2009 - diagnosed with Hereditary Pernicious Anemia. Advised of need for monthly B12 shot & did so religiously. Severe & hospitalized, nerve damage, but made a good recovery
2013 - MD "said?" B12 high & started to cut me down to shot every 4 mos. She did this WITHOUT monthly monitoring. Coincidently, this "action" coincided with the "shortage" memo that was released.
2013-2014 - MD ignored my physical complaints, swollen tongue & lips, sores on tongue & lips, shriveled fingertips, stomach noise. Got very sick & B12 PLUMMETED down to 300.
Naturally, I "ran" from this MD & educated myself as to the testing necessary to prove my condition when I went to my current MD.
What I'm finding is that MOST MDs don't know what is involved with Pernicious Anemia and B12 and how the audit trail of events occur as B12 starts to get low.
Monthly blood tests come out "NORMAL" only because of the monthly shot, but many MD's "THINK" you're cured when they see a reading within the published B12 "range". My brother & I MUST be on the high end of this range or we start to get really sick.
I am finding that hematologists don't understand the dietary needs and concerns associated with B12. And many internists don't understand the Blood levels, acid levels and intrinsic factor problem.
WHERE DO I FIND A KNOWLEDGEABLE MD IN NJ/NY?