Hello @momoffivetoo. I’m 77 now and was diagnosed with PV in 1/2020. It was discovered by “accident” during a routine check and my complaint of severe knee pain. The blood work showed elevated hematocrit, amongst other things. My GP sent me for a blood test and it was confirmed when they found I had JAK2 mutation. He told me to find a hematologist asap in my new home state.
I had just moved resident states so I found a hematologist but after what I considered less than appropriate interest in making me understand exactly what the condition is and how it would be treated, and what the long term would be like, I found a great hematologist at Mayo who put me on appropriate dose of Hydroxyurea and phlebotomy. She listened to me, answered my long list of questions and treated me like I had the intelligence to understand what she was explaining.
I was also diagnosed with gout! (The knee and some toe pain) And, I’ve been on allopurinol which has put that under control.
I’ve discovered that as soon as my hematocrit reaches 42 I feel it in my legs and ask for a blood draw and then, as necessary, phlebotomy.
After these 7 years I’m down to routine blood draws every 3 months (from monthly).
As suggested by my doctor, I take the Hydroxyurea at night and just before bed to minimize any side effects.
Early on an abdominal ultrasound was ordered to assess any problems with spleen. It sounds like you should ask about getting one done.
Itching really hasn’t been a big problem for me. I have lost some hair, but then I’m in my 70’s and unwilling to think it is as likely to be age related as the result of the Hydroxyurea.
Last month my new GP discovered my thyroid level was very low despite my having been OK with med for years, so meds are being adjusted. And my triglycerides elevated (for the first time ever that Im aware of).
Like you I’m on the same journey to lose weight and have lost about 60 lbs over the last 3 years. So, congratulations because that’s been a problem for me since my 20’s.
I don’t think you’re “jumping the gun”. I think your GP should have sent you for the genetic test early on but done is done. I am surprised that no one at the donation center did not discover the higher than normal levels and reject you as a donor. Im told the blood they draw from me has to be tossed.
I urge you to find a hematologist who will listen to you, answer your questions and tests you, not just the condition. When I first complained of pain in my legs and my hematocrit level was very low”only” at 42.1, a nurse told me I shouldn’t have a problem at that level! Well, I did and after speaking with doctor, she ordered the phlebotomy.
You know how you feel no matter what anyone else says or what “standard” requiring phlebotomy is.
My biggest complaint at the start and throughout has been fatigue.
This is the first time I’ve shared on this forum but I thought I could help you with my experience. I hope so and I have a tendency to listen to doctors and then breakdown what I’ve been told to basic terms so sorry if I’m not as technically “spoken” as some.