Introduction

Hello, I was diagnosed with essential thrombocythemia September of 2015. I've was having symptoms of itchy skin, fatigue (like I had been in battle all night). My GP ordered blood work and found my platelets at that time were in the 600's. I was sent to a Hematologist who ordered a BMB, couldn't find anything conclusive so I was ordered to take a baby aspirin and get my blood drawn every week. Once my platelets reached 966, I had another BMB and they found ET, so I take 1500 of hydroxyurea which is lowered my platelets. I'm joining different support groups to get more understanding about ET. I have more symptoms now, but at least I'm learning to live with this and starting to understand.

7 Replies

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  • Welcome to the forum.

    It's great there are so many of us

    Sharing.

  • Hi, I was diagnosed with ET a few years ago, I did feel tired and occasionally had itchy skin, but didn't think that was a sign of anything (just getting older!). A random blood test showed raised platelets, I was referred to hospital, had a BMB, and put on aspirin. When I reached 60 my platelets rose over 1100 (as predicted by the haematologist) and I was put on Hydroxycarbamide over two and a half years ago. It was very scary, especially when I Googled it and believed everything I read! I have got more information, and a great deal of reassurance, from this forum, more than the hospital. I realise now that I don't just have days to live, I don't glow in the dark (although think of the savings on the electric!) my life is more or less "normal". I get a few side effects, most disappeared as my body got used to the drug. I also realise I could have something a hell of a lot worse wrong with me and am grateful for that.

    Anyway welcome to the forum I hope you gain knowledge and comfort from it!

    Best wishes

    Lizzie

  • Hello and welcome.

    I was only diagnosed in November and have only recently joined this forum myself.

    You will get lots of information and support from everyone on here. It has really helped me with my understanding of this disease that's for sure.

    Karen.

  • Hi cbreeze, I have had Et now for 30 years and have taken HU about 1000mg a day now, but 1500mg in the early days . Platelets were just over 2000 at first and I felt terrible . Now they are normal and I feel pretty good but do have days when energy levels are low . Generally once diagnosed our life expectancy should not be much lower than the normal. I do have a blood venesection about every 8 weeks to keep my packed cell volume below 0.45. I found itch feet got better when platelets were normal.

    Now 71 and still going

    all the best

    Town Crier

  • Hi and welcome. I was diagnosed with ET in July 2012 aged 51 following a portal vein thrombosis. I had been suffering from extreme fatigue, headaches, itchy skin in fact was thoroughly 'out of sorts'. I had never heard of myloproliferative neoplasms let alone ET. Was pretty shaken and worried. I joined this forum which together with support of my haematologist provided me with lots of knowledge which helped me to understand and accept what I had. I take aspirin and hydroxy too.

    Fast forward 3 and 1/2 years and things are so much better. I now only take the hydroxy twice a week, whilst I still feel incredibly tired at times other symptoms all but gone. I work full time and lead a pretty normal life. I just try and ensure I take care of myself and follow the good advice I have read on here about staying hydrated etc.

    It is early days for you and may take little time to find best dose of meds etc and for things to settle.

    Maz who reruns forum is great and there is lots of info on MPD voice website.

    Best wishes Liz C x

  • Hi chreeze , it's all so very new to you ,

    by the sounds of things your doing quite well , and long my it last ,

    I also have ET was dignosed after a

    Mini stroke 3 years ago , my platelets were 900+ , but since then Mrs have brought it down to 380 , I take Hydroxicarbomide , Clopadogrel & simvistatin , 4x.1,000 ,3x 500 mg

    My health is good I get 12 wkly check ups

    I get a lot of fatigue ,bone pain &

    mouth ulcers , but it's all under control

    It's a desease we know little about but like you I joined this forum & Gained lots of knowledge & some lovely friends ,

    Nice talking to you

    Take care

    From Pam Newcastle uk x

  • Hello Cbreeze, welcome to our forum, you can see from the replies you have already received that we are a very welcoming and caring bunch of people, so don't be afraid to ask any questions you have, we will do our best to answer them for you. If you would like any printed information about ET, Hydroxycarbamide and aspirin then please email me at maz.cd@mpnvoice.org.uk with your full postal address, I would also suggest that you look at our website mpdvoice.org.uk which has lots of very useful information on as aspects of ET and the other MPNs, MF and PV. Best wishes, Maz

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