# Bad news



## Northerner (Aug 12, 2010)

After saying that I only get a letter about my retinal scan if there is a problem - I just got a letter  I only had the scan last Friday so am worried. It says that I have 'moderate diabetic eye disease' and need to see a specialist eye doctor. Last year they said I had background retinopathy, so obviously things have progressed. As my HbA1c has been good, at 5.6%, I can only think that it is my blood pressure that is causing the worsening.

Has anyone else had this 'moderate' letter, and can tell me what it might entail?


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## novorapidboi26 (Aug 12, 2010)

Thats unfortunate northey..............

I have background retinopathy........ and also what they call high blood pressure.........and I have never been below 8 in my HbA1c......

Im getting worried now...........


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## Steff (Aug 12, 2010)

Oh dear Alan sorry to hear that I cant answer your question but I do hope things will be ok, we often get letters like this and build up a whole load of worry in our heads but try and keep level headed.Have they sent you an appointment or do you have to make it?


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## AlisonM (Aug 12, 2010)

Oh babe. I wich I could help, but my last (and first) screening showed no abnormalities so I'm not sure what the process will be. There are folk on here who have had some alterations in their vision and I've no doubt they'll be able to help though.


(((BIG HUGS)))


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## Northerner (Aug 12, 2010)

Steffie said:


> Oh dear Alan sorry to hear that I cant answer your question but I do hope things will be ok, we often get letters like this and build up a whole load of worry in our heads but try and keep level headed.Have they sent you an appointment or do you have to make it?



They said I will be sent an appointment. A bit unfair, I suppose, given that since diagnosis my HbA1c has been 11.8, 6.8, 5.2, 5.4. 5.6 and 5.6. Just goes to show that you can't rely on just that one aspect of your health, but also to consider things like blood pressure.


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## KayC (Aug 12, 2010)

Hi Alan
Cannot give you any advice (as usual) because don't know anything about eyes.  I strongly hope it's nothing serious...I wish you all the best.

Kay


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## Northerner (Aug 12, 2010)

AlisonM said:


> Oh babe. I wich I could help, but my last (and first) screening showed no abnormalities so I'm not sure what the process will be. There are folk on here who have had some alterations in their vision and I've no doubt they'll be able to help though.
> 
> 
> (((BIG HUGS)))



Thanks Alison  Off to google it now - don't worry, I won't believe everything I read!


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## am64 (Aug 12, 2010)

Very sorry to hear that northe ..... if it is anything...big IF .. at least through the screening they'd have caught it quickly and will get it sorted im positive ...they as so sophisticated  with eye treatment these days xxx big hugs


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## Caroline (Aug 12, 2010)

I'm sorry to hear about the bad news, but on an optomistic note, caught early things are treatable. It is easier said than done to say don't worry. Keep the appointment and let us know how you get on.


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## falcon123 (Aug 12, 2010)

Good luck Alan. Hopefully it will prove to be a "false positive". The number of these seems to be increasing and may be related to the US "sue sue" culture which seems to be speading here. These sometimes seem to be sent as a precaution and often result in the consultant reporting minor diabetic related changes not requiring treatment. How many meds are you on for BP? Some consultants now recommend combining a CCI with a *pril rather than increasing the *pril.


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## lucy123 (Aug 12, 2010)

Sorry to hear your news but as said, picked up early and most likely treatable if anything at all.

Big hug to you today!


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## Northerner (Aug 12, 2010)

falcon123 said:


> Good luck Alan. Hopefully it will prove to be a "false positive". The number of these seems to be increasing and may be related to the US "sue sue" culture which seems to be speading here. These sometimes seem to be sent as a precaution and often result in the consultant reporting minor diabetic related changes not requiring treatment. How many meds are you on for BP? Some consultants now recommend combining a CCI with a *pril rather than increasing the *pril.



Thanks everyone, I know it's not the end of the world, just a little alarming when you think you are doing (almost!) everything right! 

Falcon, I should have been a bit suspicious as the guy doing the scan took 5 pictures of my right eye and only a quick two of my left. I'm on Candesartan for my BP - I was on minimum dose of 2mg, but doc has been increasing it recently and I'm now up to 8mg. Maximum dose is 32 mg. I didn't get on with ramipril when I was on it, so I was changed to the candesartan. Doctor said if it hasn't come down by next appt. (next week) then I may have to increase further or take another med alongside. Problem with increasing it seems to be that it affects my hypo awareness - I can drop well below 3 before I notice anything - so increasing might put me in danger.

Happy days! Might be a false positive, as you say!


