B 12 problem or Pernicious Anaemia?

[Mariemcdo]

Hi, I wonder if anybody could clarify how you find out whether you have pernicious anaemia or B 12 Def? What separates the two? Sorry if this is such a silly question!

[Gambit62 Administrator]

Not a stupid question at all - particularly as the terms are not consistently used by GPs and other medics - and a lot are quite confused about what PA is. Sometimes it is specifically linked to the presence of macrocytic anaemia as a result of the B12 deficiency it causes, but this isn't one of the presenting symptoms for 25% of patients so the confusion with anaemia can be problematic in getting correct diagnosis.

Strictly speaking PA is the result of auto-immune gastritis - an auto-immune response which attacks the mechanism that allows B12 to be absorbed in the gut - and can also affect larger areas of the gut and can lead to other mineral and vitamin deficiencies.

B12 deficiency is the result of not having enough B12 at the cell level. This can be caused by lack of B12 in your diet, or by an absorption problem in your gut - PA is the most common absorption problem but others include coeliac's, h pylori infection, crohn's, and various drug interactions.

Different causes will have different consequences - PA, for instance, means a higher risk of some stomach cancers (though only marginally higher - so it is useful to tie down the exact cause. PA is diagnosed in the UK by using the IFA test but as the test is prone to false negatives (40-60% of the time depending on the assay method) it can be quite difficult to get to an exact diagnosis.

[gg317 in reply to Gambit62]

if your dr doesnt test, how would one know if they had PA?

[fbirder in reply to gg317]

My haematologist started off my one appointment with him by telling me I definitely didn't have PA. He based this decision on the fact that I hadn't had a test for IF antibodies! Not that I'd had a negative result, but that I hadn't had the test done. That told me all I needed to know about him.

I asked him how he explained: low B12, positive anti-GPC antibodies and Metaplastic gastric atrophy. He conceded that i probably did have PA.

[gg317 in reply to fbirder]

interesting, some do not know why they were low

[Gambit62 Administrator in reply to gg317]

you could be tested for everything else and if nothing else comes up then PA is left as the only remaining option but that could take a while and tests for other things may suffer from the same effects.

PA is the most likely explanation of a B12 absorption problem.

[gg317 in reply to Gambit62]

i was tested at 500 in 2013, march 2017 215...not explanation why. When I asked for further test, I was denied. I would love to prevent being low again. I had clumping blood, and vit d at 20.

[Gambit62 Administrator in reply to gg317]

all testing of serum B12 does is show that you have an absorption problem. It isn't a test for the cause. PA is the most likely cause but the test isn't particularly reliable as a diagnositic tool.

Unless your GP can definitely point to some other condition causing the problem then the conclusion would be PA.

[gg317 in reply to Gambit62]

oh wow, I had weekly injections for 1 month, then once monthly for an additional 5 months before treatment ended with my levels reading at 1000. Seems like if I were PA, i should continue treatment. Would this condition have any connection to low vit D levels?

[Gambit62 Administrator in reply to gg317]

yes, you should be on injections for life - though for some high dose oral can be an effective way of maintaining levels but you really need t start that just after you have had a maintenance dose.

Low Vit D is common in a number of conditions - not sure if it is related to absorption problems or not. Haven't really researched and haven't come across anything incidental whilst researching oterh issues.

[deniseinmilden in reply to Gambit62]

Thank you for putting it so clearly - I have saved this!

[Alfabeta]

I am a vegetarian very close to vegan and my doctor proscribed omaprezole on 6 month recurring prescription- I was on them for, on and off, over six years. I have b12 deficiency but the symptoms I get are not common with PA hence each time I tell my doctor that I go semi conscious as in a trance for periods up to 10 seconds get tinnitus during these periods then auditory hallucinations - he claims they are no symptoms associated with b12 deficiency. I even spoke to a neurologist twice a s was told they were not symptoms yet the b12 site lists them as symptoms and tinnitus is on the nhs list of symptoms.

I just dose myself with b12 daily and take folic acid and iron and hope for a day when these symptoms cease.

Chris

[Urbansky]

I had a endoscopy they took biopsies from my stomach as result of that they told me I had PA

They also told me I had a Iron deficiency so was diagnosed with different types of anemia

Also confirmed other deficiencies

So I now have B-12 Injection for the PA and Iron tablets daily for the other both of which hospital said I should take life long

[Sleepybunny]

Hi,

This flowchart outlines when PA or Antibody Negative PA can be diagnosed in UK.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

[fbirder]

if there is no obvious cause for the deficiency not being due to an absorption problem (being vegetarian/vegan, being an abuser of nitrous oxide) then treatment should be the same regardless of cause.

Luckily this viewpoint is becoming more common. Hull and East Yorkshire NHS Trust have some notice guidelines on diagnosis and treatment of B12 deficiency that recognises that the serum test has a 'grey' area and that symptoms and their response to treatment are paramount.

hey.nhs.uk/wp/wp-content/up...

I think all GPs should be aware that some of their colleagues have a modern, evidence-based protocol.