I am 65 and diagnosed with ET/Jak2+ in February with platelets at 924.
I have been on Hydroxicarbamide (x3/day) and asprin until last week when haematologist reduced them to 2x/3x on alternate days. Platelets now 171. Reds gone from 4.91 to 3.26, haemoglobin 140 to 118 and whites 8.46 to 4.54
Any way - the point of all this is that I was sitting at home last Thursday morning, when suddenlt felt very clammy and thirsty. Got up to get water from fridge and collapsed back onto the kitchen table. Passed out for a few minutes. Ambulence were very prompt and taken to hospital in case I had had a stroke/TIA, but not. Had ECG, bloods and chest xray and the only sign they could find was the difference in blood pressure between sitting and standing was a fall of 20 (systolic, the top one). This has since gone down to about 10, but there is no doubt that my blood pressure dropped rapidly last week causing my faint.
Has anyone else experienced this? is there a history of HU causing hypotension? Is the fall in reds/haemoglobin significant? The haemotology team did not seem very bothered when we rang them the next day, but my doctor seems more concerned. Any help/thoughts very welcome.