B12

[Catlover3]

My daughter has had to have B12 injections twice within a year. Blood test for GPC antibodies came back as negative. B12 3 months after injections is 253ng/L (180 - 900). Serum folate 22 range 4.0 - 20. She has been supplementing folic acid which will explain high reading. Should she take sub lingual B12 in the hope it raises her level? Or do we wait for another blood test to see if it drops further. She is suffering with extreme tiredness and can't stay awake.

[Clutter]

Catlover, was intrinsic factor also tested? Your daughter is neither cleaving B12 from nutrients or holding on to the B12 injected. You will get detailed advice if you post on the HU Pernicious Society forum.

[Catlover3 in reply to Clutter]

Hello. Thanks for your reply. I really don't know enough about this unfortunately. Print out said GPC antibodies will be filed as 43G4.00 Parietal cell autoantibodies. Negative. She has been struggling for a long time but because she is depressed everything is put down to that.

[Clutter in reply to Catlover3]

Catlover, Depression doesn't cause low B12 blood levels, but low B12 may cause depression. Please try the PA forum.

[Jazzw in reply to Catlover3]

So that was a test for parietal cell antibodies, which looks positive, rather than negative (depends on the reference range though) southtees.nhs.uk/services/p...

But it wasn't a test for intrinsic factor. And according to this, GPC is not the most sensitive test: b12deficiency.info/assets/p...

[helvella Administrator]

Many on the Pernicious Anaemia Society forum here find injections every three months (12 weeks) wholly inadequate. Twice a year is dreadful.

Quite a few years ago, it was usual to have an injection every month. Then they slipped it to every two months - with no evidence that it would be sufficient. Then more recently slipped it to every three months. The basis of time between injections seems to be "how few injections can we pay for?"

In my book, you go over to the PAS forum. You post. You get the appropriate guideline references. Then you go to doctor and politely ask for more injections. If that doesn't work, you raise the roof.