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Bad News after my 1st Retinal Screening - please help!

tigerlily72

tigerlily72

Well-Known Member
Messages
517
Location
South West, England UK
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Please help me as I'm feeling pretty stressed out with not only managing my diabetes diagnosis (recent) but also other associated and connected health issues.

I had my first retinal screening just over a week ago and was told I'd be likely to hear within about 4 weeks but if there was a problem I'd be notified sooner. Well, the letter arrived today informing me that I have "some background retinopathy". There was a leaflet enclosed which I've had a quick read through but can't get my head around it. I also have very high blood pressure - could this have caused the changes?

I found out fairly recently that my blood pressure has been high over a period of years but my previous GP who has retired ignored this. I'm seriously wondering whether to pursue this on grounds of bad practice with the surgery. My previous GP would take my blood pressure on routine visits and never really pass comment so I'd (wrongly) assumed it had been satisfactory and I'd not been offered treatment by him. It's only now due to the diabetes diagnosis that all of these health issues are "appearing". I personally feel I may have had diabetes longer than I actually have.

Sorry to go on but I can't cope with much more and I am also suffering with stress/depression that isn't directly linked to my diabetes.
 
I'm sending you a hug. I know there are others far more knowledgeable than me who can provide support re eyes and doctor, but I wanted you to know you aren't alone.
 
I also had a letter saying I had background retinopathy. My understanding is that they will test again in a year and no treatment is needed at this time. My letter does state it is important to manage my diabetes as well as possible to avoid the risk of developing more serious damage. Your GP should have been informed so you could speak to him/her. I've just accepted this and trying to keep tight control. I would be interested to hear from others who may have had the same letter and if they went on to develop problems or not.
 
Hello
Of course the best possible result from a diabetic eye exam is no abnormalities found.
If you have been alerted to the fact you have "background" retinopathy, it is scary, but you are fortunate they will take a closer interest in how your eyes progress, which is also exactly what you should do. I said this earlier today in another thread, Read, learn, become aware about your eyes strengths and weaknesses, take note of even the most simple changes.
Having retinal issues does not make you immune from say, corneal, nerve and eye surface issues. For such a tiny organ they are complex, so reporting to your Dr of any symptoms that occur gives the opportunity to be referred to the appropriate specialist and maintain optimal eye health.

Another name for background retinopathy is Non-proliferative diabetic retinopathy. It is the earliest stage of the disease and the Dr has probably noticed some minor changes or bulges called micro aneurysms, they may have already taken retinal photos, some places proceed to angiography ( injest some dye into your arm and take pics of your eyes)
You will be encouraged to tighten up blood sugar control, and the same with blood pressure.
It is not all doom and gloom, many progress no further than this. You can be one of those many :)
Sadly I was not, and am legally blind , had multiple surgeries, my retinas are completely full of laser. I have never had high blood pressure tho, but have had type 1 for over 40 years, so look at this as an opportunity to get all your ducks in a row.
Hope this helps
 
tigerlily72 said:
Please help me as I'm feeling pretty stressed out with not only managing my diabetes diagnosis (recent) but also other associated and connected health issues.

I had my first retinal screening just over a week ago and was told I'd be likely to hear within about 4 weeks but if there was a problem I'd be notified sooner. Well, the letter arrived today informing me that I have "some background retinopathy". There was a leaflet enclosed which I've had a quick read through but can't get my head around it. I also have very high blood pressure - could this have caused the changes?

I found out fairly recently that my blood pressure has been high over a period of years but my previous GP who has retired ignored this. I'm seriously wondering whether to pursue this on grounds of bad practice with the surgery. My previous GP would take my blood pressure on routine visits and never really pass comment so I'd (wrongly) assumed it had been satisfactory and I'd not been offered treatment by him. It's only now due to the diabetes diagnosis that all of these health issues are "appearing". I personally feel I may have had diabetes longer than I actually have.

Sorry to go on but I can't cope with much more and I am also suffering with stress/depression that isn't directly linked to my diabetes.
Click to expand...

Right now, it's important you don't focus on the negative things that happen to us. Getting into a flap or a tail-spin, isn't going to be helpful at all. I know it's always tempting to dwell on what might have been, but we can't change the past. What we can change is the future.

