Retinopathy questions! Type1

[Rickmac1988]

Hi all,

I recently went for my yearly retinal screening a couple of weeks ago, and it wasn't great. The nurse spotted some background retinothopy and referred me to Moorfield Eye Hospital in London. I've had diabetes since I was 11 (27 now) so I guess it was only a matter of time before things like this started to happen. Over the last year I've started to notice my eyes getting worse (and now wear glasses for tv etc.) but retinothopy is something that scares me quite a bit. I try keep on top of my blood sugar, but like I said in my first post it isn't easy! I know it's early days at the minute so hopefully I can prevent any further damage.

Has anyone experienced retinothopy/ have any advice on looking after your eyes? Are there any good vitamins and that kind of thing that can help etc.?

All responses are appreciated!

Thanks,

Rick

 

[noblehead]

Hi Rick,

Understandably the diagnosis has scared the life out of you but try not to worry too much, Moorfields is one of the top eye hospital in the UK so your in the best hands.

I've had retinopathy before but have been all clear for the last 11 years, to help prevent it worsening you should try to improve your overall bg control (but if your diabetes is poorly controlled at the moment then you need to speak with your Consultant/ Ophthalmologist first) and keep your bp and cholesterol levels in check, as for vitamins I'm not too sure which ones would help improve eye health, when my retinopathy was active I was just told to eat a diet rich in fruit & vegetables which would provide the eyes with all its nutritional needs.

The following website has some fantastic information and advice on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

 

[tim2000s]

HI @Rickmac1988, I too have had on and off background retinopathy for about 8 years. Moorfields are very good with it. The key is to try and keep the variance in your glucose levels as low as possible, as well as having a good Hba1C, as that helps to reduce the proliferation of it.

I'm sure you will be fine under Moorfields.

 

[Sucre Bleu]

I think the jury is still out on whether specific vitamin formulations touted for vision health actually help;
I remember when I first started laser for my retinopathy the doctor told me to just take a general vitamin making sure it had adequate amounts of A and E, carotene, and zinc. like noblehead said, a good diet is probably of all round benefit.
I also have severe dry eye and use regular lubricating drops.
Also it is good to remember retinal specialists take care of diabetic issues, but often corneal issues run in tandem, or maybe I am just super unlucky, but if you are having any other symptoms, always good to mention them to someone so they can refer you to the appropriate specialist, for such a tiny lil thing, eyes sure have lots of specialities

 

[Rickmac1988]

HI @Rickmac1988, I too have had on and off background retinopathy for about 8 years. Moorfields are very good with it. The key is to try and keep the variance in your glucose levels as low as possible, as well as having a good Hba1C, as that helps to reduce the proliferation of it.

I'm sure you will be fine under Moorfields.

Hi @tim2000s, thanks for your reply! I've heard a lot of good things about Moorfields so I'm looking forward to going and hopefully getting it under control. I guess with all complications with diabetes it's about getting the control right to have less problems in the long run. That's the one thing that I'm still trying to get right! Definitely more cautious about what I've been eating over the past few weeks since I had my retinal screening.

 

[Rickmac1988]

Hi Rick,

Understandably the diagnosis has scared the life out of you but try not to worry too much, Moorfields is one of the top eye hospital in the UK so your in the best hands.

I've had retinopathy before but have been all clear for the last 11 years, to help prevent it worsening you should try to improve your overall bg control (but if your diabetes is poorly controlled at the moment then you need to speak with your Consultant/ Ophthalmologist first) and keep your bp and cholesterol levels in check, as for vitamins I'm not too sure which ones would help improve eye health, when my retinopathy was active I was just told to eat a diet rich in fruit & vegetables which would provide the eyes with all its nutritional needs.

The following website has some fantastic information and advice on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Thanks @noblehead, I guess the reality really sinks in when you get referred somewhere for potential complications. I'm hoping it's been spotted early enough so I get prevent anything getting worse, and it's hopefully going to give me a kick up the **** that I need in terms of getting my BG correct and everything. Thanks for the link too, I'll be sure to have a look at that!

 

[noblehead]

Good luck @Rickmac1988, as said before your in great hands at Moorfield's.

