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Shawn,
I realize this message is from last January but I wonder how you are doing and what you found out. I, too, have Polycythemia and they have been trying since last December to figure out if it is Secondary or Primary. I have three different Hematologists/Oncologists. They have tested me and tested me. Although I used to smoke, my carbon monoxide level when I smoked fulltime came back at 4.8. I'm sure it's much lower than that today. To qualify as Smoker's Polycythemia it would've had to be over 9.0. I have had my heart and lungs checked, endocrine levels, cysts, and tumors all looked for and at with x-rays, ultrasounds and CT scans.
The symptoms listed are of polycythemia period and not just Secondary Polycythemia. So far my polycythemia cannot be traced to an underlying condition. My oxygen levels are high where a patient whose oxygen level is abnormally low probably has secondary polycythemia. My Erythropoietin is 4.8 on a scale of 4.1-19.5 so it is not considered elevated as in secondary polycythemia. Red blood cell mass has been declared unreliable and is almost impossible to get these days. Did all the imaging studies, chest x rays, pulmonary function test, bone marrow biopsy and more.
Since we have found no underlying condition doctors suspect Primary Polycythemia and have been using phlebotomies to reduce the number of red blood cells. I've had 10 of them this year so far. It looks like I am headed towards the chemotherapy. I don't exactly fit the criteria for Primary but I am very close to it so my doctors think they caught me in the very beginning stages of Primary Polycythemia.
I'm interested in why you would think you have Secondary if you can trace your symptoms all the way back to high school. I can't see you having an underlying condition that stayed for all those years. My face turns ruddy when I need a phlebotomy. Once you start having them you learn to recognize when you need one. I've researched this a LOT over the past year and yours is the first reference of an RBC Rouleau I've seen. I'm not sure what that is. But I recognize the signs you listed definitely.
I'm sure you've moved on by now but I'm surprised you were waiting on your family doctor. My family doctor is the one who called me right away after some blood tests and said you need to go to a Hematologist/Oncologist right away. I'm sure you've seen at least one of those by now.
If you are still dealing with this and would like more information I belong to an MPD-List (myleproliferative disorder) which is wonderful on keeping up with all the latest medical advances, clinical trials, experts and just everything to do with this condition. Email me if you're interested. Sure would love to hurt how you are doing today!
Beth
Sweetbabe3@yahoo.com