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Retinopathy suddenly worsened, dont know why?

themattster

themattster

Newbie
Messages
4
Location
Bournemouth
Type of diabetes
Type 1
Treatment type
Insulin
Hi I'm Matt, 41 year old male type 1 since I was 12. First time posting in a diabetes forum, whenever I've been on diabetes forums before it scares the hell out of me seeing how many different complications there are out there so have preferred to live in ignorance lol!

My control is as good as possible without living like a monk, last few hba1's are between 52-55. Been using a libre for several years which is really helpful after 25 years of finger pricks. Was diagnosed with background retinopathy around 2009, had a few zaps of laser in both eyes between then and 2012 but been pretty stable since until now. Just been for my joint retinal appointment to see my consultant and he was full of praise as usual for my glucose readings hba1 etc so I went into see the eye specialist anxious as always but deep down not expecting any significant changes. Boy was I wrong! since my last visit in June 2021 my eyes have changed from both R1 grading to right eye R2 and left eye R3. He asked me if I had changed medication in the last couple of years which I havent to my recollection apart from the covid vaccine?! I have an appointment in a month to go in for laser treatment which I expect to be a lot more invasive than the treatment I had 12 years back which was just a few short bursts lasting less than a minute. I'm pretty scared and it has brought back horrible feelings of anxiety and depression, desperately trying to stay positive and trying to tighten my blood glucose even more by eating less carbs and almost stopping drinking alcohol ( which really sucks after a long day!) Decided a long time ago to avoid any activities like scuba diving , lifting weights, doing press ups, not because I was advised to but just felt like common sense not increasing pressure to my head. Always wonder about exercise and retinopathy, I've always thought best not to push it too hard, cant see that bringing your heart rate to 180bpm and pushing your blood pressure up dramatically even for a short time is good for it?! Anyone else have any opinions on this? Would be keen to hear other peoples experiences of living with retinopathy.

Anyway that's enough for a first post

Stay healthy folks, best wishes

Matt
 
Sorry to hear that you need laser treatment. It's difficult not to feel down about it but the positives are that the problems have been discovered early and that the treatment has a very good success rate.

Regarding exercise - you are right to avoid avoid the following whist you are waiting for the laser: any exercise which increases blood pressure greatly e.g. heavy weight lifting, playing brass instruments, standing on your head; or any exercise which could be 'jarring' e.g. jogging. This would be to reduce the risk of the delicate new vessels tearing and bleeding into the eye. When you've had all your treatment and become 'stable-treated' you can ask your ophthalmologist about whether you could resume these sorts of activities safely.
https://www.diabetes.org/healthy-li...rted-safely/exercising-diabetes-complications
https://www.patientcareonline.com/view/what-kind-exercise-good-or-bad-patients-diabetes

In general, moderate exercise is good for retinopathy - it lowers blood pressure overall (and has a positive effect on mood, which is beneficial).

Regarding retinopathy and control - it sounds like your control is pretty good and you may just be one of those unlucky people who develop retinopathy at relatively low HbA1cs. However, smoking and/or high blood pressure can cause faster than expected progression so those factors (if applicable) would be more important to address than shaving a few mmol/mol off the HbA1c. Anyone who develops R3, already has a very compromised blood supply to the retina and there may be risks with low-carbing - you may end up with an unfavourable lipid balance that might do more harm than good. It might be better to target your efforts into diet and exercise that reduces your blood pressure. That would also help reduce the risk of heart attack etc.

This page talks about the relationship between HbA1c and retinopathy:- http://www.diabeticretinopathy.org.uk/prevention/hba1c_and_retinopathy.htm#rel
This page gives more detail about retinopathy progression:- http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm
 
themattster said:
Hi I'm Matt, 41 year old male type 1 since I was 12. First time posting in a diabetes forum, whenever I've been on diabetes forums before it scares the hell out of me seeing how many different complications there are out there so have preferred to live in ignorance lol!

