You definitely need to see a MPN specialist. There are other medications you could try and as a last resort, you could also have a stem cell transplant. But these are options you need to speak with to a specialist.

Does sound like a lot of confusion. ET is high platelets. MF is enlarged spleen. I had ET about 15 years before being then diagnosed with MF in 2014. On 20 mg Jakafi and infusion of Vidaza from a clinical trial at mdanderson. My platelets now range from 24 to 50. Usually on the low side of 50. I think you should change drs

My (now former) haematologist said to me: “Nothing concerns me about your bloods”. I guess “he can live with i”t! Grrrrr. Finding someone who will help with the things that don’t show up in an FBC is very hard. In the meantime, We have to be our own advocates to push for the right tests, the right treatments and the right specialists.

Once upon a time we looked at doctors as being all knowing and powerful. But having worked in the health field for many years, I now know that they are just as prone to mistakes as the rest of us. You have to be the one in charge of your path, Deepak. If you feel that your specialist is not doing things the way you would like them, then talk to them or change. You know more about you than anyone will ever know. Don’t let a doctor’s attitude prevent you getting the best care possible.

Have you seen this video https://youtu.be/Eicat9xytKs?si=x6h33oKGawxE89E5 ? Brandi Reeves advocates for normalising blood work and gives a great explanation why. I would show you specialist this and then discuss a path forward. Good luck. By the way, this is exactly what I am doing with mine. I see them next week to tell them how I want my treatment to go.

He can live with it? I had a doctor with that attitude (actually said a million), I fired her and found me a MPN specialist. Every symptom you can think of, I had. I’m more than a lab value