ET at 26!!

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I was diagnosed with ET last year when I was only 26. I go to hosital every few months to have my placelets counted. They have never been higher than 950 but never lower that 650!! I am on daily asprin which has caused me to get acid reflux!!! And now on a daily table to control it!!!

A few years ago I suffered from a bad experience of vertigo (before I was diagnosed) and it seems to be getting worse. Just wondering if anyone else suffers with dizziness as i know that it can be a symptom. I have they usual fatigue that I think everyone gets but I am starting to get down about always being lightheaded and dizzy.

We are planning on starting a family later this year and the stories I have read about spontaneous miscarrages really scares me! All I have ever wanted is to be a mum and I am worried that I wont be able to have the baby we both really badly want!

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13 Replies

  • Posted

    hi,

    diagnosed Et last year, just months after getting a vasectomy reversal!! now dont know what to do for the best. My girlfriend deserves to be a mum but I dont know what the risks are, also the hydrea sems to be killing my little soldiers off

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  • Posted

    Hi, i was diagnosed with ET when i was 25, im 34 this yr. I wanted to reply to your post as i have 2 children, my 1st child i had b4 i was diagnosed with ET but my second son is 4 this yr and so i had a pregnancy while being treated for this condition. When i 1st found i was pregnant i was on hydrea, they took me off it and tried inteferon alpha (injections), my count went sky high so was put backon hydrea. My pregnancy went great :-) , i was checked every couple of wks and also had few more scans than usual to check baby was ok. Currently taking anagrelide for controlling count and daily asprin, i get the headaches and lightheadedness everyday. I understand exactly how ur feeling with you saying it gets you down. Hope all goes well with you starting your family, try stay positive as thats what i keep telling myself!, take care,Claire x
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  • Posted

    hi claire,

    thank you for that. i have no idea what the long term prognosis is and i dont want to leave her alone if i go, my speciaLIST is rubbish and has no interest in me. half the time i dont know if its the condition or the tablets effecting me, i work 24/7 shifts and find myself totally worn out but also never seem to sleep properly. how is the new medication as I have only been offered hydrea or the injections! and thanks again for the reply

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  • Posted

    HI, they say we can have a normal life expectancy as long as the condition is being correctly monitored/controlled, we are at an increased risk of stroke etc but again if our counts are within normal levels and taking asprin then that helps, ive also been told to eat healthy and exercise, if ur a smoker then try stop or at least cut down, ive spent each yr ive had ET just gettin on with it and not really given it much thought but 2 wks ago i started gettin palpitations and so bein sent to c cardiologist to check my hearts ok bcoz it cud.b the meds thats causin it, ive been on anagrelide near 2 yrs now after abit of a fight woth my heomotologist bcoz anagrelide is much more expensive than hydrea so he was reluctant to prescribe it, if im honest i had less side effects with hydrea but id been on hydrea quite a few yrs and.felt i wanted a break given the slight increased risk of leukemia with long term use, although the downside with anagrelide is it can cause probs with heart palpatations/irregular beat etc!, unfortunately we dont have many gd choices of meds for our condition, im in the process of changin heomotologist, want to go back to the lady who looked after me while i was pregnant, when i go blood clinic at the min i c whoeva is free to c me and im in and out in.no time, neva given.anytime to sit and talk about anythin on ur mind etc, r u finding hydrea is keepin ur count stable?, any side effects?,
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  • Posted

    Hi Claire,

    I will be asking my Dr about a possible change of medication. Do you have memory lapses, mine are so bad, long term old memories seem okay but working memory is useless. I still occasionally get the tingling hands/arms with visual disturbances, I feel so tired all the time but dont sleep.

    I do not smoke or drink, I walk each day and cycle 20 miles a day. Thanks for chatting

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  • Posted

    hiya, no i dont suffer with memory thankfully, but the tingly hands and feet or legs ive had a few times, ive also had vision probs the odd time, was writing xmas cards and.my left side of my face started tingling and then for a second or so i cuddnt c what id just wrote!, like i say it werent for long but it was scary!, ive been opticians to rule out eye probs and had a brain scan in march and thankfully alls ok, but y it happened or y the tingling ive no idea, reading diff forums it seems its common in ET, is there any other forums uve found that are ok?, i always seem to come across american sites or sites with posts on from yrs ago!, untill now ive never chatted to any1 with ET, not bein nosey but did u have the marrow test and jak 2 test?, imhavin probs with my count at mo, havin.bloods done twice a wk, its droppin.and they dont know y, im.down to 130 from.mid 300,in the space of 2 and hlf wks and.my tabs have gone from 4 a day to 1!, back there 2mo for another test and.chest xray, fingers crossed alls ok :-) , is ur count in normal range when ur gettin ur symptoms?, claire
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  • Posted

    hi claire,

    its been great chatting too. i too am grateful to have found more recent postings and to exchange experiences. i am seeing my GP this friday to try for new medication and to see if she can help with the lack of energy etc. i havent had a bone marrow test, i had ecg and have enlarged left side of my heart, i get breathless easily climbing stairs and had fast heartbeat palpatations the other day. would you like to be in touch directly? will try leaving my email in the next posting. it starts with my name but with an i and no m !

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  • Posted

    obviously living on the isle of man , we are referred to as MANX, i had an aunty called , dot net !
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  • Posted

    hi claire,

    i just had the jak2 test, they havent mentioned anything else. i also was checked over by an optician and was perfect. i also had very high blood pressure but the meds for this seem to be working. im not sure but i think the hydrea is causing sleeplessness and lethargy x

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  • Posted

    Hi PaddyM,

    I deleted the post with the rest of your email as it was appearing as a link. If you want to share your email address the private messaging is now live so you can use this facility to contact users outside of the discussions.

    Regards,

    Alan (aka Emis Moderator)

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  • Posted

    Hi. My dad's been diagnosed with ET (a few days back) and the consultant has prescribed Anagrelide 0.5mg twice daily. After reading the experience of a couple of patients (and the side effects mentioned on web), my Dad is thinking about not taking the med. He is currently using aspirin (once daily). I am not sure what to do.

    Really looking to suggestions / feedback. Regards

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  • Posted

    Just been diagnosed with essential thrombocythemia a few days ago.  Really scared about what this means.  Got a platelet count of 700-800.  While looking back at the last 6years of blood tests I have had it for that long and docs not done anything about it.  Going for a bone marrow biopsy on Tuesday and the being started on low dose chemo tablets.  
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    • Posted

      Hi. I've just been diagnosed too and am starting glow chemo this week. How are you getting on my? Are you having any side effects?
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