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Diabetes Retinopathy

Discussion in 'Diabetes Discussions' started by JCBBFC27, May 11, 2020.

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  1. JCBBFC27

    JCBBFC27 Type 1 · Member

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    Hi, it's just had me abit down the last few days thinking of a complication like Retinopathy, I have been a type 1 for 9 years now and one year had background but went back to normal the year after. My blood sugars have been up and down over the years but I have good control now. I just wanted to ask about people's experiences with Retinopathy and is it as bad as I'm making it out to be after reading too much about it.
     
  2. JohnEGreen

    JohnEGreen Other · Master

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    Once my blood sugar control improved after two screening with background Retinopathy my last two screenings have not shown any sign of it. But not being T1 I should defer to T1's who I am sure will be along soon to advise you.
     
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  3. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @JCBBFC27 I first had signs of retinopathy in 1978.Between then and 1983 I had more than one laser treatment to each eye. The picture in my avatar is what you get! The glasses round my neck are cheap reading glasses! That is after 54 years as a Type 1. Good control is what saved any further serious damage. I wish you the very best.
     
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  4. Marc the Unruly

    Marc the Unruly Type 2 · Member

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    I had poor control for a long time and have had laser all around both eyes in 2014. Eyes remained mostly stable since then. I have vastly improved my control in the last 6 months and last check in March said eyes VERY stable.

    The surgery was NOT a fun experience.

    However there was an upside. because I might have lost my drivers licence afterwards, I took a 2 week driving trip from New York to Florida and took my Subaru to the Nurburgring. :)

    Regards

    Mark
     
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  5. Amz1

    Amz1 · Newbie

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    Wow that's a long time for being a type 1 dIabetic, i was diagnosed in 2017 am in my early 30s and have been down thinking about the future.
     
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  6. JCBBFC27

    JCBBFC27 Type 1 · Member

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    Thankyou all for your positive replies! Mines nothing yet my blood sugars have mostly been good apart from 3 years of bad blood sugars back in college but it was all on my mind, it's good to talk about it I feel
     
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  7. Grant_Vicat

    Grant_Vicat Don't have diabetes · Well-Known Member

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    Hi @Amz1 In many ways I was in a better position, ridiculous as that sounds! Because I was eleven months old at diagnosis, I hadn't experienced 'real life'. To be dished this card out at your stage in life is a seriously affecting punch. I can fully understand your feelings. There were many times in my twenties and beyond when I would get so down that I would walk out of a really good film or buy loads of recordings, take them home and then not have the mental strength to listen to one. Many of these down periods would be after receiving unwelcome news from the renal department at King's College or when my blood sugars went haywire for no apparent reason (probably under germ attack). But I realised that when my regime was at its best, my mind would be similar. As others all over the forum have said, you are entitled to grieve, but also try and focus on what you can do with your life. Although I am trapped at home (solid transplant recipient) indefinitely, I am still able to do so much that I never dreamt I would do back in 1979, when I had my first eye haemhorrage. I was very badly controlled then, but learnt very quickly that if I didn't heed the advice at King's, I wouldn't be here now! The very best of luck to you!
     
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  8. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

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    Hi and firstly I understand your fear of retinopathy as it is a cause of blindness/sight loss.
    I had had type 1 for 20 years with up and down control in my teens and 20s, before I had some background changes in my blood vessels. These were treated with a laser which was uncomfortable and a nuisance (I could not drive for a few hours after each treatment). Bottom line is that when I was pregnant and in the chaos of having a premie newborn, my retinopathy ran amok and the laser treatments did not prevent haemorrages in both eyes resulting in almost total blindness.
    It was very scary as I had a 1 year old child, could not drive and had people sending me leaflets on getting a guide dog!
    I went on to have a vitrectomy in both eyes to 'seal off' the bleeding vessels and recovered in a prone position for 6 weeks with a gas bubble to keep the eye stable. This was not easy but the surgeries were very successful and my sight has been stable for the last 16 years. My sight is damaged but I can use my phone and drive a bike if not a car. I struggle with certain font sizes but most people are surprised to hear that I have a visual impairment.
    I think I was pretty unlucky as I understand that for most people retinoptathy develops slowly hence going to your annual checks is important and also that usually treatment by laser works.
    I hope you have the tools such as fsl to help you get great 'time in range' results; as we all know a good hba1c can mask swings in blood sugars and its this variability which is damaging to our micro vessels in our kidneys and eyes!
     
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  9. chris2112

    chris2112 · Newbie

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    Hi. I'm not a diabetic sufferer, although my nan (T1) and dad (T2) were. I'm an (mature) optometry student about to take final exams (at some pint with all that going on in the world).

    I though I'd offer some help/advice if needed around the topic of Diabetic Retinopathy (DR).

    Diabetes is a large portion of our degree as, as you can imagine it's a large part of what we are looking for when we observe the back of a patients eyes. Diabetic Retinopathy is a topic thats very interesting to me due to the family ties and also as it's an area of work where the correct observation, advice and action can benefit patients immensely and have a very positive outcome for their vision and life moving forward. It's an area I wish to take further education and qualification in, to become more specialised in, so I am able to offer greater help to the community and to support the NHS as the inevitable changes occur over the next few months and years.

    The crucial part is that you keep your regular screening appointments. The is because visual symptoms generally only occur later on. Diabetic Retinopathy is avoidable if everything is reviewed and spotted early.

    I guess it's the easiest thing in the world to say but if the blood/sugar levels are kept in order, then that really is a large part of preventing it's progress. DR is a progressive disease so if you have a little background DR it DOESN'T MEAN IT WILL ALWAYS progress to more severe forms. Generally progression is slow but it can happen relatively quickly if someone is very unlucky.

    Treatment is A LOT more effective these days - anti VEGF injections (ocular) are more effective than laser surgery and do not have the side effect of damaging any healthy retinal cells. An injection into the eye always sounds horrific but the eye would have anaesthetic applied (via a drop of medication onto the eye) so the patient is barely aware of any sensation/feeling on eyes after that.

    So the important part is that the retinal screening is attended (chase them up for appointments if you ever become overdue). Also important to still have your regular eye examinations at the opticians - routine eye examinations are free to diabetics. The retinal screening is focused on the retina. The Optometrist will look at other areas of the eye also including checking for any cataract presence, checking the pressure in the eye and visual fields, amongst other things.

    Hope this helps with understanding the disease progression (or hopefully non progression).
     
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