1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2022 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Diabetic Maculopathy

Discussion in 'Diabetes Complications' started by Mattcornford29, Apr 21, 2021.

  1. Mattcornford29

    Mattcornford29 Type 1 · Member

    Messages:
    13
    Likes Received:
    10
    Trophy Points:
    23
    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
     
  2. kvetiny

    kvetiny Type 1 · Well-Known Member

    Messages:
    149
    Likes Received:
    64
    Trophy Points:
    68
    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.
     
  3. Rokaab

    Rokaab Type 1 · Well-Known Member

    Messages:
    1,931
    Likes Received:
    933
    Trophy Points:
    153
    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)
     
  4. kvetiny

    kvetiny Type 1 · Well-Known Member

    Messages:
    149
    Likes Received:
    64
    Trophy Points:
    68
    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!
     
  5. Wanderer89

    Wanderer89 Type 1 · Well-Known Member

    Messages:
    57
    Likes Received:
    30
    Trophy Points:
    38
    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.
     
  6. kvetiny

    kvetiny Type 1 · Well-Known Member

    Messages:
    149
    Likes Received:
    64
    Trophy Points:
    68
    It's no wonder I have problems early on. I didn't try hard enough and my diabetes team well.... Lol
     
  7. Wanderer89

    Wanderer89 Type 1 · Well-Known Member

    Messages:
    57
    Likes Received:
    30
    Trophy Points:
    38
    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.
     
    • Like Like x 1
    • Agree Agree x 1
  8. kvetiny

    kvetiny Type 1 · Well-Known Member

    Messages:
    149
    Likes Received:
    64
    Trophy Points:
    68
    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.
     
  9. Mattcornford29

    Mattcornford29 Type 1 · Member

    Messages:
    13
    Likes Received:
    10
    Trophy Points:
    23
    Yeah totally understand how you feel, I’ve just turned 30 and it’s quite scary. Glad your eyesight is ok though
     
  10. Mattcornford29

    Mattcornford29 Type 1 · Member

    Messages:
    13
    Likes Received:
    10
    Trophy Points:
    23
    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
     
  11. Mattcornford29

    Mattcornford29 Type 1 · Member

    Messages:
    13
    Likes Received:
    10
    Trophy Points:
    23
    Have you had any other serious complications over the 40+ years? Right now I’m feeling doomed and that serious complications are inevitable
     
  12. Rokaab

    Rokaab Type 1 · Well-Known Member

    Messages:
    1,931
    Likes Received:
    933
    Trophy Points:
    153
    Apart from being a grumpy pessimistic old sod at times, no :)
     
    • Like Like x 2
  13. Wanderer89

    Wanderer89 Type 1 · Well-Known Member

    Messages:
    57
    Likes Received:
    30
    Trophy Points:
    38
    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.
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook