Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

I’m Back!

by | Sep 8, 2016 | 15 comments

Now a number of people have been concerned that I haven’t been posting for a while. Some imagine I’ve been on holiday, others that I’ve had nothing to report – well the truth is that I’ve been tied up with a major media campaign. One of our members had contacted her local BBC television centre to tell them how awful she felt on the three-monthly injection prescribed to treat her Pernicious Anaemia and that she had been forced to source further injections from the internet.

The BBC contacted me and immediately asked me to not tell anyone about the story that they were constructing. That’s why I haven’t been posting – I’ve been busy trying to brief various journalists and producers. Well today the embargo has passed and I can tell you that this whole issue of treatment is going public via the BBC. I had to go to the BBC Wales studio in Cardiff on Tuesday to be interviewed on camera, BBC Radio Oxford interviewed me live at 7am this morning (Thursday), I’ve another live interview with BBC Berkshire at 8am and then the television piece goes out via BBC South Television. Then it should be picked up by BBC National.

Consider the following:
Treatment in the 1960’s was an injection every month
That was changed to every two months in 1974 and then to every three months in 1984. I have been unable to find any scientific evidence that was used to justify these changes.
According to our survey 64% are unhappy with their treatment but that figure would be much bigger if people weren’t supplementing using some kind of B12.
And, as one Consultant Physician told me for my latest book, when he was diagnosed with PA he phoned a GP friend who had also been diagnosed with the disease and was told “the first thing you do is throw the BNF out of the window as their treatment regime is useless”.
Ah well, let’s ignite the debate and have a grown up conversation about this eh?

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  1. Michelle

    All beginning to make sense, now, all these new yuppie diseases, so many being undiagnosed, undertreated, misdiagnosed.

  2. Karin Hewer

    Glad to see it is being addressed.Sadly my experience is there is still ignorance about PA, and B12 levels within the medical community .
    My dad had pernicious anemia and his injections were stopped because he was told his B12 levels were high and he no longer needed the injections.My dad being old school accepted this and we only know now that they should never have been stopped.I often wonder if this contributed to his death from bladder cancer .

  3. Pat Osborne

    Thank you so much for your amazing work. I am a 57yr old Practice Nurse married to a GP who has saved my life more than once. Fortunately he l
    Knew I needed B12 jabs 6-7 weekly. I have a very long complex history that I would be happy to share. Briefly this year I was given Azathioprine for Type 1 allergy, delayed Type 4 allergy to compositae (daisy family) and nickel and urticaria vasculitis. I had to stop it as my white cells dropped to 0.4 and my liver was very upset. Although my blood tests improved I became more and more unwell both mentally and physically. I had sidelined my PA and concentrated on the allergies. Randomly checking my B12 levels they had dropped from 1500-2000 to under 500. We were horrified and started reading the PAS website and buying Martyn’s books. I had daily B12 for 2weeks and am now on alternative days. In between in use a patch and oral B12 and a high dose folate. My bruising has abated, energy levels rising, concentration and severe brain fogs clearing. Stomach working better than it’s ever done. I’ve stopped vomiting every day and reduced heartburn to hardly ever.
    PA killed my great grandmother and I have inherited it from both parents. We have just started our 29yr old son on b12 jabs and his blurred vision has improved in 3 days. We fully intend to join the PAS and would love to learn more and help if we can. Thank you beyond words and good luck with the campaign.

  4. Kaye Mcnab

    That’s unbelievable! I suffer from PA and 3 monthly injections are useless so I buy B12 tablets and take two a day. I still have symptoms though but the doctor will not listen and it seems it’s a matter of one size fits all despite what you tell them. No doubt it’s all about money.

  5. Josee Allen

    The tablets available in America seem to be OK. I buy ‘patches’ from an online supplier. Doctors still look at blood tests and assume all is well, but having my mother and grandfather with the disease I know it takes several forms, not all detectable with blood tests. By the way both mother and grandfather died from the disease. The National Health Service should be sued for reducing the doses to every three months and not given on a need basis. In the end it is only lawsuits that make government agencies sit up and take notice. A friend in France had his stomach removed last year.. and the stupid doctors said the numbness in his hands and feet would improve over time… is every medic stupid? YES! Except the young (then ) doctor who diagnosed my mother after she had been seen by every specialist in London to no avail. More needs to taught at the medical schools about this deadly disease.

