Diabetic retinopathy

Maidz

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Hi All

I had my eyes screened about a month ago and I received a letter the other day with a further appointment. It doesnt say why, just that I would benefit from a further assessment. :( obviously im thinking the worst. Does anyone know anything about this subject? What happens if the nerves behind my eyes are damaged? Can it be reversed? Will I go blind? Help.

Also the mean doctors havent given me a pump yet. They have changed my background insulin to Levemir instead of Lantus. I dont like it.
 

himtoo

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why can't everyone get on........
Hi maidz
no need to panic yet !
normally when they ask to see you it is very routine.
I get the screening every year but have been also going to opthalmology clinic at hospital for about 23 years and I can still see fine and drive.

the reason they see you is to assess with the aid of drops that make your pupils get big -- the backs of your eyes to see if there are any small areas of bleeding. with continued good control these can stay stable for many many years.

I have started using an alternate non invasive therapy not yet approved by NICE ( so it cost me privately ) and early results have been very positive.

link here http://noctura.com/
 
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Mike d

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Hi maidz
no need to panic yet !
normally when they ask to see you it is very routine.
I get the screening every year but have been also going to opthalmology clinic at hospital for about 23 years and I can still see fine and drive.

the reason they see you is to assess with the aid of drops that make your pupils get big -- the backs of your eyes to see if there are any small areas of bleeding. with continued good control these can stay stable for many many years.

I have started using an alternate non invasive therapy not yet approved by NICE ( so it cost me privately ) and early results have been very positive.

link here http://noctura.com/

Good advice.
 

Mike d

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@Maidz

Just relax .... I'm sure you'll be fine .... and take care

Mike
 
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JTL

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I had my yearly in I think January and a couple of weeks later received a letter saying there were some diabetic changes to my right eye but nothing to concern myself about but see my GP for more information and they'd see me in a years time.
Saw the GP and she said it's very minor but a warning .... get the blood sugars under control and the blood pressure down.
She then added that I have done exactly that and she can't see me improving my BS control any more just to make sure I keep at it and yes I've brought my blood pressure down but that still has room for improvement nothing to worry about.
I can see feel no difference but ...a lot of unlit roads around here and my night time vision is slightly different.
If there are street lights other car lights even house lights all is well but on totally dark roads with just my headlights there is a difference ... it is somehow darker and I'm compelled to be that bit more cautious.
 
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Charles Robin

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Hi Maidz, I'm in exactly the same position as you. I got the letter through saying an appointment had been booked for me at the ophthalmology clinic. This happened a week and a half after my retinal scan. The important thing is, don't panic!

To be perfectly honest, I disregarded that rule and had a temporary breakdown. Then I calmed down, assessed the situation and rang the hospital. They couldn't give out any details over the phone, but a nurse there did run me through some possible scenarios. The first one was that the retinal screening wasn't clear enough, and the team doing the assessment wanted to get another photograph. The second one was that there was something there that needed some further looking into. I do have the early stages of retinopathy, so it's possible that it has progressed just enough to need further monitoring.

In my case, I think the latter is more likely. When the technician did my scan, I did get to look at the photograph. It looked like a good shot, and he was happy with the quality of the photo. However, I will also mention that from obsessive research a couple of years back, I know what retinopathy looks like in the scan. I didn't see anything horrifying on my picture. Obviously the people doing the assessment can use more in depth tools to check, but there definitely weren't any massive scars running the length of my retina.

After I got the panic out of my system, I have not felt the need to have a breakdown, and I will explain why. Retinal screening exists to catch problems at the very earliest stage. It is now incredibly rare for a diabetic to actually go blind. Generally speaking, doctors can preserve what sight a patient has at the time of treatment. So if you can see fine, then great! The chances are that if a problem has happened, it has been caught early enough that you will not need to worry about losing your vision.

Now, an important BUT springs in here. A diabetic who gets the early signs of problems, and then gets good diabetic control has little to fear. A poorly controlled diabetic who gets the early signs, has some treatment and then says 'well that's that' and carries on as before is asking for trouble. From what you have said, it seems like you are taking steps to make your diabetes control the best it can be. My advice is to do what I have done. Read, research and find ways to get blood sugars stable. It's not easy. My goodness do I know that. But it is very much possible. My advice is to go to YouTube and search for doctor troy stapleton. He is an Australian doctor who has type 1 diabetes, and talks about his ways of having excellent control. Jenny Ruhl's book 'diabetes 101' is also well worth reading. A lot of it is aimed at type 2s, but there's plenty of great information for us type 1s as well.

