Retinopathy Advice/Experiences

Hello everyone,

I've read a lot about retinopathy online from various sources but was hoping for some people's actual experiences and advice.

I'm a type 1 diabetic and have been since the age of 7. I am now 27. My diabetes was extremely well controlled (long term bloods consistently around 5.5-7.5) up until around the age of 23. I also had regular retinopathy appointments every year and optician appointments with no issues.

For around 2 and a half years from 23 to 25. Between these years I got out of a lot of good habits (regular testing and appointments) due to severe depression from a relationship failure which was also emotionally abusive. During this time I would "go with my feeling", not test for very long periods and also often forget my long acting insulin glargine.

Since May 2019 things in my personal life got a lot better, and I slowly stated to get into good habits. Back on my regular glargine etc. (From the age of 23 to 25 I moved jobs a lot from Yorkshire to Manchester to London and wasn't referred to a diabetic nurse or for retinopathy).

In June 2019 I signed up at a local GP's to get the ball rolling on a diabetic review and a retinopathy. My appointment for my retinopathy took an age and was meant to be march this year but got cancelled due to Covid. In July 2019 I went to the opticians. I've always been short sighted but never enough for glasses and I had recently realised a slight blurriness to my vision. Only very slight. The optician looked at the back of my eye, said the images she could see said all looked fine but still to go to my retinopathy. She said I was however a bit short sighted and I got prescribed glasses for driving.

Since May 20 this year, I've been regularly checking my blood sugars 5 times a day, even during the night and have noticed huge improvement in my sugars over the last 4 months. My retinopatht appointment finally came around a week ago. Yesterday a letter came through referring me to opthalmology with no reason why in 10 days time.

I've chased this with my GP who just had a referral and told me to speak to the diabetic eye screening centre. They've access my letters and said I've been referred as there's been "significant change" since my last retinopathy (5 years ago) and it was grade 3 referral. They said grade, not stage, although I'm guessing these are the same things?

Of course I'm worrying. I've done well to get back on track and regret letting it slip for a couple of years. My diabetes is coming under tighter control and I'd imagine my next h1abc to be around 6-7.5mmol. My vision if anything since my opticians appointment last year seems to of improved slightly, still only use my glasses for driving, and I'm showing no other symptoms.

Would love to hear people's experiences and any opinions on my current situation and how serious it is...

Thankyou

Thanks ever so much for your reply.

It does sound very much like I've got my referral letter before my screening one!

It's great to hear some of the successful laser treatment options on here.

After doing more reading I have a sneaky feeling it may be maculopathy (after doing the amslere test, my left eye see's the grid fine but my right has two very slight warps/disappearing lines very near the centre point) but only time will tell. I will keep this thread updated with how it goes at the appointment and after.

On a side note, do we know if the thinking is that consistent higher BG is more dangerous to eyesight than low, high bouncing glucose levels affecting the pressure from one end to the other? If there is such a thing as a lesser of two evils out of curiosity!

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Hi @Dark Horse this was my letter. Presuming this is pretty much the same as the one you described? The wording worries me slightly!

"Your test result showed that you have signs of advanced sight-threatining retinopathy. This means there were serious changes to the blood vessels in the retina at the back of your eye.

We are referring you to a specialist who will discuss options to prevent sight loss. You will get this within a few weeks

Hi all and @Dark Horse

Just been for my appointment. Had all the usual photos and examination. It was quite a brief consultation but essentially went like this:

- On the initial screening 3 weeks ago, they noticed lots of what looked like small spots, suggesting new blood cell growth. On today's screening they cannot see any evidence of blood cells growing which is a positive sign.

- There is however a bleed behind each eye. He thinks there is a slim chance that these might be obscuring the small spots spotted originally. So I am booked in for a dye test on the Christmas eve and see the consultant again on new years eve. He wanted to make sure this wasn't the case. He feels the small spots and/or bleeding may if been because of my sudden control.

