Drs refusing to admit there’s any need for further B12 injections. So had my loading doses in October and I’m “wishing the reference ranges”
Had another telephone conversation with a different doctor and she was reading from the same script. “Take supplements until October then we’ll retest”
They haven’t even queried why my serum Inorganic phosphate is low (0.6) which even by their definition is Hypophosphatemia.
I’ve refused to take supplements as I feel it’s just masking the issue. Because when bloods are taken they will be high because I’m dosing myself up.
Or is this the wrong action to take?
Written by
Bumblebee02
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In my opinion it is the wrong action. Your GP's are totally ignorant about B12 and appear unwilling to be educated. If you do nothing you are allowing your B12 levels to drop even further and this could cause irreversible problems.
You know when you are on a hiding to nothing , don’t you? I gave up and started self-injecting . Your health comes first ,before any principles that we hold about trying to get the treatment to which we are entitled, in order to feel well , in spite of doctor’s ignorance about B12 . I got so battle— weary, , whilst my condition deteriorated. I just had to give in and self-inject . Think about it , unless you have plenty of energy left and can don the boxing -gloves ( Metaphorically speaking of course !)
You could try supplements first. According to some papers, they have seen success in raising the blood levels, though no one on here has reported feeling their symptoms improve. But of course, the people on here are those that haven’t found success with their prescribed treatments.
The problem is, as you say, that will raise your blood levels and it sounds as if, contrary to guidelines, that is what your doctors are going by.
I was at least getting three monthly injections but for me, they weren’t nearly enough and my health was deteriorating rapidly. Like so many people on here, I went down the path of supplementing and fighting the doctors before resorting to self injecting. I would prefer to have treated with the doctor’s support but with hindsight I would have started injecting much sooner.
I fought to get treatment for as long as I could. When I realised I was headed for permanent dementia and spinal cord damage, I started to treat myself....I already had dementia symptoms and spinal symptoms.
It took many weeks even months to start to see improvement .... I wished I'd started sooner.
Apologies if I've asked you before but have you written a letter to GP with your queries about treatment?
Perhaps you could mention in a letter that delayed treatment or under treatment of B12 deficiency may lead to damage to spinal cord (SACD) and include article below.
PAS article SACD (Sub acute combined degeneration of the spinal cord)
I find this incredible that to are not even receiving 2-3 monthly b12 injections as per NICE guidelines. Of course after loading doses your levels be high??
How helpful were the loading doses ?
I got worse before better but as nothingbrkse found to be causing symptoms I with s fight went back to every other day as per guidelines as every neurological symptoms.
A scary time.
I bought it to make sure I didn't go without .
I lije you would rather have it on my medical notes.
Have had 2 weekly b1e on prescription not without a fight or opposition at times .
Ask what else can be treated.
What reason do they give .
What evidence for their treatment from what medical papers.
Guide them towards all the guidelines sleepy bunny has provided on paper which has to be scanned on your notes.
Ask for a referral / second opinion ax still suffering.
NICE guidelines under review . Point this out.
Gps work by trial and error often.
Ask for a trial .
I hope it get sorted.
Meanwhile get treatment.
B12 testing is useless after loading doses which should just show high readings
Please don’t give up! Lots of good advice and insight above. Please keep in touch as it can be a lonely time when at odds with our primary care system! But this forum is amazing and the support and knowledge is far greater than any GP could offer.
I hope you feel empowered to make your decision as to what your path to recovery will look like. 🤗🤗🤗
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