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Diabetic Maculopathy

Mattcornford29

Member
Messages
13
Type of diabetes
Type 1
Treatment type
Insulin
Hi all, had a recent eye test and was well aware of the retinopathy in my eyes, I’ve been a type 1 diabetic diabetic for 22 years. However after my most recent eye test, I got a letter saying there were “signs of Diabetic maculopathy, tryst need to be further examined”. I have limited knowledge about maculopathy, but my sight is relatively normal, no blurriness or anything... Has anyone had a similar letter after their eye screening? And is there a reason to be highly concerned? My HBA1C as been ok in recent years, averaging around 7-7.5 so but shocked this has happened to be honest. Thanks in advance
 
Hi, I received a letter about 2 months ago saying signs of Maculopathy. Must be only slight changes. I now have 6 month reviews on it. No difference in eyesight. My eyesight is very good actually. Type 1 of 9 years. HBA1C 8.4%. It's a kick start for me to sort my self out. Now being investigated for neuropathy. Knew the associated complications of diabetes but didn't think I would experience all this in my 30s.
 
In Feb/march I got a very similar letter, I've had background retinopathy for donkeys years, but about 3 years ago they found maculopathy, but it disappeared after about a year or so, until this last one where it has returned , bizarrely I've only started getting it since my control has actually been good, typical huh (my HbA1C for the last 5 years has between between 43 and 48 and pretty stable).
Admittedly I have now had T1 for 40+ years, maybe its starting to catch up with me

Got a letter saying I'm on surveillance screening now, next in in May - though I haven't figured out how I'm getting there yet (last time my friend booked time off work to take me, cant really ask him to do that again)
 
U have to be checked every 3 months or 6 months by the surveillance team I believe so they can keep a closer observation on your eyes. I heard u can make the retinopathy worse if u improve your control too quickly. no risk for me there!
 
kvetiny said:
U have to be checked every 3 months or 6 months by the surveillance team I believe so they can keep a closer observation on your eyes. I heard u can make the retinopathy worse if u improve your control too quickly. no risk for me there!
Click to expand...

Catch 22 isn’t it. I think rollercoaster effect readings can be just as bad as constant high blood sugars. My worst HBA1C in 14 years is 61 & I have got it.
 
It's no wonder I have problems early on. I didn't try hard enough and my diabetes team well.... Lol
 
kvetiny said:
It's no wonder I have problems early on. I didn't try hard enough and my diabetes team well.... Lol
Click to expand...

What have you done to change? I think being given a finger prick kit as a teenager being expected to keep it within range for the whole of my 20s is pretty much impossible so it’s not surprising to hit problems now. Newly diagnosed people now get pumps & CGMs which changes everything imo.
 
Just making more careful choices of what I eat. Reducing my carbs down. Spilt my Lantus into 2 doses 12 hours apart. Reducing my alcohol I take. Excercising more, which is difficult at the moment.

As soon as I start using libre 1 I felt very deflated and miserable as I had a very clear picture of all the spikes and high blood sugar reading. After a while I decided to make changes. Before CGM I wouldn't of had that scope to analyse and improve.
 

Yeah totally understand how you feel, I’ve just turned 30 and it’s quite scary. Glad your eyesight is ok though
 
kvetiny said:
U have to be checked every 3 months or 6 months by the surveillance team I believe so they can keep a closer observation on your eyes. I heard u can make the retinopathy worse if u improve your control too quickly. no risk for me there!
Click to expand...

Yeah I heard that too. Definitely having lots of check ups, but letters like this really don’t explain anything, because they don’t actually tell me if it’s damaged or not. The macular that is
 

Have you had any other serious complications over the 40+ years? Right now I’m feeling doomed and that serious complications are inevitable
 
My check ups are at the hospital rather than the surveillance clinic. I think they have referred it on to hospital although everything seems very slow at the moment. I guess they just monitor it.
 
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