Hi,
PAS news item published today 25th which discusses changes BSH have made to their advice to doctors during pandemic.
pernicious-anaemia-society....
BSH ( British Society of Haematologists)
I also noted that BSH are considering updating their guidelines published in 2014.
BSH Cobalamin and Folate Guidelines published 2014
So if I've read it right if you di not have a PA diagnosis or have had surgery you are still at the mercy of what Gp you have?
I've not got a PA diagnosis
Have been on injections for 18months
Was told for life.
Have been told its dietry but clearly it issnt.
I might even fall I to the group of post menopausal women who simply have an absorption problem.???
So whilst this is good news for many it could be bad many??
the guidance distinguishes between non-dietary deficiency and dietary deficiency. Non-dietary deficiency would not require a diagnosis of PA and a number of conditions are listed in the guidance quoted.
Yes I've reread it thank you.
Just wish in their short list it could have included absorbtion problems which covers many many people.
I know some Gps will read the update and dispute whether dietry or not.
As in my case tablets do nothing .
But hard to prove as on injections that would obviously give a high result if a blood test done .
I was told it was dietry when I asked outright at last consultation.
But yes a vast improvement from the last advise put out.
It is only dietary is you were not eating meat/fish/egg/dairy in the period before diagnosis. If you were, it is by definition non-dietary.
Yes I understand that thank you.
I ate meat fish everything actually,before reading of 106 serum b12. And severe symptoms.
It was my GP saying it is dietary.??
So fit criteria of non dietary by definition of course.
Gp is treating me with Injections at present.
Was put on tablets a while back to get a bigger gap between I jections it didnt work.
It s on my notes dietary b12 deficiency.
Will have to get her to amend that. Lots of Gps in my practice disagree on b12 treatment.
Real battle and reliance on neurologists backing.
Hi Nackapan,
I understand the concerns you expressed. I do not have a confirmed diagnosis of PA.
My B12 deficiency symptoms were not diet related as I was eating meat, dairy, eggs, fish.
I think it's good to have a copy of typical weekly diet, food and drinks to show or send to GP if people think GP is likely to say their B12 deficiency is diet related.
Correcting mistakes in medical records (UK)
pulsetoday.co.uk/news/polit...
gponline.com/amending-medic...
ico.org.uk/your-data-matter...
Thank you
I'm astonished my Gp said this even after I trialled tablets under her instruction.
Also at the very beginning after loading doses until I managed to get Injections back.
I will write down a week of foods eaten.
I have a very good diet and dont omit
much at all
That's why I didnt dream I was b12 deficient .
I've read how post menopausal women especially stop producing enough stomach acid and hormone drops inhibit absorbtion of vital nutrients from foods.
Also stress eats b12
It is so gradual symptoms can be put down to age or the menopause.
Oddly I absorb folate from food. Not b12 vit d or enough iron though.
I've never had an intrinsic factor test . I was given the partial cell antibody test.
I will get my medical record amended.
Despite this my Gp prescribee b12 Injections .
Thank toy for your helpful reply
We've added some clarifying points below the guideline on the post.
Got the email this morning.
Well done to Martyn & his team for never giving up!
Hopefully it's the beginning of big changes to come 👍
This is very promising for the future, so I'm hoping that interest might well be shown in the current PAS research.
I had already met one metabolics consultant from Australia who had heard of Martyn Hooper, knew about PAS (and the support they offer) and knew about the research trials !
Not surprised about the reluctance to go down the self-injection route, although good that it was recognised that it occurs.
Didn't see a mention of the serum B12 retesting post-pandemic. Let's hope that's not going to become a thing.
I'm guessing NHS will be far too busy to waste time on this.
However, it would be good to have that clarified in guidelines as inadvisable practice.
Better late than never
Reply from my local ICB
