Hello everyone! I just thought I'd share an introduction. I am Chelsea, almost 39 married with four kiddos (1, 6, 11, & 14). I have had high platelets since at least 2006. I did have two normal counts in 2005 but I was pregnant at that time which sometimes lowers them so we are searching for earlier medical records and hoping to find something in the military archives as I was an Air Force brat. I did feel significantly better when I was pregnant so I think it's possible they were high prior to my pregnancy and perhaps my lower platelet count helped rid me of symptoms.
I was unaware of my high platelet count until last July when I saw a new doctor for upper left quadrant pain. He assumed I was already aware but my previous doctor had never told me which is incredibly frustrating since I have been complaining for many years of fatigue, dizziness, etc.
Anyhow, because of the length of time that my platelets have been high my hematologist immediately suspected ET but he tested me for secondary causes. Iron studies have been normal, inflammation markers normal, ANA test normal, etc. I also went ahead and did some cancer screenings to be safe and they were normal. I was tested for genetic mutations and have been negative for all of them. Bone marrow biopsy noted absent iron stores (but anemia ruled out with repeated iron studies) and mildly increased reticulin fibrosis but was otherwise unremarkable. I did a trial of iron supplementing even though the hematologist thought it unnecessary and it had no effect on my count. The biopsy sample size was very small (half a centimeter) and I don't know if this would have affected the result.
Still my hematologist doesn't believe that I am reactive and he referred me to an MPN specialist. The MPN specialist also believes I have ET and he kind of dismissed the biopsy as non contributory. He is a researcher (Dr. Prchal at Huntsman Cancer Institute) and so is able to perform some type of clonality testing on my platelets and we are currently waiting for those results.
I'm nervous! I've done enough research on ET that I'm not especially worried about having it. I'm more worried about where to go from here if I don't. I feel unwell. Current platelet count fluctuates in the 7-800,000 range.
I look forward to getting to know you all!