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Old 07-27-2011, 09:54 AM   #1
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Essential Thrombocytosis (high platelets)

I’m 43 years old and was diagnosed with ET 8 Years ago when I was only 35 years old. My platelet were over a million at the time of diagnosed. My doctor put my on Agrylin since then and I have been on the medication for 8 years. I am taking about 3 pills a day and my platelet now are around 400. I wanted everyone to know that my doctor decided to put me on the pills because there was a case of a 40 years old male that had platelet in the million and his doctor decided just to put him on baby aspirin, he had a blood clot on the jobsite in the brain and he died on the spot. If he was on medications, he would have been a live today. I know that there are a lot of risks with taking the medications but why worry about blood clots the can occurs in the brain and will kill you on the spot, it’s not worth the chance. If anyone is still here and want to talk or ask any questions, please feel free.

Last edited by moderator2; 07-27-2011 at 03:01 PM. Reason: please do not post your personal contact details

 
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Old 07-27-2011, 04:50 PM   #2
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Re: Essential Thrombocytosis (high platelets)

Hi!I completely agree with U.I have PV and taking Agrylin for 11 years.I take two mgs in the morning and one at night.I also take two 81mg aspirin every morning.
Take care and God Bless;
Randy

Last edited by Administrator; 01-03-2013 at 08:09 PM.

 
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Old 07-27-2011, 09:34 PM   #3
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Re: Essential Thrombocytosis (high platelets)

Quote:
Originally Posted by Pottsey1 View Post
Hi!I completely agree with U.I have PV and taking Agrylin for 11 years.I take two mgs in the morning and one at night.I also take two 81mg aspirin every morning.
Take care and God Bless;
Randy
I take 3 pills a day 0.5 mg each. May I ask how old you are? because I keep hearing that longer and older you are more risky it is. You take care too.

 
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Old 03-13-2012, 08:25 AM   #4
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Re: Essential Thrombocytosis (high platelets)

Hi:
I'm new to this site and I'd like to say thank you for your input.
I am a 63 year old Viet-Nam Vet (Danang 1970/1971) and I'd like to get more information on this condition.I was diagnosed with Essential Thrombocytosis in Oct. of 2007.It could've been the result of being exposed to Agent Orange,when I was in 'Nam.Please respond with whatever you have to offer.I NEED direction with this.Thanks so much and GOD bless.

 
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Old 01-02-2013, 08:11 AM   #5
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Re: Essential Thrombocytosis (high platelets)

HI Not sure if you are still on here, but was wondering what the side affects of the meds are? My daughter has had elevated platelets (15 yrs old) for the last 3 years and the doc only temporily put her on baby asprin when they were over a million. Currently they are in the 600,000 range. I'm wondering if she should be on some type of meds? Any advise or info you can give will be appreciated. Thanks!

 
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Old 01-02-2013, 11:20 AM   #6
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Re: Essential Thrombocytosis (high platelets)

Hi "I wonder if"........ Thanks so much for sharing.It is truly a blessing to hear from someone about this condition.Anyway,I was & am still on ,since 2007, a med called hydroxyurea(Hi -droxy- uray-ah) and it brought my total down from almost a million when discovered ,to around 460,000 or so,currently,which is considered a safe total.At least that's what I was told by my hematologist.I was also told to take an 81mg aspirin daily and this helped as well.By the way,I am required to get a blood draw monthly to monitor my count.So far so good AND there have been no side effects at all.

I was trying to make a case with the VA that Agent Orange (an herbicide used during the Viet-Nam war) may have been a contributing factor to my case.Even though it was over 40 years ago when I was there. Ask your Dr. about this med and maybe he/she can help/direct you.

I wish you and especially your daughter,the best of results.Can you please tell me (if you want).......Was your daughter's dad in Viet-Nam?............I'm curious because MANY vets from that era/war came down with ET even though the condition itself is considered "extremely rare" with no specific cause, even affecting the general public.(There were cases of some Viet-Nam veteran "dependents" coming down with this ET,as well).That's what I was told,again, by my hematologist.Good luck,GOD bless and if you'd like,keep me posted on your dealing with this mysterious condition.Thanks for responding and hope to hear from you soon

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Old 01-05-2013, 05:50 PM   #7
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Re: Essential Thrombocytosis (high platelets)

ET is an acquired or somatic gene mutation, so it isn't inherited. Throbocytosis is the inherited version. It IS possible that a gene can mutate due to chemical exposure.

 
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Old 01-05-2013, 05:58 PM   #8
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Re: Essential Thrombocytosis (high platelets)

Your daughter really needs to see a physician who will deal with her high platelets. Many people have phlebotomies to control the platelet count, but there are drugs too. I would change doctors!

 
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Old 01-05-2013, 06:05 PM   #9
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Re: Essential Thrombocytosis (high platelets)

To those with this condition, in addition to your meds, it is advisable to avoid dehydration, as that "thickens" the blood and predisposes to clots, avoid smoking (enhances clotting and plaque buildup within the arteries), and females should avoid hormone replacement therapy and birth control pills because of enhanced clotting. Infections will raise the platellet count, so they should be treated as early as possible. When travelling, move around frequently especially the legs, to prevent clots from inactivity and sluggish venous circulation.

 
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Old 02-24-2013, 07:50 PM   #10
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Re: Essential Thrombocytosis (high platelets)

Did you have any risk of blood clotting?
I am still researching this, as my husband was just diagnosed with ET less than a week ago. (He is 43) here is his story:

My husband has high platelets and high WBC...neutrophils are high.. After FORCING (i had to yell and cuss) our primary care dr to send him to hospital because of severe headaches....they did CBC and CT scan of his brain...said everything was fine....however...they didn't bother to tell us his platelets were almost a million, and his WBC was 14.2, neutrophils were 82. We were referred to Neurologist who ordered an MRI....they called us the next morning and said to go to the hospital and they had a room already ready for him, he was being directly admitted. MRI revealed Cerebral Venous Thrombis (in Left transverse sinus and sigmoid sinus...and partial thrombosis in superior Sagittal sinus)...in other words, his veins that drain blood out of his brain were clogged up with blood clots. We were in the hospital for 6days....they sent him home on high dose of blood thinners...saying he will be on them forever. So that was one problem. Now, back to bloodwork... A week later (last week), the Hematology Oncologist called us in with her results....he too has Essential Thrombocythemia. For now, he is on Coumadin, and HYDROXYUREA. I am trying to get him to see a MPD specialist in Arizona. Most HEMATOLOGISTS and Oncologists are not too familiar with this, as it is so rare, and just follow the so called protocol on how to diagnose/treat. I'm actually more concerned with the Thrombosis than the ET...as his neurological focal defects worsen everyday.

 
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