My control is as good as possible without living like a monk, last few hba1's are between 52-55. Been using a libre for several years which is really helpful after 25 years of finger pricks. Was diagnosed with background retinopathy around 2009, had a few zaps of laser in both eyes between then and 2012 but been pretty stable since until now. Just been for my joint retinal appointment to see my consultant and he was full of praise as usual for my glucose readings hba1 etc so I went into see the eye specialist anxious as always but deep down not expecting any significant changes. Boy was I wrong! since my last visit in June 2021 my eyes have changed from both R1 grading to right eye R2 and left eye R3. He asked me if I had changed medication in the last couple of years which I havent to my recollection apart from the covid vaccine?! I have an appointment in a month to go in for laser treatment which I expect to be a lot more invasive than the treatment I had 12 years back which was just a few short bursts lasting less than a minute. I'm pretty scared and it has brought back horrible feelings of anxiety and depression, desperately trying to stay positive and trying to tighten my blood glucose even more by eating less carbs and almost stopping drinking alcohol ( which really sucks after a long day!) Decided a long time ago to avoid any activities like scuba diving , lifting weights, doing press ups, not because I was advised to but just felt like common sense not increasing pressure to my head. Always wonder about exercise and retinopathy, I've always thought best not to push it too hard, cant see that bringing your heart rate to 180bpm and pushing your blood pressure up dramatically even for a short time is good for it?! Anyone else have any opinions on this? Would be keen to hear other peoples experiences of living with retinopathy.

Anyway that's enough for a first post

Stay healthy folks, best wishes

Matt
Click to expand...
Hi Matt
I am similar to yourself, type 1 for 31 years now with pretty tight control. Consultants are always pleased with my hba1c results.
Got my first retinopathy monitoring result about 4 years ago & when discussing with my Consultant he told me that unfortunately it can be a bit of a lottery. He has some patients who have ignored their type 1 with no affect to their health & others who try hard with good hba1c's with effects to their health.
You can only do your best which you are doing.
All the best
 
I guess that so far I'm one the lucky ones, T1 for 52 years, atrocious control for some of my early years, on again off again background retinopathy for the last ten or twenty years. Thirty years ago a specialist told me I'd need laser treatment in ten years, but so far I've not needed treatment. (Though my last eye check was inconclusive, as developing cataracts meant that they couldn't get a very good look at my right eye, they are supposedly referring me for cataract treatment as a result.)

One ophthalmologist told me that stable blood sugars were the most important thing for retinopathy development (as in try to keep levels steadyish).

And the thing to remember about eye treatments is that they have been refining and improving them for decades. Modern interventions mean that very few diabetics lose their sight compared to the past, and one of the reasons for that is that changes are detected in time for modern treatments to work. And the bright side of diabetic retinopathy being so common is that treatments have had time to be refined and improved, and the doctors who do the treatments are very experienced.

Welcome to the forums @themattster , you are not alone, many diabetics have been and will be in your position, good luck with the treatment (though hopefully you won't need any luck).
 
themattster said:
Hi I'm Matt, 41 year old male type 1 since I was 12. First time posting in a diabetes forum, whenever I've been on diabetes forums before it scares the hell out of me seeing how many different complications there are out there so have preferred to live in ignorance lol!

