Martyn Hooper MBE – Chair of the PAS

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A Doctor’s Email

by | Dec 1, 2017 | 7 comments

A Doctor’s Email

Dec 1, 2017 | Pernicious Anaemia | 7 comments

I recently received an email from a GP who wanted to know if we knew of anyone who required weekly injections to live a more or less normal life. I replied that I had and that many of our members need much more frequent injections than the standard every 3 months in the UK.

“Thanks for your email Mr Hooper.
Actually, this is my second patient. The first gentleman is on daily injections, but still gets some symptoms.
This lady is on one injection a fortnight, but still has such profound fatigue that I think she will need it weekly. I am concerned there are other abnormalities in the pathway that I haven’t addressed. I am also going to start her on folic acid.
Please do keep me in the loop if you know of any other data which might help, any other tests I can do or any other supplements that might help. It’s frustrating as a doctor to not know WHY some patients don’t get the full benefit and what I can do to make it better”.

There are a number of things that the email illustrates and which need to be discussed.

Firstly, there are doctors, perhaps a growing number of doctors, who are now aware that treatment of Pernicious Anaemia needs to be tailored to the individual need of the patient. Hurrah! I hear you shout. But there’s a problem here. Whilst GP’s are allowed, nay even encouraged to make sound clinical decisions for the benefit of their patients, it has come to my attention in recent weeks following a number of meetings with GP’s that the Trusts which oversee the contracts with the individual doctors are increasingly monitoring the prescriptions written by surgeries and even individual doctors. Where there is perceived to be excessive prescribing of a particular medicine the health centre or individual doctor is told to reduce the number of scripts to bring the surgery or doctor in line with ‘normal’ prescribing practice. So, even though the GP above will want to treat the patient on an individual needs basis she may well be told that this practice is not acceptable and will be told to stop.

The second point is that the failings of the way in which Pernicious Anaemia is diagnosed and treated leads not only to frustrated patients but also to frustrated doctors.

And, thirdly, it just shows the need for some robust scientific research into why some patients manage perfectly well on a three-monthly regimen while others, including the patient mentioned above needs a daily injection.

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  1. Linda CADLE

    Firstly thank you for all the work being done on our behalf.
    I had my last B12 on 14th Nov and am still fatigued/exhausted feel and achy.
    Before last injection i visited doctor as felt so bad,she wouldnt give me B12 early but i had to have blood test instead….which showed B12 level was 545 and told i should be alright..i said i wasnt so she agreed i could have injection at 10 weeks….when i saw nurse for B12 i asked why my prescription still said 3 monthly..she read notes and it said i could have 10 week this time then it goes back to 3 monthly……which means i have got to go back for another appointment and try to get it changed again….
    I am not good at talking to doctors..and last times i,ve burst into tears…Next appointment i will ask about self injecting…i dont want to SI but i am getting desparate….Linda Cadle.

  2. Josee Hawkins

    My Grandfather died of pernicious anemia, long before it was possible to treat it. He survived (he said on “Fersolate ” tablets . They were, I think iron tablets, but he thought they helped. My mother was obviously suspected of having the disease too as she was fed raw liver as a child. She was born in 1907. She failed to thrive as an infant and had what we now know are symptoms of the disease. In the 1960’s a newly minted Doctor diagnosed her and put her on the injections..he said it would last a year. Within three weeks she was sick again. She had injections every month, but really she should have had them every three weeks. There was a lot of nerve damage but she coped. She did have six pregnancies but only one live birth, me. When my parents moved from England to live with me in Texas the doctor had no clue and insisted that she “made the vitamin in her own body and did not need the injections”. My father fought for her to be treated. Unfortunately I had to leave my parents to go on an extended trip and she was not given her injections. Within two months the damage was so bad that she died. I have at least one cousin in England who has the injections once a month. for three weeks she is OK, but the last week I am told she just lies on the sofa. I have some nerve damage and other symptoms (sudden pains like a red hot knife in my head, sharp pains in toes and numbness in legs, not bad, but I am careful) My four monthly blood tests (routine in America for older people on Medicare) do not show any PA, but I occasionally use ‘patches’ that I buy privately.I don’t think my doctor would approve !I do know that my maternal grandmother’s four children who died as two and three year olds had stools that resembled small, hard grapes ( a symptom of PA) My mothers skin coloring as a baby was so dark that people would ask her Nanny if she was a “half caste” I have a cousin with the same dark skin and is thought to be ‘indolent’ but I have a suspicion that it is the dreaded ‘family complaint” The young doctor who diagnosed my mother said that she had a ‘rare form’ of the disease. Could it be that there are different types and that is why some people need more injections? Is it possible there is another form of the disease that is more rapacious? Hope this is of interest.

  3. LM

    I am in despair at this situation. It is completely insane. I can’t think of anything more to say about such a broken system. How many people are suffering and will continue to suffer broken lives because of these ridiculous policies? The situation is urgent, and should be urgently addressed by the medical profession, who should be in charge of their own prescribing. Otherwise we are all just collateral damage.