So all in all, potential positive that I'm not showing the small spots on the retinopathy. However, bleed between both eyes and he said he imagines I'm displaying anything from moderate to severe/significant retinopathy.

Would love to welcome thoughts and people with similar experiences if reading! And how worried I need to be about the bleeds, success rates and if I'm wrong to be feeling a tad more positive!

Can repeated low blood sugars such as hypos cause bleeds also?

Thanks!

NicoleC1971 said:

Hi

Glad you got to your screening appointment and are now in the system for regular review. Retinopathy can progress slowly bearing in mind that they picked up changes across 5 years to prompt this referral. It is likely that on the next appointment and with continued tight control your eyes will remain stable with 'background changes' that are not unusual for someone who's had type 1 for 20 years plus including a turbulent period (Ken Silvas the Australian pathologist mentioned this in the context of the damage done in different age group from having higher blood sugars).
It can be a shock to see that there were consequences to a period of unstable blood sugars. It was to me anyway as I thought that I was immortal in my 20s having been diabetic since age 10.
Like you I had some roller coaster blood sugars whilst a young adult but what really accelerated my retinopathy was a pregnancy in that whilst pregnancy I was well controlled and then all hell broke loose again once I'd had my little girl and found it difficult to focus on my own health. My feeling is and this is hard to confirm, that it was the up and down nature of my control plus growth hormones involved in pregnancy that exacerbated the rapid proliferation of my leaky blood vessels that then lead to major bleeding. So it seems having stable blood sugars will help you prevent the damage and subsequent repair attempts that cause the problem.
As to your question now we have freestyle libre we can look at time in range and see if having a good consistent average is better than a very spikey profile which is information that the hba1c doesn't give us!
Can talk more about treatment I had 17 years ago (laser and then an op) but suspect you are nowhere near that yet and things have probably moved on anyway.

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Hi @NicoleC1971,

Thankyou ever so much for your reply.

That's really interesting. I'm already in the process of getting a freestyle libre monitor just for ease really! I still get my high and low warning signs, but have a bit more trouble gauging which direction my blood sugar is currently traveling in so that should be a great help.

I'd really like to hear about your treatment even if it was a while ago. Have you had any major issues from the treatment, hows the sight now etc.

I've just highlighted a bit you said in bold. At this stage he's said I'm looking at moderate to significant retinopathy (although no sign of small blood cells attempting to grow as originally thought, looks more like a bleed behind each eye) are you suggesting that it's possible it is a background retinopathy at the moment, just with some bleeds? Or that I could remain at my current stage with tight control and the ''backround changes and remaining stable'' will keep me at my current state and not improve the retinopathy (or the bleeds)?

Hope that makes sense!

NicoleC1971 said:

Yes makes sense I think.
I feel it would be wrong to say where you are but the aim of the game is clearly is to stop progression by getting monitored regularly then treated if anything does develop. If you have no active bleeds and haven't been sent for treatment it sounds as if it might be background bleed/swelling. Are you being seen in 3 months?
Treatment - I had background retinopathy with no changes to may vision and then it accelerated over Summer 2003 (5-8 months after the birth of my daughter).
I had a many cycles of laser treatment which was uncomfortable and stopped me from driving just after it had been done. I had the same dilation drops put in that you will have had during your check ups. Then a technician tried to seal off the bleeding vessels for about 30 minutes per eye.
That does usually work but for me it didn't for the afore mentioned reasons (wobbly blood sugars and stress I think) so in about September 2003 I had a major bleed in 1 eye but could still drive. Got signed in for a vitrectomy.
I took myself off the road and haven't driven anything more than a bike since.
Later on that year, I lost sight in the other eye.
It was a bit scary but my surgeries (double vitrectomy) got brought forward to January and March of that year.
Both successful and my vision is reduced (about the 2nd or 3rd line of that sight chart) but I have a bus pass and cycle a lot. It has got me into fitness and I now have 3 children and work full time so it hasn't hindered me. My eyes are totally stable now though it will probably speed up a need for cataracts op at some point.
There are no guarantees around all of this but I think I was lucky to have a great surgeon and to have this happen in 2003 where in prior years my condition might have led to total blindness.
Still I hope you remain at base camp with your condition which will make all the finger pricking worthwhile though swiping will be much easier so hope you jump through those fsl hoops too.

