supplements. I have had terrible experience with this - had bad reactions to several things tried independently after about two weeks. The nutritionist I am working with feels I should be safe with a low dose of a very high quality supplement which contains only 10mg of the P5P (pyrodoxial  -5-phosphate) form - which is the active, more bioavailable form. I am scared to death to take anything! I do like the idea of compounding and will ask about it at my next appointment. The person I am working with is wonderful but I don't know if he really understands the hypersensitivity - he has suggested a psychological component....

On that note I would really welcome any more feedback from you or any of the others about experiences with adding supplements back in- especially those who had a serious bout with the B6 toxicity. Or hypersensitive reactions to any other medications. I am open to corresponding directly, I am just posting here so any further experience / advice or comments can be helpful to others who are healing as well. There is such a lack of information out there -especially about the longer term, lower dose toxicity. I have read all of your stories and sincerely wonder how everyone is doing.

[Savmay]

Well...i would NOT suggest taking anything with B6 in it. I did the same ( a low dose "natural" supplement) and had a terrible relapse. I have been able to tolerate all other supplements and I do think it is important to support your body with them.

In terms of leg weakness, Yes! I had that and arm weakness. I am still not back to normal but I am able to work almost full time. I am a massage therapist and life coach so my work can be pretty physical. I do still have twitching, exercise intolerance and I tire easily. I am hopeful this will continue to heal.

I would recommend considering the compounding vitamins. The company is called: Metabolic Maintenance.

warmly,
savmay

[Contessa765]

Savmay,
Thank you for your suggestion on compounding. I am looking into that and food source vitamins as well. In the interim I have been juicing lots of veggies about 2x a day - I think it helps somewhat with energy and I know the antioxidants are very important in the detox process.

To others:
I am working on a letter to the FDA - the public must be warned about the effects of B6 (pyrodxine). FYI: there are three forms of B6, pyrodoxine (in most supplements),  pyrodoxal 5 phosphate (the immediately bioavailable form), and a third form - pyrodoxamine; which was banned from supplements by the FDA in February. It is now deemed a drug and sold by prescription only. We are all suffereing from a long term, horrible and unnecessary illness. In my writing to the FDA I will reference this website, as I think it contains some of the most accurate information out there on the subject.

If you have B6 toxicity and have not yet posted, please do so! If you have already posted, please write an update on your condition. Hopefully if enough people speak up, the FDA can insist that vitamin manufacturers either lower the B6 amounts in their products and or include warnings that list toxicity symptoms. While this is clearly not the biggest problem in the world today, it is very fixable. Lives of many have been temporarily shattered. A warning on a bottle would have saved me long before I got so sick. I feel obligated to take some action and keep this from happening to others. So please, post here and or write to the FDA. Include your dose and how long you took it.

Best wishes to all and feel free to message me directly.
Contessa

[Savmay]

Thank you for writing that letter! I think that is an important step and one that can make a difference. I tell everyone I know about what happened in hopes of keeping someone else from getting sick.

warmly,
Sav

[Meganamy]

I thought I'd come back and update.

From October 2008 - March 2009, I cut out foods with moderate to high amounts of vitamin B. I got to the point where I only ate something off of this list every day of my life:

-celery
-lettuce
-chocolate
-sugar
-milk
-ice cream
-cheese
-yogurt
-whey protein
-eggs
-lemon bars
-honey
-olive oil
-beef
-strawberries
-raspberries
-prune juice


Eventually, I was also able to eat pasta occasionally in small amounts.

Then, accidentally, in March 2009, I discovered that if I took digestive enzymes with meals, I felt SO MUCH better. My pain decreased from excruciating to low or moderate. That was a huge improvement.

I went out and bought different types and brands of digestive enzymes and found one that helped me the most. It was the Nature's Plus brand entitled "Digestive Enzyme." I have no idea if there's something specific to my biology that my body wasn't ridding itself of the excess B6 in my nerve damaged areas or if digestive enzymes would help other people. I just thought it was worth posting in case it could help someone else as much as it has helped me.