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## novorapidboi26 (Aug 12, 2010)

I am on 20 g of Lisinopril................

I am only 26 as well, do you know if there is a difference in strength in Lisinopril and the tabs you mentioned


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## everydayupsanddowns (Aug 12, 2010)

Sorry to hear your news Alan.

Must feel like a kick in the teeth after all your excellent hard work in keeping your HbA1c down.

For the first time this year I was told I had some 'background' in my scan, so perhaps I'll be following down the same path next scan


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## Dizzydi (Aug 12, 2010)

Hi Northy, sorry to hear your bad news and unfortunately I cannot help with advice. I've got my fingers crossed for you everything will be ok. As others have said it has been caught early and they can do amazing things these day.
sending you my love Di x


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## zippy (Aug 12, 2010)

Norttherner, almost exactly the same happened to me at my last screening.  After years of letters saying there were "minor diabetic changes" which didn't need any treatment, this time I got a letter sent 2 days after the screening saying there were changes and I would be sent an appointment for the eye clinic.  I had myself convinced that this was "it" and that I was finally going to need laser, etc etc etc.  I was a total wreck 

My appointment was about a month later and I went along, dreading it.  Turned out, my eyes have got slightly worse and are now beyond the point where it can be classed as minor and monitored through annual screening but still don't need treatment (don't think I have ever been as releived in my life as I was when I heard that!)  I have to go back in another 4 months and see how things have progressed then, after which appointments will become 6 monthly.

I think what I am trying to say in the above ramble is that this letter doesn't necessarily mean things are "bad" its just they need monitored a bit more closely than before.  Hopefully things will be similar for you.  
Good luck


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## Emmal31 (Aug 12, 2010)

Hi Northerner

Sorry to hear that, I hope that you can get things sorted. Keep us posted on how you get on x


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## Northerner (Aug 12, 2010)

Thanks again everyone for your good wishes  

Zippy, thank you for that reassurance. I'm pretty sure there are things that I can do to improve things. I think I have become a little complacent in areas of my life because of all the good results, so it's time to get serious again! Apparently, there are three stages before actual intervention is needed: minor, moderate and severe non-proliferative. If it gets worse after that then it becomes proliferative and sight-threatening, but treatment is available with lasers etc. (as many on here have described ). Hopefully, after this check, the next one will drop me 'down' a grade back to 'minor'.


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## Andy HB (Aug 12, 2010)

Curses! 

I hope it turns out OK.

Andy


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## rachelha (Aug 12, 2010)

SOrry to hear that Alan, hope it is not serious

Rachel


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## HelenM (Aug 12, 2010)

Hope you don't have to wait too long for the appointment, the worst part about these things is waiting.
I think  BP is something that you'll have to watch, it plays an important part in keeping things under control. ( so says me who never remembers that  was told to  do morning checks  every few days) )
As you know I've written that I wonder how much  the variation caused by hypos have to do with it.  I know, like you I was shocked to find some changes in spite of really good HbA1cs.
Good luck
Helen


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## lawlessd (Aug 12, 2010)

Hi North,

Sorry to read you post.

I posted earlier this year to advise of incorrect testing i got from the local auth screening guys.  

When i went to Moorfields eye hospital they advised the tests will always report on the 'negative' side, to avoid missing anything.

I know it wont make any difference, but try not to worry mate, hopefully they are just reporting over cautiously.  Fingers crossed for you.


Lawlessd


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## Catwoman76 (Aug 12, 2010)

Hi Northerner About 2 yrs ago I had my usual eye test, the optition said he was going to write to my doctor because he was very concerned about my eyes. I was concerned about this and later on I received a letter from  Salisbury  asking me to attend a specailist eye screening.The doc there said there wasn't much to worry about and he had seen much worse and wasn't overly concerned , he thought my optition was being over cautious . My next appt is 20 august(if it doesn't get cancelled again). It's always the unknown that is more frightening and I hope your letter doesn't cause you to many sleepless nights. Take care Sheena


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## tracey w (Aug 12, 2010)

Sorry to hear Northe, hope all works out OK


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## Carina1962 (Aug 12, 2010)

Northerner, i know it's easier said than done because i'm a born worrier anyway but try and be positive and think that these days they can deal with these thngs a lot better and that's the whole point of us being checked so thoroughly so that things can be caught early and dealt with.  Your HbA1c to me is excellent but from what you've said in the past your BP is on the high side, mine borders on high and i too am keeping a close eye on my BP but you'll be fine i'm sure


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## Northerner (Aug 12, 2010)

Thanks again everyone for all your good wishes and for sharing your experiences  I think I went from upset, to scared, to miserable, to inquisitive, to fatalistic, to motivated ? so I?ll try and stay with that!


