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!