Scientific paper needed re ignoring high serum B12 levels following loading doses

My daughter went back to her Gp as she relapsed back to being totally exhausted and unwell and mood swings once the loading doses were complete. We are not in the Uk and the protocol here is different, 7 daily injections, then once a week for a month and then monthly. Helpful advice on here suggested she have her folic acid and ferretin levels checked, which the Gp did and it seems she also checked serum B12 levels. She has just telephoned to say that the B12 levels are way too high at 2000 and that we need to stop the weekly injections straight away and wait at least a month before continuing. I tried to explain that the B12 levels are meant to be high at this stage of treatment, but it was difficult to sound convincing. Please can someone post a scientific link- medical research paper, health authority guidelines, or something - anything "medically authori

tative" that cannot be dismissed.

And now I find myself questioning if because the levels are so high, mean that she should go on to monthly now ? Not because I think the high levels are bad, I know that B12 cannot be overdosed - but because maybe she doesn't need such frequent dosing anymore to maintain her B12 ?

5 Replies

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  • We must be four or five hours ahead of you here in the UK, past most people's bedtime. The experts will, I expect, be here tomorrow for you. In the meantime you could read, and perhaps take a copy of it to your GP, 'information about B12 deficiency from Stiching B12 Tekort and the B12 Research Institute' you will find it on the right side of this page. I gave a copy of it to a locum GP today who was worrying about too many injections.

  • Thank you ! Yes, the Stiching B12 Tekort and B12 Research Insitute info is just the ticket. My daughter is now self-injecting at home on Gp's prescription, and we have been given 20 ampules. So we can continue with the last two weekly injections as planned, and longer if needed - and the Gp would actually be none the wiser. However I would much rather she be correctly informed and we work together on the same page.

    We are 5 hours behind the UK here, so yes, everyone in their beds now ... except for you ! You are up very late !

  • Yes it is good if you can keep your GP on your side. Hopefully they will be open to the information you are taking in.

    Good luck. I should change my name to 'The Owl' !

  • This latest BMJ research document could help (see bottom of page 4 under ''How is Response to treatment assessed' :

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

    "Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

    Good luck Lovesluna - the above is peer reviewed and is backed with references to research papers.

  • Hi LovesLuna. Here's a link to more information that might help (Stichting B12 Tekort and the B12 Research Institute). Also provides links to other relevant research papers:

    stichtingb12tekort.nl/weten...

    Good luck to you both 👍

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