PLATELETS- PV

Hi everyone... again diagnosed with PV 2 years ago ... had my monthly blood test today and hemoglobin and hematocrit high normal but platelets higher then they’ve ever been at 687 ... high normal is 450... is this high enough for me to be really worried ??? Supposed see hematologist next week. ... should I be calling him before then about this ??? Just want your experiences with platelets.

Thanks !!

[Chaz1]

Hi, my hubby started with high platelets then had higher red cells & haemocrit. It's not unusual to have PV & high platelets. They aren't drastically high & they can cycle down lower quite quickly so you are most likely to be asked to have another test in about 4-6 weeks to see if they remain. Hubby in the last few months has been high on everything & we thought it was time for meds but a few venesections & he's back to his normal so don't panic if high a couple more times. If you are having venesections as treatment this will naturally push platelets up as the body thinks you have a cut that needs to be stopped so is in a natural way reacting to it. Generally they don't tend to react too much till platelets hit somewhere aroubd 1000 - 1500,depending on consultant. I expect they will just monitor a bit for now rather than reacting to it. Platelets can go up for many reasons, stress, illness etc... Stay safe

[revfee]

My PV has always presented with platelets involved as well as red cells so I don't have venesections. They try to keep them below the 400 mark, partly because I have had clots. But as others frequently say, one result could just be a 'blip'... I suspect your consultant may want to repeat it reasonably soon, but if you have an appointment next week I wouldn't panic call right away... unless your haem has suggested in the past that you should.

[Susana7]

Hi, I've had PV with high platelets since 2014. My platelets went as high as 1.5 million. At that point I started treatment with Pegasys interferon (in 2015) and all counts normalised within a year. Pegasys has worked wonders for me. I currently inject a small dose 45mcg every two weeks only. So there are effective treatments available. Good luck! Susana

[hunter5582]

It is not uncommon for erythrocytosis to be accompanied by thombocytosis in PV. Some people also get leukocytosis. Platelet levels can cycle up and down by 100K in a single day. There are a number of things that can affect platelet levels (bleeding, inflammation, injury, illness, etc.) A single high read is not something to be concerned about, just something to monitor. If the trend towards thrombocytosis continues, then it could be a sign of MPN progression.

My own course went the opposite way. I was diagnosed with ET over 30 years ago. Platelet levels cycled between low 500s to mid 700s for decades. About 7 years ago, I started showing erythrocytosis and it became clear I had progressed from ET to PV.

Platelet level at 687 is not particularly risky providing your erythrocytosis is under control (HCT<45%). It is actually the elevated erythrocytes that put you are higher risk of thrombosis than platelet levels. As you monitor this, do also be aware that it may actually be your risk of hemorrhage that increases at higher platelet levels.

For now, it sounds like a wait and see approach would make sense. Hope you get answers soon. Meanwhile, suggest not worrying about it too much.

All the best

[Mpncoda]

Not sure if helps, but my hematologist said my platelets were not sky high at 698 so he still has me in aspirin but no medication- although he has reco a phlebotomy cause me HCT is high.