This will be quite long as my history with anemia has been ongoing and frustrating for years (as well as confounding to my doctors). I was diagnosed with PA 8 years ago with "marginally low" B12 (US 212 with range 200-900), positive intrinsic factor blocking antibody test, and macrocytic anemia. I was also diagnosed with G6PD deficiency at the same time (though I have never tested positive for a hemolytic event contributing to anemia).
Since that time I have been anemic despite B12 loading doses, monthly injections (cyano), folic acid supplements, and the occasional iron infusion (my iron levels are generally normal but have had a few low times over the years and I am now on supplements for that as well). In the last year I have also had on and off neutropenia (low WBCs), consistent low red blood cells, and low mean platelet volumes. Other history: I have maintained a very low Alkaline Phosphatase and have never had the typical high level of homocysteine or MMA since testing started.
Most recently (the last month and a half) I have started experiencing quite a lot of bone pain in my legs and burning feet along with numbness in my fingers (primarily in my outer fingers - pinky and ring). The bone pain has progressed to now including sharp pains and I sleep each night with a heating pad and some days I am completely immobile. I can only wear tennis shoes now as the shock of walking is too much without thick rubber soles.
I am on D3 (10000 ius per day) due to deficiency, and I take all relevant cofactors - magnesium, K2, methyl folate, etc. My doctor has switched me to hydroxy and put me on an every other day SI schedule of 1000mcg. I have been on this regime for over a month with no relief and no change in the anemia or neutropenia. I also now have a low reticulocyte count despite now high results for B12 (>1900), Folate (>18.2) and increasing D levels and the anemia remains normocytic and macrocytic.
I know I am luckier than most to have doctors actually listening and I count my blessing for that. I will say that learning my body, my normals, and keeping track of all blood work has made a huge difference in their attention so I beg all of you to continue to be your own advocates. I have also never hesitated to find new doctors when I find myself getting the runaround.
As of now, I am scheduled for a neurology appointment and a bone marrow biopsy (presumably to rule out myelodysplastic syndrome?) next week. I know this has been long, but this is the most knowledgeable group I could find and I wanted to be sure to answer what seems to be the most common questions.
I would love any other advice, thoughts on the bone pain (they have given me tramadol which I can only take on weekends due to the brain fog) and I also take regular Epsom salt baths and use a magnesium topical lotion.
What am I missing? Has anyone been through similar? What helped you deal?
Feel free to ask me any questions, I have all test results and will answer anything that might add more insight.