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## wakman (Aug 12, 2010)

I hope so but i wish you good luck mate all the same. could happen to anyone of us.


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## cazscot (Aug 12, 2010)

Sorry to hear this Alan, it does seem really unfair considering how well you control your D . Hope you manage to get an early appointment and it gets sorted quickly (((hugs)))


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## Corrine (Aug 12, 2010)

I'm sorry to hear that - let's hope they are erring on the side of caution.  Hope it gets sorted quickly for you. xx


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## Northerner (Aug 12, 2010)

wakman said:


> I hope so but i wish you good luck mate all the same. could happen to anyone of us.





cazscot said:


> Sorry to hear this Alan, it does seem really unfair considering how well you control your D . Hope you manage to get an early appointment and it gets sorted quickly (((hugs)))





Corrine said:


> I'm sorry to hear that - let's hope they are erring on the side of caution.  Hope it gets sorted quickly for you. xx



Thanks guys  Think I've got over the shock of the letter now, and I know people have much more to deal with than me. I think it just makes you lose hope a little initially, when you think you're doing well. It was like that when I got diagnosed - had thought I was in pretty good shape for my age until they had finished with me, then I felt like I was falling apart! If there's one thing diabetes teaches you, it's that you can't take things for granted.


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## traceycat (Aug 12, 2010)

sorry to hear that northener, hope all goes well for you at your appointment.


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## rossi_mac (Aug 12, 2010)

Northerner said:


> Thanks again everyone for all your good wishes and for sharing your experiences  I think I went from upset, to scared, to miserable, to inquisitive, to fatalistic, to motivated ? so I?ll try and stay with that!



Wowser that's an emotional rollercoaster if ever I've heard of one.

Hope you're okay and it sorts itself out.

Take care big fella,

Rossi


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## lyndasw (Aug 12, 2010)

oh really sorry to hear about this.  Hope that appointment comes quickly and wishing you all the best for it.


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## Robster65 (Aug 12, 2010)

Just catching up.

As others have said, they send out 'the letter' for even the slightest change from last time. Out of my last 3 screenings, I was referred the first 2 times and nothing was needed but this last time the specialist said things were a bit worse, but still no treatment, although she lasered a slight bulge in the fluid (the aptly named 'humour') which was uncomfortable but there have been no after-effects. 
She said that the A1c is crucial to healthy eyes but a sudden, large drop can be as bad as a rise, so, as is our lot, damned either way 
I have kept her words in mind when trying to gain better control but you can only try your best.
I'm sure it's only a routine referral and they'll send you home feeling relieved.
I'm on 5mg Ramipril and 20mg simvastatin btw. Your running should be helping your BP I'd have thought.

Rob


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## Sugarbum (Aug 12, 2010)

Sorry to hear about this Alan. 

I hope everything is ok and hopefully when you get a review things aren't as bad as you fear.

Im sad for you also- such great HbA1cs, if this is diabetes related then you have been exceptionally unlucky.

All the best with getting it sorted,

Lou x


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## bev (Aug 12, 2010)

I am quite shocked that you have had this letter Alan, your hba1c is always perfect - so how can your eyes be affected already? The good news is that you should be able to get some treatment for it if you need any.Bev x


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## shiv (Aug 12, 2010)

Sorry to hear Northe - I hope the next appointment goes well and they can put any worries to rest and confirm exactly what's going on.


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## thedame (Aug 13, 2010)

Oh dear- sorry to hear about the "glitch" - hope it is just that. Sometimes these letters are "just routine" to cover their backs - they don't care that they play with our minds. Best of luck xxx


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## Barb (Aug 13, 2010)

*Eye problems*

Hope you have your follow-up appointment and more positive news soon. Stay motivated, you're doing all the right things.



Northerner said:


> After saying that I only get a letter about my retinal scan if there is a problem - I just got a letter  I only had the scan last Friday so am worried. It says that I have 'moderate diabetic eye disease' and need to see a specialist eye doctor. Last year they said I had background retinopathy, so obviously things have progressed. As my HbA1c has been good, at 5.6%, I can only think that it is my blood pressure that is causing the worsening.
> 
> Has anyone else had this 'moderate' letter, and can tell me what it might entail?


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## margie (Aug 14, 2010)

Hi Alan - sorry that you got 'the letter'. Hopefully when you see the Dr, it will be just that they are being over-cautious.  

