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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

laurasugargrove | @laurasugargrove | Jul 9 6:45am
In reply to @pattycake11 "My results were not that quickly. My other blood test have been pretty much ok. Right..." + (show)
@pattycake11

My results were not that quickly. My other blood test have been pretty much ok. Right now I am on 3 a week and platelets are not budging very much. I have had 2 bone marrow biopsies and didn’t show anything. It has been frustrating not having a definitive cause of my high platelets.

Jump to this post

Maybe asked already, were you tested for the JAK2 mutation (or others)? This would typically be a blood test (not the BMB). I am not sure I saw that addressed in the string.

REPLY
1 reply
pattycake11 | @pattycake11 | Jul 9 10:31am
In reply to @laurasugargrove "Maybe asked already, were you tested for the JAK2 mutation (or others)? This would typically be..." + (show)
@laurasugargrove

Maybe asked already, were you tested for the JAK2 mutation (or others)? This would typically be a blood test (not the BMB). I am not sure I saw that addressed in the string.

Jump to this post

I am not sure. When I first went to the hematologist they drew 14 vials of blood. I go back in august I am going to ask my doctor if this was tested for I am sure they did. I think I remember reading about this un some of the result.

REPLY
1 reply
laurasugargrove | @laurasugargrove | Jul 9 10:37am
In reply to @pattycake11 "I am not sure. When I first went to the hematologist they drew 14 vials of..." + (show)
@pattycake11

I am not sure. When I first went to the hematologist they drew 14 vials of blood. I go back in august I am going to ask my doctor if this was tested for I am sure they did. I think I remember reading about this un some of the result.

Jump to this post

I definitely would ask about this - and ask for this testing if not done. For me, it was the JAK2 plus blood counts that resulted in my initial ET diagnosis. I did have a BMB as well, but as my MD explained to me, this was to ensure I had ET and that I didn't have fibrosis that would mean MF (another type of MPN).

PS - 14 vials of blood! Wow! I have never had anywhere near that many. Usually just 1-2.

REPLY
vas73 | @vas73 | Jul 9 10:51am
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.

Jump to this post

I've been on anagram ice for 40 years with no problems until this year & now I've advanced to my login risks so I don't know what I'll be taking & I have an enlarged spleen!

REPLY
vas73 | @vas73 | Jul 9 10:56am

I've been on anagrelide for 40 years with out a problem till this year & now have mylofibrosis & an enlarged spleen! I don't know what I'll be taking now! Going to Mass. General hospital Thursday to talk to a doctor that is experienced in my disease.

REPLY
1 reply
pattycake11 | @pattycake11 | Jul 9 2:44pm
In reply to @vas73 "I've been on anagrelide for 40 years with out a problem till this year & now..." + (show)
@vas73

I've been on anagrelide for 40 years with out a problem till this year & now have mylofibrosis & an enlarged spleen! I don't know what I'll be taking now! Going to Mass. General hospital Thursday to talk to a doctor that is experienced in my disease.

Jump to this post

Please keep us informed.

REPLY
bosmac | @bosmac | Jul 10 8:16am

I saw the following comment and it may help you understand this condition further :
"
Thrombocythemia and thrombocytosis are conditions that occur when your blood has a higher-than-normal platelet count. Platelets are tiny blood cells. They are made in your bone marrow along with other kinds of blood cells. Platelets are also called thrombocytes, because a blood clot is also called a thrombus.

Thrombocythemia refers to a high platelet count that is not caused by another health condition. This condition is sometimes called primary or essential thrombocythemia.
Thrombocytosis refers to a high platelet count caused by another disease or condition. This condition is often called secondary or reactive thrombocytosis. Thrombocytosis is more common than thrombocythemia.

REPLY
2 replies
bosmac | @bosmac | Jul 10 8:19am
In reply to @bosmac "I saw the following comment and it may help you understand this condition further : "..." + (show)
@bosmac

I saw the following comment and it may help you understand this condition further :
"
Thrombocythemia and thrombocytosis are conditions that occur when your blood has a higher-than-normal platelet count. Platelets are tiny blood cells. They are made in your bone marrow along with other kinds of blood cells. Platelets are also called thrombocytes, because a blood clot is also called a thrombus.

Thrombocythemia refers to a high platelet count that is not caused by another health condition. This condition is sometimes called primary or essential thrombocythemia.
Thrombocytosis refers to a high platelet count caused by another disease or condition. This condition is often called secondary or reactive thrombocytosis. Thrombocytosis is more common than thrombocythemia.

Jump to this post

The source of the above quote is :
https://www.nhlbi.nih.gov/health/thrombocythemia-thrombocytosis#:~:text=Normally%2C%20your%20spleen%20stores%20platelets,can%20raise%20your%20platelet%20count.

REPLY
pattycake11 | @pattycake11 | Jul 10 10:45am
In reply to @bosmac "I saw the following comment and it may help you understand this condition further : "..." + (show)
@bosmac

I saw the following comment and it may help you understand this condition further :
"
Thrombocythemia and thrombocytosis are conditions that occur when your blood has a higher-than-normal platelet count. Platelets are tiny blood cells. They are made in your bone marrow along with other kinds of blood cells. Platelets are also called thrombocytes, because a blood clot is also called a thrombus.

Thrombocythemia refers to a high platelet count that is not caused by another health condition. This condition is sometimes called primary or essential thrombocythemia.
Thrombocytosis refers to a high platelet count caused by another disease or condition. This condition is often called secondary or reactive thrombocytosis. Thrombocytosis is more common than thrombocythemia.

Jump to this post

Thank you this is helpful info

REPLY
pattycake11 | @pattycake11 | Jul 10 1:35pm
In reply to @sregiani "Try an online search for the MPN Research Foundation. Lots of good info. Hopefully you have..." + (show)
@sregiani

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!

Jump to this post

I have an hematologist since 2019. I have read everything I can get my hands on regarding high platelets. But thanks for the info

REPLY
View MoreView Less
Please sign in or register to post a reply.