Nice Guidelines for B12 deficiency New 2024

[Delilahmy]

just in case people haven’t seen the new Nice Guidelines

nice.org.uk/guidance/ng239?...

[wedgewood]

Thank you very much Delilahmy . I’ve printed it out and sent it to my old surgery which was totally ignorant about PA / B12 deficiency. I doubt that it will be read by the arrogant b******s . But one lives in hope .

[Delilahmy in reply to wedgewood]

Yes Wedgwood let’s hope the ABs read digest and implement the guidelines. Fingers and everything crossed - but at least there’s hope if they’ve had them put under their nose. I will do the same at my surgery - great idea

Hope your well

[Cherylclaire Forum Support]

Still wondering if there is anyone out there, anyone at all, who has been offered a CobaSorb test. No-one here has ever mentioned it to my knowledge.

[Dancer57 in reply to Cherylclaire]

In my area there isn't even an option on the surgery computer to request an Active B12 test at the moment, so I am not holding my breath on anything else which will make 3 years of consultation and changing the guidelines a complete waste of time and money.

[Cherylclaire Forum Support in reply to Dancer57]

Again, most of the tests that are difficult/ impossible to get via primary care seem to be easily available at secondary care level, particularly haematology unsurprisingly, but also gastroenterology. It's getting there, though, isn't it ?

I have had many scans and tests spanning seven years including six MMA tests, three (negative) IFab tests, homocysteine, active B12, even a DNA test - but never even heard mention of CobaSorb.

[Dancer57 in reply to Cherylclaire]

Wow you have been lucky, in Primary Care they look at you with a blank expression. So far I have had to pay for my own tests and even then the GP doesn't take much notice. Anyway, I will be testing these new guidelines out on my new GP soon!

[Cherylclaire Forum Support in reply to Dancer57]

I was lucky - I had a GP who noticed that I was continuing to deteriorate after the loading dose, after the 3-month regime and knew to test MMA.

Having a raised MMA despite the B12 gave me a diagnosis of functional B12 deficiency, 2 injections a week for six months and then years of tests, scans and consultants.

This not because my GP was a B12 deficiency expert, but that she was an experienced observant GP who knew what ill looked like. She had had one other patient with a functional B12 deficiency diagnosis arrived at 10 years previously - and remembered what to do.

Find one that cares, looks and listens.

[Delilahmy in reply to Cherylclaire]

Fabulous that you got an investigative GP …. And the will to look …. This is what we need x