Newly diagnosed type 1

[Kirstylou911]

Hey!
Newly diagnosed type 1, was going to doctors nearly every week for about 2 months kept getting told I had vertigo! Then ended up waking up in icu lucky to be alive. Still trying to get my head around everything so any advice will be really helpful! How did you cope with it all being diagnosed?

 

[Northerner]

Hey!
Newly diagnosed type 1, was going to doctors nearly every week for about 2 months kept getting told I had vertigo! Then ended up waking up in icu lucky to be alive. Still trying to get my head around everything so any advice will be really helpful! How did you cope with it all being diagnosed?

Hi Kirstylou, welcome to the forum 🙂 Very sorry to hear about your diagnosis - particularly sorry to hear you had such a difficult journey to the diagnosis, what on Earth were they playing at? It sounds like they weren't testing your blood sugar levels!

It can be a bit shock, and there is an awful lot to take in to begin with, but it does get easier 🙂 Just be careful to write down the results of allyour insulin doses and fingerprick tests in a blood sugar diary and eventually you will begin to see patterns that will help you understand how to manage things better. Much of this is leaned through experience, so always be prepared with some fast-acting sugar to hand (my niece laughed yesterday when she noticed I have a jar of jelly babies in every room of the house ).

One of the best things you can do is get hold of a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas. It is an excellent book which covers all aspects of living with Type 1 diabetes, and is relevant whatever your age, so don't be put off by the title! 🙂

What insulin are you using? Are you in regular contact with your healthcare team? Please let us know if there are any questions or concerns you may have and we will be very happy to help 🙂

 

[khskel]

It's all a bit much in the beginning isn't it.

Things will settle down and you will get into the swing of things.

 

[Kirstylou911]

Thank you I try and avoid my gp now but I have a good support next work I see my dsn every 2 weeks my bs are a bit up and down still trying to find that balance lol and I'm on humilin m3 recently changed twice a day it was a massive shock to the system I was healthy before this happened currently have damaged nerves in my foot been off work just over 2 months due to this but I'm under neurology so hopefully most of the feeling will come back

 

[KARNAK]

Hi @Kirstylou911 🙂. Welcome to the forum, lot`s to take on board but keep in
contact with the forum and you will learn as you go. Take care😉.

 

[Northerner]

Thank you I try and avoid my gp now but I have a good support next work I see my dsn every 2 weeks my bs are a bit up and down still trying to find that balance lol and I'm on humilin m3 recently changed twice a day it was a massive shock to the system I was healthy before this happened currently have damaged nerves in my foot been off work just over 2 months due to this but I'm under neurology so hopefully most of the feeling will come back

There's something that you can do to improve your situation, and that would be to move off the humilin m3 and start using a system of injections called 'MDI' (Multiple Daily Injections), also known as 'basal/bolus'. With basal/bolus you inject a long-acting insulin (the 'basal') once or twice a day, and then inject a fast-acting insulin (the 'bolus') at mealtimes, so usually 3 times a day. The basal insulin is there because your liver constantly trickles out glucose in order to provide energy to keep your heart, lungs, digestive system etc. working when you are not getting the energy from food. The bolus insulin doses can be 'matched' to the amount of carbohydrates in your meals, meaning you have much more flexibility over what you eat, and when, and you can even miss meals as you would simply not inject and bolus.

Humilin m3 is a mixture of both types of insulin, both slow and fast-acting. Because of this, once you have injected it then you HAVE to eat the right amount of carbohydrates, at certain times, otherwise your blood sugar levels may go either high or low. As such, it is very restrictive, and you can't easily alter the doses e.g. if you wanted to eat more than usual, because you would also be increasing the amount of slow-acting which may then be more than you need! This is known as 'eating to the insulin' - your insulin doses and timings will dictate your meals and when you eat

I hope I've explained that clearly enough, but please ask if you are not sure what I mean by any of this 🙂 Do speak to your DSN about basal/bolus. Although ti does mean a few more injections it will really help you with your blood sugar control and give you the flexibility to live your life as YOU please, not dictated to you by the diabetes! 🙂 I appreciate that this may be a lot of new information to take in right now, but I started on basal/bolus and am very glad I never had to use a mixed insulin, which is not the preferred treatment these days.

