And again at my endo appointment I was found to have high hemoglobin and hematocrit (polycythemia vera) I saw a specialist and donated blood two months ago, but my readings are back high. So I’ve been asked to give blood every 8 weeks (as often as the Red Cross allows). Yes, I have to submit to bloodletting a practice that supposedly ended 150 years ago. But I guess I need it. As to whether it is related to possible genetic conditions is unknown. But in either case, I walked out of my appointment with an authorization for MODY testing and an order to give blood right away.
Has anyone else had polycythemia and had to give blood? Does anyone want to see a picture of bloodletting?
Uh, no Brian I think I’ll pass on the pictures. I’ve always been on the opposite end of the spectrum. My veins roll and refuse to give up the red gold. Once they finally tap into a vein, it sputters for a while and then resigns to drops of blood, and then fizzles completely. Then I’ll get my test results back saying I’m anemic. Really? Shocking?! Not…I didn’t have any blood to give you to tell me what I already knew.
Isn’t there a form of doping where athletes artificially induce this condition? And if so, does it have implications for your athletic performance? It definitely seems plausible that there might be a genetic link, though I know nothing about the specifics in this case.
You are talking about blood doping. There are various conditions that can cause polycythemia vera, one is when you don’t get enough oxygen which causes your body to produce more red blood cells to compensate. By doing blood doping before an event you can increase your oxygen transport and increase your Vo2Max. My blood oxygen levels have been tested and are fine though.
My former son in law had the same condition. He had blood drawn every two months. Stabilized the condition. He also had auto immune issues and his mother was diagnosed with LADA in her 50’s. I assume he is still very active and healthy, does 50 mile bike rides for fun. Bottom line as long as he kept on his blood giving schedule it did not cause him any issues.
I’m not certain, but I believe that I have a cousin (in-law) with that condition. In his case, he found out after having heart attack like symptoms. Was diagnosed because his PCP’s brother is a hematologist. In any event, it’s treatable and manageable, I believe, but not something that will just go away
Sorry about this news Brian it must be a shocker for sure. If you haven’t already I would go to a hematologist to make sure this is the correct diagnosis… my father’s gastro doc was sure he had Myelodyplastic Syndrome- a bone marrow test showed no MD- he had anemia and he needed iron transfusions.
That’s great that you got the MODY testing approved!
I did see a hematologist and also had an overnight oxygen test as I mentioned above. I was tested for the basic genetic variants which cause polycythemia vera (JAK) as well as a few other things. All negative. Jews of European descent have have been identified as having higher rates of polycythemia.
I’m actually not shocked by the diagnosis at all. Ever since I was diagnosed with D and had to change my relationship with the healthcare system I started collecting every single test result. That information is mine and I’ve had high HgB and hematocrit since forever. I’d repeatedly asked about it and been dismissed, but apparently as you age it can get worse and it finally got people’s attention.
Hey, sounds like a WIN-WIN! You get to (hopefully) have your hemoglobin and hematocrit in a more normal range, which will help your meter accuracy and A1C accuracy (among other things). Your local blood bank gets to have a regular customer.
Here’s hoping you don’t become the “training” tool for all the newbies @ the blood bank!
That’s good that it’s not a shock. Interesting that it also has a hereditary component. Collecting test results is a good idea. Many of mine are online now since I get the testing at one hospital mostly.