My control is as good as possible without living like a monk, last few hba1's are between 52-55. Been using a libre for several years which is really helpful after 25 years of finger pricks. Was diagnosed with background retinopathy around 2009, had a few zaps of laser in both eyes between then and 2012 but been pretty stable since until now. Just been for my joint retinal appointment to see my consultant and he was full of praise as usual for my glucose readings hba1 etc so I went into see the eye specialist anxious as always but deep down not expecting any significant changes. Boy was I wrong! since my last visit in June 2021 my eyes have changed from both R1 grading to right eye R2 and left eye R3. He asked me if I had changed medication in the last couple of years which I havent to my recollection apart from the covid vaccine?! I have an appointment in a month to go in for laser treatment which I expect to be a lot more invasive than the treatment I had 12 years back which was just a few short bursts lasting less than a minute. I'm pretty scared and it has brought back horrible feelings of anxiety and depression, desperately trying to stay positive and trying to tighten my blood glucose even more by eating less carbs and almost stopping drinking alcohol ( which really sucks after a long day!) Decided a long time ago to avoid any activities like scuba diving , lifting weights, doing press ups, not because I was advised to but just felt like common sense not increasing pressure to my head. Always wonder about exercise and retinopathy, I've always thought best not to push it too hard, cant see that bringing your heart rate to 180bpm and pushing your blood pressure up dramatically even for a short time is good for it?! Anyone else have any opinions on this? Would be keen to hear other peoples experiences of living with retinopathy.

Anyway that's enough for a first post

Stay healthy folks, best wishes

Matt
Click to expand...

The mattster, I appreciate that was something of a shocker for you.

How is your blood pressure these days?

I'm T2, so not entirely the same condition, but was horrified a couple of years ago, despite A1cs skirting 30, I have a very minor change in one eye. (A further examination just a few days later showed clear, but that's neither here nor there.)

I am fortunate enough to be friendly with a Ophthalmology Surgeon who has a strong interest in diabetes. Needles to say speed dial was in play pretty darned quickly.

His response was retinopathy can be quite dynamic, particularly in the early stages, and based on my circumstances - excellent A1cs, decent BP and otherwise very fit and well, I should note it, but move along.

What he did stress though was that blood pressure can have quite a quiet, sneaky impact on the eyes and to ensure I kept my BP also in good shape.

My retinopathy changes disappeared.

Last year, I took part in a piece of research, relating to cardiac health in T2s. During that participation I wore a 24hr BP monitor which actually showed my BY was a bit elevated, so I now take the lowest dose of BP meds to keep that in shape.

An incidental finding of this cardia research is that BP control is important in many of our systems and functions.

I hope your treatment is a great success and you get nice and stable for a very long time.
 
Last edited:
Thanks for the responses guys and for welcoming me onboard, all very helpful comments. I agree shaving a few mmols off by blood sugar levels probably wont do a great deal but makes me feel better that at least I'm doing the best I can. I totally agree blood pressure is key, I believe even though I'm fairly fit and eat pretty healthy I think my blood pressure is naturally a bit higher than average. Even my brother who is a serious endurance/marathon runner had heart tests purely as they were doing them free at his work and the specialist said his heart was very strong but his blood pressure was a little elevated. The irony is nothing raises my bp these days like a check-up at the diabeates centre! I'm always in panic mode so when they test me im usually 160/80. Used to go in cool as a cucumber until they spotted retinopathy. Normally when I'm relaxed at home my readings are more around 135 although I've recently increased to 10mg ramipril daily, given up alcohol which is really tough ( apart from saturday nights - you gotta live eh) and trying to go for a brisk walk for 30-60 minutes daily. This seems to be working well and I've been getting readings as low as 110/65. That being said I've decided to work very little the next few weeks just while I have the surgery which I wont be able to do forever. Stress is definetely a killer and should be addressed but there's no avoiding the stresses of daily life, work, relationships, kids and health in our cases!
 
If you can get your hba1c levels down below into non diabetic levels I think you will decrease your chances of diabetic complications.

I think the reason that diabetes and pre diabetes are set at certain hba1c levels is because these are the levels thought to dramatically increase your chances of complications.
 
themattster said:
He asked me if I had changed medication in the last couple of years which I havent to my recollection apart from the covid vaccine?!
Click to expand...

