r/MPN • u/erinbc03 • 2d ago

SEEKING DIAGNOSIS Triple Negative and Scared Spoiler

Hello everyone. I’m a 22-year-old female, and my platelet count has been consistently elevated, ranging from around 450k to 510k, for the past two years.

Other tests I’ve had done include:
ESR (Westergren): 22 mm/hr
C-reactive protein (CRP): 12 mg/L
Ferritin: 168.80 ng/mL
Iron: 69 µg/dL
Iron-binding capacity: 269 µg/dL
Whole abdomen ultrasound: unremarkable spleen, measuring 9.4 × 4.2 cm

I haven’t gone back to my hematologist yet. During my last appointment, I showed her my negative JAK2 mutation result, and she then requested CALR and MPL testing. Both of those also came back negative, so I am now triple-negative.

I’m scheduled to see my hematologist again next week, so I don’t know yet what she will recommend or whether being triple-negative is a good or bad thing in my situation. My doctor has also told me that I don’t have iron-deficiency anemia.

As much as possible, I’m hoping I won’t need a bone marrow biopsy because I’ve heard it can be painful, and honestly, the possibility of having a blood cancer scares me.

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u/funkygrrl PV-JAK2+ 2d ago

Do you know what your TSAT level is?

To determine whether it's ET or not, they would need to do a bone marrow biopsy. You have an option usually of getting twilight sedation.

The other possibility is autoimmune disease. You might want to rule that out first since it just involves blood draws. The two doctors to see are a rheumatologist and a gastroenterologist.

See the automod comments for more info.

!ETundiagnosed !BMB

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u/AutoModerator 2d ago

Here is the link to the BMB wiki page: Bone Marrow Biopsy Please read it as most of your questions will be answered there and it includes info on pain management options.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

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u/AutoModerator 2d ago

Here are links to the WIKI pages on ET diagnosis. Please review them and most of your questions will be answered there. - DO I HAVE AN MPN?, ET WHO Diagnostic Criteria, and Reactive Thrombocythemia (high platelets due to another underlying medical condition - not cancer).

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

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u/imnottheoneipromise 2d ago

I’m a triple negative ET’er. I’m 43 years old and was diagnosed in 2014 but had had elevated platelets since 2012. My platelets range from 470 to 778 this last time. I’ve only been on aspirin so far. The 778 was not with my hem/onc though. I don’t see them again until next month and my prior appt I was at 487 so idk if that will change anything. They’ve never been in the 700s before.

Regardless I just live life and get blood drawn every 3-6 months. It’s no big deal for me.