# Background Retinopathy ??



## elwoodlpool (Oct 2, 2010)

Hi all,


Got a letter yesterday saying i have background retinopathy ??? 
Letter says there are changes but i don't need to go to hospital for it and it won't effect mt sight. It alsoo says i need to go back in a year...I got so down about it last night i got drunk and thought look at me 31 and falling to peices.. What next limbs off???? So now im thinking is that it now blindness ???

This is all getting too much i even felt suicidal about it... 


Mark


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## margie (Oct 2, 2010)

OK take a deep breath.

There are quite a number of people on here who have been diagnosed with background retinopathy.  Retinopathy screening is once a year for anyone with diabetes so you will be checked as often as someone with no problems - that should tell you something. If there had been a serious or potentially serious problem then they would recommend you see an eye specialist. 

Have you spoken to your GP about seeing a psychologist who specialises in coming to terms with diabetes - as it seems to me you are struggling and panicking when ever a problem comes up.

There should be a number or contact on the letter to get more info, or speak to your GP or optician who can advise you and hopefully lay to rest your worries.


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## novorapidboi26 (Oct 2, 2010)

I have it too, its just normal inevitable changes that happen to a diabetic in my opinion...............just keep the control as goo as you can, and watch the old BP......


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## LisaLQ (Oct 2, 2010)

I found out I had it soon after diagnosis too, I'm 33 and had a really low period afterwards - but when I spoke to my regular optician, he said that with good control it is reversable.  Keep your chin up xx


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## Steff (Oct 2, 2010)

Dont panic theres a handful on here who have retinopathy it does not mean the end of the world, i was told i had neuropathy the other week but it just means that i keep as tight a control of my BS as i ever have done, and luckily it seems the rneuropathy has eased off.


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## Northerner (Oct 2, 2010)

Hi Mark, as the others have said, you don't need to worry about this. Background retinopathy can resolve itself if you continue to look after yourself, try to keep your blood sugar at good levels and watch out for your blood pressure. The odd boozing session shouldn't have any effect as long as you are generally OK. When I got my letter last year I also happened to be due to see my optician for a sight eye test. She took a look and couldn't see any problems, and as she was a Type 1 herself of 17 years standing, I trusted her judgement! 

I do understand how you feel about getting such a letter, it is scary to hear that something is not perfect. I'd advise you to discuss it with your doctor, as he/she will have access to greater detail about what was found and hopefully will be able to put your mind at rest.


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## Robster65 (Oct 2, 2010)

Hi Mark. Sorry to hear about your letter. As said, it's very common and won't affect your sight as long as you take reasonable care of yourself.

Since you are so scared of anything medical, it really would be a good idea to try and get some counselling for the panics. All of these diagnoses are not as bad as you imagine them to be and the stress and worry will do you more harm than good. You're obviously a nice bloke and deserve to live a long and happy life (which you will !!) without worrying what will be roudn the corner.

Rob


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## FM001 (Oct 2, 2010)

Try not to worry to much about this Mark, as other's have suggested try to keep tight, but more important stable blood glucose and try to keep your bp below 130/70 if you can.  A diet of fresh fruit and vegetables including plenty leafy green veg is beneficial to eye health, and dark coloured fruit such as blackberries and blueberries are ideal too.  I got diagnosed with background retinopathy over 12 years ago, and although mine did progress leading to laser treatment and a vitrectomy, the last 5 years has been stable with no change whatsoever, mainly due to better bg and bp control and hopefully by the foods I now eat in my diet.  Best wishes anyway!  Toby.


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## elwoodlpool (Oct 3, 2010)

Thanks again all,,


Idid have a blow out this weekend as there is alot to deal with at the moment and that letter just topped the week off. But its back to the old straight and narrow now. Eating healthy and stuff. But again i still aint sure if im doing that right????as ive said before i drink alcohol alot less and i eat lots of brown bread and fruit and have a varied diet. I am on blood pressure tablets and my bp is usually 121/80 these days i dont eat sweets at all or choclate. And i always watch the sugar in food and try to keep it low.. But i think am i doing enough? When me and my partner fancy a take away i have one but then always feel guilty after, Ive also lost 2 1/2 stone too, 


JUst hope im doing things rght ? Off to see the nurse on the 7th so ill have a good chat with her.


