Hello everybody, i am 54 and was diagnosed with Essential thrombocythemia ('ET') two and a half years ago, although the consultant said it had been showing up in blood tests from 2008. My latest blood test a few weeks ago shows my platelet level at 1128. I still only take low dose aspirin each day and am considered low risk. My last consultation was a telephone call with the nurse specialist last week. I discussed numerous bruises i had been getting on my legs and arm, which is a recent development. I also had a sudden change in my hearing in my right ear one evening with it being muffled as though i was under water. It was checked by a doctor but no problem with the ear was discovered. It had gone by the next day. The nurse said Essential thrombocythemia ('ET') can cause problems with hearing but didn’t seem concerned by it or with the bruises. Since my appointment i have now started getting continual bursts of tingling on all areas of my body which come and go within a few seconds. The nurse said we don’t really want to start you on any ‘chemo’ before you’re 60. I haven’t been worried about my condition until now but am getting concerned with the platelet level and new symptoms. It feels like i am waiting for something serious to happen and i feel we should be trying to lower the level. Has anyone had this platelet level and no intervention to lower it?
Hello @JDT and welcome to this forum. I hope you will find it a supportive and helpful place.
My story is that I was diagnosed with an Myeloproliferative neoplasms ('MPN') that had features of Essential thrombocythemia ('ET') and myelofibrosis many years ago at the age of 35. My platelet count at diagnosis was over 1000 and despite being under 60 it was decided that the platelet level needed to be reduced. I appreciate that this was a long time ago and treatment options will have changed. It might be because I was experiencing symptoms like migraine headaches and tingling sensations similar to what you describe. Also, I was getting infections that were prolonged.
I don’t want to worry you and I don’t have medical knowledge as such. I am just a fellow patient. I hope the fact that I have lived with this condition for over thirty years brings you some reassurance. Interestingly my bone marrow has now become under active and my platelet count is now below the normal range. I didn’t realise that hearing problems can occur with Essential thrombocythemia ('ET').
I don’t want to bombard you with too much information but I am thinking of you and send my best wishes, Willow x
Thank you Willow for your reply. It’s appreciated. It’s good to hear you’ve managed your condition for such a long time. I hope I can do the same. Best wishes to you.
Hello there @JDT, welcome back to the forum. Sounds like we were both diagnosed with Myeloproliferative neoplasms ('MPN') around the same time, and I’m glad that your Essential thrombocythemia ('ET') is considered low risk.
Like you, my old blood test results likely showed I had a blood disorder a while back, and in fact I survived a heart attack caused by a clot many years ago. To be fair, Myeloproliferative neoplasms ('MPN') like Essential thrombocythemia ('ET') and the Polycythaemia vera ('PV') that I live with are so rare that I’ve heard around the forum that GPs don’t often have much experience of patients with types of blood cancer like these. My own family doctor had never heard of Polycythaemia vera ('PV'), but thankfully she’s read up on it now because of me!
Like dear @Willow says, reducing high platelets is a main aim of treatment for Myeloproliferative neoplasms ('MPN'). Those symptoms you’re experiencing, the numerous bruises, hearing changes and tingling, are things my haematologist would want to know about directly as they can be caused by our Myeloproliferative neoplasms ('MPN').
If your blood tests are not done via your haematologist (as in via your GP instead) then it might be that you need to draw your Essential thrombocythemia ('ET') specialist’s attention to the results, especially ones you’re concerned about. You can ask your specialists to explain what to look out for in your test results and when to act on that, what might your risks be, anything to look out for. Keep asking until you feel comfortable in what to expect.
Not to worry you but if I was experiencing those symptoms then I would pass them by my haematologist just to be sure and so they have a record of them. You should have the details of a clinical nurse specialist or your haematologist so I’d suggest asking them about your platelets and symptoms.
If you feel you’d like more immediate information you can call NHS 111 to speak to experts about your symptoms. Please don’t grin and bear anything you wouldn’t want a loved one to tolerate.
You can also call the specialist Blood Cancer UK nurses who are experts of all this and can answer medical queries. They’ll be back Monday and their free number is 0808 2080 888.
Do please let us know how you get on @JDT.