Feel I have to research pernicious anaemia then go to Drs and give them the info. I’m to tired to do it. Any advice?

[So-tired]

Absolutely knackered..........Dr doesn’t understand why. Mum had pernicious anaemia feel to tired to explain to Dr . I feel I have to research it and then go and educate the Dr about it. Any advice?

[Nackapan]

Just ask for a b12 blood test and intrinsic antybody test. Also iron thyroid and folate vit d .

[So-tired in reply to Nackapan]

They have done a B12 blood test it has come back as normal. My Mum had pernicious anaemia years ago and had to be referred to hospital after months of going back and forth to Drs. It was only at hospital that they found pernicious anaemia. I was one B12 injections but when I moved four years ago they did blood test and said I wasn’t anaemic, since then I have struggled just getting from day to day and now I ground to a halt. Regards, Lynda.

[Survivorette]

It’s terrible but you have to keep it up. They’re trying to change things in a way that will harm many. We need to keep speaking up. Bless you I get how tiring.

[Tuscansun]

Can you get B12 ampoules and do injections yourself? It will be more effective way than educating Drs.

[Sleepybunny]

Hi,

Have you thought about joining then talking directly to PAS (Pernicious Anaemia Society)?

PAS can offer support and suggest useful info to pass on to your GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

PAS Symptoms List

pernicious-anaemia-society....

Perhaps you could tick off your symptoms and pass list to GP?

Help for GP

1) PAS website has section for health professionals. It is free for them to join PAS.

pernicious-anaemia-society....

Perhaps your GP would be interested?

2) PAS website has section with lots of useful leaflets.

pernicious-anaemia-society....

You need to be a PAS member to print out most of these. Some forum members pass these on to GPs

Useful leaflets/articles include

"An Update for Medical Professionals: Diagnosis and Treatment"

3) I gave one set of GPs a copy of

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

I suggest including a note with book that the BNF info in it is out of date.

Current BNF info

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

4) Is your GP aware of the UK document below?

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

I gave a copy of above document to one set of GPs.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates people can base their own letters to GPs on.

I wrote a very detailed reply on another forum thread with links to B12 books, B12 websites, UK B12 documents/articles , other B12 deficiency symptoms lists and other b12 info.

If you're tired I suggest reading it over a few days.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Nackapan]

Hope you get back with treatment very soon

[Sleepybunny]

Hi again,

"I was one B12 injections but when I moved four years ago they did blood test and said I wasn’t anaemic, "

I wasn't quite sure what you meant above.

Do you mean you were having B12 injections with your old GP surgery and they were stopped at your new GP surgery?

Many people with B12 deficiency do not have anaemia . See link to BSH guidelines in my post above.

Treatment for PA should never be stopped; it's life long and there are other causes of B12 deficiency that require life long treatment .

If you join PAS you can print out their leaflet " Treatment is for Life".

pernicious-anaemia-society....

Articles from Dutch B12 website

(in English language, units and reference ranges may be different to UK)

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

Testing B12 during treatment

stichtingb12tekort.nl/weten...

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...