4 year battle to get injections reinstated

I have just started loading doses and hopefully will start to feel better soon.

My daughter put in a complaint to nhs England after I had injections stopped after 19 years of having them.

they reckon in 1992 it was not possible to have a test for intrinsic factor antibody test. I'm sure I did .

they also said if b12 levels are high and intrinsic factor antibody test is negative. its acceptable to stop injections

I'm sure I'm being fobbed off.

has anybody seen this in the guidelines I cant find anything about this.

thank you

sally loade

8 Replies

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  • Hi,

    Have you spoken to the PAS? If you are a member they can sometimes intervene by writing letters.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    There are stories on Martyn hooper's blog about people who have had injections stopped and how the PAS has helped..see links below.

    martynhooper.com/2016/04/24...

    martynhooper.com/2016/04/30...

    "they also said if b12 levels are high and intrinsic factor antibody test is negative. its acceptable to stop injections"

    Have a look at page 29 in the "BCSH Cobalamin and Folate Guidelines" which is a diagnosis flowchart for B12 deficiency/PA and shows the recommended process GPs should go through with someone they suspect has a B12 deficiency/PA. This document came out in 2014. What year were your injections stopped? If it was before 2014, the GPs etc may have been relying on NICE guidelines or local NHS B12 deficiency guidelines.

    "they reckon in 1992 it was not possible to have a test for intrinsic factor antibody test. I'm sure I did ."

    Have you ever asked for a complete set of your medical notes..will probably cost at least £50. sadly notes, letters etc in medical files can sometimes go missing.

    Perhaps the person who runs this website might be able to help.

    b12deficiency.info/b12-writ...

  • There was a lot of research done on intrinsic factor antibodies in the 1960's and early 1970's so I would imagine the tests for it were around by 1992 but I could not find anything. Perhaps some of the members of the forum who have had PA or B12 D. for a long time will be able to remember.

    Sometimes 'people' say things to get rid of you'!!!

  • I had two "Schilling" tests - one in 1968 which proved negative and the second in 1972 which proved positive for P.A.

    The test involved having a huge injection of cyanocobalamin B12 plus drinking a glass full of radioactive B12 and going home with a huge container for collecting urine over the next day or so.

    I "believe" the Schilling test was considered more accurate than the modern one but is no longer used due to the difficulty in obtaining radioactive materials.

    Ironically the first test injection probably boosted my B12 level and further delayed my eventual P.A. diagnosis to make it 13 years after I'd had two thirds of my stomach removed in 1959. I'm sure there was clue in there somewhere.... :)

  • Does anyone know when the Schilling test was discontinued, perhaps that was when the present test came in.

  • The Schilling test finally became unavailable during the BSE crisis - seems some part was derived from cattle. I posted a response a few months ago...

  • I had the Schilling test in 1999, after lots of problems after Bowel cancer in1995. I had the same test as clivealive.

    THe consultant Haematologist said that I had no Intrinsic factor at all,she said it was probably due to the removal of a large amount of my Bowel, so I have my B12 shots every 6 weeks.

    I am not sure when the Schilling test ceased,I think it was about 2003.

  • My doctor requested one in 2003, but the lab refused. They said they had not done one in 20 years.

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