Rapid deteroration in eyes and first hospital appointment

[Dartmoormaid]

Hello

People here were so helpful last time, for which I was grateful, when I asked if it's possible to be eye screened without the use of drops as now extremely sensitive to light.

Following on from the screening, this was posssible and have pre poliferative retinopathy I go for the first time to the eye hospital tomorrow to see the consultant and learn more.

I've asked and they've noted that I would like not to have the drops and have to flag this up with the nurse. In anyone's experience, is this a possiblilty? Really very worried the drops will make the condition even worse.

The reason for the now rapid deterioration is due to an equally rapid lowering of HbA1c from very high down to 40. ( September test) I've since researched and found this happens I read that whilst eyes can continue to worsen for some time in the short term, when blood sugars are stable for a period of time, healing can take place and some have experienced a reversal of the retinopathy. Does anyone have experience or knowledge/links for this please?

Generally anxiety levels are now very high regarding the speed of deterioration in my eyes..

I'd be grateful for any information and support.on the above and any tips for when I'm with the consultant please.

Thank you

Sue

 

[Dartmoormaid]

Apologies....think I asked too many questions in one thread.

 

[Dartmoormaid]

Hello

Would anyone know what to expect please?

I had a screening without eyedrops' Is it possible for this to happen with consultant's appointment? They've put this in my notes as conceened drops will cause further damage to already very light sensitive eyes From the screening, they say I've pre proliferative retinopathy.

thanks

Sue

 

[Jaylee]

Hi Sue,

I've always had the drops...

After years of "getting away with the scans," & getting the all clear. i did get diagnosed with macula oedema after sorting my management out?
Felt like a slap in the face. However the treatment to date has been promisingly successful.

I will tag in @Dark Horse who i believe knows the way around the eyes..

 

[Jaylee]

Apologies....think I asked too many questions in one thread.

Your questions are fine formatted where they are...

 

[Dartmoormaid]

Your questions are fine formatted where they are...

Thank you...wasn't sure

 

[Dartmoormaid]

Hi Sue,

I've always had the drops...

After years of "getting away with the scans," & getting the all clear. i did get diagnosed with macula oedema after sorting my management out?
Felt like a slap in the face. However the treatment to date has been promisingly successful.

I will tag in @Dark Horse who i believe knows the way around the eyes..

Thanks Jaylee. that's strange how that happens and good to hear treatment's promising for you

 

[Jaylee]

Thanks Jaylee. that's strange how that happens and good to hear treatment's promising for you

I've heard it mentioned elsewhere that the "short sharp shock aproach" to BG managment can destabilise the eyes?

But that was only after I was diagnosed.. Let's just say I went through a period of using "accessibility" on my phone & pinch & zoom close up? Not any more. But I am still monitored..

It's worth asking your ophthalmologist regarding the drops. Or at least the nurse that will probably put them in after a simple eye chart test that normally precedes these eye scan affairs?

 

[Dartmoormaid]

I've heard it mentioned elsewhere that the "short sharp shock aproach" to BG managment can destabilise the eyes?

But that was only after I was diagnosed.. Let's just say I went through a period of using "accessibility" on my phone & pinch & zoom close up? Not any more. But I am still monitored..

It's worth asking your ophthalmologist regarding the drops. Or at least the nurse that will probably put them in after a simple eye chart test that normally precedes these eye scan affairs?

That's really helpful...thank you very much.

Yes, I needed to make changes as was poorly with other things and it's just continued resulting in this rapid BS decrease etc....GP amazed however as you say the change has affected my eyes....did a bit of reseach and found some papers on it.

 

[Dark Horse]

Drops are used to dilate your eyes. This gives the examiner the best chance of seeing any sight-threatening changes. Although the screening result is 'pre-proliferative' retonopathy, the screening images do not cover the whole of the retina. You will have been referred to Ophthalmology so that the whole of your retina can be examined by slit lamp in case there is proliferative retinopathy in the areas which were not photographed at screening. These areas are very difficult to see without dilation so dilating drops are recommended, wherever possible. Talk to the ophthalmologist who examines you and see what they suggest - make sure you mention your light sensitivity.

Re increase on diabetic retinopathy after sudden, large improvement in diabetic control - although this can cause some worsening in the short term, it results in improvement in the long term which is good. You already have an ophthalmology appointment so you are in the best place to detect and address any changes in the short term.

Thanks to @Jaylee for the tag.

 

[NicoleC1971]

Hello

People here were so helpful last time, for which I was grateful, when I asked if it's possible to be eye screened without the use of drops as now extremely sensitive to light.