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That's really interesting @NicoleC1971 . Can I ask, when you lost your sight in the eye and the major bleed did you suddenly wake up one day like that or was it progressive symptoms over months/weeks/days?

I'm glad to hear you are stable now. To answer your questions with where I am.

- Initial retinopathy screening mid November. Saw signs of advanced retinopathy and small spots of blood vessels attempting to grow.

- 8th of December , Consultation at opthalmology today and further photographs and screenings. No sign of the small spots of blood vessels, but bleeding spotted in both eyes. Wants a dye test to make extra sure nothing is hiding behind the bleed rather than jumping straight into laser. (Said looked anything from moderate to significant retinopathy)

- Dec 24th - dye test and further photographs

- Dec 31sr - consultation appointment to discuss dye results and what's next

Dark Horse said:

I'm afraid that I don't recognise your description of what was found at you hospital examination - I think something may have got lost in translation. It sounds to me like the screening service suspected new vessel growth which wasn't seen at your hospital examination but the ophthalmologist wants to be sure so has recommended a Fundus Fluorescein Angiography (FFA) which is explained here:- https://www.guysandstthomas.nhs.uk/resources/patient-information/eye/fundus-fluorescein.pdf

If the FFA shows no new vessels, you would likely be monitored and advised to main good control of diabetes and blood pressure in order to reduce the risk of further progression.

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@Dark Horse

Yes it's a very odd one.

He said he didn't see evidence of new vessel growth which is a positive as the initial screening showed that, however I do have a bleed behind both eyes which may be obscuring it, so rather than jump into laser he wanted a FFA to make sure no new growth was hiding behind the bleed. He then still mentioned something about moderate to severe retinopathy.

I've done the amsler test since at home, and whilst I see no issues with my left eye, with my right I can sport two very clear blurry/blind patches on my right eye. Since noticing them, I can't stop! It's very near the centre which from what I've seen sounds like maculopathy?

I've read that laser/injections can make the maculopathy worse for a few weeks for recovery but then most notice improvement. Is this improvement compared to just after the procedure, or improvement compared to what it was before the laser/injection/s?

Thanks again!

Hi all,

Just to update.

Went for my dye test yesterday. Showed what the consultant expected and he fit me in 2 hours later to do laser on my right eye.

I think he did approx 200 shots all around the right eye. He said the reason for my slight blur spots near my central vision on my right were due to blood spots that had leaked into the macula. He said that isn't good but to see how laser goes and this is definitely the right thing to do for now. He said he seemed happy with how the laser went, only aftercare instructions were painkillers for next 24 hours! He said there was also a chance my eye will fight the laser and my macula may swell which I would need an injection for.

I am booked in on the 7th for another dye test to see if I need anything doing to me left eye.

Yesterday post laser I didn't notice too much difference to my right eye vision bar a bit of light sensitivity and discomfort. Today since waking up my right eye is considerably blurry compared to normal. Presuming this is just the after effects of the surgery, nothing to worry about and should sort itself within a few days?

Hi all,

Just a bit of an update on the above!

First of all, in terms of diabetic control my h1abc is now currently 73. Previously it was 85, so around a 10% reduction. My consultant is happy with this as he is worried in regards to rapid improvement progressing the retinopathy. I am aiming to be around the 65 mark in a few months time to keep this steady.

On the 24th of December I went in for PRP laser on my right eye (about 20mins), and then the same again on the 20th of January for my left eye. The only side effects I've experienced so far has been flickering/flashing light sometimes around the corners of my eyes. Apparently this is quite common and is due to nerves/sensors in regards to lights. It's not even annoying or anything like that.

