I had an eye test this morning and the optician said my blood vessels at the back of the eyes are a little wavy and said this can be associated with blood problems or high blood pressure? My blood pressure is usually normal so I'm wondering if it's anything to do with ET. She said she's not worried and to just mention it when I next see the hemotologist but I am worried 😥 she said my vision is fine I wear glasses but there's only been a very slight change in the past 2 years.
The optician said it may be associated with ET has anyone ever heard of this condition in relation to ET????
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Camelian
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I haven't heard of it, I had my eyes tested the other day but nothing was said about that. He'd never heard of ET, just asked what drugs I was taking and when I told him Anagrelide for ET he had to look it up.
He did say that there was a start of a cataract in my left eye but I didn't need to worry about it for at least 5 - 10 years - of course I've orderd a white harness for my labrador as I think it will form overnight. I think we do tend to worry about the slightest thing that may be connected to ET, but is probably nothing. (by the way I haven't ordered a harness I was exaggerating) I hope you're ok x
I know what you mean about the harness and Labrador I've been doing the same ☹️it always goes from 1 to a million with me no in-between straight to worse case scenario. Can't wait for Monday to follow it up. I'll never have a test on a Saturday again ruined my whole weekend. Worry worry worry.
Yes. I have blockages in the veins in my eyes. The haematologist says it's nothing to do with ET. My eye consultant says it is most likely that and high blood pressure, which i do have! Or had when I had the tests. Mine has caused swelling in the eye either side of the macular and so I am due to have laser to 'blast' them. I am told that if the swellings meet and I get a burst in the vessels of the macular, it will result in blindness in that eye.
I too am not affected visually but I can feel a tightness in the eye. Hope that helps.
Thanks for your reply ive been on Google Doctor ( big mistake) and there's a lot of scary stuff about blindness 😵
From what I can understand of what I've read it's caused by hypertension which I don't have? It does mention blood flow problems etc etc ???
It's quite worrying in that I have regular eye tests and it's never been mentioned before indicating it's recently developed? I've been having eptopic heartbeat s so I'm wondering if it's related to that? I'm having a 24 hour monitor for the missed beats on the 19/12/19. I'll contact the hemotologist tomorrow and then the GP.
What does the laser treatment do?
Is it treated as an emergency? The optician didn't seem overly concerned??? Which is strange if it can result in blindness??
I cannot imagine you have the same as me. If there is no mention of swelling in the eye, then you are in no danger and even so, if there was, he would have done something about it.
I was just agreeing with you that according to my eye consultant, it is most likely linked to my ET. BUT, at the time, I did have extremely high blood pressure. Now under control. Don't look at Google doctor! Only look on this site and other recognised researchers. Don't scare yourself. It's not worth the extra angst! P
Retinopathy can also be associated with diabetes. That is why those with diabetes have annual retinal checks.
I’ve been referred a couple of times by my optician for wavy blood vessels and some small bleeds at the back of my eye. Ophthalmology haven’t been concerned about them and they seem to have resolved spontaneously. No suggestion they are linked to my ET but they like to keep a close watch as I’m on aspirin and interferon...
Thankyou Andy that's reassuring I've been really worried. I'm only on aspirin at the moment but will go on hydroxy when I'm 60 im 58 now .
The optician didn't discuss any follow up she just said mention it to the hemotologist. I've never heard of this condition before so I'm not sure what to expect? It's reassuring ophthalmology weren't too concerned about the condition. When you say they keep a close eye on you who are you referring too?
Hi Camelian - my optician keeps a close eye (excuse the pun!) as he’s aware of my ET and meds and my haem watches for any reports of eye problems as they can be a rare side effect of interferon. Aspirin can exacerbate bleeding anywhere on the body as it makes platelets less sticky. I don’t have hypertension but do have a family history of glaucoma, so they monitor my eye pressures too - thankfully those are still normal.
I’m reassured that the ophthalmologists have given me the ok but pleased to have had it checked out - better to be over cautious than ignore it until too late!
I’m sorry to bother you but could I possibly ask what your results ended up to be?
My 15 year old daughter had a regular optician checkup the other week and the optician told us she had wavy blood vessels behind the eyes and that we should speak to a GP and book a blood test. She’s very anxious about it and has a phobia of needles and I’m slightly worried what it could be
Would be great if you could put my mind at rest a little bit
At my request the optician wrote a brief letter for the hemotologist just saying she's identified tortious blood vessels behind the eyes she wasn't able to comment on the severity ? The hemotologist was a little surprised, as was I, she couldn't give any further details ? The hemotologist didn't think it was related to ET but I later found some information indicating it could be related to ET and I gave the information to the hemotologist to read but there was no follow up. To be honest I'm still none the wiser. I did have a period when my BP was raised but the GP was monitoring it for a few weeks and said the average reading was ok and put it down to white coat syndrome so still no anwers? I probably should get it checked again but as I have no baseline I won't know if it's got any worse. Sorry I can't help further I hope you get some answers. I'll let you know if I find out any more information about the condition.
