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Northerner

Northerner

Admin (Retired)
Relationship to Diabetes
Type 1
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?
 
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...........
 
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?
 
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)))
 
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?
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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.
 
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
 
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)))
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Thanks Alison 🙂 Off to google it now - don't worry, I won't believe everything I read! 😉
 
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 🙂
 
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.
 
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.
 
Sorry to hear your news but as said, picked up early and most likely treatable if anything at all.

Big hug to you today!
 
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.
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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! 😉
 
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
 
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 :(
 
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
 
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 🙂
 
Hi Northerner

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