Don’t underestimate B12 deficiency, ever!

Its a message I ingrained into myself years ago, when I read a book on the topic cover-to-cover in an afternoon and heard all the numerous, often subtle, frequently devastating symptoms of B12 deficiency and yet, though I pursued a vegetarian and vegan diet for many years, and continued to present with a multitude of bewildering neurological and other symptoms one after the other, putting them all down to my “chronic illness”, it was still a statement I failed to properly take to heart.

I guess, at some level, I didn’t want to go too far into anything that would force me to question my plant-based diet, because although I took a high dose B12 supplement for most of those years (not in the earlier years, as I don’t think I realised about the risks until I was a couple of years vegetarian…) I still continued to present with a load of perplexing problems that I should have at least suspected to be signs of B12 deficiency.

B12 is found naturally in animal products such as meat, poultry, fish, eggs and dairy, therefore even vegetarians can run the risk of deficiency but, because vegans do not consume animal products at all, they’re especially at risk of low vitamin B12. Looking back at the decade I was plant-based, its interesting that two years after turning vegetarian (which I decided to do at the very time that I was feeling all-but fully recovered from burnout and ME, having pulled out all the stops between 2011-2012 to bounce back from my health crash), I presented with my first weird nerve symptoms, as no doubt documented in my blog around that time. Annoyingly, since I was of a predominantly spiritual mindset during those years, having caught the “its all just evolution” and “everything is perfect as it is” bug off my internet buddies, I all-too easily put these effects down to “ascension symptoms” as was the trend at the time and failed to delve deeper. Two years later I became electro-hypersensitive and began having severe migraines so regularly it was easier to list days when I wasn’t in abject pain. My environmental sensitives multiplied apace. Two years after that, having now become fully vegan only a few months earlier, my intermittent tinnitus (which also began in spates a year or so after turning veggie) became shrill and permanent, as it still is now, then came the downward slide into a myriad of symptoms that have included pins and needles and allodynia, parastheisia, neuropathy, POTs, vision issues, heart palpitations, arrhythmia, increasingly low mood and social, sensory and other deficits.

All in all, I’ve been veggie for just over 10 years and vegan for over 5 of those and, collectively, the last decade has been like treading water and frequently ducking beneath the surface in terms of my health stability, in spite good organic food sources and all of the appropriate supplements.

But then I’ve recently had quite a turnaround….most of these symptoms have begun to back off, reduce in frequency, even disappear and I’ve been feeling more switched on and functioning in lots of ways. So what’s changed? Conspicuously, my diet as I am no longer plant-based.

Something made me throw out the question, this morning, is it possible that some people can’t absorb B12 in supplement form and the answer seems to be, yes, its possible…more so the older you are (especially older women), if you have gastrointestinal issues (I do) and potentially became B12 deficient for quite a time before you cottoned-on to taking a supplement (as I did) and I would add that some of us just don’t seem to respond to supplements the same as other people do, and I am that way with both supplements and medications. I would also add that a sign of low B12 might be if you have an issue with oxalates to the point of needing to follow a low oxalate diet (as I do, and as I’ve written about many times before) as I have just learned that low B12 levels can be a cause of high oxalates in the body (Dr Amy Yasko takes on those who propound the low-oxalate diet and here writes “Low B12 is a common cause of high oxalate. Low B12 induces the Krebs cycle to run in a retrograde direction, which increases oxalate.“) Ironically, it sounds like the vegan diet may have led to a built up of oxalates due to low vitamin B12 (plus the fact so many vegan foods are sooo oxalate heavy) as a result of which I was no longer able to continue with the vegan diet!

I have also just read, in more than one source, that B12 deficiency is known to cause autistic-like behaviours and that B12 therapy is advocated as a therapy for improving social, language, spatial and processing abilities in some autism circles…and I will come back to my own observations on that topic in a minute!

The effects of low B12 can mimic chronic health issues and even diabetes (due to the onset of neuropathies) so they can hide themselves away or be ignored when, really (given the damage caused by depletion can be permanent) we should be paying full attention. Here’s another one to watch for: many medical conditions can falsely normalize serum B12 levels even in the context of a real B12 deficiency. Also, taking folate where B12 is deficient can use up its reserves to the detriment of the cells that need it. To quote one headliner I came across, B12 deficiency can be particularly sneaky and harmful.

