Diagnosis

[Speersy1]

Hi all, new to the forum looking some advice. MY high platelets were picked up 20 years ago at age 20 at a level of 900. So for 10 plus years I was monitored every 3 months, No medication apart from when pregnant given baby aspirin.

I am Jak 2 negative, however after feeling fatigued in Jan this year I went for a blood count to find out my platelets were elevated, I was referred to hospital again but then they said leave it 3 months and have it checked again. I left it 8 months and I was rechecked last week and they are only slightly elevated at 550 so have been referred again.

What I really want to know is how do I get a diagnosis after 20 years I have never had it confirmed, that I have ET

Secondly, I work as cabincrew, should I take baby aspirin due to clotting risk?

And lastly I have extreme fatigue a couple of times s year is there anything that can help with this?

Sorry for the long winded post any help is appreciated.

[Mazcd Partner MPNVoice]

Hi, I think the best thing you can do is speak to your GP about this and ask exactly what the haematologist has told him/her about your raised platelets, and if you can be told if you do or don't have ET. Your GP is also the best person to ask about your clotting risk and whether or not you should take aspirin. Fatigue can be helped by exercise, just something gentle like a walk, or dancing around the the kitchen, as long as you keep moving. If your haematologist isn't sure about giving you a diagnosis perhaps you could ask to see someone else. Kind regards, Maz

[Speersy1 in reply to Mazcd]

Hi Maz, I have asked before and in all honestly the doctor told me he has little knowledge of the condition, hopefully when I see the haematology dept they will be able to inform me.

Thanks

[SunnyY]

Hi Speersy1

I'm relatively new with my diagnosis and after great advice from this ground and my haematologist, drinking water/staying hydrated has been a huge help. It can get very busy at work and I have days where I forget to keep on top of the water intake, these are the days I find I get huge energy slumps.

Hope you get things sorted

Sunny

[Searcher56]

Hello Speersy,

Your fatigue could be caused by your job! Also I heard about a case of ET in America who is a frequent flyer that passing through the security scan often could be the cause of her ET. There are multiple things in modern life that can cause fatigue. I am now eating according to my blood type which may help to improve my health, early days yet.

Searcher56

[rubyrubyruby]

Hi. You need to ask for a referral to a haematologist who specialises in mpn's. Most GP's haven't a clue how to deal with our blood disorder. I would absolutely say you should be on aspirin, but I'm not a doctor. You must get some more medical advice.

[Speersy1]

Thanks everyone, I am waiting on an appointment from the hospital. Are there any questions I should definitely be asking in the consultation?

[katiewalsh]

Hi

This isn't a question to ask but I recommend you bring someone with you who is good at listening and remembering what your doctor says. I'll leave to others to suggest questions. Good Luck!

Katie

[katiewalsh]

P.S. If you don't get many answers, start a new post with your question. Katie