• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Newly diagnosed Type 1 diabetes

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
L

Louise W

New Member
Relationship to Diabetes
Type 1
Hi I have very recently been diagnosed with type 1 diabetes at 51 years of age. I am getting to grips with it all reasonably well but I am really struggling with my eyesight which has been dreadful since a very nasty episode of DKA three weeks ago. I am very much aware that this is to be expected but I am just wondering how long I can expect before it starts to settle down. I have got my diabetic eye screening in two weeks and have been told not to go to my opticians in the meantime but my eyesight is making me even more miserable. Thanks.
 
Hi Louise - I was 22 and my eyes simply refused to focus properly for approx 6 weeks. My hobbies were knitting, sewing and reading and they hadn't invented daytime telly or the inter web net either yet. By eck, was I bloody well bored or what? Such a relief when I could go back to work - as a clerk where we hand wrote things to send to the typing pool .....

It's because the eyes change shape with high and higher BG, which you obviously had for a while before going into DKA, then also gradually change back again as your BG becomes better controlled - there is nowt really you can do to speed up the process (other than toe the line with your diabetes and eating/dosing) and I'm afraid you just have to be patient. {{{Hugs}}} cos it's a right PITA.
 
Hi Louise! I was a late diagnosis too (42 when I got the news). Shortly after diagnosis I was advised by my DSN to pop to the opticians. When I rang they hooked me up with the diabetes specialist on their team and he found that my eyesight had improved significantly from -4 to -1.5. "At last, some good news!" I thought. I was given new specs, but after about a month, my eyes had gradually headed back -4, which is where they have remained ever since. I do now need varifocals, which I didn't pre-diabetes. If you have your eye screening appointment in a couple of weeks it may be worth waiting - perhaps think very carefully about things like driving in the meantime!

Hope it all settles down - as @trophywench says it is one of the PITA that go with diabetes.
 
Aaargghh Matt ! - we always tell the newly diagnosed to try and wait 3 months before having a 'normal opticians eyesight test' - cos otherwise you stand to waste money buying specs that will be useless very soon.
 
They (Vision Express) were really good. They explained that my prescription had the potential to change and when it did they changed the lenses free of charge.
 
Hi and welcome from me too.
I was also a late starter a year and a half ago at 55yrs old.... day after my birthday!
Cheap £1 reading glasses for a few months were the answer for me, but I find my eyesight is still not as it was before and I had to have proper reading glasses when I had them tested. The optician said my distance sight was great but there are some days when I look up and see a double image of a bird flying across the sky and other days when it is very clear. I also find my near vision seems to vary a bit too even though my BG levels are now well managed.
 
trophywench said:
Aaargghh Matt ! - we always tell the newly diagnosed to try and wait 3 months before having a 'normal opticians eyesight test' - cos otherwise you stand to waste money buying specs that will be useless very soon.
Click to expand...
BUT I'm proof that its sometimes better not to listen to that statement as goodness knows how bad I would've ended up if I had listened to that xx
 
Yeah but you must have picked a sensible optician who identified you had a problem he couldn't deal with and got you seen by someone who could! - which is actually what they are supposed to do instead of selling you glasses which they're also supposed to know will soon be useless Kaylz. It's part of the normal training for opthalmic opticians for goodness sake.
 
Hi thank you everyone for your replies, they have really helped. You have confirmed what I knew but I just needed the reassurance particularly as my grandfather lost his sight after being diagnosed with later onset type 1 (I know treatments are more advanced now). I am back on the £1 glasses despite my optician previously warning me against them but I need some sanity. Thanks again.
 
Louise W said:
Hi thank you everyone for your replies, they have really helped. You have confirmed what I knew but I just needed the reassurance particularly as my grandfather lost his sight after being diagnosed with later onset type 1 (I know treatments are more advanced now). I am back on the £1 glasses despite my optician previously warning me against them but I need some sanity. Thanks again.
Click to expand...
Welcome to the forum @Louise W

Sorry to hear about your diagnosis. I was 53 at diagnosis with T1, and like you my eyes were very odd. I purchased new glasses just before my diagnosis, but the opticians replaced the lenses after things settled. They also asked me to wait for at least two months before being retested. I had returned to what I needed before so I just ended up with some free smart new glasses.

There is a lot to learn very quickly after diagnosis. What insulins are you using? It takes a bit of time for levels to settle down and you may well have some remaining Beta cells which after a rest will decide to play again so levels get a bit variable at the start. It is worth asking about a carb counting course which will teach you to make adjustments to your doses to match the amount of carbs you eat. I did a course called DAFNE but some CCGs offer other courses. It is very useful and makes life a lot more flexible.

Keep in touch and fire away with any questions that you have. Nothing is considered silly on here. JUst ask.
 
Hi thank you I will wait for my specialist eye appointment and try not to be too impatient! I am waiting for my specialist diabetic appointment at the end of this month and hope to do the DAFNE course as soon as I can as it is available in my area. I am using Levemir and NovoRapid and my levels haven't been too bad so far. It's just a lot to get your head around.
 
Louise W said:
and hope to do the DAFNE course as soon as I can as it is available in my area
Click to expand...

NICE recommends that should be offered 6-12 months after diagnosis (or whenever seems suitable after that, for people diagnosed a while ago). So not immediately after diagnosis, for some reason. Maybe because of the honeymoon phase or something, so it's more valuable to do the course after things have settled a little.
 
Welcome to the forum @Louise W

Hope your eyes settle promptly, and your DAFNE course comes through soon.

I think they are developing (or may have already launched?) an online version of DAFNE, which may help in the current circumstances. You would miss out on the group dynamic / discussions of course - but perhaps they will need to develop an virtual solution for those as well if face-to-face continues to be a challenge.

Alternatively... if you’d prefer online learning that you can do as and when it suits you, there is always the (free) BERTIE course which covers much the same content as DAFNE

Bertie Diabetes

www.bertieonline.org.uk www.bertieonline.org.uk
 
The 'Zoom' (other online apps are available LOL) version doesn't seem to have launched as yet.
 
trophywench said:
The 'Zoom' (other online apps are available LOL) version doesn't seem to have launched as yet.
Click to expand...

Well their website says the remote courses are happening. I imagine some groups are doing them and some aren't quite there yet. I haven't read any descriptions of what they do in place of the group discussions and things. Some group video sessions would seem like the obvious answer; that does all assume a level of computer access, but I guess that's unavoidable given where we are.
 
Bruce Stephens said:
Well their website says the remote courses are happening. I imagine some groups are doing them and some aren't quite there yet. I haven't read any descriptions of what they do in place of the group discussions and things. Some group video sessions would seem like the obvious answer; that does all assume a level of computer access, but I guess that's unavoidable given where we are.
Click to expand...
As with everything else it is different depending on area.
 
It said (ISTR) that 67 (?) centres had expressed an interest in doing it online so they are finding ways to enable this, but have not updated that on the website.
 
Louise W said:
It's just a lot to get your head around
Click to expand...
One book I found useful at the start was Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. Ignore the age reference (I was 53 at diagnosis) It explains things very clearly, offers practical advice and is regularly updated with the latest tech. It is easy to read, well referenced and indexed so good to dip into.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top