When is it time?- When you have symptoms. There's nothing magical about a million platelets. If your symptoms are bothering you, it's time

I had these problems. ET 2 yrs. Platelets 500-700k. headaches, sweaty at night, entire bed. Feet tingling. Confusion. Extreme exhaustion. Barely could work. Arms and legs heavy. Brain not working- had to tell myself to get up several times to get up out of a chair. Sometimes hard getting out bath tub, I would just go to sleep in tub and try to get up later. Was going to a regular hematologist/oncologist for one and half years. Then flew to Cornell in NY. Symptoms gone after 1 visit. Transfer back to my area and switched to an MPN specialists. Regular physicians look online and go with just the recommendations and don't think outside the box. MPN specialist deal with blood cancer and MPN. he started me on Jakafi which typically is ordered for PV and MF, but thinking outside the box- decrease cytokines that deal with inflammation. Let's see if it helps symptoms. It did.

Waiting for the onset of symptoms is a mistake; early appropriate intervention is the key. The research done at Weill Cornell on the importance of Interferon is very hopeful.

Laura, I second what Patrice wrote. My wife has jak2 and had high platelets. Similar symptoms. Hydroxyurea not great. Jakafi corrected symptoms in one week. She's on jakafi and aspirin. You really need to see a mpn specialist. The specialist will be more proactive. Let us know. Best wishes.

Laura, you definitely should see a haematologist who specialises in MPNs . This is the most important thing you need to insist on. I had a spell when I left Australia where I had lived for 4 fab years and was referred to the DIRECTOR of Haematology at my local hospital which I thought was great - I mean the DIRECTOR - she must be excellent?? However, her specialism was Lymphoma- and because she really didn’t understand my condition of ET- she put me on Anegralide because that’s what she was guided to from a book! - a
After 1 week on this drug I felt lousy- chest pains , breathing difficulties and palpitations- when I told her this - she didn’t listen as she was unsure of what else to prescribe! I ended up 4 months later with a heart attack - caused by this drug!
She visited me in Coronary Care and apologised to me! I told her that I needed a specialist in MPNs and this is what you must do- even if you have to travel to see one! With all that you have going on you should be on Hydroxy Eurea-( Carbamide) and an asprin- !
Please fight for your right- you are too young to be feeling like you are. I was on HE or HC for 23 years with no side effects and felt marvellous - now I know some people are intolerant of this drug as I was to Anegralide but that is the minority - take care and let me know how you get on please. I will keep you in my prayers.