Need proof for clueless Doctor

Anyone with PA have something I can be armed with to show at upcoming appointment? Dr. says my test show Pernicious but I only need 1 shot a month because my blood test show high b12. I'm so tired of trying to tell this over and over and over that 3 days after my shot my nerves are a wreck. I can't see well, my memory so bad , exhausted and ect... I've tried it her way once a month and guys I am not kidding I felt like a zombie.

I'm glad it's people on here like Wedgewood that showed me I could order them myself. Until this PA diagnosis she was a good dr. But unfortunately if she's stuck in this way of thinking and I can't convince her otherwise, I will have to let her go. I absolutely HAVE TO HAVE IT AT LEAST TWICE A WEEK. Appreciate what you guys can share. Thanks, Best.

[Nackapan]

Doctors csn prescribe what is in the best interests of their patient.Bnf guidelines do state every other day until no further improvement.

I asked to restart my loading doses and went from there.

I have not got a PA diagnosis.

Do get a Copy of your positive test result

I think it's in the BSH guidelines no further testing of b1e required once on injections

Uses the search to.

Loads of old posts on this

[Hidden in reply to Nackapan]

Thanks Nackapan. Best!

[Gambit62 Administrator]

Please note that BNF applies in the UK. If you are in the US there isn't a standard protocol - treatment varies from hospital to hospital and practice to practice.You could try pointing your doctor at the area on the PAS website that is aimed specifically at helping medical practitioners to improve the diagnosis and treatment of PA

pernicious-anaemia-society....

[Hidden in reply to Gambit62]

Gambit62, Thank you for taking the time to share resources. Best

[Sleepybunny]

Hi,

A few links that might be useful....

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

Useful leaflets/articles on PAS website. Some info may be UK specific.

pernicious-anaemia-society....

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

PAS conference 2019 - videos

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I am not medically trained.

[Hidden in reply to Sleepybunny]

Sleepy bunny, thank you so much for that treasure chest of information. I will get right on it downloading and printing. GOD BLESS YOU🙏

[shaunbaxter82]

Hi, I’ve just come from seeing a doctor regarding my extreme fatigue. I’ve been receiving B12 injections for the past three years. All he was interested in was who diagnosed P.A., did they do the proper tests etc. Why am I having eight week injections etc. All the relevant information was in my file, but my attitude is that I know my body, I know when it’s not functioning properly. I am not a hypochondriac and if he’s sceptical or uninformed about the condition that’s his problem. I intend to S I, some doctors only know what they’ve read in books, only people who suffer from this condition really understand what it involves. Fight your corner, even though it’s very frustrating and tiresome.

[Hidden in reply to shaunbaxter82]

VICTORY Shaunbaxter82. VICTORY! Best