 

[SamJB]

Hi Rick, I had background retinopathy for a few years. I've been clear of it ever since I started low carbing 3 (or is it 4?) years ago. Drastic step, but not going blind is more important to me that eating carbs.

 

[Rickmac1988]

Hi Rick, I had background retinopathy for a few years. I've been clear of it ever since I started low carbing 3 (or is it 4?) years ago. Drastic step, but not going blind is more important to me that eating carbs.

Hi Sam, yeh beats going blind for sure. I don't think I'd cope if that happened so definitely need to start taking measures to prevent anything like that. Scary stuff though, like having this disease in the first place isn't hard enough without all the add-ons that come with it!

 

[Martin S]

I've been Type 1 for 42 years and my retinas are suffering due to poor control in my early life.
I've now had about 8,000 laser burns on the retina my left eye and about 1,200 on my right.
The good news is my left eye is showing signs of improvement and my right eye is stable.
There is no short cut to preventing these problems.
Keep the blood sugars and blood pressures low.
End of!
I now test my blood about 12 times a day and if I get up in the middle of the night (function of age!) I'll test again then.
It's working for me.

 

[yardman]

Hi all,

I recently went for my yearly retinal screening a couple of weeks ago, and it wasn't great. The nurse spotted some background retinothopy and referred me to Moorfield Eye Hospital in London. I've had diabetes since I was 11 (27 now) so I guess it was only a matter of time before things like this started to happen. Over the last year I've started to notice my eyes getting worse (and now wear glasses for tv etc.) but retinothopy is something that scares me quite a bit. I try keep on top of my blood sugar, but like I said in my first post it isn't easy! I know it's early days at the minute so hopefully I can prevent any further damage.

Has anyone experienced retinothopy/ have any advice on looking after your eyes? Are there any good vitamins and that kind of thing that can help etc.?

All responses are appreciated!

Thanks,

Rick

Hi Rick
I have been under Moorfields for 8 years and have had treatment for retinopathy many times.The first thing I have to say is please don't worry too much.If you take proper care of yourself, especially your HbA1c and blood pressure, you will be able to keep things under control.My vision really started to get bad in 2010 and it was found I had cataracts in both eyes.These were removed, but following that, I got macular oedema. This again spoiled my vision and I had to put steroid drops in my eyes for a year.Unfortunately my vision didn't get back to what it should be, and a scan showed I had developed cysts on my retina.Not good.BUT, in August of this year, I had an Iluvian implant in my left eye.This is like a grain of rice that is injected into the eyeball, and bingo.I now have 6/6 vision.Not only can I the bottom line on an eye chart, I can even read the tiny writing at the very bottom of the chart that says who printed it.These implants cost around £20000 but they are now available on the NHS So even with really bad luck like I had, if you look after yourself there's plenty you can do to keep your sight sharp.Speaking of bad luck.I have been to Hammersmith hospital today to meet the dialysis team as i now have stage 4 kidney failure and am due to start dialysis.Bit of a bummer, but at least I'll be able to see what I'm doing.Happy days.

 

[RAPS_od]

Has anyone experienced retinothopy/ have any advice on looking after your eyes? Are there any good vitamins and that kind of thing that can help etc.?

I've had T1 for 47 years and have had laser surgery on both eyes to treat retinopathy background growth. The surgery didn't improve my vision, but it kept me from going blind.
My first surgeries were done at the Jules Stein Eye Clinic at University of California Los Angeles (UCLA) as a part of a study (EDTRS). The surgery is scary because you're awake, but it's not exceedingly painful. After the surgery, your eye is bandaged for a day or two. (Just offering this in case they mention surgery to you.) The study also included testing whether taking aspirin would fight macular edema (it did).
Given all this, the only thing I've been told to help is to bring my diabetes under tighter control. I've done that and my eyes have been pretty stable. (I did develop cataracts, but had the surgery to fix that as well.)