Good luck


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## Patricia (Aug 14, 2010)

Hello Northe, just catching up. Through this thread you've progressed from distressed to motivated - wow. Shows how and why you are able to achieve such brilliant HbA1cs... Such an inspiration. 

Fingers mega-crossed that this is a blip for you with options you can put into action. Sigh. There are so many factors it seems in if when why complications of any sort rear their ugly heads - other conditions, genetics. As you say. But you've got control over the biggest factor, that's for sure. Well done in spades. 

Take care.


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## Laura22 (Aug 14, 2010)

Sorry to hear that. I also have backround retinopathy


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## AJLang (Aug 17, 2010)

Hi Northerner

I hope that everything is ok when you see the eye departmnent.  It can always be worrying when you wait for the appointmnet but I hope that you are still feeling motivated.  You may have already thought of this but I've found it increasingly helpful to take a list of questions with me to the eye department e.g. what's the confirmed diagnosis? Will it affect my sight? What's the prognosis?  Will I need other tests? If yes what will those other tests involve and what are you looking for with the tests?  Do I need treatment and, if yes, what's the treatment?  If there is treatment what are the risks (if any)?  Do I need to inform the DVLA? I'm sure that you've already thought of these questions but if not I hope that they help


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## RWJ (Aug 17, 2010)

Can't comment on the condition, but best wishes


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## Northerner (Aug 17, 2010)

AJLang said:


> Hi Northerner
> 
> I hope that everything is ok when you see the eye departmnent.  It can always be worrying when you wait for the appointmnet but I hope that you are still feeling motivated.  You may have already thought of this but I've found it increasingly helpful to take a list of questions with me to the eye department e.g. what's the confirmed diagnosis? Will it affect my sight? What's the prognosis?  Will I need other tests? If yes what will those other tests involve and what are you looking for with the tests?  Do I need treatment and, if yes, what's the treatment?  If there is treatment what are the risks (if any)?  Do I need to inform the DVLA? I'm sure that you've already thought of these questions but if not I hope that they help



Thanks very much for that AJ - I hadn't thought to ask any of those questions, but I will now!  I'm still motivated and maybe I have pushed it to the back of my mind so I don't get myself in a tizzy - could be why I didn't think of any questions. At the moment I'm working hard on being very good in the hope that my blood pressure will come down - I'm sure that's a major factor in all this. I'm seeing the GP tomorrow to see if I need a change of medication, or if things have improved since I last saw her.


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## Curdster (Aug 17, 2010)

Northerner. I have had this, and been through the treatment. It's not that bad, and if you need some reassurance the following may help. There is no need to panic, this is not life or death, and I saw it as just part of diabetes experience. I don't know how long they have been able to treat the condition, but I am guessing that in the early years it may not have been possible, and hence more blindness occurred. 

My improved control about 8 years ago led to a drop in my H1 and I was subsequently diagnosed with background retinopathy a couple of years later. I had to have laser treatment which has not affected my vision at all but has prevented retinal bleeds. I still don't wear glasses and have no need for a dog or stick!!!
If you do need laser, don't be afraid of it. The procedure is simple. They place a lense onto your eye ball but do use some anaesthetic solution so it feels a bit like a contact lens I guess. The laser is then fired into the eye and it prickles a little but does not hurt. After the session your eye will be affected by bright light for about 5 hours so take some sunglasses with you. They only seem to do 1 eye at a time too. By the next morning there was no ill effects at all.
Good luck, although you won't need it.


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## Northerner (Aug 17, 2010)

Thanks for that Curdster, it helps when you know what might happen and reassuring when you describe it. I'm hoping that I won't need any treatment, but am hoping to go prepared for it (and not a gibbering wreck!)


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## Flutterby (Aug 17, 2010)

Sorry to hear about your letter, I was really upset when I got mine.  Think they must word them a bit different here as mine said I had diabetic maculopathy which needed treatment although I do also have background retinopathy.  I had the lasers and it wasn't that bad, there was no pain, just fear and discomfort and my eye was sore for a few hours.  Wishing you all the best with your appt.xx


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## lanzlady (Aug 17, 2010)

I had my first screening in June this year results came back saying I had slight diabetes damage to my right eye otherwords slight retinopathy only DX in Jan this year with type 2 but have had hbp problems since the last 12 years I am blaming this for my results as my BG level are all within target range the only other explanation is I have had D for much longer before DX.
Hope everything goes ok but I know how you are feeling at the moment. 
I don't have to go back until next year so fingers crossed it hasn't progressed.



Lanzlady


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