Ive recently been re-referred to heamatology, a year and half ago i was referred for persistently mildly raised platelets after a routine check up my gp noticed over the last few years there was some raised platelets. The heamatology dept. Put it down to inflammation as my platelets went down to 422 and he said it would only be concerning if they persistently went up, a year and half later another gp looked at my test and revisited the other tests and over a couple of months checked for raised platelets it would usually be around the 420-450 mark we waited six months and recently its raised to 470-504 and have been referred to heamatology. I had the test done today two vials are being sent for genetic testing, and another 2 vials for other blood checks he said things like kindeys? I have a consultation for a months time. I’ve had high white blood cells persistently too. I guess im just worried for the worst. Does Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) have platelet counts go up and down before diagnosis? And also do they always routinely check for genetic mutation as i wasnt sure if they checked a year and a half ago? Just worried if its the worst as im 37 ive not had babies yet does it mean you cant? Does it mean it will limit length of life? Any advice would be great
Nasha just wanted to say hello and sorry to hear that you are worried and stressed. Lots of blood tests including genetic mutations in my experience are carried out when checking for mpns. I have Polycythaemia vera (PV). There is lots of information on this site about mpns also you could ring and speak to a nurse who could answer your questions. Warm wishes. Liz59
Hi @Nasha Oh, I think for me it is the not knowing that makes me anxious.
You have now had lots of tests done and an appointment to discuss the results.
This time will give you the opportunity to write down your fears, questions and practicalities.
If you have copies of previous test results it might be worth taking them.
It might also be worth taking a list of medication and medical history for yourself and close family members.
I believe in being pleasantly assertive and ensure you get answers to your questions.
Perhaps make it as concise as you can as appointments are time limited.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Perhaps it is going to be a worrying time for you so try and divert your mind, there is always a problem when we present with generic symptoms.
Be ever so kind to yourself and please do let us know how you get on.
Dear @Nasha,
Thank you for reaching out. It sounds like your GP has been really thorough which is great and you have had all the right tests done. Genetic tests are always taken when investigating an Myeloproliferative neoplasms (MPN) and I have attached some information on this here - Blood cancer tests | Blood Cancer UK. This page gives information on blood tests and also genetics if you scroll further down. The genetic testing will give the consultant a better picture of what is going on. They may not have done this last time if they thought this was inflammatory cause.
You have lots of really big and valid questions here, but I would encourage you to take one step at a time, I know it is not easy. When you see the consultant they should be able to tell you based on all these results if there is anything going on, for example an Myeloproliferative neoplasms (MPN) like you have mentioned and from there they will be able to answer your questions.
As you may have already read Myeloproliferative neoplasms (MPN)’s are a group of conditions which basically mean the person is making too many of a certain type of blood cell. Each Myeloproliferative neoplasms (MPN) is defined by which cell is affected. I have put here a link to Myeloproliferative neoplasms (MPN)’s from our website where you can read more about it - What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Please do take one step at a time, you may not need any of this information. Please do keep us updated and if you want to talk about things in a bit more detail our number is 0808 2080 888, our phoneline is open.
Best Wishes,
Heidi J (Support Services Nurse)