I’m aware I’ve been very quiet in here, for a very long time, and that’s largely because I’ve been concentrating on my recovery process…that process being mostly led by the CFS Health model I’ve talked about before. I joined their mentorship a few months ago and am finding it really helpful for guiding my recovery mindset and daily practices as well as providing community and accountability to help me on my way.

I’ve also been getting well into following Jeannie di Bon’s various pilates programs designed for managing hypermobility (which I VERY highly recommend for the difference they can make – I started with the Strengthen your Hypermobile Core course just before Christmas, which was a game changer for less pain and better stability in just a few short days, and now use the Zebra App daily, which is a powerful resource of even more movement classes, a chat forum and lots of information to help with living with hypermobility). All of this has helped enormously with my POTS (postural orthostatic tachycardia) symptoms, meaning I am now far less orthostatically intolerant than I was for most of last year and improving all the time.

These two approaches, together, have been a powerful combination and continuing, so I recommend exploring them yourselves if you are suffering from similar challenges to the ones that I have written about so copiously this space in the past; really, they are both game-changers. I’ve also instigated several really helpful routines, such as sitting outdoors every day (especially on days when I don’t manage a walk) to boost vitamin D and improve circadian cycle thus sleep…yes, in spite of the cold weather…and now wouldn’t give the practice up for all the world as I really enjoy it but its one more reason why I haven’t had the time to write in the mornings like I used to do. One more thing (not that I’m making excuses) I also got flu late last year, which set me back for quite a few weeks (even more than Covid did earlier in the year, though the after effects have been less harsh) so yes, I’ve been a very quiet blogger.

So I just want to pop up today to say I’m still here and wish everyone Happy and Hopeful New Year but also to flag up a topic that feels far too important to slip quietly onto one of my resources lists (to which I still add useful information all the time) without first flagging it up in a post, that topic being B6 toxicity. If you happen to be someone who takes B6 supplements in any of their various forms, you might want to check out that this isn’t happening to you because it can be a surreptitious cause of many health problems (as I have found out).

The idea that taking supplements of B6 can, in some people, result in B6 getting stored in the body at a highly toxic level, causing a whole range of neurological symptoms (see below), had come up on my radar before but, for whatever reason, I didn’t pursue it at the time. Perhaps I just didn’t want to hear it on top of everything else, plus it was hard to believe that such an innocuous seeming thing could be the cause of just so many problems given B6 is so freely added to all sorts of “household” supplements, products and drinks (which, in hindsight, is one of the problems with it, when those things commonly overlap). When it came up on my radar again, towards the end of last year, a year in which my own weird and wonderful neuropathic symptoms (including much worsened peripheral neuropathy, many more episodes of numbness, frequent cramping, trigeminal neuralgia and paresthesia not to mention severe POTS as a resounding feature of the year) had been a real concern to me since covid and then the flu seemed to stoke them right up, I began to sit up and take notice of B6, just in case this really was really “a thing” to be wary of.

Because B6 has actually been associated with a whole range of unpleasant symptoms including small fibre polyneuropathy which, in turn, can be an underlying cause of POTS and other dysautonomias. Other side effects can be dizziness, photosensitivity, sensory anomalies such as “glove and stocking” sensations on limbs, allodynia etc, involuntary movements, cramps, cold hands and feet, loss of bladder control and bladder pain, brain fog, breathing issues,  nausea and acid reflux, amongst others (the actual list of associated symptoms is very long, I recommend the book mentioned in the next paragraph for the full account). In fact, as a known neurotoxin, B6 can get stored long term in muscle tissue, indiscriminately damaging nerve fibres along the way and so cause a perfect storm of autonomic and other issues.

My first port of call was one of the various Facebook communities of people sharing their experiences “detoxifying” from B6 supplementation, which led me to the website and downloadable book Understanding B6 Toxicity (which, by the way, offers a lot of hope that, by tackling this one thing, being such a potential “central” cause of many symptoms, you can then put a load of extremely heinous symptoms behind you) which I of course read, following which things began to fall into place because of just so many similarities with my own symptoms and experiences. It also gave me a lot of optimism, and a plan, on the basis that this was something I could now put behind me if I took measures to do something about it (though, for the record, I have chosen to eliminate just the supplement forms of B6, not foods that naturally contain it, which is a less intense way of detoxing than recommended in the book and allows me to keep my balanced diet intact).