  6. Libby

    My mother had PA, diagnosed in her mid 30,s.she moved to Portsmouth in 1990 and was then told she didn’t need 6 weekly injections, Gp moved them to 8-12 weeks. Due to my mum being old school also, I went to the GP with her and demanded 6 -8 weekly, which she then received.. She unfortunately died of stomach,liver and kidney cancer in 2012 ( she was 77) of ‘ NET ‘cancer, which unfortunately is a common side effect of regular B12 injections. My mum wasn’t given hardly any info on the condition, let alone the side effects. ☹️????

  7. Isabelle Riar

    Good luck with the campaign Martyn, great work!

  8. Mandy jones

    So little awareness of this in by professionals. I registered in December with a new gp’s. When I went for my injection with the practice nurse u asked I her if my b12 blood results had come back. She said they had but as she knew nothing about pm she said she would write it on a piece of paper then I could google it when I got home.

  9. Lisa

    I was diagnosed b12d a year ago and given 3 month injections. In between i would use tablets, patches and sprays to try to make a difference to my increasing symptoms. Then i was diagnosed coeliac, which meant that anything that went to my stomach was, in essence, useless, but i still dont get my injections more frequently even though they know i still have problems and cant absorb from the foods i eat.

  10. Frank

    Just to abate any possible fears that some readers may have…

    ‘Net cancer’ is a rare consequence of autoimmune metaplastic gastric atrophy (AMGA – which is the cause of PA). It’s not a side-effect of regular B12 injections.

    And gastric NETs (NeuroEndocrine Tumours, also called gastric carcinoid tumours) caused by AMGA are normally quiet little things that keep themselves to themselves. The recommended treatment for mine is to have a gastroscopy once a year just to keep an eye on the little blighters.

    • Martyn

      This is what the research is looking into.

  11. Mabsie

    Brilliant news Martyn. Someone was brave making initial contact with BBC!

    I have bi-monthly injections as per my endocrinologist but I still get questioned by the nurse every time.

    PA seems to be in our family and I know three generations and there’s a query on the fourth at the moment.

    Will you be able to tell us when the programmes is aired?

  12. cheryl

    Am on 3-monthly injections and know its not enough: exhaustion, hip and back pain, hair loss, mood swings, going to toilet 5-7x daily. Have had to give up teaching this week, mutual consent and thankfully support and recognition from most, and hopefully will not be for good.
    Doctor however does not believe all these to be B12 symptoms (despite being on 3-monthly injections) so have had endless tests, consultants, etc. Now she believes I am depressed and have irritable bowel, possibly dairy intolerant….all this is hard, and even harder for partner

  13. Jason

    Thank you for all the comments. These are especially helpful to me, as I have only just been diagnosed with PA. I am waiting to speak with my GP about a treatment regime and having read these comments will, I am sure, prove invaluable.
    I was interested in one comment about blurred vision. I did not appreciate that this might be a symptom of PA and now I suspect that my increasingly bad vision could be part of the condition.
    I also had a great call from Martyn and linking in with another comment am strangely relieved to discover that bizarre bruises are also probably PA.
    one symptom I have which I am not sure anyone else has is that when I feel especially bad that I have to lie down my upper arms suddenly loose all strength and I get severe chest pains which I can best describe as like heavy bruising. Could it be that others have experienced this too.

  14. Leanne

    So I have PA and I also have Spasmodic torticollis (tics, physical and vocal) which I find are particularly bad when my levels of B12 and iron are low (like now).

    I find my levels aren’t being checked regularly enough and will now nudge the docs when I think it should be reviewed rather than their standard yearly test.
    I was having a really bad month energy wise with a lot of other symptoms (tearfulness, forgetfulness, lack of concentration at work, bruising easily, walking into things…).

    I have just come back from Docs who have agreed to move my injections to 10 weekly. I can’t believe how easily that was agreed, after years of being told there is no medical benefit to being given early injections. I think it was because my tics are so severe they agreed. I was also given ferrous fumarate to take 2 times a day. I read about also taking folic acid. Does anyone know if this helps?

    I saw the video about the lady who buys the injections and self injects and was thinking of doing this, but thankfully armed with that information and my tics, I believe the doctor was more accepting of my reasons for wanting shorter intervals between injections. I am so glad I have found this site and the PAS,recommended by a mum at the school whose husband has PA and she noticed my tic. He has his B12 every 3 weeks. So I was adamant today I would not take no for an answer at the Docs.


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