So what are the common symptoms? Here are just some of them:

  • fatigue and lack of energy
  • sensory neuropathies incl.
  • pins and needles symptoms in legs, arms etc
  • parasthesia in hands and feet
  • allodynia
  • tinnitus
  • irregular heartbeat or palpitations, arrhythmia, tachycardia etc.
  • myelin sheath disruption
  • baroflex disruption leading to dysautonomia (eg. postoral orthostatic tachycardia (POTs), dizziness)
  • loss of appetite and weight loss
  • depression and irritability
  • mood disorder
  • difficulty concentrating, brain fog
  • anxiety
  • headaches
  • mental declines in memory, judgement, and comprehension
  • disturbed or blurry vision
  • motor skills deficits, clumsiness, impaired coordination
  • changes in skin colour, such as paleness or a yellow hue
  • tongue redness and soreness
  • speech, language and social deficits
  • diarrhea, nausea, constipation, bloating, gas, and other gastrointestinal symptoms
  • muscle cramps, muscles that seem to stay rigid
  • orthostatic tremor
  • hypersomnia (sleepiness)
  • disrupted sleep patterns
  • obsessive compulsive traits

These symptoms (almost all of which I have had in spade loads) are all fairly widely reported, but I would take a bet that most plant-based people aren’t familiar with them or prepared to look out for them with the due diligence that this calls for. Sometimes, the anecdotes of others that have had issues with deficiency speak the lowest, as did this one to me:

“I was lying on my right side in bed when pins and needles radiated through my left arm. I wasn’t putting pressure on my left arm, so why was it asleep? I shook it out and contorted my body, trying to stretch my limb to rid myself of the feeling but felt no relief. Then my left hand went numb. After 30 minutes of panic, I convinced myself it was all in my head and eventually fell asleep. By the time I woke up in the morning, the same tingling sensation had spread to both arms, hands, legs, and feet. I was really freaking out.” (article – Insider)

This other woman’s experience with the dead left arm is, word-for-word, what happened to me a few weeks ago, only my symptoms then spread into my upper left quadrant, close enough to my heart to freak me even further, thus I spent 6 hours at hospital being checked for a heart-attack. It was around then that I really began to take some of the signs and clues more seriously and relate them to issues with my dietary health, although at the time I wasn’t even thinking about B12 and had no idea that what I was about to change would be so positively impactful until it happened and I looked back in appraisal of how much had changed in just a few weeks. Because what I did around then was begin eating meat in addition to the fish, dairy and eggs I had tentatively reintroduced earlier this year, and that’s when things began to stabilise. Several weeks into returning to a meat-inclusive diet, I can’t ignore that certain things have really changed for me:

  • I feel more stable and anchored to the ground, physically
  • My muscles have ceased being rock-hard rigid all the time
  • My vision is mostly clearer and eyes less tired
  • My neuropathies and skin-crawling parathesias have mostly backed off
  • My regular heart palpitations and arrhythmias have stopped
  • I no longer get pins and needles or dead arm/foot etc.
  • I sleep much more deeply, am seldom awake in the dead of night
  • Interstitial cystitis is now much more rare
  • I’m able to go for brisk daily walks, no more weakness, pain or stumbling around
  • My spatial awareness and balance have greatly improved
  • I’m back to enjoying aerobic exercise every morning (it was a struggle to get off the sofa not many weeks ago)
  • My mood is multiple notches higher that its been for a very long time
  • I’m feeling so sociable, am chatting the hind leg off everyone I meet, including perfect strangers
  • I’m wanting to say yes to joining in with things
  • My gastrointestinal problems have massively subsided and I now enjoy a mostly normal digestive system without constant pain, bloat or wind
  • My ability to tolerate some of the things I used to consider “triggers” (from moderate amounts of sugar to environmental factors such as noise) has increased
  • I’m far less OCD or prone to getting stuck in a task or thought; have greater task variability

All of these things have started happening in the not-quite 2 months since I started eating some meat, 4 months since I resumed eating fish on a regular basis. This does seem to indicate that I was missing something crucial and that it is now being replenished, with fascinating and quite compelling effects. I don’t feel I have to justify myself to anyone but what I have returned to is organic, ethical, regenerative, wild or grass-fed and consumed gratefully and in moderation. I’m not suggesting better sources of B12 are a cure-all but some of the physical effects have been compelling; some of the adverse symptoms I used to experience are much much improved whilst others are steadily waning. On some days (not all yet), I’m not nearly as sensory-sensitive as I used to be and can sit here surrounded by traffic chaos and remain serene without my noise cancelling headphones. I can be in crowds and not flinch or feel so much on my guard. I’m just patiently waiting to see if my tinnitus can also reduce or go away in time and that’s the thing…long term deficiency can cause some irreversible damage and those things that can be reversed can still take some time doing so, but I’m prepared to be patient and am already feeling more grounded than I have for years.