Now, if I ever eat foods with vitamin B in them without taking a digestive enzyme, I get the pain again, so somehow the digestive enzymes help my body deal with things differently. But little by little, my pain is lessening so there's a light at the end of the tunnel.

I told my doctor about this and he tested me for Celiac Disease but the results were negative. For now, as long as I take digestive enzymes with my meals, I'm able to eat everything except for potatoes, corn or bananas and have minimal to no pain.

[Meganamy]

Thanks for writing to the FDA. Please, let us know if you need more help from me.

In April 2008 I had a blood test done for B6 toxicity and my levels were high but still in the normal range. According to the 18 different doctors I've seen now, there's no commonly accepted test for B6 toxicity.

My pain started during my pregnancy in 2007.

What I took that seemed to cause my health issues was:
-regular prenatal vitamins
-B6 supplements (I think they were 250mg)
-Venastat with horse chestnut root
-Metamucil fiber capsules

I took these 3-6 times a week (so, not daily) for about 15 months until I figured out that they were contributing to my pain.

[Contessa765]

Thanks for the update. That is very interesting about the enzymes. For me, the pain was not my main symptom but that maybe a big help to others. Did you have any other symptoms - like the muscle weakness or fatigue, and did you go through a "detox" phase (initially getting worse at first when you stopped the supplements)? Also, how much B6 was in your prenatal vitamin?

Glad you are doing better,
Contessa

[frootbar]

I just had a pyridoxal phosphate test done, and should have results in about two weeks.
I will report the result to you if interested.  I have taken some kind of B-6 for about 36 years now.  
The thought behind toxicity, is that possibly the liver is not converting the pyridoxine to
the P-5-P form, which may mean a phosphate issue in the liver, somewhere it's not doing the job.  So the pyridoxine floats around and is essentially toxic because it is not
in it's proper chemical form.  Some suggest the safe level is 50mgs. a day, no more.
Others suggest that up to 250 or even 500 mgs. a day are safe, especially if taken with
other B's.  I myself, do not believe that, that's just my own opinion after all these years.
It apparently is rare to get a toxic effect from over 115mgs. a day or so, but there are a
few case reports of under that amount being toxic.  Like anything, we are all different and
there is bound to be someone who responds badly to a smaller amount of pyridoxine.
A newer form available now as a supplement is I believe Pyridoxal, and is claimed to have none of the potential side effects of plain old pyridoxine hcl.  Chemically speaking,
it has been long suggested that pyridoxine changes to P-5-P in the body, so taking the
co-enzyme form is a waste of money.  However, I have heard of people using it and finding no apparenty toxicity issues.  
Dr. Roger Williams (deceased) said that stores of all B vitamins remained in cells for weeks and sometimes months.

fb  CN

[Contessa765]

You got me thinking about the enzyme thing...and I did some research on porphyria. Particularly the form called acute intermittent porphyria. Has anyone been tested for this? I know Karby (above/2008) mentioned her dr. wanting to test but did not post the result. For me it could explain some of my wierd symptoms that are not textbook B6 toxicity effects. Could be relevant for some of us who are poisoned at relatively doses. Just a theory but I'm going to look into it further...will let you know how it goes.

Contessa

[frootbar]

My pyridoxal phosphat test results:

Very high.

Normal range: 20-95 nmol/L
Result: 242

[Contessa765]

That does sound like a high number, but did they give you any feedback on what it means? I am quite sure that pyridoxal phosphate is the same as P5P (aka pyridoxal 5 phosphate, sometimes just "pyridoxal") -which is supposedly the usable, non-toxic form. Given that they all supposedly have a short lifespan in the blood, if you are not taking supplements now, my question would be - where is it coming from? It is my understanding that different foods contain the various forms (pyridoxine, P5P or pyridoxamine). Did they also test for pyridoxine?

I'm seeing a hematologist on Friday to discuss the porphyria question. Will follow up....

