Pre-B6-Toxicity-Diagnosis Horror Stories

Kelela P.

My story begins in 2012-ish with weight loss. I started drinking water flavor drops, 0 calorie sparkling water, and electrolyte drinks while experimenting with fasting. I assumed that I would pee out any excess vitamins. Some of the drink flavors had very large doses of B vitamins. I also tried various supplements over the years, some multivitamins that had B6, and some magnesium that had B6. I began lifting weights to build muscle and improve my metabolism, so lots of chicken, lean beef, and lean pork providing b6 naturally. 

My first symptom was maybe 2015-2016ish with fidgeting while watching TV at night. After a several months, I realized it was because my feet were warm, so I would get up and rinse them off in cool water or I would lower my entire body temperature by removing blankets or clothes, until my feet cooled down too. After probably a year of that, my feet started getting much more noticeably hot and red, only at night, usually after dinner. But fairly infrequent. 

During 2017-2019 I also got a professional certification, planned my wedding, planned my honeymoon. I developed severe IBS, a colonoscopy diagnosed me with autoimmune lymphocytic colitis. I finally controlled that by removing dairy. So money and time constraints kept me from pursuing the feet symptoms. As feet flares became more often, I asked all my friends, I asked two primary doctors, and two gynocologists. None of them had any idea what would cause feet flushing. It was not painful, just uncomfortable, so the doctors said it was nothing to worry about. I did have my routine physical exams, routine bloodwork, and routine well woman exams. I also tried stopping alcohol, stopping caffeine, and stopping various supplements, but nothing conclusive helped. Internet searches came up with “peripheral neuropathy, no cure”.

In 2020 I also got diagnosed with autoimmune hashimotos thyroid disease. Though looking back at blood work I had probably had that for several years, but no doctor thought it was worth mention until 2020. But lab tests going back many years showed antibodies. As time went on, the flushing, heat, and redness in my feet got more frequent. I eventually bought ice socks off of Amazon to keep in my freezer, because that would usually stop a flare quickly. 

In early 2020, yet again tried to search the internet with any terms I could think of for feet flushing or hot feet at night. I finally found a group talking about erythromelalgia. That sounded like exactly what was going on with me. From that group, I learned that my problem could be due to a genetic mutation, or it could be secondary to other more serious conditions like lupus. I didn’t take action as we were all in lockdown and scared to even go to a doctor. Over that year my feet became less responsive to even the ice socks. 

Summer 2020 brought more setbacks as I caught Covid from an overdue eye exam. I developed daily nerve pain headaches post Covid. At first I thought it was neck tension but a couple months of chiropractor didn’t help, and then my primary dr gave me amitriptyline which helped. I also randomly developed bad face rosacea in December 2020. Once headaches controlled, and after vaccination in 2021 made me more confident to leave home, I pushed my primary dr to refer me to a cardiologist for feet flushing. It was so hard for doctors to take me seriously as the flushing never happened while at their office. I took tons of pics. The excellent cardiologist agreed I have erythromelalgia, but he also highly recommended I see a rheumatologist to rule out lupus. I cried from relief that day because someone finally took me seriously and I wasn’t crazy or just unlucky to be aging faster than normal. My rheumatologist ran a bunch of blood tests and immediately caught the b6 toxicity.

That night I threw out all drinks and supplements with b6, but my doctors all told me not to worry about b6 in foods. I saw some improvements immediately with flares becoming less intense and less frequent. Also the skin of my feet was less blotchy. I eventually realized the nutritional yeast that I used for non dairy cheese flavor also has b6 because it’s fortified. Over a couple months I ate through the last of the chicken, pork, and beef in our huge freezer, and also cut avocado and big spinach salads. I tested new recipes with tilapia, shrimp, and lamb to get accustomed to lower b6 protein meals. November 2021 I finally began eating only RDA b6 daily.

Sunny M.

I just got my B6 test results back and I’m a mix of emotions (long post ahead/my story/some questions)I’ve been unknowingly having B6T issues on and off (mostly on) since 2003. Minor then, progressing as time went on (because I added more supplements as I felt worse thinking they could only help).

