Pernicious Anaemia (Autoimmune
Metaplastic Atrophic Gastritis) is the most common cause of Vitamin B12
Deficiency 1 but it is not the only
reason for patients becoming deficient in this vitally important vitamin.
Introduction
Vitamin B12 Deficiency is a worldwide problem.
‘In the United Kingdom and United States the prevalence of vitamin B12
deficiency is around 6% in people aged less than 60 years, and closer to 20% in
those aged more than 60 years’2.
One author has calculated that nearly 6 million people in the UK are
deficient, whilst the figure for the USA is over 26.5 million. In India over
586,000,000 people are deficient in the vitamin.3
However, these figures need to be treated with caution, not because they
may be exaggerated but quite the opposite; they are probably an under
exaggeration.
This is because of four major problems.
Firstly, nearly 40% of members of the Pernicious Anaemia Society had their
deficiency wrongly diagnosed – the symptoms were attributed to some other
illness.
And so that means
that there are probably many millions of people who are feeling ill but who
have yet to be told that they are B12 deficient.4
Secondly, there is
no consensus amongst scientists as to what levels constitute a deficiency and
this is further complicated by the fact that different areas of the UK will
have different thresholds used to determine a deficiency.
That means that in
one particular part of the UK you will be told your B12 levels are ‘normal’,
yet if you lived in another part of the country you might be identified as
being deficient.
Some scientists
believe even the highest thresholds that are used to define a deficiency are far
too low. 5
Thirdly, there is
the tricky issue of ‘sub-clinical deficiency’ where the patient’s serum B12
might be above the threshold used to define a deficiency yet he or she will
have all of the symptoms of a deficiency in the vitamin.
Finally, there is now widespread acknowledgement that the machines used to
determine the amount of B12 in patients are seriously flawed and give false
high readings in many cases.6
All of the above make the task of diagnosing patients as being deficient
in vitamin B12 almost impossible.
Causes of B12 Deficiency
There are several
other ways in which people can become deficient in Vitamin B12.
1. Diet
Vitamin B12 is found only in foods that are animal based with the
exception of seaweed (Laver Bread in Wales and Nori in Japan).
Consequently,
people who do not eat animal products (or seaweed) run the risk of becoming
deficient in B12.
Those who exclude meat from their diet but do eat fish and
dairy will be much less at risk of developing a deficiency because dairy
products make B12 ‘more bioavailable’.
2. Gastric Atrophy (Atrophic
Gastritis)
Atrophy is the medical word used to describe ‘wasting away’.
Gastric
Atrophy is the result of chronic inflammation of the stomach lining which means
it cannot produce hydrochloric acid (needed to break down food), pepsin (that
helps speed up the break-up of food) or Intrinsic Factor which is necessary to
help ‘extract’ B12 from food.
Atrophic Gastritis can be caused by advancing
age.
By Helicobacter Pylori or by Autoimmune Gastritis where the patient
produces antibodies that destroy either the Parietal Cells or Intrinsic Factor
or both.
Patients who produce antibodies that destroy their Intrinsic Factor
will be diagnosed as having Pernicious Anaemia.
3. Parasites
Including:
- Fish Tapeworm
(Diphyllobothrium) that steals up to 80% of the patient’s B12
- Beaver Fever – a parasite that lives in
stagnant water
4. Medicines
The following leads to the patient’s B12 being compromised in some way
and to some degree or other:
- Contraceptive Pill
- Ibuprofen (pain killer)
- Colchicine (used to treat
gout)
- Cimetidine (used to treat
peptic ulcers)
- Omeprazole and Lansoprazole
(proton pump inhibitors)
- Phenobarbital, Pregabalin,
Primidone and Topiramate (epilepsy)
- Metformin (Type 2 Diabetes)
Most of the above, perhaps with the exception of Proton Pump Inhibitors,
have only a minimal or slight impact on B12 levels and taking a B12 supplement
will correct any deficiency.
WARNING: YOU SHOULD NEVER STOP TAKING YOUR
MEDICINE BEFORE TALKING TO YOUR DOCTOR.
5. Gastric bypass surgery
6. Ileostomy
7. Nitrous Oxide (Laughing Gas) (N2O)
Now the UK’s second most recreational drug after marijuana. Used in
Dental Surgery and in Gas & Air.
Further Reading:
- What You Need to Know About
Pernicious Anaemia and B12 Deficiency; Martyn Hooper; Hammersmith Health
Books, 2016
- Could it be B-12? An
Epidemic of Misdiagnosis; Sally Pacholok, Jeffrey J Stuart; Quill Driver
Books; 2011
- Books about Pernicious Anaemia
References
- Andres E, Serraj K. Optimal
management of pernicious anemia. Journal of Blood Medicine 2012; 3:97-103
- Hunt A, Harrington D,
Robinson S.; Vitamin B12 Deficiency; British Medical Journal 2014;
349:5226
- Hooper M. What You Need to
Know About Pernicious Anaemia and Vitamin B12 Deficiency; Hammersmith
Health Books, London; 2014.pp 32-34
Pernicious Anaemia: Little known but Potentially Devastating
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 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.
or
