Hi all
I’m trying to find good doctors who really know about pernicious anemia. I have lots of symptoms and my great grandfather died of it (in the days before treatment was available). I’ve been recommended one, initials AL, who sound amazing but my health insurance doesn’t cover him. I know you can’t recommend on the public forum but private replies would be very welcome!
Thank you
Mimi S
I think you will be hard pushed to find anyone we all seem to have been searching for a long time . PAS is raising funds at the moment I believe to jointly pay (along with government I think ) to put a medical student through a PhD in Pernicious Anemia and they have also got a group of doctors to get together on a regular basis to talk and update on whats going on with treatment etc . You will find a lot of information on the PAS website that may be of help.
Best wishes 👍
pm sent mimi
Hi,
If you've currently got a NHS GP who doesn't understand PA and B12 deficiency, there's lots of B12 info in my replies on threads below .
I don't have a PA diagnosis although I suspect Antibody Negative PA is a possibility, all my PA tests were negative.
I suffered for years from unrecognised and untreated B12 deficiency and count myself lucky to have avoided permanent dementia and spinal damage.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
thanks all! Have come to the conclusion that the easiest path might be to just pay for b12 injections and see whether they help! Seems madness but I can’t face another fight with another medical professional. I’m tired enough…
Some forum members resort to treating themselves, I see this as a last resort though.
If you have the time and energy to look at the links to threads I left at the bottom of my post there should be information in there that you can use to try to persuade GP to treat you.
Usually I would write a very detailed reply for a first time poster but ran out of energy.
Do you have a PA diagnosis?
Have you considered joining and talking to PAS?
You do not need a confirmed diagnosis of PA to join.
PAS membership is separate to membership of tjis forum.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
PAS support groups can be a useful place to swap information. I don't know if face to face meetings have resumed.
Testing for PA
pernicious-anaemia-society....
I've also read that a pepsinogen test may be useful.
There are lots of useful leaflets/articles and a page for health professionals that your GP may find useful on PAS website.
pernicious-anaemia-society....
pernicious-anaemia-society....
Unhappy with Treatment (UK info)
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering a variety of situations linked to B12 deficiency.
Lots of useful info on the website.
NHS Complaints
patients-association.org.uk...
Care Opinion website
Patients can leave reviews of their experiences. Reviews can be anonymous. Sometimes GP surgeries/hospitals etc respond.
Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.
A few go to the Press/other media if unhappy with treatment.
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
Some UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
Have you found out what's in the local B12 deficiency guidelines for your area?
Search forum posts, try an online search or submit a FOI (Freedom of Information) request to your ICB (Integrated care Board) or Health Board website asking what guidelines they use for B12 deficiency.
Read blog post below if you want to know why I suggest this
b12deficiency.info/gloucest...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper founded PAS (Pernicious Anaemia Society).
BNF info in book is out of date. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
A good article to pass to GPs.
Good luck and I hope you find a way of getting the treatment you need.
Oops, I upset the doctor!
receptionists acting like doctors?
Doctor says to stop B12?
New doctor, old ignorance
