Type 1's Retinopathy

[JoeJOns]

Hi guys,

Can I get a show of hands from some type 1 diabetics who haven't developed retinopathy over the years or months of their diabetes? Just as a bit of inspiration! I have my appointment with the eye doctor soon.

 

[mikeyB]

I've had T! for 23 years with not a sign of retinopathy. Or neuropathy, come to think. Complications aren't compulsory or inevitable. Good control can get you a long way.

 

[Pumper_Sue]

I had a little retinopathy after 52 years of type1 diabetes and none since.

May I point out Joe there's no chance of you ever developing any complications because you will have died of worry long before they happen if they do 🙄😛

Please please stop worrying about what might happen as it might not. Just enjoy the gift of life you have been given.

 

[Maz2]

I've had T! for 23 years with not a sign of retinopathy. Or neuropathy, come to think. Complications aren't compulsory or inevitable. Good control can get you a long way.

That is good to hear MikeyB..

 

[JoeJOns]

I had a little retinopathy after 52 years of type1 diabetes and none since.

May I point out Joe there's no chance of you ever developing any complications because you will have died of worry long before they happen if they do 🙄😛

Please please stop worrying about what might happen as it might not. Just enjoy the gift of life you have been given.

I have never agreed with someone more in my life

 

[JoeJOns]

I've had T! for 23 years with not a sign of retinopathy. Or neuropathy, come to think. Complications aren't compulsory or inevitable. Good control can get you a long way.

it is a great inspiration when you see someone like yourself who has had diabetes for so long and be free from any complications🙂 I hope I will be similar🙂

 

[everydayupsanddowns]

28 years in and I am currently running ‘all clear’

I’ve had a couple of eye checks where they’ve noticed the very beginnings of background changes (the letter they send is TERRIFYING and really badly worded) but these have always cleared up by the next year.

Try not to worry. With the results you’ve shared so far you’ve got decades to go before you are likely to see any changes unless you are very very unlucky.

 

[TomW]

21 years of T1 here and the only time I have ever had any retinopathy was this year, immediately after bringing my Hba1c down from 7.5% to 5.9%, through getting access to a pump and CGM (and hard work...). Worth remembering that the first stages of background retinopathy often pop up temporarily if you've been putting a lot of effort in to bringing levels down a bit too, but they usually go away again pretty quickly too 🙂

+1 for the terrible letters they send by the way... That process needs a lot of improvement.

 

[everydayupsanddowns]

+1 for the terrible letters they send by the way... That process needs a lot of improvement.

I’m involved in a HCP/PWD group which is looking into this and was in the process of publishing a paper in the BMJ on the subject.

 

[Bruce Stephens]

I'm a couple of years off 40 years now, and apart from one year I've always been "background retinopathy, see you in 12 months". (In the earlier years (before the photographs) that's probably less meaningful.)

The one year was when I had a (benign) brain tumour, which messed up my control. Back then my control probably wasn't that great anyway, but the tumour made it much worse and they wanted a couple of 6 month checks. Anyway, after the tumour was removed and my control was back, my retinas improved and I was back to 12 months.

 

[JoeJOns]

21 years of T1 here and the only time I have ever had any retinopathy was this year, immediately after bringing my Hba1c down from 7.5% to 5.9%, through getting access to a pump and CGM (and hard work...). Worth remembering that the first stages of background retinopathy often pop up temporarily if you've been putting a lot of effort in to bringing levels down a bit too, but they usually go away again pretty quickly too 🙂

+1 for the terrible letters they send by the way... That process needs a lot of improvement.

Hi, if you don't mind me asking how long were you up at 7.5% in your Hba1c before you brought it down to 5.9%, I was diagnosed with type 1 about a month ago and got control over it but i am hoping that wont affect my eyes going from DKA to controlled blood sugars. Glad you are doing so well now!

 

[SB2015]

Only 12 years in.
No sign of retinopathy.

 

[trophywench]

I was told I had background retinopathy in one eye in the early 90s by my optician - my D consultant at the time said 'He must have better eyesight than me then!' I moved area and my new hospital used to send you to the eye hospital on site where they used a slit lamp thingy - the optician was correct. Approx. 20 years later the other eye joined in.

As far as I'm currently aware they are still like that.

 

[TomW]

Hi, if you don't mind me asking how long were you up at 7.5% in your Hba1c before you brought it down to 5.9%, I was diagnosed with type 1 about a month ago and got control over it but i am hoping that wont affect my eyes going from DKA to controlled blood sugars. Glad you are doing so well now!

Oh quite a while! Hovered between 7 and 8 for most of my life before I started using tech more. It definitely wouldn't have an effect immediately in circumstances, I'm not sure of the exact science of how it works but I believe it only gets temporarily worse if it's a really sudden shift from a long term level to a lower one and you won't have been in DKA for a long time before being diagnosed.