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Data,
When I was diagnosed 5 years ago, my HGB was hanging out at around 12.5 to 13.5, WBC was completely normal, and platelets were really low at 20k to 30k and stayed there for about 4 years. Even though my HGB levels dropped from 13.5 on the high end to about 9.5 or 10, my energy levels didn't drop as much as I expected. I would frequently have bouts where I felt like getting back from emptying the trash was more like a jog than a few steps, and other times where I felt perfectly normal. Taking out the trash literally could be a heart-pounding event.
Although it is only an observation, when I went through transplant, it seemed that white blood counts had a lot to do with energy levels as well. One measure of recovery during transplant is marked by WBC engraftment and the changes i experienced as WBC counts recovered was remarkable.
Not sure if everybody else has experienced it, but it is a working theory that I have and am still watching 1 1/2 years after my transplant. I am thinking that the low energy swings could reflect low level infection that isn't necessarily showing up easily and is depressing your immune system, causing a drag on everything else.
Long post for a simple thought, but I think that you are pretty analyticial and might see a correlation for your situation.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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