Hi all. I wonder if I could get some advice please.
I was diagnosed with Pernicious Anaemia over 12 years ago after ending up in hospital for the umpteenth time with severe pains & nausea in my abdomen. They diagnosed me with IBS & PA & sent me on my way with some Buscopan & a letter for my GP to start B12 treatment.
I was given the initial loading dose & subsequent doses until the every 3 month period. Over the years the frequency has had to be increased till I was having it every 5 weeks (even though I needed more regularly) for some reason they weren’t happy to administer it any more frequently.
I have recently had to change to a new practice & on reviewing my medications they have decided I can only have it every 8 weeks as they claim they are not licensed to administer it any more frequently, I have searched everywhere online & can’t actually find anything that backs this statement up. Does anyone know if this is in fact true or is it just that they’ve fallen on a ball park number that GP’s are comfortable with & agree upon even though there is no actual supporting evidence to say that having B12 more frequently is dangerous or expensive.
This new GP wants me to have blood tests done even though I explained that it clearly states in the NICE guidelines that once someone is having regular doses of B12 blood results are no longer reliable. When I asked him what he would expect my B12 levels to be based upon the frequency of my injections he said he would expect them to be well over 2000, when I asked him to look at what they were (2 weeks after injection) he was “amazed” that they were only at 700, even queried if I’d been actually having the injections as frequently as I’d ‘claimed’.
Can anyone clarify for me if I’m reading things correctly but am I right in thinking that if you’re having neuropathy issues, such as numbness, tingling & memory loss, that you should be given the B12 as frequent as needed until the symptoms are no longer an issue?
Has anyone had any success getting their GP to administer their injections as needed & not only when they think it’s needed?
Any advice on how to deal with the GP greatly appreciated
Tanya x
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8lackBeauty
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The vagaries of the licencing system mean that hydroxocobalamin is only licensed for frequency of 8 weeks or more. However, that doesn't mean that it is dangerous to administer it more frequently than that - just that it hasn't been worth any manufacturers/suppliers asking for it to be licensed for use more frequently than that. When hydroxocobalamin was first introduced it had a frequency of 4 weeks for injections but this seems to have been changed to 8 weeks (based on the average retention period for hydroxocobalamin being 2x as long as cyanocobalamin) and then 12 weeks for those without neurological involvement (for which there appears to be no science based evidence at all) with 8 weeks retained for people with neurological involvement.
The early studies on retention of injected B12 showed that the time taken for serum levels to fall back into the normal range was, on average, 4 weeks with cyanocobolamin and 8 weeks for hydroxocobalamin. However, they also showed considerable variation in individuals (with some people having significantly raised B12 levels well over a year after injection). Unfortunately these studies only used serum B12 levels and didn't monitor reported symptoms.
The UK protocol for loading doses for B12 is every other day until symptoms improve and then 8 weekly - a bit different from maintenance as needed.
GPs are allowed to prescribe 'off-licence' ie frequency greater than 8 weeks - if they feel it is in the interest of their patients. The fact that your levels have fallen to 700 after 2 weeks does suggest that you need B12 more frequently.
I would suggest you point your GP at the area of the PAS website specifically aimed at helping medical professionals to improve the diagnosis and treatment of PA
They may also be interested in looking at early studies on retention of B12 to gain an understanding of just how off using the average retention periods can be if applied to specific individuals.
The guidelines say every other day until there is no further improvement of neurological symptoms, then 2 monthly. However it's very difficult to get a GP to prescribe every other day or 3 times a week injections beyond the first few weeks. They usually say any perceived improvements after a few months are mostly psychosomatic, you try to persuade them otherwise and it can be like hitting your head against a brick wall!
You may need to write a letter detailing your symptoms and citing the guidelines, you will find help and information on how to to this.
One GP agreed that the long nerves to the feet can take up to 2 years but once my levels were high that I wouldn't need injections more regularly than 2 monthly and some long standing neurological damage would probably never get any better. I am continuing the battle but self injecting with my own supplies as often as I need to, I have continued to very slightly improve but still have some neurological symptoms.
How many loading injections did you have before the 3 monthly injections started?
Some UK forum members resort to self treatment if unable to get enough B12 from NHS.
Do you have any neurological symptoms?
BNF (British National Formulary) link below suggests following treatment pattern for those with neuro symptoms...
A B12 loading injection every other day for as long as symptoms continue to improve then a maintenance B12 injection every 2 months.
There is no set limit as to how long the every other day loading injections can continue for those with neuro symptoms, could be weeks even months. If symptom improvement continues then so should the every other day injections.
For those WITHOUT neuro symptoms, BNF treatment pattern is
6 B12 loading injections over 2 weeks followed by a maintenance B12 injection every 2 to 3 months.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.
It's worth knowing what you are up against locally as some UK local guidelines on b12 deficiency differ from BSH, BNF and NICE CKS guidance.
Your GP may be constrained in what treatment he can offer due to local guidelines.
Try a search of forum posts with term "Local guidelines" as some have been posted on the forum or try an internet search or submit a FOI request to your CCG/Health Board asking for a copy of B12 deficiency guidelines for that area.
Link below discusses treatment/diagnosis of B12 deficiency in an area of UK that has a poor reputation on this forum for how B12 deficiency is dealt with.
Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
Thank you all for your support & help. I have now joined the PAS & have emailed them to see if they can offer me any support or documentation that I can bring to my GP in order to ensure I can get my injections when my body needs them & not when they feel is appropriate. I will keep you all updated.
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B12 Frequency Research
B12 deficiency - more frequent injections
Side effects of B12 injections 
B12 injections
B12 Injections for PA
