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!

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

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??

[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!

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, 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.

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.

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.

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

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!

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

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

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.

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.

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

Amy -

The side effects of Interferon can be quite bad and numerous (I've heard, though not experienced) - they include fatigue, flu-type symptoms, easy bruising, depression, appetite loss, heart problems... Like I've said, though, I haven't experienced any of this, maybe because my dose is so small.

The box of the interferon itself says that it isn't recommended for pregnant women (which I thoroughly questioned my haem about) but any ****** search on the treatment of pregnant women with Essential Thrombocythaemia will show up hundreds/thousands of hits recommending treatment with interferon and/or low dose aspirin - which is what I've been doing.

I'm 29 weeks along, and my ultrasounds have all been normal, with bubs growth right on schedule, and I've been told that a vaginal birth will be fine - they'll just keep some Heparin on hand in case of any trouble.

-Lucy

Lucy
Thanks for the input.
Were you diagnosed with ET before you knew you were pregnant or after?
Did you take any treatment before?
I am on HU stopped them for a few months to try to get pregnant but its taking much longer than i planned(5mnths to date). So i started taking them again this month since i will be running some tests so wont try to conceive this month. My dr detected some problem with my thyroid so i need to sort that out first.My haemo insists that i should take Hu until i am actually prego. And stop them when pregnancy is confirmed. but i am so afraid that this might lead to some abnormality to the foetus. i am also worried that these may result in genetic alterations hence effecting my eggs.
Recently i have also read that the use of HU at a young age may result in leukemia. Will you treat your condition after you give birth ? has your heamo suggested putting you on treatment?
Sorry for all the questions But its not an easy situation is it.
i d like to wish you all the best for you pregnancy. Is it a boy or a girl? Or do you prefer surprises. Take care of yourself
Amy

Hi I am new to the board, I like you have had the symptoms you describe. Although i do suffer from crippling headaches and dizzness which can last upto the best part of a week. My GP doesnt seem to be bothered even though i was in hospital recently with rectal bleeding. My count is over 495 and wonder if anyone will help. Do you get weakness and fatigue.

I will be following you to see how you get on with your DR. Can anyone else please let me know if they suffer from the same symptoms and what their average platlet count is.

Hi Sheila!
I posted in this thread earlier on with a slightly high count of 457,000. I had a recheck one month later and the count was down to 426,000. My doctor now wants to check them in 2 month but feels they are normalizing. I ,too, feel tired and fatiqued. I also have a least one headache a month that I am in bed all day. Once I was put on blood pressure medicine, my headaches have improved. I still feel like I need a nap , mentioned it to my doctor but she really didn't think too much about it! I don't really have an answer for you but would be curious if the platelets and fatique are related or not and wanted you to know that you are not alone!

Hi I'm a female 39 years old. I was diagonse with Essential Thrombocythemia bout 5 years ago. My platelet were over 1 mill. I have been on agrylin since then. I have some side affects, I get tired ofen and my joint hurt.

Hi I'm a female 39 years old. I was diagonse with Essential Thrombocythemia bout 5 years ago. My platelet were over 1 mill. I have been on agrylin since then. I have some side affects, I get tired ofen and my joint hurt.

Hi!
my counts never got that high (900s when I started meds).
The tiredness for me was one of the worst things. It's been much better for me now that my count is down (due to HU).

hi, im new to this page, i found this page recently, wen i was searching articles about Auto Immune Hemolytic Anemea. im having this problem since may, 2007. 1m 23 years old now. i hav transfused blood and now im on medicine. i started the steroid with 25mg and now it is reduced upto 10mg. But doc stil said to use for 2 more months. but last 2 weeks i thought stopping the med. just to stop to see what happenes. and my hb got low. headache and body ache started..my hb went from 11.9 to 9.6 within 2 weeks...so do u think that im goin to be ok without those steroids and folic acid....i hav now gained a lot of weight and im very fat than before.i hate to use the medicine......now my hb is 10.....so can u tell me something that u kno about this....do u thing that i will be ok......oh yea..im having the warm type.....and doc didn tell me if im inherited or acquired....but my father is a thelassemia carrier not a patient.....he is always aneamic...but need not to transfuse blood.....but i donno if its inherited or not.....im not a thelassemia carrier...im normal...im the only girl in my family having AIHA...i came to know thsi suddenly...but before even my blood never ever reached to 12...i remember....but this year, end of may, suddenly i came to kow this...cox i was very weak...when checked the blood it was 5...so after all the tests the doc said that im having autoimmune hemolytic anemea...before nobody knows that im having any problem..i look very healthy always...