Contessa

[Meganamy]

Contessa765

I looked in my old daily prenatal vitamins and the B6 is 2.6mg, so, not much. But I was also taking a B6 supplement about 3 times a week (I really can't remember how much was in there, maybe 200mg, or 500mg) and I also took Horse Chesnut Root (to prevent varicose veins) and I have not been able to find out if that also has vitamin B in it or not but it sure does make my pain worse when I take it, so I suspect that it does.

In addition to my awful awful neuropathy, I had constant fatigue, and still have some. At my worst, I was off balance and would fall once in a while when I walked on uneven land (like a hill) but I was pregnant, so I blamed the balance issues on that.

Once I started taking digestive enzymes, I started having the bad vivid dreams at night and sleeping very deeply. When I take the digestive enzymes, my hands and feet tingle more. So I suspect that somehow the B6 is/was being stored in my breasts (where the nerve damage must have been from pregnancy) and gets dispersed to the rest of my body with the digestive enzymes.

I never did go through a detox period though. Once I discovered the digestive enzymes, I went from a constant 10 on the pain scale (where 10 is worst) to about a constant 3. I've been taking digestive enzymes with every single meal for 4 months now. Now, I'd say that if I don't eat food at all for about 18-24 hours, I'm at about a constant 1, so minimal. And then if I eat foods without digestive enzymes, my pain shoots up to about a 6 or 7, but if I eat foods with digestive enzymes, my pain goes up to about a 3, for about 6-8 hours and then back down to a 1.

The digestive enzymes that help me most are by Nature's Plus. They make many varieties but the ones that help me most are just called "Digestive Enzyme." I looked at the list of ingredients and tried to buy just the components so I could see what was helping me most. I ruled out pancreatin, pepsin and HCl. I suspect that what's been helping me with my pain is the malt diastase, also known as maltase. But I haven't been able to order only that enzyme without others in the mix.

Link to the digestive enzyme that I take:
http://images.google.com/imgres?imgurl=http://ecx.images-amazon.com/images/I/31PAXQEZ0EL._SL500_AA280_.jpg&imgrefurl=http://www.amazon.com/Natures-Plus-Digestive-Enzyme-tablets/dp/B00014DY4Y&usg=__rObqY_mk5w7lrU8wkE9Hoz2QjFs=&h=280&w=280&sz=10&hl=en&start=1&tbnid=vP0Jn406pU-cFM:&tbnh=114&tbnw=114&prev=/images%3Fq%3Dnatur%2527s%2Bplus%2Bdigestive%2Benzyme%26gbv%3D2%26hl%3Den

Megan

[jholley]

I experienced peripheral neuropathy after taking 100mg of B6 (pyroxidone) daily for several months. This past winter my hands and feet got the numbness effect like never before. My hands would tingle anytime I bent my arms or put pressure against them. The nerve damage also gave me insomnia. I stopped B6 in April, 2009, and the symptoms have slowly decreased. I'm now falling alsepp much easier than earlier this year.

Another effect peripheral neuropathy might of caused is hair loss. I formally had extra thick hair due to the highly nutritious diet I eat. Now my hair is so thin I'm using gel for the first time in 20 years.

Has anyone else noticed hair loss from peripheral neuropathy?

[Meganamy]

Just a short update. My B6 toxicity symptoms seemed to be subsiding over time. I still had pain after eating potatoes and anything containing soy lecithin, but was doing better in general and had a light at the end of the tunnel.

A month ago, instead of resuming a multivitamin, I started taking some vitamins separately: C, Iron, Calcium and Folic Acid.

After that, my B6 toxicity has worsened again and I'm in constant pain again, especially after eating any foods high in Thiamine (B1), Niacin (B3), B6 or Folic Acid.

The C, Iron and Calcium do not cause me pain, but I was surprised that the B9 did. I've stopped taking that. Sadly, it's still in many cereals (they're all fortified) and breads.

jholley, FWIW, I have never noticed any thinning of my hair during any of this, but have definitely had increased fatigue and trouble sleeping.

