18 Things I Bet You Never Knew About B12 And How Truly F*cked Up Things Can Be If You Have Pernicious Anemia

That morning I had woken up and walked into the doorframe of my bedroom for *not* the first time. The day continued with me feeling tired, off-balance and dizzy, as usual. I had been at work about an hour, seated sedately in front of the computer when I announced that I didn’t think I could stay upright any longer.

As I stumbled to a nearby couch, with the room swirling as if I’d just gotten off a dizzying roller-coaster, my boss called a local holistic medical centre just around down the street. They had some room for me so my boss bundled me into her car and drove me to see the doctor who, ultimately, saved my life.

I knew something wasn’t quite right in my final year or so in Japan. It was the end of 2008 and I was depressed, food and alcohol had lost its appeal, I was unnaturally tired all.the.freaking.time, and walking on uneven surfaces in dimly lit streets had become an exercise in serious concentration.

In crowded Tokyo, I didn’t think much of constantly shoulder-bumping walls, corners, signs, passing pedestrians. My ears rang loudly with irritating tinnitus - but after more than a decade working in the music industry, that wasn’t such a surprise. I got cankers for the first time in my life. The soles of my feet would feel like they were burning at night. Drove me nuts. Figured it was all the walking in thick woollen socks.

I struggled with finding the right words. Apparently that has a name of its own: nominal aphasia. The brain fog was real and I couldn’t remember things. I was moody and cranky, and found myself behaving shamefully nasty at times — completely unnecessarily so. I mean, is it EVER ok to be nasty? No. But I would just explode. Over small things. I had also developed social anxiety, hated being out in crowds or at parties. In fact, a touch of paranoia had quietly, insidiously lodged itself inside my brain. I wondered if all the mushrooms and LSD I took at uni had caused some long-term damage?

Instinctively I knew I had to go somewhere slow and gentle, it was a craving, and I began to extricate myself from Tokyo after a 7 year stay - a herculean task involving customs agents, international shipping companies and rolling online-sales of all my stuff through forums, classified ads and facebook. My brother and his growing family lived in a beautiful, tropical part of the world, and I moved into their home in the foothills of the Atherton Tablelands, in Far North Queensland and started quietly focusing on my physical and mental health while house and job hunting.

It was not long after that, just about 8 weeks actually, that I found myself in front of my new doctor at the New Horizons Health Clinic in Port Douglas. She asked me a whole host of interesting questions about my physical and mental health, diet, lifestyle. She was careful, thorough and considered all possible causes for my strange collection of symptoms. When she got the initial results for my blood tests, she immediately ordered a second batch of tests on the same sample and called me when she got the results. The wait was excruciating. That hunch that had her send back for further testing pretty much saved my life. And my sanity.

Parietal Cell Antibodies

She told me I had tested positive for parietal cell antibodies, which confirmed her suspicions that I had developed an auto-immune disease called Pernicious Anaemia. My B12 sat at a dismal 128pmol/L with active B12 at 30pmol/L and 25 ug/L of ferritin. She told me I would have to come in immediately and get started on a course of loading dose b12 injections, one every second day for a week, then wait a month to get another blood test before starting on a course of B12 injections every 3 months for the rest of my life.

That was in 2009. There was almost no information anywhere about this weird disease that had kicked my ass. The first time I googled it (pretty much 3 seconds after I hung up the phone from Dr Liz), I read on wikipedia that Pernicious Anaemia was a rare, chronic and potentially deadly disease (after all, pernicious means fatal) that required a lifetime maintenance of B12 injections. There was some mention that it might be genetic. There wasn’t much else to go on apart from a bunch of symptoms which I recognised with some intimacy. I cried for a week. And read everything I could get my hands on. Which wasn’t much back then.