One reason I didn't get the vaccine was that I knew two people who had terrible reactions. One had huge red lesions all over their body 4 days later, and the other woke up with haemorrhaging in the eyes (again 4 days later) - healthy people. It was that bad that they actually had to have a brain scan to see if anything else was going on too. Could be linked? Who knows?
 
themattster said:
Hi I'm Matt, 41 year old male type 1 since I was 12. First time posting in a diabetes forum, whenever I've been on diabetes forums before it scares the hell out of me seeing how many different complications there are out there so have preferred to live in ignorance lol!

My control is as good as possible without living like a monk, last few hba1's are between 52-55. Been using a libre for several years which is really helpful after 25 years of finger pricks. Was diagnosed with background retinopathy around 2009, had a few zaps of laser in both eyes between then and 2012 but been pretty stable since until now. Just been for my joint retinal appointment to see my consultant and he was full of praise as usual for my glucose readings hba1 etc so I went into see the eye specialist anxious as always but deep down not expecting any significant changes. Boy was I wrong! since my last visit in June 2021 my eyes have changed from both R1 grading to right eye R2 and left eye R3. He asked me if I had changed medication in the last couple of years which I havent to my recollection apart from the covid vaccine?! I have an appointment in a month to go in for laser treatment which I expect to be a lot more invasive than the treatment I had 12 years back which was just a few short bursts lasting less than a minute. I'm pretty scared and it has brought back horrible feelings of anxiety and depression, desperately trying to stay positive and trying to tighten my blood glucose even more by eating less carbs and almost stopping drinking alcohol ( which really sucks after a long day!) Decided a long time ago to avoid any activities like scuba diving , lifting weights, doing press ups, not because I was advised to but just felt like common sense not increasing pressure to my head. Always wonder about exercise and retinopathy, I've always thought best not to push it too hard, cant see that bringing your heart rate to 180bpm and pushing your blood pressure up dramatically even for a short time is good for it?! Anyone else have any opinions on this? Would be keen to hear other peoples experiences of living with retinopathy.

Anyway that's enough for a first post

Stay healthy folks, best wishes

Matt
Click to expand...
Hi Matt
I've had retinopathy that accelerated rapidly but ascribed that to pregnancy hormones. However 30 years out of diagnosis was mentioned as a time when things crop up for type 1s (Aussie pathologist). At least we don't have excess insulin levels to go with abnormal bgs which make things worse.
It is a scary time and mine developed into a full retinal bleed necessitating surgery which was successful. Sounds like yours isn't quite so critical yet as you are booked for the next stage of treatment. I was sent straight to MoorFields for a double vitrectomy. Then started getting notes re Guide Dogs from well meaning friends...
My only advice is to try and minimise any swings because the blood vessels that are proliferating in your retina don't like rollercoasters. I'd be focussing on the Time in Range thingy on your libre and not over correcting bgs just to avoid worrysome blood sugars that don't seem to be coming down fast enough... Don't panic. The options are som any more than going blind.
Re exercise, ( I am a trainer) eye pressure isn't the problem unless you've also been warned about glaucoma during your eye checks. Keeping muscles strong as you enter your 40s however will help keep you as insulin sensitive as possible. Go for 8-12 reps for muscular endurance rather big strength moves if you are worried however. And breather as you push the weight obviously!
Good luck.
I wouldn't go near scuba diving but that is not for fear of pressure just tricky to keep the jelly babies dry!
 
Dark Horse said:
Sorry to hear that you need laser treatment. It's difficult not to feel down about it but the positives are that the problems have been discovered early and that the treatment has a very good success rate.

Regarding exercise - you are right to avoid avoid the following whist you are waiting for the laser: any exercise which increases blood pressure greatly e.g. heavy weight lifting, playing brass instruments, standing on your head; or any exercise which could be 'jarring' e.g. jogging. This would be to reduce the risk of the delicate new vessels tearing and bleeding into the eye. When you've had all your treatment and become 'stable-treated' you can ask your ophthalmologist about whether you could resume these sorts of activities safely.
https://www.diabetes.org/healthy-li...rted-safely/exercising-diabetes-complications
https://www.patientcareonline.com/view/what-kind-exercise-good-or-bad-patients-diabetes

In general, moderate exercise is good for retinopathy - it lowers blood pressure overall (and has a positive effect on mood, which is beneficial).

