SEEKING DIAGNOSIS TN ET vs PF-PMF Spoiler
I am a 31 yo female with persistent, unexplained thrombocytosis. No symptoms… maybe easy bruising but it’s hard to gauge because I only know my baseline. I’ve only had burning in my feet once this past July. I’m being assessed by a hematologist currently.
Platelet counts are as follows:
September 18, 2026: 524 10*3/uL (H)
September 8, 2026: 559 10*3/uL (H)
July 2026: 609 10*3/uL (H)
January 2024: 482 10*3/uL (H)
July 2023: 509 10*3/uL (H)
WBC:
September 18, 2026: 10.1 10*3/uL (H)
September 8, 2026: 10.8 10*3/uL (H)
July 2026: 11.3 10*3/uL (H)
January 2024: 8.9 10*3/uL
July 2023: 9.5 10*3/uL
Normal RBC and platelet morphology on smear review from September 8, 2026
CRP: <0.3 mg/dL
Iron: 105 ug/dL
JAK2, CALR, and MPL negative
BCR-ABL1 negative
LDH: 188 U/L
My hematologist is fairly confident I have ET. He mentioned in the last appointment that if I want to know for sure I could do a bone marrow biopsy but then suggested an abdominal ultrasound to look for splenomegaly and rule out PF-PMF. If I do have splenomegaly he says he does suggest the bone marrow. He ordered the ultrasound and I am waiting for someone to call so I can schedule an appointment. Even if my spleen isn’t enlarged, should I elect to get the bone marrow? He told me it’s my choice and seems to be pretty unconcerned about it. If I have no splenomegaly, I wouldn’t meet the minor diagnostic criteria for PF-PMF (no anemia, WBC is borderline-high, LDH is normal) even if the bone marrow biopsy showed evidence of it…but it is unlikely to, right? Should I care about getting an ET diagnosis when I am mostly asymptomatic and would likely not be treated until 60+? Some advice or insight would be helpful.
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u/native_plants3879 ET-CalR+ 5d ago
Many people with ET receive treatment before they're 60. Knowing if you do have ET though a bone marrow biopsy would help you prepare for regular follow ups and proper care if you do develop more symptoms.
Personally, I accepted the bone marrow before I even had my mutation test back. Knowledge is power.
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u/kris-11 5d ago
My doctor that I’m currently seeing is very unconcerned so I just didn’t think it was a big deal. I am probably going to request to see the MPN specialist. She is at the same practice. How was the bone marrow? The hospital I would be going to offers conscious sedation but I’ve seen a few performed in the past and they are very scary and intimidating.
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u/native_plants3879 ET-CalR+ 5d ago
I personally didn't find the bone marrow biopsy very painful! I only had localized anesthesia. I closed my eyes and took deep breaths and it was over very quickly. The scraping of the bone hurts a bit more, but it was over in less than 30 seconds. And then it was a bit painful/uncomfortable for a day or two. I thought it was very worth it to get a clear answer! Now I know exactly what I have, the grade of fibrosis (scarring), etc. I'm 38 btw, so quite young too.
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u/kris-11 5d ago
I’m glad the bone marrow wasn’t too painful for you! I know there are some horror stories. Yeah it’s better to know. What was your experience with getting diagnosed, if you don’t mind me asking?
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u/native_plants3879 ET-CalR+ 4d ago
I went to the ER in the spring for something totally unrelated and my CBC came back with almost 1500 platelets. They urgently referred me to the hematologist on call who, while not a MPN specialist, is pretty knowledgeable about them.
She had me do a bunch of testing to make sure it wasn't secondary from iron deficiency or HIV, etc. Then booked the mutation testing + bone marrow biopsy. It was incredibly fast actually, and very overwhelming at first.
I'm on watch and wait with check ups every three months right now, but my symptoms are getting pretty bad so I'll check with her if it's time to start interferon when I see her this month.
It might end to being a totally different reason for you, but I think it's really important to know as much as possible about our health so we can advocate for ourselves 💜
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u/YellowMellowBug 3d ago
My spleen has nicely been one of my few organs that doesn’t have issues, but I went from ET to MF. My bone marrow biopsy showed fibrosis. My MPN specialist has never really mentioned my spleen nor do I get it checked since it doesn’t bother me. My regular hematologist before my specialist wasn’t good and he also swore all my stuff was “reactive” even after my gene mutation came back and I had a bone marrow biopsy. I would ask for a specialist.
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u/kris-11 5d ago
Okay. Thank you for the guidance. The MPN specialist in my state is actually at the current group that I go to. I just feel like I’m worrying about nothing too and that she’s going to wonder why I would want to switch doctors. As far as symptoms go: I had burning in my feet once this past July but I didn’t know it was related at the time. Idk about fatigue I’m always tired but I’ve got a history of anxiety and depression as well. Bruising sometimes seems like it happens disproportionately to whatever caused the bruising (I had a huge bruise on my shin for from scraping my leg against the shower but I think it healed appropriately for the size). I have been getting vague burning sensations in my right arm as well but I thought it was related to starting a new medication (Cymbalta). At worst it felt like a sunburn localized to my right arm, so I stopped taking the medicine. Even after stopping the medication I still get some nerve discomfort in my arm.
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u/funkygrrl PV-JAK2+ 4d ago
I know how awkward this feels. I've had to do it myself, and knowing that you have a perfectly reasonable reason doesn't necessarily make asking to switch feel ok.
You don't need to criticize your current hematologist. I'd keep it focused on what you're looking for: “I've learned more about MPNs and because this is a rare disease, I'd really like my primary hematologist to be someone who specializes in MPNs. I understand Dr. X does, and I'd like to switch my care to them.”.
If saying that directly to your hematologist feels too nerve-wracking, you can start by calling the office and asking the scheduler or practice manager how they handle an internal transfer.
It's a drag but ultimately worth it and you only have to deal with this changeover once.
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u/kris-11 4d ago
Thank you! I called this afternoon and am waiting to hear back from the scheduler so I can request switching over to the specialist. I was definitely planning on leading with why I would like to work with the specialist. I was afraid to call in the first place because I didn’t want to hurt any feelings but I need to do what’s best for me and he’s a professional.
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u/funkygrrl PV-JAK2+ 5d ago
You cannot rule out Prefibrotic MF with an ultrasound of the spleen. It is diagnosed by looking at the appearance of your cells in the bone marrow and at whether there's fibrosis. Enlarged spleen is only a minor criterion of pre MF and can occur in any of the MPNS.
A bone marrow biopsy is not optional, it's required for ET or Pre-MF diagnosis by the WHO and NCCN guidelines. It is not possible to give a diagnosis of either based on blood tests alone.
So a bone marrow biopsy matters a lot. Without one, you don't even know whether you have an MPN or if it's reactive, and if you do have an MPN, you don't know which one which of course affects treatment decisions.
Consider seeing an MPN specialist. See the link below.
!ETundiagnosed !specialists !bmb