Recently diagnosed and a question :)

[MaximalG1]

Hello everyone, i was recently (well, just over a month ago now) with Type 1 Diabetes (at the age of 42). As I'm sure you can all imagine and understand/sympathise with, it came as something of a shock. No disrespect to anyone here, I won't rehash all the details/how long I'd been suffering before I got my diagnosis and began treatment, but I will say it's reassuring to know there are other people who know and understand my situation (as does the specialist at my local hospital who's been looking after me, as they have the condition as well)

I am noticing that my memory is still being affected from time to time, as I've been wearing glasses since I was 4 or 5, and ever since I started taking my insulin, it has affected my eyesight (something which my specialist said should return to normal in 5-6 weeks, and it's been just over 4 weeks since I was discharged my hospital). For anyone else who's been throught this (and so I don't keep forgetting to ask them to explain to me again why and how my eyesight has been affected) could someone explain to me in simple terms please?

Thank you, and hi again (and for anyone wondering about my profile picture and username, big Transformers fan here if it wasn't obvious, I've recently regained my love and passion for the franchise, it's helped me a lot since my diagnosis)

 

[mashedupmatt]

Hi @MaximalG1 and welcome to the forum - sorry you've had to join us (in a nice way) - a Type 1 Diabetes diagnosis in your forties is a big shock (I have first hand experience of this!) - High glucose can change fluid levels or cause swelling in the tissues of your eyes that help you to focus, causing blurred vision. This type of blurry vision is temporary and go away when your glucose level gets closer to normal so it will improve when your levels are stable - do you know what your HbA1c was when diagnosed?

 

[MaximalG1]

Hi @MaximalG1 and welcome to the forum - sorry you've had to join us (in a nice way) - a Type 1 Diabetes diagnosis in your forties is a big shock (I have first hand experience of this!) - High glucose can change fluid levels or cause swelling in the tissues of your eyes that help you to focus, causing blurred vision. This type of blurry vision is temporary and go away when your glucose level gets closer to normal so it will improve when your levels are stable - do you know what your HbA1c was when diagnosed?

Thank you, and that's okay, i got what you meant.
Tell me about it, as far as I'm aware, apart from a cousin (well, 2nd cousin/cousins daughter who's 16 and has Type 1 as well) I'm the first in my branch of the family to have it, though we suspect my late Nan (my Dads mum) might have had it too. Ah, that makes a lot of sense, and I'm still getting the hang of keeping them between 5 and 8 (i think?) at the moment, though having the Libre Link app and sensor on my arm, my specialist calls me at least once a week, and has adjusted my morning/pre-breakfast intake to help me avoid having lows during the daytime. And I'm afraid not, is there an easy way to find out?

 

[mashedupmatt]

It can be quite overwhelming to start with but I promise it does get easier - and don't get too concerned about the numbers at this stage - 5-8 is probably a target set by your healthcare team for before meals - others will have different targets thouugh - good that you have a Libre and fantastic that they are calling you once a week

And I'm afraid not, is there an easy way to find out?

You may be able to find this out on the NHS app if you have it - it's under "Test Results" in "GP Record" section on there - if it was particularly high when diagnosed that will probably be why your eyes were affected - which insulins are you using?

 

[MaximalG1]

It can be quite overwhelming to start with but I promise it does get easier - and don't get too concerned about the numbers at this stage - 5-8 is probably a target set by your healthcare team for before meals - others will have different targets thouugh - good that you have a Libre and fantastic that they are calling you once a week

You may be able to find this out on the NHS app if you have it - it's under "Test Results" in "GP Record" section on there - if it was particularly high when diagnosed that will probably be why your eyes were affected - which insulins are you using?

Oh yeah it is, my specialist is fantastic, I really can't fault him. It may well have been, without wanting to go into too much detail, it all kicked off (as far as I can tell and from what my specialist thinks) on Halloween last year (there's irony for you) and the Doctors etc I saw at my local surgery completely missed the signs/symptoms. I'm on Novomix, 11ml before Breakfast and 13ml before my evening meal/dinner.

