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Advanced Eye Disease

T

Type2_2000

Well-Known Member
Messages
54
Location
East Midlands, UK
Hello, I’m posting to try and get a sense of other people’s experiences.

Had my annual NHS retinopathy screening 2 weeks ago and I received my report back from the screening service on Saturday. It talked about a change and a referral to Ophthalmology. I then logged into the NHS app and was able to view the GPs report, which indicated R3A in my right eye and R2L in my left. My last screening in 2024 indicated background retinopathy. I had an Optician’s check up just over 2 months ago with OCT scan and they saw nothing for concern: just the background Retinopathy and early stage cataracts.

R3A is active Proliferative retinopathy. I can’t believe it’s deteriorated so quickly.

I’m a long term type 2 and my control hasn’t always been the best. In January 2024 I developed some stomach issues and I lost significant weight. My sugars were 108 in January 2024 and by August 2024 they had come down to 35. I had a further test in January 2025 and my sugars were 32.

I know it was probably too little too late, but I genuinely felt I’d turned a corner with self care and health. I no longer take any medication and in January 2025 I was told I was in diabetic remission.

My sight at the moment seems good and not aware of any issues. But I’m just worried about vision loss. I’m scared at the prospect of the treatment too.

I have just overwhelming feelings of fear and disappointment.

One thing I have read is that rapid reduction of sugars can affect the eyes.

Saturday is a terrible day to get letters like this and now I just have to wait for my hospital appointment.

Thank you for taking the time to read this post.
 
I am very sorry to hear your news and I would be the same, I am due an eye screening next week not had one for years, due to a long period of remission. Very good luck
 
I'm very sorry you are going through this.

You've done a fantastic job in normalising your sugar levels and hopefully this should be good as regards any future diabetic complications, in eyes or anything else. That is a very real achievement that you should be very proud of.

The good thing about eye treatment for diabetic issues is they have been doing it for a very long time and have got very good at it. Personally I've had on again off again background retinopathy for decades, but not needed any treatment (yet) but happily go for my eye checks and will take any treatment necessary because I know that that is the best way to maintain my eye health. Yes, untreated retinopathy can cause blindness, that is why they treat it.

It's a known issue that fast reduction in hba1c can cause (temporary?) worsening in retinopathy, but I believe that the perceived wisdom is that the long term benefits outweigh the risks.

Worsening of diabetic retinopathy with rapid improvement in systemic glucose control: A review - PMC

Worsening of diabetic retinopathy (DR) is associated with the initiation of effective treatment of glycaemia in some patients with diabetes. It has been associated with risk factors such as poor blood‐glucose control and hypertension, and it ...
pmc.ncbi.nlm.nih.gov

Good luck with your appointment(s). There are lots of threads on here from people who've had successful treatments for various stages of retinopathy.

Lots of virtual hugs from New Zealand (and once again congratulations on going into diabetic remission).
 
Thank you so much for your reply. It really positive and helpful to think about it in these terms.
 
Hello, I just wanted to update my thread. I’ve had my appointment through for the Hospital. It’s in 2 weeks, which seems like an age! I’ve been able to get on with work and keep myself busy so I’ve been more productive than usually - building all those Power Automate flows I’ve been putting off for ages!

I just wondered if anyone could share their expedited of what a first NHS eye department appointment will entail? Thanks!
 
Type2_2000 said:
I just wondered if anyone could share their expedited of what a first NHS eye department appointment will entail? Thanks!
Click to expand...
Hi, I've been a regular eye customer for years, way before type 2 even struck.
During your appointment you will need patience.
First someone will take you in to do the Chart of Doom, or as they call it, the eye chart. After that they will probably apply some drops to dilate your eyes. These take time to work so you'll have to wait again. They may also do other tests or scans done by other staff in other rooms, one at a time. And you will sit and wait between each one. You can't read or see your phone at this point because of the drops.
Eventually you'll be called in to the doctor who already has the results of tests just done. He/she may use other equipment to look in your eyes. None of this hurts at all. It's just like a very protracted Opticians appointment .
Only after all that ( and one bad day this took 4 hours! Usually about 90 minutes) they'll discuss with you next steps.
Possibly prescribe drops, possibly wait and see, possibly procedure.
Eyes are slow, nothing happens quickly, healing takes time.

Do make sure you have a driver with you as if they dilate your eyes not allowed to drive until they are back to normal - that's several more hours for me. I find it more comfortable to wear dark glasses after as I'm particularly light sensitive .

I always take a hot drink with me, and a low carb snack in case it goes on and on. No food in the hospital cafe is low carb, none.

My wonderful consultant Opthalmologist says best care for eyes for t2s is too keep bg as regular, as low as possible. He also said if, for example, sugars have been affecting eyes for say 6 months, it will take six months to resolve, ie same time.

My eyes did go very blurry when first low carbing but settled in a few weeks. My problems stem from birth and from bad luck, not from diabetes. I've had 2 lots of eye surgery, 4 lots of laser treatment and am currently on 3 different types of drops a day, and I trust my guy implicitly. He is so determined to keep my sight going as long as possible. I've never felt pain from anything they've done. Some drops can sting a bit initially, thats about all.

Hope this helps. It will be fine I'm sure
 
That's exactly it @MrsA2 . The preliminary steps you outlined are the same here to. Nothing hurts except the puff of air in the eyes always startles me. I do like the expression the Chart of Doom. That's exactly what it is. I struggle to even read the large letters at the top. You are right you cannot rush eyes.
 
Thank you for your reply / it’s reassuring to hear about your experiences.
 
Melgar said:
. I do like the expression the Chart of Doom. That's exactly what it is
Click to expand...
What galls me is they always do my good eye first and so I'm led into a false sense of hope.
Then we go to my bad eye and its total disappointment. I get glimpses of letters but they jump and move around and come and go. It's really hard work to try to see.
It never changes so why do they put me through the embarrassment and effort? Why don't they do the bad eye first so I can experience a sense of relief and improvement when we move to my good eye?

Sorry rant over!

And @Type2_2000 please do report back how it goes for you. I read on here of people who's retinopathy changes over time, often for the better.
 
Both my eyes are bad, although my right eye is marginally better than my left. I have triple vision plus the background glare drowns out the dark text. As I go further down the chart the letters become blob like and then mere specs. I'm going for another round on August 1st. They will do a count of my endothelial cells in my corneas. They will assess my corneas thickness and then they will also count the number of guttae which I have quite a few apparently. If I'm really having a bad day then I see rainbows when I look at shiny objects outside.
 
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