I know that quite a few of you rely on this blog to keep you up to date with what’s going on at the Pernicious Anaemia society. And I also know that I have been guilty of not spending enough time on this site and so for the next hour I will try to update you with everything that has been happening – and there’s quite a lot to report!
I want to first of all set the background to the society. When I was forced into early retirement from teaching I simply wanted to provide newly diagnosed patients with Pernicious Anaemia with an easy to understand explanation of their condition. I wanted to do this so that others wouldn’t be in the same position that I found myself in when I was diagnosed because when I went to find out about the disease there simply wasn’t any information available. My GP did his best to describe what had happened to me and I got the gist of what he was saying but there was no simple written source that I could turn to for a full explanation of my newly diagnosed condition. And so that’s what I set out to do – set up a little patient support group that would provide a downloadable written explanation of what Pernicious Anaemia is. With the help of a web designer who was just starting out and who had responded to a request from me to help establish an online society an Online Forum was set up and within an hour or so of it going live we had our first sign-up. And the remarkable thing was that her story was almost identical to mine even though she lived in the USA. Like me she had developed nerve damage and like me she had lost her career.
Over the next few days the stories posted on the online forum showed remarkable similarity with most if not all writers commenting on how long it had taken for them to receive a diagnosis. And then there were the complaints about the frequency of injections with some writers having the good fortune (as I did)of having a sympathetic doctor who would sanction the injections of B12 according to the need of the patient and thereby ignoring the guidelines issued to medical professionals on the treatment of Pernicious Anaemia.
On first looking back at the past seven years since I started the Pernicious Anaemia Society it seems that we are still in the same position as we were in not getting diagnosed quickly and treated adequately. Some people are still waiting many years for an explanation of their symptoms and the most common complaint by those who have received a diagnosis is the inadequacy of their treatment. Yet I believe truly that we are just about to change things. It may have taken seven years to get to where we are, but when you remember that when I started out to set up a society for people my sole intention was to provide newly diagnosed patients with a plain English explanation of their condition. I had no idea at first that there were so many issues that needed to be resolved with the disease. If I had known from the outset what I know now things would have changed sooner. As it is I have had to learn as I have gone along – but now we have the evidence that we need to be able to change things. There are a few fundamental facts that need to be understood.
Firstly, the vast majority of medical professionals are completely unaware that there are fundamental problems with the way in which Vitamin B12 Deficiency is diagnosed. And why should they. Until the PA Society came along there simply was no ‘vectoring point’ where patients could relate their experiences. I was genuinely shocked to discover from the very beginning of the society, that there were these issues surrounding patients getting a quick and accurate diagnosis. Whilst I started the PA Society with the aim of providing an easy explanation of the disease to newly diagnosed patients I realised early on that I had inadvertently started a particular patient support group that was in a unique position to articulate the views and experiences of specific group of patients to the medical fraternity. You cannot blame doctors for ignoring the problems with the way in which Pernicious Anaemia is diagnosed and treated – they simply weren’t aware of the issues until the PA Society could make them aware of these problems. Now, whilst ignorance among medical professionals about the problems associated with the diagnosis and treatment of PA can be excused on the grounds that there was previously no channel whereby doctors could be made aware of these issues there cannot be any justification for medical professionals ignoring the facts now that that channel is firmly established.
Secondly you have to realise that the symptoms of Pernicious Anaemia have two inherent problems; they are insidious and they are vague. The symptoms of the disease develop only very slowly, often over a number of years. And because of this the patient will also make small adjustments to their everyday lives which address some or all of the many symptoms associated with the condition. And to make matters worse the symptoms can and are often attributable to advancing years and are thought to be a fact of life. Any small adjustments made to everyday life means that the patient’s symptoms become manageable at first before developing to the extent that the patient eventually makes an appointment to see their doctor. Unfortunately this is often not the end of the story in the patient getting a diagnosis that will explain his or her symptoms. Because the symptoms of B12 deficiency are so vague and so wide-ranging they are often associated with other possible medical conditions. And hereby lies a problem that the PA Society can do something about. In my book Pernicious Anaemia – the forgotten disease I explain that whereas Pernicious Anaemia was a disease that concentrated the minds of some of the twentieth century’s greatest doctors and scientists it largely became forgotten once a safe and reliable treatment became available. When I was interviewed for a radio programme aimed at doctors the interviewer, who is a practicing GP, suggested that part of the problem is that doctors are “not looking for it”. In other words when the patient relates to his or her doctor what can be a long list of vague symptoms the physician doesn’t automatically associate the symptoms with low B12. He emailed me two days after the interview to tell me that he had diagnosed two patients the day before with B12 deficiency and that he suspected that the deficiency was due to the patient having classic auto-immune Pernicious Anaemia – “funny what you find when you look for it” he added at the end of his email. So, raising awareness among Primary Care doctors is something that the PA Society can do. And that is what we are currently working towards. However, I am aware of a piece of advice given to me by a Medical Negligence Solicitor who was a Haematologist for thirteen years before changing careers; “doctors talk to doctors and listen to doctors – and it’s been that way for four hundred years.” And this means that we have to work with medical professionals who will take our message to other medical practitioners.