Over time I relaxed into it and gradually, naively, began to believe that I would be totally fine — my 3 monthly injections seemed to have sorted out the worst of my problems and I felt — mostly — strong, fit and healthy, although I had prematurely developed a full head of white hair, a common sign of B12 issues. I certainly ALWAYS knew when it was time for an injection (things would start to go a little pear-shaped). I assumed that that would be all there was to it. How I wish things could have been that easy. That was before I had ever heard of auto-immune gastritis. Or co-factors.

Fast forward a decade, to today. I’ve learned a thing or two about this nasty little disease(s). And no, 3 monthly injections are NOT the nice tidy solution we all hope for, nor the only thing you have to worry about, on the roller-coaster ride road to good health. I’d like to share some of what I’ve learned with you, because chances are, you’re reading this because you’re sick with pernicious anemia (yes I keep alternating the spelling because we all spell it differently and I want search engines to find this piece) and you are scared as hell because no-one in your medical world seems to know anything, least of all your GP.

So let’s begin, shall we? Here are 18 things I have learned that may help you too.

1. First and foremost, I’ve learned that the medical establishment knows sweet fuck-all about nutritional science and chemistry, and in particular the important role of B12 or the devastating effects of B12 deficiency. Admittedly GP’s have an excuse — they are ‘general practitioners’ — they do not have specialised knowledge, they are not trained in specialised areas of medicine, so I think we expect too much of them sometimes. I was very, very lucky to have been diagnosed in my first appointment with a doctor — but I must clarify that she was a holistic/integrative medical doctor. Most people go for years before a confirmed diagnosis because many of the symptoms mimic more common disorders. Most doctors hear the words tired, depressed,anxious, moody, foggy, dizzy, pins and needles and they wack people onto anti-depressants or anxiety meds and imply that it’s all in your head. By the time the diagnosis is made, a shocking number of people are in wheelchairs or bedridden, confused or even a little psychotic [See some case-studies here]. Misdiagnosis is a shamefully common problem. Doctors are simply not trained to recognise basic nutritional disorders. They are also suspicious of self-diagnosing patients. Fortunately, there is a wonderful website to help you with this global knowledge deficit, and they have a whole section devoted to how to deal with disbelieving doctors, arming you with facts and clinical research and the very latest global medical guidelines. I’ll talk more about the website and its excellent companion facebook support group later though. It is truly life-saving.
2. I have learned that there are two different causes/types of pernicious anaemia. One is a little simpler that the other. It’s caused by the presence of Intrinsic Factor antibodies. I say that it’s a little simpler, because having the other version automatically groups you into a nasty little cluster of other auto-immune diseases. Intrinsic factor antibodies means that you have a B12 absorption problem only. Here’s one guy’s diagnosis story. Now is a good time to point out that some people actually carry BOTH sets of antibodies at the same time.
3. Lucky me. Cue the weeping violins. I have the other, nastier version of PA. I have parietal cell antibodies in my gut. My PA is the end stage of another, more insidious, chronic genetic disease which often doesn’t have any outward symptoms for decades: Autoimmune Atrophic Gastritis (not to be confused with regular atrophic gastritis which is often caused by H. pylori). This little gem is also strongly connected to diabetes type 1, Hashimoto’s and Addison’s disease just to name a few. We need parietal cells to build both the intrinsic factor we use to extract B12, and also the hydrochloric acid (HCl) we use to extract iron and enzymes from our food. Which means that not only do I have two confirmed diseases, but I also have to have two different supplements injected regularly if I want to stay alive: B12 injections and 5-monthly iron infusions as well as taking a number of essential co-factors and digestive supplements (more on that later).
