Hematocrit Continues to Drop After Stopping Hydroxyurea

Good morning, @rjohn3702 At 30% your hematocrit is lower than the normal range for males. Hematocrit measures the percentage of red blood cells in your blood and blood cells are important because they carry oxygen throughout your body. So if you’re ‘running a quart low on oxygen’ that can be an explanation for your fatigue. This number alone doesn’t give the entire picture. It works in conjunction with your hemoglobin to give an indication of the health of your red blood cell production.

You mentioned a small mass showing up on your kidney/bladder area. Low hematocrit levels are a sign of anemia. Anemia is a common complication of kidney disease.
Has your doctor discussed the possibility of anemia with you? Will you be having further tests to see what’s going on in the kidney area?

Lori, thank you very much for your comments, which are most helpful. My CT Scan was sent to my urologist for his review, so I'll have more information afterwards. My original thought was can polycythemia vera stop and perhaps turn into anemia or leukemia? I saw a panel of doctors on youtube discussing long-term usage of hydroxyurea where they concluded that 10% of patients every 10 years get leukemia. If appropriate I will post again after getting the results of a CBC blood test this Monday.

Hi @rjohn3702, Polycythemia Vera is a very slowly developing blood cancer where your body produces too many red blood cells. It’s caused when a random mutation occurs that tricks the bone marrow into over production.
You are correct that PV can sometimes progress into other forms of blood conditions.
I’m not sure what the percentage is of PV patients going on to another phase of the disease, but when compared to the discussion you watched on youtube regarding the long term use of hydroxyurea, I’m wondering if maybe the odds are about the same.

The Hydroxy was important in arresting the over production of the red blood cells. Without it you could have developed some serious and possibly lethal complications such as blood clots, organ and tissue damage. We always have to weigh the risk/benefit of medications and in this case, it was very beneficial for you to be on it.

Four years ago, I had AML, an aggressive form of leukemia and received bone marrow transplant to keep me in remission. It’s been an amazing odyssey but i’m feeling fabulous and living my best life at 69. So I have some experience under my belt in this area. I joke about “better living through chemistry” but that’s what has bought me precious time on the planet. Some of of the drugs I was on had serious potential side effects, but they bought me time that I wouldn’t otherwise be enjoying now! 😉

Don’t hesitate to drop in anytime for a chat if I can help you out with anytime. Good luck with your CBC tomorrow and we’ll hope for the best with the CT scan. Let me know, ok?

Thank you again for your honest and helpful comments and when/if my medical situation makes notable changes, I will keep you informed (ahh to be 69 again)!

I was started on HU in November to lower platelets, but have experienced extreme fatigue, shortness of breath. Mouth sores and hair loss. I’m 83 and in otherwise decent health. I want to stop HU. Dosage has been 500mg daily. Platelets dropped from 612 in November to 270 now. Had bone marrow biopsy and the diagnosis went from ET to prefibriotic myelofibrosis Dr doesn’t want me to stop HU. But I agreed to do 3 times a week to see what happens. The side effects are bad for my everyday life.

PS Just noticed my previous comment has been moved here. I really don’t want to keep taking HU. Is this foolhardy? For some reason my dr wants me to continue. And before I insisted and made a fuss he didn’t even want to monitor monthly. He scheduled me for 3 months!! I feel very unsure about what is happening to me. He told me not to read anything on internet and just forget about everything and not worry??!!?? Result: I’m very unhappy about everything to do with my diagnosis

Flynnconn, I have no medical experience what so ever but I read anything and everything pertaining to my health related areas and I'm on a first name basis with Dr. Google (its just Google). I was taking 1500 mg per day of HU and had done so for 8 years but when my blood test indicated my hematocrit was too low for two consecutive months I just stopped taking it. Stopping was a big let down because I certainly didn't feel any better and all the side effects I had perceived (there were lots of them) over the years were sorta no where. My DR and NP finally agreed I should stop the HU.

Further research into my hematocrit problem revealed that if you have polycythemia vera long enough it will turn into the "spent phase" where your bone marrow has run out of steam (my words) and ceases to do anything and you enter the upside down world where instead of phlebotomies you will need transfusions...at least I found the cause of my current problem...