Platelets are too high: What can be done to find root cause?

I have had 2 bone marrow biopsy in the last 2 years nothing showed up

I also have the JAK2 mutation as does my brother. My brother could not tolerate the side effects of hydroxyurea but I can. My brother is taking a different medication for the JAK2 mutation but not sure what it happens to be. My last blood draw revealed a 408 blood platelet count and my first platelet count last a year ago was 1 million.

Has anyone suggested Anagrelide? I'm not a doctor tho that's what was suggested for me over 20 years ago and still working, no side effects. Check with your oncology hematologist if that might be a solution for you. When I started, it was a new drug under the name Agrylin....it's generic now.

Hello, Ive have PV on hydrox with a high symptom burden. I'm a retired level one trauma nurse and never heard this drug mentioned.. May I ask if you have PV? This drug has never been mentioned or offered to me....

I have been on meds for 12 years. My only risk factor for heart attack/stroke is that I am I over 65. I take 1 pill of hydrea every day and an extra on Monday Wednesday and Friday. My counts are still I over 700. I refuse to take anymore. I can function okay but not at the level I was used to and my hair is thinning.
I had a second opinion and the hematologist said that as long as the numbers were under 1 million and no additional risk factors that I should be okay. I guess every doc has their own way of interpreting the studies. My guide is - how do I feel. I refuse to sit on the couch all day and worry about it.

You are absolutely correct on doctors taking time before they can figure out the problem with raised platelets. I have been seeing my GP since March this year. Several test done. Today he rang me in and told me CARL Exon 9 Mutation and JAk2 V617F Mutation have been detected in my blood sample. He said i have ET but she needs me to do a bone marrow biopsy before he can put me on medication. My platelets have been rising since 2021 and today reading was 848. She asked me to return in 3 weeks time for the bone marrow procedure. In the meantime she put me on 100mg aspirin.

I am on aspirin as well. I read somewhere that if bone marrow biopsy didn’t show anything and all other blood work and scans ultra sounds didn’t show anything it would be a fluke if they found the cause

Thanks pattycake11
Yes, all other blood work and scans ultra sounds didn’t show anything except the Carl and JAK2 gene mutations that were detected. Am going in for bone marrow biopsy on 28th of this months( they changed from 23rd!!) and then I will update on this.

You are absolutely correct on doctors taking time before they can figure out the problem with raised platelets. I have been seeing my GP since March this year. Several test done. Today he rang me in and told me CARL Exon 9 Mutation and JAk2 V617F Mutation have been detected in my blood sample. He said i have ET but she needs me to do a bone marrow biopsy before he can put me on medication. My platelets have been rising since 2021 and today reading was 848. She asked me to return in 3 weeks time for the bone marrow procedure. In the meantime she put me on 100mg aspirin.

After being started on 500mg daily of Hydroxyurea for the last one month, my platelets have dropped from 848 to 466. However, this has also reduced my White blood cells (WCC) from 7 in March to 3.4 in July plus a further reduction in my kidney function from 47 to 41.
Anyone here having experienced this kind of reductions when they first started using hydroxyurea?