 

[mashedupmatt]

Great to hear about such a positive experience with your specialist healthcare team - I don't have any experience personally of Novomix, but I know some others on the forum have - if you have any questions please feel free to post them - there is literally decades of lived experience on this forum, and we are all here to help each other - nothing is considered "Silly" here

 

[MaximalG1]

Great to hear about such a positive experience with your specialist healthcare team - I don't have any experience personally of Novomix, but I know some others on the forum have - if you have any questions please feel free to post them - there is literally decades of lived experience on this forum, and we are all here to help each other - nothing is considered "Silly" here

Oh yeah, that's helped me loads. Even if my specialist had 15-20 years of experience and training, I'd of done what they said because of all that, but as they have the condition themselves, I respect and listen to what they say even more because they've been where I've been, and in a time where apps and sensors didn't exist. I'm doing my best to plan ahead for future events, such as a convention I'll be attending at a hotel in August, so i've e-mailed them to see if i can have a mini fridge in my room, and if there will be a charge as it's for medical reasons. And thanks for that, I'm fairly lucky as I have friends and family members who have personal experience with other friends/family who have Type 1, so my support network is and has been amazing, I'll just be glad when my eyesight returns to normal, all this time off work and aside from watching stuff on Youtube to help pass the time, or "watching" tv shows or movies I've watched before (so i know what's going on/don't have to worry about missing something) I've not really been able to do much else, reading books or comics hasn't been feasible, and it's one of my main hobbies, there's irony for you! 😉

 

[Leadinglights]

There is obviously quite a bit to get your head around initially and your consultant will probably want to be cautious about bringing your levels down as there can be side effects of that, in particular with eyes and nerves. When blood glucose is high it has often happened gradually and your brain adapts to the change in the environment of your eyes from the normal salty to sugary which changes the shape of the eye and thus the focus, but when blood glucose drops quickly the environment changes back to the more normal salty so the shape changes again hence everything being out of focus. It should settle down in a few weeks so don't go rushing out to get glasses until it has done so.
At the moment you are on quite an inflexible insulin regime with a mixed slow and fast acting which will require you to eat a specific amount of carbs but hopefully you will soon be transferred to a more usual regime of a slow acting basal which works over the day and night and a separate bolus fast acting insulin to cope with the carbohydrates in your meals.

 

[MaximalG1]

There is obviously quite a bit to get your head around initially and your consultant will probably want to be cautious about bringing your levels down as there can be side effects of that, in particular with eyes and nerves. When blood glucose is high it has often happened gradually and your brain adapts to the change in the environment of your eyes from the normal salty to sugary which changes the shape of the eye and thus the focus, but when blood glucose drops quickly the environment changes back to the more normal salty so the shape changes again hence everything being out of focus. It should settle down in a few weeks so don't go rushing out to get glasses until it has done so.
At the moment you are on quite an inflexible insulin regime with a mixed slow and fast acting which will require you to eat a specific amount of carbs but hopefully you will soon be transferred to a more usual regime of a slow acting basal which works over the day and night and a separate bolus fast acting insulin to cope with the carbohydrates in your meals.

Oh yeah, they made sure to point out that i should wait until they sort themselves out, and wait until at least April before getting them checked (somewhat ironically, I got my eyes tested 10 days before the day I suspect my Pancreas packed up on me lol) and I got my new/current glasses about a month later, so when I do go back and they ask why I'm back a lot sooner than I should have my eyes checked again, I'll explain about my diagnosis and why I'm having them rechecked.
Yeah, hopefully it won't be much longer before my intake levels/dosages are more regular. Thanks for your detailed reply and explanation, I really appreciate it 🙂

 

[everydayupsanddowns]

Interesting that you’ve been put on a mixed insulin to start with. That was a common tactic in the 1990s (when I was diagnosed), but I think the evidence suggests getting newly diagnosed people with T1 onto a fully flexible basal:bolus system as soon as possible helps them manage their glucose levels more easily.

One of the challenges with a premixed insulin, is that once the dose is ‘in’ you are pretty much committed to it’s schedule, and have to feed it what it wants, when it wants, in terms of carbohydrate.

Separating out the ‘background’ (basal) insulin to cope with glucose from the liver, and a shorter/more rapid acting mealtime (bolus) insulin to cover the carbs in meals frees you up to eat (or not eat) meals of different sizes as and when you want to, by adjusting the meal doses to match what you are eating.

