DysautonomiaWarrior

Sometimes serum levels of some vitamins do not reflect whole body stores. B12 is an example. I was low normal on B12 but PCP and I decided on subq cyanocobalamin. Certain supplements can be destroyed by gut acid, but injections or sublingual are not affected. They produced excruciating foot neuropathy for me. A little known cause I learned with my work with interferon was bone marrow suppression. It just wasn’t putting out enough red cells causing anemia, a known cause of dysautonomia. We would put them on epogen subq for the duration of treatment. Anemia can have many causes, some you don’t expect or even know about. I have Gilbert’s disease where I’m missing the enzyme glucuronyl transferase which breaks down bilirubin, one of the products of red cell degradation and bilirubin builds up in the blood causing anemia. I was always borderline low on all red cell parameters and then 2 hip replacements and the bottom fell out. Transfusion city and systemic inflammatory response syndrome requiring transfusions. And I guess I have a real chip on my shoulder and don’t trust docs further than I can throw ‘em. That’s why I had to diagnose myself mostly.