T Nation

I Have Polycythemia. Anyone Have Experience Managing It?

After lots and lots of tests, dozens of tests through a specialist at the hospital, they found out i had mild polycythemia, not vera, now I know what this is and was wondering how to manage this.

I’ve read people give blood regularly to keep the rbc in check, any other ways to manage this? I have never donated even once in my life but done a lot of cycles, so maybe thats why my RBC count got so sky high.

I have this feeling it really puts a burden on the arteries. Wouldnt it be good to give some blood?

You may want to confirm if it is polycythemia or erythrocytosis. Polycythemia is an elevation of RBC, HCT, Hemoglobin, platelets and White Blood count. If only elevated RBC, Hct and hemoglobin it’s likely erythrocytosis. Do you have sleep apnea. Primary polycythemia Vera can be diagnosed via the Jak2 bio marker blood test. Options are to lower your current test dose, donate blood but monitor ferritin and get treatment for sleep apnea if you have it

Did you tell your doc(s) about any and all test/steroids that you’re using and have used in the past?

As for whether you should donate: Did they not devise a plan for dealing with your high counts?

I have experience. I was not diagnosed with anything but was experiencing some terrible sides for two weeks straight (blurred vision, headache, red face, tightness in chest, rapid heart rate, extreme fatigue, and more). I read that these are symptoms of polycythemia. Looked at my most recent labs, when I was on a lower dose than my current one, and my hematocrit and hemoglobin were already at the top of range before increasing my dose.

Decided to give blood at my local Red Cross…

INSTANT Symptom relief! Not kidding. On the walk out to my truck I already felt better. That was 32 hours ago and still feelin great!

Holy cow man! sounds so fmailar i was walking around with those exact symptoms after my last cycle, even continued after pct, multiple blood tests and my hemo was really high, mostly the RBC count was skyrocketed even after pct, had all those same symptoms, it really felt like a pressure in my head, and the face rdness around nose and cheek etc, blurred vision.

i signed up to be a donator, and they had to test my blood first, before confirmed if im okay for donating.

they took just 4 long test tubes of blood, not that much, but i could swear i had less redness in face and head pressure less noticable.

I havent even donated an actual pint yet, but im really believing that it could eleviate much of the issues im having, i hope!

ill hear about it it this coming month, next appointmnet with hematologist is 10 june, ugh far off

they did one more extensive blood test just in case, they needed those results for that next appointment.

but i was thinking maybe it would do me good to donate before that time, as it could really lessen my symptoms

Are on prescribed TRT, or is it ‘self-prescribed’?

Also, per my question above: Did you fully inform the hematologist about your use of T and related compounds?

yes i told them my whole life story about gear and work, that i cycled al ot, and ruined my T

But my trt is selfpescribed yeah, in the netherlands they dont consider low to a real issue, they let men walk around depressed as fuck and dont think its a problem wit is 200, (oh ur on the normal range but low side) general physician that you get here dosnt have any knowledge on it and dont know that low t can cause a pandoras box of issues, often men get pills thrown at them for every complaint from depression to sex issues to mood, everything, while my some T couldve solve all those problems.

Theyre not trained on that here the general practicioners, theyre quite annoying, you have to like beg and revisit keep complaining about the same issue a 100 times before they wil forward you to a specialist, so i just get stuff myself less hassle.

At the moment im completely off, wanted to know more about the condition first and maybe get the RBCs down first.

atm im completely off, yah i will hear those results in a few weeks, then ill decide.

But i was thinking if donating some blood might help im gonna go for it