I just wanted to jump on here and warn that there was a lot of quackery on this thread around pages 4-5 by 'gerrysmom' and some others about alternative medicine. I wont blame them because that was the hottest information back then but now things are different. I am in a large b6 toxicity group where we have disproven all of this information.
OATS test... quackery
Hair testing... quackery
cellular malabsorbption... quackery
conversion to p5p.. quackery
As a general rule of thumb if you see a website with the words 'holistic', 'natural', 'green', 'alternative', etc or it is on a blog or it doesnt link to peer reviewed scientific studies in a reputable medical journal, it isnt reliable.
Also, experimental labs like 'doctors data', 'metamatrix', 'great plains', 23andme, etc are not reliable and the information is heavily misused by fake doctors to sell supplements. I cannot walk into one of these 'doctors' office without having to leave with a basketfull of 10 supplements and 5 more fake tests. All this genetic testing and wierd labs are a scam. The naturopathic doctors are there to make money and are agents of the supplement companies kind of like people think of doctors and pharmaceuticals.
Dont fall for it. If you want to test if you have functional deficiencies of B12, folate, b6, etc, get the MMA and homocysteine tests - these are the gold standard. There is no problem converting to p5p - what you measure in your blood test is p5p, not the other forms. Most likely nobody here should or will ever take any form of b6 ever again for any reason.
Do NOT use OATs or hair tests to determine b6 status. OATs is only a reflection of daily intake and is highly innacurate. Almost all of us who have had OATs had them tell us that we were low. That is because everyone who takes the OATs test sees that they were low, and a lot of other results are very similar to anyone who takes OATs. It is a scam. Hair tests show nothing about what is going on inside the body with vitamins and minerals. Another scam. The plasma B6 (p5p) level is the gold standard for measuring b6 status.
23andme usage - another scam. All this stuff about SNPS is a bunch of psuedoscience. None of these bold assertions about what your SNPs are doing in your body or how to treat it with supplements has been proven with proper science. It isnt even accurate. I got genetic testing from a different company and some SNPs were different. Furthermore, you dont know if this SNP is even expressing, and if it is expressing how it is effecting your body. Take folate for example - there are something like 2000 other folate metabolism genes and not just MTHFR. Your body has been compensating your genetics your entire life. You got through the first +-20 years of your life just fine without any supplements. What changed? You ADDED suplements. You added crap.
If you got toxic by taking massive doses of b6 like 10mg or 200mg+ then there is no problem with b6 being metabolised/used. That is because these massive doses of b6 are never used in anyone to begin with. The body has no use for anything over 2mg of b6 per day. Its not included in your metabolism. The rest is just excreted in the urine, or stored in the tissues. Your problem was that excretion isnt working or the tissues got full. Usually this is precipited by dehydration and medication use, following years of b6 supplement use.
Most of us are damaged by b6 and that is it. p5p damages cells with caustic chemical bonds. p5p in the brain binds to gaba receptors. p5p impairs detoxification. p5p actually binds to the pyridoxal kinase enzyme and slows down its own metabolism. People think b6 is the culprit but its actually p5p.
Now you are saturated with p5p and your job is to detox, and then heal your nerves. Long recoveries, waves, and setbacks are to be expected. If you experience this, it is not a doubt of b6, as has been suggested. It is normal. Detox takes time. Nerves take time to heal - a lot of time. The amount of time you were taking b6 will play a big part. What is going to help you most is hydration, hydration, electrolytes, low or rda b6 diet, and eventually slowly and consistently adding excercise. If you exercise and then have a huge return of symptoms the next day, you are going too fast and need to go even slower.
Im not saying everyone here has b6 toxicity. However, we shouldnt discredit what b6 toxicity can do in those who are actually toxic. These people have a long road ahead of them and giving them doubts and a bunch of woo and supplement sales pitches or especially telling them that they actually have a deficiency isnt helping.
Those who think theyve found some other answer other than b6 toxicity should think really hard about whether they want to re-add b6 back into their diet, or any supplement. Supposedly harmless supplements got us here and the first place and taking more is just rolling the dice again. A rule of thumb supplementation is it should only be done in small amounts to correct deficient blood levels, if foods have failed. If the supplementation is b6, then very regular testing needs to be done. I saw someone here say they added back in the same amount of b6 as when they got toxic. I hope they are monitoring their levels...
just found out my level was 142 (2-21) range.
My symptomay are mainly a burning of my skin - tops of hands, feet, thighs, cheeks, ugh. I hope stopping the supplements and eating a low b6 diet helps.
I think I am getting a bit depressed from all of this not feeling well.
Testing for everything including MRIs.
