B12 and PA: So.....a friend of mine has... - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,984 posts

B12 and PA

yvonneu profile image
11 Replies

So.....a friend of mine has just told me she gets the B12 injections for the PA even though her B12 level is normal .

She does not live here in Leeds but is at a different practice to mine so why aren't MY doctors offering the same ? Grrrrr.

Please tell me it isn't the postcode lottery thing !

Written by
yvonneu profile image
yvonneu
To view profiles and participate in discussions please or .
Read more about...
11 Replies
yvonneu profile image
yvonneu

so I have to be proactive and push them to treat me ?

Foggyme profile image
FoggymeAdministrator

Hi Yvonneu. Don't think it's a postcode lottery. More like a lack of knowledge lottery. Unfortunately.

Anybody diagnosed with PA should start immediate treatment with B12 injections. If you have PA, B12 levels will always...inevitably...continue to drop until eventually the suffer becomes deficient, then severely deficient...

The point is your doctors should be offering the same...suggest you print the information in the links in your previous posts / replies and take the information along to share with your GP and request that they treat you in line with all the guidelines.

Pay particular attention to the two treatment regimes (BNF guidelines) - one for if you don't have neurological symptoms and a different more intensive regime if you do have neurological symptoms. It's important that you get the right one.

As you have a firm PA diagnosis, if this does not work and you are a member of the Pernicious Anaemia Society, then Martyn Hooper, the Society's Chair, may be able to intervene with your GP, on your behalf. He has had success getting treatment for people in your position.

Contact details are on the Pernicious Anaemia Society Website - Martyn prefers to be contacted by phone. If the answer phone kicks in, Martyn will always return calls - though it may take several days if he's busy or out of the office.

Or post again if you want more help with your GP.

Good luck 👍

clivealive profile image
clivealiveForum Support

Does not your doctor realize that P.A. and B12 injections are for life - your life yvonneu ?

yvonneu profile image
yvonneu in reply toclivealive

It would appear not.

Lisahelen profile image
Lisahelen

Im still fighting 18 months on!

yvonneu profile image
yvonneu in reply toLisahelen

where do you live ?

Lisahelen profile image
Lisahelen in reply toyvonneu

Medway towns, kent.

yvonneu profile image
yvonneu in reply toLisahelen

I'm in Leeds West Yorkshire

Frodo profile image
Frodo

I think there IS an element of postcode lottery. As I posted elsewhere, I spoke to a relative's GP recently about their B12 symptoms and that they were only just within the 'normal' range at the low end. Not only did the GP think being within the 'normal' range meant no need to treat, they informed me that their lab had just reduced the low end of the 'normal' range even further.

I couldn't understand how the lab could dictate medical diagnosis and treatment in this way and still can't, although someone explained to me it was all about statistics in an area??

How can you be ill and in need of treatment in one part of the country and not in another with the same symptoms and blood results? Or be ill and need treatment in one country and not in another? It doesn't seem like common sense to me.

jillc39 profile image
jillc39

I have a friend who gets b12 monthly even though she has not have b12 deficiency diagnosed! I creep along and am lucky to get an injection every 3 (now down to 2) months. Same practice!!!

Frodo profile image
Frodo

You may well be right, but the GP didn't understand that to be the case.

Not what you're looking for?

You may also like...

B12 and PA

Hi I was diagnosed with b12 deficiency 3 years ago but I do not have PA (as far as I know) - have I...
Alfabeta profile image

PA and Hashimoto

Hi everyone, I’ve been ill for 14 years. It started gradually with only fatigue and progressed to...
olga67 profile image

Measuring B12 levels after PA diagnosis

Hello, I was wondering if someone could please explain why it’s not helpful to measure B12 levels...
JadeRR profile image

New B12 Oral Treatment for PA

UPDATE: Had my appointment with the nurse for my B12 shot yesterday. She said I see you enquired...
Bumbles0404 profile image

B12 GP Prescribes two adult sisters with same PA Condition an

My GP gives my sister (35) her B12 injection every 6 weeks and I get mine every 12 weeks as my GP...
area16rep profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.