How will that work? Next time it could say negative as unreliable. Also said that test doesn't mean I have PA there is another test they do also alongside the IFA test to conclude PA and both have to be positive. What test does she mean exactly? Said my IFA test slightly out of range but doesn't confirm PA. I was shocked! Help.
Doctor not accepting my Intrinsic fac... - Pernicious Anaemi...
Doctor not accepting my Intrinsic factor A test, wants to do her own.
Suggest you refer your GP to the BCSH standards in relation to being able to draw any conclusion from a negative on IFA.
onlinelibrary.wiley.com/doi...
These guidelines provide a summary of various tests and their limitations - including the fact that a negative on IFA is a long way from proving that you don't have PA, whilst a positive is good confirmation that you do.
The other test she is referring to is probably GPC - the WHO doesn't recommend this test as it tends to give false positives.
Thank you I will, it's all so frustrating. I thought with the positive paperwork to prove it I was over the hurdle. Not so!
You could also ask your GP when the standards she is referring to were last updated. Many NHS regions are using standards that predate 2014 when there were some major changes to the BCSH standards, so may be working to very outdated standards
Yes I need to as she also said she noted my injections were every six weeks when they should only be every 12. She is obviously going to reduce those also even though I mentioned the other symptoms of fatigue, memory problems, tinnitus, burning feet, tingling feet, random electric shocks, bumping into things, dizziness etc.
Hi,
You could show her this flowchart from BSH Cobalamin and Folate Guidelines which outlines when PA or Antibody Negative PA can be diagnosed in UK.
stichtingb12tekort.nl/weten...
About 50 % of people with PA have a negative result in IFA test.
Link about IFA test, see section on what test result means.
labtestsonline.org/tests/in...
About 10% of people with PA have a negative result in PCA test.
Link about PCA test, see section on what test result means.
labtestsonline.org/tests/pa...
I suspect that there are at least a few people with PA who have both negative results in PCA and IFA tests.
I think the reliability of both tests is discussed in the guidelines Gambit62 refers to.
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members in other countries.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
PAS have a leaflet which PAS members can access " An Update for Medical Professionals: Diagnosis and Treatment "
pernicious-anaemia-society....
More B12 info
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BMJ B12 article
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
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).
Book does not mention recent change to BNF.
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 (USA 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".
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
More b12 websites
B12d.org holds support meetings near Durham
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
More B12 info in pinned posts.
I am not medically trained.