Could anyone help me with this please?

Hi,

I have just had 4 weeks of loading injections ( 3 a week) and my severe near symptoms have been improving. My GP has now refused to continue, even though she agreed NICE say every other day until symptoms stop improving. I am now told that she has spoken to a consultant haematologist who said I should have a B12 blood test (my folate is normal) and if B12 in normal range, then she should go to every 8 weeks. I am happy to buy/inject myself but want to work with my GP if possible. I heard that once near symptoms are severe (mine were, I was admitted to A&E after GP called an ambulance before Xmas suspecting a stroke or brain bleed) that LD injections should continue for up to two years.

Does anyone have any reputable research papers on this please?

Thank you.

4 Replies

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  • How about posting your earlier test results. I'm sure you will get advice here then. Testing after injections is wrong but done so often.

  • "I am now told that she has spoken to a consultant haematologist who said I should have a B12 blood test "

    Pretty sure that the BSH Cobalamin and Folate guidelines mention that testing b12 after treatment has started is irrelevant. Perhaps GP hasn't read that bit?

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

    If you look at third pinned post on forum and find fbirder 's summary of b12 documents, he has included quotes about the isuue of not retesting B12 once treatment starts.

  • What matters with recovering from B12 deficiency isn't the amounts in your blood its the symptoms - so really does sound as if the haematologist is just thinking that it is a blood disorder and failing to recognise that B12 is used by cells for a lot more than just producing healthy red blood cells.

    BCSH guidelines are not to retest after treatment starts unless it is suspected that there is non-compliance with the treatment regime. The results will mean nothing at this point unless they come back really low - which is extremely unlikely.

    The guidelines for treatment with neurological symptoms mention reviewing at 3 weeks - as that is a good way of monitoring improvement in symptoms.

    I think your best bet in terms of pushing back on the haematologist would be to point out that it is quite possible to be deficient at the cell level with high levels in bloods - there are a lot of papers on the existence of 'functional deficiency'. There are also plenty of papers on how flawed the serum B12 test is anyway as a guide to what is going on.

    These articles may help, along with the other items in the pinned posts mentioned by Sleepybunny below

    ndcn.ox.ac.uk/publications/...

    ncbi.nlm.nih.gov/pubmed/832...

  • Thank you, one and all. 🙋🏻☺💐🤧🌈🤸🏿‍♂️👩🏽‍⚕️

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