It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Blood and Blood Vessel Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-01-2007, 09:07 AM   #1
Senior Member
(female)
 
Join Date: Apr 2005
Posts: 101
nannie8 HB User
Any advice or thoughts appreciated! High Level Platelet Count

Hi; I posted earlier but got no replies, so maybe I just listed too many things in my prior post! One basic question to make it easier is this: What are the causes of high platelet counts? With a family history of heart disease, stroke, etc., I am scared. I had tests done yesterday (complete CBC, inflammation tests, other labs) and a complete pulmonary function test as well.

In the meantime, I worry that these will come our normal (go figure; I worry that it's normal!) and I still won't know what the cause of this is!

I'm 41, I smoke (trying to quit) and generally feel crappy much of the time. I'm on synthroid for hypothyroid (started taking after the high blood platelet count, so I can't blame that) and Lipitor (also started taking after the high platelet test) for high cholesterol.

I like to be active, but I'm afraid to pursue the things I like to do on the weekends since I moved to Colorado (cross country skiing, etc.) until I find out what's going on here; I don't want to have a stroke on Grand Mesa, miles and miles away from the nearest hospital!!

Any thoughts? I'm new to this platelet thing and just want to know what some of the causes can be and what I should look out for. Thanks!

Last edited by nannie8; 02-01-2007 at 10:27 AM. Reason: No replies

 
Old 02-01-2007, 12:16 PM   #2
Veteran
(female)
 
Join Date: May 2006
Location: Syracuse, NY
Posts: 356
marymk HB User
Re: High Platelet Level

Hi,

Do you know what your acutal number is? I have had slightly eleveated platelets a couple of times, and then the last time they were at the high end of normal. If I remember my 'high' counts were somewhere around 453,000 (normal being aroiud 400,000 -depending on your lab). Anyway - mine were not too high, considering what some people on the board have posted.
I'm also hypothyroid (on synthroid) and have high cholesterol - I'm trying to control that with diet and exercise.
I also feel crappy on and off - I usuallly blame my thyroid, since I don't think my platelets are high eneough to matter (neither does my doctor),

Hope your test's come out OK. Since your fairly new on synthroid, you may need your does adjusted before your feeling better. After 10 years, I sometimes need a dose change.

Hope this helps.

Mary

 
Sponsors Lightbulb
   
Old 02-01-2007, 01:52 PM   #3
Senior Veteran
(female)
 
Join Date: Jun 2005
Location: United Kingdom
Posts: 1,279
MAD MAZ HB User
Re: High Platelet Level

Hi I also have high platlets normal range up to 400,000 mine was 550,000 that was about 2 months ago!!

Just had platlet Level done again this time mine is now 505,000 so its still high doctor said this is not to high to worry.


Guess what, I also have under-active thyroid hashi's!!

I think we seem to get so many things go wrong with this crapy thyroid...

just had my cholesterol and it was 4.8 is that good!!

I have been so ill with pain under my ribs, also I have inflammation of the duodenum, DO ANY OF YOU HAVE STOMACH PROBLEMS??

 
Old 02-01-2007, 02:57 PM   #4
Junior Member
(female)
 
Join Date: Apr 2006
Posts: 44
Genessa HB User
Re: Any advice or thoughts appreciated! High Level Platelet Count

[QUOTE=nannie8;2776048]Hi; I posted earlier but got no replies, so maybe I just listed too many things in my prior post! One basic question to make it easier is this: What are the causes of high platelet counts? With a family history of heart disease, stroke, etc., I am scared. I had tests done yesterday (complete CBC, inflammation tests, other labs) and a complete pulmonary function test as well.

In the meantime, I worry that these will come our normal (go figure; I worry that it's normal!) and I still won't know what the cause of this is!



Like the others have said, how high is your count?
IF it is not higher than the upper 400s, 500s, could just be your normal level.

Otherwise, there are a few things that will make your count go up.

One thing to hope for - that something occurred to you (surgery, infection) that caused "reactive thrombocytosis" or an increase in platelet growth as a "reaction". Another, easily treatable thing would be anemia.
You could have a problem with your spleen. OR you could have one of the myleoprolific blood disorders. (Essential thrombocytosis, polycythemia vera, {I have ET, I'm blanking out on the others}. The docs don't know what causes people to develop mpds, although they have recently discovered that some people with mpds have a mutation on one of their genes. There is some speculation that exposure to certain chemicals can be a factor - but nothing definitive that I know of.


First, get the results of your tests and speak to your doctor. If he/she thinks it's necessary, you'll go to a hemotologist.


