Plz read - ET progressing after 7 years?
Diagnosed triple negative at 25 years old- now almost 33. Took extensive testing to get it in 2018- even had my blood tested by the Mayo Clinic, or John’s Hopkins, (can’t remember which it was), to detect for the tiniest amount of leukemia and it all came back normal!
I did everything but a bone marrow biopsy (can’t even begin to describe how much I don’t want to do one, bc it freaks me out in ways I can’t explain) and the dr that diagnosed felt it wasn’t necessary after the extensive tests we ran- because all it would do is confirm the triple negative ET.
Platelets were only mildly elevated around the 500s-550s this entire time, even through an extremely medically complex pregnancy last year, they never spiked. Latest labs are showing 689,000 which is higher than they’ve ever been, and I was just tested 3 months ago. They were in my “normal” range so it was a sudden increase.
Testing again today to recheck but not with a hematologist yet as I’ve recently relocated out of state. I pay out of pocket monthly for a primary care dr I can see anytime I want. Problem is, I’m having to teach them about MPN/ET, and want to make sure I’m not missing something I should bring up that you guys may be more aware of. I can request any labs or tests I want and even did dimer to confirm I wasn’t clotting bc recently I’ve had chest pains off and on, tachycardia (resting hr in high 80s and 90s) back on labetalol to help w it and mild hypertension after preeclampsia 10months ago.
If you had something similar or any advice I’d like to hear from you even if you were diagnosed at a more normal age for this. Any and all advice or personal experiences are welcome.
Thank you so much!
*** editing to clarify: I have seen 3 MPN hematologists/oncologists - I just don’t currently have one since recently relocating. I’m not self diagnosed, not guessing, and confident that after 3 drs we got it right. Simply asking if anyone else has had a similar experience not looking to debate my diagnosis.