Had my 5th loading dose today and told they now need to think of stopping

[MzChapperz]

Had my 5th loading dose today and was told that the nurse would have to speak with the GP about more because too many can be just as dangerous. I argued against this but she continued to say that it was!

I still no better, I sleep all the time. I. Thoroughly fed up of feeling like this all the time, I can't plan anything.

I was diagnosed in April, surely I would be fling better by now?

[Gambit62 Administrator]

unfortunately, although many do feel much better quite quickly it takes a while for others - I didn't actually notice any difference until my 3rd loading shot - so nine months from where you are now - and then it didn't actually last very long.

Your nurse is, as you know, completely wrong. You could try printing off this article from the pinned posts and giving it to her/leaving it for her the next time you are at the surgery

stichtingb12tekort.nl/weten...

Really hope that you manage to talk to a GP at the practice who knows something or is prepared to listen.

[Foggyme Administrator]

Hi MzChapperz. Your nurse is talking nonsense! And being negligent. There is no such thing as too much B12...and it's certainly not dangerous (see the information in the third pinned post).

Tell your nurse to read her copy of the British National Formulary (BNF). It's on her desk. This clearly details the treatment for B12 deficiency, both the first and the second paragraphs.

For B12 to be effective it is not enough to simply give the loading doses and then stop (as you know). The loading doses should be followed up with regular B12 injections (the timing is dictated by whether or not you have neurological symptoms - but I think you know this as well).

If I was I'd go and see her, make her get the book out, and insist she reads it while you're there.

This is basic stuff (or should be) for a nurse!

Sorry it's such a struggle but do please try and find the determination to keep at them.

Good luck x

[Sleepybunny]

"was told that the nurse would have to speak with the GP about more because too many can be just as dangerous"

Might be worth talking to PAS about this if you are a member.

pernicious-anaemia-society....

PAS tel no 01656 769 717

fbirder has a summary of b12 documents that might be helpful.Link to summary in third pinned post or on his profile page.

page 8 and page 20 in the "BCSh Cobalamin and Folate guideliens" I found sueful to read and pass on to GPs. page 8 is about UK b12 treatment. page 29 is a diagnosis flowchart for B12 deficiency.

BNF chapter 9 section 1.2 mentions 6 loading injections not 5 I think. if a person has B12 deficiency with neurological symptoms they should get loading injections every 2days for as long as symptoms continue to get better, then injections every 2 months.

I think it's possible that your surgery is using local area NHS b12 guidelines rather than the "BCSH Cobalamin and Folate Guidelines"

[Maud04]

Good afternoon MzChapperz,

I printed off the info the good people above are telling you about and the GP finally agreed to treat me.

You have to play with them using their own guidance and rules then they kinda have to agree with you.

Hope it helps and all ends well for you too

Kind Regards

Maud04