Polycythemia: Primary or Secondary?

My new hematologist has not given me phlebotomy yet.

What's with your high WBC count? Were you sick?

The other (primary) numbers appear in line with mine post-phlebotomy or relatively shortly thereafter.

Yes, the high WBC certainly is a mystery. The other highs reflect polycythemia, but what is this? And you are right, both the high WBC and high RBC are important.

It is always hard to sit and wait. I prefer to think we are sitting and waiting for the situation to become clear rather than sitting and waiting for "something bad to happen."

Hang in there!

Yes, let's stay in touch. Take care!

Hi Buckaroobanzi!

Thanks for responding. No, I have never heard of anyone with polycythemia AND anemia. Interestingly, when I went to get a second opinion, the hematologist immediately said "you can't have polycythemia and anemia, its impossible". Here we are months later and she now agrees with the original diagnosis. At times my iron goes down to 7 -11. It was good on last lab (84). That's about 50% on scale. Iron saturation always low. between 18 - 30.
Both drs told me to never take any iron pills. My hematocrit on this most recent test is at 49.2. It has been a bit over 50 prior. She said she's not going to treat until it gets to 52. It has risen EVERY lab test I've received since mid January. Sometimes a little sometimes more. But always higher than previous test. Hemoglobin fluctuates but ALWAYS high.
I really appreciate your input and or thoughts. I'm not sure what I have or where to go or should I just do nothing. I uploaded picture of last lab.

Hi Just curious. I was diagnosed with Polycythemia and my father and I both have Thalassemia minor ... a different kind of anemia. Iron, I was told is not a positive thing for Thalassemia. Is that an anemia possibility for you? Please forgive me, I'm new to the polycythemia diagnosis and admittedly am ignorant about this whole process. So many questions. Thank you for sharing your experiences and being so helpful to this newbie.

Hi, sorry for such the long delay in responding. The Elysium is interesting. I did ask my hematologist about it. He said it’s usually found in babies as it is hereditary mainly. My anemia is affected by my hematocrit when my hematocrit is really high my iron numbers go up After a phlebotomy my iron numbers go way down. It’s like a catch 22 then when I get an iron infusion it raises my hematocrit. I don’t like this back-and-forth because it does not seem logical. I’m still struggling trying to find a MPN doctor in my area. Apparently they are few and far between .
Initially, before I was diagnosed with polycythemia, the hematologist thought I had bone marrow cancer. That was his first diagnosis until my bone marrow biopsy came back negative. The biopsy did show some abnormalities, but nobody seems to know why.
I hope this answers some of your questions, or maybe explains some things.