Reflections on Treating Pernicious Anaemia

by | Jun 3, 2020 | 12 comments

Lessons from The Covid-19 Pandemic

The arrival of the Covid-19 virus in March 2020 brought with it new challenges for patients with Pernicious Anaemia and their families and friends. The most serious problem centred around patients accessing their treatment – treatment that they need to stay alive.
There was and is an underlying problem with patients receiving treatment according to their individual needs, the usually strictly implemented ‘one size fits all’ can cause serious problems to the everyday lives of patients who are being under-treated, and the ‘feast then fast’ treatment needs to be addressed.
And so, after taking so many telephone calls from distressed patients, I have been reflecting on the problems with treating Pernicious Anaemia, and so I highlight the various issues that are causing so much hardship. The following relates solely to the United Kingdom.

History

Here’s a rather sad note that I bought off eBay:

Dec. 7, 1908
My Dear Cousin,
I have to thank you for your kind letter of sympathy with me in the loss of my dear wife. She has been ailing for over a year, suffering from what the Doctors call ‘Pernicious Anaemia’, and it seems to be a disease which is almost impossible to cure. She managed to get to Silloth in the middle of summer and got a little better at first, but soon fell away again and grew gradually weaker. Jon has not seen her since Uncle Tom’s funeral at Silloth, I think I will be through Oulton occasionally, and when the days get a little longer I will take an opportunity to call on you some time.
I am
Yours sincerely
Rich­­­­ard Birkett

I have that note, beautifully written on card that has a black border to it. Richard’s wife ‘fell away’ because she had been diagnosed with Pernicious Anaemia and there was, at that time, no cure for the disease. And how had she been diagnosed? Well, there was no serum B12 test at the time (it would be another forty years before B12 would be identified) and there was no Schilling test or Intrinsic Factor Antibody Test – so the diagnosis of Pernicious Anaemia that poor Mrs. Birkett died from was made simply on symptoms and perhaps a blood film examination.
I have another account from around the same time as Richard lost his wife, that is written by a Canadian physician which is a sort of diary of how he treated a male patient with Pernicious Anaemia. I say ‘treated’ though all that was at the doctor’s disposal was iron tablets that did nothing to prevent the poor man from eventually dying. It’s a sad tale of trial and error by the doctor to do something for his patient but nothing that was tried worked.
It would be almost twenty years later that American doctors discovered, quite by accident, that feeding raw liver to dogs could ‘cure’ the canines’ induced anaemia (they made the dogs anaemic by bleeding them). They then started to feed patients at first, regurgitated hamburger meat, and then liver and other offal to those who had been diagnosed as having Pernicious Anaemia. Presumably some patients lived, although I have not been able to establish just how successful this treatment was. During the next decade the practice of feeding slightly cooked liver and other offal to patients diagnosed with Pernicious Anaemia spread to developed countries, though there don’t appear to be any statistics relating to how successful the treatment was in these countries either.

Let’s look at the current treatment which is 1mg of Hydroxocobalamin that is injected intramuscular every three months, usually by a nurse. This injection used to be given every month in the 1960’s and early ‘70’s but was changed to every two months in 1974, and then to every three months in 1984. I have been unable to find any scientific data that would form the basis for this change, and neither have the BNF1 been able offer any.
Why Injections? Because patients who have Pernicious Anaemia are unable to absorb B12 from food, they need to have their vitamin B12 replaced by external administration.

Anyway, why am subjecting you to this history lesson? Well, because Pernicious Anaemia is a fatal disease. It kills unless it is treated using replacement therapy injections. And yet some doctors, and nurses it has to be said, often stop the injections that are keeping their patients alive. And there are a number of reasons for this.

‘Feast and Fast’

Firstly, and this is the most common cause that I’ve heard of, the patient is often undertreated and subjected to the usual ‘Feast and Fast’ treatment regimen where he or she gets a large dose of B12 and is then expected to wait for three months until the next treatment is given. And, as so many patients report, he or she will start to experience a return of the symptoms of the disease in the run-up to the next injection. So, the doctor will then ask for the patient’s B12 to be evaluated and 99% of the time the patient will still have levels that are over the lower threshold for any deficiency. This leads to a number of knock-on effects; he or she will be told that their levels are too high and therefore no injection will be given when it is due and the patient has to wait for six months for another test. The hapless patient will probably be told that the test result proves that the need for a sooner injection is a placebo; and that leads to the patient starting to doubt his or her own intellect – perhaps they are imagining a return of the symptoms after all, perhaps he or she really is a hypochondriac? This despite the fact that the BNF states quite clearly that once the loading doses have been given and the patient’s B12 levels evaluated just to make sure that the injections have worked, ‘no further testing is necessary’.