Moving on from here, I would suggest your best, most productive actions, now, would be to take your diabetes and shake it by the throat, and get it into as good a place as you possibly can. People, including medics, can speculate how long we may, or may not have been diabetic prior to diagnosis, but similarly we have forum members here who have factual evidence (by way of past blood test results) to suggest their onset was fairly quick.

A number of people, over the couple of years U have been reading this forum, have reported background retinopathy improving or apparently disappearing. Both of those things tend to be significantly influenced by glucose control.

I don't know if you carry any weight, but my personal experience was solely to concentrate on getting my finger prick blood test scores into a good range. As my blood scores improved, as did my blood pressure and my weight dropped, very steadily and easily.

Please do try to concentrate on the good stuff, because my experience of diabetes is that bloods, weight, BP and cholesterol all tend to improve when we cut the carbs and get to grips with the bloods.

Good luck with it all.
 
Hiitsme said:
I also had a letter saying I had background retinopathy. My understanding is that they will test again in a year and no treatment is needed at this time. My letter does state it is important to manage my diabetes as well as possible to avoid the risk of developing more serious damage. Your GP should have been informed so you could speak to him/her. I've just accepted this and trying to keep tight control. I would be interested to hear from others who may have had the same letter and if they went on to develop problems or not.
Click to expand...

Yes, my letter did say something very similar. I will be screened again in 12 months, should control my blood sugar, regularly monitor my blood pressure, attend regular diabetes checks etc.
 
Sucre Bleu said:
Hello
Of course the best possible result from a diabetic eye exam is no abnormalities found.
If you have been alerted to the fact you have "background" retinopathy, it is scary, but you are fortunate they will take a closer interest in how your eyes progress, which is also exactly what you should do. I said this earlier today in another thread, Read, learn, become aware about your eyes strengths and weaknesses, take note of even the most simple changes.
Having retinal issues does not make you immune from say, corneal, nerve and eye surface issues. For such a tiny organ they are complex, so reporting to your Dr of any symptoms that occur gives the opportunity to be referred to the appropriate specialist and maintain optimal eye health.

Another name for background retinopathy is Non-proliferative diabetic retinopathy. It is the earliest stage of the disease and the Dr has probably noticed some minor changes or bulges called micro aneurysms, they may have already taken retinal photos, some places proceed to angiography ( injest some dye into your arm and take pics of your eyes)
You will be encouraged to tighten up blood sugar control, and the same with blood pressure.
It is not all doom and gloom, many progress no further than this. You can be one of those many :)
Sadly I was not, and am legally blind , had multiple surgeries, my retinas are completely full of laser. I have never had high blood pressure tho, but have had type 1 for over 40 years, so look at this as an opportunity to get all your ducks in a row.
Hope this helps
Click to expand...

Thanks for your reply. I'm hoping it doesn't progress any further! I am a worrier and just want advice, and perhaps reassurance from those that truly understand how I may be feeling. My husband has had to go to work (he works shifts) and I know I won't sleep well. So, I guess this is kind of therapeutic and calming me down a bit!
 
tigerlily72 said:
Yes, my letter did say something very similar. I will be screened again in 12 months, should control my blood sugar, regularly monitor my blood pressure, attend regular diabetes checks etc.
Click to expand...

Try not to worry @tigerlily72 as they will monitor your eyes closely from here on, have a look at the following, it explains what background retinopathy is and gives advice on controlling your bg, bp and cholesterol levels:

http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html
 
AndBreathe said:
Right now, it's important you don't focus on the negative things that happen to us. Getting into a flap or a tail-spin, isn't going to be helpful at all. I know it's always tempting to dwell on what might have been, but we can't change the past. What we can change is the future.

Moving on from here, I would suggest your best, most productive actions, now, would be to take your diabetes and shake it by the throat, and get it into as good a place as you possibly can. People, including medics, can speculate how long we may, or may not have been diabetic prior to diagnosis, but similarly we have forum members here who have factual evidence (by way of past blood test results) to suggest their onset was fairly quick.

