Hi Carol, My blood work also showed a false very high level of potassium. My PCP had my blood retested with the same results. She sent me to the ER and after 11 vials of blood the ER doctor said my potassium was normal and the paper work I received said my diagnosis was Polycythemia Vera. It didn’t mean anything to me at the time and thank goodness I didn’t Google it and see the word cancer. My PCP said she had never seen blood work like mine and she referred me to a hematologist/oncologist. This was three years ago. It was confirmed that I have the JAK-2 mutation. I now take Hydroxyurxea and low dose aspirin. I am grateful for that false high potassium level since my PCP wasn’t doing CBC tests and I would not have been diagnosed with PV.

Go back to the doc who suggested Hydrea. Taking this med will stop the downhill slide. Glad you are open to getting this done. Nothing and I mean NOTHING will take the place of competent medical help and regular blood labs. You owe it to yourself. I know it's normal to "research" on the internet, but you can go down a black hole or convince yourself that it's nothing. Go to only reputable sites like Mayo Clinic and Cleveland Clinic and pump in your questions. Anyone that tells you 690,000 platelet count is nothing to worry about should have their medical license jerked away from them. Good luck. Take the initiative and help yourself in the best way possible.

It all started when I asked for a second opinion from an MPN specialist out of network and my insurance denied it. So I started researching treatment on my own for my ET/CALR. I was getting mixed messages from the hematologist/NP I was seeing. I saw two. One said I was low risk and the other one said intermediate risk. One recommended aspirin only and the other one recommended Hydrea. That’s when my questions started about medication. I’ve never had any major problems before this and it was all foreign to me. Although, I am seeing a Hematologist MD as of today. I also started taking Anagrelide last night. I guess you could say I was very confused about this rare disease. I did learn a lot from researching but it was also very stressful and delayed treatment. I appreciate your opinion. Thank you! Sometimes people need to hear reality when they could be in denial.

Take Hydrea or whatever your doctor has prescribed. You can ask your doctor or ask people here which is not advisable. I am really puzzled by people taking aspirin and thinking that's the cure. You have a serious condition; why are you just taking only Aspirin? You need to get with the program and do it sooner than later. When it goes to your bone marrow, that's even more serious. You know you are having increased and worse symptoms, yet you are asking people here, rather than seeking the medical attention you know you need. Why is that? I know I'm being harsh, but you are complaining of symptoms worsening and then mention you are only taking Aspirin.. I have been on Hydrea for 18 months. No side effects and I feel great. You choose; it's your life. What do you want to do with it, Agape?

I agree with you ConnieR, we have to advocate for ourselves. And Drs should take high platelet counts a lot more seriously than they do. Sending prayers your way! 🙏🏼