Hi
I was diagnosed with Essential thrombocythemia (ET) in 2019. Been on a watch and wait protocol. Visit to consultant every 3 months. Seem to be moving more into the PCV space as both platelets and RBC are high now and I get regular venesections to reduce my haematocrit. My question is about vision problems. It’s become more of an issue recently and I’ve started to experience double vision. Is this something else that has happened to others? Would starting a drug treatment regime help resolve these issues?
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Hi @TheGoldenWalrus I am so glad that you have found us.
Personally if I were experiencing any vision problems I think I would immediately contact my specialist nurse, then medical team, then GP and then if not resolved my opticians.
I think it is really difficult with some symptoms, like eyes, to know what to attribute symptoms to.
But I also feel it would be important to resolve.
I have been told to keep my dental/hygienist and optician appointments up to date.
I also take responsibility for telling/reminding all specialisms of my whole medical history.
Please do let us know how you get on and if my symptoms get worse it would be 111 or A&E.
Be very kind to yourself and take care.
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Hello there @TheGoldenWalrus, welcome to the forum, fellow Myeloproliferative neoplasms (MPN) survivor. I’m glad you found us here.
Really pleased to read that you’ve needed only phlebotomy since diagnosis—I sometimes think I’d prefer just that as treatment for the Polycythaemia vera (PV) I’m diagnosed with. Alas, I had a heart attack caused by a blood clot years ago which classes me at high risk now, so I take a cytoreductive medicine (hydroxyurea), blood-thinner (aspirin), and have occasional phlebotomy.
Have to say, I do sometimes get slightly blurry vision in the evenings after I’ve taken my medicines. I had my eyes tested again recently and my prescription hasn’t changed since my last one, which gives me confidence that my eyesight isn’t worsening due to the Polycythaemia vera (PV).
Like @Erica says, do let your specialists know. Double vision could be caused by all sorts, but is a known side effect of both Essential thrombocythemia (ET) and Polycythaemia vera (PV) as the great Blood Cancer UK research for both states: Essential thrombocythaemia | Blood Cancer UK
Polycythaemia vera (PV) | Blood Cancer UK
Do please let us know what your specialists say, and whether your diagnosis of Essential thrombocythemia (ET) has transformed into Polycythaemia vera (PV)—I imagine further testing would need to be done to confirm this, perhaps a bone marrow biopsy.
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Hi @TheGoldenWalrus,
Welcome to our forum. I am really glad that you have found us. It is a safe and supportive space.
@Erica and @Duncan have already given you some great information and advice. I just wanted to reinforce what they had said in regards to your double vision. Visual changes are a common symptom of Essential thrombocythemia (ET) and one of the most important things to know about Essential thrombocythemia (ET) is that it can cause thrombosis, or blood clots. It is therefore really important that you let your team know about your double vision if you have not done so already especially as your platelet count and RBC are now high.
If not, I would advise that you contact 111 or attend A & E especially if your symptoms worsen.
Please let us know how you get on.
Take care
Fiona (support services nurse)
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