I understand the feelings of shock, from being healthy to all this happening - I was due to fly off to Stockholm to run a marathon the week I was diagnosed! 😱 Needless to say, I didn't run the marathon, but I have learned to manage my diabetes well and have successfully run many hundreds of miles since my diagnosis, so it doesn't have to stand in your way 🙂

 

[HOBIE]

Welcome Kirstylou911. Are you into Posh cars ? 😉. I was 3 & cant remember that long ago. Good luck 😉

 

[Flower]

Hello Kiirstylou and welcome, glad you found us 🙂 - sorry you had to find us though!

I'm sorry you had such a frightening time getting diagnosed and waking up in ICU

I hope you are able to move on to basal bolus insulin as soon as possible as that makes managing life better with so much more flexibility on what and when you eat. The book that Northerner mentioned is such a good source of information as is this forum 🙂 Keep records of everything, insulin, food, blood sugar results- there are some apps such as mySugr which you can use to record information.

Take it all slowly as it is a big shock with no gentle introduction. Hopefully the nerve damage in your foot will improve, your body has been struggling for energy with a rapidly declining insulin supply and high glucose levels which cause turmoil. It does take a while for things to get back to equilibrium so take baby steps and treat yourself gently. I wish you well. 🙂

 

[Kirstylou911]

There's something that you can do to improve your situation, and that would be to move off the humilin m3 and start using a system of injections called 'MDI' (Multiple Daily Injections), also known as 'basal/bolus'. With basal/bolus you inject a long-acting insulin (the 'basal') once or twice a day, and then inject a fast-acting insulin (the 'bolus') at mealtimes, so usually 3 times a day. The basal insulin is there because your liver constantly trickles out glucose in order to provide energy to keep your heart, lungs, digestive system etc. working when you are not getting the energy from food. The bolus insulin doses can be 'matched' to the amount of carbohydrates in your meals, meaning you have much more flexibility over what you eat, and when, and you can even miss meals as you would simply not inject and bolus.

Humilin m3 is a mixture of both types of insulin, both slow and fast-acting. Because of this, once you have injected it then you HAVE to eat the right amount of carbohydrates, at certain times, otherwise your blood sugar levels may go either high or low. As such, it is very restrictive, and you can't easily alter the doses e.g. if you wanted to eat more than usual, because you would also be increasing the amount of slow-acting which may then be more than you need! This is known as 'eating to the insulin' - your insulin doses and timings will dictate your meals and when you eat

I hope I've explained that clearly enough, but please ask if you are not sure what I mean by any of this 🙂 Do speak to your DSN about basal/bolus. Although ti does mean a few more injections it will really help you with your blood sugar control and give you the flexibility to live your life as YOU please, not dictated to you by the diabetes! 🙂 I appreciate that this may be a lot of new information to take in right now, but I started on basal/bolus and am very glad I never had to use a mixed insulin, which is not the preferred treatment these days.

I understand the feelings of shock, from being healthy to all this happening - I was due to fly off to Stockholm to run a marathon the week I was diagnosed! 😱 Needless to say, I didn't run the marathon, but I have learned to manage my diabetes well and have successfully run many hundreds of miles since my diagnosis, so it doesn't have to stand in your way 🙂

Thank you for all that info my DSN only told me to take the m3 then eat didn't say anything about right amount of carbs or anything we're still trying to get it under control atm but I will ask about bolus at my next app see what she says I was originally on humilin I I think just take 2 doses a day same on the m3 don't even know how many carbs and that I'm allowed a day I do try to be careful

 

[Kirstylou911]

Hello Kiirstylou and welcome, glad you found us 🙂 - sorry you had to find us though!

I'm sorry you had such a frightening time getting diagnosed and waking up in ICU

I hope you are able to move on to basal bolus insulin as soon as possible as that makes managing life better with so much more flexibility on what and when you eat. The book that Northerner mentioned is such a good source of information as is this forum 🙂 Keep records of everything, insulin, food, blood sugar results- there are some apps such as mySugr which you can use to record information.

