Need extra guidelines to arm myself with for next appointment , GP has been great, but now becoming a jobsworth.😣 ...Help!!!!!!!

[Frances55]

Hi everyone ☺.... My doctor has been absolutely fantastic regarding my PA... 3 months now si every other day since... Went to see him on Thursday and he asked how I was getting on... I was truthful and told him some of my neurological symptoms had lessoned.. But obviously I felt I still had symptoms so I wanted to keep on the si every other day until no further improvement... He said the recommendations from the haematologist states that if there was improvement, then the dose should be reduced to monthly... I tried to explain that it's until no further improvement, so he started saying he had a duty regarding safety... And what did I mean by neurological involvement... Is there sites I can get this information from.. That way I can mark off what's getting better and what I'm still suffering.. Also something I can print off regarding the safety of B12.. I already gave him the Nice guidelines when I was diagnosed 3 months ago.. But he seems to think they're just general... Really need to arm myself with everything I can... Cheers everyone 😊....

[Gambit62 Administrator]

Have you looked through the BCSH guidelines which are much more detailed than NICE

onlinelibrary.wiley.com/doi...

unfortunately the site is down this weekend for maintenance so you can't actually access them at the moment - which means I can't check on what is on there in relation to safety of B12 - but it probably isn't that much.

Your GP can access through the BNF but think the link there is to the above so will be down until Monday by the look of it.

EFSA (European Food Standards Agency) hasn't set an upper limit on the grounds of safety of B12

efsa.europa.eu/sites/defaul...

p48 in the document (which is different from the page of the pdf file)

there will have been reviews since this document was written but they haven't changed the recommendations - and can be found on the site but may need a bit of searching

This list includes some categorisation into neurological symptoms - however the BCSH guidelines don't specify that the improvement is directly related to neurological symptoms though that might be the contextual implication, if I remember correctly.

This article may be useful - and could throw up some more references though haven't looked in detail at it recently

bloodjournal.org/content/bl...

[Gambit62 Administrator in reply to Gambit62]

and there is also this are of the PAS website

pernicious-anaemia-society....

[Frances55 in reply to Gambit62]

Thanks Gambit ☺... Just on my way out so I'll give it a look at as soon as I get back.... ☺