[Contessa765]

I am still working on a difinitive diagnosis or rule out of porphyria as having a role in my B6 toxicity - a question in my mind as I am still very sensitive to any supplements (w/o B6) and other meds. Even the juicing caused me problems after while - seems things just build up in my system. Still working on ruling out porphyria as having a role - anyone with questions on testing let me know - I had to corresond with one of the top experts in the country in TX to get to the bottom of how to test. I am trying to get an apt. with someone at Mt. Sinai in NYC who specializes in porhyria.

I have noticed thinning of my hair through this - especially about 3-4 months after my worst phase. I think this is common after stressful events, such as illneses and surgeries, and should probably not be permanent. B6 is also involved in hormones, and hormones influence hair growth, so that could also be a possible factor. This is one of the big challenges with this toxicity - B6 is invoved in over a hundred different chain reactions in the body, so it is really hard to know what is going on.

I am one year off B6 at the end of Sept. I still go up and down. I am not able to work, still have leg weakness, feet that ache severely after standing a while, neck and shoulder pain, spells of feeling spacy, brain fog, abdominal pain (for a year now, left side, with normal cat scan) eye problems ( severe dryness, can't be on the computer very long- eyes feel "weak" - anyone else have this?) also spells of respiratory weakness. I still have the pins and needles feeling in my feet at times (worse with cool weather) , and some numbness in my finger tips, along with tachycardia that comes and goes, and I am still quite fatigued. The weird thing is, there are periods when I feel normal for a while and then symptoms relapse - anyone else experience this?

My neuro isn't even convinced its B6 toxicity - he seems to not know about all the ways B6 can mess with a person. I am also seeing a new neuro at Mt. Sinai who hopefully knows more about this.

I really do think from all my research that long term, slow, low dose( 25- 50mg)  B6 poisioning is different from high dose poisioning. I also think more is known about the high dose poisioning because those cases are more easily diagnosed - people taking these high doses are often under a drs care, and hence the side effects more frequently reported. People are more inclined to know they're doing something different, and stop sooner. Also, the test studies are usually done with higher amounts, and the "subjects", human or otherwise, discontinue B6 at the onset of symptoms. (hence all the info that says subjects recovered completely w/in six months).Noone is studying people who have inadvertently been poisioning themselves for years. And I know I'm not the first to have a dr dismiss the notion of B6 toxicity becuase of taking such a "small amount". Not that the high doese poisiong sounds any less horrible, just making the point that Drs are just not aware of the fact that this can affect people very differently, and dose and length of time taken is probabaly a big factor.

Just venting some frustration and sharing my continued experinence, in hopes that it might be helpful to someone. I really appreciate all the feedback on this site, and would be happy to hear from anyone else going through this.

Hope everyone is doing better,
Contessa

[jholley]

Three weeks ago my neuro prescribed me Trileptal. I started off taking 150mg per day and am now taking 300mg per day. This is one of the anti-seizure drugs that can also treat peripheral neuropathy. Within a week of taking this drug the numbness and tingling went away. I'm now falling alseep within minutes and I'm picking up much less hair after those showers.
My neuro said I'll just need to take this for around 3 to 5 months while my nerves slowly heal.

[cln1812]

I am thankful for everyone posting here.  I find the lack of information regarding B6 toxicity so frustrating.

I too have been diagnosed with B6 toxicity (June 2009).  I believe my problems started due to a prolonged period (around 7 or 8 yrs) on combination estrogen-progestin birth control pills.  After years on the pill, I began to have problems that I now believe were caused by a deficiency in B6 (panic attacks, horrible swelling and water retention in my legs).  I noticed finally that I felt better if I took a multi-vitamin but even after several months on the multi-vitamin, my symptoms didn't subside, and I finally quit the pill in May 2006.  Reading up, I discovered birth control pills often cause a deficiency in B vitamins, so I started taking a more potent multi-vitamin containing 80 mg. of B6 daily.  For awhile, I felt better, and then I just started feeling worse & worse.  I now think something about being on the pill (or maybe being deficient in B6) sensitized my body to B6.