Today around 6/8 weeks on since my laser, I went in for a review to see how my eyes were responding to the treatment. Last time he was there he said the early signs were some good scarring on my right eye suggesting good laser, and that is the swelling is still there as a reaction to the laser I may need some injections. Currently experiencing no worsening of vision, and seemed quite stable since December, and if anything, a slight improvement in sight in my right eye near the blur spot. Although this may purely be psychological.

Upon examination today he said it looks like my eye hasn't quite responded to laser in the way he had hoped. Apparently the eye is still ''looking quite angry'' in the background and it seems a bit aggressive as there is still evidence of new cells growing in both eyes. Previously I had a blood/blur spot on my right eye near the macula, which is still there. But he feels my eyes may be a bit leakier now as a reaction to the laser, and there may be some potential ones on my left eye. He said it's quite uncommonly close to the center on my left macula area.

He said the next step will be to see him next week for some Lucentis injections (ranibizumab) in both my eyes (a course of 4 injections over 4 months I think) and also potentially laser at the same time alongside it.

So all in all, maybe a bit disappointed as from my own feelings since laser my vision has been stable, and even felt a bit better (although I understand this is all detectable in the background)! but also happy that there is a course of treatment coming up, as I have also heard that the anti VGEF injections are quite favorable results wise, and should aid both stopping the new growth and helping with the leaking. Has anyone had experience of this?

Just to update further - I am now having laser surgery this Thursday and commencing injections on Monday. I thought it would be the other way round to help with swelling!

@kaylz91 - Sorry for tagging you. Just been trawling through the forum for injection experience. Do you mind me asking about your experience and id you had problems with vision prior to the injections, and if you noticed improvement after? Or prevention of worsening?

kaylz91 said:

@domoboy don't worry about it, it's fine!

Well I was diagnosed Type 1 November 2016, I'd noticed my vision wasn't the best just before that, I mentioned it on a forum and was told by more experienced members to leave it, it was normal, it would get better etc and I did for a couple of weeks but my gut told me something wasn't right, I could barely read, bright red numbers on a clock were very dull and I struggled to be able to tell what the numbers were so I booked into the optician and was referred right away to ophthalmology, I was seen early on in December and diagnosed with diabetic macular oedema in both eyes due to a plummet in hba1c they believe, anyway I was booked in to receive a course of 3 injections in each eye over 3 months, each eye done a week apart, I had my first one before Christmas 2016, the thought scared the hell out of me but it really wasn't as awful and terrifying as I'd thought, they clean your eye, tape your eyelids open, insert a spring between to make sure it stays open, numb your eye with a swab, mark exactly where they are going to insert the needle, apply some more anaesthetic and then do your injection, I had bubbles in my sight for around half an hour after but there are different types of injections and I had 2 types, 1 type for 1 eye and 1 type for the other, it wasn't sore afterwards unless I forgot and rubbed it, my sight was off for the rest of the day, so much so I needed someone to tell me what my BG was when I tested and had to rely on the clicks for my insulin but I woke up the next morning and the improvement was amazing, I could see the bright red numbers again, after my course was done the ophthalmology consultant said I was the best case he'd seen and dealt with after the treatment, I have required a couple of top up injections since, then for the lasering it is worse in my experience than the injections, they can't see nerves so do occasionally catch them and it is on the nippy side but it only lasts a second and they will allow you to have a breather if it becomes too much, I had both eyes done in the same session, again vision was off for the rest of the day and my eyes felt very gritty when I blinked but nothing unbearable

Sorry I haven't read your full post but will do that this afternoon and sorry if I've babbled too much!
xx

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Honestly thank you so much!

Very re assuring to read. I've had a session of laser in each eye so far in December and January, then I'm having more laser tommorow afternoon for the retinopathy and injections on Monday for the macular edema!