I was diagnosed with PA now my prescription just says B12 deficiency

Hi all,

My prescription used to list my B12 injectiobn for PA....now they made me have the tablet form my script says it is for Vit B12 Deficiency.

At the end of the day it doesn't really matter what it says but I feel as if they are saying it is my own fault for getting deficient.

Maybe I am over reacting because I am now having to battle with gp and probably higher to stay on injections.

Like many others I self inject between nhs ijection ( tablets now ) so should just ignore this but I really feel like they are cost cutting and downgraging the importance of the correct treatment.

5 Replies

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  • WHAT IDIOT ON WORK EXPERIENCE REVIEWED YOUR PRESCRIPTION?

    If you have a diagnosis of P.A. you are on injections for life. Tablets will be no use.

    You need to confront your doctor, jump up and down and wave your arms about until he changes it or alternatively join the Pernicious Anaemia Society and ask them for help

  • Like Clive says, tablets are no use to you if you have P.A. How can they redefine your condition without any proof or reason or notice? That would be like renaming skin cancer as a severe case of sunburn! No you are not overreacting at all. This is all hard enough the first time round, surely.

    What on Earth can be so precious about a bloody vitamin - apart from to anyone who is unlucky enough to be unable to make it for themselves?

  • Hi Ellj. Oh dear, we have heard of this happening to quite a few people recently.

    Suggest you print off the document from the B12 Research Institute (the first document in the third pinned post) and take it along and show your GP (it a serious caution notice about the use of B12 tablets).

    Prescribing B12 tablets for pernicious anaemia is not in line with any current guidelines - which are available in the PAS pinned posts, if you want to check.

    PA means absorption problems. Absorption from a tablet is approximately 1% - not much, especially as you won't absorb it. Absorption rate from an injection is 100% - and you'll get it all. Ask your GP which method of treatment he would like if he had PA.

    He might tell you that recent studies have shown that absorption from tablets is still possible with PA if you flood the body with it. However, the U.K. is only licenced to provide 50mcg tablets - the 1000mcg you would need is not licenced for prescription in the UK. And there is no guarantee that you would be one of the people it works for. And this is not an approved protocol for the treatment of PA. So tell him that if he waffles about recent research. Which of course you could trump with your own current and very much in place guidelines and evidence.

    I'd go back to see your GP, with the evidence, and ask for your injections to be reinstated.

    And was this simply done without any prior discussion with you? Disgraceful. Not surprised that you're cross.

    Good luck 👍

  • not good - think you need to contact the surgery and clarify why things have changed.

    Also, what strength of B12 are you being given by way of tablets - if it is 50mcg cyano and you have an absorption problem then it is just going to be a matter of time before you are deficient again - it really isn't the treatment you need.

    Very high dose tablets - 1000mcg a day + - can be effective for some people because 1% of B12 is absorbed outside the ileum but this isn't currently a licensed treatment in the UK and it doesn't work for everyone ... and it shouldn't be a regime that is forced on anyone without a choice.

  • Have you considered getting a complete set of your medical records in print? Can be expensive, think at least £50 but would hopefully have some evidence of a PA diagnosis.

    I assume at some point you had an IFA (Intrinsic Factor Antibody )test that was positive so it should be possible to ask for a copy of the results of the IFA test, probably cost about 50p to £1 per sheet.

    Must add that it's possible to have PA even if IFA test is negative. See BCSH Cobalamin and Folate Guidelines for mention of Antibody Negative PA.

    it is possible for some people to access a summary of records online but this won't necccessarily have all of your medical info/test results. Think most surgeries will allow people to make an appt to view their records.

    nhs.uk/NHSEngland/thenhs/re...

    In a previous post you said you had joined the PAS. They can sometimes intervene on behalf of members whose injections have been stopped especially if they have a confirmed diagnosis of PA.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    martynhooper.com/2016/08/02...

    martynhooper.com/2016/09/23...

    "now they made me have the tablet form"

    If you look at BNF( British National formulary) Chapter 9 Section 1.2 also BCSH Cobalamin and Folate Guidelines it clearly mentions injections as the recommended treatment for PA.

    b-s-h.org.uk/guidelines/ Click on "Diagnosis of B12 and Folate Deficiency"

    Link about writing letter to GP. Think point 8 might be relevant to you. Don't think BCSH Cobalamin Guidelines are mentioned which I mention if writing letters about b12 to GPs.

    b12deficiency.info/b12-writ...