I had a slowly, but steadily rising platelet count for years, but was sent to a hem when my counts went into the 500,000s. I had a bone marrow biopsy done to try and narrow down a diagnosis.
When my counts got into the 700s, I started "feeling" it. My experience is atypical, however. Many people, most people, are asymptomatic until the count is over 1 million.

You need to know, however, especially since you have a history of stroke in your family. It isn't that stroke causes high platelet counts, but that high platelet counts can lead to stroke. And, from my point of view, early diagnosis means better info and better prevention!

Good luck and good health!

 
Old 02-05-2007, 02:24 PM   #5
Junior Member
(female)
 
Join Date: Feb 2007
Location: WV
Posts: 29
sal5683 HB User
Re: High Platelet Level

I, too, have been told of a high platelet count (457,000). I have high blood pressure which I just started taking medication to lower, have headaches at least once or twice a month and feel tired. I think I may have almost a rushing feeling from my knees down..not all the time but very subtle. Do any others have similiar symptoms? I am having my platelets rechecked in a few weeks but, like others here, am worried.

 
Old 02-05-2007, 04:32 PM   #6
Junior Member
(female)
 
Join Date: Apr 2006
Posts: 44
Genessa HB User
Re: High Platelet Level

Quote:
Originally Posted by sal5683 View Post
I, too, have been told of a high platelet count (457,000). I have high blood pressure which I just started taking medication to lower, have headaches at least once or twice a month and feel tired. I think I may have almost a rushing feeling from my knees down..not all the time but very subtle. Do any others have similiar symptoms? I am having my platelets rechecked in a few weeks but, like others here, am worried.

I have/had the "rushing"/"flushing" feeling between my knees and ankles. I had it sometimes 3 times a week, sometimes less, sometimes more, couldn't pinpoint it. I told both my internist and hem about it and neither of them could tell me what it was. I visit a list for people with MPDs and a dr there said aspirin might help, it might be blood causing it, but I was taking aspirin already.
Once I started on hydroxyurea and my platelet count went down, the feeling stopped almost for good - now I get it maybe once every couple of months.
It was kind of a rushing/flushing burn, but not hot to the touch or painful. A woman I "met" on another board also experiences it - she is on one of the interferon mixes - I'll ask her if she still gets the feeling.


My internist prescribed the hu for me when I went to see her one day with an excruciating headache. My pressure was sky high, too (and I'm on bp meds). She felt it was better safe than sorry, especially with a family history of stroke. I made a new appt with the hem that same day and by the time I saw him 3 weeks later, my count had dropped from the 900s down to something much lower (brain freeze right now). What I really didn't expect was having a million times more energy and really feeling better. Because I was doing so well, the hem kept me on the hu, even though he normally doesn't prescribe it to anyone with counts under 1,000,000.

Good luck, and while it is useless advice, try not to worry.

 
Old 02-05-2007, 06:17 PM   #7
Junior Member
(female)
 
Join Date: Feb 2007
Location: WV
Posts: 29
sal5683 HB User
Re: High Platelet Level

Thank you Genessa..great advice..also it's good to know that I am probably not imagining things with the "rushing" feeling. I am trying to look at it so if my platelet count and other symptoms do amount to anything or are related in some way that at least I will be able to be properly medicated, exercise or whatever to feel my best, like having more energy like you described.

 
Old 02-06-2007, 02:47 AM   #8
Junior Member
(female)
 
Join Date: Apr 2006
Posts: 44
Genessa HB User
Re: High Platelet Level

Quote:
Originally Posted by sal5683 View Post
Thank you Genessa..great advice..also it's good to know that I am probably not imagining things with the "rushing" feeling. I am trying to look at it so if my platelet count and other symptoms do amount to anything or are related in some way that at least I will be able to be properly medicated, exercise or whatever to feel my best, like having more energy like you described.
that's the best way to look at it!

I'm not thrilled to know I have ET, but I am thrilled that I am much more watchful for strokes and that I am feeling better. Aside from having no energy, last winter I went from one sinus infection to a bronchial infection to an ear infection and in between had cold after cold. This winter, so far, one sinus infection and I recovered much more quickly.

 
Old 02-06-2007, 03:03 PM   #9
Senior Member
(female)
 
Join Date: Apr 2005
Posts: 101
nannie8 HB User
Re: High Platelet Level

Thank you all for your replies. Well, I just got my results in and my platelet level is now down (it was 522) to 403! So who knows what caused that? The first time I had it checked it was 422, then 522, now it's 403.