How strange hat she couldn’t determine the severity? and that still to this day you’ve had no definitive answer?! it’s all very confusing when they say this type of things and whilst i understand it’s for our benefit they do concern us and never fully explain what’s happening! my daughter has her blood test in 5 days so hopefully get some results in a few weeks. I’ll let you know if we get any results!
To be honest over the last year I've had a number of health issues some related to ET which apparently is now PV and some not so it's probably my fault it hasn't been followed up. The hemotologist did mention referring me to an eye specialist but I think he may have forgotten as he's been sorting bmb and scans and venesection . I'm glad you posted to me because I'd put it to the back of my mind as I've been worrying about the other things so you reminded me and I'll mention it to my hemotologist at my next appointment in a couple of weeks.
It appears your daughter is being followed up so hopefully you'll get the answers.
Thanks Andy yes I agree I'm glad I had the eye test and I'll follow up. It's strange the optician hasn't said anything about reviewing because eye tests are 2 yearly and a lot can happen in that time? Andy are you in the UK?
I'll speak to the hemotologist tomorrow and see what he says and take it from there.
Andy thank you again I feel so more relaxed since reading your post you've helped me a lot.
Hi Andy I certainly will ask for yearly checkup. I phoned the optician today to find out about the follow up she wasn't in work but the receptionist read her notes which just said she'd identified tortious vessels and to be reviewed in 2 years? I've requested she call me when she's next in which is Thursday and I'll ask a few more questions and request yearly reviews.
I phoned the hospital and left a message for my hemotologist informing him of the diagnosis and requesting he call me to discuss so it's just waiting for him to contact me now.
For now no more I can do.
Can I ask if you had any symptoms associated with the condition? I've been experiencing shape stabbing pain in my eyes but the optician said it's probably dry eye ? She asked if it gets worse when I'm on the computer and I said it does which seemed to convince her it's dry eyes??
I went blind in my right eye due to a venous massive bleed.. had an OP 6 months later because the blood wasn't clearing on it's own... the eye specialist sent me to hematology and that's when they discovered I had e.t jak 2+.... my eyesight is ok now in that eye.... but they said anyone who has this type of OP will get a cataract at some point in the future.... I had , had high platelets for a while, but because I also have Behcets disease, they had put it down to that, but we now know it wasn't that.....
I have ET jak2+ my platelets usually go between 413 to 480. I'm only on aspirin at the moment but have been told I'll go on hydroxy when I'm 60 I'm 58 now.
It's been a real emotional rollcoaster since the optician told me I had tortious vessels. I contacted my hemotologist but he said there's no need for him to bring my next appointment in February forward?? No change in meds no action at all??
I'm just worried the same thing that sadly happened to you is going to happen to me and the frustrating thing is there doesn't appear to be anything that can be done to reduce the risk of this horrible thing happenings 😱
With hind sight do you know if there was anything you could have done or the professional s could have done
Behcets disease can cause eye inflammation does that include the blood vessels?
Have you been told the blood vessels behind your eyes are wavy?
Is it now thought your bleed was due to ET ? My understanding is ET means you produce too many platelets which may cause a clot? I've read ET can cause bleeds as well although to be honest I don't quite understand how really??
It must have been very scary for you. I'm glad you regained your eye sight. I'm sure there will be something they can do to stop a cataract developing in the future if not you can have the cataract removed I believe this is a common procedure these days.
This is something to consult with a MPN-Specialist about. The short answer is yes to ET potentially being associated with issues in the vessels in the retina. "Wavy vessels" is a bit of a casual term I expect. You may want to get more specific and look into the terms tortuous vessels, retinal vein thrombosis and vascular occlusion. I have no idea whether this is what you are describing, but it will help if you understand the conditions that are known to be associated with ET. Here is just one article on this topic.
It is very important for you to follow up on this. It could certainly be something benign, but best not to assume when it comes to your eyesight. Follow up with a MPN specialist (not just a regular hematologist) is very important. Ideally, if you can find a MPN Specialist based out of a major hospital center that would be best. That way you can see both a hematologist and an ophthalmologist based out of high caliber institution and they can collaborate more effectively. I travel to Johns Hopkins in Baltimore precisely for this reason. Here is a list just in case you have not already seen it. mpnforum.com/list-hem./ .
I’m aware this was a few years ago now but I’ve just stumbled across this thread. I have MPN ET and I’m on Apixaban and Hydroxy. My optician has twice raised her concerns about damage to the blood vessels at the back of my eyes and showed me the images she took where they are all very wavy except one on each eye. I mentioned her concerns to my GP who monitored my blood pressure for two weeks. My blood pressure readings were always fine, slightly low and so nothing further was done. I saw the optician again and again she expressed her concern so I’ll mention it to my haematologist when I next see him.
Did you find out any more information about your ‘wavy vessels’ and possible links to MPN Camelian?
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