Getting back to the letter, the only thing we can do is wait and see. It could be as simple as a change of protocol, meaning a more in depth test is done every few years. If there is some treatment needed, then it's great that we are being offered what we need at the very earliest opportunity. Best of luck, and I hope in a few weeks we can both move on from a very routine appointment.
 
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gemma6549

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Hi

I had this a couple of years ago, background retinopathy and slight maculopathy in one eye. I have been seen at the hospital on 3 occasions and with maintained good control this has now reversed and rectified itself.

Please don't worry yourself too much, I did and everything turned out to be fine.
 
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Charles Robin

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Just a quick update, apologies if it seems I'm hijacking the thread. My letter referring to my screening arrived this afternoon. It said 'The tests detected changes in your eyes which may need further assessment, so we are referring you to the hospital eye clinic to see a specialist. The hospital will send you an appointment. It is important that you attend this appointment in order to protect your eyesight.'
So the chances are you will get a letter explaining things further if you have not already. Again, the main thing is not to panic! (I won't if you won't :)). It may simply be a change in NHS standard procedure, where anyone with any changes at all is referred as a precaution.
My message is the same as before: go to the appointment, keep your sugars as good as you can, and try to stay positive. Also, it's perfectly natural to worry with news like this. I firmly believe that this is something requiring monitoring rather than a catastrophe of unbridled proportions. However, it is a really, really good idea to speak to someone, just to release your worries. The only way I go through life as a happy and positive person is to share my problems with my wife (and help her with hers too!). Being able to talk to her yesterday was such a help. See if you can have a chat with anyone close to you, and it really can make things much easier to deal with.
And as I said before, it's extremely rare for retinopathy to lead to full on blindness. Loads and loads of forum members have stabilised their retinopathy, and some have even seen it reverse in the early stages. Once again, best of luck and keep posting :)
 
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LucySW

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And it seems from so many people's experience that retinopathy, once it begins to develop, can be partially or even more than partially reversed with good blood sugars. So go for the good blood sugars!!
 
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JTL

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Yeah from my understanding it isn't a big worry issue.
 

Gaz-M

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I have retinopathy and have an eye check every 6 month, this was done at Sunderland eye infermary but got changed to the drop in centre close by, my eye have not changed that much in 12 year so no need to panic, the blood vessels can be a problem when they make new ones which is corrected by laser treatment if needed.
 
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kevinfitzgerald

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@Maidz

Hello,

I've been Type 1 for 33 years and even now when the consultant says there's a little eye damage it really worries me but I've never had any laser surgery and my eyes have remained stable.

On many occasions I have been told to come back in 6 months and when I have returned I've been told that the eyes have improved or haven't got any worse.

I have a little retinopothy and macular degeneration in one eye but the one good thing (if that's possible!) about this illness of ours is that many of it's complications can be reversed or kept stable with improved BS control.

There are many chronic conditions out there where the sufferers are not as lucky.

Don't worry, we all go through this, it really is part of the norm for us !
 
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buckmr2

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Diabetic Type 1 since 1972 with Diabetic Retinopathy in both eyes for decades.
Don't worry about it.
Modern treatments are second to none whether its laser to zap the microscopic blood vessels or Lucentis (found to be effective in us diabetics too to reduce swelling to normal levels) after successful being used for elderly patients with Macula Oedema) and recent new treatments which have come to the fore.
 

Charles Robin

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Hi Maidz, have you had your eye appointment yet? I had mine today, and have just written a blog post about what was said. Long story short, it was largely good news :)
 

Maidz

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I went yesterday and mine wasn't so good really :(
I don't really no much detail but he said to me there is leakage at the back of my eyes from the blood vessels. He said I will need a scan to see if there is any inflammation. He then briefly explained that if it's quite bad then I may need laser. x
 

Maidz

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Once the damage has been done is there anyway to reverse it or will I just need treatment to stop it gettin worse x