Many people have never heard of pernicious anaemia and when they do, they tend to dismiss it as ‘just anaemia, so they have to take iron pills.’ But the truth is somewhat different.
It’s reportedly an uncommon illness – the incidence in the UK population is estimated to lie between 1–5/100,000 per annum, though this might be an underestimate, since misdiagnosis is not unusual. Until the 1930s it was a fatal illness; and still is if the sufferer does not get regular injections of vitamin B12. Without those they would be likely to suffer a plethora of totally unpleasant symptoms which might include apparent dementia, hallucinations, numbness and/or pain and even paralysis in their limbs, something that looks like madness and eventually death.
It is entirely likely, in fact, that some individuals have been diagnosed with dementia or multiple Sclerosis, since ‘PA’ (as it’s often called by sufferers), can mimic both those illnesses closely.
A gut enzyme called ‘intrinsic factor’ is essential for the absorption of vitamin B12 from food or supplements; but it’s the lack of the enzyme, or the insufficiency of it, that causes this illness, and so vitamin B12 supplements in tablet form don’t work for most people. So, the only answer is regular injections, usually into muscle, and since this is an incurable illness they will be for life. B12 is water-based, and no toxic level has ever been defined, but it is a sad fact that most doctors are unaware of how much some people need just to remain minimally functional – B12 deficiency affects every organ in the body, including the brain, blood, digestion, bowel, bladder, vision, and the entire nervous system.
Some people can get by with one injection every three months; others need quite a lot more than that, but, again, doctors often don’t realise this and so the only answer is for them to buy the B12 from abroad (injectable B12 is prescription only in the UK, though not in many other countries) and learn to inject themselves. But that’s not the only problem. There are three different types of injectable B12, only two of which have been confirmed for use with PA, and it’s not unusual for one or the other of those two types to be ineffective for some people. It’s altogether a difficult and frequently upsetting situation.
The easiest way to show just how devastating – and that is not an exaggeration – the illness can be is to relate my own journey from when I first became ill up to now, where I have my life mostly under control. I was one of the lucky ones who was diagnosed after only a few months and quickly learned how to look after myself. Some, though, go for several years of distress before a final diagnosis and might end up with permanent nerve damage and other health issues as a result.
It started in 2013. I’ve always been an energetic individual – a ballroom dance instructor with my own school for decades, the oldest computer games writer in the UK in 1984, an amateur musician, professional teacher of hypnotherapy and psychotherapy, writer, and explorer of anything I didn’t already understand. Early in 2013, I began to experience extreme tiredness, which was not my style at all and though the general opinion was that at 71 I was beginning to experience the effects of ageing, something just didn’t feel right.
And it wasn’t.
Not only did I feel physically unwell, I became depressed, tearful for no reason whatsoever, and felt nauseous enough that I could hardly eat. I hadn’t been to see my GP at that point – I would feel better for a while, and so I dismissed it all as just ‘a bit of overwork’ (I was working a 70-hour week developing and training psychotherapy courses online at that time.) It was when my wife and I were away for a weekend that I started getting an odd visual problem – it was like looking through a mosaic pattern filter.
Come the Monday, though, when I had decided to phone the GP, everything seemed to have improved quite a bit and so, like most of us do, I decided to ‘see how it goes for a few days.’ Then I started to have balance problems – and as a professional dancer for thirty years that was not good. I also suddenly developed insomnia, pins and needles in my hands (that felt like real needles), vertigo, tinnitus that sounded like screaming banshees, wobbly balance and even more wobbly vision. Definitely time for a medical investigation.
As it happened, a health check that had been booked for some months was due, and so I was able to discuss my concerns at more length than I might have done at a doctors visit. When the report came back, a few days later, it showed to my surprise that everything was within normal limits except for the fact that my vitamin B12 was rather low and that this might mean I was at risk for developing Pernicious Anaemia. It was the first time I’d heard of the illness, researched it, and decided I wasn’t going to have it. I bought some vitamin B12 tablets, and at first the effect was almost like magic – back to my normal self within a day. Literally. Even the tinnitus had abated; but that was at the beginning and ‘PA’ is progressive, so it wasn’t long before I could have swallowed a hundred pills, and they would have made no difference whatsoever.
And this was where things took a turn for the worse. The sensation of being ill worsened rapidly – I had developed a total conviction that I was dying, strong enough that I said goodbye to my wife and my dogs – and by the time I visited my GP, a couple of weeks after the pills stopped working, I felt wretched. The GP decided I was suffering stress and should take anti-depressants. I told him about the health check showing that my vitamin B12 was low, and that I feared I might have pernicious anaemia; I eventually pestered him enough that he gave me a few vitamin B12 injections, which had the startling effect of making me feel almost totally well 0 for about a month.
From there it was more pills; back to the GP for another blood test which showed my B12 level was normal (because I’d taken the pills, and they raised the blood count even though they didn’t work); dismissed by the GP and told to stop reading the internet; a consultation with a private doctor who decided I was ‘odd’; and another consultation with a private haematologist who confirmed that I did indeed now have full-blown pernicious anaemia and would need injections for the rest of my life. This confounded the doctor who had decided I was ‘odd’, and the tone of his letter to my NHS GP was somewhat grudging: ‘It turns out this fellow does, after all, have PA and will need vitamin B12 injections for life.’
I didn’t go back to my NHS GP but to a private doctor who was little short of brilliant. I had five injections in as many days and instructions on how and where to inject myself. Then I joined a Pernicious Anaemia support forum on the Internet and garnered a mass of important information and help, including where to buy supplies and, again, how to self-inject. I also discovered my experience was not at all out of the ordinary – many there had experienced far worse and been far more ill. People sometimes raise an eyebrow at the notion of injecting self; but vitamin B12 is totally safe, totally legal, and it’s far easier than trying to get extra injections from an over-stretched GP.
So I practised sticking a hypodermic needle into an orange for a few days, bought a batch of vitamin B12 ampoules, needles and syringes and started on self-injections straight away. Most of the time I feel okay. Seldom totally well, but equally seldom do I feel really ill – though that does happen when I experience a ‘crash’ that comes out of the blue and needs extra B12 for a few days to recover (all PA sufferers get that). So I’m one of the lucky ones who can function almost normally, have little residual nerve damage anywhere, and am self-sufficient enough that I can easily look after myself.
PA can be devastating. Not only does it make the sufferer feel wretched, their families and colleagues often have little or no recognition of the havoc it wreaks in the sufferers body and mind. After all, it’s ‘only’ a vitamin deficiency.
Terence Watts is the creator of Brain Working Recursive Therapy (BWRT).