Mark


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## Northerner (Oct 3, 2010)

Mark, it sounds like you are working hard and succeeding - your BP and weight loss attest to that  Don't feel guilty about the occasional 'time out' from diabetes, think of it as your reward for working so hard the rest of the time! Hope the appointment goes well


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## Twitchy (Oct 3, 2010)

Hi Mark,

I can totally relate to feelings of panic when anything to do with the eyes particularly is an issue - as a kid it was the complication which honestly terrified me most.  I have had t1 for 31 years, and was diagnosed with background retinopathy (which appears like spots in the back of the eye) some years ago. It did improve when my control was good, then I had 2 babies (with a nice round of pre eclampsia so massive BP!) and after the first preg it progressed to proliferative retinopathy, which is where extra (weak) blood vessels grow. This was almost definitely due to the massive hormonal changes during/after pregnancy, which can dramatically accelerate retinopathy, so not going to be a problem for you!  I have had to have a fair bit of lasering but let me really reassure you - things are stablising now post babies, I am not aware of any visual loss, I passed my DVLA visual field check 100% successfully, the only minor thing I have noticed is that my night vision is not brilliant - but then it never was to start with!   Although lasering is not a whole barrel of laughs, it's bearable, a bit odd, but you get used to it.

I'm not saying you will need lasering eventually, as the others have said if your control is good, things can actually improve.  What I'm trying to do is show you that the worst case scenario is not perhaps as terrifying as you might think; it's better to avoid it, but not unbearable if you do end up needing it! 

Hope that gives you some comfort & reassurance. Getting to grips with diabetes must be scary (I've never known anything else), but you can, and I am sure will live a long, and healthy life - you will just need to be a bit careful with diet etc.

All the best,

Twitchy.


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## elwoodlpool (Oct 3, 2010)

Hi Twitchy,

Thanks for that ive just had what you could call a 2 day bender drinking and thinking sod it ive felt so low and tonight i felt like crying in the car. I just keep thinking i will be the one all the horrible things happen too. I feel like crying tonight its that bad.. And im convinced when i go to se the nurse im gonna get more bad news from the blood test i had. I really feel like id be better off dead than this tourment, Just feel dreadful tonight like i can't cope..

Like i said ive had 2 days of eating 2 takeaways and drinking and my mind was in this mood.. I may as well i'll be dead soon. I honestly don't know how to carry in like this..

Mark


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## Garthion (Oct 3, 2010)

elwoodlpool said:


> Hi Twitchy,
> 
> Thanks for that ive just had what you could call a 2 day bender drinking and thinking sod it ive felt so low and tonight i felt like crying in the car. I just keep thinking i will be the one all the horrible things happen too. I feel like crying tonight its that bad.. And im convinced when i go to se the nurse im gonna get more bad news from the blood test i had. I really feel like id be better off dead than this tourment, Just feel dreadful tonight like i can't cope..
> 
> ...



Mark,

If you are feeling this way, please, please go and see you GP for an informal chat, I have been through depression (even contemplating suicide) so know how you may be feeling, the only help will be from your GP or mental health service (yes I know it can be embarassing to admit you have a problem, but it really does help) 
I was Diagnosed 10 years ago as having T1 went through the "honeymoon" stage and then began feeling that my Diabetes was taking control of me, so started going off the rails (no drinking but eating lots of chocolate) in 2004 I went DKA for the first time, scarred me silly but I still didn't control my Diabetes, it wasn't until just over 3 years ago that I took notice of my condition, when (like you) I was told I had background retinopathy, instead of making me panic and fly even further off the rails, it made me sit up and take notice of what I should be doing to help myself, at that point my HbA1C was well over 15% now it has fallen to 9.9% it takes work, but it is posible.

Before I finish I will re-itterate, please see a proffesional about how you are feeling, they will help far better than anyof us on here are able to do so.

Hope I have been of "some" helpto you.


