Is pernicious anaemia likely?

[rebecca98]

Hi everyone,

I'm 20 and I've been experiencing intense B12 deficiency symptoms since December, and have been housebound or bedbound due to muscle weakness and fatigue and inappropriate sinus tachycardia. I suffered extreme weight loss, and have a symptom list as long as my arm, all of which correlate with the symptoms of pernicious anaemia. I know serum b12 levels are inaccurate, but back in June they were 288 ng/L (ref 200.0 - 660.0). I started supplementing with BetterYou B12 sublingual spray (so it goes directly into the bloodstream, which my endo said was better than injections??) late June, taking 300ug per day. The difference was astonishing - all the weight came back on, all my symptoms either disappeared or reduced by around 80%. I went from being bedbound most of the time, unable to lift my head from the pillow or dress myself, to being able to walk for miles. Then, in August, it suddenly stopped working. My symptoms came back. The only relief I had was when I upped my daily supplement to 900ug. My mean cell haemoglobin level has consistently been above the reference limit. In June it was 33.1 pg (27.0 - 32.0). My white bloods have always been borderline low.

Doctors don't want to believe that I could have an issue with B12. Autoimmune diseases run in my family.

I had another blood test last week. I'm waiting for the results of intrinsic factor, but my MCH is still above the reference limit, now 32.3 pg. My serum B12 is now 949 ng/l, which is way above the reference limit and I'm afraid my doctor is going to look at that and say that B12 deficiency is impossible. I figure that because my B12 supplement goes straight into the bloodstream, that it's being stored even if it's not being used.

What do you think? Is pernicious anaemia or functional deficiency likely? Should I keep pressing and ask for a trial dose of injections despite my now high serum levels? Should I ask for a referral to someone who can test for MMA? Help, please!

[fbirder]

It’s almost certainly not PA. Not if an oral supplement gets your serum levels that high.

If you suspect a functional deficiency (lots of B12 in the blood, not enough getting into the cells) then an MMA test should be able to tell if that is the case.

[rebecca98 in reply to fbirder]

Thank you! B12 is the only thing that makes me feel better, so I think the MMA might be worth a shot. Any idea if I have to quit the supplements before taking the test?

[fbirder in reply to rebecca98]

If you want to show that you have a functional deficiency then you need to test MMA while supplementing. If you stop the supplements for several months then all an MMA test will show is that you are B12 deficienct when you don’t take supplements.

[deniseinmilden]

Whether you get an official diagnosis of PA or not, the most important thing is that you get better.

I have major B12 deficiency problems without a PA diagnosis. The spray helped me hugely for a while but then stopped working and I have to have high level daily B12 injections plus supporting supplements.

I think a trial of injections is important for you.