NHS and Pernicious Anaemia

[helvella]

I am probably way behind things here, but NHS Choices appear to have abandoned the term Pernicious Anaemia!

nhs.uk/conditions/#P

Vitamin B12 or folate deficiency anaemia

nhs.uk/conditions/vitamin-b...

I wouldn't altogether be unhappy at changing the formal name - the "anaemia" having such widespread misinterpretation- but not listing its traditional name just makes it difficult to find.

[deniseinmilden]

Thank you for this!

It could result in more people like me being able to get treatment though and I welcome the change.

Hopefully in time it will increase the awareness of the importance of vitamins (and minerals).

[Gambit62 Administrator]

Doubt it will have any positive effect as well - as the second link still confuses B12 and folate deficiency with anaemia

AMAG (auto-immune metaplastic atrophic gastritis) which is, I understand the name preferred by the founder of the PAS isn't mentioned as a condition.

It is a specific cause of B12 deficiency but far from the only cause of B12 deficiency so people are still going to be faced with the confusion with B12 deficiency meaning anaemia with no real recognition that different causes of B12 deficiency have different potential consequences that require monitoring/treatment beyond the B12 deficiency itself.

[helvella in reply to Gambit62]

I too found the language and whole description very questionable. Confusing and potentially misleading.

(They've also got rid of hypothyroidism as a top level index entry - and only have underactive thyroid.)

[Gambit62 Administrator in reply to helvella]

think real problem is that they are still classing folate and B12 deficiencies under blood disorders. They aren't.

[yvonneu in reply to Gambit62]

Why the need to change it ?

[Alfabeta in reply to Gambit62]

Hi

My b12 deficiency was caused by

1 Diet - I’m a vegetarian who knew nothing about b12 deficiency

2 My doctor prescribing omaprezole on recurring six monthly prescriptions with no checks in over six years.

As far as 1 is concerned, I should have read more widely about my diet - self inflicted!

As far as 2 is concerned, doctors should not dole out quick fixes to complex problems - there’s a whole litany of medical crises caused by this behaviour- thalidomide, Prozac etc.

Chris

[clivealive Forum Support]

Is it true that P.A. "is the most common cause of vitamin B12 deficiency in the UK"

[helvella in reply to clivealive]

You are right to ask. Seems unlikely to me.

I'd like to think that the PAS has gone through that page word by word. And made representations on everything unsatisfactory.

[helvella in reply to helvella]

It also seems written such that someone who doesn't already know could easily think that taking B12 OR folate would resolve the issue. Even to the point of not really mattering which is taken. As is often discussed here, it is so very necessary to address both issues, if they co-exist.

[Gambit62 Administrator in reply to clivealive]

research seems to indicate that PA really is the most common cause of B12 deficiency in countries like the UK, but it is so difficult to diagnose as a precise cause these days that it is difficult to be sure.

Although the PAS does try to get involved with guidelines and lobbies it is very difficult to have a real say and confused ramblings like this do get through - and I'm not sure there is a clear timetable for review. It did get a rather lukewarm reception from members of the forum when it was revised 2 years ago

[Foggyme Administrator]

Don’t know if they have helvella , but I'll find out tomorrow...

Agree wholeheartedly with your and Gambit62 's comments. And I'm wondering who no earth writes these pages.

Seems PA is to become a 'hidden disease' again, closely followed by hypothyroidism...and goodness knows what else.

[PearlH]

There are a number of problems that can lead to a vitamin B12 or folate deficiency, including:

- pernicious anaemia – where your immune system attacks healthy cells in your stomach, preventing your body from absorbing vitamin B12 from the food you eat; this is the most common cause of vitamin B12 deficiency in the UK

(CHECK - anti-bodies PC)

- a lack of these vitamins in your diet – this is uncommon, but can occur if you have a vegan diet, follow a fad diet or have a generally poor diet for a long time

(CHECK- life time veggie)

- medication – certain medications, including anticonvulsants and proton pump inhibitors (PPIs), can affect how much of these vitamins your body absorbs (CHECK- 4 years PPI)

Check me in for all 3 causes! And still my GI specialist think 10 injections ought to be sufficient to treat my severe deficiency?! I'm battling huge walls in our health system like all of U are...Docs still think it is 'just a vitamin'. I'm also homozygous MTHFR C677T and docs say, no link to life-time high folic acid in Ur blood serum. Medical world doesn't understand methylation and metabolism of vits and minerals...they are being educated how to treat symptoms with synthetic/chemical drugs and not how to get to the root of the symptoms :/

[Cali25]

Thanks for posting this, no change there then even less understanding!

Just a way of sidelining to cut costs in my opinion. I gave up with the GP many months ago, get my B12 shot every 8weeks and keep quite about the SI I do every week + taking folate, iron and vit D. 12 months on I feel like my old self and well again! and would encourage anyone to do the same if they are not having any luck with the GP.

Please note I do not have any medical training and good luck.