should I be panicking over my retinopathy result?

[dragonfly66]

Hi Everyone, please can anyone tell me if I should be worrying over my retinopathy result. I came back from holiday yesterday to a letter saying my retinopathy showed R1 changes and that the Diabetic team should be notified and that I would be sent another appointment when due and that it does not need treatment at the moment. That was it, just one bit of paper, no other information. I tried ringing the department but only got a recording saying office closed for updates. Rang GP to speak to my diabetic nurse but she is on holiday! I am really panicking over this, does it mean I will go blind? I was diagnosed just over two years ago at HbA1c 6.9, so not excessively high and have been diet controlled since (with this forums help, thank you everyone) and my last two HbA1c results were 5.8. Plus have lost a stone in weight. This is why I am so worried as thought I was well controlled and now get told this. Does it mean that no matter what I do it will just get worse? Is there anyway of reversing it? Sorry to go on but this has really worried me, any advice would be very welcome, so glad this site is here as feel no where else to turn.

 

[jack412]

first of all you're fine and doesn't need anything done, just your annual check up
statin is one drug and the one I take...there are a couple of specific ones for eyes, but you may not need them or be prescribed, talk to your Dr

http://www.opticianonline.net/diabetic-retinopathy-screening-5/

• Level 0, no retinopathy (R0). This would require routine diabetes care and continued annual screening

• Level 1, background (R1). This would include the appearance of microaneurysms, intra-retinal haemorrhages and exudates (with no evidence of maculopathy as defined below). This would again require routine diabetes care and continued annual screening

• Level 2, pre-proliferative (R2). This would include the presence of venous beading, loops or duplication, intra-retinal microvascular abnormalities (IRMA), multiple haemorrhages, and cotton-wool spots. A minimum outcome would be for 70 per cent to be seen by an ophthalmologist in under 13 weeks, an achievable target being 95 per cent to be seen in this time

• Level 3, proliferative (R3). This would include new vessels either on the disc or elsewhere, pre-retinal haemorrhage and pre-retinal fibrosis. Rubeosis iridis falls into this category. As a minimum, 70 per cent should be seen within one week, an achievable target should be 95 per cent

• Maculopathy (M1). Evidence of exudates, retinal thickening and microaneurysms or haemorrhages (if associated with a best acuity of 6/12 or less) within one disc diameter of the fovea. A minimum outcome would be for 70 per cent to be seen by an ophthalmologist in less than 13 weeks, an achievable target being 95 per cent to be seen in this time

• Urgent referral (same day) would be recommended for any sudden loss of vision (for example where a pre-retinal haemorrhage is obscuring vision) or an active retinal detachment. Presumably, secondary glaucoma related to angle blockage with rubeosis might also warrant such management

 

[phoenix]

You don't need to panic. As Jack says R1 is background retinopathy . That means that some of the very tiny vessels in your eyes may have become blocked (microaneurysm) some may have bled causing little haemorrhages or leaked fluids causing deposits (exudates). These won't be in the macula ie the area of central vision.

Many people report developing background retinopathy even with good control. In the fairly recently diagnosed it may be because of damage done before diagnosis.
Some also say that they later have retinopathy photos that show if has cleared
I'm not sure about that one and think that may depend on how good the photos. I was diagnosed with background retionopathy some7- 8 years ago That was within 2 years of diagnosis . At that time I had an HbA1c of 4.9 . Since then I have been having both the normal photos and an examination with dye used. I don't live in the UK . Sometimes the photos seem clear but the dye still shows some tiny haemorrhages and aneurisms present. The point though is that they are very tiny, and it remains stable.
If you continue to keep good control of your blood glucose including importantly blood pressure and most also say cholesterol . Then all they need to do is to monitor it. Smoking does increase the risk of it getting worse.
There are more suggestions as how to help stop background retinopathy getting worse here (scroll down to Remember the 'targets' for good control) The underlined words in the article are links to more detail or evidence for their suggestions.http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html

 

[desidiabulum]

Sometimes background retinopathy is so background that specialists can't agree whether they can see it (I once got contradictory reports from the diabetes clinic and the eye screening programme on the same results -- one congratulating me on the all-clear!). Many people on this forum have found that it goes away with tighter control -- mine fluctuates, appearing and disappearing. Phoenix is exactly right, though, that the hidden factor is how much damage was done before diagnosis -- I think this is true of so many diabetes complications -- some of this is simply out of our control, and it is best to focus on what we can do The best thing that you can do is to stay calm and keep up the good control of BGs, which is where you can affect things -- you are doing everything right. Good luck

 

[Daphne917]

I had my eyes tested in August and was told by the person who did it that there was nothing to worry about but the letter would probably tell me there had been minor changes. Perhaps it's a standard letter!

 

[nikkid]

My DSN warned me about "background retinopathy" as I am starting on a pump soon and will therefore hopefully gain more tight control on my glucose levels. She said that if you go from being less controlled to much more tightly controlled in a short space of time then TEMPORARY changes can be seen.

 

[spendercat]

Don't panic.
My background retinopathy cleared up after a year with controlled BGs, and hasn't come back.
Even if it gets worse, it is treatable. My brother had laser treatment for his that fixed it.
So do not panic, really.

 

[Caesar]

Perfectly agree with @spendercat ... do not panic! It can clear up naturally through time or, less known than laser but non-invasive, there is also a treatment out there called Noctura400 by PolyPhotonix. It has been giving fantastic results to diabetic people who suffer from retinopathy even at advanced stages, when macular oedema takes place (http://www.diabetes.co.uk/forum/threads/green-light-for-retinopathy-treatment.67768/page-2).