A second reason for stopping injections relates to costs. Vitamin B12 is mass produced on an industrial scale (two plants in China and one in France) and due to economies of scale the actual vial of the injection is very cheap considering its miraculous life-saving quality – it’s around 30-50p per vial. It’s the cost involved in taking up the nurse-time in giving the injection is what costs the healthcare system – usually quoted as between £10-£20. And nurses give an awful lot of them – one medium sized practice has told me they give at least 5-a-day which adds up to over 1,500 injections per year, and that’s just one practice, at £10 per injection in nurse-time that adds up to a cost of £15,000 per year. Now, if you have an accountant’s eye you would see that figure and think of ways in which that figure can be brought down. If you are a patient with Pernicious Anaemia, you’d think it’s a figure that is not only money well spent but is an essential part of everyday healthcare.

There are, of course, ways of reducing that figure without compromising the treatment of the patient. Self-injection is one way forward, though the currently prescribed treatment in the UK is licensed only for intra-muscular and some patients might find this difficult to do. One way of getting painless, or near-painless intramuscular injections is to use an injector pen which I know some patients do use. Or what about all the other delivery methods that some patients use to treat themselves between injections – sub-lingual tablets, sub-lingual sprays, skin patches, ointment, nasal sprays etc. Nobody has evaluated the efficacy of any of these alternative delivery methods none of which involves a nurse’s time. Nor does oral tablets, very high strength oral tablets of 1, 2 or even 5mg strength. Yes, these do work for some patients – some but not all, just as the raw liver diet probably helped those hapless patients being treated in the 1920’s-40’s. And yet, I know of patients who have tried the tablets either from their own choice as they don’t like what can be a painful injection, or on the advice of their physician. Some patient’s serum B12 will increase but they will still suffer from the symptoms of the disease whilst other’s serum B12 refuses to be raised leaving their doctor to insist that he or she must have injections. There is scope for a real win/win solution to the problem of patients being undertreated though some thorough research is needed to avoid any nerve damage or worse. If you are contemplating using any of these alternative treatments please discuss this with your doctor before doing so.

Lessons

Let’s go back to what we have learned from the current Covid-19 pandemic and the treatment of Pernicious Anaemia. Because of the very real problem of patients’ unwittingly being the cause of cross-infection to front line nurses when they turn up for their regular injection, the surgery will simply decide that no injections will be given during the current pandemic. That’s it! No More Injections for the Foreseeable Future. I am amazed and saddened to hear that often patients will be told this not by a telephone call but by text message or email which doesn’t allow for any meaningful discussion between the patient and the doctor. And when this has happened the patient is suddenly very frightened because not only will he or she have to endure the worse effects of the symptoms of their disease returning, but also, they will know that they risk developing serious and irreversible nerve damage or worse. And so, this is the first lesson that we have learned – individual GP surgeries are autonomous units that can and do make decisions without taking into consideration the needs or views of their patients. Of course, not all GP surgeries have taken such drastic action. We know that some surgeries have simply continued to provide the patient’s treatment – some requiring the nurse to go to the patient’s car and giving the injection through the car window, others using PPE, others just admitting one patient at a time. Others have simply prescribed the injection, provided syringes and sharps boxes and demonstrated how the patient can give him or herself their injection.
And that’s the second lesson, there is no consistency in approach to how patients are treated.

And there’s a third lesson – and this one came as a surprise to me. There’s no one protocol or Guideline that doctors can turn to for help on dealing with the pandemic and treating Pernicious Anaemia. There are guidelines from individual governments and governing bodies, guidelines from the British Society for Haematology (BSH), guidelines from the RCGP, guidelines from the Clinical Commissioning Groups, guidelines from Trusts, guidelines, guidelines and guidelines. And so, what’s wrong with this. Well, if they all stated the same information on what to do then there wouldn’t be anything at all wrong with this – but, unfortunately, they all state different things. For example, the initial guideline from the RCGP stated that ‘where appropriate’ patients should be instructed how to treat themselves, something that the guideline from the BSH was set against at least for the duration of the pandemic. Some government agencies stated that patients should be assessed for the symptoms of Covid-19 by telephone on the day of their injection and, if there are no symptoms, the injection should go ahead whilst other government agencies stated that it’s entirely up to the individual GP practice to decide on what to do. No wonder that there is no consistency in response by healthcare professionals – it’s a very confusing picture.