  4. Michelle

    I got diagnosed in my early 20s I’m now 44 and I used to get 3 monthly injections but I know my own body and knew that I needed them more frequently I eventually got the Dr to agree to give me them every 2 months but after 2yrs they did a blood test and said I only need a top up injection yearly but after a blood test confirms it. It’s been 3yrs now and I’ve not had an injection, but I got the Dr to agree to give me b12 tablets before I started the tablets my b12 result was 228 after finishing the 3 month course of b12 my blood result was 216 a month later it’s gone down to 210 and there still saying I don’t need the b12 injections, all I know is my Health has deteriorated since stopping the injections.

  5. Bree

    I know this is a bit late but I am in the US and on weekly injections for the past 2 and a half years now. I was untreated with neurological complications for a full year before diagnosis. Once diagnosed I was put on weekly injections. The improvement was barely perceptible for several months. After that, I had incomplete neurological improvement for a handful of hours after each shot, then quick decline. At about one year out, improvement would last about 3 days, then I’d be dragging and numb until my next weekly shot. All the symptoms would return by about day 4 – numbness, loss of coordination, deterioration in mental state, aversion to food, the sighs, etc.

    At a year and a half out, my improvement began to last through the week. My appetite returned. But if I missed a shot, my symptoms would return, beginning with numbness of the lower legs. By exactly 2 years out, I noticed my sense of fine, precise touch had returned, and my proprioception. I could raise my hands behind my head and tell where my arms were in space. I now feel more or less stable on my weekly shots.

    The thing is, the early symptoms are quite subtle: pallor, fatigue, mood changes, appetite changes, deadness in the legs, so it’s easy to miss. If I miss a shot now, the symptoms will come back a couple weeks later. As I am on weekly shots, it’s easy to assume the next shot will fill the void. But in fact it is a setback and I need to play catch up.

    I am astounded that anyone can survive on a few shots a year. At my worst, I would have preferred 2 or 3 times a week. Even weekly was not enough for me. Honestly any less than at least twice a month, and I don’t think I would have made it.


      Hi Bree.
      I am in the US as well.
      I had treatment similar to yours initially and have been getting them monthly for about 11 years.
      I agree with you and can’t imagine how I would ever manage with less than that.
      Stay well 🙂

  6. Karen

    Dear Friends.
    This is all so crazy isn’t it?
    I live in the US. I was in my 40s and had not well for 6-8 years when I was diagnosed with a B12 deficiency (my sister-in-law is a dietitian and said I needed a blood test immediately based on her observations). I was deathly ill at time of diagnosis with severe symptoms including memory loss (unable to find my way home, remember the names of family members, recall conversations and entire days) loss of vocabulary and slurring of speech, loss of equilibrium/balance/coordination, exhaustion, insomnia, infertility/miscarriage, numbness in hands and feet, headaches (migraines and then diagnosed and treated for temporal arteoritis), fainting/losing consciousness mid activity (both while while driving and swimming-hospitalized!), gastric and digestive issues, long bouts of being too ill to work… I could go on and on.
    It was horrific. I had full availability to healthcare and was subjected to multiple tests and misdiagnosis, eventually ending up on a variety of meds for anxiety, depression, insomnia, migraine headaches etc etc. Still being told I was physically FINE, that it was all psychological (in my head/imagined/brought on by negative thinking)
    Friends, family, co-workers accused me of being crazy, attention seeking, a drunk, even a heroine addict because of my appearance and behavior.
    Skip to diagnosis and treatment… After being diagnosed with a B12 deficiency I received intense treatment of 5 injections (inter-muscular) per week for 4-8 weeks (I have such neurological and memory issues I cant say for sure), then weekly for several months, and then monthly… over 2 years of treatment before I was well enough to live on my own again.
    I have have been getting B12 injections (if I can’t see a doctor I get a script to self inject) for almost 13 years . I have never gone without… if I don’t have a doctor, somehow I get to a clinic. I know (some doctors don’t) how very sick I can get. However, while traveling last month, I couldn’t get my prescription filled (insurance/doctor glitch) and ended having a 5 week lag… I was so incredibly sick. It was frightening. I started to feel the way I did back in “the lost years”.
    I am telling you ALL this because I cannot imagine going as long as some of the folks have to go between treatments. I read some of the posts and wonder how they ever start to feel well.
    How is it that there is such a difference in treatments in the US vs. the UK?
    PS. I was also diagnosed last week with Pernicious Anemia (officially) after receiving proper blood work test results- I was
    diagnosed by a doctor many years ago but it never made it in to my charts. Now that the PA diagnosis is in my charts, hopefully receiving proper care for my conditions should be easier… at least I don’t have to keep re-explaining and re-educating. It is exhausting and frustrating. And some doctors still aren’t familiar with its effects and look at me like I am a tad crazy.

    Good luck.
    Thanks for asking.
    Thanks for listening.

    Keep on keeping on!


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