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Surprised by Blood Test Result - diagnosed with ET Jak2

Cmd53
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Hi

In December 2019 I went to visit the GP as I thought I had become asthmatic, as  I was occasionally breathless.  I enquired if I could be tested for an inhaler.

The GP arranged for me to have an ECG, Chest X Ray and Blood tests..

At my result review appointment I was pleased to hear that X-ray and ECG were normal  I was surprised that there was a problem with my platelet levels 600.  other than occasional breathlessness I was asymptomatic .Another blood test was arranged for before  Christmas.. My Platelet level was still 600.

After a third high platelet level result I discusses my results with a family member who is a Cancer Research Scientist at an English University.  He advised that I asked for a referral for further investigation.  My chest CT scan was clear,and lung function test was normal, but the Respiratory Consultant Referred me to a Haematoloist.  It was after the Haematology appointment that I was diagnosed with ET Jak2.  

As a result of the Covid Pandemic I am currently just taking asprin as I am reluctant to start the Hydroxycarbamide  drug.

Could anyone please advise me at what platelet level they started taking Hydroxycarbamide.  My platelets are currently 622.

I am a a 67 year old fit active female.

i look forward to receiving any replies.

kind regards

CMD

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    Hello CMD 53.

    Over 20 years ago, I started getting short of breath and asthma was suspected.  When the drugs dispensed for that didn't work, I had blood tests  done and they found my platelet count was 750 or so.

    I started taking a drug to reduce my platelet count and now I still take hydroxycarbamide and have not experienced any ill effects from it, apart from reducing my platelets. I am also prescribed aspirin and some other drugs for other conditions.  I am 82 now and hubbie and I have been self-isolating because of our age, but the garden is much improved!!

    Interestingly, I was told that a lot of people may actually have high platelets, but they are not always discovered, so we are lucky - we have been diagnosed with ET and there is recognised medication to control it.

    Try and put any more posts onto the specific ET site - I just happened to find you main comment and was curious to see if it was a blood disorder you were commenting about!

    Stay well and safe.

    Maureen

  • Offline in reply to MaureenV

    Thank you so much for your reply. 

    I tried to post on the ET site, but ended up on this site.  Not sure how to repost.

    Your reply has been most encouraging..

    Stay Safe

    Kind regards

  • Offline in reply to Cmd53

    Hi Cmd53

    I tried to post you a message from the ET site, but unsuccessfully.  Can I suggest you go to the top of this conversation strip and click on Post to Forum.  Then either type ET or Essential Thrombothycaemia and the words will appear. Click either of them and it should produce the ET forum for you.

    Good luck

    Maureen

  • Offline in reply to MaureenV

    Hi Maureen

     

    Thanks for your advice.  Still struggling to post on the ET thread, but will have another go tomorrow. 
     

    kind regards

     

    Cathy 

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    Hi there, I am a 73 year old woman, and have been taking Hydroxycarbamide for ET for 16 years, along with aspirin, not sure what my count is, but the drug does conrol it, have a blood test every 3 months.

  • Offline in reply to Roma

    Hi

     

    Thank you for your supportive response. It encouraging to know that the drug can be taken for so long and you haven't mentioned any side effects. 
     

    Thanks for taking the time to reply

     

    Kind Regards

     

    cathy

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