Type 1 21 and have pre-proliferative retinopathy

[samowen268]

Hi guys. I have posted here multiple times before, hoping everyone is staying safe!

I’m very concerned, I had a letter today that told me I now have Pre-Proliferative Retinopathy. I looked on the leaflet and it says it’s an advanced stage of retinopathy which has concerned me greatly.

I contacted the eye centre and they gave me very little reassurance, the lady just told me that my next appointment isn’t for 9 months, which must mean there haven’t been any “drastic” changes, however this sounds very drastic to me as I’m sure it was only maculopathy before? She said if it was urgent I would be seen again in 3 or 6 months, this has done very little to calm me down. It’s 2am and I’m very frightened, I’m 21 and can’t imagine a life without my sight. I was being seen every six months prior to now, I’m very confused.

I have tightened my control dramatically since 2017 when I first began to notice my sight deteriorating, however it doesn’t seem to be helping delay the problems.

I’m also not booked in for any laser, injections etc. should I press my GP for treatment now before it gets worse? I just feel as if I’m very alone on this issue, I’m finding it hard to get advice and just overall need a friendly conversation explaining what’s happening and why I’m not being referred for treatment yet.

Thank you ever so much in advance guys!

 

[Dark Horse]

Retinopathy goes through stages - background retinopathy, pre-proliferative (or non-proliferative) retinopathy and proliferative reinopathy. Generally, only proliferative retinopathy requires treatment with laser/injections (although it may occasionally be given if pre-proliferative retinopathy is so severe that it is thought that it will soon convert to proliferative retinopathy).

Sometimes poor control followed by tight control can temporarily worsen retinopathy although it is beneficial in the long term. There is a school of thought that the current state of retinopathy reflects diabetic control about 3 years ago - you may find that your pre-proliferative retinopathy does not progress and may even improve.

At the moment, the best plan is to keep good diabetic control (blood glucose, blood pressure and lipids) and make sure you attend your eye appointment when it comes. https://www.nhs.uk/conditions/diabetic-retinopathy/prevention/

Pre-proliferative retinopathy has quite a range and the fact that your appointment is not another 9 months suggest that you are near the bottom of that range. However, if you do experience any symptoms (floaters, flashes, patchy vision, blurred vision etc.) don't wait for your next appointment but seek help as soon as possible.

 

[NicoleC1971]

Agree with Dark Horse having gone through your situation albeit post pregnancy and 10 years older. Fear of sight loss is immense so I can understand your angst but look on it as a wake up call to get your control as good as you can. You are young and could stop the dammage increasing.
The reason for the seemingly long delay between eye appointments is that retinopathy develops slowly. Also there are treatments which you've doubtless researched.
In my case my laser treatment did not work that well but I think it is worth checking the success rates of injections and laser treatments or toa ask your diabetic specialist to point you in that direction. Get your GP involved to ask on your behalf given how hard it is to get a consultant's attention.
The next stage for me was a vitrectomy on both eyes. Not fun in terms of recovery process but it has saved my sight.
Yes it really is not fair that you are young and having to think about things like this but try and look at it as a challenge that could make you a lot healthier in all aspects because you're massively motivated to get your bgs down. If you have not already got a freestyle libre or other cgm this could be a good lever to do so assuming you are in the UK.
Good luck.

 

[samowen268]

Retinopathy goes through stages - background retinopathy, pre-proliferative (or non-proliferative) retinopathy and proliferative reinopathy. Generally, only proliferative retinopathy requires treatment with laser/injections (although it may occasionally be given if pre-proliferative retinopathy is so severe that it is thought that it will soon convert to proliferative retinopathy).

Sometimes poor control followed by tight control can temporarily worsen retinopathy although it is beneficial in the long term. There is a school of thought that the current state of retinopathy reflects diabetic control about 3 years ago - you may find that your pre-proliferative retinopathy does not progress and may even improve.

At the moment, the best plan is to keep good diabetic control (blood glucose, blood pressure and lipids) and make sure you attend your eye appointment when it comes. https://www.nhs.uk/conditions/diabetic-retinopathy/prevention/

Pre-proliferative retinopathy has quite a range and the fact that your appointment is not another 9 months suggest that you are near the bottom of that range. However, if you do experience any symptoms (floaters, flashes, patchy vision, blurred vision etc.) don't wait for your next appointment but seek help as soon as possible.

Thanks so much for this reply. Well the problem for me is that my eyesight is already poor and my vision in general is really snowy / cloudy. Whenever I mention this to the screening lady she tells me it’s very unusual, however no one else seems to think it’s an issue. I’m finding it really draining because everyone I speak to thinks I’m overreacting but my sight is really concerning me right now.

Three years ago my blood glucose control was appalling, however 2017 was also the year I started controlling my blood glucose levels much better so maybe things will get better. I really hope you’re right and I see some improvement however thus far it’s only gotten worse. My doctor surgery has been less than cooperative and I’ve still not been able to speak to a GP after waiting weeks.

Thanks again for your detailed response it’s very comforting to know I have informed people here to help me with these feelings of anxiety.

 

[Dark Horse]

Thanks so much for this reply. Well the problem for me is that my eyesight is already poor and my vision in general is really snowy / cloudy. Whenever I mention this to the screening lady she tells me it’s very unusual, however no one else seems to think it’s an issue. I’m finding it really draining because everyone I speak to thinks I’m overreacting but my sight is really concerning me right now.

Three years ago my blood glucose control was appalling, however 2017 was also the year I started controlling my blood glucose levels much better so maybe things will get better. I really hope you’re right and I see some improvement however thus far it’s only gotten worse. My doctor surgery has been less than cooperative and I’ve still not been able to speak to a GP after waiting weeks.

Thanks again for your detailed response it’s very comforting to know I have informed people here to help me with these feelings of anxiety.

Have you spoken to an optometrist about your vision? The screening programme only looks for diabetic retinopathy and it's important that you also see an optician/optometrist regularly as vision may also be affected by other causes