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Retinopathy. First signs. SO SCARED

Discussion in 'Diabetes Complications' started by Emsy2297, Jul 10, 2021.

  1. Emsy2297

    Emsy2297 · Member

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    Hello.

    So I’m 24 years old, been a type one since I was ten. My diabetes journey sure has been a bit of a rollercoaster but each year I go to my eye screening appointment and the results come back no changes no worries apart from the last two years or so. Still a shock but nothing to worry about the letter stated slight changes no treatment required. Yesterday I got the letter saying I now have sight threatening retinopathy and I’m being referred to an ophthalmology hospital local to me to discuss possible treatment.

    I am absolutely terrified. The thought of anything wrong with my eyes is scary. The thought of any treatment seems even scarier. I’m 24. I feel like this is now it for me. I don’t know it’s hard to put in to words. I was totally of guard when opening this letter.


    Is anyone able to offer any experiences? Any wisdom anything that maybe could comfort me while you waiting for this referral or even some home truths. I just would really like to get a bit more understanding from people who have been there rather than DR Google.

    Thank you
     
  2. Jaylee

    Jaylee Type 1 · Moderator
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    Hi @Emsy2297 ,

    OK, I was diagnosed with a macula oedema a few years back. Never heard of it always focused on the retinopathy, so it was a bit of a kick in the teeth after getting an all clear on the ret?

    It's easy for anyone to say "don't panic." We all handle stress differently.

    Managing BGs is key..
    Don't take your recent corespondence from the eye people as a kick to action a "short sharp shock" with your diabetes. Change it slow.
    It could do more harm than good to your eyes otherwise.. (A bit like "decompression?)
    Pretty much how I unwittingly got into my pickle in the first place..?

    Having said all that. With my experience. There are some pretty good advances in treatment.

    & the opthamology department I found were companionate, professional & pretty talented.

    Best wishes,

    Jay.
     
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  3. jaywak

    jaywak Type 1 · Well-Known Member

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    I had the same letter must be about 10 - 15 years ago I never had or needed any treatment and ever since I always get a letter after screening to say my eyes are fine , They do make mistakes so keep your fingers crossed !
     
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  4. Dark Horse

    Dark Horse · Well-Known Member

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    Try not to worry too much. The whole purpose of screening is to pick up sight-threatening changes at an early stage when they are very treatable. Depending on what is found at your hospital appointment you may not even need treatment at this stage. Use your worry to make sure you get to all the appointments you are offered and to work on good diabetic control. (But if your blood glucose levels have been high for a while, it's probably best to lower them gradually, as @Jaylee suggests.)

    Take comfort from knowing you will seen by a highly qualified, expert team who are dedicated to preventing sight loss.
     
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  5. Jaylee

    Jaylee Type 1 · Moderator
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    Hi again,

    I'll also tag in @himtoo , who has had some experience with it all.. :)
     
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  6. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @Emsy2297 In a nutshell, I had laser treatment in 1979-1983 in both eyes. Like you I was terrified, both at the thought of burning pain and invasive treatment to my eyes. I was 'pleasantly' surprised - nothing like Goldfinger! As others above have said careful control of blood sugar is important, but don't panic about blips. You might never have to go for treatment. If it's any consolation I still drive, read and have had no treatment since despite alarming letters from the eye screening service on several occasions. Good luck!
     
  7. himtoo

    himtoo Type 1 · Well-Known Member
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    Hi @Emsy2297
    just as a starting point the letters that are issued are a scandal .... they are so badly worded and put a lot of fear in when there is no need .......what has happened is at your screening a technician will have seen some changes in your eye which prompts a generic letter to be sent out ...you should receive an appointment to go to your hospital opthalmology dept .... they will put drops in your eyes to enlarge the pupils and an opthalmologist will examine the backs of your eyes.

    i first had this letter back in 1990 after i had been diagnosed for about 18 years as type 1............for 12 years at twice per year visits i attended to be told no intervention was needed...... then in 2002 i had my first laser treatment and yes i was terrified , but it was not painful at all and it is more the thought of it being bad than the reality...................
     
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