4. For a long time, autoimmune atrophic gastritis does not cause any obvious signs and symptoms. Over time, the inflammation associated with atrophic gastritis damages the stomach lining, causing digestive problems (ie hypochlorhydria) and nutrient deficiencies and eventually, symptoms start to show. Mysterious nausea, vomiting, bloating or fullness, reflux, sharp tummy pains. My symptoms have started to show. I now take a couple of zinc L carnosine capsules first thing every morning, and 2 to 5 Betaine HCL capsules with meals to help ease the hypochlorhydria and digestive processes. They seem to be helping. I avoid any foods that might cause flareups like nightshade vegetables, alcohol, dairy and gluten, eat loads of fermented foods, and have researched and implemented aspects of a wide array of auto-immune diets including the nutrition-rich Wahls Protocol, and the Autoimmune Protocol (AIP) Diet. All these things help fight inflammation in both the stomach and joints/muscles.
5. Hydrochloric acid, also called HCl, is one of the many chemicals that should be released in our stomach when we eat a meal. Its role, along with the other gastric juices, is to break down foods and cause the release of enzymes that further aid digestion. HCl also protects the body from illness by killing pathogens commonly found on foods. It’s pretty important. Also, did you know reflux happens on low stomach acid too? Weird. So if you’re getting heartburn and reflux, don’t just straight onto the typical proton pump inhibitors or antacids until you know for sure what is causing your reflux, and whether you have high or low levels of stomach acid. I get reflux despite having almost no acid in my stomach, it’s a problem with AIG. A cool trick to test how acidic your stomach is you have is to have about a half a teaspoon of bicarb soda in a quarter-glass of water first thing in the morning — and do this at least 3 or 4 days in a row for consistency. If you don’t burp in three or four minutes you have low HCl. I almost never ever burp when I do this test. My lucky housemates however burp like fast rolling steam-trains. Very impressive. So yeah, now I include a healthy shot of hydrochloric acid with my meals. The high-school science student in me still can’t believe that I do this daily without burning holes through my stomach walls.
6. Autoimmune atrophic gastritis is considered a “precancerous” condition and it may be responsible for the development of gastric adenocarcinoma or carcinoids and requires regular endoscopic examinations. Lucky us. Ewwww, love having tubes pushed down into my stomach. You’ll need to find yourself an excellent gastroenterologist. They usually know a lot more about whole PA/AAG condition than your doctor does, and it’ll help your arguments with your doctor when they support you injecting B12 as required rather than on a regular neat tidy timeline.
7. Alcohol is no longer my friend. It fucks my gut and depletes my B12 and leaves me absolutely wrecked on so many levels (physically, digestively, mentally). And I’m slowly, reluctantly weaning myself off a lifetime coffee habit. Obviously my fragile stomach lining won’t be able to handle it for much longer. And hey, stress also effects the state of play too. Oh, and yeah, did I mention that strenuous exercise also depletes B12? Alcohol, coffee and strong exercise — the holy trinity of a happy healthy social life have all been marred by this insidious pair of diseases. This all adds to the accompanying mental health fracas that I’ll go into further down. And a caveat: once you get used to all these changes, and start getting proper treatment, things WILL get better. You will find your way.
8. Did you know that are quite a number of different types of B12? I didn’t. And each type has to be managed a little differently. The main ones you’ll be dealing with are methylcobalamin, adenosylcobalamin, cyanocobalamin and hydroxocobalamin. Here in Australia, hydroxo is the most common form of injectable B12 but it doesn’t suit everyone for a number of reasons. It all gets quite complicated and you’ll need to research. This page will help explain it better than I can. Hydroxo works well for me so I’ll be sticking with it for now.
9. Relapse and remission. I thought I was doing OK on 3 monthly B12 injections for about 8 years and while my iron was always low I was able to manage it, and the mild depression that had dug in. And then, sometime last year I tripped and fell down a deep dark hole of unwellness. My iron absolutely bottomed out and things were definitely very very not right... In the search to find out what the hell was going on I stumbled upon mentions of relapse and remission in the world of PA. Whoa! Now that’s a fine can of pickles ¯\_(ツ)_/¯ . Ugh, so it appeared I had ‘relapsed’. And the worst of it? No-one really knows exactly why PA relapses happen. We do know that some imbalance somewhere triggers it, but what exactly? We need so much more research.
