high platelet’s

[Twinnotes]

For those who have elevated platelets, is that the only thing in your blood workout of range? For those of you who were diagnosed with ET with mutations, how high were your platelets initially for them to do further investigation?

[Pounds11]

mine were 640. Everything else was good in range.

[Twinnotes in reply to Pounds11]

have you been diagnosed?

[Mostew]

I had platelets at 700 before I was tested . All other bloods OK apart from low D and ferritin .

[dbus1417]

All bloods in range at time of diagnosis. Platelets at 620 and have only gone up since then (a little more than a year.) Still currently all bloods in range with exception of platelets at 1M. 39 y/o male CALR ET. Aspirin only.

[Twinnotes in reply to dbus1417]

Everything working out with just aspirin?

[dbus1417 in reply to Twinnotes]

I feel normal overall. I do have some symptoms that could be my ET but I have been exposed to several seasonal viruses due to my small children. 😬😆

[Roxy1959]

Hi my count was just over 600 all other bloods ok was put on aspirin and monitored for when platelets rose to 1300 it was time for medication to control it.

[Wyebird]

I was lucky mine were below 600 and only spotted by an A and E consultant. He stressed they were too high because I’d had a stroke in the past. Prior to that they were missed by at least 4 doctors!!!

I actually went back to A and E to thank the doctor concerned but he’d moved away.

[Capetranquility]

When I was first diagnosed my platelets were 673 and also the following:

Segs Absolute H

White Blood Cells H

Segs Relative H

Lymphocites L

[Twinnotes in reply to Capetranquility]

I hope you got it all straightened out and you’re doing well.

[dancingfiend]

Platelets were just under 900 when discovered by chance at A & E. GP had totally missed escalation for 4 years ... at one point up to 1043! A & E consultant referred direct to Haematology and learned within 3 weeks that I had a diagnosis of ET JAK2 positive.

Owing to my age (71 at the time) I was almost literally bombarded with Hydroxycarbamide and platelets reduced to very acceptable level within 2 months. Also use daily dose of aspirin. Now on 8 capsules Hydroxycarbamide per week for maintenance. Have had two 'blips' (once when I contracted Covid which caused a small rise in platelet level; and then, this summer, too much codeine for crucifying back pain seemed to cause a noticeable rise in platelet level - 'wait and see' without increasing drug dose solved the problem).

All other blood results remain within acceptable range.

[Twinnotes in reply to dancingfiend]

So glad they found it and you are doing well!

[abuf]

CALR positive here, 53 years old male, platelets hovering around 1 mil mark for 12 years, only on aspirin. Everything else well within range, except increased LDH, which doesn't seem to concern my haem (he uses to tell me that my bloodwork looks better than for most of "healthy" people....)

[Whitegate]

In 2021, a routine pharmacy check showed my wife' s was 1140. 500mg HU daily got it down to 550 in 12 months. Blood test next month.

[mbr8076]

I was diagnosed ET Jak2 + in 2018 at age 59 following a mild heart attack and my platelets were at 1M. Treatment followed with Hydroxyurea 500mg 1/day then Dr added another Hydroxy M-W-F and platelets came down to mid 300’s. But, since 2020 the platelets have been rising slowly. I am under an MPN specialist now and my recent blood labs my platelets were at 558. She is not concerned but I am a little esp. since I had a heart attack almost 5 years ago. She stated she is not against me upping my Hydroxy but why put more toxins in my body if I don’t have to. I am trusting her not being concerned about my platelet level.

[FG251]

My platelets were (roughly) between 590 and 680, JAK2+. In my diagnostic work-up I also had mild eosinophilia on one of the three blood tests, but that resolved itself. HU for a year brought platelets down to 230-ish, but also my Hgb to 132, and I think that was the cause of awful fatigue. Now, almost a year on PEG, my platelets are at 291 and Hgb at 152 - I feel as fine as wine. Long may it continue!

[Solyesh]

Diagnosed after years of high platelets - about 6 years of rising platelets from 500 to 900 before BMB confirmed diagnosis - Et Jak2+ - initially on aspirin and watch and wait - platelets hit 1.4M and started HU - did not tolerate well so switched to Peg - initially platelets and WBCs were high everything else in range - now WBCs in range and platelets at 550 (more or less steady) - my MPN specialist and I are fine with platelets at that level - will see if Peg continues to reduce them over time.

[Margaret2022]

Mine was 840 just waiting for my first consultation since starting the tablets

[Margaret2022 in reply to Margaret2022]

On Hyrdo and ache in all my joints as I have had to stop taking turmeric. Also I get so tired

[gilded]

My platelets were originally 1600.

[Minu68]

other than platelets, my neutrophils, basophils also above reference levels. Consistently have inflammatory issues, and they have remained above levels regardless of Hydroxy. Platelets mostly within range now, for the last year

[Jynx93]

I’m ET Jak2+ and my platelets were 548 with high white cells. Put straight on Peg and aspirin as I have a history of blood clots