Guidelines in Australia

[2Thess2]

I was wondering if anyone can tell me why I cannot find guidelines for Australia online? I want to be prepared for a fight when I finally, after 43 years of misdiagnoses, get in to see a Haematologist.

[Sleepybunny]

Hi,

Might be worth looking up Haematology societies in Australia and seeing if they have published treatment guidelines on PA and B12 deficiency.

hsanz.org.au/

Here are some UK B12 documents, hopefully you can access these. They might still be of interest to your doctors.

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines (from British Society for Haematology)

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...

BMJ B12 article (from British Medical Journal)

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

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 in UK. These should be published later this year (2023) in UK.

If you suspect PA (Pernicious Anaemia) might be worth you joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

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

PAS membership is separate to membership of this forum.

Other B12 deficiency websites

B12 Info.com website (formerly B12 Deficiency Info)

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort

(Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

b12-institute.nl/en/home-2/

Two 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).

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

"after 43 years of misdiagnoses"

I'm so sorry to hear that...many of us on here have had years of misdiagnosis but 43 years is probably a record.

Misdiagnosis of B12 deficiency

b12deficiency.info/misdiagn...

My personal experience and I think of many on this forum is that PA and B12 deficiency from other causes is sometimes poorly understood by health professionals.

Misconceptions

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.

Above article might be a good one to pass on to your doctors.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from other countries)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from other countries)

b12-institute.nl/en/diagnos...

Forum members from Australia

There are other forum members from Australia who post here. Searching the forum posts for "Australia" brings up several posts.

Some forum members as a last resort choose to treat themselves if they cannot get adequate treatment for B12 deficiency.

Is injectable B12 available over the counter in your part of Australia?

I searched online for "B12 deficiency guidelines Australia" and found a few documents that might be of interest to you.

I'm not medically trained.

[2Thess2 in reply to Sleepybunny]

Thank you so much that is so helpful. I have much to learn. I have read Sally Pocholok's book and watched the movie. The BNF and NICE links don't work for us here, it says they are only available for people in the UK. Still plenty to be going on with though.😊