It involves more injections in a day, but has substantial benefits in terms of flexibility and adaptability.

Might be worth asking your consultant about moving to that system?

 

[Kol]

Oh yeah, they made sure to point out that i should wait until they sort themselves out, and wait until at least April before getting them checked (somewhat ironically, I got my eyes tested 10 days before the day I suspect my Pancreas packed up on me lol) and I got my new/current glasses about a month later, so when I do go back and they ask why I'm back a lot sooner than I should have my eyes checked again, I'll explain about my diagnosis and why I'm having them rechecked.
Yeah, hopefully it won't be much longer before my intake levels/dosages are more regular. Thanks for your detailed reply and explanation, I really appreciate it 🙂

I and probably others used the cheap reading glasses of different strengths until eyes settled down, should help for close up stuff.

 

[Kol]

Oh yeah, that's helped me loads. Even if my specialist had 15-20 years of experience and training, I'd of done what they said because of all that, but as they have the condition themselves, I respect and listen to what they say even more because they've been where I've been, and in a time where apps and sensors didn't exist. I'm doing my best to plan ahead for future events, such as a convention I'll be attending at a hotel in August, so i've e-mailed them to see if i can have a mini fridge in my room, and if there will be a charge as it's for medical reasons. And thanks for that, I'm fairly lucky as I have friends and family members who have personal experience with other friends/family who have Type 1, so my support network is and has been amazing, I'll just be glad when my eyesight returns to normal, all this time off work and aside from watching stuff on Youtube to help pass the time, or "watching" tv shows or movies I've watched before (so i know what's going on/don't have to worry about missing something) I've not really been able to do much else, reading books or comics hasn't been feasible, and it's one of my main hobbies, there's irony for you! 😉

If the fridge is for insulin then it is not normally needed, as is ok for around 28 day's out of fridge once 'opened' and doesn't go back in after.

 

[helli]

If the fridge is for insulin then it is not normally needed, as is ok for around 28 day's out of fridge once 'opened' and doesn't go back in after.

I would go as far as avoiding using fridges in hotels as they can be unreliable. There are horror stories of hotel fridges freezing (and killing) insulin.
@MaximalG1 if you are going somewhere hot, I recommend Frio for keeping insulin in when out and about.
I bought mine nearly 20 years ago and they still work when I go somewhere hotter than UK.

 

[MaximalG1]

Interesting that you’ve been put on a mixed insulin to start with. That was a common tactic in the 1990s (when I was diagnosed), but I think the evidence suggests getting newly diagnosed people with T1 onto a fully flexible basal:bolus system as soon as possible helps them manage their glucose levels more easily.

One of the challenges with a premixed insulin, is that once the dose is ‘in’ you are pretty much committed to it’s schedule, and have to feed it what it wants, when it wants, in terms of carbohydrate.

Separating out the ‘background’ (basal) insulin to cope with glucose from the liver, and a shorter/more rapid acting mealtime (bolus) insulin to cover the carbs in meals frees you up to eat (or not eat) meals of different sizes as and when you want to, by adjusting the meal doses to match what you are eating.

It involves more injections in a day, but has substantial benefits in terms of flexibility and adaptability.

Might be worth asking your consultant about moving to that system?

I'll keep that in mind, I think because I'd lost weight before my diagnosis and treatment, they want me to build that back up first (I'm meant to see them next week, so I've asked to be weighed then) and luckily I've only got to take it 10-15 minutes before my breakfast and evening meal.

 

[MaximalG1]

I and probably others used the cheap reading glasses of different strengths until eyes settled down, should help for close up stuff.

I'll bear that in mind, thanks for the suggestion 🙂

 

[MaximalG1]

I would go as far as avoiding using fridges in hotels as they can be unreliable. There are horror stories of hotel fridges freezing (and killing) insulin.
@MaximalG1 if you are going somewhere hot, I recommend Frio for keeping insulin in when out and about.
I bought mine nearly 20 years ago and they still work when I go somewhere hotter than UK.

Thanks for the warning, though depending on how much I've got in one pen, I'll more than likely have another that's been taken out of the fridge and it'll last me while I'm at the hotel anyway 🙂