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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I have constant silent migraines and visual disturbances. Also Cluster Headaches. Optician says my eyes test fine but I constantly cant see. Only had them since Monoclonal gammopathy of unknown significance (MGUS).
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Hello there @Juliet3.
Those constant migraines must be horrible to tolerate, especially with them affecting your vision so much. I’m sorry you’re experiencing those. What has your haematologist said about treating them?
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Hi Duncan, yes I am struggling with my eyes. Haematologist hasn’t acknowledged them. Google made the association.
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Well that’s not very helpful of them! As your optician and haematologist don’t seem to have offered any suggestions, I’d say it’s time to check with your GP and maybe to avoid googling as that’ll bring up mostly generalised results.
Just to add, many years ago I went through a patch of having long-lasting visual migraines which essentially made it too difficult to read, let alone concentrate on anything. I had them checked at A&E as per the NHS helpline suggestion and was told they were probably stress-related. Could yours be due to stress? Being diagnosed and living with blood cancer can definitely be stressful.
Please don’t tolerate those migraines @Juliet3, seek support from a doctor who can tell you what’s causing them.
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Here’s the Blood Cancer UK information about Monoclonal gammopathy of unknown significance (MGUS) including symptoms and side effects should you fancy a read: MGUS (monoclonal gammopathy of undetermined significance) | Blood Cancer UK
If you’d like to speak to the specialist nurses at BCUK they can be called on 0808 2080 888 and will no doubt have great advice.
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Thank you Duncan. I have had most of the Migraine medications but none of them have worked. I have no stress in my life, just a bit of anxiety in the last few weeks. I need to make my GP aware of how bad the headaches are.
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Sounds like you’re figuring out what those migraines don’t respond to which is great, but yes make sure your GP knows about them.
Do please let us know how it goes, and don’t forget the BCUK nurses are there to support you on that number I shared.
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I’ve been diagnosed with pcv for coming to 5 years now so no longer class myself as newly diagnosed.
Throughout my ongoing journey I have noticed blurry vision and not being able to read small text from a distance (particularly annoying when your reading the football scores on soccer Saturday) I can’t say for sure but I used to have really poor eyesight and had laser surgery to correct it almost 10 years ago. Though my eyesight is fine during the day I do still wear my glasses when driving as the glare and headlights in general make driving very uncomfortable. I also have a heart condition so on the side of taking my meds for pcv I’m almost taking a mini chemist about of meds for that too. Unfortunately im also not getting younger. So though this won’t answer you question it could related to Polycythaemia vera (PV) but also other things too. Doctors and med specialist will say to go to an opticians to get them checked out and for them to look at the general health of your eyes. I remember noticing my eyesight getting worse when I was diagnosed and was proper concerned so paid for extra checks and scans but it was a waste of money as everything was normal and didn’t tell me anything different to a normal eye check. Tiredness and stress can also effect vision so I agree with everyone to speak and update your medical team but honestly/in a non progressional medical background I think they will just refer you to an opticians.
Do keep us updated as I’d loved to hear how you get on as it may help me with mine 
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If you’re not already doing so.. I’d advise wearing glasses when you start to feel a change, just takes the stress away from your eyes
Migraines and vision is a bit like a chicken and the egg conundrum
I’ve noticed not drinking enough or drinking too much spending too much time in the sun or eye straining conditions can make things worse
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