My symptoms really came to a head around May 2021. By this point, I had neuropathy in my legs (that started in 2003 as my first unusual symptom–a “water retention” feeling without visible swelling, plus heavy legs and nighttime calf cramps), new neuropathy in my arms/hands, “shards of glass/putting a cigarette out on me” nerve zaps all over my whole body, INCREDIBLE brain fog, chronic fatigue level exhaustion, horrible joint pain, etc. It came on rather suddenly and I assumed the nondescript auto-immune type issues I’ve had my entire life (that docs suspected was fibromyalgia or Psoriatic arthritis– which could still be happening on top of B6T–who knows…) were really getting bad and what started in May was the worst flare I’ve ever had. That’s when I started making appts with my doc to figure out what was happening because it was that debilitating. This flare lasted 3 months–until August.

(As an interesting aside– it started with sun sensitivity which is very unusual for me, my melanated skin never has issues with the sun. I was out in the pool/sun, got a rash, then the neurological/pain/fatigue symptoms began shortly after. At the time those symptoms seemed to point toward psoriatic arthritis but now I believe it was actually B6T).

And of course, during this time I made SURE to not miss my daily supplements thinking that would help–it likely made things worse. My doc kept asking me if I took B complex (because my symptoms sounded like a deficiency) and I’d tell her yes, not only that, I take higher doses of all these other separate Bs also. She’d say “oh, that’s great!” and never thought to test my B levels anyway. My blood tests all came back excellent except for mysterious elevated hsCRP. But we couldn’t figure out where the inflammation was coming from. All summer I’ve been trying to get to the bottom of my health flare like I’m HOUSE, lol! I was also feeling worse and worse.

I decided in August to go on a strict elimination diet to see if I could narrow down what the issue was (I also have G6PD enzyme deficiency which is triggered by diet so an elimination diet made sense to see if that was irresponsible for all these issues). Plus I committed myself to daily exercise because it’s supposed to be good for psoriatic arthritis. When I started the diet I also stopped all supplements (because some contain PG & PEG which are G6PD triggers. So are things like NSAIDs–which I took Naproxen daily for 2 weeks in July because my joint pain was getting BAD and I thought if it’s psoriatic arthritis naproxen would help inflammation. I had a HORRIBLE reaction to it which likely was from the G6PD–so all these things happening at once were really hard to sort out!). 

Long story short, the first thing I added back after I was on my elimination diet for 3 weeks and feeling FANTASTIC (elimination diet/exercise coincidentally looked a lot like the B6T protocol!) were my B vitamins (including a 100mg B6). The neuropathy, joint pain, extreme fatigue, etc. came back immediately full force. That’s when I knew something was up with my supplements. I had taken a multivitamin off and on since this started in 2003, added B-complex probably 3 or 4 years ago (and I bought different brands and never checked to see how much B6 each brand had).

Then in late 2019/early 2020 I added 100mg of B6 daily. It never dawned on me to check to see if that was too much because like most people I believed the common misinformation that you pee out the B vits you don’t use. I was also taking Methyl B12 in high dose, Methyl folate, and a couple other Bs too. I’ve been taking lots of Magnesium daily since 2003 when my leg issues started thinking it would help (it also helps keep me regular). About 5 years ago I discovered electrolyte salts/salt in general and that *really* helped with my leg issue–not completely but better than anything I’d tried before (little did I know then WHY!).When those symptoms returned I started googling more about each B supplement I added back and discovered B6T which is the first thing I’ve come across that fit my ongoing symptoms to a T.

I scheduled my own B6 blood test as soon as I could and my results JUST came back today 3 times the upper limit. I’m RELIEVED that I finally figured out the bulk of my issues (I still have a couple other things going on but those symptoms are minor compared to this). But also PISSED that this has been going on for FIFTEEN YEARS! And I had no clue. No doc caught it. I’ve never been tested for any vitamin level except D. And that was just once when I asked specifically for it (that was 3 years ago– I was deficient). And I’m also upset that what we’ve all been told about Bs–you pee them out–is flat out WRONG.