At the time, I was arranging for various blood tests to try and rule out other possible causes of my worsening polyneuropathy (such as diabetes, thyroid function, dietary deficiencies, inflammation or Lyme) and decided, at the last minute, to throw in a B6 test. My results, whilst coming in pretty positively on all other counts except for a possible early glitch with thyroid, indicated that my levels of B6 were very high indeed, only just below the edge of acceptable. This after a 2 year period during which I hadn’t been dosing all that highly at all…just 5mg a day in a B complex which is next to nothing compared to what I was taking prior (but still far too high compared to the RDA).

Because these are the widely quoted recommended doses:

• Adults 19–50 years: 1.3 milligrams
• Adults 51+ years (men): 1.7 milligrams
• Adults 51+ years (women): 1.5 milligrams
• Pregnant teens and women: 1.9 milligrams
• Breastfeeding women: 2 milligrams

Prior to that, I have been through long phases when I was dosing as high as 100mg or even 150mg of B6 a day, which is very easily done when most stand alone B6 supplements from well-known supplement brands weigh in at 100mg per daily dose. Add into the mix any other supplements, such as multivitamins or B complexes, sometimes magnesium supplements etc., that also contain B6 for good measure and then there are all the commercial foods such as bread and cereal, energy and health recovery drinks, complete food products etc. that throw even more, often high, doses of B6 into the mix (thankfully, I’ve seldom been a consumer of those kinds of products) and you can see how it’s so easy to take in a toxic dose, with very few warnings anywhere that this could have adverse effects.

An astonishing fact that a brand new article in The Guardian, published just last week, has also flagged up. This article, with the headliner “Simon never linked the pain in his hands and feet to multivitamins – but a pathology test did” published on 4th Jan 2025 (which describes Simon Bogemann’s fears after noticing he had developed “claw hand”, or rigid hand cramping, after driving his car…a symptom I have had countless times holding a paintbrush or book for even slightly too long, along with worsening pins and needles in hands and feet, as I have also had) describes an increasing number of patients presenting with these symptoms and then testing positive for high levels of B6. The article quotes Prof Michael Kiernen who says ““None of this is policed…So, if you go down to the chemist and go down the vitamin aisle, they’re all there. You can get a whole shopping trolley full of them.”

At one time, no one even mentioned the possibility of B6 toxicity in my circles or would roll their eyes, as if I was being paranoid, if I so much as mentioned it (to the point I even doubted it myself) but I’ve lately heard it bandied around a lot more so for it to have made a national newspaper is a sign that, hopefully, things are changing and people are becoming wise to the fact. Even the NHS has some brief advice on this topic and, when I asked my supplement provider to refund my latest pack of B complex vitamins 3 months after I ordered them, telling them why, they said yes without hesitation, adding that they were considering creating a new B complex compound with a lower B6 dose in it for “sensitive people”…However, I have now found another B complex product that excludes B6 altogether, interestingly designed for people with bladder pain, which I have long had and which had been getting much worse lately. On that neuropathic bladder pain topic, its very noticeable to me that, since starting the B complex with no B6 in it, a couple of months ago, I am now sleeping through the night for the first time in years because I am no longer needing to get up for the loo repeatedly with irritated bladder (with very positive effects on my chronic fatigue).

When I look back at times when I was taking a higher dose of B6 (thanks to Amazon, I can track every packet of various B vitamins I’ve purchased for the past 12 years!) I’ve been able to work out exactly what dose of B6 I’ve been taking at different times.

It all began right at the start of my chronic health recovery phase, back in 2011 (about when I started this blog), when I was taking the so-often recommended, for people with fibro and ME/CFS, “Dr Tieterlbaum’s From Fatigued to Fantastic” vitamin powder drink which, as far as I can tell, as its hard to come across now, included 45mg of B6 per daily measure whilst the associated FTF Adrenal Stress End product contains yet another 50mg. These products were my mainstay for at least a year or so after I first started taking advice about fibromyalgia and fatigue recovery!

After that, my supplements ebbed and flowed through different eras but the first year or so (2016-17) that I was on an extremely high dose of B6 (that 150mg I told you about, made up of two products containing B6 that I was taking simultaneously, back in the day when people advised that you couldn’t take too much of it) corresponds with when neuropathy came on just so abruptly and severely that I became suddenly electrosensitive and could no longer use my iPad as touching the keypad would make my fingers tingle and burn (this was also the era when I had to wire my home for ethernet and cease using wifi). During those same years of very high dose, I had a load of other horrible neuropathic symptoms appear, including tinnitus, which begin quite distinctly “out of nowhere” one day and never left (so easy to blame on menopause…) and marked the start of a new era of health challenges that has never really abated since, although the pattern of neuropathic symptom severity has certainly ebbed and flowed with B6 dosage.

And, oh the irony, the more you develop weird neuropathic symptoms, the more they advise you to take B6 as low levels of B6 are often a first suspected thing as a possible cause of peripheral neuropathy, numbness and heightened sensitivity to pain. In fact, tap it into Google right now and AI well try to tell you that “B vitamins B1, B6 and B12 are known to be beneficial for treating neuropathy and sensitivity” and that “B6 (pyridoxine): Helps maintain the covering on nerve endings and relieves nerve pain”, but what about when the very reverse starts to happen, as is the case for just so many people, it turns out?!

My dosage lapsed down to just 5mg, taken in a B-complex supplement, for about a year or so from 2019-20 (during which I was MUCH more physically active and in far less pain) then went up again, to 100mg, from April 2021 – Oct 2022, this timespan corresponding with the onset of trigeminal neuralgia, which I had very severely for a few months and which still comes and goes “randomly” to this day, as well as much worsened POTS (this was when I first sought medical advice for orthostatic intolerance and weird heart rhythms). My allergies increased and I became so sun-sensitive I would develop a lumpy rash all over my face when I was outdoors for even a short while that summer. This latest era of much heavier B6 dosage also corresponds with when I began to suspect that oxalates stored in my body were causing all my weird sensory, allergic, muscular and dysautonomic issues (I shared all about this at the time and, as a theory, it seemed well-founded in data) but I now wonder now whether it was really long term B6 toxicity, damaging nerve fibres all over my body and getting more severe with each bout of heavy dosage, that was the primary cause? After all, too much B6 is known to be capable of launching attacks on the sensory nerves, the autonomic nerves and the motor nerves, which can result in a whole hotchpotch of symptoms.

It was around the time I started to cut back on oxalates in my diet that I took my last singular dose of B6 (end of 2022) after having tried to take it in the form of P5P as is recommended for detoxing from oxalates (this is an active form of B6, more readily available to the body). I had such unpleasant side effects from taking that particular form of it (I can’t recall all the details but am pretty sure numbness and strong heart flutters were amongst them) that I very quickly stopped and ceased all singular B6 supplements from that point, meaning I was “only” dosing at 5mg per day in my daily B complex supplement from that point onwards (two years ago). The B complex felt important to continue in support of the theanine protocol I have been following since that time (see my other posts on that) since theanine needs other B vitamins as important adjuncts.

That 5mg per day was still more than enough to build up, or add to, an already toxic level given…remember I said before…the recommended daily dose for a woman my age is only 1.5mg, a level that is more than likely met through dietary sources alone (and bearing in mind my body was also likely carrying a highly toxic load from all my previous high supplementation). In other words, I have still been taking way too much…right up until a couple of months ago when the penny finally dropped!

I just want to add here that there was another era when I dosed B6 intensively without realising there might be consequences and that was in my late 20s (back in the mid 1990s) when my ex husband got it into his head, from something he had read, that it was the antidote for female “moodiness”. As a result, he more or less insisted I take daily B6 supplements – which were likely at least 50mg as most of them are – so I did, not that he noticed any positive effects (my “moodiness” was largely to do with him…). I now look back and wonder about the fact that era was when I first began experiencing such severe episodes of neuropathy and numbness in my arms and feet that not only was I pretty alarmed at the time but my mother, who shortly afterwards passed away with cancer, spent her last few months much more worried about my health than she should have been in the circumstances!

So, plenty of evidence seems to be there to suggest I have had a long-running issue with B6 supplements but here’s the most compelling so far; the emerging outcomes of ceasing to take it.

By the time I had my blood test result, which you will recall came in showing pretty high levels, I had already ceased taking any B6 supplements for about a month and had “only” been on 5mg per day for the last 2 years (compared to very much higher dosage a while back). I also have to presume that I may still have had much higher levels “stored” than show up as mobilised in blood (from research, its known that B6 blood levels do not correspond to symptoms (Jortner, Bernard, 2000; Berger, A.R., et al, 1992; Stewart, Sarah, et al, 2021) so its really a matter of elimination whilst tracking any improvement of symptoms.

