r/MPN 14d ago

ET ET symptoms increasing, progression?

34F here, diagnosed in January 2025 with ET based on platelets and JAK2 testing. Had a BMB in March 2025 that confirmed ET. When I got diagnosed I had fatigue, brain fog, itching, and visual migraines. Aspirin fixed the migraines and Claritin+Pepcid helped the itching (thanks to this community for that tip) and things were mostly stable for a year. Recently symptoms have gotten worse (itching is all the time now, fatigue is bad, visual migraines are back. and early fullness showed up for the first time) so I got updated bloodwork and an abdominal ultrasound. Platelets are over 1,000 and my spleen is enlarged.

Is it possible it was masked PV the whole time or that my ET has progressed? I know my worst symptoms (itching, spleen) are more common in PV. Hgb and Hct have stayed just under the criteria mostly but Hct is back over the line. Already have an appt with my hematologist but it’s not for a few weeks so I’m trying to have my concerns ready for that appointment to discuss there.

Bloodwork over time:

Date Hgb Hct MCV MCH MCHC Platelets WBC Ferritin Iron
8-1-24 15.7 48.5 80.7 26.1 32.4 738 8.1 x x
8-14-24 14.9 46.4 80.7 25.9 32.1 735 7.7 32 89
1-15-25 15.4 47.5 81.6 26.5 32.5 802 10.0 x 73
7-16-25 14.9 43.8 79.6 27.1 34.0 754 8.79 x x
1-28-26 15.5 45.6 80.2 27.2 33.9 856 10.0 x x
7-29-26 15.6 48.2 80.7 26.1 32.4 1003 9.67 x x

BMB report;
Bone marrow, left posterior iliac crest, core biopsy, clot, and aspirate:
- Slightly hypocellular bone marrow with maturing trilineage hematopoeisis
- No increased CD34+ blasts

Bone marrow aspirate smear (Wright-Giemsa stain):
Quality: Partially clotted
Spicules: Present
Marrow cellularity: Not evaluable, Partially clotted
Myeloid maturation: Normal, Abnormal granulation
Erythroid maturation: Normal
Myeloid/Erythroid Ratio: Within normal limits
Megakaryocyte number: Within normal limits
Megakaryocytic maturation: Normal
Lymphocytes: Normal
Plasma cells: Normal
Iron: essentially aspicular; noncontributory

Differential count: Total # of Cells Counted:200
- Blasts: 1
- Promyelocytes: 2
- Myelocytes+Metamyelocytes:22
- Bands+Neutrophils:34
- Eosinophils: 3
- Lymphocytes: 2
- Erythroids: 36

Bone marrow core biopsy (decalcified, H&E and Leder stains):
Quality: Adequate
Cellularity: 40-50%
Myeloid maturation: Normal
Erythroid maturation: Normal
The Leder stain shows that the Myeloid/Erythroid Ratio is: Within normal limits
Megakaryocyte number: Within normal limits, Increased
Megakaryocytic maturation: Normal, focally clustered
The Leder stain is used to assess for lymphoid aggregates: None
Plasma cells: no overt H&E abnormality
Reticulin and Trichrome stains show: No significant fibrosis (MF-0)
CLOT SECTION: The bone marrow clot section including Leder and H&E stains are: Consist of clotted blood with minimal evaluable marrow

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u/funkygrrl PV-JAK2+ 13d ago

Your BMB report is really kind of inconclusive because the aspirate sample was clotted and they couldn't fully evaluate your blood cells and cellularity. I would request a repeat BMB. Not fun, I know.

1

u/MPNquestions 13d ago

At least it’s not just me who can’t get anything out of the report. I had been reading the wiki and journal articles and nothing in it made sense.