Hello & some advice please [emoji3]⭐️

[Vix85]

Hi everyone

Just wanted to introduce myself and say ‘Hi!’
I’m Victoria & have now been diabetic for 30yrs ️ (Yes, I’ve given myself a trophy.. lol!)

I was a terrible teen, not wanting to be different or have a bad hypo (after having a bad seizure) so I ran my sugar levels high

I made a bit more of an effort in my mid twenties but being career driven, my health took a backseat..

I don’t have any horrific complications just yet but.. I do now have pre proliferative retinopathy, and although I don’t need treatment just yet, I’ve got my next appointment in 3 months.

I am terrified of it progressing!

What else can I do apart from maintain a healthy lifestyle and good control of my diabetes? Do you think the NHS advice is sufficient? I adore the NHS and will always be eternally grateful for the care I’ve received to date.. but I sometimes wonder if it’s worth getting a private consultation, I always worry as I have the sort of luck where something would be missed on a test..

Really grateful for any advice!

 

[EllieM]

I'm not sure whether what you have is the same as background retinopathy, or one level further? (Google is slightly contradictory as to the difference between pre-proliferative, non-proliferate and background ). I know that background retinopathy can come and go and just needs to be monitored. I suspect (hope) that non-proliferative is the same, though you may need more frequent checks. If it's any consolation, when I was pregnant with my first child at 30, the eye specialist said that I'd probably start needing laser treatment at 40, but at 57 I'm still being told my eyes are fine (on again off again background retinopathy) and haven't needed treatment yet. And they're much better at monitoring and treating diabetic eyes than they were a few decades ago.

Haven't lived in the UK for 20 years, so don't know whether private consults are necessary (my gut feeling is not if you're already seeing a hospital clinic, but I may be out of date). My eye specialist in Sydney advised that aside from good diabetic control it was fast changes in blood sugars that did damage - she wasn't a fan of hypos. (But then as a T1 I hate hypos too. )

49 years T1 and I was a terrible teen too (pre glucometer, so I don't know how terrible, but I used to get very thirsty on occasion).

Try not to panic. The most important thing (aside from reasonable blood sugar control) is to keep monitoring your eyes. If they miss something in one test, they'll pick it up in the next, and there are several stages to go through before active treatment is required.

Good luck.

 

[Vix85]

I'm not sure whether what you have is the same as background retinopathy, or one level further? (Google is slightly contradictory as to the difference between pre-proliferative, non-proliferate and background ). I know that background retinopathy can come and go and just needs to be monitored. I suspect (hope) that non-proliferative is the same, though you may need more frequent checks. If it's any consolation, when I was pregnant with my first child at 30, the eye specialist said that I'd probably start needing laser treatment at 40, but at 57 I'm still being told my eyes are fine (on again off again background retinopathy) and haven't needed treatment yet. And they're much better at monitoring and treating diabetic eyes than they were a few decades ago.

Haven't lived in the UK for 20 years, so don't know whether private consults are necessary (my gut feeling is not if you're already seeing a hospital clinic, but I may be out of date). My eye specialist in Sydney advised that aside from good diabetic control it was fast changes in blood sugars that did damage - she wasn't a fan of hypos. (But then as a T1 I hate hypos too. )

49 years T1 and I was a terrible teen too (pre glucometer, so I don't know how terrible, but I used to get very thirsty on occasion).

Try not to panic. The most important thing (aside from reasonable blood sugar control) is to keep monitoring your eyes. If they miss something in one test, they'll pick it up in the next, and there are several stages to go through before active treatment is required.

Good luck.

Good morning!

Thank you so much for your reply

I think it’s one up from what I can tell, but I had maculopathy 6 months ago ‍ and this doesn’t seem as bad, but I may be wrong!!
I’m going to give the ophthalmologist a call and ask some questions, they were very helpful last time.

Oh wow that’s great you’re doing so well! 49years.. amazing! That’s so refreshing to hear, there are so many horror stories out there aren’t there!
May I ask if you have a pump, or do you inject?

Thanks so much for your encouragement - Really means a lot! X

 

[Robinredbreast]

Hi and a big welcome @Vix85 this is my 30th year too. The road can be very bumpy at times with type 1, but we get there in the end and there are some lovely friendly, helpful and supportive members on here.
Take care x

 

[Vix85]

Hi and a big welcome @Vix85 this is my 30th year too. The road can be very bumpy at times with type 1, but we get there in the end and there are some lovely friendly, helpful and supportive members on here.
Take care x

Hi @Robinredbreast Thank you for the kind welcome!

We absolutely do

X

 

[Juicyj]

Hi @Vix85 and welcome to the forum

Sorry i'm not much use with knowledge on proliferative retinopathy, I have got background retinopathy which can come and go, maybe have a read of Dr Bernsteins Diabetes Solution, as he had a number of complications which he's successfully reversed and is type 1 ? Hopefully another member can offer more information

 

[Knikki]

Hello @Vix85 Welcome to the forum, afraid I don't know anything about pre proliferative retinopathy but if it was me I would certainly keep up with the appointments and then find a good opticians who can take photographs of the back of your eye, this, ideally should be done once a year to make sure things are OK.

I would ask at your next appointment to see if they recommend anyone. Up here where I live I get letters every year telling me I need to get checked, its free and I get an eye test as well.

Take care.

 

[Dark Horse]

'Pre-proliferative' is a term generally used to describe a level of retinopathy that is higher than 'background retinopathy' but has not yet progressed to 'proliferative retinopathy' that requires treatment.

This page gives more information and has suggested lifestyle changes which are likely to reduce the risk of progression:- http://diabeticretinopathy.org.uk/pre-proliferative.html