Its interesting to me that, over that 2 year period I have been on a much lower dose (5mg rather than 100mg or more, as before), I have become so much less EMF sensitive that I now use wifi and bluetooth around my house every day (whereas I couldn’t cope with having wireless tech anywhere near me during those earlier years). Since stopping B6 altogether, there have already been significant improvements in neuropathy (pins and needle sensations in hands and feet are now rare), POTS has massively reduced, I’m sleeping so much better (in part, due to improved bladder pain), what was becoming frequent neuropathic stabbing pains in my eyes has now backed right off, though my vision still goes through phases of feeling blurry for a day at a time (this could be a detox side-effect), I’ve had no trigeminal pain to speak of and episodes of numbness to my legs have thankfully ceased as they were happening quite a lot just a couple of months ago, which was alarming in the extreme.

Perhaps its all because I am another couple of months further down the path of recovery from long-covid and have also put flu behind me (its been a month now since I recovered from that)…or perhaps its all to do with this. Even if covid and flu have played a big role in my challenging neuropathic and dysautonomic symptoms this year, as I know they have (and links between covid, neuropathy and POTS are now extremely well reported) I can’t help wondering whether toxic levels of B6 in my system didn’t make me more susceptible to that in the first place.

Because, for a time there, starting in about March or April and continuing until very recently, I could hardly stand or be on my feet at all, so severe was my POTS and, please bear in mind that damage to small fibre nerves (neuropathy) can be a major trigger of POTS, in fact my version of POTS has always most closely matched the neurological subtype (see this list of classifications on POTS UK). So if B6 can cause neuropathy and neuropathy can cause POTS, you can see what I am thinking here!

In the time since I ceased all B6 supplements, I have gone from being first housebound and then still very orthostatically challenged for months, thus only able to do very minimal walks outside the house, to being upright “like a normal person” and back to walking a decent amount over the Christmas period, all in spite of having so many more demands on my energy during that time. Though I am still having to pace and not overdo things to avoid crashing, the change in me has been remarkable and also quite rapid. I can now stand up to cook, shower etc, in spite of the flu knocking me off my feet for 3 weeks in the middle of that improvement phase and though, yes, I still have a lot of pain going on (after all, I do still have hEDS and my joints are having to get used to moving again after an extremely sedentary year) at least I am far less fatigued and, most importantly, I am sitting and standing UPRIGHT for much of the day without horrible consequences. Yes, 6 months of pacing and 4 months absorbing the positive mentality of the CFS Health mentorship, plus core strengthening from pilates and better sleep, are certainly playing their big part in my forward progress but it also feels like something else has shifted…and perhaps that one thing is B6. I long-ago ceased looking for a cure-all for chronic illness but this certainly feels like a potential big player.

Of course it’s still early days and can take between 6 months to 2 or 3 years for B6 toxicity to leave the system, with (from what I read) waves of fairly unpleasant symptoms along the way so you have to be prepared to buckle-up for the journey. Its also important to keep hydrated as much as possible and also to avoid anything that causes too much vasodilation since B6 toxicity is already causing nerves to (so, very similar advice to managing POTS) to try and ease your way through it. Exercise is also necessary so just as well I can now manage to do some. For me, potential side-effects of this process, so far, seem to include regular crawling sensations in my chest and torso (paresthesia) which get much worse at night or when lying down, as though something is shifting around in my body tissues, but I’m hoping such sensations will start to dissipate as B6 comes out from wherever my body has been hiding it in an attempt to keep me safe in the face of highly toxic levels it couldn’t handle. The book I have linked to talks about such unpleasant sensations being because paralysed nerves are wake up again!

The beauty of hindsight is always a wonderful thing…I can’t change what I have done in the past, nor blame myself (especially when I was being actively encouraged to take this supplement in support of my health, by those more knowledgeable than me, for such a lot of those years) but I can learn from it and move forwards with renewed optimism that this is yet another very positive step towards better health and hopefully no permanent harm done. Sharing my experience here, as ever, in case it helps to inform anyone else suffering from this!

B6 Toxicity – Hemminger & Willis

Pyridoxine Toxicity Small Fiber Neuropathy With Dysautonomia: A Case Report – Bacharach, Lowden & Ahmed

Understanding B6 Toxicity – information including a protocol for detoxification

Article in the Guardian on this topic, 4th Jan 2025 – Simon never linked the pain in his hands and feet to multivitamins – but a pathology test did “A growing number of consumers are presenting with symptoms linked to high levels of vitamin B6, pathologists say, while the supplement industry goes unpoliced”.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest, entertainment and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.