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Type 1, 25 with DME worried about blindness

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SamD1994

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21
Hi everyone, new member here .

Like the title says I'm 25 , type 1 and been a diabetic since I was 8. I have never been the best diabetic but not the worst, I got my act together a bit more in my late teens. I never drink alcohol or do drugs but taking the right amount of insulin was an issue especially correction doses (I'm on carb count diet) and eating food like pizza and other takeaways on weekends.

Whilst I have stopped all that , the last year I had several laser sessions to stop maculopathy in my right eye , I had a session last month , but booked an appointment last Friday with eye infirm as I noticed my sight in right eye getting blurry, mornings it be all blur and sometimes looking outside the window where it's bright i couldnt focus on anything it be blown out then later in the day things would settle when everything was just slightly out of focus , turns out I had a haemorrhage and have been given an eye injections and need 4 more. The doctor was hesitant about giving me them.at first cause he said "my vision was So good " even though I told him about the blurriness but he gave me the injections because if the swelling that has suddenly happened over a month despite blood sugars improving
My blood sugars have improved a lot due to all the anxiety
But I'm terrified this is beginning of the end and I'm going to go blind within months or years and not be able to do anything like cinema, photography , read , video games or drive .
I guess I'm looking for other people's experience and some reassurance, since the injection though only 2 days I'd say the eye can focus a lot better and doesn't get blown out anymore though reading some small print can be still blurred and isn't as good in the dark as my good eye, it got me stressed to the point where im not doing videography , drawing or any if my hobbies . I keep closing my good eye and testing what is in foxusnwith my badneye all throughout the day and I also just got dumped by my first eve long term (3 year) gf after she cheated on me with a friend and moved in with him.
So life seems it going very downhill fast and anxiety and stress is through the roof. My Hba1c is currently 86 and seems to have stayed around this number for several years

Apologies for long post
 
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Afternoon and welcome! Sorry to hear you’re going through this, I understand your fear - losing eyesight is one of my biggest worries. What sort of insulin and testing regime are you on?

I had a deterioration after my last eye scan, which terrified me - but I’ve managed to reverse the damage back to “background” by really getting my levels down to normal - have a search for the thread I started on it, called “healed eyes”.
 
Hi Mel, that's excellent about your eyes! I'm glad you were able to Battle it and come out on top.
I'm on a fast acting (novarapid) and long acting (treshiba) insulin and ibtest my blood sugar between 6-8 times a day
 
I assume that after having it so long you’re pretty comfortable with adjusting doses and carb counting etc? I’ve found that once you get your basal Tresiba set right, you’ve got a really solid foundation for your meals and Novorapid- have you done basal testing? This method worked well for me, it’s for pumps and injections - https://mysugr.com/basal-rate-testing/

Is there a possibility you could get a Libre or CGM to give you a better picture of how your levels are behaving throughout the day? It’s really helped me get to grips with mine.
 
Hi @SamD1994 ,

Welcome to the forum.

I got diagnosed with macula edema a couple of years ago. Ironically after tidying up my D act..
The trick is. Don't go at it like a bull at a gate with the A1c improvement. Think of it like a steady "decompression?" Whilst improving the numbers..

What "anti VEGFs" are they giving you for the ME.?

OK. So here is some comfort for you.
I've been diabetic since my 8th birthday, had a bit of a rock & roll lifestyle at your age. & am now headbutting 51. Officially, I am discharged from the treatment however attend regular monitoring for any recurrence..
I still do what I love. Music & Jap import vehicles..

Best wishes.
 
Hi, thanks for your comment !

This is something I seen on various forums about losing your HB but not straight away and I'm confused how to do this.

At the moment I'm just taking the doses my machine tells me and if I'm on a 10.0 or 12.0 reading and not about to eat I usually leave it admit gives me some drop time , I do this especially if I'm at work or about to go to the gym.

I'm being treated with Eyelea injections .

I hope you don't mind me asking but how is your vision After treatment and settling you bg levels down?
 
Hi @SamD1994 and welcome. I completely empathise. In 1979, I had my first laser treatment at the age of nearly 21, after nearly 20 years of Type1. That same year my girlfriend (now my daughter's godmother), dumped me. By 1983, at the age of 25, I had had both eyes lasered more than once. The powers that be at King's College Hospital impressed on me that good stable control was the only way to halt or slow down the problem. I still drive, do portraits, play the organ and only wear reading glasses. I had a pancreas/kidney transplant in 2013 and am well looked after by the NHS. I hope your next 25 years are at least as successful if not better. The best of luck!
 