I’m going to be asking my doc on my next appt in 2 weeks to test all my Bs because I was also doing high doses of 12 and folate and who knows if those are wonky too. I know the B6T protocol from reading this group (similar to how I’ve been eating with just a few minor adjustments) so I’m good there–I’m starting STAT. I also know to expect a long journey with ups and downs. I do have a couple questions, however–

  1. How severe is my level? It’s close to 3 times the upper limit AND I had been off of B vits for about 3 weeks prior to the test for my elimination diet (except that one day I took it & got sick). If my doc isn’t familiar with B6T I want to be able to give her a gauge of how bad this is (i.e. run of the mill B6T vs REALLY BAD. She’s a good doc & super responsive to stuff she isn’t familiar with. She listens to what I tell her and does her own research based on that–then she always ends up on the same page I am and proceeds accordingly)
  2. I’m thinking back to when this started in 2003. I was NOT taking B vits then. I didn’t start B complex until 5 or 6 yrs ago and B6 only in the last year and a half. But I did start low carbing then (similar to what everyone calls keto now– low carb, high fat, moderate protein). My first symptoms were the leg cramps/heavy legs that many people get eating that way. So I tried potassium, magnesium–that seemed to help everyone else. It helped me a little but not much. Although I feel great eating this way (grains & sugar don’t agree with me) the leg thing (which now I recognize as neuropathy but I didn’t then–I thought it was water retention or electrolyte imbalance or something) has been a continued problem ever since off and on whether I was strictly low carbing or off the wagon (it did seem to get MUCH better the times I feel off the wagon though). How likely is it that I became toxic from diet alone? The only sups I took then were off and on drugstore multivitamins. IDK what foods I was eating were supplemented but I was never one for vitamin drinks, super processed/fortified “health” foods, or anything like that. 

So, is it possible I’m sensitive to B6 and naturally predisposed to storing a lot? If so, how would I know and how would I manage this moving forward? Should I get B6 blood tests more often? Anything else I should do or look out for? Thanks! And thanks for this group. I’ve been reading so many posts and learning so much, I would not have figured this all out had I not found you ❤

Ellie C.

For the past 4 months I have been suffering with an almost unbearable range of painful debilitating symptoms affecting my sensory, motor and autonomic nervous system. This includes burning (nerve pain) in my mouth and chest, small fibre neuropathy in my hands, feet and nose, low blood pressure, breathlessness, nausea, muscle fatigue and muscle wasting, insomina, anxiety and lack of thermoregulation especially at night.

I have been admitted to ED twice and had many tests – my symptoms baffling the many medical professionals who tried to diagnose me, including my own neurologist. Then, three weeks ago, thanks to my clever GP I discovered, with a simple blood test that my body was being poisoned by a toxic level of Vitamin B6.

Due to the unregulated vitamin industry I had unknowing getting huge amounts of Vitamin B6 (pyridoxine) from the Blackmores Bio Magnesium and Zinc supplements I sometimes took. I have since discovered that many other people – often extremely fit athletic types – , are suffering the same fate due to unwittingly taking supplements with up to 50mg of Vitamin B6 added. (RDA – is about 1.2mg).

Despite pyridoxine toxcity being well documented in medical journals etc, the medicos I’ve encountered really don’t understand it and don’t seem to screen for it which is also very frustrating. In fact, many are still sceptical that this is what i have.

I am angry that the vitamin industry can get away with this and am sharing my story so more people are aware of the dangers of taking a product that is totally unregulated and in the end is costing the public health system a lot of money and causing so much pain. I believe the recovery is slow and is likely to take six months or so. Please share this post as I’m certain other people may have similar unexplained symptoms. 

Erica K.

I had zero issues prior to the vaccine. I absolutely became toxic directly after. I was wondering if a lot of the people with long term covid brain fog are b6 toxic and don’t know it.

I’m so lucky to have stumbled upon an amazon review mentioning b6 issues from a 1mg multivitamin pretty early on into me feeling so awful which is what lead me to basically harass my dr to check my b6 levels which ended up being the only thing abnormal in my extensive bloodwork. It’s so sad thinking how many people are out there that have no idea why they feel so awful.

I feel like I had an extreme inflammation response to the vaccine which lead to my b6 issues. Yea it is very sad to think how many people are walking around not knowing about their b6 toxicity with zero help post vaccine. I was dismissed and told it was anxiety at every dr prior to my discovery.

It started with extreme chest tightness 5 days after first shot it felt like a belt was being tightened around my chest it was so intense I could barely catch my breath. The dr tried to prescribe me antacids for it !!!!! With zero proof it was a heartburn issue. Everyone told me it was anxiety or a pulled muscle, etc… and pressured me into getting the second shot (funny enough I started actually feeling better and more normal the day I was supposed to receive my second shot).

After my second dose I had horrrrrrible brain fog. I couldn’t work, I couldn’t do anything. I felt like I was losing time. I couldn’t focus on trees or anything outside without extremely zoning out. I was sensitive to light and it felt like a strobe light all the time. I was in a daze. I was also lightheaded and the severe chest tightness was still there. It was just awful. I’m pretty sure I was dealing with some very low blood volume as well.

