Retinopathy at a young age...

[MPFT1D]

Hi..

I'm 23 year old type 1 Diabetic, and a few years ago I was diagnosed with background/pre-proliferative retinopathy (I'm not entirely sure which, as getting a straight diagnosis from any of my eye doctors is an impossible feat and at one point I was told one by one doctor and another by a different one within a day of each other). I'm just wondering whether there are any other people who have been in the same situation who would have any advice? As I'm only in my early 20's it's a scary prospect and in general my eye doctor seems more eager to finish for the day than give me any sound advice/be of any assistance. So it would be a comfort to know of anyone who's been in the same situation and got through it and is still okay.

Thank you!

 

[noblehead]

Welcome @MPFT1D and sorry to hear about your retinopathy diagnosis.

The best thing you can do is to try and keep your bg, bp and cholesterol levels under control, it says all this and much more in the following website which has some great advice & information on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

btw, next time you have a ophthalmology appointment don't leave the room until your consultant has answered all your questions and concerns. Good luck.

 

[BeccyB]

Hi @MPFT1D , welcome to the forum

Have you been told you need laser treatment or anything? If you aren't being lasered I would say you only have background retinopathy.

The good news is that it is by no means certain that it will progress, I had full on proliferative retinopathy, needed a lot of laser treatment and injections yet it has now been halted as I've got my BS under control. You haven't mentioned how good your control is but this is definitely the key to keeping your eyes healthy now

 

[C0ylie03]

Hi..

I'm 23 year old type 1 Diabetic, and a few years ago I was diagnosed with background/pre-proliferative retinopathy (I'm not entirely sure which, as getting a straight diagnosis from any of my eye doctors is an impossible feat and at one point I was told one by one doctor and another by a different one within a day of each other). I'm just wondering whether there are any other people who have been in the same situation who would have any advice? As I'm only in my early 20's it's a scary prospect and in general my eye doctor seems more eager to finish for the day than give me any sound advice/be of any assistance. So it would be a comfort to know of anyone who's been in the same situation and got through it and is still okay.

Thank you!

Hi I was 36 when I started to have retinotheraphy and started getting laser treatment every month for over 4 years. I have now lost all my peripheral vision. I started using the noctura 400 mask to sleep in on a night. I have worn this for 18 months and never had laser since. Although you still need to keep your blood sugars accurate. I would highly recommend using this although it's not on the NHS and costs £1000 a year.

 

[Nicollecath]

Hi..

I'm 23 year old type 1 Diabetic, and a few years ago I was diagnosed with background/pre-proliferative retinopathy (I'm not entirely sure which, as getting a straight diagnosis from any of my eye doctors is an impossible feat and at one point I was told one by one doctor and another by a different one within a day of each other). I'm just wondering whether there are any other people who have been in the same situation who would have any advice? As I'm only in my early 20's it's a scary prospect and in general my eye doctor seems more eager to finish for the day than give me any sound advice/be of any assistance. So it would be a comfort to know of anyone who's been in the same situation and got through it and is still okay.

Thank you!

Hey there.
I'm a 26 year old T1 diabetic of 19 years. Now I'm unsure about yourself, I was diagnosed at age 7 and had steady control until I was around 11 and started to realise omitting my insulin made me lose weight.
Between the ages of 11-25, I really did not keep a tight control on my diabetes and have caused myself a LOT of issues as a consequence. Hair loss, nerve damage, kidney dysfunction, and the worst of them all... retinopathy.
Now I don't want to scare you saying all of this as I don't know your situation, but this is the reality of what happens if you don't control it, I am a (luckily) living example of this.
I had a vitreous haemorrhage last year whilst working abroad and my vision has declined since then. You are lucky to only have background retinopathy, as I discovered it when it was too late.
There are however, great treatments available on the NHS if it does progress. I have had a lot of laser in both eyes, a vitrectomy, and I'm about to start anti VGEF injections for the maculopathy I also have.
The best and only thing you can do is control your blood sugars to prevent it progressing. End of.

As for this nocturna company just PLEASE consult your ophthalmologist first. I researched into them as I noticed they keeping popping up on these threads (as new members on that day. I don't know if some sly marketing is going on here) but because the mask oxengenates the eyes, if they have been deprived of oxygen for a long time (which is why new abnormal blood vessels grow) it can actually speed up the progression of retonopathy if you use it. As for others it may be beneficial, but people must be careful with these things.

Sorry my post isn't all positive feedback, but I'd rather speak out if anyone is reading this going through similar problems with their control I need to reinforce how serious this is. I would give anything for my normal vision back.

 

[Jay&carters mum]

Hi..

