I have just had my first appointment with the haematologist after being referred by my GP as my platelet count is 776, and has been over 600 for 2 years. My GP suspects essential thrombocythaemia, and high risk as I am a 67 year old woman and have had two TIAs in the last 2 years. Bloods have been sent to Leeds, but will take 4-6 weeks for the results to come back. He didn’t actually tell me what he was testing for, but I took a photo of the request form while I was waiting to go into the nurse, and did a google search when I got home, so I know it’s for JAK2 and Myeloproliferative neoplasms (MPN) screening, and appears to be to eliminate any other reasons for the high platelet count. The only thing he asked me was whether I have had any blood clots and I told him about the TIAs. He didn’t ask anything about my general health or family history, etc, and I wasn’t really given the opportunity to ask any questions, or any real explanation of what happens next, apart from they will be in touch when the results are back. I now can’t stop thinking that it all seemed a bit dismissive. Is this normal?
Hi @Irene_Louise If you are anything like me I think that the wait for your test results of 4-6 weeks will seem a very long time for you, I find waiting and not knowing very difficult.
Don’t forget all tests are to rule conditions in or out.
I have learnt to be pleasantly assertive and make sure that I do not leave the consultants room before my fears, questions and practicalities.
I have found that all appointments are different, and I have had a few, as I was diagnosed with another blood cancer 20 yrs ago and I am now 74 yrs old.
Please do let us know how you get on and be kind and look after yourself
Thank you for the support, Erica.
I suppose I will have to learn to be not only patient, but also, as you put it, to be pleasantly assertive! I waited 8 weeks from referral to my first appointment, and that seemed like a lifetime!
One thing that upset me a bit was that my GP had not even picked up on the high platelets! I had a routine blood test and noticed it myself on the NHS app. I phoned the surgery to ask if my Clopidogrel needed to be increased, and it was a locum GP that phoned me back and suggested Essential thrombocythemia (ET) and a haematology referral. I can’t help thinking that if I hadn’t made that phone call I would still be none the wiser.
Hi @Irene_Louise good for you making that phone call.
Be very kind to yourself
Dear @Irene_Louise,
Firstly well done for recognising that something wasn’t right and pushing this with the GP, you shouldn’t have had to do that but advocating for ourselves is so important!
I am sorry your appointment wasn’t thorough enough and you didn’t get a chance to ask the questions you wanted, your frustration is completely justified.
I wanted to come here and say that you would be very welcome to call us and we can go through your questions and try our best to answer them for you, if you would like to do this our number is 0808 208 0888, we would be really happy to help.
Have you got a follow up appointment in the diary?
Best Wishes,
Heidi J (Support Services Nurse)
Hello @Irene_Louise - welcome to the forum sorry you have had a bit of a time lately with doc appointments and tests - it’s never easy when these come along then waiting for results and not always the best input in the interim - glad the locum GP picked up potential of Essential thrombocythemia (ET) and testing for it - an odd one of higher platelets don’t usually cause concern but if there’s a pattern of high platelets or they continue to go up that’s when the checks should be made and it’s good yours are now being checked - the Jak2 etc results do take quite a few weeks to come through - I do have Essential thrombocythemia (ET) diagnosed 18 years ago it’s very treatable and made of us have dealt with it over many years so ask away any concerns you have- I think the GP is looking at the most logical route by the tests being done so although it’s felt dismissive not asking your general health or family history actually the tests are the best help for you - Essential thrombocythemia (ET) is not genetically linked bar some very rare cases so family links aren’t needed and the symptoms we do have are ones that can be for many conditions for the bloods being done for you at the best port of call for now so hope that’s reassuring -let us know how you get on
Hi @Irene_Louise
I can see you have been given some great advice already.
It’s so hard when you don’t have the time you need to ask questions and that explanations are limited. It’s often the case that you come out of initial appointments with more questions than answers which shouldn’t be the case.
Definitely give the helpline a call of you need to talk things through. They are so helpful.
Please keep us updated on how you are doing. Waiting is horrible and we are all here to support you x
Thanks, Heidi
I haven’t got a follow up appointment yet, the nurse said they will send me a text for one when the blood results are back. I’ll keep a note of the number for the support line, but for the moment I’m feeling a lot better just with the replies I’ve got so far from the really helpful and supportive people on this forum.
Irene 
Thank you so much, Jilly
Your response has really made me feel a lot better about it all. You have been very reassuring.
Irene