Hi, I have been on b12 injections for about 5 years now after a good 10 years of previously feeling rubbish due to very low levels of b12.
I had the loading dose then went to 3 monthly shots, then about 2 years ago went to 2 monthly shots. I feel ok for the first 4 weeks and then gradually feel worse to weeks 6-8 when it's awful.
I have asked to increase my injections to monthly due to symptoms returning (tiredness, brain fog, memory problems, pins and needles etc) and because my b12 levels are now high have been refused. My GP also said to me that my problems could be physcosymatic and he would redo my bloods in 3 months and if they are still on the high end of the normal range will "reign it in" as I could get adverse affects from it.
After two days of being upset, then angry,now frustrated, what do I do next ?
I've been looking at having an active b12 test done privately as well as intrinsic factor and some other things. (I've put the photo of what's in the test below)
It's quite expensive though and I wondered if anyone else has had it done ? Is it worth it ? Will the fact I'm on b12 injection make the results inaccurate ?
Basically what do to next ?
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B12fog
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There is no point in further testing at this point. - certainly not in the test offered above which is more geared to investigating a B12 absorption problem rather than investigating a B12 metabolisation problem after receiving B12 shots - though possible that some of the tests might be helpful, eg MMA in establishing if the reason that you start feeling ill at 4 weeks is because this is the point at which the amounts of B12 getting into your cells start to drop.
Your GP is wrong to think that having high levels of B12 after loading shots means that you are okay and unfortunately one of the many who jumps to the conclusion that it is psychosomatic - when it probably isn't.
Unfortunately, the licence for hydroxocobalamin in the UK only covers treatment every 2 months - seems to be more to do with the vagaries of the licencing process rather than any solid scientific evidence - general protocol in Germany is monthly - However, the licencing arrangements mean most GPs are very reluctant to look at more frequent ... and the NHS can be bureaucratic and heavy handed against those few GPs that are prepared to go for more frequent injections.
You could try one more go at your GP - eg pointing them at the section of the PAS website that is geared at providing information on treatment of PA (the most common cause of B12 absorption problems) for medical professionals - which might educate them a bit about the inadequacy of the treatment they are currently using and the severe limitations of using serum B12 test as any sort of a guide after loading shots
It does sound as if your next option is to look at either supplementing - high dose oral/sublingua, nasal and even skin patch options are available and are vitamin supplements that don't require prescription. Failing this you can probably source injectable B12 on line - use a reputable pharmacy based in a country that doesn't treat injectable B12 as prescription only (eg Germany).
I can't speak for the efficacy of getting tested whilst on injections but the cost feels high; although that is roughly what BUPA got charged when I had similar tests done. It mentions somewhere in the NICE guidelines that active B12 testing costs the NHS around £12, that does of course exclude the other tests and time of the nurse to obtain blood plus ancillary items.
If you are a member of the PAS, they may be able to help getting more frequent injections to treat the neurological symptoms of memory problems, pins and needles, etc. as per BNF, 'every other day until no further improvement', as there is a short window in which o prevent permanent damage.
I don't think you've anything to lose by writing to your surgery in advance and booking another appointment, taking someone close for extra support and this link may help with that:
Re. Blood levels after injections, you could quote the above latest BMJ research document, which is supported by many research papers and is peer reviewed. It states at the bottom of page 4 that, once b12 injections have begun, blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....
"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."
Cmim/BMJ document. " Summary:
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
**It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Blood levels are not a meaningful test of B12 adequacy. Persistence of symptoms should determine dose. My wife has been through exactly the same circumstances as you. (See my post elsewhere on this site "Problems With The Medical Profession"). We are currently in dispute over the adequacy of her treatment. B12 is on-toxic. If you need a shot every month - as my wife does - that is what you need. Serum levels can be high for reasons unconnected with B12 sufficiency (like the inability of the liver to store it).
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