Regarding retinopathy and control - it sounds like your control is pretty good and you may just be one of those unlucky people who develop retinopathy at relatively low HbA1cs. However, smoking and/or high blood pressure can cause faster than expected progression so those factors (if applicable) would be more important to address than shaving a few mmol/mol off the HbA1c. Anyone who develops R3, already has a very compromised blood supply to the retina and there may be risks with low-carbing - you may end up with an unfavourable lipid balance that might do more harm than good. It might be better to target your efforts into diet and exercise that reduces your blood pressure. That would also help reduce the risk of heart attack etc.

This page talks about the relationship between HbA1c and retinopathy:- http://www.diabeticretinopathy.org.uk/prevention/hba1c_and_retinopathy.htm#rel
This page gives more detail about retinopathy progression:- http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm
Click to expand...
Sorry I stand corrected re my comments on exercise though I have to say I was never advised not to as my retinpoathy accelerated.
 
Hi Matt and Nicole

Nicole please could you tell me a little more about your eye treatments?
Am 38, had type 1 for 27 years, always kept good control (mostly) but after two pregnancies my eyes have suffered. Due to start injections into the whites of my eyes and laser treatment shortly and am incredibly scared.
I just want to know....well everything! How long was it?, how painful?, what was recovery like?, did you have to inform the dvla?
Also I wear contact lenses because my vision is bat-like (not related) but worried I won't be able to wear those either ....eek so many questions!!
Sorry for all the questions just in panic mode!
 
Hi Sepage,

I wouldnt worry about the actual laser treatment itself. I had just over 1000 zaps and it took around 15 minutes. They apply like a jelly on your eye to stop it drying out as it needs to be kept open while they are doing it, they use a small instrument to do this so you dont have to worry about blinking, just stay still! I was told to take paracetamol the rest of the day and the following day but it didnt hurt too much. I experienced a shimmering effect around the edge of my eye but it is less noticeable a few weeks on. I asked about the dvla and the answer is yes although I'm not going to flag it until my temporary licence is up for renewal. Cant stand those field vision tests! Have a follow up appointment booked for 6 weeks later to see if its helping / possible more laser.

I also wear contacts and it's actually on my list of questions when I return to the eye clinic. I understand from the contact lense check ups at specsavers they are sometimes worried about lenses blocking oxygen to the eye so for the meantime im being cautious and its just glasses for me.

hope this is helpful in some way

Matt
 
Thank you Matt, that's incredibly helpful.
I've got the laser and the injections coming up, have started to compile a list of questions
It's just another of those ****** things that they tell you as a child you can avoid with good hba1cs only to change the phrase to it's because you've been type one for so long these things just happen!
Let me know on the contact lenses front, have been wondering whether corrective surgery (sight wise) could be the way forward

Thanks again and sorry for the delayed response.
 
SEPAGE said:
Thank you Matt, that's incredibly helpful.
I've got the laser and the injections coming up, have started to compile a list of questions
It's just another of those ****** things that they tell you as a child you can avoid with good hba1cs only to change the phrase to it's because you've been type one for so long these things just happen!
Let me know on the contact lenses front, have been wondering whether corrective surgery (sight wise) could be the way forward

Thanks again and sorry for the delayed response.
Click to expand...

Good luck, I hope it goes well for you.

I actually enquired while at specsavers about corrective eye surgery and they said it's not so popular these days. Depending on your prescription, I'm only about -1.25 so not too bad really but they said the major downside is if they fix the long distance vision the short vision becomes worse so you'd need reading glasses for instance if you didnt need them before. Also it only lasts 5-8 years before you'd need it again.

I'll let you know re the contacts unless you hear something first please let me know!

Thanks

Matt
 
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