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## elwoodlpool (Oct 3, 2010)

I will chat to my nurse this week im also really worried now that im gona loose my driving licence and its really upsetting me.. Its all so scary i don't know what to do i just feel thats it im gonna have a really misrable life.. 

Mark


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## Twitchy (Oct 3, 2010)

Hi Mark,

I understand your fears - I think every diabetic who is intelligent & honest enough to think about their condition probably feels scared sometimes.  I think it's a case of retaining perspective though - you have drawn what some might call the short straw of diabetes, but on the flip side, you will now be much more aware of what you do with your body, which in turn will stand you in much better stead than some of your non diabetic buddies!   You will also be much more closely watched by the health professionals, so the chances are if anything does crop up (whether D related or not), it will be treated earlier & therefore you'll have a better outcome - good silver lining eh? 

I *promise* you, it *WILL* get easier to cope with, but like Garthion said, definitely worth a chat with the docs. I had pnd post baby number 1, partly due to the diabetes I suspect, but getting help (counselling & antidepressants) was the right thing to do - it gave me a chance to be on an even keel until I could get my head around things & take back control. If you are getting to the stage where things feel so bleak that you can't imagine things ever feeling better, you really need to have a chat with the doc - whether they suggest antidepressants or not, chances are you'll feel better for it.  I also strongly suspect that once your levels stabilise & you get good control, you will feel so much better about all this - I know I get really low mood (as well as angry & frustrated) when my sugar levels are swinging or just high!

Re the driving thing - I totally relate to this - I work in another town, 40 mins away by car - if I had to get there by public transport I'd be stuffed, it'd take hours!  The good news is that because your retinopathy has been recognised, they will be keeping a careful watch on you - they treat early *if *(note the if, not when, if ) it turns to proliferative.  This means that the impact on your vision is minimal.  To give you some comfort, I have had type 1 for 31 years now (most of that on 2 jabs a day, so pants control), 2 pregnancies (which are known to dramatically accelerate retinopathy) and massively high BP for a while with pre eclampsia whilst pregnant (also not great for prolif retinopathy).  My proliferative retinopathy has been treated & so far, so good - no problem re driving, despite a fair bit of lasering.  As you have background retinopathy at the mo, it's even possible that as your control improves, so do your eyes! So things are really much more positive than you might think at the mo.

As for the 2 day bender - don't worry, I think we all have the odd lapse now & again!  Let it go, be kind to yourself.  Get a good night's sleep, get hold of the docs / nurse next week & collar them for some help in getting to a point where you feel better about all this, whether that is via antidepressants, or a better support in controling blood sugars etc.  Keep posting, we're here to help & support each other!  Whatever you do, don't give up - I'll say it again - things will get better!

Twitchy (((HUG!!)))


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## elwoodlpool (Oct 3, 2010)

I feel better for chatting tonight god thank you so much, Like ive said in previous posts im trying to keep it all bottled up and i dont like giving all this to my partner as she was told bad news last week. She is really supportive of me but at the mo we are going through a tough time so this site has really helped me..



Mark


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## am64 (Oct 3, 2010)

hey Mark just caught up on this and am sending Hugs ...please see the gp asap and discuss how you are feeling its important xx 
also re the 2 day bender please dont worry just cos you are dx now doesnt mean its all going to happen imediately...do eveything and give up everything  in moderation one step at a time and dont beat yourself up if you blip ...have you seen our forgive me i have sinned thread ? WE ALL DO IT !!! but not all the time anymore ...
re the eyes letter....i got that one ... but after my 2nd test i was fine ...maybe cos ive stablised my HbA1c for over a year now ...who knows ? seems to be a bit of a standard one sent out after first dx 
i saw the Blues Bro film the other day on the tv ...wow you play a big part in the show that must take alot of energy up how are you coping with that ? do you do the whole thing or just the songs ?? GREAT SONGS !!


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## elwoodlpool (Oct 4, 2010)

Yeah i do all the routines and the songs.. Have a look
http://www.youtube.com/watch?v=oyy74rMf21g 

Im the guy on the right of the stage been all over the I.k and abroad with the show. Its crazy i go on stage Mr Confident and off stage im Mr Nervous Wreck.


I really can't thank everyone enough for making me feel so welcome and all the advice has really helped me,,
This is me in the dressing room getting ready to go on at the Swansea Grand Theatre..







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Thank you all..

Mark


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## MargB (Oct 4, 2010)

You know, I am beginning to suspect that everyone who goes for the eye test gets a letter saying there are changes!  To them, it is just a letter but to us who have been recently diagnosed it is mind blowingly serious - our eyesight!!

But, now we have been diagnosed and now 'early changes' have been noted we are in the system and unless we ignore appointment letters, we will be looked after.  

Good picture, having the loo door open is so Blues Brothers!!


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## elwoodlpool (Oct 4, 2010)

Yeah it was mind blowing Marge just makes you think all kinds im really unhappy with one thing though.. When the woman looked at my Pictures of my eyes in the office she said i would'nt worry the pictures look normal. I came out thinking PHEW few weeks later i get a letter saying otherwise. I even looked at the pics myself and the woman said if i look all the arteries looked fine and there were no patch bleeds there. So i have no idea at all these days. So that makes me think what next ??


Mark


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## Twitchy (Oct 4, 2010)

I'd take the woman's comments as a really good sign actually - if the pics appeared 'normal' then presumably that means that whatever background retinopathy they have spotted is really likely to be minimal & 'normal' for someone recently diagnosed?  Good news then!   I know what you mean about things being a bit confusing at times though!

Love the pic!


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## elwoodlpool (Oct 4, 2010)

I know people say things about forums but this one has really really helped me more than you guys can imagine.. I just don't want people to think im Mr Doom and gloom as usually im quite up beat. Just this whole thing has really knocked me for six..




But again this site is amazing. 

All the best to you all..

Mark


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## novorapidboi26 (Oct 4, 2010)

Spread the word marky boy!!!!!!!!!!


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## PhilT (Oct 4, 2010)

I wouldn't worry too much about it.

At my scan last year I was told that I have background retinopathy, this was prior to going on insulin when my BG's were very high. I'm sure that my eyes will be ok when I have my next scan as my BG's are now under better control.


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## Garthion (Oct 4, 2010)

My eyes have probably gone really bad now, should have had my screening last wednesday at the hospital but I was in a different hospital with an infection so it has been re-arranged for the 1st of December, ho hum.

My eye care is done by the hospital because of the fact my retinopathy is getting to be a bit worse than I would personally like, though as yet it is not affecting my vision so I have not got too much worry of having the laser surgery (hate anything touching my eyes, so REALLY hate the eye drops.)


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## will2016 (May 22, 2011)

*thanks all*

I have just beed told i have this too, and admit i was worried sick, came on here, thinking here i go, asking yet more questions, then i found this thread which has helped and encouraged me so much, so thanks to everyone who posted good advice on here,


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## Northerner (May 22, 2011)

will2016 said:


> I have just beed told i have this too, and admit i was worried sick, came on here, thinking here i go, asking yet more questions, then i found this thread which has helped and encouraged me so much, so thanks to everyone who posted good advice on here,



It is a scary thing to hear, and I think they should educate people a little better so that they are aware of the implications - they could explain it on the letters they send out instead of just bluntly telling people they've got something wrong. Certainly, we shouldn't be complacent about it, but at least a better understanding of it would temper the fear on seeing those words for the first time. 

Hope your next scan shows either an improvement or no change Will


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## Natalie123 (May 23, 2011)

Hi Mark, I'm 23 and had the same letter. I was told after the scan that they looked normal and then got a letter saying I had background retinopathy. I panicked and thought that I was going to go blind etc. I went to speak to my GP who said that the changes were small and nothing to worry about, just need to keep blood sugars under control and keep an eye on my blood pressure. When I went for my next scan, everything came back clear and the changes had reversed themselves  Apparently, improving your sugar levels  can cause changes in your eyes, in the same way that bad control can. Small changes can then heal themselves. So basically, don't worry


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## AJLang (May 23, 2011)

I know that it's not easy but try not to worry too much about background retinopathy just take it as a warning about doing your best with BG levels - I got told that I had it when was 20 - that's over 20 years ago and I've still not needed any laser treatment for retinopathy.


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