Platelets on the rise

[WileyFrench]

I’m ET, triple negative, and take HU alternating 500 and 1000 mg daily. My platelets have nicely stayed below 400 with that med for three years but in the last six months have climbed to 457. Sigh. I’ll be talking with the specialist next month but I’m wondering if this is common to folks here.

[hunter5582]

This is quite common. It is normal for platelets to vary by as much as 100k in a single day based on what is going on in your body. Platelets at 457 should not be a concern. Note that 450 is the criteria for an ET diagnosis. Also note that 600 is the cytoreduction target used by many MPN Specialists when they use a platelet numeric for ET. silvermpncenter.weill.corne...

So the bottom line is that unless you are experiencing increased symptoms, this fluctuation is likely nothing to worry about. I routinely cycled by 200 (500s-700s) for many years with no problem. My docs were never worried about it since I did not have any issues with thrombosis.

Suggest you review you concerns with a MPN Specialist. Man y hematologists are not up-to-date on the current state-of-the -art in MPN treatment. Just in case. here is a list..

mpnforum.com/list-hem./

All the best

[WileyFrench in reply to hunter5582]

Thanks for this, Hunter. I’m Canada the “normal” high for platelets is 400 for some reason. I am hoping to get a referral from my hematologist to one of the three Vancouver-based specialists as they’re the only ones, geographically, that I could see. Thanks again!

[hunter5582 in reply to WileyFrench]

"Normal" actually varies from lab to lab. 400 is pretty common. Platelets>450 is the WHO criteria for thrombocytosis.

Regarding the referral to a MPN Specialist, Yoda says "Do or do not. There is no try."

Per Yoda's advice - Do not try to get a referral, do it!

All the best.

[CAOR]

I've experienced this as well and my doctor says that it is nothing to be alarmed about. Platelets vary as hunter5582 also said. Best of luck to you!

[WileyFrench in reply to CAOR]

Thanks for that — and my fingers are crossed that both you and I stay healthy — even with the occasional “blip”.

[CAOR in reply to WileyFrench]

Me too! Thank you!

[CalL1981]

Hello WileyFrench . Can I ask what your platelet count was when you were first put on HU?

[WileyFrench in reply to CalL1981]

Hi CalL - my platelets has risen over a couple of years into the mid-700s. Then the diagnosis was made and I stared HU, after which the platelets came down below 400 and stayed there. Until very recently. I’m hoping this rise is just a “blip”.