Hello,
I am new to the group and full of questions. My father had pernicious anemia so when I started feeling off after months of trying to figure out what was wrong...I had my labs drawn. My intrinsic factor was listed at 47.7. I can not find anything to indicate if this is what would be considered normally high for someone with this issue?
Any insight would be great.
Thanks,
ASH
you need to find the normal range provided for the test. In general this is <1 but it can vary.
Based on the usual measurement used in most labs this would be a positive result, meaning that you have PA diagnosis (test rarely gives false positives).
Hi ASHT007,
You might find the following helpful......
The Intrinsic factor normal range is 1.21 to 1.52 AU/mL. The test will tell you whether you test positive or negative for the Intrinsic factor blocking antibody or Intrinsic factor binding antibody. Less than 1.20 AU/mL is considered negative and more than 1.53 AU/mL is positive.
What is considered a low B12 level in NHS?
Reference range: B12 <100ng/L: likely deficiency, commence treatment; 100-145ng/L: possible deficiency. If clinical findings suggest deficiency consider a trial of therapy and assessment of response. Suggest consult guidelines in Remedy; 146-200ng/L: may still indicate deficiency.
Its about what mine was when last tested. Positive is positive, it doesn't really matter what the numbers are, as they can fluctuate over time.
Scientist, not medic.
Measuring stuff in blood is only part of the answer; interpretation of the numbers is rather more important. Assigning numbers to something like intrinsic factor antibodies, rather than reporting an interpretive result [Positive, Negative, Equivocal, suggest repeat in 3 months] etc is more helpful. You don't state the reference range that should have been given with the result.
Simply reporting a magic number is unhelpful.
If your GP isn't able to interpret the result then it's worth seeking someone who can help.
A haematologist or a gastroenterologist might be more useful.
Hi ASHT007,
Welcome to the forum.
Just wondered if you'd considered joining PAS (Pernicious Anaemia Society).
They're based in UK but have overseas members.
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
PAS Contact Details
pernicious-anaemia-society....
There is an online contact form for overseas members.
There are PAS support groups in UK, US, Sweden and Australia/New Zealand.
pernicious-anaemia-society....
Lots of useful PAS leaflets.
pernicious-anaemia-society....
Some info may be specific to UK.
It's helpful to know which country you're in as patterns of treatment and type of B12 used can vary.
Other useful B12 websites
B12info.com
Run by a UK campaigner on B12 deficiency issues.
B12d.org (UK charity)
They have interesting online talks.
The B12 Society (Charity based in Scotland)
B12 Awareness (US website)
Stitchting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/english/
Two useful B12 books
These were published a few years ago so some bits may need updating.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the former 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.
Films and videos about PA and B12 deficiency
pernicious-anaemia-society....
Help for doctors
Many of us have met health professionals whose understanding of PA and B12 deficiency is limited.
1) PAS have a page for health professionals. Free for health professionals across world to join as Healthcare Affiliate Members.
pernicious-anaemia-society....
2) Are your doctors members of Club B12?
This is a group of researchers and doctors across the world who are looking into B12.
They have regular zoom meetings and have a symposium in Cambridge, UK Sept 19th/20th Sept 2024.
3) Useful articles to pass to doctors.
From Mayo Clinic, US
pubmed.ncbi.nlm.nih.gov/311...
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Bruce H R Wolffenbuttel 1, Hanneke J C M Wouters 1 2, M Rebecca Heiner-Fokkema 3, Melanie M van der Klauw 1
Affiliations expand
PMID: 31193945 PMCID: PMC6543499 DOI: 10.1016/j.mayocpiqo.2019.03.002
Free PMC article
Recent BMJ article about B12 deficiency by B. Wolffenbuttel
In my personal opinion, he's one of the few doctors who understand B12 deficiency.
bmj.com/content/383/bmj-202...
Vitamin B12
BMJ 2023; 383 doi: doi.org/10.1136/bmj-2022-07... (Published 20 November 2023)
Cite this as: BMJ 2023;383:e071725
The author of above also wrote an article for PAS in Jan 2024.
Only One Chance
pernicious-anaemia-society....
If you're in UK, there's lots of other info I can pass on to you.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
Intrinsic factor etc
Intrinsic Factor test Negative :-(
Intrinsic Factor Negative
Intrinsic Factor Positive
Intrinsic factor
