I am a 26 year old woman who recently went to the GP after developing a facial twitch. My GP referred me to neurology and decided to check all my bloods. From this my platelets came back higher at 460 so she requested a repeat which then came back at 490. I knew this was classed as high but I have known people to be much higher, however from this she has requested blood film and JAK 2 testing. I looked up the symptoms of cancers associated with this and realised that I have quite a few and put them down to other things. I just wanted to query whether anyone else was diagnosed with Essential thrombocythemia (ET) roughly around the same platelet levels, or does it need to be much higher?
Hi @Lauren_x a great big welcome to our forum.
This really is a question for the person you saw and ordered these tests.
So many things are taken into account when medical people make a diagnosis and it is not always about numbers, as you say any other symptoms you might have can be put down to other things, we are such complex beings.
I always write all my questions (and fears) down, medical history, symptoms, medications etc. and it seems that you have gained medical information along the way so you might have a few questions.
I have found searching ‘Dr Google’ was not my friend sometimes as it stated a 5 - 10 year life expectancy for me and here I am 20 yrs later.
Do you have any support?
Waiting and not knowing is a horrible time so take lots of special care of yourself and please do let us know how you get on.
My GP hasn’t actually told me herself what it is she’s looking for however I have a masters in cardiology and knew from haematology modules about the JAK2 gene and other blood cancer testing, I have actually done a full case study on polycythaemia Vera. Sometimes being ignorant is definitely better and doesn’t make you overthink. It’s definitely the fear of the unknown that is getting to me more than the potential diagnosis.
I really appreciate your advice and think I will phone my GP, so hard to get in contact with them though, and just get some clarification on what she’s thinking about.
Hi @Lauren_x it sounds as if you have a plan.
Gosh what a background you have and I can really see your thought process now.
I believe often diagnosis is about ruling things out as much as ruling them in.
Often symptoms are so generic it is very difficult.
It is OK to tell your GP your thought process too.
Ever since my diagnosis my thoughts and feelings have been all over the place.
My blood cancer was diagnosed by a gynaecologist!!!
Please do let us know how you get on and be ever so kind to yourself and keep posting…
I hope you are doing well. I stumbled across this forum and have a similar story as yours. I am 31 years, female, and my platelets count has been slightly elevated ~450-550 since last year. My doctor has done numerous tests, and everything has come back normal. I will do one final test in a month, JAK2.
Was just looking for anyone else with a similar story as mine to find out what the prognosis/diagnosis ended up being.
Hi @Clue17 a great big welcome to our forum and I am so glad that you stumbled across us.
I can obviously understand that you would like to find others with a similar story and I hope others will share their stories.
Please do not forget that we are all very unique individuals with differing medical histories who can react differently to to medications and medical teams take a lot of different aspects into account.
However what I do find is that many of us share similar fears, thoughts, emotions and practicalities.
Really look after yourself and please do keep posting