Perhaps the biggest effect for me, at the mental level at least, is that I simply don’t feel so “autistic” or even “ADHD” any more. Sure, I’m always going to be neurodiverse but that’s part of my uniqueness, I wouldn’t change that for the world, but the deficits have all started backing off. As I said above, I’m feeling unually gregarious, chatty and confident right now, I relish meeting people out-and-about and am eager to engage, not reticent at all. In fact I actively enjoy brightening peoples days with an impromptu interaction when I get the chance (which is how I used to be, way back), initiating conversation on my walks or at the dentist office. I flaunt my quirks, not hide them away, and make people laugh with my slapdash humour. I don’t feel socially clumsy or like I have to prepare myself in advance to open my mouth and say something. I’ve become more of a “yes” person to opportunities, much more spontaneous, and I’ve stopped fretting so much about what I eat and drink or how environmental things might affect me. My mood feels stable and reliable, like I can trust myself to be able to handle things and not suddenly fall into disarray. My executive functions are not only back but they feel sharper than ever, in fact (in a particularly busy phase of our lives) I’m handling some really complex and demanding things with aplomb like I used to do.

So, all of these things have come to pass in just the last handful of weeks and mark some major changes in me, compared to the last few years of struggle. In fact, even just a month ago (as I wrote about), I was in a phase of struggle experiencing deep fatigue and other issues that looked like a flare-up of ME but I now wonder if that was just my body adjusting to some major shifts in the building blocks it was being fed, from the previous fully planet-based to the highly avoidant low-oxalate diet to the, now, meat inclusive diet (which is not to say I am fully carnivore as lower-oxalate plants still make up a significant part of what I eat, but that I like to think of it as more balanced now). I suspect oxalate dumping from the diet change will also have been a factor in that crash and that may continue to occur in waves for some considerable time, so the show may not be over yet. However, there have been some other positive changes in behaviour and healing mindset, and I will talk about those soon in another post as its going to be a big topic, but I also suspect that without the physical improvements I have been enjoying, including the increased stability that seems to be taking shape, those would have been much harder to instigate as I would have been far less open to the kind of optimism that a positive shift in attitude requires.

None of this is to say I reject a plant-based diet per se but that it apparently didn’t work for me and I won’t be returning to it, as far as I can tell. With the beauty of hindsight, I can see how my declining health paralleled my increasing reliance on plants for some crucial nutrients, B12 being just one of them but perhaps…because of the widespread effects its depletion can have…the most important of all and maybe, in my case, supplements were never going to be enough. I’m not the only one finding this out the hard way; one quick search and you will likely trip upon dozens of people with stories like mine. One group of doctors, scientists and other health professionals based all around the world are so concerned at the lack of understanding about the importance of B12 that they have formed an information body called cluB-12 to try and stimulate more research, conversation and information sharing on the topic.

I only wish I could instill this information, with enough gravity to be taken seriously, into my daughter who is vegan and often forgets to supplement B12 or doesn’t quite hear me out when I try to convey just how important it is (especially when she already has some signs and symptoms of B12 deficiency). YorkTest ran some statistics from their data and discovered that, contrary to the popular opinion that such deficiencies tend to happen mostly in the post-50 cohort, Gen Z actually have higher levels of vitamin D, folate, and B12 deficiency (42% of tested 20-29 year olds have vitamin D deficiency and 55% of females and 40% of males aged 20-29 have low B12). These are shocking statistics given these effects can become even more impactful during the child-rearing years, when under a lot of career stress, and then get worse with age. I can only imagine a lot of it has to do with recent trends towards a more plant-based diet, especially in those age groups, which is fine…just as long as the importance of B12 and the knowledge that some people need more than others, or struggle to absorb it in supplemental form (and not all supplements are made equal…), is also taken on board and the signs of deficiency not brazenly ignored.

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest 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 symptoms that concern you.

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