The Future

Let’s hope that we don’t have to face another pandemic such as Covid-19 in the near future or have to face up to another second wave of this current one. But if we do then there is a clear need for there to be drawn up a plan that can be put into operation that will offer a consistent response to patients needing their life-saving treatment and at the same time protecting front-line workers. And to do this effectively, it is essential that the views and concerns of patients are taken into consideration by the panel that would produce the plan. There remains, of course, the problem of which organisation should take the lead in assembling the various interesting bodies – and that I can’t help with.

1. BNF stands for the British National Formulary, a joint publication by the British Medical Association and the Royal Pharmaceutical Society. It contains information on dosage, side-effects etc. of medicines.

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Comments

12 Comments

12 Comments

  1. Clive Parsons

    In 1972 when diagnosed with P.A. after two Schilling tests (the first in 1968) my then doctor gave me two options – to eat raw liver three times a day or have cyanocobamalin B12 injections every four weeks for the rest of my life.

    I opted for the injections and am still “clivealive” coming up to aged 79

    Reply
  2. Susan Childs

    The feast or famine phrase is so apt. If only the U.K. would accept that subcutaneous injections were ok and we had a device like the insulin pen to inject small daily doses or the phials were smaller so we could do weekly jabs and that they let us take control.
    Praying for some entrepreneur to help us out on these technical issues.
    Also it would be wonderful if we were guaranteed supplies of hydroxycobalamin but foreign trade has been disrupted by covid 19 and Brexit is not helping. It would be great if it was manufactured in our own country.
    So many hopes but so many fears . Thank you PAS for being our supporting network especially in times of crisis. Big thanks to Martyn.

    Reply
    • Anne & Tony Croft

      Thank goodness one of the GPs in our practice recognises my wife’s need for everyother day IM B12 and that I am able to do these for her. She can’t miss an injection and always feels better on injection day. She has been on this regimen for a year now and is still improving very slowly but noticeably.

      If it wasn’t for PAS and Martin in particular she wouldn’t be recovering as she still is. We do agree with Susan Childs observation re supplies and an easier way for self injection.

      Reply
  3. Liz

    Thanks martyn very interesting read.
    I’m new to blogs so hoping I’m doing this right . I got diagnosed last year it took me being rushed hospital with pneumonia . The hospital found fault with heart . Thankfully nothing serious but my symptoms weren’t improving they said something else going on . Off which I’d been saying for years to doctor . I was thought on as neurotic mum who was faking it for benefits system . Anyway I asked my doctor for blood test results at one meeting he said your b12 low but always has been .so because I’d read article on b12 deficiencies I asked was it being absorbed . Hence I was sent more blood tests which came back positive . That was last July . Still getting head around it all but feeling much better . Martyn is a saviour . Heartfelt Thankyou to you martyn . Thank god you were there at end phone when I was in distress . I’ve learnt so much since . I’m going start learning to self inject as need more than 3 month injection .

    Reply
  4. Marie Vose

    I am a 69 year old woman.
    I have received injections of hydroxocobalamin to treat a diagnosis of perniciouis anaemia for 9 years
    Three years ago a consultant haematologist reccomended to the surgery that I should be receiving treatment every six weeks. My surgey doctor quite happily complied and I felt the improvement quite soon after.
    Around about the same time I was also diagnosed with hyperthyroidism and diabetes which are probably linked with auto immune disease. To cap it all I then developed Chronic Kydney Disease (CKD), Vasculitis (Giant Cell Arteriitis), Malignant hypertension and Asthma.
    Apart from the above Im still Alive.
    However imagine my consternation when the surgery nurse who administers my injection commented to the fact that I shouldnt be having these injections every six week and questioned who authoried it? (This was weeks before the virus struck)
    I told her that it was a consultant haematologist at an appointment in 2017., and showed her the letter. She commented to the effect that “……..yes but it is only a reccomendation”.
    I suggested that if it wasnt for the surgery Doctor accepting the reccomendations of the countless consultant physicians who saved my life over 7 weeks in hospital, I certainly wouldnt be here now.

    There certainly seems to be a disconnect between Physicians and other surgery staff with Partners in these Practices seeming to back knee jerk money saving ideas coming from the “suggestion box” . I have seen examples of this on many Practice web sites across the country but not, I am happy to say on my Practices web site.
    When I spoke to the doctor about what the nurse had said a week after, he was quite happy to add a note to my record reccomending 6 x weekly injections be maintained.

    The punch line to all this is that my injections have now been stopped for the duration because I am deemed to be extremely vulnerable. I was then offered a course of a placebo which I will not be takig because I do not know how all this will affect the other auto immune conditions that I am still being treated for by other consultant physicians.