10. I learned that accurate treatment of PA actually has to address symptomatic flareups with significantly increased injections (just ignore those sadly misguided textbook guidelines citing a one-size-fits-all 3 monthly injections protocol), and careful management of a wide range of essential co-factors. I had no idea about the role of co-factors at all. No doctors ever warned me to keep an eye on them. I doubt any doctors even know about them themselves. And in my case, MY co-factors were all out of whack. All sorts of bad things were suddenly happening. My nominal aphasia (difficulty recalling names or words) was back to pre-diagnosis levels, I was constantly breathless, getting weird tight-twisting chest pains that have nothing to do with my healthy heart, chronic fatigue, brain fog, spatial awareness issues, confusion, anxiety, depression, irritability, paranoia, burning feet, foot cramps, insanely itchy legs, sore/aching eyes. You will need to start to learn all the wide variety of symptoms B12 deficiency causes to look for signs of an impending crash. I had crashed. And that’s a thing that happens when the co-factors fall into disarray, and you’re not getting enough B12 and when you consume/do things that additionally deplete B12 (like stress, alcohol, strenuous exercise and nitrous oxide).
11. Before we dive into co-factor management, let’s discuss B12 injections, and how often you should be receiving injections. And how this prevailing idea that every three months is ample for all sufferers of PA is a dangerous one. We must inject B12 based on how we’re tracking symptomatically and how the cellular uptake is functioning. And if twice-daily shots keep symptoms at bay then that’s how often your should be injecting (for now, anyway). Trust me, there are thousands of PA affected people injecting daily, safely, and seeing significant improvements in their symptoms and reversal of neurological damage. And before we go anywhere let me state very clearly that there is NO UPPER LEVEL TOXICITY POINT for B12. It is not toxic at any level. It is water soluble. This means you pee it out when there’s an excess. Because there is a small risk of anaphylactic shock (some people do have cobalt allergies, which is the chemical base for B12!), it is advisable to get your first injection from a medical professional. Your doctors or nurses may go into a panic if you discuss the idea of injecting more often than once every 3 months. Like mine did (sadly I live far away from Dr Liz these days). She stood beside her stoney-faced nurse (who had just realised I’d been coming in every 6 weeks for shots) and told me I wasn’t allowed to have 6 weekly shots — it could ‘damage my liver and get into my bones’! Oh you can’t be serious! I stared open-mouthed at her dangerous misinformation. Once I had recovered, I asked her to prove that it’s toxic, show me actual clinical proof. She was not able to, because THERE ISN’T ANY! But plenty of evidence to the contrary. I gave up on my doctor (while trying to educate her to help the PA patients that come behind me) and the clinic nurses, and took my treatment into my own hands. I now self-inject B12 on an as-needed-basis. It could be every daily, or second day (and it usually is). But if things seem to be going ok, it might be once a week. It needs to be the moment any of the symptoms start re-appearing. And there is a strong argument that it should be BEFORE symptoms return. Getting enough B12 treatment, and getting the co-factor mix right should see you healing in time, but the journey may take years and not all damage caused is repairable. There is very strong testimony across the PA community that you need have b12 levels of 1000 and upwards consistently for healing to begin.
12. I have a needle phobia, so I use an auto-injector and buy all my injection supplies at local chemists (B12 injections are available over the counter here in Australia) or online through reputable dealers on ebay. Before I started the journey I researched the procedure and equipment (ie needle gauges, draw up syringes etc) comprehensively on youtube and across medical journals online. I made sure I understood all the safety protocols including how and where to self-inject intra-muscular needles, ensuring everything was clean and sterile, how to use swabs and get rid of air-bubbles (though they are not an issue at all for IM injections), etc. The first few shots were done with a friend helping push the plunger down once the auto-injector had done the initial push. I was a wreck. But the fourth time, I sat out on my verandah in the morning sun after a 10 minute meditation, headphones on and Explosions in The Sky — Your Hand in Mine playing (- a great track, it builds three times over 8 minutes, so I let the songs waves help me psych myself up) and got the job done. Sobbed afterwards. Feelings of relief, success, pride, grief: this is my life now. But you know what? The longer you have adequate treatment of B12, the less anxiety you feel around injection process. Because B12 helps ease anxiety. It’s a win-win! Plus, my Dad was a diabetic and he had to shoot 4 times a day, I have it lucky only having to shoot every second day. I keep telling myself that if he could overcome his needle phobia to be able to do that, a shot every second day should be a walk in the park! Suck it up, princess.
13. Some tips I’ve learned about self-injecting: a) warm the ampoule by tucking it inside your clothing as you’re getting everything ready - cold B12 stings like a bitch (b) a cough as you do the initial plunge will help disguise the sting (c) push the plunger very slowly — your impulse will be to push hard and fast to just get it over and done with but that is actually the most painful way to do it (d) firmly rubbing the spot afterwards with a tissue helps diffuse the B12 (and soak up the blood droplets)(e) You don’t HAVE to do intramuscular, you can do subcutaneous injections into your tummy instead if IM totally freaks you out. But IM is the most beneficial way to deliver the B12 into your system.
14. So. Let’s talk co-factors. This is where it gets complicated. You will need to get a bunch of tests taken to assess where you’re at. You absolutely must have folate tests, as without folate your body can’t process B12 at all and you will never heal. You also need to know what your iron, ferritin, vitamin D, potassium, magnesium, and the other B vitamins are, as these must all be at optimal levels. Let’s be clear: optimal levels do not mean “in range” as your doctor will try to imply. Optimal means in the upper third of the range provided. To support the process of B12 absorption, your body will use large amounts of all of the above. Which means it’s likely that you will need to supplement. I need iron infusions about every 5 months, it just passes through me like sand through an hourglass [***Late 2020 Update: my iron has stabilised and I haven’t needed an infusion for over a year now]. My folate has always sat reasonably in the upper-ranges (I eat a lot of folate-rich foods), so I no longer take any extra folic acid other than the methylfolate in my B-multi, but many people are deficient and require daily supplementation. Some people prefer folinic acid or methlyfolate so try them all out and see which one your body responds best to but they do require different levels of dosages so be sure to research thoroughly. You should try to eat loads of potassium rich foods — it’s pretty easy to do that so it’s unlikely you’ll need to supplement. Just google potassium foods. I take a lot of magnesium glycinate — it’s really good for mental health as well as B12 support. Vitamin D is very important, with its proven immunomodulatory effects. If you have an auto-immune disease you should be aiming to get your levels up to 200nmol/L (or 80ng/ml depending on the unit measurements your lab uses). If you do need Vit D you should make sure you supplement with Vit K2 as well but do make sure your calcium level is not elevated before supplementing with Vit D as that can be dangerous (Vit D increases calcium uptake).
15. SIBO (small intestinal bacterial overgrowth) needs to be ruled out if you’re having difficulty resolving your symptoms — it could be the cause of your B12 +/ folate deficiency or, conversely, could be caused by your autoimmune gastritis. The bacteria can actually synthesise folate although you can’t use it. However, when that happens, your serum folate would be sky high. Follow your doctor’s advice to get rid of the bacteria. You may then find you do not need as much B12 or folate. The relationship can also be in reverse — many medical papers suggest that low stomach acid can be a cause of SIBO (usually in cases of stomach surgery)… and we know that PA/atrophic gastritis is associated with low stomach acid, so PA could be the cause rather than the byproduct of SIBO. SIBO is basically a chronic infection in your gut. And it can cause low B12 levels. SIBO also causes other vitamin deficiency, such as A, E, K, and D. So many people with PA mention that they also have a vitamin D deficiency - this may be why! SIBO can cause kidney stones, gallstones, high blood pressure, bloating, gas, breathlessness, and always feeling ‘ill’. There are SIBO support groups on fb, and tons of medical articles on the net for info and references. I have found that taking HCl Betaine with meals was a strong factor in helping clear up my SIBO by returning the stomach acid to optimal levels.
