ok im 24 years old but i was going to the er alot about the center left of my upper adominal and also i havnt had good bowel movment i was feeling like pressure feeling or like something was stuck all the doctors told me it was indigestion and my ct scan came back negative until i went to my PM and he said in my labs i had thick blood which his notes were when i went back to him for another blood work which stated "labs continue to show thick blood or polycythemia. We need to understand why you have this other test were normal coristol 16, tsh 1 vit b12 529, retic count 1.3 and he told me to follow up on polycythemia and idea because my symptoms i been having was sinus infection at one point then i had a bad cough and been fatigued sleep deprived my head feels like its underwater sometimes i need answers please im in head thinking about blood cancer because im young and im not ready to leave this world behind
Hi @tyran357 thanks so much for posting, it takes courage.
You certainly seem to have lots of symptoms that could be so many conditions.
So what is the current situation?
Do you have any support?
if you do not mind me asking do you live in the UK?
Perhaps write down all your symptoms, fears, questions and practicalities for your next appointment.
I find if I am not getting enough sleep my mind and thoughts are all over the place.
Perhaps remember how many posters there are on our forum and we are still going. I was diagnosed 20 yrs ago.
We obviously cannot give you a diagnosis as we are not medically trained and do not have your whole medical history.
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do keep posting
Hello there @tyran357, welcome to the forum, although I bet you never thought you’d use one like this. I’m really sorry to read of those symptoms you’ve been experiencing and concerns about what they might be.
It’s really great that you took yourself to A&E and asked your doctor to check your symptoms thoroughly, despite being told they were indigestion. Advocating for yourself and what you know to be wrong in your body will stand you in good stead as further testing occurs.
I’d say at this early stage try not to search online about any of these terms coming up in test results until you’ve been given a diagnosis. Sometimes it’s easier to find an illness to match our symptoms as testing can take so long!
Perhaps you could ask your doctors for more clarity about the “polycythaemia” you saw written down as there’s a non-cancerous type called secondary polycythaemia and then Polycythaemia vera (PV) that I was diagnosed with last year which is a rare blood cancer. For now try not to think the worst and see where the testing goes.
Do you have loved ones you can share your concerns with? Perhaps someone who can attend appointments with you to help keep note of what medical information is being shared? I find it hard to take in everything my doctors tell me so I take notes. During appointments that seem like more of a big deal I take along my partner who tries to write stuff down so I can focus better on the doctor.
Another thing that helps me in between appointments is keeping active and getting fresh air. It can be amazing for distracting from anxiety, and is good for us generally.
Or maybe something creative might help for now? Even writing about it all can help I find.
Once you have a better idea of what might be causing those symptoms then you can begin to look into what it is, how to live with it. But for now I’d say try to find some calm in this in between place you find yourself while you’ve been given some information but maybe not enough to work with proactively.
And may I add, if it does turn out to be Polycythaemia vera (PV) then there are lots of folks right here ready to support you and give tips as to how we live with it and other Myeloproliferative neoplasms (MPN).
You may like to give the lovely specialist nurses here at Blood Cancer UK a call on 0808 2080 888 who can better answer your test result queries.
Thinking of you @tyran357, please let us know how you get on.
Oh I see you’ve used American spellings, are you in the US too? Perhaps you might also find LLS helpful. They have all sorts of support, financial stuff, and a sort of buddy system, if I recall correctly. Anyway, keep us posted!
tyran357 The unknown is always a worry. I would suggest getting a follow up so that you have answers. For me anyway I prefer to know what I am or am not dealing with. Wishing you all the best. Liz59