Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
I was diagnosed with Platlet counts at 1.6 million. Have been on hydroxy for 4 years now ( I cant tolerate Anagralide.) with no real issues until recently. My platelet count had seemed to stay between 500,000 to 700,000 hovering some where in the 600,000's . Last few test results the counts have been dropping to the low 500,000 and most recently to low 400,000's I havent changed my dosage of meds (2x per day) but am a bit concerned that somthing else might be going on. Have been dizzy easier and the white and red cell counts are lower than they have ever been. Any ideas as to why now after 5 years of nothing I'm experiencing some changes?
Well, I am not a doctor, but like others with this problem, I read a lot. Hydroxy Urea, if I understand correctly shuts down the platelet making process. I beleive it also hinder red and white blood cell production. If you have recently increased your dose, that might be a connection. A bone marrow biopsy (I know, not much fun) might be the next way to get a better understanding of what is going on.
I have had a high platelet count for 8 years. I have had a bone marrow biopsy done and it was negative and a JAK2 that was also negative.
When my platelet count is up. I get headaches that makes me want to cut my head off. My doctor doesn't believe me when I tell him I know my platelet count is up when I can't stop the headaches.
Does any one else have this problem too?
Has anyone been told the medicines they are taking is the cause of their high platelet count?
My mom had acute myeloid leukemia and went to heaven.
My older sister is having mini-strokes and her blood work looks great. No high platelet count.
My oldest sister is not making blood like she should. Her doctor is not concerned about her.
My mom was diagnosed with this blood disorder about a year ago. She was put on Hydroxyurea and aspirin. She recently was admitted to the hospital, she had a mini stroke. While in the hospital she had a procedure called plateletpheresis done twice which brought her count down to 579,000. She was sent home a week ago. Her meds were increased. She just had a follow up with the blood doctor and her count has risen over 800,000. The doctor sent her for another blood test and she is supposed to called for the results tomorrow. The doctor is not sure why they are increasing. I have looked on the internet and can not figure it out. Any suggestions would greatly be appreciated?
Thank you,
Mindi
Mindi, it is possible your Mom was not taking enough H.U. 500 mg a day is about the minimum I've heard for anyone. Did your mother have a bone marrow biospy? Did it confirm ET? The research I have done inidcates that HU shuts done the cloning process of the platelet precursor cells...why the HU isn't working I do not know. I do know that increased doses did take ~ 1 month to result in my platelet counts dropping - apparently , at least for me , there is a time lag between starting to take the HU and the platelet count dropping.
Hi. I'm new to this site, and I'm glad to have found a forum for ET. It's hard to talk about it to anyone who has no idea what it is.
I became very ill in July of 09. My doctor thought it might be mono, so he did a blood test. It came back negative for mono, but my platelet count was high. He waited a week to redo the test since I had just come off a steroid for bronchitis, and it came back even higher. I went to see a hemotologist in Pittsburgh and my platelet count was well over a million. He admitted me immediately.
I went through three rounds of plasmapheresis in a week before they sent me home. A week later I was back in the hospital only to have to go through the whole ordeal again. My doctor finally did a bone marrow biopsy which came back positive for ET.
I have been on Hydrea and Anegrilide since July and it hasn't been working the way that it should. My doseage keeps increasing, as do my platelets. I have been in and out of the hospital for the past 8 months.
I should probably say that I was 19 when I was diagnosed, and am only 20 now.
Is anyone else this young and have ET? I'm just curious because it's very rare in people my age.
Thanks for listening to my story. It feels really good to finally have people who understand what I'm going through.
I always had horrible headaches that never went away no matter what I took for it. When I was diagnosed, I was told that migraines were a symptom. Now I can tell when my platelet count is high because I get migraines again. I never heard of meds causing headaches though.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
re
