Dear Maggs,
i was informed that doctors check to see if your blood PLATELETS, AUTOMATED COUNT is between 150 - 450 K/uL. A higher platelet count and other test conducted through a blood test demonstrate if you have polycythemia. Hope this help. God bless.

I was diagnosed with PV three years ago; I am 29 now. The only issues I've had is with child birth. I lost a baby at 30 weeks and then another one at 12 weeks due to blood blots. I also had several other complications with the post-pregnancy that included blood clots. Other than these sad tragedies with my pregnancies, PV has just been something doctors say I have. (I have the Jak2 mutation).

Hi i was just diagnosed as well with polycythemia. True its manageable but no cure. I am on facebook and there is a page called polycythemia vera support group. I urge you all to go and join it. There are all kinds of polycythemia and pv paitents on there. You will find they are the niceest people ever. And they have given me support and great info. This disease is very complicated and frustrating. The symptoms can be horrible. The itching alone drives me crazy. But we all have very LONG roads ahead of us. The best thing is to have support and family and friend to support you. They will be bumps along the way and your families need to educate themselves with everything that you will go thru. And understand the symptoms. Because the symptoms get worse at times. Like today i have had nausea and a headache all day i hurt in my back and hips. You will have good days and bad. But hang in there and keep researching and keep your head high. God Bless you all.

Also just to add i am about to go back to the dr in a few wks. They told me i may have a diagnosis of polycythemia vera my bloodwork is not getting better just creeping back up. And i will have to have a test done for Jak2. Im bruising easier and bleeding from my gums worse than before. I just had another CBC done and a B12 test. But i have high hopes. Keep me in your prayers.

Hello everyone , I myself do not have polycythemia, but my 23 year old brother has it, along with Budd-Chiari syndrome caused by a blood clot in his liver. He has been going to a great doctor at the Cleveland clinic, his diagnosis was made right before he turned 20. I joined this support group because it has been a huge adjustment for him and our whole family. Please message me with any questions, we have been through the ringer with this unfortunate condition and i know Every treatment and medicine he has/is taking. Don't give up hope!

I also have this disease and am in the very beginning stages. I have cut back on my Vitamin C as it enables the absorption of Iron in my blood. I have completely cut back on my iron in food. Read every label before I eat it. I take Calcium as it inhibits absorption of iron to the blood. Eat a healthy diet and get mild exercise, walking, swimming every day to keep my blood flowing. This is how we can help ourselves. Then, we need to trust our doctors and live our lives fully. And pray daily. It works.

Hi Maggie I was just recently diagnosed with polycythemia I'm 57 years old and it's not easy not to worry but it doesn't help the situation they say it is not curable but it is treatable other than slight aches in my bones mild headaches and some itching the doctor takes a pint of My Blood each week although he wants to take to this week to see if you can lower my number some more they currently sit at 55 if this helps good luck in my prayers are with you too

I apologize for not being in contact in so long. I was using a different email. I would suggest that you do your own research. Read books watch videos and join a forum of other people who have been diagnosed with your condition. I almost died if severe a plastic anemia. I survived the transfusion stage although I am not fully recovered. Never lose hope. I can speak to you via Skype if you'd like. Just email me at survivor1@outlook.com to let me know what a good time is.