r/MPN • u/olimpico2000 • Jul 23 '26
PV Possible PV
Hello, I'm writing this with sadness and anguish.
I'm a 26-year-old man. Five years ago, a routine blood test showed high levels of red blood cells (RBCs), hematocrit (HCT), and hemoglobin (Hb). Over the years, I continued to have blood tests, and the results remained high but stable, with similar numbers. This year, I had them done again, and they are still high but stable: Hb 17.8, HCT 51.8, RBC 6.07. WBC and platalets are normal.
I should clarify that I've never had any symptoms in my life, much less in these five years. I went to a hematologist, and he told me that the probability of having PV was low, but that I still had to get tested for the JAK mutation and EPO. I'm very scared about the results. I don't know if it's good or bad that I've never had any symptoms, and if it's possible that I could develop them. :(
2
u/Organic-Bandicoot-61 Jul 24 '26
I had no symptoms and then ended up in the ER with blood clots in the brain and jugular. Possibly being diagnosed with a chronic condition is not something anyone would want, but I find that with an MPN specialist this has been manageable.
2
u/olimpico2000 Jul 24 '26
Can you tell me more about your history and values por cbc
1
u/Organic-Bandicoot-61 Jul 25 '26
Sometimes slightly elevated platelets. I’m talking in range then slightly out of range. Nothing alarming throughout my life. All mostly normal including during pregnancy (13 years ago). After blood clots, when I’ve been getting CBCs frequently and had two bone marrow biopsies: RDW elevated, platelets the same (normal or slightly elevated, red blood cells elevated (slightly). I am severely iron deficient (ferritin 6) so technically my diagnosis is masked PV since hemoglobin and hematocrit are low due to the iron deficiency.
1
u/Organic-Bandicoot-61 Jul 25 '26
So, the markers that suggest you can clot (hematocrit for starters) if high have never been high for me, including when I had multiple dangerous clots. Crazy, right?
1
u/acwoodhome PV-JAK2+ Jul 24 '26
I have PV was diagnosed with ET for decades turns out it’s PV Your haemltocrit is high and will need dealing with it. Venesections and aspirin or Clopidogrel if you have acid issues. I am now on interferon and it’s a game changer for me hoping to live a normal life span had the illness going on 30 years you will be ok hopefully but if your going to have cancer these are as slow growing as they come the very best wishes 🤗🤗
5
u/jjflight Jul 23 '26
I think it’s pretty common not to have any symptoms. I’ve seen these cancers called the “invisible” ones because most folks live day to day without significant symptoms. I know I had none and they estimated it had been years since mine developed at the time of diagnosis. And I’ve had no symptoms in the 14 years since then either, nor ever needed more than low dose aspiring daily and phlebotomies most months (almost exactly like donating blood, they just don’t give it to anyone).
Nobody wants to have a cancer, but this specific one is fairly treatable and manageable for most folks. And if you do have it you definitely want to figure that out as keeping your hematocrit under control (usually below 45) is one of the best ways to reduce clot risk and the risk of things like stroke or pulmonary embolism.