16. Once you’ve got a diagnosis, you’re in for quite a journey of trial and error, learning and furious frustration and terror. I have found it a very lonely and secret illness. While B12 deficiency is very common, PA is pretty rare, and I’ve never met anyone else with it. And no-one has ever heard of it. It’s chronic and serious but your friends and family won’t understand that because you’re not really showing any outward, obvious signs of illness. People can’t see it, and sure don’t want to hear about it even though you live it everyday. The worst of it (in my experience) are the scary neurological and neuropsychiatric symptoms commonly experienced. These can include: feelings of dread, impaired vibration — position sense, abnormal reflexes, unsteady or abnormal gait / falls, ataxia (disorder affecting balance, coordination and speech), balance problems, nominal aphasia — difficulty recalling names or words, forgetfulness, memory loss, dementia / intellectual deterioration, confusion/disorientation, psychosis, post natal depression, hallucinations, memory loss, delusion, depression, suicidal ideation, mania, anxiety, paranoia, irritability, apathy, personality changes, violent/aggressive behaviour, schizophrenic symptoms, sleep disturbances, insomnia and changes in taste, smell, vision, and sensory/motor function which can be mistaken for psychiatric problems. I’ve experienced quite a few of the above, certainly pre-diagnosis and more-so recently with this current flareup. Which is why I’m determined to get the right mix of B12 injections, iron infusions and co-factor supplementation just right. ‘Cause I’ll be damned if I let this disease take my mental health and quality of life. There are some great handy apps out there to help you track your medications and symptoms and generally manage everything and help you recognise patterns that might not be so clear: I am currently testing CARA and Flaredown and will ultimately make a decision to use one or the other. There is also a tracking app put out by B12Deficiency.info site. It may well suit you so please do check it out.
17. You need to get good, informed support. And it’s unlikely that you’ll find it in your doctors surgery. There are some great places you can go to find out more and get one-on-one support and advice. You MUST start with the excellent website www.b12deficiency.info — scour every page. The site was built by a UK couple — Tracey (who has a B12 deficiency) & Damian Witty, with content from a collection of experts including the wonderful Pat Kornic and Sally M. Pacholok and others. Tracey runs and updates the site day to day, and has read and shared thousands of journals and articles on B12 over the years. But the website can’t answer every question, and I believe most members of the global Pernicious Anaemia/B12 Deficiency — Support Group on facebook would agree with me when I say that the group has probably saved the lives and sanity of the 18k+ members a few times over. Managed by a team of B12 & P.A. experts — most of whom have the disease themselves or work as nurses or nutritional health specialists, they have developed an excellent protocol for treatment and can help you decipher blood test results and how to manage other aspects of the disease in terms of treatment advice. Also, this great information site, https://www.b12-vitamin.com is an excellent source of info. There are more localised groups too — on facebook and also established organisations like the Pernicious Anemia Society in the UK of which I have been a member despite living in Australia. They have a number of localised support groups throughout the UK. Here in Australia I am also a member of the Pernicious Anemia Australia Support Group on facebook. If your autoimmune gastritis has become a problem, the AutoImmune Atrophic Gastritis & Pernicious Anemia group will help. And there are plenty more. These groups are full of kind, generous people who know exactly what you’re going through because they’ve been there themselves.
18. If you have PA you WILL start seeing signs of B12 deficiency all around you, and it’ll be a natural response, based on your own experience, to tell these people to get tested for PA (and oh yes your loved ones will start rolling their eyes at your every mention of B12). There is now proof that PA is genetic — familial clustering is common, and that it coexists with multiple autoimmune diseases. However, showing signs of a B12 deficiency doesn’t mean that these people necessarily have PA — because actually, there are other, serious, causes of B12 deficiency and they still need significant levels of ongoing treatment. The problem is that many GP’s think that if they can’t confirm PA then these patients don’t require treatment or that they only need tablets. WRONG. *sigh. It’s all so wrong. How is it possible that basic nutritional health is not a major component of medical training? The world is all upside down.

Molecular structure for Stomach Gastrin + Iron + Cobalamin (B12)