No doctor I saw had any interest in helping me since all my bloodwork came back normal even with my previous history of never going to the dr besides for routine bloodwork every few years. It wasn’t until 3 months later and I started getting these insanely horrible pressure headaches in certain spots of my head that a dr referred me to a neurologist. The neurologist recommended a multi vitamin and magnesium over the phone with zero testing. The magnesium made me feel worse and within one week of the multi, my feet were tingling and burning sooo bad.

I knew it was b6 related and begged my dr to test my b6 levels which were elevated and the only abnormal thing on my bloodwork. I have had zero help from any dr. Even the neuro tested the nerves in my feet and legs and said for sure something was going on but that was the last I saw him. He never scheduled another appt with me he had an assistant call me and she was zero help at all.

This group and the protocol has been the only help I’ve received and I’m doing sooooooo much better. I’m 8 months out since my vaccine and I can finally actually see the light at the end of the tunnel. Month 6 was where things started really getting better.

Lauren Z.

All of my (what I now know to be b6) symptoms started for me 3 days after getting the first vaccine. I had pins and needles and some pain in my feet. This eventually progressed to include heart palpitations and sensitivity to hot foot baths, magnesium, etc…

My doctors told me not to get the second dose of the vaccine for concern that it was Guillain-Barre Syndrome, so I never got it. A neurologist that I saw also wanted to prescribe anxiety meds and I declined.

My only blood result that came back out of range was ferritin so I figured that was somehow related. After taking iron for months and even getting an infusion, my symptoms suddenly started to change and re-emerge, so I asked my doctor to test my b6 after reading about someone else’s experience in a different group. Turns out my b6 was high.

I had taken different b complex vitamins with 50-100mg for months leading up to the vaccine and for a few weeks after my iron infusion, so this started to make a lot of sense. The vaccine may have been my dehydrating event that brought on my b6 symptoms.

It’s been a long 9 months and I finally feel like I might be on the right track following this protocol.

Barbara H.

I found this website when searching B6 toxicity and i am so grateful.

My issues started last July with dizziness then numbness on right side of my face and my right eye started having double vision. I went to the eye doctor three times in 6 months and my current prescription isn’t right again. I have been to the emergency room 4 times. I stopped going anywhere and was afraid to be alone as I feared I was dying.

I have had MRI’s done and I do not have MS. I had my allergies tested and I am allergy to nothing. I had auto immune testing done and all negative. I have tried new doctors when I get the “It must be anxiety”. I went to my second neurologist and she did neuropathy testing and I didn’t have it. She did test my B6 and it was 88 when 33 or higher was HIGH. I have dealt with feeling my heart pounding which is the most uncomfortable and my nerves throughout my body feeling charged. My face is still numb. I have been prescribed Gabapentin which I only take when needed.

Since reading your website I have downloaded Cronometer and I am keeping my B6 under the RDA. I have been drinking 6 bottles of water a day and aloe juice before bed. I tried the pedialyte but zinc makes me nauseous and I did the coconut water and I had a spell not sure if that but stopped it anyway. I have started working out at the gym to work out the muscles. I am starting to feel better but I am reading it takes time.

I cleaned the kitchen this morning. A deep cleaning for a few hours and had a spell afterwards so I rested as best I could. I find that a fan blowing on my face helps. I am hoping to learn more and give my all to get through this. I was taking multivitamins along with other supplements and I quit drinking last June so not sure if that is related.

The doctors have been a lost cause except for the new neurologist and gastro doctor. I got covid in January and my stomach has been a mess. Scheduled for a endoscopy on the 39th. I have had to work a full time job through this which has been tormenting at times but I showed my husband the website and he read the blogs which were so helpful for him to understand what I am feeling and dealing with. He has watched what he read on your site play out in me. I can’t thank you enough for that. Along with working I have 80 yr old parents to care for. Just finally knowing what is going on and for my husband to now understand bc he felt helpless has been a huge help. Thank you.

Edward C.

I worked my entire career in healthcare and know several doctors. I would say the majority have no idea. Several doctors told me my neuropathy was from my bad back. Finally went to a neurologist who said it’s not from my back. She tested me for B6 and I was over 4 times the upper limit.

Sherry C.

