Polycythemia Vera, Antiphospholipid Syndrome & Hemochromatosis

chattiek @chattiek, I have PPV_MF and 9 different rare diagnosis so your many frustrations . Hemochromatosis, I was never got diagnosed but I've had doctors worry about my iron levels, always too high, even in pregnancy; I had to get special vitamins without iron. Doctors worried about iron over load, well my friends would suffer anemia and doctors would say; "Why is your iron so high?" 2022 Diagnosed with PV; I was shocked and hematocrit and hemoglobin are extremely high but low MCV = 73. (first time anemia) Bone Marrow Biopsy; MF is in my bones so it causes scaring and smaller red blood cells. I can understand your story; don't have Antiphospholipid Syndrome. But i have several rare disease that can be tricky. My sister died after she bone her leg and corner found dozens of blood clots. dead "unknown blood disorder" I feel for you, my heart goes out to you. Prayers and best wishes

Thank you for replying. So sorry for all you go through and for the loss of your sister. She may have had an undetected Antiphospholipid condition- a producer of blood clots - that is what was found to be with my honey’s leg thrombosis at the start of this all - for awhile he had a blood clot catcher that was later removed
His PV is controlled well with the drug Jakafi and a blood thinner for AP. Hemochromatosis looks like may be ruled out - as just ferritin was high and numbers coming down - most likely cause - inflammation- after an MRI and Ultrasound - appears Gallstones a contributing factor - pursuit continues soon to consult with Gastroenterologist.
Relieved conditions not elevating - thankful monitored well.
Starting my own pursuit of what is going on with me - the past few months - fatigue, dizzy, blood pressure running higher where normally low, alien feeling it feet and legs (pressure, tightness, slight swelling, now compression, some pain in leg veins (vascular ultra sound say veins look good) next stop patiently waiting for cardiologist appointment end of March.
We are in the New England area.
75 for honey - almost 68 for me (my first encounter with not feeling well since I was in my teens with mono - I have been very blessed)
Wishing you great result with your care and conditions. Our bodies are so complex - fortunate for the internet for researching, educating, communicating and connecting.
May health and comfort be with you and yours
Kat