I Have Essential Thrombocytosis

A Essential Thrombocytosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Essential Thrombocytosis. You're not alone. 73 People


    Have recently been diagnosed with E.T. Have been on Hydrea for close to 3 weeks now. I am feeling pretty frightened by this diagnosis. Would like to have someone who understands how I feel to talk to.
    Donis Donis
    66-70, F
    3 Responses Aug 13, 2013

    I Have Essential Thrombocytosis And I Am Trying To Get Pregnant.

    Hello, I am 35 years old and new to the site. I am trying to find people who have advise or experience getting pregnant with ET. I have found some information on the internet but there are no personal stories. I was diagnoses a year ago and it has been hard trying to cope...
    cholli cholli
    36-40, F
    4 Responses Nov 5, 2013

    I was diagnosed May 2014

    after seeing my GP for hip and lower back pain. She referred me to an orthopedic doctor for further review who did an MRI of my back after determining I needed a hip replacement first. The MRI revealed abnormalities in my bone marrow so I was sent back to my GP. There blood work...
    Deelue Deelue
    51-55, F
    Jul 12, 2014

    I was diagnosed with ET back in 1987.

    ..I have been there and done that with the condition. I was diagnosed with Jak2 also. Platelet levels at times went up over a million, had TIA's and times when I collapsed (ended up in emergency resuscitation in hospital emergency dept) and had the most awful headaches that...
    Healed1 Healed1
    51-55, M
    2 Responses Dec 4, 2014


    Just recently been told I have Essential Thrombocytosis and started on Anagrelide today and just wanted to connect with others to keep on top of ideas, thoughts, concerns and experinces with everyone else
    lifechanges48 lifechanges48
    1 Response Jun 9, 2013

    My Life With ET...So Far

    I was diagnosed with ET about 7 years ago right before my kidney transplant. Initially it was treated with 325 mg of aspirin a day. My platelets still ran as high as 1.3 million so my hematologist eventually put me on Hydroxyurea and 81 mg of aspirin. My platelets now run in the...
    jessily jessily
    Jul 11, 2013

    E.t. For Me

    For about a year, I hwas having a weird throbbing pain in my fingertips and toes, as well as some really scary episodes of dizziness which may have been TIA's. My WBC was high so blood tests became more common. Then they found high platelets and the JAK2 mutation. Now I'm on two...
    scottmeeker scottmeeker
    46-50, M
    3 Responses Feb 23, 2012

    20 Yr Old, Female, University Student - Recently Diagnosed With ET

    Hello! I have within the last 5 months been diagnosed with ET. I turned 20 three months ago and started uni last October (1 month before my official diagnosis.) In December 2012 I was put on hydroxycarbamide but only for a month as I was "intolerant". I was then on Anagrelide...
    KatAlexia KatAlexia
    22-25, F
    3 Responses Apr 1, 2013

    I am 34 years old, and was diagnosed with

    Essential Thrombocytosis seven years ago. (My platelet count ranges from 700,000 to 850,000). I always knew that I wanted to try to have a family, and knew that miscarriage was a higher risk for people with ET. My hematologist said it would still be possible and safe for me...
    sanfrancisco1979 sanfrancisco1979
    36-40, F
    1 Response Dec 22, 2013

    I was diagnosed with ET today

    and I want to know what to expect in the up coming months, years???? Help me
    mclaudia mclaudia
    51-55, F
    2 Responses Oct 10, 2014

    I've been diagnosed with ET on Monday.

    My current platlet count is around 1.3 mil. I'm currently having incomplete miscarriage. No D&C done yet as the doctors want to reduce the platlet count first. They want to avoid if there will be heavy bleeding during the procedure. This is my second miscarriage. Start with...
    iranadia iranadia
    31-35, F
    3 Responses Feb 26, 2014

    Living With Et

    hi my name is nicky i was first diagnosed with essential thrombocythemia almost 3 years ago. i am 46 years old .for the last 2 and half years i have been on asprin as my platlet count was 7 ,start of the this year 2013 i had to go and see my haematologist as my platlets strted to...
    xnickyx xnickyx
    2 Responses Apr 24, 2013


    Hello! I have got 23 years old. 3 years ago doctor told Me I have ET. I start with Hydroxycarbamide but now propably I start taken interferon alfa. Is someone with my age who took interferon? Please for exeperience. :)
    jula9090 jula9090
    26-30, F
    1 Response Nov 25, 2013

    Just Me

    I have recently been diagnosed with ET and although I have read a lot about it, I still feel alone and have so many more questions to be answered. I am 45 and have been unwell for a number of years, only to be told, it was all in my head!Just be nice to chat to people who can...
    gaygardiner gaygardiner
    46-50, F
    4 Responses Nov 1, 2011


    Yep, I am a newbie, to this site. We don't have enough support in this. In my life no one wants to talk about it and if they do listen they say "oh, your ok as long as you do as the drs say or you can get up and do things for yourself' umm, I know all that. I get scared sometimes...
    y247y y247y
    4 Responses Jan 10, 2013

    **It Happens: Living My Life With ET

    So I'm not super accustomed to this whole "share your story/feelings" thing but I decided that it might be a more productive use of my time than making off putting jokes or attempting to explain what I'm going/have gone through to the people around me who don't know what to say...
    M545 M545
    3 Responses Apr 28, 2013

    Happy To Find This Site..