Following on from the screening, this was posssible and have pre poliferative retinopathy I go for the first time to the eye hospital tomorrow to see the consultant and learn more.

I've asked and they've noted that I would like not to have the drops and have to flag this up with the nurse. In anyone's experience, is this a possiblilty? Really very worried the drops will make the condition even worse.

The reason for the now rapid deterioration is due to an equally rapid lowering of HbA1c from very high down to 40. ( September test) I've since researched and found this happens I read that whilst eyes can continue to worsen for some time in the short term, when blood sugars are stable for a period of time, healing can take place and some have experienced a reversal of the retinopathy. Does anyone have experience or knowledge/links for this please?

Generally anxiety levels are now very high regarding the speed of deterioration in my eyes..

I'd be grateful for any information and support.on the above and any tips for when I'm with the consultant please.

Thank you

Sue

Sue
I 've had experience of this from 2003=4 if that helps.
I was pregnant with great blood sugars then things went badly and sugars went up again about 6-9 months afterwards and in spite of laser treatment my background retinopathy went to bleeding in both eyes. Note that I had gone from pregnancy to higher bgs in rollercoaster fashion and this is not your direction of travel though I had found evidence that this rollercoaster pattern might not have helped. Pregnancy is a time for growth and doubtless high sugars and high insulin contributed to the proliferation of those faulty new vessels.
I went on to have a vitrectomy in both eyes which at the time saved my sight but involved a difficult recovery. Was seen by Mr Eric Ezra at Moorfields. At the time the success of this operation was rated at 70%.
So it is a scary time for you and I hope your eyes settle down. You should expect frequent reviews to check if the treatment is calming things down and try not to panic as I was told I was unlucky and unusual to have this perfect storm that lead to my sight problems (pregnancy, background retinopathy and crazy new mum hormones/blood sugars!).

 

[Dartmoormaid]

Drops are used to dilate your eyes. This gives the examiner the best chance of seeing any sight-threatening changes. Although the screening result is 'pre-proliferative' retonopathy, the screening images do not cover the whole of the retina. You will have been referred to Ophthalmology so that the whole of your retina can be examined by slit lamp in case there is proliferative retinopathy in the areas which were not photographed at screening. These areas are very difficult to see without dilation so dilating drops are recommended, wherever possible. Talk to the ophthalmologist who examines you and see what they suggest - make sure you mention your light sensitivity.

Re increase on diabetic retinopathy after sudden, large improvement in diabetic control - although this can cause some worsening in the short term, it results in improvement in the long term which is good. You already have an ophthalmology appointment so you are in the best place to detect and address any changes in the short term.

Thanks to @Jaylee for the tag.

Thank you very much...this is very helpful. I guess I'm concerned the drops might exacerbate/cause further damage. Thinking about it,at the screening, the gentleman mentioned there's a weaker strength. I'll express my concerns. I'm grateful to you.

 

[Hopeful34]

My eyes are sensitive to light too. I always ask the nurse just to put one drop in each eye, as that is all I need for the Consultant to see everything he needs to. Usually that's accepted, but if they insist it needs more, I refuse and say I take full responsibility if there's a problem. That's always been fine, both with the nurse and the Consultant.

 

[Dartmoormaid]

Thank you very much...that's very helpful to know. With best wishes.

 

[sgm14]

Hello

I read that whilst eyes can continue to worsen for some time in the short term, when blood sugars are stable for a period of time, healing can take place and some have experienced a reversal of the retinopathy. Does anyone have experience or knowledge/links for this please?

Have you been explicitly told you have retinopathy or is this just a test to see if you have it? As I understand it, retinopathy is different and more serious than vision issues which were caused by high blood sugars.

When I was first diagnosed my eyesight got very bad, and I was told that my eyesight would probably return to normal, (which it did) but wasn't told that it would get worse first, before it would get better. (So yes I was worried for a few weeks).

Not an expert, but if I understand what I was told afterwards, what happens is that sugar molecules builds up inside your eye and can then attach to the lens. As your blood sugar starts falling, these molecules detach from the lens and float in the eye fluid for a while and it is the presence of them in the eye fluid that causes the vision issues. After a while they disappear from your eye fluid and your eyesight hopefully goes back to normal.

Of course, the issue is that the large sugar molecules can cause damage to the tiny blood vessels in your eye and this is retinopathy.

See also https://www.healthline.com/health/diabetes/blurry-vision

 

[Dark Horse]

Have you been explicitly told you have retinopathy or is this just a test to see if you have it?

