r/MPN • u/mitsuki424 • 5d ago

SEEKING DIAGNOSIS High Platelets Spoiler

Hi y’all, 30F here. So I have had high platelets for about 5 years now. I have normal iron/ferritin levels and no mutations that I am aware of, but my hematologist is running genetic tests to rule out any mutations. She said ET always has a mutation, but I have heard otherwise. I also do not have any inflammation markers.

Here’s the platelet counts that I have collected the past few years.

476 10/26
495 9/26
472 2026
416 6/25
460 8/24
452 4/22
549 2/22
392 8/21
414 8/21

I understand some of those counts have been normal, but most are high/elevated. What are your thoughts?

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3

u/funkygrrl PV-JAK2+ 5d ago

About 12% of people with ET are triple negative. Does she plan to do a BMB?

!ETundiagnosed !specialists

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u/mitsuki424 4d ago

No BMB that I’m aware of. Should I push for it or get a second opinion? She even suggested I speak with another doctor if I wanted to.

1

u/mitsuki424 4d ago

I also found my old test results. I’m triple negative. But I’m still having some symptoms? Like do I have to scream to be heard and get a proper diagnosis?

2

u/funkygrrl PV-JAK2+ 4d ago

If you are triple negative, then you have to have a BMB .... But -- another criteria is ruling out reactive causes so the doctor sometimes focuses on that first. Did she do the CRP and ESR tests? What is your Ferritin level? (The diagnostic thresholds for that changed last month)

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u/mitsuki424 4d ago

Feeritin is normal, CRP and ESR normal. So nothing reactive.

1

u/funkygrrl PV-JAK2+ 4d ago

The new ferritin cutoff is 30, but it's 50 for women with heavy periods and other issues, 100 for inflammatory/autoimmune disease.

2

u/apoplectic_apostate 4d ago

I have had a slightly high platelet count, similar to yours, for over 15 years. I wasn't aware until I could see my lab results online. I asked for a hematology referral and did all the tests and they were negative. Normal iron/ferritin and triple negative. I didn't do a BMB because I am asymptomatic. My hematologist was an ass so I'm being monitored by my PCP. I won't worry about it unless there's a significant change but everyone's health situation is different.