Only other think it could be is menopause or lyme - band 41 is positive for igg
I was taking the 5p5 version of B6 so I don't think this is accurate. I would stay as far away from B6 as I could.
Almost a year after i quit taking b-6 the tingling, burning hands and feet and insmonia, fatigue, twitching, balance isues etc. finally started to clear. I was eager to get back to working out. I did 4 moderate work outs over 2 weeks and all the symptoms came back strong. It seems to me that it cycles regularly, good days bad days good weeks bad weeks etc. You have to look at this long term as long as youre progressing you are doing ok.
Sorry to hear your having a tuff time to, this is definitely a yo yo recovery, but I'm feeling a bit better this week. I have found that when I'm doing Manual work I feel better, but it is tuff to get started. Through all of the testing I've been through I tested positive for 1 copy of the mthfr gene. I don't process follicle acid/ b-9 very well. I assume I don't process b-6 well either. I think when we figure this all out we will find several components that lead to this situation. Hope your feeling better soon.
Hi Mulchman - sorry to hear of your setback. I am six months out and going through a relapse myself. I got gastro and this has really brought on muscle aches, extra twitching, nerve pains, and feelings of weakness that I thought were going away.
The good news is that this yo-yo recovery has been reported before by others on this thread.
I have a hobby farm, and I like manual work, but lately I just want to lie on the sofa.
Keep us posted!
Any others got any encouraging news?
Thanks for telling me about the LEAP diet. I'm looking into it now. I do have a ton of environmental and food allergies, so I'm interested in hearing more about this.
Did you need to have a Dr prescribe these blood tests?
I did try a gluten free diet. My Dr also tested me for Celiac's disease and the results were negative (I do not have it). I am able to eat gluten with no more issues than eating anything else with the same amount of vitamin B in it.
I've tried a ton of digestive enzymes. The ones that work best for me are by a brand called Nature's Plus. They just say "Digestive Enzyme." I order them from VitaCost.com and they ship them to me, but you can also find them at Vitamin Cottage. Here's a link:
I've taken some of the ingredients in them by themselves (pancreatin, HCl, Papain) and they didn't make a difference. By process of elimination, I think it's the Malt Diastase that has been helping me but I can't seem to buy that on its own.
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.
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
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.
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!
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!
Hi, in Oct 2016 I began experiencing weird neurological symptoms...I was 3 weeks postpartum with my third child. After months of testing to rule out MS, cardio issues, autoimmune diseases, etc etc, my second neurologist tested me for nearly everything that could cause small fiber neuropathy and found my B6 level was over 5 times the max of the range (112 on a 2-21 scale). The toxicity was found in Feb 2017. I was taking a prenatal vitamin with 25mg B6 every day for about a year. Ironic thing is I decided to get a high quality, prescription strength prenatal from my OB instead of over the counter (which only has 2-3mg B6). If I only knew...
I stopped the prenatal right away and symptoms have ebbed and flowed since then. Recently, nearly 3 months after stopping my prenatal and 3 weeks after starting my period since pregnancy, I had a major setback. I could barely move and get out of bed for three days. My husband had to take time off work because we have three small kids and I couldn't care for them. I'm seeing a naturopath on Thursday and I'm excited to get some tips on how to detox.
For the women in the group, do your symptoms tend to ebb and flow with your cycle?
My symptoms include light-headedness (feels like I'm walking on a boat), tingling/burning tongue, lower back pain, numbness/tingling/buzzing in feet and legs, numbness on right side of face and chin, blurry vision, insomnia, heart palps, exercise intolerance, and arms and legs ache with the slightest exertion. My symptoms get much worse when I'm tired, hungry and when I've done too much in a given day.
I am really glad I found this group. I have been having many strange symptoms for the past 7 mo. Neurologist is not convinced it's the b6, which was almost twice the upper limit when tested last November. My symptoms are mostly on the right side. The bottom of my foot is tingly and I get pains in my calf and the sciatic nerve. Also, my right atm feels like there is plastic wrap around it and my is a little stiff. Lately I have had really tight muscles in my upper right back and neck area. I also get palpitations and lightheadedness sometimes. MRIs have ruled out MS....wonderingvif someone experiences symptoms mostly on one side of their body?
I am in search of a newly diagnosed condition called B6 Toxicity. Anyone who has experienced this (severe symptoms of nausea, loss of appetite and dizziness on occasion). Please...help.
My eyelid would twitch when I took a small amount of B6. However, I learned I could tolerate P5P (active B6) with no problem. Then I read an article by Dr. Werbach that explained this. My body was having trouble converting B6 into its active P5P form. The large amount of B6 was taking up the receptor sites for the active form. So, essentially, my cells weren't getting enough of the active B6. This is what was causing the toxicity from the regular B6 supplementation.