thanks for listening....i just thought of finding a solution and still searching for many articles....
thanks...tc...and always :)

hi im not aware of ur problem

Hi, I am new here. I recently had 3 tests come back with high platelets. One being 649, the next 498, and the last at 536. I went back about 6 years to compare an older blood test with these recent ones, and found out that apparently it was high back then too. Two tests were done a few weeks apart at that time and both were in the 500's range. So I guess I've had high platelets for at least 6 years if not longer. I also noticed that my white blood count was always high too. In the range of 11-13 . It seems my monocytes were the high factor in the wbc. Other than that. The rest of my blood work came back fine. I originally went in for a physical type appt. I thought maybe I had some problems with my thyroid , as I had gained some weight, and had been diagnosed years ago with 3 thyroid nodules. So they did a thyroid test, along with a cbc w/diff, and a cardiac profile, and a cholesterol type test, which all came back perfect(except for the high platelets and high wbc) So basically I'm just stuck here with high platelets and high wbc. Symptoms I've had are my ankle joint hurts a lot , I have very bad carpel tunnel in both hands/wrists/arms. I have/had neck pains, shooting into my temple, and a very specific localized stabbing pain in my upper left back. And also left lower rib pain. And also, I have had bouts of vertigo, and I have tinnitus all the time.
Any idea what this could all indicate? Anyone with any of the same type of things? My doctor wants me to wait a few months and have another cbc to look at the platelets . I'm not sure I will wait before asking him to refer me to a hemotologist. If I had the high platelets 6 years ago, and still do, I'm sure they aren't going to suddenly go down to normal.

I am a female, 37 years old and was diagnosed with Essential Thrombocythemia back in 2001 after a routine blood test at a physical. Had no idea what platelets were! I was on Agrylin for 5 years, it really brought my numbers down. Only side effects were migraines in the beginning and heart palpitations. I went off meds last year and my numbers were in 600 range. Now a year later.. up to 1.7 million as of today! Very scared. Doctor prescribed Hydrea this time and I start tomorrow. I am not looking forward to it, but it is what it is!!

You should go see a hematologist. I had a bone marrow biopsy to rule out cancer back in 2002. High platelets can come from infection, pregnancy, cancer, etc. etc. The BMB rules out all others and when they have no explanation for it, they call it ET. Good Luck!!

Nikki with ET in Colorado

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!

Hello Nannie: I tried to answer before, but I am new to this and not sure it if went through. I was diagnosed with ET a few years ago. I am 37 yrs. old now. My platelets were around 600.. my doc sent me to a hem. I then had a bone marrow biopsy to rule out cancer and other causes. You mentioned you moved to Colorado. I also moved to CO one year ago. High altitude raises platelets levels, so that maybe a reason it is higher than before. I think you should see a hemotologist and get tested. There are other things that elevate platelets like infection. I was on Agrylin for 5 years back in CA, the doctor here in CO said I don't need them unlesss over 1 million.. well, today I am over 1.7 million so tomorrow I am supposed to be starting Hydrea. I have no symptoms.. I am tired, but I am a mom of 2 so I usually chalk it up to that. I do bruise easily lately since the plts went this high. I am very scared to start this new medicine since I heard some nasty effects. Good Luck.
Nikki

I am a female, 37 years old and was diagnosed with Essential Thrombocythemia back in 2001 after a routine blood test at a physical. Had no idea what platelets were! I was on Agrylin for 5 years, it really brought my numbers down. Only side effects were migraines in the beginning and heart palpitations. I went off meds last year and my numbers were in 600 range. Now a year later.. up to 1.7 million as of today! Very scared. Doctor prescribed Hydrea this time and I start tomorrow. I am not looking forward to it, but it is what it is!!

You should go see a hematologist. I had a bone marrow biopsy to rule out cancer back in 2002. High platelets can come from infection, pregnancy, cancer, etc. etc. The BMB rules out all others and when they have no explanation for it, they call it ET. Good Luck!!

