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.
Hi! I'm impressed by what you say and the level of care that you have received.
There are quite a few of us who cannot manage on even 1000 mcg (1mg) hydroxocobalamin every other day and need much more than that before we get any improvement.
For the last 3 years I have used stronger 1.5mg in 1ml Pascoe brand ampoules for my every day injections and I know of several who need two jabs every day to give them either 2mg or 3mg hydroxocobalamin daily. There are some people who have successfully been on daily jabs for decades.
If our B12 is ever tested it's off the scale and the health professionals are convinced we are killing ourselves and should have died! No one can explain how come that's the only way we can not only survive but actually minimise the symptoms and continue to improve, with slow but steady improvement of our neurological damage.
Most of us need unfeasibly large amounts of the supporting supplements too. I need beyond theoretically toxic levels of most things every day just to stay alive and even more if I want to continue to improve. If anything upsets my intake of the other supplements all my B12d symptoms return and I struggle to survive... But as soon as I can get my levels up again I'm able to live nearly normally!
I'm sorry this is all anecdotal but it doesn't seem that there is much hard copy information available. The information leaflet with the ampoules does mention every day injections so the pharmaceutical companies must have done some trials work on it and have some knowledge but I haven't been able to get access to it.