Pernicious Anaemia (?): Late 2016 early... - Pernicious Anaemi...

Pernicious Anaemia Society

23,678 members16,678 posts

Pernicious Anaemia (?)

Kellz2018
Kellz2018

Late 2016 early 2017 I was absolutely wiped. I visited the GP who told me to join a mindjog website and told me i may have been depressed. I argued and demanded a blood test.

The day after the blood test i was called and told my ferritin was 7 and folate 2.3 B12 around 220. I was immediatly started on ferrous fumerate and folic acid. They both rose in a few months but still felt awful.

GP Then tested for B12 again but also checked parietal cells. B12 came back lower than the periods 220 (i think around 180) with high parietal cells. She said ive got the start of PA. She started me on the every other day shots and now just had my 3rd lot of 3monthly injection.

I have complained to the dr of still feeling quite tired, low, unsteady fuzzy headed confused and words jumbled. She Sent for bloods which say normal levels however she is chatting to me tomorrow about FBC and electrolytes results and may even stop the B12 or lessen frequency.

I now wonder if the diagnosis of PA was correct? As i have been taking Omperazole for around 12 years which can cause B12 def.

I am awaiting nissen fundoplication to my stomach.

Anyone else had the same experience?

4 Replies
oldestnewest
Gambit62
Gambit62Administrator

are you taking omeprazole for acid reflux - this could actually be a sign of low rather than high stomach acidity. Low stomach acidity would be consistent with PA.

Think the answer to your question is that others have had similar experiences - GP understanding of what PA actually is and how B12 works tends to be quite poor and confused

Do you notice any improvement in symptoms when you have a B12 shot - if the answer is yes and it then diminishes with time and symptoms come back well before your next B12 shot then it probably is a B12 absorption and it is being undertreated.

Serum B12 isn't a test that can be used to manage a B12 absorption problem after shots have started - it only tells you about levels in the blood which are being artificially maintained by the injections and doesn't tell you what is now happening with B12 getting into and being used in your cells. Most people who are being treated for PA seem to need much higher levels in serum to feel well

You may want to point your GP to the area on the PAS website specifically aimed at helping medical professionals to improve the diagnosis and treatment of PA and B12 absorption problems

pernicious-anaemia-society....

Kellz2018
Kellz2018 in reply to Gambit62

Thank you for your reply. Much appreciated.

Yes i take Omperazole for stomach acid. Its been confirmed that the esophageal sphincter doesnt work as it should do.

B12, well yes i do feel better but quickly feel awful again. Im hoping that the GP when she calls tomoz has answers.

Thank you once again for your reply and also the useful link.

Kelly

clivealive
clivealiveForum Support in reply to Kellz2018

Was your Folate level tested in the recent FBC Kellz2018?

Yes. I dont know the outcome yet. Ferritin B12 and folate were checked. They want to discuss fbc and electrolytes - see what they say tomorrow now!

You may also like...