# Background retinopathy?



## EmmyBuzz (Apr 22, 2016)

So I had my first diabetic eye screening last Friday and I got my results in the post today, apparently I have some background retinopathy, obviously my diabetes was not controlled at all until February when I was diagnosed so I guess that's why? I've not done the worlds best job at controlling my sugars since I have been diagnosed either, I tend to be ok during the day rarely going above 8 and then high (I am talking usually between 12-20) at night - though sometimes that's through my own stubbornness to not not eat what I want to eat... (And not giving myself any extra insulin because the nurses said ideally it should be 3-4 hours between doses and it's not been 3 hours since I last had some) bit of a wake up I guess to managing them better...

Is it common to have some background retinopathy? What can I expect in the future? If I get myself sorted can it stay as background retinopathy for a long time?


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## Annette (Apr 22, 2016)

EmmyBuzz said:


> So I had my first diabetic eye screening last Friday and I got my results in the post today, apparently I have some background retinopathy, obviously my diabetes was not controlled at all until February when I was diagnosed so I guess that's why? I've not done the worlds best job at controlling my sugars since I have been diagnosed either, I tend to be ok during the day rarely going above 8 and then high (I am talking usually between 12-20) at night - though sometimes that's through my own stubbornness to not not eat what I want to eat... (And not giving myself any extra insulin because the nurses said ideally it should be 3-4 hours between doses and it's not been 3 hours since I last had some) but of a wake up I guess to managing them better...
> 
> Is it common to have some background retinopathy? What can I expect in the future? If I get myself sorted can it stay as background retinopathy for a long time?


Yes, its common. And yes, if you have/get reasonable control, it can remain stable or even improve. So dont despair, just work on your bgs.


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## Northerner (Apr 22, 2016)

Hi EmmyBuzz, yes it is fairly common to get some background retinopathy, particularly soon after diagnosis when you rightly say that your levels would have been very poor beforehand. The good thing is that, with good management of your diabetes, you can turn things around ans stop things getting any worse - sometimes the follow-up examination will come back clear of any problems  So, it's a very good incentive to try and make improvements to your control, particularly where you already know you could.  So, do try your best to eat better in the evenings if you know this to be a problem area for you - you want your eyes to last you for the rest of your life, so it's not worth taking any unnecessary risks


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## EmmyBuzz (Apr 22, 2016)

Thanks for the replies! I had presumed it would be something I could not improve on that it would only get worse so I'm quite relieved!  Definitely good motivation to work on my levels, stop this 'screw it I'm just going to eat it' attitude I have some evenings and to try to snacking less at night. Maybe just having a bigger meal for tea in the first place and having more insulin to deal with the carbs in it will help! Hopefully the carb counting course I start in May will also help me learn to adjust my doses more successfully too


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## Carolg (Apr 22, 2016)

Hi EmmyBuzz. I used to be a night time grazer, but somehow cured the habit(mostly). It was hard when I had the mind set of "what can I have next?". I think it helps cause if I watch tv, I watch things on catch up, so I fast forward ads, which reduces the "go to " kitchen time.

I haven't got retinopathy but got a fright at diagnosis of diabetes that my vision was so blurry.
 Good luck with any changes you can make. Carol


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## EmmyBuzz (Apr 22, 2016)

I'm glad you are mostly cured of the habit Carolg! I had the horrible blurred vision for around two weeks after diagnosis too which I really hope to never experience again it was horrible! I get that almost constant 'what can I have next' feeIing when I'm not busy doing things, I have always been very all or nothing with food often only eating in the evenings so I suppose it's that mind set and habit I need to get out of now I am eating 3 meals a day, at least I know what's causing the high levels so I can work on it!


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## Northerner (Apr 22, 2016)

EmmyBuzz, why not try some no/low carb snacks if you feel the urge? Things like nuts or cheese will have negligible effects on your levels. I'm sure the course will help you to improve things  I used to be a snacker too, but decided that I didn't want to push my levels high or have extra insulin for the sake of a biscuit or two, so gradually stopped, apart from the no-carb snacks - even those I don't have as often, it's usually boredom or habit that makes us snack like that.


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## TheClockworkDodo (Apr 22, 2016)

I snack on walnuts and Green & Black's dark (85% cocoa) chocolate, which has very few carbs, so long as you can just eat a couple of squares and not a whole bar!  Or a couple of TUC biscuits (3g carbs each) and a chunk of cheese if I am actually hungry and not just snacking because I'm a habitual snacker ...


