Retinopathy Advice/Experience

[domoboy]

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

 

[Kaylz]

Did you go from loose control to tight again quite quickly? This can actually cause eye issues, I'm only 4 years in but due to a drop of hba1c from 101 at diagnosis to 33 I developed diabetic macular oedema less than a month in, I had numerous eye injections for it and despite good control developed proliferative retinopathy in both eyes requiring lasering less than 2 years in, I really do envy long term diabetics that have no issues because I've been so unlucky but I guess it is just that, down to luck
xx

 

[Flower]

Hi @domoboy and welcome

There are 4 stages of retinopathy mild, moderate, pre-proliferative/non proliferative and proliferative. I'm assuming Grade 3 is the same as Stage 3 (not 100% certain)!

This site has excellent information on all things- again I'm assuming Stage 3 is pre proliferative retinopathy http://www.diabeticretinopathy.org.uk/pre-proliferative.html

It means that there are some significant changes in the retinas with small haemorrhages and tiny fragile abnormal vessel growth that can as @Kaylz said speed up due to up a rapid tightening of glycemic control and associated reduction in HbA1c. In milder forms of pre proliferative retinopathy you might be monitored more regularly by the clinic in a wait and see way or in some cases laser surgery/Anti Vegf injections such as Avastin/Lucentis will be necessary to seal off the areas of new abnormal fragile vessel growth in order to maintain as much healthy retina as possible.

It all sounds incredibly frightening but the treatment is a lot worse imagined in your head than in reality and is sometimes absolutely necessary to protect as much stable vision as possible.

You are doing all the right things with your control and the ophthalmology referral will advise you on the best next step with more close monitoring and/or some form of treatment.

I've been through the whole list of treatments for sight threatening /proliferative retinopathy about 30 years ago before the National retina screening was in place to pick up on treatable changes. Sadly the injections weren't around back in the 1980's and things have improved so much. It is frightening but there is every hope for an excellent outcome. Best Wishes.

 

[everydayupsanddowns]

Sorry to hear about the changes in your eyes @domoboy

Well done on your improved BG management. Hope any impact on your eyesight is fixable, and that any treatment you need is effective and can be arranged speedily. Sorry that the communication hasn't been all that clear, and that it has caused you understandable worry.

Let us know how your opthalmology appointment goes.