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SamD1994 said:
Hi Mel, that's excellent about your eyes! I'm glad you were able to Battle it and come out on top.
I'm on a fast acting (novarapid) and long acting (treshiba) insulin and ibtest my blood sugar between 6-8 times a day
Click to expand...
I do wear glasses, as I’ve been shortsighted since I was a kid - and I’ve added bifocals into the mix now for close up work as I’m ancient. But I have recently passed the enhanced eye test for a class 2 bus/lorry driving licence There is hope, but don’t drop your levels too fast, as it can make damage worse - slow and steady wins the race here.
 

Hi,

Yep, I read the the A1c fast drop issue causing eye problems after I was being congratulated for the managment & had already started the anti VEGF.
At the time, even with corrective vision. (Reading glasses.) I was using accessibility on my devices with the close up stuff?
& even using my mobile phone as a magnifying glass for fine printed documents at work.

Yep they started me on a course of Lucentis, then Eyelea.

Well? I've always worn prescription lenses since I was a kid, when I hit 40 it was reading glasses time for the close work.
Though I can (as I always have.) function perfectly well without them for gigs.
Fed up with switching lenses, I've discovered recently the joys of "varyfocal."
So much so I got a some safety work glasses made up too?

I looked at it this way. No point in investing in a high definition TV if your vision isn't there to appreciate it? Same with the glasses. It's never worth doing an eye test if hypo for instance. As with Macula edema, I made sure I had the thumbs up from the consultants before choosing the frames.

My vision now has certainly improved.. I don't need any functions on devices for the visually impaired or zoom in on any fonts..

Edit; just found this for you. (I remembered reading it over a week ago.) you may find this encouraging..? https://www.diabetes.co.uk/forum/th...rms-of-diabetic-retinopathy-in-the-us.164780/
 
Hi Grant, thank you for the good wishes and of course I wish all the best back for yourself and future. I can't imagine what you went through so congrats on making it bud! How is your vision now would you say?
I thought it was worth mentioning the girlfriend scenario not cause i want pity but the stress of what is happening one after another which of course impacts diabetes .

I never had a girlfriend before and she was my first , last.3 years and dumped me August, during the immediate aftermath I did go off the rails and would have the odd chocolate bar or two and have a "f**k it" attitude cause of the depression , comfort eating I guess. It's nice to see from yours and others comments that there is hope though, it all means so much
 
How do you drop your levels steady? Atm I'm getting single numbers around 6-8.0 which is really good for me as I'm usually around 12 or higher!
If I do more damage can that be repaired?

I'm not sure how to steady lower blood sugars, as atm I'm just taking the right insulin and getting good results but if it going to do damage...??
 
Hi Sam I am a T2 and a lot older than you but since my dx 18 months ago I have really worked on getting my A1c down but started getting the blurriness you describe 6 months ago after a haemmorage (branch retinal occlusion). A couple of weeks ago I had my first in a course of Lucentis injections and it has certainly improvedthings after just one. I am not sure these injections were available years ago so just wanted to say I take comfort from the fact there are now more options to save your sight. I wish you well, try not to worry, it really doesnt help.
 
My long-sightedness is still excellent. I have slight scarring from early laser work, which only really hinders when trying to look at e.g. planes flying across a bright sky. I always wear those things which are round my neck in my avatar for reading! I knew you weren't looking for sympathy, but I was at my unhealthiest when my girlfriend called it off, and I entirely agree that the mental downer has an adverse effect on control. Once you are stable I am sure good things will come your way. All the best.
 
My eyes got temporarily worse in the year after I dropped from an HbA1c of 89 to 50 in the space of three months - that was picked up at my routine scan and I was referred for more detailed scans and possible treatments. However, by the time I went to that appointment, maybe two months later, the damage was undetectable and I was back to “mild background”. I also took vitamin d supplements as they are shown to help with eye health.
 

I had a look online to see if there was anything about this - I've recently been diagnosed as Type 2 and my blood sugar levels went down substantially with a low carb diet, so retinopathy is something I had been meaning to look at. There is a 2017 study reported here:

https://bmcendocrdisord.biomedcentral.com/articles/10.1186/s12902-017-0213-3

- and this said that despite the temporary worsening for 6-12 months, intensive and prompt action on blood sugar levels resulted in much better outcomes after two years, essentially reversing the temporary blip completely. It sounds like you are doing all the right things at the moment.
 
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