Advanced Retinopathy

[Coanda_24]

Hello, I’m posting just because I’m feeling a sense of fear and disappointment and just needed an outlet to share.

Had my annual NHS retinopathy screening 2 weeks ago and I received my report back from the screening service this morning. 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 3 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. Like I said just 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.

Edited for typos and grammar

 

[saffron15]

I was only diagnosed last July and postponed my first test as had a cataract op in October and a second in March. I've phoned the provider several times since but cannot get through. I've had uveitis [ inflammation of front of eye] for 18 years and gradually my pupils had stuck down so the back of my eye wasn't easy to see. Each op caused a flare of uveitis and I am still on daily drugs. I'm seen by opthalmology and in May one of the photos taken is what would be taken for retinopathy so my consultant has confirmed I'm clear but wants me to stay in the system for eyechecks. I wear glasses and pay extra for the screening you have at the opticians.

I don't know how long you have been diabetic but your weight loss and sugar control must be good for your health.



You could try speaking to your optician.
As far as I am aware they can offer laser treatment at the opthalmology department ie treatment.

I don't know the outcomes for the stages you have. I know a consultant looks at the results which is why I was grateful to bypass the screening and have my consultant tell me it was OK. I've been attending the retinal department for

18 years [ not every year] they are kind and professional at the hospital I go to.

Please don't get yourself stressed, my answer is a bit waffley hopefully people with more experience will be able to help. I'm only responding as someone who is very used to going to the Opthalmology department. I self refer and have been on a Saturday or Sunday.
After I had the first cataract surgery I had a macular oedema which took several months to heal, but it did.

You must be so pleased at your weight loss and excellent BG results.

 

[Coanda_24]

I was only diagnosed last July and postponed my first test as had a cataract op in October and a second in March. I've phoned the provider several times since but cannot get through. I've had uveitis [ inflammation of front of eye] for 18 years and gradually my pupils had stuck down so the back of my eye wasn't easy to see. Each op caused a flare of uveitis and I am still on daily drugs. I'm seen by opthalmology and in May one of the photos taken is what would be taken for retinopathy so my consultant has confirmed I'm clear but wants me to stay in the system for eyechecks. I wear glasses and pay extra for the screening you have at the opticians.

I don't know how long you have been diabetic but your weight loss and sugar control must be good for your health.



You could try speaking to your optician.
As far as I am aware they can offer laser treatment at the opthalmology department ie treatment.

I don't know the outcomes for the stages you have. I know a consultant looks at the results which is why I was grateful to bypass the screening and have my consultant tell me it was OK. I've been attending the retinal department for

18 years [ not every year] they are kind and professional at the hospital I go to.

Please don't get yourself stressed, my answer is a bit waffley hopefully people with more experience will be able to help. I'm only responding as someone who is very used to going to the Opthalmology department. I self refer and have been on a Saturday or Sunday.
After I had the first cataract surgery I had a macular oedema which took several months to heal, but it did.

You must be so pleased at your weight loss and excellent BG results.

That you so much for your reply. I don’t really have anyone to share this kind of thing with, so your response is much appreciated. I’m sure I’ll get excellent care at the hospital and they’ll do their best for me. Do hope that your own eye problems stable. Thanks again

 

[CatLady2024]

Hi I don't have any advice but I do hope you get the treatment you need I know this can seem so daunting. Also well done with the improvement on your sugars it's a great achievement. Hope all works out for you take care 🙂

 

[goodybags]

Hi @Coanda_24 please don’t feel it’s to late,

the retinopathy has been spotted within the NHS programme, you can soon expect a appointment with your local DMO clinic, the DMO clinic itself will most likely be attached to the eye department at your local NHS hospital, I know people who once seen by them and they needed minimal sometimes even no treatment and the risk was reduced, there are several types of treatment, as there are different conditions
the consultants will talk you through the most suitable if you do actually need treatment.

Although I have no medical qualifications myself, I know a little bit having had treatment for the last 10 years under the NHS at my local hospital DMO clinic, plus have had many conversations with other people in the waiting room as I regularly visit the clinic I am under.

Please come back and keep us updated on how you get on, the forum is a great place to offload and share experience to help others, I am myself at my DMO clinic on Monday of next week, currently I’m being seen every six weeks, at my last visit I didm’t need any treatment however the appointment prior I did, it’s great to keep a close eye on anyone is in need of treatment or monitoring to their eyes.

 

[Coanda_24]

Hi I don't have any advice but I do hope you get the treatment you need I know this can seem so daunting. Also well done with the improvement on your sugars it's a great achievement. Hope all works out for you take care 🙂

Thank you so much for your reply. No advice necessary, your kind thoughts are really helpful!

 

[Coanda_24]

Hi @Coanda_24 please don’t feel it’s to late,

the retinopathy has been spotted within the NHS programme, you can soon expect a appointment with your local DMO clinic, the DMO clinic itself will most likely be attached to the eye department at your local NHS hospital, I know people who once seen by them and they needed minimal sometimes even no treatment and the risk was reduced, there are several types of treatment, as there are different conditions
the consultants will talk you through the most suitable if you do actually need treatment.

Although I have no medical qualifications myself, I know a little bit having had treatment for the last 10 years under the NHS at my local hospital DMO clinic, plus have had many conversations with other people in the waiting room as I regularly visit the clinic I am under.

Please come back and keep us updated on how you get on, the forum is a great place to offload and share experience to help others, I am myself at my DMO clinic on Monday of next week, currently I’m being seen every six weeks, at my last visit I didm’t need any treatment however the appointment prior I did, it’s great to keep a close eye on anyone is in need of treatment or monitoring to their eyes.

Thank you for your reply. I hope you’re doing well now with your own eye issues. Thankfully - according to the GP report - my Macular is not affected. This is likely growth of new vessels. Your message is still reassuring and I’m really thankful you took the time to share your own experiences. I’ll definitely keep this thread updated.