Take it all slowly as it is a big shock with no gentle introduction. Hopefully the nerve damage in your foot will improve, your body has been struggling for energy with a rapidly declining insulin supply and high glucose levels which cause turmoil. It does take a while for things to get back to equilibrium so take baby steps and treat yourself gently. I wish you well. 🙂

Thank you I'm glad I've found this seems to be a lot of support what I need right now not many of my friends know much about t1 either so we're all learning lol just taking 1 day at a time hoping my blood sugars are nice to me luckily I've not experienced hypo or hyper yet but scared when I do tho lol trying to get back into work have to wait for meetings boss is a bit worried about me going back with my dead foot haha

 

[Kirstylou911]

Welcome Kirstylou911. Are you into Posh cars ? 😉. I was 3 & cant remember that long ago. Good luck 😉

Thank you! I don't know much about cars except they have wheels and go brum brum haha

 

[HOBIE]

Its me. I am a nutter on cars. What's the 911 for. I was thinking of Porche 911. Fast one 😎

 

[Kirstylou911]

Just seem to alway put 911 no idea why haha

 

[Matt Cycle]

Hi Kirsty and welcome to the forum. 🙂 Agree with the others that basal/bolus is the way to go. I thought the advice was that all T1's were started on it, obviously not! Humulin I is an intermediate acting insulin and as Northerner says M3 is a mixed insulin. It could be you are in what's called the 'honeymoon' period - an inappropriate name but it's where your pancreas is still producing some insulin. Even if you are, most would agree basal/bolus is the best way of managing it.

Diagnosis is a big shock but try not to worry about it too much as you'll soon get the hang of it all. 🙂

 

[Kirstylou911]

Hi Kirsty and welcome to the forum. 🙂 Agree with the others that basal/bolus is the way to go. I thought the advice was that all T1's were started on it, obviously not! Humulin I is an intermediate acting insulin and as Northerner says M3 is a mixed insulin. It could be you are in what's called the 'honeymoon' period - an inappropriate name but it's where your pancreas is still producing some insulin. Even if you are, most would agree basal/bolus is the best way of managing it.

Diagnosis is a big shock but try not to worry about it too much as you'll soon get the hang of it all. 🙂

Thank you and no idea Dr's at hospital said my pancreas is dead thats how I ended up so bad... Going to ask my DSN about all this at my next app see what she says as she's just changed me onto the m3 and she said she might have to up the dose at next app depending on my blood sugars, all they've all said is they are trying to get in under control first don't think much has been explained to me

 

[Matt Cycle]

Thank you and no idea Dr's at hospital said my pancreas is dead thats how I ended up so bad... Going to ask my DSN about all this at my next app see what she says as she's just changed me onto the m3 and she said she might have to up the dose at next app depending on my blood sugars, all they've all said is they are trying to get in under control first don't think much has been explained to me

What happens in Type 1 is the insulin producing beta cells in the pancreas are killed off in an autoimmune attack by the body. The understanding is they don't all die and when you go onto injected insulin some beta cells may recover and the ones left are given a helping hand. Most of the time it's not enough to make a massive difference but it can affect control and insulin doses.

 

[Kirstylou911]

What happens in Type 1 is the insulin producing beta cells in the pancreas are killed off in an autoimmune attack by the body. The understanding is they don't all die and when you go onto injected insulin some beta cells may recover and the ones left are given a helping hand. Most of the time it's not enough to make a massive difference but it can affect control and insulin doses.

Ohhh right thank you, think I need to ask for more info from DSN, it's only been about 4 weeks since diagnosis but even in hospital I don't think much was explained or if it was my head was a bit of a mess haha

 

[Matt Cycle]

Ohhh right thank you, think I need to ask for more info from DSN, it's only been about 4 weeks since diagnosis but even in hospital I don't think much was explained or if it was my head was a bit of a mess haha

I was the same in hospital. It's only what I've picked over the years. After diagnosis I came out of hospital on the Saturday and was back at school on Monday morning! Did you have the classic Type 1 symptoms (the 4 t's) - thirsty, tired, toilet and thin?

 

[Kirstylou911]

I was the same in hospital. It's only what I've picked over the years. After diagnosis I came out of hospital on the Saturday and was back at school on Monday morning! Did you have the classic Type 1 symptoms (the 4 t's) - thirsty, tired, toilet and thin?

Yeah had all of them but my gps was still saying vertigo got sent home from work ill 2 days later my dad checked on me and found me was in hospital nearly 4 weeks DKA, sepsis, low cells and nerve damage in leg/foot can move my leg now its just my foot/ankle under neurology so hopefully they can fix it haha

 

[Radders]

Hi Kirstylou, glad you found the forum. I was diagnosed in 1991 but it wasn’t until I discovered a forum like this about 15 years later that I really started understanding how to control it. You’ve done the best thing by coming here. Have a good read and definitely get the book that’s been recommended because otherwise you’re going to be completely reliant on the professionals to tell you what to do, which doesn’t give you any feeling of being able to control things.
Good luck and don’t be afraid to ask questions on here.