1. < Blood Cancers & Disorders

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

Posted by pattycake11 @pattycake11, Apr 19 1:26pm

My platelets are to high and I have had 2 bone marrow biopsy and they were negative. On medication but not a lot of success. Glad it is not cancer but would really like to know what is causing this issue. I go for blood work at least once a month sometimes twice. I know this can cause blood clots or stroke. Any help would be appreciated.

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eileen11108 | @eileen11108 | May 10 7:31am
In reply to @pattycake11 "I have had 2 bone marrow biopsy in the last 2 years nothing showed up" + (show)
@pattycake11

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

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Hi pattycake, I kept rereading your posts. It is very confusing that you do not have a diagnosis after two bone marrow biopsies. I hope you are seeing a MPN specialist.
Best wishes, Eileen

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pattycake11 | @pattycake11 | May 10 7:34am
In reply to @dkmitchell "I also have the JAK2 mutation as does my brother. My brother could not tolerate the..." + (show)
@dkmitchell

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.

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WOW the highest I have been is 850. Just cannot seem to get out of the 600s

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jackiecarey | @jackiecarey | May 11 8:59am
In reply to @docoltun "Has anyone suggested Anagrelide? I'm not a doctor tho that's what was suggested for me over..." + (show)
@docoltun

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.

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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....

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1 reply
pattycake11 | @pattycake11 | May 11 9:35am
In reply to @jackiecarey "Hello, Ive have PV on hydrox with a high symptom burden. I'm a retired level one..." + (show)
@jackiecarey

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....

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My diagnosis is thrombosis?? On spelling

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pattycake11 | @pattycake11 | May 11 9:36am
In reply to @memere09 "I have been on meds for 12 years. My only risk factor for heart attack/stroke is..." + (show)
@memere09

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.

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It is frustrating

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pattycake11 | @pattycake11 | May 11 9:39am
In reply to @bosmac "You are absolutely correct on doctors taking time before they can figure out the problem with..." + (show)
@bosmac

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.

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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

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1 reply
bosmac | @bosmac | May 11 5:55pm
In reply to @pattycake11 "I am on aspirin as well. I read somewhere that if bone marrow biopsy didn’t show..." + (show)
@pattycake11

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

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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.

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1 reply
pattycake11 | @pattycake11 | May 12 6:04am
In reply to @bosmac "Thanks pattycake11 Yes, all other blood work and scans ultra sounds didn’t show anything except the..." + (show)
@bosmac

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.

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Keep us posted. Prayers

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