I went to my Doctor 8 years ago because of severe fatigue, she said she would do a full blood test and when results came back she informed me all normal your just a mum of two under 3s that’s what it’s like! Then 3 years ago I had full bloods and b12 which showed level was 84, when I enquired what my result was 8 years ago was told oh we didn’t take it then nothing suggested the need. Was giving loading dose and then every 3 months, I have since gone back to Dr and she has allowed it to be 8 weekly, but it’s not enough. I had a blood test last week (4 weeks after last injection) with result of 457. Also slightly low vit D 48, high mcv, raised % hypochromic cells, slightly low calcium. I’m thinking of doing another loading dose at home I have vitamine B12 GERDA 1000ug/4ml was just wondering if anyone could advise? Or if think there is something else I should do?
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woodyswife
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Hi woodyswife. My goodness, your B12 levels were very low! And a level of 457 four weeks after an injection is very low too!
Hope your GP is aware that using serum B12 levels to manage your deficiency following injections is meaningless. All the guidelines state that testing B12 levels following injections is not necessary...unless looking for low levels, in which case, more frequent injections are needed. (Your GP has inadvertently picked up on a low level, indicative of a need for more frequent injections (because, as I said, 457 is low for someone being treated with B12 injections - it's more usual to see levels of 1000 or much higher, when on injections).
Treatment should be based on having a frequency of injections to keep symptoms at bay...and your current treatment regime isn't.
In addition, if you have neurological symptoms (and I expect you do with a starting levels of 84), then you should be on the intensive regime of B12 injections for those with neurological symptoms. That is, the six loading doses (which you had) and then injections every other day until no further improvement (sometimes for many months). Many people need more frequent injections than the current NHS 'one-size-fits-all' regime on an ongoing basis - and can't get them - but that's another story 😉).
Your GP may not be aware of the intensive regime of treatment (many are not) so here's a link to the BNF prescribing guidelines. The intensive regime is about the third or fourth paragraph down - many GP's do not read that far so are unaware of this treatment regime 🤷♀️.
Suggest you show this to your GP and ask to be greeted in accordance with the BSH (British Society for Haematology) and BNF guidelines for those with neurotically symptoms (fail to treat according to this regime will certainly impede your recover and may result in potential irreversible neurological damage (not suggesting you have this but pointing it out to your GP may sharpen their mind and prompt them to do what they should have done)!
Some GP's worry about time and economic pressure related to frequent trips to the surgery for injections so it might be worth offering to be taught to self-inject so that you can relieve any perceived burden on their services.
Agree with fbirder...4mls is far too high a volume to inject IM...especially if you are injecting frequently (and it sounds like you will be). 1mg of B12 in 1ml of fluid is the standard dose...and a much more appropriate volume to be injecting in to a muscle.
So...think your GP needs to read the BNF guidelines. These state that for those without neurogical symptoms, injections can be prescribed every 8-12 weeks (recently updated from 12 weeks - her copy of the BNF May be out of date so she'll need to check that online for the updated guidelines).
And for those with neurological symptoms...loading doses and then every other day injections until no further improvement (the bit of the BNF that GP's never read far enough to spot).
She may say...but those guidelines are for those with Pernicious Anaemia...but that's a moot point! The treatment for Pernicious Anaemia is treatment for the B12 deficient it causes. Ergo...the treatment for PA is the treatment for B12 deficiency...from whatever cause (and there are many).
Thank you I will go and speak to her, there is a two week wait for appointments at the moment but will let you know how I get on, I’m really grateful for the time you’ve spent replying to me, thank you
I went yesterday and Dr said her hands are tied can’t do it more often than 8 weekly, that I could try oral supplements but in my case she doubts would help she also mentioned that some people buy online and do it themselves, I have asked her to get an opinion from a haematologist which she agreed to email yesterday. I have ordered the B12 from Germany as I’m feeling so drained and can’t go on feeling this way and will use it as soon as I hear back from GP if the haematologist goes with GP 8 weekly regime. Thanks again for your help.
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