# Newly diagnosed type 1



## Kirstylou911 (Jun 23, 2018)

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?


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## Northerner (Jun 24, 2018)

Kirstylou911 said:


> 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


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## khskel (Jun 24, 2018)

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.


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## Kirstylou911 (Jun 24, 2018)

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


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## KARNAK (Jun 24, 2018)

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.


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## Northerner (Jun 24, 2018)

Kirstylou911 said:


> 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


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## HOBIE (Jun 24, 2018)

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


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## Flower (Jun 24, 2018)

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.


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## Kirstylou911 (Jun 24, 2018)

Northerner said:


> 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
> 
> ...


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


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## Kirstylou911 (Jun 24, 2018)

Flower said:


> 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
> 
> ...


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


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## Kirstylou911 (Jun 24, 2018)

HOBIE said:


> 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


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## HOBIE (Jun 24, 2018)

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


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## Kirstylou911 (Jun 24, 2018)

Just seem to alway put 911 no idea why haha


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## Matt Cycle (Jun 24, 2018)

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.


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## Kirstylou911 (Jun 24, 2018)

Matt Cycle said:


> 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


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## Matt Cycle (Jun 24, 2018)

Kirstylou911 said:


> 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.


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## Kirstylou911 (Jun 24, 2018)

Matt Cycle said:


> 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


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## Matt Cycle (Jun 24, 2018)

Kirstylou911 said:


> 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?


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## Kirstylou911 (Jun 24, 2018)

Matt Cycle said:


> 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


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## Radders (Jun 24, 2018)

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.


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## Matt Cycle (Jun 24, 2018)

Kirstylou911 said:


> 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



Type 1 is relatively rare so GP's may not see many or any cases.  That's no excuse and really poor if you were going to them for nearly 2 months with those symptoms.  Luckily when I went to my GP with DKA he just did a urine dipstick test and sent me straight to hospital.  Hopefully now with your diagnosis you can move on from that and manage it.


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## Bloden (Jun 24, 2018)

Kirstylou911 said:


> 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


Good grief, Kirstylou!  Welcome to the forum - I’m so glad you found us.


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## Kirstylou911 (Jun 24, 2018)

Matt Cycle said:


> Type 1 is relatively rare so GP's may not see many or any cases.  That's no excuse and really poor if you were going to them for nearly 2 months with those symptoms.  Luckily when I went to my GP with DKA he just did a urine dipstick test and sent me straight to hospital.  Hopefully now with your diagnosis you can move on from that and manage it.


Yeah was going at least once a week even went to A&E  and yeah it is a massive leaning curve but just take 1 day at a time and hope for the best


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## SB2015 (Jun 25, 2018)

Hi Kirsty and welcome.  You have certainly been through it, and your situation is another example of GPs not looking for T1 in Adults!!  You may find that some of the problems that you are having with nerve damage will correct themselves, but if not I have found that it is amazing how your brain adapts to the nerve messages that you do have in tact.

I was diagnosed as an adult, and found the book_ T1 in Children adolescents and young adults_ is brilliant, in spite of the age reference.  the book is clearly set ou,  gives explanations for the instructions we are given in how to manage our diabetes.  And as you have already found there is loads of support on here.  I have learnt most of what I know from people on here.

As Northerner said it will help you to get switched to Multiple Daily Injection (MDI) where you are then able to deliver insulin for the glucose that your liver is making (background or basal) and a different quick acting insulin for the glucose that comes from your food (bolus).  It might sound a bit daunting doing more injections but it gives you so much more flexibility, and you can learn to match you insulin to what you want to eat.  

Keep in touch and keep asking questions.  There is plenty of help available and no question is considered silly. Just ask.


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## SB2015 (Jun 25, 2018)

Kirstylou911 said:


> 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


It takes time for your body to recover and levels to settle.  It sounds as if you are in good hands at the hospital with the specialist team and they are working with you to gradually settle things down.  I look back on the targets that I was set at the beginning and realise that it took me quite a while to get down to ‘normal’ levels (or at least the new normal). 
Like learning to drive there seems to be a lot to do all at the same time  in the beginning, but it then becomes automatic.  Just keep asking your team and people on here any questions that you have.


