Connect
Misdx with VWD at 14, in my late 20’s now looks like ET/or MPN. help?
Have any of you been diagnosed with triple negative ET, ET early in life, or had it misdiagnosed for years before getting the accurate diagnosis?
I’ve had sustained elevation in platelets (over 450k) since I was 14, and subtle rising in adulthood to where they are now (670k-700k) and doctors like actually have not been very helpful in obtaining an accurate diagnosis, or preventing complications like blood clots before it becomes a problem. I’ve even had one tell me that my anxiety and stress that I’m adding can influence my platelet levels, but then when I tell them that I was diagnosed with VWD before high school they just look confused because that was a misdiagnosis. I had one great doctor over the years and he was testing me for ET right before he had to retire, and it pretty much checks out perfectly. Anyone have experience with TNET or anything similar to mine?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Hello, lexsjx. I am so sorry for your health issues, and even more sorry about the incompetence of your doctors.
Yes, TNET is a thing, and here you will meet other brave people living strong with it.
My dear, we ETrs are extremely rare. Doctors don't know what to do with us. Misdiagnosis is all too common.
But this forum is your Guide to Thriving with ET.
Use the search bar at the top of the page to find discussion threads about all aspects of ET, as well as TNET-specific topics.
ET isn't a walk in the park, but the important thing to remember is that it is manageable.
So far, you've had your blood analyzed, right? Has any treatment been suggested? Is making an appointment with a hematologist/oncologist possible?
When a doctor tells you your anxiety and stress are the problem, she or he is really saying "I'm an idiot who knows nothing about MPNs, and I'm too arrogant to learn anything new."
MOVE ON from such a doctor.
You are not alone. This is the place to ask all your questions.
-
Like -
Helpful -
Hug
5 ReactionsHello. I am triple negative ET. I did not get blood tests when I was very young, so I can only assume that if tested my counts looked normal. However, my platelets were in high normal or little above for quite a few years. I had some symptoms like night sweats, dry eye, GERD that had no explanation. Some of these are not even typical ET symptoms. My hematologist said that I had CHIP.
-
Like -
Helpful -
Hug
3 ReactionsA bone marrow biopsy is helpful because it will show the classic "elkhorn"-shaped platelets that indicate ET. That's essential for those who test negative for the three driver mutations.
Getting a firm diagnosis is essential to good treatment. For most people, a biopsy takes 15 minutes, and they can numb you up so you only feel a momentary sting.
As your platelets move into the 700s, it's important to discuss aspirin therapy and platelet reduction med like hydroxyurea with your doc. This will help reduce clot and stroke risks.
I don't know how old you are or how good your insurance looks like, but younger patients (under 40) often do well on an interferon drug like Besremi.
Keep us posted!
-
Like -
Helpful -
Hug
6 Reactions