Persistently Elevated Platelets Fluctuating

Hi, welcome to the site. You have not said if you have been to a hematologist. If so, did they do extensive labs and bone marrow biopsy?

Good luck, Eileen

Yes I’ve been to my local specialist hematologist and to a hematologist in Houston as well. They have done so many labs. They haven’t done Jak2 genetic testing because insurance won’t cover it. Have suggested bone marrow biopsy to rule out cancer but both hematologists said they don’t think it is, they think it is reactive to something no one can put their finger on, so I have declined bone biopsy for now.

Have they recommended you take a low dose aspirin daily to help prevent blood clots?
Eileen

No they have not. They seem to think because it fluctuates in a not normal but apparently not alarming range it can just be monitored. It feels important to know what the root cause is, but none of the specialists have been able to identify anything. (GI, rheumatology, etc.)

Anna, I had year fluctuations of platelet levels, all over normal, for almost 30 years before the level reached a million, and the testing began. Doctors assumed that, despite visual migraines, my asymptomatic condition was some congenital thing. Once I was diagnosed with ET (JAK2), my red blood cell count went haywire as well--this was just in the last year, I was welcomed to the PV club. Reluctantly, I started Besremi injections this year, and am still moving upwards toward the max dose. With my last shot, my platelets did go down 20% and hematocrit was normal. In retrospect (not an exact science!) I think I have been having symptoms due to "thick" and poorly balanced blood, and right now I can never be sure if it is the cancer or the medicine affecting me. I don't know if I should have pushed for answers earlier. I am now feeling that, despite good lifelong health practices, my high platelets at 65 means something different than it did for my younger self. Perhaps going for decades without an apparent stroke or clots was just par for the course for me? Or perhaps the science, and my local docs should have advised me to seek help earlier. It is a mystery. I imagine doctors will ask you to keep track of how you FEEL as well as seeking test results. For my own peace of mind, I had to learn as much as possible about my condition, and make a decision as to treatment. But not letting fear get to you is good too! Best of luck.

Thank you for sharing. It seems I’m at the age where it started for you. It’s fascinating that it took so long for them to rise above that million threshold. I do try not to worry, but t is frustrating to not have answers. I actually feel much better after beginning treatment for a severe vitamin D deficiency. One day at a time I suppose.

You should make an appointment with Hematologist MD

consult another hematologist.
it's better to be sure. Bone marrow
is not scary. My husband did it.
High platelets can be dangerous.

I was diagnosed low risk MDS two years ago.

My platelets have been steadily rising since last Fall and have gone over a million now.

I recently had a spleen ultrasound and a chest/pelvic CT and they don't see anything that would cause them.

I am awaiting results for JAK2 mutation.

My doctor is concerned and I will probably get another Bone Marrow Biopsy. I chose to be sedated during the biopsy and I think I will choose that again.

Best of luck with your platelets!

If they are checking for Polycythemia Vera, the Jak 2 test (Pisitive)will confirm. No need to do the bone marrow biopsy is what I was told.