Hello all …
I posted a few days ago asking for any advice re breathlessness …one response was to ask GP … I’ve yet to meet a gp that even knows what an Myeloproliferative neoplasms (MPN) is … so let me rephrase , is there anyone in this site who experiences breathlessness & is it associated with Essential thrombocythemia (ET) ? So grateful for any experiences or views from people who actually have the condition rather than being signposted to others who have no clue … thanking you 
shishabell x
Hello @shishabell. I am glad you have found this forum and I hope that you find it a supportive place where you can share how life is for you. I was diagnosed with an Myeloproliferative neoplasms (MPN) many years ago when I was in my thirties. At that time I was told that it was hard to classify as it had features of Essential thrombocythemia (ET) and myelofibrosis. As the years have gone by it has transformed to myelofibrosis and no longer has any features of Essential thrombocythemia (ET). I do find that when my haemoglobin (Hb) level drops that I experience breathlessness. I don’t know if low Hb is something you have experienced but it might be worth checking what the level is when you next have a blood test or possibly asking for a sooner blood test if things become worse. Thinking of you. Warm wishes Willow x
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Dear @shishabell
So sorry to hear that you are breathless. May I ask whether your breathlessness has been investigated by your Haematology team?
As @Willow mentioned, when taking Hydroxycarbamide, some patients can become anaemic which can lead to shortness of breath so I wondered if this is something you have experienced?
I would also mention that having a diagnosis that requires continued treatment which is of a immunosuppressive nature can lead to less energy levels purely by the fact that your body is working harder.
I would recommend mentioning to your Haematology team so that they can review your blood counts and further suggest any interventions.
Very happy for you to call us if you would like to talk this through: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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