I began to have all the classic symptoms of B6 toxicity--panic attacks & high anxiety, tingling (especially in the extremities), a most horrible fatigue, brain fog, gassiness, nausea, depression, etc.  I went to my PCP multiple times and was basically ignored.  (I do have a past with depression & eating disorders but had been in recovery some years.)  I was treated like a hypochrondriac and sent to a psychiatrist.  I later consulted a rheumatologist thinking maybe it was fibromyalgia, and she did some blood tests (but not for B6) and nothing showed up.  Finally, only a few months ago, I sent myself to a neurologist (thanks for not referring me, doctors!), and she did test B6 levels as well as ordering MRIs (the MRIs came back clear).  Basically my B6 levels came back off the charts--the neuro. said normal range was something like 2-20 and my levels came back over 200!  She told me to stop my multi-vitamin and not to eat cereals, energy drinks, etc. fortified with B6.

But why wasn't this tested ages ago?  First, I was complaining repeatedly in 2005 when the problem started (which that time I believe it was the deficiency in B6).  Every time I've gone to the doctor, when they ask you to write down your medications & supplements, I listed the multi-vitamin right in the paperwork and it was basically ignored and I was made to feel like I was imagining my symptoms.

What really angers me is that between all this, I was pregnant with my daughter (and yes, put on a prescription prenatal vitamin containing B6), I was told to take a multi-vitamin while breastfeeding my daughter (she is still breastfeeding at 21 months--much less now but she has been an extremely high needs baby and I do wonder if B6 played any role in this).  Thank God my daughter appears to be developing and meeting milestones correctly (other than being on the low end in weight but I am on the small side & DH is quite thin too so that may just be genetics) because I was pregnant & breastfeeding her with B6 toxicity without knowing it until she was 18 months old.

Obviously, I stopped my multi-vitamin in June 2009 after finding out about the B6 toxicity and am careful to buy cereals not fortified with extra B6.  My husband has remarked that lately my skin seems to have better color & I'm less pale and look healthier, but I still do have many symptoms of the B6 toxicity.  I know B6 & estrogen interact in some way and breastfeeding isn't helping matters (keeping estrogen levels lower) but I did always plan to let my daughter self wean and I figure any damage from the B6 in my breastmilk is likely done and there shouldn't be too much in there now that I'm not taking a multi-vitamin.  At this point anyway, DD is mostly comfort nursing and not drinking all that much breastmilk.  It helps with the 2 yr. molar teething, and that is the only thing that seems to help calm her crankiness.

I have found very little to consistently help with the B6 toxicity.  I do notice the effects of it seem to correlate with my menstrual cycle (I'm not dumb enough to do another round with hormones so I have a nonhormonal copper IUD).  The thing I have found to help the most is vigorous exercise, so I go to the gym and lift weights and do cardio 6 days a week.  I'm trying to eliminate the caffeine (the constant fatigue makes it hard) and making more of an effort to get my nutrients through diet & not vitamins (especially since I can't take a multi-vitamin because one does not exist without B6 in it).  Acupuncture seemed to help a bit as does chiropracty.  I have low back pain I think may be related to the B6/low estrogen/post-pregnancy, take your pick.  But sometimes after the chiropractic adjustments, I will feel burning & warmth in certain areas and it feels like muscles or ligaments that have just been so tight relax (muscle relaxers don't work to relax them, believe me, I tried those too).

For those of you who have been off the B6 awhile, what separate vitamins do you recommend taking to help with the B6 toxicity?

Interestingly, a couple months after I tested positive for B6 toxicity, my husband started complaining of an overwhelming fatigue and he was sleeping all the time (it was what I wanted to do with the B6 toxicity but with a baby to care for couldn't).  I knew he took a multi-vitamin with about half the B6 as the one I had been taking (40 mg.) and he was inconsistent with it, would skip days or a week here or there.  I told him he should ask his doctor to test his B6 levels when he went in for his thyroid workup (he has been on thyroid meds. since he was a teenager).  He did and his levels came back high too!  Not as high as mine but way above the threshold for normal.  This is not an isolated problem, and I just know so many others are out there suffering with this and being dismissed as hypochondriacs by their doctors.