I've since learned why my body was not converting B6 into its active form. You need vitamin B2, thyroid, alpha ketoglutaric acid and magnesium for this conversion. In my case, I had aluminum excess and yeast overgrowth. Both were interfering with alpha ketoglutaric acid, and hence were interfering with this conversion. The aluminum interfered with alpha ketoglutaric acid. The yeast overgrowth produced acetaladehyde, which also interfered with alpha ketoglutaric acid.
Alcohol also lowers acetaldehyde. Hence, alcohol also gets rid of alpha ketoglutaric acid and can interfere with the conversion of B6 into its active form. I rarely drank alcohol, so this wasn't my problem, but I mention this in case someone else is wondering why they have trouble with B6.
Took over 100mg pyridoxine and b-complex a day for almost 2 months. At first I started to experience pressure in my nose. Then I started to get tension headaches and tingling in my face, scalp and neck. I see many have experinced tingling in feet and hands, I havent felt any of that. But I got heart palpitations. At the end of the 2 months I took the b-vitamins I got severe dizzyness and the above symptoms, plus i got sexual side effects like low libido, pleasureless orgasms, and low appetite. I have also have fatigue, tired all the time. Does someone else have experienced sexual side effects like genital parasthesia or other symptoms, and how long did it take you to recover? I have been off of b6 for about 3 weeks and many symptoms have lessened. The symptoms that remain are fatigue, a little tingling in my face and I still feel a numb feeling during orgasm but somewhat better.
I got toxic on 50 mg for 2 weeks some got toxic on 2mg etc.
Hi! I started taking vitamin b6 about 3 weeks ago. In a couple days I started feeling bad, dizzy, tingling on hands and feet, was hard to walk etc. When I stopped I started feeling much better and I went to have some alcohol with friends for 2 nights. I dont know what happened but I have been feeling terrible since then. Cant sleep because of inner shaking and tingling weakness. Its really bad..
I'm sorry. How are you feeling now? Are you better?
Just diagnosed with toxicity...74....from too much supplementation...first brought on by a doctor several yrs ago? Never questioned it. I am now convinced that I never needed b vitamins and that magnesium deficiency was my problem. I wish I would have been smarter. NEVER took supplements before except when I was pregnant. Seeing all these posts, I now wonder too, if my prenatal vitamin played a role in my migraines and severe abdominal pain while I was pregnant...in addition to very high blood pressure from...severe anxiety....and probably low magnesium. To tell you the truth, I had pitocin too and that is what I feel like now...severe burning all over my body, in my tongue too, severe coldness, shaking. I've always been cold but this is ridiculous. Some pins in my big toe and severe anxiety. Very pissed off. My neurologist removed all b vitamins but he isn't completely convinced it is all my problems. I also developed erythromalalgia several yrs ago....BUT, that also started with the b6...so did it trigger the erythromalalgia? Now I wonder but can't really find any literature to support it. I've had vascular issues all my life...very very cold extremities and nose, that have just progressed to this...I guess. I can remember weird vascular things as a kid so who knows. Also have Meniere's so my nerves are shot anyway. Just a tentative diagnosis too of SICCA Syndrome but I wonder now...b6!!!
Just had the biopsy for small fiber neuropathy...hoping for a negative. EMG normal. NO autoimmune anything. I should be the picture of health.
Just a few weeks off b vitamins. My left foot skin feels more normal now...skin felt like a plastic bag...not a sock feeling. I feel more comfortable with socks on. I actually feel really good when I walk on the treadmill. Not really any fatigue. Never had any numbness really except when feet very cold...which is my normal anyway. Hoping to heal. Scared.
I'm burning everywhere. Very depressed over this. My b6 was 13 before a doctor got hold of me.
Hi Thanks for the update. I needed some good news. Can I ask what your levels were to begin with and what dose of b6 you were taking? My level was 74.
for me personally it took about 4-5 weeks to feel fairly normal again. But after about 18 months or so i currently have a "flare up" to my dismay. Paresthesias and clammy hands and feet. Very irritating. And yup, i was worked up for other diagnoses such as MS like so many people here.
I got B6 toxic 2 years ago by taking Emergencee supplement. Tingling all over, temperature regulation problems, jumping muscle twitches. Got thorough near work up including brain MRI and all was good.
Went 2 years without symptoms but recently was taking NSAIDs for other pains and noticed my B6 toxicity symptoms returned. Ive read that NSAIDs can LOWER your b6 levels, but am wondering if anyone heard of it causing a rise in B6??