Just confused over my blood results, my b12 went from 197-144 in just one week. My intrinsic factor was 2. I am currently on my third injection and not feeling much better.
The nurse says I wasn’t absorbing b12 at all but the gp was very vague in diagnosis. I have a lot of symptoms of PA and have done for many years. I was low in b12 many years ago too but I only took tablets back then.
Any advice would be great tia
Hi,
If you're not already a PAS member, I suggest joining and talking to them if you suspect PA.
They can offer useful info and support.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
No meetings during pandemic.
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
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.
Link about "What to do next" if B12 deficiency suspected or newly diagnosed.
b12deficiency.info/what-to-...
UK B12 documents/articles
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
Some parts of UK have their own local guidelines that may differ from info in BSH guidelines link.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, B12 books, B12 websites, UK B12 documents and other B12 info including some hints on dealing with unhelpful GPs which might have something useful.
healthunlocked.com/pasoc/po...
The pandemic is impacting patients' B12 treatment in UK.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest.
healthunlocked.com/pasoc/po.....
I am not medically trained.
PA is an auto-immune condition that affects the gut - it attacks the mechanism that allows you to absorb most of your B12 - resulting in B12 deficiency. Your IFA test coming back as 2 (really need to know what the range was) sounds as if it is a positive result confirming that it is PA that has caused the problem.
The human body will tend to use stores of B12 in the liver to maintain B12 levels where they need to be but this mechanism relies on the same one as is attacked in PA. However, it can take a very long time for the stores to be used up which is why it can take years for symptoms to develop and a deficiency to to be identified.
Some people, even people with PA, find that high dose oral enables them to maintain B12 levels using passive absorption but passive absorption is a bit hit and miss and for some people it doesn't work very well.
GPs don't learn much about B12 and other micronutrients during their training and can be horribly confused and confusing if asked to explain to a patient what is going on. I was diagnosed in hospital after admission for a broken ankle. The consultant only mentioned B12 deficiency because it was pointed out by their assistant and used it as a chance to ask his students about B12 deficiency - the main things I remember from that conversation were constipation and some mentions of bone disorders. My GP was even worse telling me that B12 had nothing to do with psychiatric symptoms and that it had obviously been caught early because I was only just showing signs of macrocytosis.
B12 is only found in animal products so if you weren't eating much of these the first time you had low B12 it may well have been dietary. Unfortunately a dietary deficiency doesn't rule out an absorption problem being present as well.
Neurological pernicious anemia?
Pernicious Anemia treatment
Pernicious Anemia and Chicken pox 
Possible Pernicious Anemia
Pernicious anemia being stopped