    Thanks for the clarity Martin and I wish you well for the future.
    The surgery have stopped all (what they call) …non-essential injections including mine.

    Reply
    • Martyn Hooper MBE

      No – the BNF doesn’t state no further testing – it’s the BCSH Guideline that states no further testing.

      Reply
  5. Thrones

    As a newbie to all this ve been absolutely overwhelmed by all the conflicting advice around.
    It’s so hard to absorb any new info when your feeling so unwell and getting no support from the medical system,I include the nhs and private sector in this,they have made a bucket load of money from our hard earned savings on this.Ive read and read till I’ve had smoke coming out my ears lol absorbed some of it but not all due to still struggling with results of a bad head injury after one of my many falls.I eventually managed to get a private endo to recommend loading doses of b12, After he looked at my private MMA test results and decided I had functional b12 deficiency, to my gp which he did follow through with 6 shots then every three months follow up,I’m now having to self inject because I felt a massive improvement during those 6 injections but by second day between them was flat again so knew my body was crying out for them..everything I’ve did I’ve self diagnosed with the help of blood tests and my friends advice on the forums,gps and consultants have simply sent me for invasive tests and biopsies which showed nothing to account for all the horrendous symptoms I had.The endo also recommended that I have further investigations for my dire cortisol results and my possible pituatory damage sustained during head injury,gp declined using lockdown as an excuse.I have definately progressed by self injecting at my own expense but sadly the support from nhs/private is non existent and so we carry on with our symptoms to including numb burning feet and legs with help from forum members or people like Martyn who are desperately fighting our corner for us when they are also sufferers themselves.Bless you for your help and kindness.

    Reply
  6. Jackie Heald

    I have been receiving injections now for just over 2 years, every 12 weeks. After 10 weeks I start with the neuropathy my feet, overwhelming fatigue, eyes twitching and a sore tongue to name just a few. My GP refuses to increase the frequency of injections. No amount of tablets, spray, patches or anything else helps and when I read that they may help I worry as Doctors seem to pick up on these suggestions and push patients into taking oral B12. They won’t work, if you can’t absorb B12 through diet then you won’t absorb via tablets. The recent debacle of denied treatment due to the pandemic pushed me towards self injecting and then increasing the frequency as my GP should have done. I can say I have never felt better, one for the extra B12 and secondly for taking control of my own health and well-being and not relying on a system that focuses on cost and has a blanket approach to this condition. In my opinion legal action needs to take place, probably via a judicial review, in order to have one consistent approach, pandemic or no pandemic and for Pernicious Anemia to be taken seriously. Pernicious means death, how much more serious can it get.

    Reply
  7. June Ingles

    B12 injections for both my husband and myself have now been stopped permanently in accordance with Glos CCG instructions. I have Atrophic Gastritis and PA and am carer for my husband who became disabled after a stroke shortly before being diagnosed with B12 deficiency. He clearly also has absorption difficulties so I have no belief that oral treatment will be effective for either of us. Complaints to my GP and the CCG citing NICE and BSH guidelines are rejected. To cope with increasing neurological symptoms I had an injection recently by a private GP but I am very concerned about my husbands increasing incontinence as a direct result I feel sure of lack of effective treatment. I am worried this may become irreversible damage.

    Reply
  8. Maureen Gray

    I was diagnosed with PA back in 2007. after attending doctor with numb painful feet and exhaustion after several weeks of no improvement as everything from job I was a carer and eventually being sent to rheumatology was blood tests done showing extremely low b12 levels after two schillings tests I was eventually diagnosed with P A sadly by then my nerve damage was irreversible and despite 3 monthly injections I continued to get worse only with the help of the PAS wasI eventually allowed 6weekly injections although I could do with having them monthly as after 3/4 weeks I begin to get more breathless and exhausted, now with the Covid crisis I was told injections would stop indefinitely and again with the help of the society I eventually got my last injection then told I could self inject this I will attempt in the next week I will always be grateful to the society for all its help and can only suggest don’t give up on your rights to proper treatment your life depends on it .

    Reply
  9. Doreen Kaufman

    While reading the comments written by pernicious anaemia patients I realise my frustrations , symptoms and treatment are similar to others. One particular problem is having a sore tongue this has never been acknowledged from lacking in B12. My mother was diagnosed in the 1980 continued to have vitamin B12 infections every 2months and lived without all the problems we are expected to put up with these days.
    Is this called medical progress? There appears to be a lack of understanding of patients medical needs to help with day to day living. In particular peripheral neuropathy nowadays can be quite a serious problem to many of your members.

    Reply

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