Newly diagnose PA: Hi my new GP has... - Pernicious Anaemi...

Pernicious Anaemia Society

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Newly diagnose PA

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Hi my new GP has diagnosed me with PA but another GP at practice stated I didn't have as I have immature red blood cells. He also stated breathlessness was in no way linked to B12 problems. I have an injection every 8 weeks the benefits last approx. 13 days then symptoms kick in (been told only licensed for minimum 8 week inj) . A senior GP at my practice states no point topping up B12 and not to focus on injections only; this from a GP who stated I had nothing medically wrong with me to cause fatigue.

It has taken 8 years to get to this stage my concerns are that I have not had an endoscopy despite having ibs symptoms nor had my heart checked as enlarged heart/stroke is also a PA risk. I've taken Lansoprazole for 8 years and blame this. I have asked to be referred to a Haematologist as getting no where with GP my Haemaglobin, iron and vit D3 are all below normal. Really would like B12 injections fortnightly as they do improve my symptoms and would like to feel normal again. No one understands and I am made to feel that I'm just lazy.

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Poppet11 profile image
Poppet11

I'd go back and point them in the direction of the article on Vitamin b12 that was in the BMJ 4th September.

... and re-reading this: that first line is quite confusing. The GP stating you didn't have because you had immature red blood cells. I wonder what he means by that? Reticulocyte count low. I could understand 'new red blood cells' but not ruling out PA because you have 'immature red blood cells'

Anyway - don't take any nonsense. Print off the part of the BMJ article that you can access, take it back to them, slap it in front of them and ask for a copy of it to be put on your records.

Hi,

You really should go and see a haematologist, if possible go and see another GP, or best pay privately for a haematologist's appointment. It will be something around £100,-, but you get time, will be checked all over, and listened to. Referrals if necessary can be made etc. Its one of the best things I did. I just looked up private haematologist in my area and rung up to ask if I could make an appointment and ask about costs etc. It just is not helpful to only add more B12 if you are now def in iron etc.

I hope this helps,

Kind regards,

Marre.

MCMC profile image
MCMC

I know someone who stopped absorbing iron, b12, vitamin d because of Omeprazole, similar to Lansoprezole. They are doing fine now after stopping use of Omeprazole and being put on vid d, iron supplements and b12 injections, but on injections for life.

Gambit62 profile image
Gambit62Administrator

Sorry to hear about the lack of coherent information and even mis-information you are receiving from your GP but not surprised. It would appear that there are still significant numbers of GPs out there who hear 'pernicious anaemia' and assume that means you should be showing abnormalities in your blood-cells. The reality is that pernicious anaemia is a particular auto-immune response that causes B12 deficiency and that anaemia is one of the consequences of not having enough B12. Once upon a time it was probably one of the signs that showed up first but these days we tend to have so much supplementary B9 (folate) in our diets that that is no longer the case and it is much more likely that you will show psychological, neurological symptoms first but GPs don't seem to be aware of this. It is one of the points made quite clearly in one of the responses to the BMJ article that poppet refers to

bmj.com/content/349/bmj.g5226

response I am referring to is by K Thompson and dated 15th September.

hiteshhp profile image
hiteshhp

Sorry to hear that

As everyone knows, once you have proved PA through antibody tests, it remains there for life.

Please gather some more info and approach GP again or change the GP.

My GP just told me that they have got training for new BMJ article and they should have more knowledge now.

If nothing works, self treat it.

Join FB support group, facebook.com/groups/PAB12DS...

Poppet11 profile image
Poppet11 in reply tohiteshhp

Hang on.... rewind.

What was that about training for new BMJ article???????

Ooooh, ooooh, oooohhhhhhh

wedgewood profile image
wedgewood

I also had immature red blood cells when I was diagnosed with P.A. Apparently deficiency of B12 causes this. The cells divide when they are mature and become smaller and harder, thus able to pass through the narrowest gaps which they have to do to supply you with oxygen. Large immature cells need B12 to mature. Lack of B12 prevents the cells from maturing.

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