A number of people, over the couple of years U have been reading this forum, have reported background retinopathy improving or apparently disappearing. Both of those things tend to be significantly influenced by glucose control.

I don't know if you carry any weight, but my personal experience was solely to concentrate on getting my finger prick blood test scores into a good range. As my blood scores improved, as did my blood pressure and my weight dropped, very steadily and easily.

Please do try to concentrate on the good stuff, because my experience of diabetes is that bloods, weight, BP and cholesterol all tend to improve when we cut the carbs and get to grips with the bloods.

Good luck with it all.
Click to expand...

Yes, you're right I am getting in a flap. I am overweight but I have managed to lose a bit since initial diabetes diagnosis although my weight loss has slowed. BACK ON IT NOW WITH RENEWED DETERMINATION I think!

I have purchased my own monitor and strips so will do more finger pricking. I'm on medication for high blood pressure and have a review with my Dr next week to see how the BP meds are working. I will discuss this with her then.

I am just a bit of a worrier and suffer with anxiety and depression anyway. I think I may also ask her to review my antidepressant medication as I'm struggling at the moment as I have some personal issues affecting me as well as health issues. Hopefully this will get me through a difficult spell until my health issues "stabilise".
 
Hi tigerlily72

Please try not to worry too much. Most people with diabetes will get background retinopathy at some stage. It does not affect your eyesight and does not need treating. High blood pressure, poor glucose control and a poor lipid profile all increase the risk of diabetic retinopathy progressing so use your screening results to spur you into improving these. Get your GP practice to help you now and worry about whether to complain about previous treatment later.

Also, make sure that you attend your next screening. If you're unlucky enough to get any serious changes these can be detected at an early stage before your sight is affected, which is when treatment is most effective.

In summary, only worry enough to help you make the lifestyle changes you need to. I know it's difficult but anything else is overkill!
 
Dark Horse said:
Hi tigerlily72

Please try not to worry too much. Most people with diabetes will get background retinopathy at some stage. It does not affect your eyesight and does not need treating. High blood pressure, poor glucose control and a poor lipid profile all increase the risk of diabetic retinopathy progressing so use your screening results to spur you into improving these. Get your GP practice to help you now and worry about whether to complain about previous treatment later.

Also, make sure that you attend your next screening. If you're unlucky enough to get any serious changes these can be detected at an early stage before your sight is affected, which is when treatment is most effective.

In summary, only worry enough to help you make the lifestyle changes you need to. I know it's difficult but anything else is overkill!
Click to expand...

Thank You. I am attending all appointments with my GP and trying to get on the XPERT course in my area although I've been told there's a lot of people on a waiting list so it may be some time yet :mad:

I'm hoping I can get my blood pressure readings down and I'm on medication. I was expecting the test results to come back as ok but I guess my blood glucose hasn't been great (prior to diagnosis) and combined with high blood pressure this has already done some damage. I guess it serves as a warning for anyone who thinks they have symptoms that indicate diabetes to get them checked asap and avoid any further complications or the illness progressing further and getting control, rather than letting it control us!!
 
Tigerlily please don't panic. I had the same letter after my first screening in March. Then I visited my usual optician who said the damage must be very slight as it didn't show up on his examination. He said the diabetic screening is very thorough and picks up damage that is slight and unlikely to affect vision unless it gets much worse. He said that even if that were to happen, there are much better treatments available and it would be unlikely that our vision would deteriorate badly. He did stress the importance of the yearly check and trying to control glucose levels. I had been very worried but he was extremely reassuring. Hope this helps
 
MargJ said:
Tigerlily please don't panic. I had the same letter after my first screening in March. Then I visited my usual optician who said the damage must be very slight as it didn't show up on his examination. He said the diabetic screening is very thorough and picks up damage that is slight and unlikely to affect vision unless it gets much worse. He said that even if that were to happen, there are much better treatments available and it would be unlikely that our vision would deteriorate badly. He did stress the importance of the yearly check and trying to control glucose levels. I had been very worried but he was extremely reassuring. Hope this helps
Click to expand...

I actually had an eye test earlier in the year (May/June time) as I wear specs anyway and can't see without them! I go to Specsavers and they also conduct retinal screening although I believe it isn't the same as what we get at the hospital or GP surgery. It didn't throw any problems up at all. The only "issue" was that my right eye was weaker than my left but I am guessing that most people have one eye that is worse than the other?

