Intrinsic Factor and Parietel cells been refused b12

My results came back negative (although they wouldn't let me have the ref ranges again) and so the GP surgery won't let me have b12 injections despite having two low readings. Is this right?

I have an appointment with a consultant Haematologist tomorrow at 1pm and any advice anyone can give me would be most appreciated.

Thanks in advance

Carly

8 Replies

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  • Hi Carly,

    Being negative for IF antibodies just classes you as IF neg PA.

    As I said in my previous posts go and have the active B12 test, for all details and why etc see:

    healthunlocked.com/pasoc/po...

    Kind regards,

    Marre.

  • Thanks Marre - I did call St Thomas but they said they still need a referral from GP and GP won't entertain it so I am hoping the haematologist can refer or do one for me tomorrow - seeing as he is private

  • Wishing you lots of good luck with the haematologist and that you will get the right tests soon! Marre.

  • This is awful but at least you have the haematology appointment so hopefully they are aware of bcsh guidelines and will start treatment. Good luck. I was negative for both antibodies but am on treatment (was started long before results)

  • How low was your B12? They just keep telling me I'm only just low 154ng red ranges 160ng-900ng!

    Although all the reading suggests that is low and then even if it were above 160ng there is still a grey zone.

    They just won't listen and won't read the articles

  • Mine was 182 and just below the local reference range too. I was also told not too low and didn't need treatment. I fought that using all the guidelines but it was really hard. I am quite sure my GP still disagrees but gave in to make me go away. I have not been back so don't know. Good luck tomorrow. Let us know how you get on. Starting B12 has been the best thing I ever did.

  • Hi,

    I'd take copies of the following with relevant passages circled. I'd also take someone with me who was willing to speak up on my behalf.

    ukneqas-haematinics.org.uk/...

    bcshguidelines.com/.../BCSH...

    ukneqas-haematinics.org.uk/...

    I don't know if you can contact him in time but the chair of the PAS is very helpful.

    Head office: 01656 769 717

    You could if you have time look at this site which has useful info.

    b12deficiency.info

  • Martyn Hooper in the PA Society's annual report states that you can still have PA even though the IF test is negative. In many other European countries and Japan, your serum result would be considered too low (below 550 pg/ml) and, together with the neurological symptoms you already have, would be treated without delay, as "there is a critical window of opportunity before permanent cognitive changes or injury result".

    I hope you have better luck with the haemologist. It might be worth pointing out the BCSH and UKNEQAS guidelines as well this latest BMJ research document or the summary (in case they will not read the complete document), to underline the seriousness of delaying treatment.

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

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

    "If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements. In irreversible cases, e.g. P.A., the treatment should be continued for life.

    Best wishes Carlygeorge

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