I'm 23 year old type 1 Diabetic, and a few years ago I was diagnosed with background/pre-proliferative retinopathy (I'm not entirely sure which, as getting a straight diagnosis from any of my eye doctors is an impossible feat and at one point I was told one by one doctor and another by a different one within a day of each other). I'm just wondering whether there are any other people who have been in the same situation who would have any advice? As I'm only in my early 20's it's a scary prospect and in general my eye doctor seems more eager to finish for the day than give me any sound advice/be of any assistance. So it would be a comfort to know of anyone who's been in the same situation and got through it and is still okay.

Thank you!

Hi I was 24 when I was told I had retinopathy and was pregnant with my now 9 year old in now 24 weeks with my second child and im fine I had laser treatment with in a week of finding out with my first and I've been fine ever since altho I was told to try an keep my blood pressed down as this doesn't help Ive been diabetic since I was 4 years old!! I'm now 33, don't stress about it to much we all go through complications even if our diabetes is well controlled xx

Mod edit to remove details of a product unrelated to the thread topic.

 

[MPFT1D]

Hi @MPFT1D , welcome to the forum

Have you been told you need laser treatment or anything? If you aren't being lasered I would say you only have background retinopathy.

The good news is that it is by no means certain that it will progress, I had full on proliferative retinopathy, needed a lot of laser treatment and injections yet it has now been halted as I've got my BS under control. You haven't mentioned how good your control is but this is definitely the key to keeping your eyes healthy now

No I haven't been told I need any sort of treatment, just that I have to come see them every 6 months now instead of once a year.

When I was young my control was terrible, in the last 3-4 years I have brought my HBA1c right down to 6.something and just have the odd hypo now and then (the very occasional high after an occasion night out).

Thank you for the reassurance as I was having a panicky moment lol, I'm glad to hear you've members to keep yours in control and stop it in its tracks!!

 

[MPFT1D]

No I haven't been told I need any sort of treatment, just that I have to come see them every 6 months now instead of once a year.

When I was young my control was terrible, in the last 3-4 years I have brought my HBA1c right down to 6.something and just have the odd hypo now and then (the very occasional high after an occasion night out).

Thank you for the reassurance as I was having a panicky moment lol, I'm glad to hear you've members to keep yours in control and stop it in its tracks!!

Managed **

 

[C0ylie03]

Hey there.
I'm a 26 year old T1 diabetic of 19 years. Now I'm unsure about yourself, I was diagnosed at age 7 and had steady control until I was around 11 and started to realise omitting my insulin made me lose weight.
Between the ages of 11-25, I really did not keep a tight control on my diabetes and have caused myself a LOT of issues as a consequence. Hair loss, nerve damage, kidney dysfunction, and the worst of them all... retinopathy.
Now I don't want to scare you saying all of this as I don't know your situation, but this is the reality of what happens if you don't control it, I am a (luckily) living example of this.
I had a vitreous haemorrhage last year whilst working abroad and my vision has declined since then. You are lucky to only have background retinopathy, as I discovered it when it was too late.
There are however, great treatments available on the NHS if it does progress. I have had a lot of laser in both eyes, a vitrectomy, and I'm about to start anti VGEF injections for the maculopathy I also have.
The best and only thing you can do is control your blood sugars to prevent it progressing. End of.

As for this nocturna company just PLEASE consult your ophthalmologist first. I researched into them as I noticed they keeping popping up on these threads (as new members on that day. I don't know if some sly marketing is going on here) but because the mask oxengenates the eyes, if they have been deprived of oxygen for a long time (which is why new abnormal blood vessels grow) it can actually speed up the progression of retonopathy if you use it. As for others it may be beneficial, but people must be careful with these things.

Sorry my post isn't all positive feedback, but I'd rather speak out if anyone is reading this going through similar problems with their control I need to reinforce how serious this is. I would give anything for my normal vision back.

The reason why diabetics have bleeds is because the eyes don't produce enough oxygen when closed and try to grow new black d vessels which then burst causing retinotheraphy and maybe blindness. The mask tricks your eyes into thinking it's daytime producing oxygen. In my experience it has worked for me and slightly stopped my concerns of going blind before I'm 50

 

[MPFT1D]

Hi I was 24 when I was told I had retinopathy and was pregnant with my now 9 year old in now 24 weeks with my second child and im fine I had laser treatment with in a week of finding out with my first and I've been fine ever since altho I was told to try an keep my blood pressed down as this doesn't help Ive been diabetic since I was 4 years old!! I'm now 33, don't stress about it to much we all go through complications even if our diabetes is well controlled xx

Mod edit to remove details of a product unrelated to the thread topic.

Hi, it's good to hear yours has remained stable since! Thank you for the reassurance, my blood sugars are very stable for a while now, I do have the odd blip but nothing too crazy/not good!

 

[nessals946]

My eye story is horrendous,i wont freak you out with it because you obviously know that keeping good control of your blood sugars is the key.I was diagnosed when i was 6 and my eye problems started when i was 21.Ive had diabetes for 40 years but still feel like an amateur at times.