No reason for Elevated RBC

[Cali-Med]

My RBC, hemoglobin, hematocrit are really elevated but my bone marrow biopsy was negative as was Jak2. I’m scared because my Hemotologist doesn’t know what the cause. Does anyone have ideas?

[fee13]

Could be secondary polycythemia which is not associated with an MPN. You may need to google what causes this but don't take the information you read as an answer as there are so many other factors that can influence high readings. Just use the info as a general idea.

[fee13 in reply to fee13]

Also search this site for secondary polycythemia posts as there are a few people that have been diagnosed with this and can give ideas.

[Cali-Med in reply to fee13]

Thanks, I will. I noticed my hemoglobin and RBC have dropped to normal range since taking aspirin. My hematocrit is still high.

[Ethicalthinker]

Hi dear I have the same issue what you have my Jak2 and Bone marrow biopsy results are negative but still, I have the issue with HB and RBC this is due to Secondary PV this pv can also prove dangerous in the form of stroke or blood clots I hope you're taking aspirin for this! Your EPO and BCR-ABL1 test has been done? Or not!

[Cali-Med in reply to Ethicalthinker]

Hi, My EPO was low BCR-ABL 1 negative. Do you know what yours is? Secondary PV means something else is causing it, right? Thanks for info on aspirin.

[Ethicalthinker in reply to Cali-Med]

My Jak2 was negative and bone marrow biopsy result is normal and I have an appointment with a doctor this week but still, my EPO, BCR tests are left but I'm taking aspirin and hydroxyurea on doctor recommendation due to taking hydroxyurea my symptoms are much controlled but still not confirmed that what I have Secondary or primary PV, EPO mostly low in Primary Pv, I hope your doctor can tell you better about next procedure

[Ethicalthinker in reply to Ethicalthinker]

Yes, in secondary PV some underlying condition can cause problems with blood cells

[Cali-Med in reply to Ethicalthinker]

My Dr. Has been on vacation so I haven’t heard from him. I know low ÉPO signifies Primary PV. I have insomnia, not sleep apnea but I read a study saying sleep deprivation can effect RBCs.

Good luck keep me posted.

Thanks

[meaboutthis]

Hi there,

I've had JAK2 neg PV for 7 years now - normal bone marrow but elevated Hgb, HCT and RBCs like you. My Dr had me tested for all of the other reasons one can have these elevations, looking for secondary polycythemia, and those repeatedly came up with nothing. So, even without the typical, WHO-criteria-confirmed symptoms of PV, he feels I have a variant. But my Dr is wary of starting me on a med, which I am grateful for, and I am lucky that my symptoms are generally helped by phlebotomy and aspirin alone. I suggest you keep on searching for answers - for me, it still feels unsettling to not have a "nailed down" diagnosis. Also, even though I trust my primary oncologist immensely, it helped me a great deal to get a second opinion because then I had two knowledgeable people thinking about my unusual case, which made me feel more confident about the conclusions they came to. Good luck!

Jo

[Cali-Med in reply to meaboutthis]

Thanks for your response! I have an appointment in Sept with well known MSN specialist at Stanford in California. Don’t know if this is the right way to go.

[Jschwab in reply to Cali-Med]

I think it is. It's worth it... keep us posted 💕

[Cali-Med in reply to Jschwab]

I had to move my appointment back to November. So I won’t hold my breath!

Thanks

[kp27kathleen]

I find good info on "Merck manual" online

[Cali-Med in reply to kp27kathleen]

Thanks I’m going to check it out!