Hi David
This is my very first post to this forum
I am on a very similar journey as you are..... only mine has begun much more recently. In November 2014 my routine blood work came back all out of whack. My primary care physician called me the very same day and requested I get retested (to rule out lab error). The repeat tests came back worse (not surprising as they pulled another 4 tubes out of my arm within a 24 hour period!). My CBC showed:
RBC 2.87, WBC 2.6 (with low neuts and lymphs), hemoglobin 10.4, crit 32.1, MCV 112, MCH 36.2, platelets 104
I was otherwise in the best health of my life, having spent the previous two years working out and eating right. As far as I know, my previous blood work (a couple years prior) was 'normal'. My doctor repeated the CBC, chems and added several more tests over the next 3 months but no change and no smoking gun. She was stumped and referred me to a hematologist who then ran a bunch of tests as well. Since then I have done repeat CBC's, blood chems, and bone marrow biopsy and study of the peripheral blood (flow cytometry) which showed a small, 1.3% erythrocyte and 1.3% granulocyte PNH clone. My LDH and haptoglobin remain normal. My doctor has checked my ferritin, serum folate, B12, vitamin D, TSH, reticulocyte, iron binding capacity, hepatitis, immunoglobulin A, M, and G, ANA, globulin, ..... all came back within the normal range.
The findings have not given any real answers. My platelets have fluctuated between 90-68 while all the other values have remained in the same relative ballpark.
My hematologist put me on iron, B12, and D.... and told me to stop drinking alcohol (yes, I miss my wine). I get my blood tested every 3 months (every 6 months for the PNH) and each time hope for better results. I have done everything my doctors have instructed yet my numbers remain as they are.
I came across your post last night and I admit it was somewhat comforting to read your story and to know I am not the only one. I am trying hard not to let this control my ongoing life, but sometimes find it hard because no one around me understands. I feel like a ticking time bomb.... and it frustrates me because I am the type of person who likes to "fix" things. I am open to any and all advice as I am a proactive person.
I appreciate having a place to share, to learn, to feel like I am not alone.
Kathie