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## Kirstylou911 (Jun 25, 2018)

Benny G said:


> Hello Kirsty I was diagnosed about the same age you are now with a thrombosis in my leg and my immune system shot to pieces. I had 6 episodes of blood poisoning over the next 2 years. I was started on a similar mix insulin like you. With only 2 injections a day it is a bit easier to remember to keep to schedule. Mix insulin is like training wheels on a bike, as you progress you will want greater freedom.
> It's early days for you so spend as much time as you can educating yourself about nutrition and type 1 diabetes. Don't worry, life goes on.


Thanks and it's still a bit of a shock just trying to get a bit of normality now trying to get out more too I've got good friends trying to learn about it too but still feel a bit alone just taking 1 day at a time


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## TheClockworkDodo (Jun 25, 2018)

Hello Kirstylou and welcome 

You've already been given lots of good advice so I'll just add another vote in favour of MDI - it's so much more flexible to inject when you want to eat rather than having to eat because you've injected.

Do keep asking if you have any questions, someone here is sure to be able to help.


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## Lucy Honeychurch (Jun 25, 2018)

Hi and welcome 
Sorry to hear you were messed about so badly at the beginning, I hope you are recovering OK x


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## Kirstylou911 (Jun 25, 2018)

Lucy Honeychurch said:


> Hi and welcome
> Sorry to hear you were messed about so badly at the beginning, I hope you are recovering OK x


Hello 
Getting there was a bit of a shock to say the least just taking 1 day at a time lots to learn x


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## SB2015 (Jun 26, 2018)

Good morning Kirsty
Glad that you are taking things step by step.
Let us know how you get on with your next appointment and if you have any questions at all, just ask.


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## Kirstylou911 (Jul 5, 2018)

Hey everyone, 

Had app with my DSN other day she's upped my dose of insulin again but has said it looks like I'm. Getting my bg levels under control they are still a bit up and down but not as bad as they first was so good news I'm getting there with it


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## SB2015 (Jul 6, 2018)

Kirstylou911 said:


> Hey everyone,
> 
> Had app with my DSN other day she's upped my dose of insulin again but has said it looks like I'm. Getting my bg levels under control they are still a bit up and down but not as bad as they first was so good news I'm getting there with it


Hi Kirsty

Good to hear things are beginning to settle.  Everyone’s BG goes up and down through the day, with food we eat, exercise, sitting around (I have to take account of the Wimbledon factor each year in adjusting my Insulin). Once things settle you will be able to manage the lumps and dips in your levels more effectively.

Has your DSN discussed Multiple Daily Injections (MDI) yet.  That will certainly make your life a lot easier and far more flexible.  Then you can start to adjust your own doses of insulin to match what you want to eat and want to do each day.


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## Kirstylou911 (Jul 6, 2018)

SB2015 said:


> Hi Kirsty
> 
> Good to hear things are beginning to settle.  Everyone’s BG goes up and down through the day, with food we eat, exercise, sitting around (I have to take account of the Wimbledon factor each year in adjusting my Insulin). Once things settle you will be able to manage the lumps and dips in your levels more effectively.
> 
> Has your DSN discussed Multiple Daily Injections (MDI) yet.  That will certainly make your life a lot easier and far more flexible.  Then you can start to adjust your own doses of insulin to match what you want to eat and want to do each day.


Hey  not discussed MDI yet with being newly diagnosed just trying to get it leveled out first next app won't be till next month because DSN on holiday now so see how it goes and I might mention it


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## SB2015 (Jul 6, 2018)

Good to hear you have another appointment soon.  
You certainly seem to have a good team around you.


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## HOBIE (Jul 7, 2018)

HOBIE said:


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


Its the 911 bit cos I like cars.


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## HOBIE (Jul 7, 2018)

Kirstylou911 said:


> Just seem to alway put 911 no idea why haha


We have the answer ?


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## Kirstylou911 (Jul 9, 2018)

HOBIE said:


> We have the answer ?


