should monthly b12 injections be automatically reduced to every 4 months after 6 months?

so i have had my 6 monthly B12 injections and now the doctor wants to change to 1 injection every 4 months. i am doubtful this will be enough as when i missed an injection and so left 6 weeks between them i already started feeling tired again!

should i just accept changing to 1 injection every 4 months or try to argue for carrying on with 1 a month?

when i asked my doctor to continue with 1 a month she said she was worried about over dosing me with B12. I explained that its water soluble and so can't be overdosed! but she says that i have to provide good medical evidence to continue with monthly b12 injections?!

anyone with advice would be appreciated or which documents to show her to provide its better to continue would be great.

thanks

5 Replies

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  • I would definitely push back - presume you are being treated with hydroxocobalamin. If you were feeling ill when you waited extra weeks 6 months is definitely not going to be right for you. As you have had shots then serum B12 levels are not going to tell you anything about what is going on at the cell level unless they come back low.

    Have you had a look through the pinned posts? There are materials there that might help

    Also have a look at the PAS website

    pernicious-anaemia-society....

    and may be point your doctor at the sub-site aimed at medics

    pernicious-anaemia-society....

    You will need to join to access all of the materials

  • Hi Robson,

    I can't remember which country you are in so apologies if this info is not relevant.

    In UK if you have B12 deficiency without neurological symptoms....

    standard UK treatment is 6 loading injections of b12 (hydroxycobalamin) over 2 weeks then an injection every 3 months.

    If you have B12 deficiency with neurological symptoms...

    B12 treatment is more intensive......loading injections every other day for as long as symptoms are improving then once symptoms have stabilised it's an injection every 2 months.

    Do you have neuro symptoms?

    If you have neuro symptoms and you're in the UK then I'm surprised that your doctor is suggesting once every 4 months rather than once every 2 months (or once every 3 months if you do not have neuro symptoms).

    Other countries may have a different pattern of treatment to the UK.

    Links to lists of b12 symptoms

    pernicious-anaemia-society.... click on Symptoms Checklist

    b12deficiency.info/signs-an...

    UK B12 treatment info

    1) See BSH Cobalamin and Folate guidelines, about a quarter through document

    b-s-h.org.uk/guidelines/

    Click on box that says "Diagnosis of B12 and Folate deficiency", should be on page 3 or put "cobalamin and folate guidelines" in search box.

    2) BNF (British National Formulary) Chapter 9 Section 1.2

    evidence.nhs.uk/formulary/b...

    "asked my doctor to continue with 1 a month she said she was worried about over dosing me with B12"

    Think there may be something useful in the summary of B12 documents fbirder compiled to do with this.

    Link to his summary in third pinned post on this forum (last link in list).

    There may be some useful info on PAS website. some info can only be accessed if you are a member of PAS.

    pernicious-anaemia-society....

    Thought this next link might have useful info

    b12deficiency.info/b12-writ...

    Info for GP/doctor

    1) There is a section on PAS website for medical professionals

    2) I gave my GP a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" plus a copy of the BSH Cobalamin and Folate Guidelines.

    I am not a medic just a person who has struggled to get a diagnosis.

  • Profile says Switzerland.

  • Start a logbook of all your symptoms especially the neurological ones and assess your own severity score on a daily basis.

    Provide a written list to your GP each visit and ask for it to be included in your file. Ask for suggestions from the GP of anything they would like you to monitor. Don't let them fob you off. Stay calm.

    They want evidence so start gathering it and provide it to them. Once you are on injections, further blood testing is no longer valid because they are skewed.

    Good luck. Happy new year.

  • If you look under 'pinned posts' and then go to 'Information about B12 from Stichting B12 Tekort and the B12 research institute' there's a link there to information about the safety of B12.

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