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 !
so I have to be proactive and push them to treat me ?
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 👍
Does not your doctor realize that P.A. and B12 injections are for life - your life yvonneu ?
It would appear not.
Im still fighting 18 months on!
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.
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!!!
You may well be right, but the GP didn't understand that to be the case.
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