I also got the news that my cholesterol has gone down (due to the Lipitor, I'm sure) from 290 to 204; Triglycerides: 162, LDL: 133 and HDL: 38. So I will stay on the Lipitor for a while and keep getting monitored. I'm only on 10 mg a day of Lipitor. My Synthroid seems to be working and I was told to stay on my current dose.

I'm thrilled that these came out so well, but I still wonder why I get all of these weird symptoms indicative of auto-immune...itching, rashes, joint pain, rib pain, fatigue, general malaise, puffiness under my eyes, dry eyes, dry skin, red, blotchy palms, etc. I guess I'll have to keep wondering. My doc did some preliminary tests for inflammatory type conditions and those came back normal. I don't know how to pursue this, but with insurance the way it is, I'll probably have to wait and see. Does anyone know what the tests for ET and related disorders are?

My pulmonary work up came out normal as well.

For the person that asked about abdominal issues, I have many. Pain in the upper abdomen, constipation, stomach pain, extreme bloating. I have no idea what is causing it, other than IBS...but I have suffered from stomach issues most of my life. I've also had an unexplained inflammation of my intestines (was hospitalized a few years ago). Bad genes I guess.

Anyway, I guess I have to play a waiting game unless I can figure out what exactly I should be tested for.

Thanks again for all your replies and I hope you all are feeling well.

Nanette

 
Old 02-06-2007, 06:27 PM   #10
Junior Member
(female)
 
Join Date: Apr 2006
Posts: 44
Genessa HB User
Re: High Platelet Level

Quote:
Originally Posted by nannie8 View Post
Does anyone know what the tests for ET and related disorders are?


Nanette
Nanette,

Most of the mpds are diagnosed by ruling out other things. Usually they test your ferritin level (stored iron) to rule out anemia. They do a hands-on test on your spleen and I had a sonogram to check out the spleen.

Then I had a bone marrow biopsy which differentiates (sometimes) one mpd from another.

But, the chief "symptom" is high platelets and 403 is NOT high! Since it went up and then down, might have been a "faulty" test, might have been a reaction to an infection of some sort - and with your other problems that seems possible???

Your doc will probably just keep checking your platelet count regularly now.

Good luck and good health!

 
Old 02-07-2007, 09:05 AM   #11
Senior Member
(female)
 
Join Date: Apr 2005
Posts: 101
nannie8 HB User
Re: High Platelet Level

Hi and thanks. The reason I asked about what testing I should look into is because of my other symptoms...I know auto-immune diseases are difficult to diagnose. I was sick over 20 years ago with inflammatory conditions (pleural effusion, pericardial effusion and various other serious illnesses along with HYPERactive thyroid) and the doctors scratched their heads and said "sounds like auto-immune disease" but never pinpointed the actual diagnosis. I do believe I have something underlying that is causing these symptoms, but it is yet to be diagnosed.

I'm just not sure which avenue to pursue.

Thanks!

Nanette

 
Old 02-13-2007, 08:52 AM   #12
Newbie
(male)
 
Join Date: Feb 2007
Location: Minneapolis,MN, USA
Posts: 1
MikeinMN HB User
Re: High Platelet Level

NEW MEMBER: TO ALL : PLEASE READ AND RESPOND: I will be writing messages for my husband Mike, who has essential thrombocytosis, high platelets. (He's doesn't do well on the keyboard....)
Mike has had this disease since 1991. He had platelets in the millions when he was first diagnosed, had a bone marr. biopsy, took agrilide, then Hydroxea, and went on to take Intron A just a year after his diagnosis. His platelets stay around 600 or so, moving down and up slightly. I am reading the message board and dont' see many of you taking the intron a injections. I am wondering why his oncologist is having him take that for so many years and many of you have that level of platelets.
Questions:
Are any of you on Intron A, and if you are, what type of things do you get from taking the intron? Mike gets painful cramps in his legs, arms, body etc. they are different from a regular leg cramp that you can walk off when your potassium is low. His is not.
He is male, age 50 this year and has had it since he was 36 yrs old.
Do you doctors say that you do not need intron?
Are any of you in the Twin Cities or close to us where you would be using the same doctors?
Not too many male patients on the message board, how old are the males that have this?
I am concerned about him using the medicine for so many years.
He get flu like symptoms from taking the intron a and hydrea.
We would like to hear from as many people as possible.
I am questioning why he is using so much medication . Worried about the damage and long term affects of the meds.
He gets very tired from using the meds too. His life changed drastically after using the meds.
Please respond and give us your story. Any of you who are in the Twin Cities, let us know.
Thanks and God Bless you all.
Wife of Mike In MN