Nikki with ET in Colorado

Hi Nikki, and thanks for your reply. I do know that it is not an infection or pregnancy as I've had the high levels for at least the last six years. That would be a long time for an infection to last. But with just my wbc and platelets being high, and nothing else, I think I'm looking at either ET or rheumatoid arthritis. I guess I just have to wait and be patient until my doctor figures out what to do with me. I've only talked to him on the phone since I found out I had the high platelets. I assume I will be tested soon for these things. Either way, I know the outcome will definantely not be good. All this has just been worrying me, and I worry constantly about everything anyways. I just want to know what I have so I can start to change the way I do things, and exercise , eat healthy, etc... so that my body can be strong for whatever it turns out to be. I figure that whichever one of the diseases it turns out to be that at least now, while I'm not having many symptoms, I can get my body in shape for what I have to deal with . Thanks again, and good luck with your numbers going down :)

I don't know why you haven't been seeing a hematologist to begin with. When my GP picked up high platelets during routine exam he quickly sent me to a hematologist. Yesterday my counts were 700,000....my wbc was also up. My hematologist has told me this is acute illness and any inflammation or infection can drive up the counts. Sadly enough, I never know when or if they are up. I get blood work monthly. I take agrylin and hydrea. Do you know of any natural sources that can help with the decrease of platelets? I worry all the time and I am sick of seeing doctors.....always a problem. I once had counts over a million, scared the hell out of me. Anyway, I suggest you do see a hematologist asap! Good luck....let me know what happens

Hello everyone!
I just found this site.
My wife, 43, was diagnosed with ET 6 months ago. She had a bone marrow test which confirmed that. She also has a JAK2 mutation ( I don't know if it's positive or negative). She is getting PegIntron every 14 days.
I see that a lot of people went to the Mayo Clinic to see Dr. Tefferi. Can somebody tell me how to make an appointment to Dr. Tefferi directly? Or we have to see some other doctor before?
Thank you for your help.

Hi,
I am a 41 year old female that is also JAK2 positive. Diagnosed about a year ago with 1.2 million. I take hydrea, it controls the platelet count without significant side effects. I feel most comfortable at about 600,000, not too much medicine and my white blood count stays reasonable. I am very interested in what kind of doctor prescribed the PegIntron and how it controls your platelet levels. Has your wife had significant side effects? What are/were her levels? I have considered U of M (I live in Michigan) and Mayo. I may try one of them this summer. My hemo and primary care don't see a problem with me being on hydrea for the rest of my life, but I would love to find a different solution. I know there is a study in Texas with a drug like PegIntron that is usually used to control Hep C. You are the first person I have talked to that is also dealing with a JAK2 mutation.

Her hemo is a professor in NYU medical cancer center.
As I know PegIntron is one of the treatments for ET:
http://www.leukemia-lymphoma.org/attachments/National/br_1178803674.pdf
http://www.cancer.gov/cancertopics/pdq/treatment/myeloproliferative/HealthProfessional/page6
http://www.emedicine.com/med/topic2266.htm
http://www.siematologia.it/files/Linee%20Guida%20Trombocitemia%20Essenzia le.pdf
Doctor said that it was proved that in 60% cases it had a positive outcome.
But it is not approved by FDA for this disease, it’s still on trial, so it isn't covered by the insurance and it is very expensive, $500 per shot).
Usually you have to have a shot every week during 6 month. But because my wife is very sensitive to PegIntron, he change it to once per 2 weeks. There are some side effects but then more shot you have then less are side effects.
Her plated count is normal now (250 000 - 350 000) and highest she had was 600 000.
The other problem she has is an enlarged spleen and MRI showed some intensity in her bone marrow.
Again, each doctor has a different approach and each individual has a different case of developing this disease.
Fortunately scientists develop something new each year. Her hemo said that there are already some trial drugs to stop Jak2 mutation. Let' hope for the best.
I wish you the very best.

Thanks for the info. I started at 1.2 million and if I use enough of the hydrea to get down to a "normal" level, I get anemic and my white blood counts suffers. I will talk to my hemo at the next visit and see if he has information for me. Thanks and good luck to you too. If I do go to mayo I will post to let everyone know their approach.

I am 43 years old and just got my blood tests back. While can't understand what the tests mean, it noted I have high platelet level at 494. While this is a bit over the norm, I read there are different factors for this. I have been on oral contraceptives, and it could be the reason. I also have a fungal infection, which I have had for awhile. The nurse practition thought I was having an allergic reaction and prescribed me some cream and told me to use soap for sensitive skin. I did see me regular doctor who told me it was fungal. Joy. Hi am now on fluconizol that should help. I had my tests that day and just got them back the same day. That was quick. As soon as I get answeres I will know whether I need more tests or to wait until this fungal thing is gone. If it then goes down, hopefully, then that will be the end of it. I know that weight can have something to do with it. I am overweight, but my tests have always come back okay. I was concerned that I would have diabetes.