Essential Thrombocythemia JAK2 symptoms of dizziness/vision distortion

Hi Sarah,
I was doagnosed with Et in November 2022. Taking 1000 mg Hydroxuria
per day. My dizziness/fainting started December 2025. Had 5 Episodes so far.
Was admitted to the Hospital twice. I do have a low heart rate. I am seeing
a Cardiologist. They ruled out any ET connection. Had several tests, Brain Scan, Echocardiogram etc. Just wore a Heart Monitor for 30 days. Waiting
for results. Next test on May 1st will be a Stress Test. So far still no answers after several months. My Hem/Onc agrees with my Cardiologist. I am not
sure what to believe anymore. Taking day by day. I will keep you updated.
Take care of yourself.

Dad had ET with visual distortions with ET, which he described as blurred vision and loss of peripheral vision at left or right for a day or two. This would come and go, and seemed to improve with HU. But we all respond diff to the meds.

What you describe is familiar to me as a heart patient also with ET CALR). I have a bad mitral valve, so am looking at cardiac surgery. Relating that saga on this thread in case it is pertinent to anyone else.
https://connect.mayoclinic.org/discussion/et-calr-looking-at-heart-surgery/
Glad you got both cardio and onco to weigh in on this! Keep us posted!

Issues with our eyes are scary for sure.

To offer a quick (not necessarily final) answer from Google AI:

Yes, Essential Thrombocythemia (ET) can cause vision issues, largely due to high platelet counts causing blood clots or reduced blood circulation to the eyes and brain. Symptoms often include temporary blurred vision, blind spots, shimmering, or light flashes . . .

As for dizziness, this is another "gift" of ET, again caused by our platelet-heavy blood impeding circulation.

While I haven't had the scary vision problems, I have had ET dizziness. For me, as HU brought my platelet count down, I no longer had the head-spinning episodes.

Hoping HU also brings you relief, sarahgault.

I suffered from blurry vision, dizziness and other vision effects before diagnosis. Asprin helped with the dizziness, but blurred vision remained. It was intermittent, but more between somewhat blurry and very bad than between clear and blurry. After 6 months, my vision was better, but still blurry. I saw a rheumatologist, and was diagnosed with Sjögren’s syndrome. I also had other symptoms. I then went to an eye doctor for the dry eye. I had some treatments and now use an eye drop that helps quite a bit. Vision can still be blurry, but mostly is clear. I also do not suffer from poor vision in low light conditions. If you are not satisfied with your vision after your platelets have come down, try a dry eye specialist.

Hi Sarah, Welcome to Connect. You’ve gotten some great feedback from fellow members who also have ET. I just had another thought though regarding your dizziness and sight issues. If you’re concerned about the possibility of those episodes being a TIA, have you brought that concern to your primary doctor or hematologist oncologist? Have you had any follow-ups to see these symptoms are possibly TIA related?

@loribmt hello, thank you for your response! I have not talked to my doctor nor had a follow up appt yet. I didn’t have any tingling or numbness, confusion, or trouble speaking so kinda thought it probably aligned more with the ET symptoms. But I definitely pay close attention when it happens, I’ve had 4 episodes of that in the past couple months of the dizziness with vision distortion. I will bring it up with my doc and am tracking the occurrences. Thank you! 😊

@nohrt4me I’ve been on Hu 500 for a year. I’ve had some vision problems such has blurred & dry eyes. I just developed a chalazion on my right eyelid. My ophthalmologist had me take antibiotics and warm compresses to my eyelid. Now he wants to put a small amount of steroid shot in my eye. Has anyone ever had this experience? I’m very concerned that maybe my medication is causing this. Or my blood cancer, which is ET would love to hear from someone who has had this problem.

I was using steroid drops for awhile. They improved clarity of my vision. Now I am on restatsis drops. I am unfamiliar with shots to the eye. I have never heard of HU causing this effect. Dry eye seems pretty common for art patients. I also have dry mouth and other membranes. I am taking pilocarpine and it helps with that symptom but does not do much for the eyes.

@sarahgault I just think it’s a good idea to talk with your doctor about this. Anytime we have distortion in our vision and unexplained dizziness it’s important to have those symptoms checked out.
It may or may not be related to the ET and the medication. For peace of mind it’s just better to have noted this with your physician. I like your idea of keeping track of the occurrences. Can you recall anything that happened right before these spells? Lack of hydration? Overly tired?