Hi Everyone I’m Lisa and new here, I am currently seeing a hematologist for a high platelet count currently 574. I was being monitored every 6 months but due to lock down I have not been seen since March 19. My doctor has now recomended I go back as soon as possible which is worrying although the platlets have only increased by 38. My hematologist confirmed I was borderline myeloproliferative disorder and put me on 75mg asprin a day but having read everyone else’s comments here I am concerned it could be more than this with such a high count and I dont fully understand what condition I have, any help would be much appreciated. thanks
Hi @Lisa11 I am so glad that you have found our forum.
Covid really has made things so difficult for the last 18mths, hasn’t it.
I can not help you medically, but I do relate to your anxiety, that not knowing and waiting are the worst.
Perhaps make a list of questions, including asking exactly what condition you have, I have found medical people speak a foreign language, for your GP (or Haematologist) and include your fears, symptoms, family history etc.
If you would like to talk to someone at Blood Cancer UK the support line details are above.
Please let us know how you get on.
Look after yourself.
Hi @Lisa11 a warm welcome to you, really glad you’ve found us during what must be an uncertain time for you. Please do give us a call on our support line if there’s anything you want to talk through with us or need any support.
In case it’s useful, we have an information booklet on myeloproliferative neoplasms which you can find here Have you made an appointment with your doctor to go back and see them? It sounds like you understandably have a lot of questions around what this might mean for you so we would really encourage you to get in touch with your haematologist or another member of your healthcare team, to discuss you concerns and answer any questions you have. Don’t be afraid to tell them that you don’t fully understand what condition you have - you’re well within your rights to feel informed around your individual circumstances.
Can’t really add much to what Erica and Alice have said, but for the last 8 years, I would have been jubilant to have platelet numbers below 600! I have ET, diagnosed in 2013 when platelets were about 1500. Been treated with 1000mg (now dropped to 750mg) hydroxycarbamide plus 75mg aspirin and my platelets have hovered around the 600 mark all the time. Specialist reckons they could be pushed lower, but the collateral damage probably not worth it. So talk to your specialist (and importantly, listen to them) but try not to worry too much.