I changed a whole set of doctors because I was treated poorly and treated like I was making this stuff up. I ended up asking the new doctor to test for B6 and she told me to take my supplements every other day. I was referred to a neurologist who was aware of B6 toxicity and told me to stop completely but doesn’t realize the extent of how bad this stuff is. Protocol with hydration, exercise and lots of patience is needed to get rid of this poison. Some people heal quicker depending on their story and how much B6 got stuffed in their muscles/tissues and nerve cells. Just remind yourself this is reversible and hang in there.

Emily N.D.

5/7/22: I’ve been told I either have B6T or ALS. They told me this so I stopped all supplements about 5 days prior to B6 blood work. Then showed “ok” in blood work but on the high end. My neurologist said even at that it’s the highest she’s ever seen but still not ruling out ALS. Both options suck but at this point I’m praying for some improvement. Trying to follow the protocol. After 7 months of hell I’ll do whatever it takes. Was anyone else first told it could also be ALS? How have all of you mentally and emotionally stayed functioning?

5/10/22: I’m so grateful and excited that I’m finally crying tears of joy. I am nowhere near healed, and I know I will have set backs, but after starting this protocol this past Friday, I have had marked improvement daily. I actually am taking 1/2 the Tizanadine that I was taking. My scissor gait is much improved, the twitching tremors and spasms are about 1/10th of that they were. The Dr told me either B6T or ALS. This is proving its B6T. So even on the bad days that will come, I can remember where I was! THANK YOU!!!!

**This horror story was important to post.  This member was horrified at the ALS diagnosis.  The neurologist could not offer any suggestions on how to heal B6 toxicity.  She found the website and Facebook group.  She started following the B6T Smart Protocol with results in a few days as per her second post. This member will be following up with Mayo Clinic to confirm she does not have ALS.**

Kim K.

My local neurologist diagnosed me with SFN, by biopsy. She did blood work, didn’t really tell me anything just “bloodwork” no appt made for results just emails… she left me a message saying to stop b6 supplements, and that was all. I asked to go to the Neuroscience Institute and they explained b6 toxicity to me and said that it does cause all of my “delusions”, crazy pains I am feeling in my muscles and all. When I went back to my regular neuro the other day to follow up with a second MRI after a year, she told me b6 toxicity causes SFN but not the pains I am complaining about. I politely told her I am seeing another doctor about that, and he sent you back my prognosis…. I am not here to discuss this with you, I am here for a recheck MRI after the one last year. She switched gears to that and I did not want to hear another word from her about b6 toxicity cause she does not have the knowledge they have at the institute. We look to doctors for answers and half the time they are clueless. I now strongly distrust doctors in general after listening to doctors say I was delusional, depressed, insinuating I was abusing prescription medication or illegal drugs or truly crazy. After a year and a half of insanity of not being able to get any doctor to listen to me, I finally got all the answers and have been recovering since Febraury. My mental health issues were caused by accusations from doctors instead of the help and care they are supposed to give. I feel so much better with a Dr on my side and answers. I stopped praying to die.

Tory M.

I can’t provide answers to any of your visceral or neuro pain, but I can say that I relate to your journey. This has been such an eye opening experience for me, especially since I have a background as a critical care nurse. In the inpatient setting, it seemed much more clear: tests were timely, diagnoses were given, and procedures or medication was prescribed. This outpatient world is a different beast. We experience and report our symptoms to our GP, who may or may not order tests, may or may not refer us to specialists, the latter who may or may not have an appointment available within three months. And so, we wait. Every day feels like it’s forever, as we live in fear: fear of being awake and going to sleep, as new symptoms seem to appear almost daily. They’re scary symptoms too! Neuro pain, numbness, brain fog, visceral pain (mine is right upper quadrant), and many of you have respiratory issues! I can’t imagine. All this we live with ALONE. No help from the medical community, and since our families and loved one can’t “see” our symptoms, it’s hard for them to provide the support we need, especially because many, if not all, of our tests are negative! And to your point, Jenz, when there finally IS a test that is abnormal, B6, it almost doesn’t seem bad enough to warrant all of our symptoms. Not to mention, that we can be “blamed” for it: we were the ones who were supplementing or eating too healthy. It’s wild. This is absolutely wild. I’m so utterly thankful for this group, even though we are from all over. It is a relief to have hope again. 

See also: Healing Stories, Beth’s Story, and Desperation Causes Desperate Decisions.

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