The OP said that the result of the last screening was 'pre-proliferative retinopathy'.

 

[Dartmoormaid]

Have you been explicitly told you have retinopathy or is this just a test to see if you have it? As I understand it, retinopathy is different and more serious than vision issues which were caused by high blood sugars.

When I was first diagnosed my eyesight got very bad, and I was told that my eyesight would probably return to normal, (which it did) but wasn't told that it would get worse first, before it would get better. (So yes I was worried for a few weeks).

Not an expert, but if I understand what I was told afterwards, what happens is that sugar molecules builds up inside your eye and can then attach to the lens. As your blood sugar starts falling, these molecules detach from the lens and float in the eye fluid for a while and it is the presence of them in the eye fluid that causes the vision issues. After a while they disappear from your eye fluid and your eyesight hopefully goes back to normal.

Of course, the issue is that the large sugar molecules can cause damage to the tiny blood vessels in your eye and this is retinopathy.

See also https://www.healthline.com/health/diabetes/blurry-vision

Thank you very much for taking the time to respond and for the helpful information. My initial screening indicated pre proliferative retinopahty and just had a second screening...now waiting to hear the diagnosis. I will have another Hba1c in Novemeber so will have some indication of approximatley how long blood sugars have been stable...it will have been relatively short time. All the very best and good to hear eyesight improved.

Have you been explicitly told you have retinopathy or is this just a test to see if you have it? As I understand it, retinopathy is different and more serious than vision issues which were caused by high blood sugars.

When I was first diagnosed my eyesight got very bad, and I was told that my eyesight would probably return to normal, (which it did) but wasn't told that it would get worse first, before it would get better. (So yes I was worried for a few weeks).

Not an expert, but if I understand what I was told afterwards, what happens is that sugar molecules builds up inside your eye and can then attach to the lens. As your blood sugar starts falling, these molecules detach from the lens and float in the eye fluid for a while and it is the presence of them in the eye fluid that causes the vision issues. After a while they disappear from your eye fluid and your eyesight hopefully goes back to normal.

Of course, the issue is that the large sugar molecules can cause damage to the tiny blood vessels in your eye and this is retinopathy.

See also https://www.healthline.com/health/diabetes/blurry-vision

 

[Dartmoormaid]

Sue
I 've had experience of this from 2003=4 if that helps.
I was pregnant with great blood sugars then things went badly and sugars went up again about 6-9 months afterwards and in spite of laser treatment my background retinopathy went to bleeding in both eyes. Note that I had gone from pregnancy to higher bgs in rollercoaster fashion and this is not your direction of travel though I had found evidence that this rollercoaster pattern might not have helped. Pregnancy is a time for growth and doubtless high sugars and high insulin contributed to the proliferation of those faulty new vessels.
I went on to have a vitrectomy in both eyes which at the time saved my sight but involved a difficult recovery. Was seen by Mr Eric Ezra at Moorfields. At the time the success of this operation was rated at 70%.
So it is a scary time for you and I hope your eyes settle down. You should expect frequent reviews to check if the treatment is calming things down and try not to panic as I was told I was unlucky and unusual to have this perfect storm that lead to my sight problems (pregnancy, background retinopathy and crazy new mum hormones/blood sugars!).

Thank you Nicole for sharing your experience and so sorry to hear you had such a difficult recovery. With warm wishes and hope all is as well as possible for you now.

 

[Dartmoormaid]

Hello.
I'd hoped to post with an update from my first hospital visit on 28th October however as yet., no news of the outcome.

Just to say that in my appointment letter it said I'd be seeing the consultant however the nurse explained that they weren't doing that and that I'd have a couple of scans from a non medical technician who couldn't answer any questions.
I've no idea what the scans were for...in my anxiety I forgot to ask! For one machine I looked into a hazt red light with a green cross in the middle and had to open my eyes very wide and the second machine follow a circle and then there was a flash.

I said that having light sensitive eyes I was concerned about the drops and asked asked if they could screen without and they happily did....so was pleased I flagged that up and not to have had them automatically administerd. I'm thankful to the responses here that gave me the information/comfidence to do this.

I was disappointed not to see the consultant however appreciate it's difficult times for them. I'd questions and remember that the last time I went three years ago, there were more detailed tests/camera etc and thy'd requested details of symptoms as they did this time however, not noted.

I think that's it. if anyone has any information regarding the two scans etc and their experience, i'd be very grateful to learn some more.

Thank you.