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## Cleo (Apr 22, 2016)

I remember getting that letter as well - I was so worried ! Try not to worry - I've been type 1 for 20 years and have it in both eyes. My consultant told me not to worry and that its reversible , so they don't actually consider it a "complication" as such x


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## Diabeticliberty (Apr 22, 2016)

I feel that background retinopathy is extremely common in type 1 and type 2 diabetics. I have had it for over 5 years and have been type 1 diabetic for 32 years. It is caused by tiny scarring that occurs on the back of the retina.  It probably feels like quite a scary time being told you have it but it really is nothing to worry about. Please just ensure that you attend your regular visits to have the situation monitored. It has already been suggested that the thing can go away over time which if course it can. My own came and then went and then reappeared. The main thing with your own is that it is now recorded and will be monitored.  It does not affect your ability to drive or anything else for that matter. It is just a very minor complication of diabetes. Please do not worry about it.


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## Northerner (Apr 22, 2016)

Just one little word of warning though - it shouldn't be dismissed. Whilst most BR is harmless, it can depend on where it appears on the retina. There is an area called the macula which is responsible for your central vision, and it can be more problematical if the unwanted blood vessels appear near to this area. I've been unlucky enough for that to happen, and although this has meant absolutely minimal treatment over the past 5 years it is something I need to keep very much in mind and try to maintain good control of my diabetes and blood pressure. If you are affected in this way then the letter you get will be different from the standard BR letter, and you will most likely be monitored more frequently.


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## EmmyBuzz (Apr 22, 2016)

Thanks for the reasurance everyoneit was a horrid letter to receive this morning because I (like I always do) immediately thought the worst! They just said background retinopathy this time Northerner so I don't think it is in that area (fingers crossed!) it's certainly woken me up a bit and hopefully I can use it to help motivate me to get things properly under control! I think I'm going to work on first introducing low carb snacks in the evening and then cut back from there if I can and tonight I have had an extra unit with my tea so fingers crossed that will keep me at a more steady level this evening!


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## Northerner (Apr 22, 2016)

Everyone thinks that letter is horrid, Emmy  It's the way they phrase it without any real explanation of what it means. 

Sounds like you have a good plan, good luck!


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## TheClockworkDodo (Apr 22, 2016)

@EmmyBuzz - I meant to say but forgot - you mentioned not giving yourself extra insulin because it hasn't been long enough since your last dose - if you eat something extra which you haven't already injected for, then you can inject extra insulin, however short a time it is since you last injected.  It's not like taking painkillers or something where the time really needs to be left.  I often split my dose and have enough just for my first course and then inject again for my second course an hour or two later, when I actually eat it.  So if you have an evening when you really want to eat a chunk of cake you hadn't planned for and it's only an hour since you last injected ... well, obviously the best thing is to resist and eat some cheese instead, but if you can't resist, do inject for the cake rather than eating it without injecting!


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## Northerner (Apr 22, 2016)

TheClockworkDodo said:


> @EmmyBuzz - I meant to say but forgot - you mentioned not giving yourself extra insulin because it hasn't been long enough since your last dose - if you eat something extra which you haven't already injected for, then you can inject extra insulin, however short a time it is since you last injected.  It's not like taking painkillers or something where the time really needs to be left.  I often split my dose and have enough just for my first course and then inject again for my second course an hour or two later, when I actually eat it.  So if you have an evening when you really want to eat a chunk of cake you hadn't planned for and it's only an hour since you last injected ... well, obviously the best thing is to resist and eat some cheese instead, but if you can't resist, do inject for the cake rather than eating it without injecting!


Have to admit I have always resisted doing this in the evenings because of the potential for miscalculating and then leaving insulin still 'circulating' after I've gone to bed, and maybe risking a night hypo  I like all the evening meal insulin to be 'used up' before bedtime


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## TheClockworkDodo (Apr 22, 2016)

I see what you mean, Alan, but if I'm having a high-carb desert I can't inject for it at the beginning of my meal because I'd be hypo before I was half-way through my first course!  And it would take about half an hour to an hour for me to un-hypo in those circumstances, too.  So I split my injection as a matter of course.  I do more often do this at lunchtime though, if we're out somewhere and have had a packed lunch, and then want tea and cake in a cafe an hour or so later.

I also sometimes inject tiny amounts of Novorapid when I'm going to bed, if I want a bedtime snack and my level is 8ish rather than 5ish (I'm talking half a unit here though, and if in doubt I'd underestimate rather than overestimate).


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## Annette (Apr 22, 2016)

Not everyone has your levels of selfcontrol northie There are times when I NEED to eat something in the evening and so I do, with insulin, even if it means going to bed with IOB. But then you have odd hypos after long lasting novorapid that I never do, so are more vigilant over that than me.


