Had my latest clinic appt and although platelets down from 836 to 684, my RBC, Hb and PCV continue to climb! I was diagnosed with ET (only on aspirin so how can my platelets have dropped by that much ?) but there is suspicion that may have changed to PV. I will probably have to gave another red cell mass test (had one last time they thought may be PV but all normal!) after my next appt to give them more info. All very confusing really !
Anyone else had similar experience?
Hello. I recently went through quite a similar thing.
I was diagnosed with ET last April, and as I am low risk I too was just on aspirin. My platelets gradually began to climb for a while unit I reached 1400, then suddenly dropped to 1200 and my RBC and HB and gone up dramatically, despite being normal for almost a year.
It isn't unusual for your platelet count to go up and down, my haemotologist always says that if he took my blood in the morning and then again in the evening, he would get different results.
Following from this, I had a bone marrow biopsy and a red blood cell mass taken which confirmed that I had PV.
It hasn't changed my life in the slightest. I still only take aspirin and had my first venesection last week that wasn't entirely necessary but more a precaution.
Good luck with your red blood cell mass, I hope you get some answers soon.
Thank you for your reply.
Glad to hear that I am not the only one experiencing this!
I am guessing you are at the younger end of the spectrum too ?
They thought I might have PV before, but red cell mass test said "no", so we will see.
Full blown PV now
Eye floaters
ET or PV
1st visit to Nurse specialist after starting Hydrea
High Red blood cell count
