Am shocked to read that NICE ( National Institute for Clinical Excellence ) states that neither B12 or folate should be tested

[wedgewood]

Unless a full blood count indicates Macrocytosis. But I thought that it’s a fact that you can have B12 deficiency / Pernicious Anaemia without having Macrocytosis I have a photo of this extract , but have failed to be able to put it on this post .

[Seth12345]

My understanding is that macrocytic anemia is the last stage of a B12 deficiency. I've read this on many articles and my hematologist also confirmed this. Most people never get to this stage that have a b12 deficiency.

[wedgewood in reply to Seth12345]

But it’s important to have treatment before the “last stage “ is reached , surely? .

Symptoms are often ignored as a result of this . I looked this up only because a previous poster has reported serious symptoms of b12 deficiency , but was sent on her / his way— ” Everything Normal “ — because a full blood count did not include B12 or folate tests and did not reveal Macrocytosis .

[Seth12345 in reply to wedgewood]

Yes, if you have any symptoms or have a definitive low serum level or high MMA, you should start replacement therapy even without the actual anemia.

[wedgewood in reply to Seth12345]

It’s terrible that this often does not happen .

[deniseinmilden]

Really???!! Whatever next?

Thank you for bringing this to our attention.

[CarlaEP]

Hi Wedgewood

Thanks for posting this ! Is this something new that NICE have published ?

[wedgewood]

No , it’s something that was published in August 2007 , but it’s still in place , and obviously many doctors follow these instructions .

[Gambit62 Administrator in reply to wedgewood]

unfortunately much of what is on NICE isn't joined up or cross-referenced and updated when other standards are revised.

[Nackapan]

Well explains alot. I wasnt tested for b12 or folate until the age the age of 57 .

Despite going for 50 + health check.

It's well documented stomach acid reduces age and post menopausal.

All they had to do it check it at that stage and take supplements surely. So obvious do easy. I know wont help PA but a start in a diagnosis I would have thought.

Not very NICE

Unbelievable really

[Ritchie1268]

That's really worrying Wedgewood but does explain how my Dr came about my diagnosis.

After trying me on three different types of antidepressants months apart from each other, I remember saying to him, they don't work. I'm not depressed as such & I'm not taking anymore due to what happened to me with the Opioids.

Following that conversation & after a full blood count he called me in wanting to discuss the results, & said:

"You have a B12 & Folate deficiency, Macrocytic Anemia & Pernicious Anemia"

It's really concerning that some get to the last stage before being diagnosed due to going off guidelines that are years out of date.

There's no wonder many are sadly made to feel like hypochondriacs before getting treatment.

[Nackapan in reply to Ritchie1268]

Happened to one of my daughters too. Found in hospital. After years of tests illness scans wrong diagnosis if fibromyalgia. Sent down the mental health route All ver distressing at 18. Ar its worse. She was 27 when like you had a severely low b12 under 59 I think . Akso macrocytic aneamia and very low folate and ferritin of 10.

I so wish everyone had a routine b12 on bloods as it's a baseline to know. Then compare if necessary.

I got do many members of my family to get it . Each time it was questioned why they wanted it.

My husbands was 170 and went up quickly on a very small daily dose of 10 mcg b12 . Jealous !

It's not even on the form to tick.

Bot only would my daughter bot need a wheelchair and trying to improve symptoms of POTs . I truly believe b12 was the underlying course. She has lost a valued teaching career. They have lost a good senior English teacher.

She is spreading the word as much as I am.

The amount of money on tests and mris

Pain management courses

The personal loss of health.

Its unbearable and negligent

Sorry ....hit a raw nerve.

Excuse pun with this tooth!!

[Ritchie1268 in reply to Nackapan]

Very sad Nackapan

[fbirder]

I cannot find that recommendation in their latest CKS (Clinical Knowledge Summary) which was revised in 2019 - cks.nice.org.uk/anaemia-b12...

[wedgewood]

Well I found it this morning and took a photo of it , and I will post when I find out how to do it .

[fbirder in reply to wedgewood]

Edit your original post and you should have an option to upload a photo.

[wedgewood in reply to fbirder]

Thanks fbirder , but I’ve just sent the photo with a fresh posting . I’m useless at this sort of thing!