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## EmmyBuzz (Apr 23, 2016)

Good to know I could inject a bit sooner, I did wonder because you cant always eat exactly 100% the same pattern of meals, I suppose its just being aware of potential hypos if you have insulin still on board - I may try that too one night if I really cant resist a snack-y kinda evening! 

This has actually motivated me to have a really good day today, the extra unit I had at tea time landed me at 6.6 instead of 12 or above as usual! Though for going to bed I don't feel like 6.6 is enough (this is another reason why I end up high and haven't been doing much about it, feeling like I need to be high before bed..) so I have had a bedtime snack of 2 crumpets when I took my lantus so I'm going to test again before I actually go to bed and see if its shot me up too high and then if so maybe tomorrow I will try just 1 crumpet rather than 2! Its such a balancing act sometimes!


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## Northerner (Apr 23, 2016)

EmmyBuzz said:


> Good to know I could inject a bit sooner, I did wonder because you cant always eat exactly 100% the same pattern of meals, I suppose its just being aware of potential hypos if you have insulin still on board - I may try that too one night if I really cant resist a snack-y kinda evening!
> 
> This has actually motivated me to have a really good day today, the extra unit I had at tea time landed me at 6.6 instead of 12 or above as usual! Though for going to bed I don't feel like 6.6 is enough (this is another reason why I end up high and haven't been doing much about it, feeling like I need to be high before bed..) so I have had a bedtime snack of 2 crumpets when I took my lantus so I'm going to test again before I actually go to bed and see if its shot me up too high and then if so maybe tomorrow I will try just 1 crumpet rather than 2! Its such a balancing act sometimes!


What are you waking up to in the mornings? If you are having to go to bed high (anything above 7, really) in order to wake at a good number in the mornings then your lantus dose is probably too high. I was the same when I was first diagnosed, and always had a slice of bread and peanut butter before bed to 'keep my levels up' until I realised it would be better for me to reduce my lantus. That having been said, it also depends on when you are taking your before bed reading and how long it is after you injected - if it's less than 5 hours you may still have active novorapid (novorapid can last from 3-5 hours in a person).

Hope you have a good day!


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## EmmyBuzz (Apr 23, 2016)

I've had a variety of morning readings recently lowest 3.9, highest 7.6. So no proper morning hypos for awhile and not really a much of a pattern, infact the nights I went to bed at my highest I woke up in the 4's! Evening readings recently have been between 11.2 and 22.0 but to be honest I have been testing up to 3 hours before going to bed as sometimes if I am high enough when I test to drive home from work at 11pm I don't test again even after my lantus! I am trying to get into a routine of testing just before bed so I know exactly what I go to bed on which may help me figure out what's going on! I think some of the going to bed high is more me being paranoid, I live alone so night time hypos are one of the things that worries me most...

I am usually take my novorapid between 8 and 9 and rarely go to bed before 1-2am (I'm a bit nocturnal) so I suppose there could be a little in my system still sometimes I do however feel like my lantus is wearing off in the evening because I seem to need more insulin but then that might just be because of this evening snacking! 

Last night I was 12.9 post 2 crumpets! This morning I was 5.1 (but I didn't test immediately on getting up) so tonight I will try and cut down to 1 and see what I wake up to!


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## TheClockworkDodo (Apr 23, 2016)

I think life will get easier once you have learned to count carbs properly, as it's all a bit guesswork at first, working out what works for you and what doesn't - with your pancreas occasionally popping out a bit of insulin just to confuse matters.

But you should be aiming to go to bed with your reading around 7 or 8 without needing crumpets (or maybe half a crumpet just in case of suddenly active pancreas), and if that means you wake up hypo (or wake up high with a banging headache, which means your blood sugar has been too low overnight) then you're probably having too much Lantus, as Alan said.


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## EmmyBuzz (Apr 24, 2016)

I'm hoping once I start the carb counting course I will find more of a balance generally but for now I have a food/diabetes diary so I am adjusting myself a little compared to previous responses to certain amounts of carbs/insulin! I do need to try going to bed lower and see where I wake up at.. I suspect it won't be as bad as I think it will... 

Last night was not successful, I thought I figured out what insulin I needed, I was still annoyingly at 12.7 three hours after so I snacked anyway (stupid logic..) ended up feeling sorry for myself and crazy high.. I need to remind myself that it's for my own future health that I am trying to do this, which is something I easily forget in a moment of anti-diabetes 'why can't I just eat what the hell I want to' rage!

Trying again tonight for better levels!


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