 

[videoman]

Hi there, after being a T1 for,now 56 years I have had a few "bleeds" in both eyes all clearing up over a few months with no lasting effect.Still driving and on my last eye test was given 20/20 vision. Have had both eyes done for cataract removing the need for glasses.I give the team at the REI Plymouth 10 of 10n for their treatment

 

[Rickmac1988]

I've been Type 1 for 42 years and my retinas are suffering due to poor control in my early life.
I've now had about 8,000 laser burns on the retina my left eye and about 1,200 on my right.
The good news is my left eye is showing signs of improvement and my right eye is stable.
There is no short cut to preventing these problems.
Keep the blood sugars and blood pressures low.
End of!
I now test my blood about 12 times a day and if I get up in the middle of the night (function of age!) I'll test again then.
It's working for me.

Thanks for the reply Martin - good to hear that things are improving for you!

 

[Rickmac1988]

Hi Rick
I have been under Moorfields for 8 years and have had treatment for retinopathy many times.The first thing I have to say is please don't worry too much.If you take proper care of yourself, especially your HbA1c and blood pressure, you will be able to keep things under control.My vision really started to get bad in 2010 and it was found I had cataracts in both eyes.These were removed, but following that, I got macular oedema. This again spoiled my vision and I had to put steroid drops in my eyes for a year.Unfortunately my vision didn't get back to what it should be, and a scan showed I had developed cysts on my retina.Not good.BUT, in August of this year, I had an Iluvian implant in my left eye.This is like a grain of rice that is injected into the eyeball, and bingo.I now have 6/6 vision.Not only can I the bottom line on an eye chart, I can even read the tiny writing at the very bottom of the chart that says who printed it.These implants cost around £20000 but they are now available on the NHS So even with really bad luck like I had, if you look after yourself there's plenty you can do to keep your sight sharp.Speaking of bad luck.I have been to Hammersmith hospital today to meet the dialysis team as i now have stage 4 kidney failure and am due to start dialysis.Bit of a bummer, but at least I'll be able to see what I'm doing.Happy days.

Hi @yardman, sounds like Moorfields is a good place to be then - heard a lot of good things about that place so I'm sure I'll be in safe hands! It's also good to know that there's a lot of treatments available to help/ prevent anything getting worse. Like you say, the most important thing is being able to see! I hope your kidneys get better mate! Thanks for the response too!

 

[Rickmac1988]

Hi there, after being a T1 for,now 56 years I have had a few "bleeds" in both eyes all clearing up over a few months with no lasting effect.Still driving and on my last eye test was given 20/20 vision. Have had both eyes done for cataract removing the need for glasses.I give the team at the REI Plymouth 10 of 10n for their treatment

Massive respect for having Type 1 for 56 years and having 20/20 vision. I'm sure that's enough inspiration for us all!

 

[Rickmac1988]

I've had T1 for 47 years and have had laser surgery on both eyes to treat retinopathy background growth. The surgery didn't improve my vision, but it kept me from going blind.
My first surgeries were done at the Jules Stein Eye Clinic at University of California Los Angeles (UCLA) as a part of a study (EDTRS). The surgery is scary because you're awake, but it's not exceedingly painful. After the surgery, your eye is bandaged for a day or two. (Just offering this in case they mention surgery to you.) The study also included testing whether taking aspirin would fight macular edema (it did).
Given all this, the only thing I've been told to help is to bring my diabetes under tighter control. I've done that and my eyes have been pretty stable. (I did develop cataracts, but had the surgery to fix that as well.)

That's the all I'm thinking about, anything to prevent things getting worse is a positive in my view! Did they suggest to take aspirin on a daily basis then? Could be worth a shot! Thanks for the info on the surgery, I'll be sure to bear that in mind if they mention that!

 

[RAPS_od]

That's the all I'm thinking about, anything to prevent things getting worse is a positive in my view! Did they suggest to take aspirin on a daily basis then? Could be worth a shot! Thanks for the info on the surgery, I'll be sure to bear that in mind if they mention that!

Yes, aspirin on a daily basis is the recommendation. I take the enteric kind so they don't bother my stomach.
If they do recommend surgery, please be sure to let us know. I'm sure there are plenty out here who've gone through it. It isn't pleasant, but it's not the worst either. (I think the fear of the surgery is really the biggest hurdle.)
Good luck, Rick!