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Diagnosis results below, 27/F. Diagnosed ET by 2 hematologists/oncologists. Have had high platelets for years. Had DVT one month after meniscus repair in my knee 6 years prior to diagnosis. Met with Cleveland clinic specialist yesterday due to not being able to take HU so oncologist recommended second opinion with CC.
Biopsy I had in June from previous doctor stated the biopsy couldn’t definitively say MPN and diagnosis would need to be made based off findings from biopsy AND blood counts and symptoms. Oncologist agreed, ET. 6% Jak2.
This doctor I see yesterday starts saying the biopsy diagnosed CHIP. I questioned this as I’ve had diagnosis for years, symptoms and blood counts and tests point to ET. All research I read says CHIP would be normal blood counts, asymptomatic, and low percentage of mutation. Doctor said I would be in “grey area” between CHIP and ET. Also stated that even though I’ve already had a DVT, I’m not high risk since this was after a surgery. Also starting me on interferon since I have high platelets and am symptomatic.
Little confused after this. Even without having MPN, anyone having a blood clot once puts you at higher risk to have another the rest of your life. Any experience like this? Get another opinion?? Keep seeing this doctor?

Just out of curiosity, how many started hydrea and had to stop due to bad symptoms? My doctor says only 5% of cases have severe symptoms but seems more than that just based off posts on here

Does anyone have any experience going to MPN specialist/Malignant Hematology Team at University Health in Cleveland? Started hydrea in June, had to stop a week into taking it due to some very bad side effects. Currently hematologist said this is the standard of treatment and when patients can’t do this course, they refer out. I’m fine seeing someone else, especially because I’m not happy with my current doctor. But wanting to try to start in the best place possible. Not sure if University Health is as good as an option as Cleveland Clinic

Hello! I’m a 27 year old female, ET Jak2 positive. History of left leg dvt. This may be long, so apologies for that. Diagnosed completely with bone marrow biopsy beginning of June, but have known since about a year ago. Just recently start hydrea, on the night of the 23rd of June. Coming here because I’ve been dealing with some issues and getting no help…
On the 22nd or the morning of the 23rd, I began having this sudden back pain. Primary worst pain is a sharp, stabbing pain on my right side just below my shoulder blade. Pain travels sometimes to the left, a little lower, sometimes also have same pain on the left in the same spot, right In the middle of the back, but there is a constant stabbing in that one spot. Also experiencing chest pain and tightness (increased with heavier or deep breathing), feels hard to breath sometimes, feel like I need to take shallower breathes, dizziness/lightheaded, pain down into left shoulder, SPLITTING headaches (these will sometimes comes on violently then pass after 5-10 minutes). I can’t sit, lay, or stand comfortable. I toss and turn all night long bc sleeping is so uncomfortable.
Moving on from symptoms, I’ve been to the er twice and a NP once. Ct of chest and abdomen then said show no sign of pulmonary embolism, gallbladder issues, or appendix issues. No pneumonia. Literally one er doctor told me word for word “I don’t know what’s wrong with you but I know it’s not life threatening “. This same doctor I also had to explain my diagnosis to him, which he still wasn’t seeming to understand.
I’ve had most routine bloodwork, they did not run my d dimer factor. (This was tested on June 1 and was. <19)
From the er visit I went to on the 1st to the 3rd, my platelets went up 38,000. My white cells also went from 8.8 to 10.8 in the two days. Also had blood pressures of 146/89 150/77. Also abnormal ecg, but doctor never even brought that up.
Nurse practitioner and first er doctor said “they wonder if it’s stomach related” but I have no stomach issues except for occasional bloating (which coincided with my menstrual cycle). All of this being said, I’m still struggling. Pain is getting worse daily but I now feel I’ve lost all options and hope of it stopping or someone finding a cause. Thank you for advice and help.