I think I got a bit freaked out by it and I'm still a bit worried. But, thanks for the reassurance and like you say maybe it is only very minor damage to my eyes. It may help my case for perhaps pushing for a monitor and test strips on prescription as when I asked the DSN at my first appointment (prior to the retinal screening) she said that I couldn't due to funding . . . .
 
tigerlily72 said:
Please help me as I'm feeling pretty stressed out with not only managing my diabetes diagnosis (recent) but also other associated and connected health issues.

I had my first retinal screening just over a week ago and was told I'd be likely to hear within about 4 weeks but if there was a problem I'd be notified sooner. Well, the letter arrived today informing me that I have "some background retinopathy". There was a leaflet enclosed which I've had a quick read through but can't get my head around it. I also have very high blood pressure - could this have caused the changes?

I found out fairly recently that my blood pressure has been high over a period of years but my previous GP who has retired ignored this. I'm seriously wondering whether to pursue this on grounds of bad practice with the surgery. My previous GP would take my blood pressure on routine visits and never really pass comment so I'd (wrongly) assumed it had been satisfactory and I'd not been offered treatment by him. It's only now due to the diabetes diagnosis that all of these health issues are "appearing". I personally feel I may have had diabetes longer than I actually have.

Sorry to go on but I can't cope with much more and I am also suffering with stress/depression that isn't directly linked to my diabetes.
Click to expand...

Hi tigerlily72,

I have had background retinopathy on and off for the past 10 years or so. About 8 months ago I was told by my eye consultant at the Royal Free Hospital that it was quite bad in one eye and that there were early stages of it in the other eye.

I was told they would keep a close eye on things. I had a follow up appointment about 3 months ago and was told that the retinopathy in my bad eye had almost completely disappeared and the the other eye was clear.

My diabetes is pretty well managed but there have been times my eyes have been effected.

Try not to over worry. I think the eyes worry all of us so your not alone there.

I have been Type 1 for 34 years now and am yet to have any laser surgery on my eyes.

If you can be consistent over a period of time managing your sugar levels there is a good chance your eyes will improve.

You said that you were told you have some background retinopathy. I think the word here to concentrate on is "some" Try your best to keep your levels in range and things should improve.

Hoping this eases your worries slightly :)
 
kevinfitzgerald said:
Hi tigerlily72,

I have had background retinopathy on and off for the past 10 years or so. About 8 months ago I was told by my eye consultant at the Royal Free Hospital that it was quite bad in one eye and that there were early stages of it in the other eye.

I was told they would keep a close eye on things. I had a follow up appointment about 3 months ago and was told that the retinopathy in my bad eye had almost completely disappeared and the the other eye was clear.

My diabetes is pretty well managed but there have been times my eyes have been effected.

Try not to over worry. I think the eyes worry all of us so your not alone there.

I have been Type 1 for 34 years now and am yet to have any laser surgery on my eyes.

If you can be consistent over a period of time managing your sugar levels there is a good chance your eyes will improve.

You said that you were told you have some background retinopathy. I think the word here to concentrate on is "some" Try your best to keep your levels in range and things should improve.

Hoping this eases your worries slightly :)
Click to expand...

I didn't realise it could improve? I thought that it would only deteriorate? Ah, well that's more positive then! I am going to ask my Dr when I see her next what the degree of "some" is as I suppose it could be really minor.

Thanks for that :)
 
tigerlily72 said:
Thanks for your reply. I'm hoping it doesn't progress any further! I am a worrier and just want advice, and perhaps reassurance from those that truly understand how I may be feeling. My husband has had to go to work (he works shifts) and I know I won't sleep well. So, I guess this is kind of therapeutic and calming me down a bit!
Click to expand...

Keeping calm, and trying not to worry is the best thing to do. Just look at it as you are fortunate to have the opportunity to be closely monitored and take care of yourself. There are many people on this forum who never progressed past minor background changes, you can be one of them, heck, who knows, your eyes might improve. I have every confidence in your ability to take care of this
 
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