Optometrist saw nothing wrong, ophthalmologist saw retinal thinning / pigmentation.

[PurpleJam2234]

Hello… looking for any advice and trying (failing) not to panic.

Saw an optometrist as eye floaters a bit more visible (had since 2017) and top right peripheral vision feels a bit off. They said everything was fine but I figured can’t hurt to see an ophthalmologist (as I have been taking hydroxychloroquine which can affect macula retina for 9 months).

Anyway, I passed all the tests for the retina (including the macula) apart from I have thinning and/or pockets of pigmentation on one part of the outside of my retina. She said and I quote “there is some thinning/pigmentation on your retina that I wouldn’t expect the see in someone your age”. Because I mentioned my peripheral vision she has asked me to come back to do a visual field test. Annoyingly, she is only at the hospital every other week so I am not going to be seen from another week still and I’m panicking.

Annoyingly I didn’t get a name for what she thinks it is and of course I googled it which has sent me down many scary rabbit holes. All from retinitis pigmentosa to freakles on my retina. She did say she wasn’t concerned but felt we had to do these tests to be completely sure.

I would love any advice or personal experience here. I’m worried I have either done this to myself with my medication (which is not supposed to affect the retina till after 5 years of use at a minimum so would be very strange) or that I might be slowly losing my vision completely.

I’m also wondering why the optometrist who did a dilated eye exam and all the photos missed whatever the ophthalmologist saw! Is that common?

Thank you for reading! X

I won’t mention which well known high street brand did this (mainly as I had to sign a piece of paper saying I wouldn’t talk about it), but I developed blurry vision out of the blue one day, and when I went to get it checked was told I had a small scratch on my eye. They sold me glasses. When I went back to get the glasses and said the issue wasn’t fixed, the guy shouted me down until I stopped talking. I had to push really hard for a referral to a specialist. Turned out I needed an eye op and when I went back and complained, they doctored the appointment notes to pretend he had spotted the issue at my first appointment. When I demanded the computer logs and asked for an itemised log showing when text was added with the time and date, they paid me off. Make of that what you will.

Between this and having the surgery I went to Boots optician for a second opinion on my prescription. The optometrist took one look at me and asked if I knew I had XYZ as I would need that resolving before getting a prescription. He was of the opinion there was no way it should have been missed or not mentioned at my original appointment. Same with the independent opticians I registered with after my surgery.

So yes, it happens, but it shouldn’t do.

@AllThePotatoesAreSinging thanks for the reply and I am so sorry this happened to you! That’s outrageous - was it one particular optician that you saw or everyone in the practice that gave you the run around?

I don’t know if in the meantime of waiting to see the Opthamologist again, I should go and get a second opinion at another opticians?

I also go to big named chain, no doubt we are talking about the same chain!

It was everyone in the branch, they ignored me initially, then tried to gaslight me. They told me I wasn’t shouted at - it had been witnessed by another staff member who initially agreed it had happened, then denied being in the room. My appointment notes changed weekly. First my eye looked perfect, then a scratch was recorded, then after the specialist wrote that I had a severe erosion they put that they had observed it.

It was only when the normal manager was on holiday and I went in to hand over my letter of complaint face to face (and told the covering manager that I was going to sue them as a branch, and as individuals) that anything happened, I got a phone call from a senior manager that afternoon. He tried to fob me off re the computer system saying it wasn’t possible to get logs in the way I was asking - at the time I actually administered the same computer system they used but for another company, and told him how to do it. They didn’t provide the logs of course.

Got an email from their legal team the next day with a not quite apology but an offer. Took nearly 5 months of back and forth. At the start I would have been happy with a simple apology that they missed it.

There are a few conditions which can affect the peripheral retina and can be very difficult to see for most optometrists.

They don't show up on a normal fundus camera which only shows the central part of the retina, even on a specialist wide field camera (called an optomap) you can only see 85% of the retina.

The second time I saw someone with a retinal detachment, I couldn't actually see the detachment as it was too far out in the retina, but I knew there was one due to other signs and symptoms.

Hydroxychloroquine classically causes problems with the macula, not the peripheral retina and as you said you've only been on it 9 months, so it's unlikely to be the cause. There are a few peripheral retinal conditions which cause pigmentation and most of the either need no action or annual monitoring as they carry a risk of retinal detachment.

Did the opticians do a field test when you saw them last time? That's a pretty standard thing to do if you have a problem with your peripheral vision.

Anyway, do feed back to the practice after you've seen the consultant next week.

@AllThePotatoesAreSinging that is completely unacceptable.

@Station11 thanks so much for the detailed reply. I guess I went silent because I’ve been so scared. 😟

I hadn’t had a field of view test done at the opticians but the Opthamologist did do them. Originally, I failed the GHT ‘outside normal limits’ in my right eye and then when they taped my eyelid (as it’s a little heavy) I passed. She said it is likely within normal limits or longstanding and to come back in August for a recheck. However, I just can’t quite shake that my top left vision is slightly blurry compared to the left. I didn’t have that before, so the longstanding seems off and paired with the damage makes me worried it’s pointing to something else more sinister.

Strangely, my eyelid feels off on the right eye and not the left, which I’m wondering might be a culprit/contributor for the blurry sense (I’m clutching a straws).

I actually just found out my hearing has been permanently damaged due to a medication so I am really freaked out now about my eyes. I called my ophthalmologist and she has referred me out for ERG/Optomap/Angiogram etc as I said I can’t just bear the wait to find out what’s going on.

That is on Thursday and I am not coping with the fear of what it might be.

Anyway, I will come back to post as part of an update not to completely abandoned a thread. Especially if someone has something similar and wants to know the outcome. I feel a right mess right now. X

I just wanted to pop a message on and say my sister was told something very similar but when further investigations were done it was all fine and they found she did have a freckle in her eye but it wasn't an issue. I hope you get some answers soon 🤞🏼 x

@eyebagsfordays I would literally cry tears of joy!!! I hope it’s the same.

Just not sure what the blurryness is or if it’s my mind playing tricks on me! Xx

Oh I came on here to say you need an Optomap scan! It's the only scanning device that sees into the periphery of the retina, none of the others do.

Good luck!

@IDontFeelItAnymore thank you! Hopefully having that on Thursday 🤞 xx

Not sure if this is reassuring but I am extremely short sighted (-9.50 both eyes with astigmatism) and have a freckle in my eye and also have lattice retinal degeneration and something else called white without pressure which is fairly rare. Opticians etc are always worried when they first check my eyes because I’ve got so much going on - and I’ve had posterior vitreous detachments in both eyes which gave me similar symptoms to a retinal detachment so has many checks for that too - but - touch wood, everything is okay, I haven’t needed any treatment for anything. My eyes are just odd. And of course I have to be careful of retinal detachments as I’m more at risk of those due to everything going on but I also know like everything else a lot of it is just luck - I know a teacher at my dds school who had two retinal detachments and her eyes were “fine” she wasn’t even short sighted! And then you get people like my Mum who was -12 both eyes and all the same things as me and never had anything happen. So yes get it checked but try not to panic.

@PurpleJam2234 I appreciate this is an old post but wondering what the outcome was for you? I really hope you were and remain OK!