    I was diagnosed with ET in 2011. Just started on hydroxyurea about 2 weeks agolittle over. Lucky me, I have also been recently diagnosed with crohns disease so I am on a few other serious meds. Last blood counts ( after being on HU for 10 days ) went up 50,000. Dr says this is...
    Suzl Suzl
    41-45, F
    2 Responses Jan 24, 2013

    I was diagnosed with ET in 1978.

    I was in my mid 30's and had no symptoms except for an elevated LDH in a routine blood panel. It took doctors a year to diagnose me but once I saw a hematologist, he knew immediately what I had. He put me on Myleran, the available drug of that time. After an initial round...
    shopgirl281 shopgirl281
    70+, M
    2 Responses Mar 1, 2014

    Drink Omega 3

    I have ET last 3 years on 2009. Now I'm 48 years old. Last 2 year I went to see the doctor and she ask me to consume omega 3 for 15 capsule (1000mg each) everyday. Now my pletelets down to 311 (8 oct 2012). I take hydrea 500mg once a day. Every month I check my blood and if the...
    Chanini Chanini
    2 Responses Oct 9, 2012


    I have had ET since I was late 60's. I've been on Hydrea for many years. My platelets have ranged between 600 - to over a million.. I've been on 1500 - 2000, plus an aspirin a day. I've tried the Anagrelide, but it caused a pain in the head so had to go back to Hydrea. I've never...
    Inq31msn Inq31msn
    70+, F
    2 Responses Apr 25, 2013

    I was recently diagnosed with ET last February.

    My platelet counts were in the 700 range then. I currently live in Japan for work and have no other conditions besides high blood pressure which is under control right now. However when I went home to the states in July they shot up to 1 million. My hematologist there started...
    Look4BeautyWithin Look4BeautyWithin
    31-35, F
    1 Response Aug 24, 2015


    I was officially diagnosed in 2009 with ET when I was 24, but carrying the symptoms since I was 20 without an idea of what was going on. When I was 12 was when I noticed I had an slightly elevated platelet count, but it wasn't high enough to cause problems. As I got older, the...
    Recowa Recowa
    3 Responses Sep 8, 2012


    Hello, I went for a well check and after routine blood work I was told my platelets were high (610,000) I went to specialists and had more blood work and bone marrow biopsy. I was told last week I am positive for the JAK2 gene and I have ET. I am still trying to wrap my head...
    Kaw64 Kaw64
    51-55, F
    3 Responses Aug 7, 2013

    I Plan To Make 95 In Good Working Order!

    Hi my name is John. I always went to the Doctor for Birthday checkups, never ill, last sick days for the Asian Flue 1958 worked till I was 75. Non smoker non drinker thin and fit. 2008 my Doctor says your platelet count has been going up each year from 500 years ago to 110...
    Scouser2 Scouser2
    70+, M
    Sep 7, 2013

    Have I Got Et

    Hi fellow members I have had numerous bl0od tests over the past 2 yrs as my platlet count has been between 600-972. I went to see a haematologist last week and she told me it is very likely you have a condition called ET which is blood cancer! She doesnt know how or why ET...
    cpuxjoan1 cpuxjoan1
    Dec 3, 2012

    Diagnosed 2009

    June 2009 I had some regular lab work done and my doctor noticed my platelet count was really high. He suggested I see a hematologist. My first hematologist scared me into thinking I had cancer, I had a really unpleasant visit with him decided to get a second opinion. That second...
    faithinthegospel faithinthegospel
    22-25, F
    2 Responses Nov 12, 2011

    Me Too With Et

    I was diagnosed in 1999 after having blood clot in my left leg. I was 19 when diagnosed. Platelet count at that time was 1,1 million. First, I was put on Litalir and baby Aspirin and later on Interferon 3x3 MIU weekly, now 2x6 MIU weekly, all the time taking one baby aspirin a...
    oktavija oktavija
    31-35, F
    3 Responses Jun 26, 2012

    Hi, everyone. I was diagnosed with ET about a

    month ago (along with the JAK2 mutation and a severe iron deficiency anemia). My platelets were not so, so high, but high enough that the oncologist put me on 500 mg. of Hydroxyurea. My platelet count was 670,000. The oncologist, though, said that having the anemia, which is...
    Rio91 Rio91
    61-65, F
    Jun 3, 2014

    Trying To Laugh About Something That Has Me Numb.

    Just after my 20th birthday i was diagnosed with E.T, nearly a year on and i am still feeling very lost about it all.. I have this feeling of numbness about it all. I do have a wonderful haematologist looking after me but i'm still getting my head around it all. My platelet count...
    Christina33 Christina33
    3 Responses Mar 29, 2012

    Recently Diagnosed With ET; Trying To Find Best Meds. Looking For Positive Outlook

    Am 65 and recently diagnosed with ET. Hydroxy has not worked well. Tried two pills but side effects are too uncomfortable. I am taking a positive outlook because things could be worse.
    Calmnow1 Calmnow1
    66-70, F
    1 Response Aug 10, 2013
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