Cheryl

[Contessa765]

Thank you for posting - it is so helpful to her from others. It is amazing how many have toxicity at "low" doses. I am so frustrated that I never had a correct blood test while on the supplements, so all my doctors still think I am nuts.

As for supplements, a combination of acetyl-l-carnitine and alpha lipoic acid is well documented for helping with nerve pain and healing, as is B12. (See Savmay's posts above.) Personally, I have not really been able to tolerate anything, but everyone is different. I previously reacted very badly to they B12 methycobalamin sublingual (takling a whole tablet- which is about 16,000% of the RDA).

Recently I have been taking D-Ribose (Jarrow or Corvalen brand is best) - 4 grams 2x day and a crumb of the B12 tablet 1x daily. This is working wonders at the moment. The D-Ribose helps with energy and muscle endurance, and after a week I notice my leg weakness seems much improved. So far this is the only protocol that has worked for me-time will tell....

Regarding the interaction of B6 and hormones, I wish I knew more. I do find odd correlations with my menstrual cycle, I seem at my best late in my cycle, post ovulation & before my cycle starts. Sometimes the day before it starts my nerves feel fried, my leg muscles are especially weak and I am unusually fatigued. I have noticed that my cycle has gotten longer through all this, and that I often feel quite low at the end (days 10-14). I believe this is when hormone levels are lowest, especially progesterone. Again, everyones levels are different, but I have wondered at times is anyone else has this up and down nuture to their symptoms and some predictability in flare ups tied to their menstral cycle.

On another subject, as I am increasingly frustrated with my inabailty to work as time goes by - I keep thinking -shouldn't the vitamin company bear some liability for this? I am giving serious thought to legal action - at least to cover lost income and the basic destruction of a successful careeer. I have no idea if I will get anywhere, but it seems we should all be entitled to restitution. I wonder if anyone else has explored this. I will post any developments and also I am offering support to anyone else seeking to pursue this process.

Contessa

[Savmay]

I too have noticed my symptoms changed with my cycle. Now that I am 75% healed, I still have a minor relapse of symptoms during PMS and right after my cycle. This makes sense from an inflammation perspective b/c inflammation is higher during the PMS stages. I am so grateful to be "almost" well! I can exercise, work and sleep! My minor relapses are not enough to cause significant issues. Just some buzzing and tiredness in my legs/arms.
I hope for complete healing for us all!

Savmay

[amberizme]

My six month old son has had stiffness in his legs, and now a tremor. They were looking at Cerebral Palsy, but I recommended checking vitamin B because my mom is deficient in B12.  The doctor did a check and found my son's B6 and B12 are ELEVATED.  Nobody knows why, and I only found out from the nurse. Haven't spoken with the doc yet. She is waiting to call until she hears from the specialist. I am just wondering if the tremor in my son's legs (only occasional) are part of this B6 thing.  I don't have a clue and I am so upset right now I can't think clearly.

[Betsy1122]

I had been complaining about burning feet and legs, and a high sensitivity to any cloth touching the skin of my knees.  I got tested for vitamin B6 levels and it came back over 100.  My neuro told me to check all bottles of supplements I had been taking and to stop any of them that had vit B6 in them.  I checked my calcium supplements and was horrified to see that 2 pills contained 500% of the required daily amount - and I was taking 6 pills a day!  The cereal I had been eating at 25% of the daily value, and my multivitamin had B6 in there too.  I have been off the supplements and cereal for a little more than a week now.  I expected to feel better right away, but after reading more about it, I realize that's way too soon.  I just hope I haven't caused myself permanent damage, because I can't stand the thought that I will be feeling like this for the rest of my life.  Sometimes when I'm in bed at night I have to hang my feet over the side because just the pressure of the mattress on my heels is painful and keeps me awake.  I have stopped eating avocados and bananas because I read they have lots of vit B6 in them.  This website has been very helpful.