 Not yet haha


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## Mikep73 (Jul 10, 2018)

Hi kirstylou 

Welcome to the forums. Yeah getting told the dreaded news is a lot to take in but take your time to absorb it and don't forget that your diabetes team are there to help and have probably seen everything before now. Also the forums are a wealth of information and don't be scared to ask anything at all.

Hope things settle down soon.

Mike


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## Kirstylou911 (Jul 10, 2018)

At the moment i dread to inject my insulin it stings really bad... Anyone else had this problem?


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## Mikep73 (Jul 10, 2018)

Kirstylou911 said:


> At the moment i dread to inject my insulin it stings really bad... Anyone else had this problem?



At first yeah but it does get easier and stings less often. My advise on this is to not use your insulin straight from the fridge give it a little time to warm up as this can lessen stinging.

Hope this helps a little

Mike


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## Kirstylou911 (Jul 10, 2018)

Mikep73 said:


> At first yeah but it does get easier and stings less often. My advise on this is to not use your insulin straight from the fridge give it a little time to warm up as this can lessen stinging.
> 
> Hope this helps a little
> 
> Mike


It was fine when I was on humilin I it's been changed to humilin m3 and this one stings when I inject it =/


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## Mikep73 (Jul 10, 2018)

A


Kirstylou911 said:


> It was fine when I was on humilin I it's been changed to humilin m3 and this one stings when I inject it =/




Ahhh I see. Sorry I've never been on humilin as I'm on novorapid and toujeo. It's worth asking your diabetes nurse about the stinging if it's really uncomfortable as they might be able to suggest something to help. Where are you injecting?? Do you rotate sites??

Mike


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## Kirstylou911 (Jul 10, 2018)

Mikep73 said:


> A
> In my belly lol I've tried side of the leg too but that's just as bad and yeah I change the spot each time I do it. It took me 2 attempts to inject it today and I'm going to give dsn a call mines on holiday at moment too lol
> 
> 
> ...


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## Mikep73 (Jul 10, 2018)

Lol yeah that's always the way with my dsn when i need to call her.

I've always found my legs stings more to but I put that down to there being no fat on them lol. It's good your rotating sites as a lot of new diabetics don't.

Do you keep your current pen out of the fridge??

Mike


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## Kirstylou911 (Jul 10, 2018)

Mikep73 said:


> Lol yeah that's always the way with my dsn when i need to call her.
> 
> I've always found my legs stings more to but I put that down to there being no fat on them lol. It's good your rotating sites as a lot of new diabetics don't.
> 
> ...


I've got. Bit of fat on mine but still stings just as bad lol and yeah I keep it out the fridge and get my next one out when I only have a couple of shots left in the one I'm using


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## Mikep73 (Jul 10, 2018)

Kirstylou911 said:


> I've got. Bit of fat on mine but still stings just as bad lol and yeah I keep it out the fridge and get my next one out when I only have a couple of shots left in the one I'm using




Lol well I'd say your doing everything I do there. Might be worth while just giving the site a clean first. I use rubbing alcohol to clean mine but your dsn might be able to advise more.

Mike


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## Kirstylou911 (Jul 10, 2018)

Mikep73 said:


> Lol well I'd say your doing everything I do there. Might be worth while just giving the site a clean first. I use rubbing alcohol to clean mine but your dsn might be able to advise more.
> 
> Mike


Yeah I just rang was about to leave a message but it cut me off lol


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## Mikep73 (Jul 10, 2018)

Kirstylou911 said:


> Yeah I just rang was about to leave a message but it cut me off lol




Lol I hate that

Mike


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## TheClockworkDodo (Jul 10, 2018)

Some people do have adverse reactions to particular insulins, or more likely to the carrier fluid the insulin is in, so it might be worth asking if you can try a different insulin, especially if the stinging didn't start until after you switched insulins.

More often people find that poor quality needles cause stinging or painful injections though, so it's also worth asking about that - sometimes GPs prescribe or pharmacists supply less good needles because they're cheaper, which is OK if someone's just giving themselves the occasional injection, but no use at all for someone who's on daily (often several times daily) injections for life.

Either way, do keep hassling your DSN until you get something better!


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