B12 injections after the loading dose

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Hi

I have recently been confirmed defficient in b12. Doc prescribed 6 injections then 3 monthly. Also folic acid for a year then to be retested.

Within a few days of last injections I felt brilliant, better than I had for so long, more energy, less sleeping, no aching joints, headache, mind fog, dissiness etc. That lasted 10 days now I feel back to square one again 😪. I can't believe the difference again. I feel so down as I really thought i had turned the corner and was so looking forward to living again. Any advice on what I CV should do ? Really tempted to by injections but a bit scared..I'm 47 female from UK. Going through early menopause and also depression for years so on medication. Been feeling ill for so long but b12 never checked before. I thought I was going mad and know people doubted me but for a week or so people commented on how different I looked and acted..just want to feel good again. Please any help would be appreciated. Thanks

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  • Posted

    You doctor appears to be treating you exactly in accordance with the N.I.C.E. guidelines on the treatment of B12/Folate deficiency. However "loading doses" should continue "until there is no further improvement" and it may be you need more.

    However, It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

    I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

    A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

    Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

    Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines.

    If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

    I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

    I'm not a medically trained person but I've had P.A. (a form of B12 deficiency) for over 45 years and I wish you well.

    ?

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    • Posted

      Thank you Clive, much appreciated. Woke this morning and so dizzy, worse then ever. I think because I felt so good after last loading dose I was shocked with how I'm feeling now.

      I will do as you suggested, not looking forward to it but will hopefully get doctor to understand.

      If not I may have to go down self medication route as a last option.

      Thanks again

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    • Posted

      Hopefully your doctor will be amenable to re-start your loading doses "until there is no further improvement"

      The British Society for Haematology guidelines on treating B12 deficiency say "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".  Whilst we are not disputing any serum B12 test result at this time the thrust of the guideline is the highlighted bit.

      List your strong clinical features and present them to your doctor.

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  • Posted

    Maria it's horrible to feel this way I know what your going through I feel my GP doesn't help xxx

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    • Posted

      My doctor is currently off Sick, seen a different GP and no joy so I have decided to self administrator. Not happy having to do this but felt so well for a week or so that I can't go back to how I was. I feel so sorry for everyone who had this condition. Horrible to have to beg to be treated just to feel good.. waiting for injections to arrive. Good luck x

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  • Posted

    My injections have arrived and I have now taken two spaced over two days. I hate the act of actually injecting myself but need to get used to it ! Really hope to see a improvement soon. Hope you are all doing well
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    • Posted

      Thank you, I understand it may take a while but at least there is hope now. I just hate the actual injecting myself, I am not a chicken but dread it🤔. I will get there. I will continue to use forum as found it useful and hopefully I may be off some help. Thanks

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