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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sregiani | @sregiani | Apr 20 9:21am

Try an online search for the MPN Research Foundation. Lots of good info. Hopefully you have a heme doc who is familiar with, and perhaps belongs to, this group. You can sign up for their newsletter and learn more. Best wishes!

docoltun | @docoltun | Apr 20 10:58am

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.

pattycake11 | @pattycake11 | Apr 21 6:41am

In reply to @sregiani "Try an online search for the MPN Research Foundation. Lots of good info. Hopefully you have..." + (show)

Thanks for the info. Have a blessed day

pattycake11 | @pattycake11 | Apr 21 6:47am

In reply to @docoltun "Has anyone suggested Anagrelide? I'm not a doctor tho that's what was suggested for me over..." + (show)

Thank you I will ask my hematologist about this . I have been on hydroxyurea for 4 years. Thanks again I’ll check this out. Have a blessed day

kafr | @kafr | Apr 21 7:48am

I was diagnosed last year with ET CALR mutation. When my platelets rose to the level of 552 the end of February, my oncologist prescribed .5 mg Anagrelide 1x daily. I had slight heart palpitations at first, but they shortly subsided. I now have no side effects. I am 74 years old and have energy to continue hiking and golf. I protect my skin for sun exposure. My platelets level as of April 8th have already gone down to 465. I am so pleased to have no side effects and it is quickly working to lower my platelets!

Colleen Young, Connect Director | @colleenyoung | Apr 21 5:38pm

In reply to @pattycake11 "Thank you I will ask my hematologist about this . I have been on hydroxyurea for..." + (show)

@pattycake11, you mention that the bone marrow biopsies were negative and it's not cancer and you've been on hydroxyurea for the past 4 years. Do you have a diagnosis? Essential thrombocythemia (ET)?

pattycake11 | @pattycake11 | Apr 22 5:06am

Thrombocytes. I think this is close to how you spell it. The hematologist still is not real sure. They cannot pinpoint the root cause.

pattycake11 | @pattycake11 | Apr 22 5:11am

In reply to @kafr "I was diagnosed last year with ET CALR mutation. When my platelets rose to the level..." + (show)

Thank you for your reply. I see my hematologist in 3 days and I am going to ask her about this. You are the second person that has suggested this. The last time I had my checked they were in the mid 600. Very concerning

pattycake11 | @pattycake11 | Apr 22 6:37am

In reply to @colleenyoung "@pattycake11, you mention that the bone marrow biopsies were negative and it's not cancer and you've..." + (show)

I found the correct spelling of my diagnostic thrombocytosis

nohrt4me | @nohrt4me | Apr 22 8:13am

Thrombocytosis can be essential (caused by a mutation) or secondary (caused by another disease). They are treated differently. If your current doc is stumped about which type you have, could you ask for a referral to a diagnostic specialist?

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