Can it still be pernicious anemia - Pernicious Anaemi...

Pernicious Anaemia Society

31,948 members23,087 posts

Can it still be pernicious anemia

123adshead profile image
3 Replies

Hi been a frequent visitor reading many posts, finally decided to ask for some advice.

I have been having B12 injections for apx 3 years, initially every 3 months after loading doses then 4 weekly. This was after complaining that I wasn't improving and first loading doses being given over 6 weeks not 2. So after 3 years the nurse decided I needed to have instrinsic factor test which came back normal. I was feeling really rubbish at this time so went to the dr had parietal cell test also normal, I had H pylori bacteria a couple of years ago and was treated for it, redid this test and also clear. Was thinking it could be atrophic Gastritis but seems not. However the thing that came up was low vit D & low folate been supplementing over the past 5 weeks and feel a little better. However I'm now even more confused about what is going on and why I'm low on now 3 different vitamins. Anyone got any ideas what's going on ? Could it be that I have an absorption problem in my stomach rather than PA and where do I go from here ? Should I ask to see a specialist and who would this be ?

Anyone else have multiple deficiencies ?

Written by
123adshead profile image
123adshead
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Galixie profile image
Galixie

If you've been reading here, you're probably already aware that the intrinsic factor antibody test has a high rate of false negatives. So even though you tested negative for intrinsic factor antibodies, you may still have PA. Of course your history of having h. pylori could certainly have led to your absorption problems and, even though you've successfully been treated for that, some damage may still remain making absorption difficult.

Vitamin D deficiencies are very common, unfortunately.

I have had a similar experience where I've been tested for all sorts of things but never got to a solid conclusion for why I need B12 injections. I tested negative for h. pylori though, so I'm even more lost than you are, I'm afraid. I eventually reached a point where I realized it just doesn't matter what the underlying cause is, because whatever it is, there is no way for me to change it. I just need to take B12 to stay well.

Gambit62 profile image
Gambit62Administrator

very much agree with Galixie on the testing - you can just end up going round in ever decreasing circles because the tests aren't really conclusive - either IFA or PCA (which is no longer recommended as a test in the UK as it is so unreliable both ways). Whatever the absorption problem with B12 the treatment will be the same.

Sleepybunny profile image
Sleepybunny

Are you in UK?

Flowchart in link below shows UK recommended process for diagnosing and treating B12 deficiency. It mentions Antibody Negative PA (PA where IFA test is negative)

stichtingb12tekort.nl/weten...

If you are UK based it may be helpful for you to read whole "BSH Cobalamin and Folate Guidelines"

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines or put "cobalamin and Folate guidelines" in search box.

Causes of b12 deficiency

b12deficiency.info/what-are...

Other Uk b12 websites

pernicious-anaemia-society....

b12d.org/

You may also like...

Can Pernicious Anemia cause Parkinson type symptoms?

post. I have found the information here really helpful. I was told 6 weeks ago my blood test showed...

Can pernicious anemia cause sudden, severe diarrhea?

diagnosed with P.A. and have had 7 injections so far (hydroxoco, 1mg). For weeks before I started...

Heart disease and Pernicious Anemia

interest in my info. I have 1 more `loading ` dose next week, then have a blood test to re-check...

Pernicious Anemia Please Help!

but I don't think I have a choice and I would definitely start at a super low dose but of course,...

Visit to hematologist for pernicious anemia

diagnosis (positive IFA test). After loading doses and tracking symptoms I have increased my...