Now, imagine a world where doctors in primary care start actively looking for B12 deficiency when a patient visits them and reels off a long list of vague symptoms that the doctor is now aware that they could indicate a deficiency in B12 because he or she has been made aware of these symptoms by the campaign by the PA Society. The doctor will then order a Full Blood Count and ask for the patient’s B12 be measured. Unfortunately we now know that many doctors will ask for a full blood count without the B12 being evaluated and will rely on enlarged red blood cells (macrocytosis) to indicate that the patient will have low B12 – but we also know that patients can have low B12 and have no anaemia or macrocytosis.  So, why isn’t B12 evaluation part of the full blood count? Well, that’s another thing that we as a society will be campaigning for.
Let’s go back to the ideal world, the doctor has listened to the patient’s long list of symptoms and is now aware that they could be caused by B12 deficiency which will probably be due to the patient having anti intrinsic factor antibodies and so will order the patient’s B12 and Intrinsic Factor Antibodies to be evaluated. Unfortunately the test to determine the patient’s B12 and Intrinsic Factor Antibodies misses between 23 and 35% of people who are deficient in B12 giving false high levels of B12 in the patient’s blood. So what can be done about that? Well, earlier this year we, the society, produced a Briefing for the British Committee for Standards in Haematology and we also discussed this issue in a face to face meeting with the UK’s National Director of Pathology. We can do no more than make medical professionals aware of this but what is more important is that we use our unique position to relate that whilst doctors may be aware of the current failings in B12 testing and Intrinsic Factor antibody test it is we, as a society, who is having to deal with the consequences of these failings. And that is why the research paper that has been written by medical professionals that detail the findings of our survey is so important. That research paper will be published in the next few weeks (he says with his fingers firmly crossed).
And back we go to the ideal world. Imagine if the patient is now diagnosed as having Pernicious Anaemia because his or her B12 is low and he or she has tested positive for Intrinsic Factor Antibodies. We are still not in the clear. What if the test shows that the patient doesn’t have antibodies that kill off any intrinsic factor that he or she produces – the verdict would be that the patient doesn’t have Pernicious Anaemia and that his or her low B12 is caused by something else such as inadequate dietary intake of any animal products. But, what if the patient not only doesn’t produce any Intrinsic Factor Antibodies but simply doesn’t produce any Intrinsic Factor. The current tests do not test for Intrinsic Factor but only the antibodies that will destroy any Intrinsic Factor that is produced – if the patient doesn’t produce any Intrinsic Factor in the first place then this won’t be picked up on.
Back in the ideal world the patient will have tested positive for Intrinsic Factor Antibodies which would explain why he or she is low in B12 and the physician will then order Loading Doses of B12 every other day for two weeks. Then the patient will be expected to receive an injection every twelve weeks for life even though a great many patients will need more than this[i]. And this inadequacy of treatment for some, though not all patients remains the single most common cause of complaint by members of the PA Society. We now know that patients who have doctors who are aware of issues with the current recommended treatments prescribe injections according to the patient’s individual needs and these doctors are to be commended because there is ample evidence that different patients need different treatment. And why is this? Well, you will have to be patient – there is a research paper being published in September that will go some way or maybe even all the way in explaining this. The society is also working with a leading Clinical Researcher who is also investigating this and will be involving members of the Pernicious Anaemia Society in this investigation. The science behind the reason why some patients need more frequent replacement therapy injections more than others may just be about to be revealed.
What is known is that when doctors refuse to prescribe more frequent injections than those stated in guidelines patients are turning to internet ‘pharmacies’ to buy different types of B12 injections without the knowledge or consent of their doctor. Or they travel to mainland Europe where several countries simply sell the injections over the counter at pharmacies and then inject themselves without receiving any training and without using pre-injection wipes or lockable sharps bins. Others receive Intravenous Infusions of B12 preferably from qualified doctors though there is some evidence that this isn’t always the case. Still others use other B12 delivery methods to supplement their intake between injections (nasal sprays, skin patches, sub-lingual lozenges and tablets) – again often without the knowledge or consent of their doctors.
Then there is the problem with doctors trying to ascertain the B12 status of their patients by ordering more blood tests after injections have begun – the result will invariably be that the patient’s B12 will be high and, believe it or not, the doctor will then withdraw treatment and wait until the patient’s B12 status falls below the lower threshold used to determine deficiency. And this practice runs the risk of the patient developing serious and irreversible nerve damage to both the peripheral and central nervous system.
So – what started out as a simple exercise to provide an easy to understand explanation of their new medical condition to those who have just been diagnosed with Pernicious Anaemia has turned into a campaigning group that seeks to make medical professionals aware of the impact that poor diagnostic techniques and technology is having on patients and on their families and friends. And it is the impact on patients’ lives that my new book is all about. Living with Pernicious Anaemia is due to be published in October of this year by Hammersmith Books. I can only hope that it will further educate patients and doctors as to how Pernicious Anaemia affects those who have to live with the condition and their families and friends. After all, you have to remember that there is still no cure for Pernicious Anaemia – only an often inadequate treatment.
[i] This is in the UK – different countries have different treatment regimens – some countries use tablets instead of injections though most patients report responding to injections better than responding to tablets.
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