 
Old 02-27-2007, 04:46 PM   #13
Junior Member
(female)
 
Join Date: Apr 2006
Posts: 44
Genessa HB User
Re: High Platelet Level

Quote:
Originally Posted by MikeinMN View Post
NEW MEMBER: TO ALL : PLEASE READ AND RESPOND: I will be writing messages for my husband Mike, who has essential thrombocytosis, high platelets. (He's doesn't do well on the keyboard....)
Mike has had this disease since 1991. He had platelets in the millions when he was first diagnosed, had a bone marr. biopsy, took agrilide, then Hydroxea, and went on to take Intron A just a year after his diagnosis. His platelets stay around 600 or so, moving down and up slightly. I am reading the message board and dont' see many of you taking the intron a injections. I am wondering why his oncologist is having him take that for so many years and many of you have that level of platelets.
Questions:
Are any of you on Intron A, and if you are, what type of things do you get from taking the intron? Mike gets painful cramps in his legs, arms, body etc. they are different from a regular leg cramp that you can walk off when your potassium is low. His is not.
He is male, age 50 this year and has had it since he was 36 yrs old.
Do you doctors say that you do not need intron?
Are any of you in the Twin Cities or close to us where you would be using the same doctors?
Not too many male patients on the message board, how old are the males that have this?
I am concerned about him using the medicine for so many years.
He get flu like symptoms from taking the intron a and hydrea.
We would like to hear from as many people as possible.
I am questioning why he is using so much medication . Worried about the damage and long term affects of the meds.
He gets very tired from using the meds too. His life changed drastically after using the meds.
Please respond and give us your story. Any of you who are in the Twin Cities, let us know.
Thanks and God Bless you all.
Wife of Mike In MN

I "know" a few people who are taking inteferon - one of them Pegasys?
Some docs prefer one med for one patient and one for the next. It is very individual.
There are some great resources on line - do a google research with essential thrombocythemia, essential thrombocytosis, mpd, etc.

 
Old 03-02-2007, 12:56 AM   #14
Newbie
(female)
 
Join Date: Mar 2007
Location: Australia
Posts: 5
lucy1880 HB User
Re: High Platelet Level

MikeInMN,

I am currently taking Interferon Alpha as well as aspirin. My haem chose to put me on this medication as I am pregnant and the Interferon will not harm the baby. I haven't had any bad responses to treatment, but my dose is a very low one at 1.5 million units thrice weekly. My platelet counts prior to treatment were 1.254 mil and have dropped to the 600's. The haem doesn't want to increase my dose for fear of my developing the side effects - from what I understand they're very common and I've been incredibly lucky to react to the Interferon the way that I have.
Being that I'm 26 and female, I'm probably not very helpful in your husband's case, but this has been my experience anyway.

 
Old 03-02-2007, 10:57 AM   #15
Senior Veteran
(female)
 
Join Date: Nov 2006
Location: Europe
Posts: 2,545
Amy 333 HB User
Re: High Platelet Level

Lucy

Hi my name is Amy i am 27yrs old . Diagnosed with Et around 3 years ago and presently trying to conceive. Had a miscarriage last summer . My heamo prescibed Hu to keep my platelets in control . Now stopped them though would like to know as much as possible about Et and pregnancy since info where i live is so limited.
WHat are the possible side effects of the interferon? ARe the side effects to you or to the baby? Do they have any long term effects on the foetus? How far along are you?

Amy

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
functional B12 deficiency and high platelets rowes Blood and Blood Vessel 2 07-26-2010 08:08 AM
Low ferritan count & high platelet count Exhilia Anemia 3 04-23-2009 01:57 PM
Is DH's platelet count to high? Seabreezes22 Blood and Blood Vessel 2 02-13-2009 04:43 PM
high platelet level angel89 Blood and Blood Vessel 1 12-12-2008 09:22 AM
Essential Thrombocytosis (high platelets) Nicole326 Blood and Blood Vessel 36 03-23-2008 12:06 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



midwest1 (9), Pottsey1 (7), ladybud (7), Cangal (6), japlopper (4), femmedeviant (3), jennifer2019 (3), drs (3), BiggerMac (2), vad (2)

Site Wide Totals

teteri66 (1168), MSJayhawk (1000), Apollo123 (899), Titchou (836), janewhite1 (823), Gabriel (758), ladybud (748), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 02:57 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!