Hi I ’m new to the group, I recently got a B12 deficiency diagnosis after months of feeling poorly I’ve just had a course of 6 jabs over 2 weeks not feeling any better yet but I only finished the course a few days ago. My question is how do I know if I am just deficient or if I have pernicious anaemia which with my little understanding means supplements won’t help and I’d need regular top up injections? I have a blood test scheduled for 6 months time.
Thanks in advance x
Hi tantoller,
There is a test for intrinsic factor which is for Pernicious Anaemia but I understand it's not always accurate. Not everyone is tested - my GP will not test me and disagrees that I have a deficiency.
Frequency of injections depends on symptoms, for neurological symptoms the recommendation in the UK is every other day injections until further improvement. So if you have neuro symptoms this will not be enough.
b12deficiency.info/signs-an...
I just had a look at some guidelines and it may be that your level was considered sufficient to be topped up with 6 injections and then monitored. For example see below flow chart nottsapc.nhs.uk/media/1330/...
The arguments start when people's symptoms do not improve according to schedules and then this depends on your doctor (and not everyone's level is considered low enough to be treated even with symptoms).
Welcome tantoller,
There’s lots of very knowledgable people here to support you. I’d recommend keeping a diary of your symptoms,
Learning as much as you can about PA/B12 deficiency as possible by reading Martyn Hooper’s books/blogs - he’s the chairman of the Pernicious Anaemia Society.
You may want to join for £20 membership.
Ask for print out of blood results as folate and ferritin play a role in vitamin B12. See Tracey Witty’s B12 website. (Bonjour’s first link takes you there)
And as Bonjour said the test for intrinsic factor antibodies is not very reliable.
Hope this helps and you feel better soon.
The best way to diagnose PA is a process of elimination.
Are you vegan or vegetarian? If so then your deficiency is probably caused by diet and you should try oral B12 to see if that keeps the symptoms at bay.
Do you abuse nitrous oxide? Doing so will cause a B12 deficiency. Stopp the NO2 and the deficiency will be fixed.
Otherwise you have an absorption problem.
Possible causes of an absorption problem include - Crohn's disease, Coeliacs disease, long term use of PPIs or metformin, Helicobacter pylori infection, gastric band surgery, ileostomy, colostomy.
If you have none of them then you almost certainly have PA.
You can get tested for antibodies to Intrinsic Factor. If positive then you have PA. If negative then you might still have PA.
You could see a gastrologist and get a gastroscopy and have serum gastrin levels measured. PA is actually caused by Autoimmune Metaplastic Gastric Atrophy. If you have AMGA then the gastroscopy with show gastritis restricted to the corpus and fundus of the stomach. Biopsy samples will show metaplasia (the wrong sort of cells in the stomach wall) and your gastrin levels will be high. Tick those three boxes and you have AMGA and, hence, PA.
Dear fbirder. You are a tower of strength in this crazy world. Thank you so much for your gentle wisdom. 🙏
Thanks guys, I am vegetarian and rarely eat eggs or drink milk so hoping it’s just my diet, I’m taking a vitamin B12 supplement now 1000 mcg per day (I know this is a high dose but my understanding is your body gets rid of what you don’t use).
It doesn't really matter if it's high dose as your body will not be able to absorb more than about 10 mcg at a time. You'd be better off taking a lower dose two or three times a day.
It's much, much, more likely that your deficiency is caused by your diet than that you have PA. Your initial loading dose of 6 injections should have boosted your levels to where you have enough B12. Keep taking the oral supplements and see how you feel.
As always there's lots of good advice here. As a bored scientist, I'll just add a bit of my voluminous knowledge. William Osler is reputed to have said 'Listen to your patient; he is telling you the diagnosis'.
A vegetarian diet is almost certain to end up short of B12, but if your level rises on oral supplements then it's time to move on and forget about PA. Fbirder's other suggestions are eminently sensible too. If you continue to have a low/very low serum B12 then the Intrinsic Factor Antibody test [IFAb] is positive in around 50% of PA patients, and false positives are highly uncommon. The Gastric Parietal Cell Antibody test is positive in most PA patients but false positives are very common. That's why all of these things are best done with the supervision and support of a knowledgeable and interested medical practitioner. In the absence of any further complicating factors, then my money is on your vegetarian diet!
Good luck.
Hi,
Link about "What to do next" if B12 deficiency suspected or newly diagnosed
b12deficiency.info/what-to-...
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
BSH Cobalamin and Folate Guidelines (UK document)
b-s-h.org.uk/guidelines/gui...
BNF Hydroxycobalamin (UK guidance on treatment of B12 deficiency)
bnf.nice.org.uk/drug/hydrox...
BNF gives two patterns of treatment, one pattern for those without neurological symptoms and the other pattern for those with neuro symptoms.
My understanding of UK guidelines is that a patient with b12 deficiency who shows neuro symptoms should be on B12 injections whatever the cause of the B12 deficiency.
Two useful B12 books
"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.
Lots of B12 info in my replies on the the thread below eg symptoms of B12 deficiency, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs .
healthunlocked.com/pasoc/po...
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.
healthunlocked.com/pasoc/po.....
I am not medically trained.
Wow! Thank you lots of good information
GP says it’s low B12 Level but not PA
Maybe I have more than PA...
