New to the site

I was first diagnosed with PA 16 years ago at the age of 35. I was on 3 monthly injections until approx 2 years ago when I persuaded my GP that I was finding it extremely difficult to last out the final 4 weeks. I have a very demanding job and an almost 2 hour commute each way into central London 5 days out of 7. On one of my last visits to my GP for my injection he insisted that I go for a blood test before the next was due. When i went back to discuss the results he started blathering on about how i had enough levels of B12 to last me 2 years and that I should try & "last out" until approx 10 weeks preferably going back to 3 monthly injections. He then said something that totally confounded me in that a person could have "too much B12 and that it was bad for me"! i asked him somewhat tongue in cheek if that meant that i no longer suffered from PA and was I cured?? My next (8 weekly) injection is due next week and I have duly made an appointment but I suspect that my GP will no doubt chastise me for not at least trying to "last out".

It is really interesting to find that other PA sufferers in the UK also have to put up with this level of treatment by the medical profession for what is after all an extremely debilitating illness.

Oh and another thing, does everyone else agree that it is disgraceful that the vitamin itself is not exempt from prescription charges in England?

8 Replies

oldestnewest
  • Too much B12 is a common misconception. Read this article - stichtingb12tekort.nl/weten... - and maybe show it to the doc.

    It is strange that PA doesn't qualify for a medical exemption certificate, like what diabetics get.

    A diary of symptoms over severl months may help. I plotted mine onto a graph -

    frankhollis.com/temp/Fatigu...

  • Thanks for the reply - I will definitely show the article to my GP next week

  • Hi,

    You might find stories similar to yours on Martyn Hooper's blog

    martynhooper.com/

    Uk b12 websites

    Are you a PAS member?

    pernicious-anaemia-society....

    PAS tel no 01656 769 717

    b12deficiency.info/

    b12d.org

    Have you read Martyn Hooper's latest book? it's up to date with current UK B12 Guidelines.

    What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency

    I also found "Could It Be b12" by Sally Pacholok and JJ. Stuart useful.

    "that I should try & "last out" until approx 10 weeks preferably going back to 3 monthly injections"

    If you have neurological symptoms then my understanding is that you should have maintenance injections every 2 months.

    Symptoms lists

    b12deficiency.info/signs-an...

    pernicious-anaemia-society....

    See PAS Symptoms Checklist in above link.

    See page 8 BCSH Cobalamin and Folate Guidelines for details of recommended UK B12 treatment for b12 deficiency both with and without neuro symptoms. These guidelines came out in 2014. I found page 29 a diagnosis flowchart useful too.

    following link has B12 treatment info based on BNF (British National formulary) Chapter 9 section 1.2

    patient.info/doctor/pernici...

    pernicious-anaemia-society....

  • fbirder has complied a useful summary of mainly Uk b12 documents that has quotes that help to tackle some of the common misconceptions some people have about b12 deficiency. If you search his posts you shoudl find a link.

  • Have you tried other ways of supplementing - I find that nasal sprays work well for me and they are convenient.

    The whole sets of rules in relation to prescription charges are really in need of an overhaul - as is so much of the law in relation to prescriptions.

  • Re enough levels of B12 to last - yet another GP who hasn't kept up with latest research - see latest BMJ research document (bottom of page 4 under 'How is Response to Treatment Assessed' :

    cmim.org/pdf2014/funcion.ph...

    "Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."

  • I continue to be dumbfounded to hear all your stories regarding treatment in the UK. It sounds like most medical practitioners simply don't believe how sick PA can make a person. There is a new med on the market here called Eligenb12. I haven't tried it yet, my next Hemotalogy appointment isn't until next month. It supposedly can be orally digested even if regular b12 supplements can't. It's a daily pill instead of shots, nasal sprays, patches, and sublinguals. Has it made its way across the pond? It may be worth looking into.

  • Doctors in the UK are very poor on all sorts of chronic health problems - PA, hypothyroidism, iron deficiency anaemia, endometriosis and any other gynaecological ailments, chronic pain. But they are really, really good at dishing out anti-depressants.

    To be fair though, if I ever had a serious accident I'd rather be treated in the UK than anywhere else in the world. They don't stop to check how fat your wallet is before treating people.

You may also like...