Hello friends :)

[Susie-Q]

My lovely husband developed type 1 aged 17. Fast forward 40 years we are still coping and learning together. He has recently started to use Libre 2 owing to starting to not recognise the signs of low blood sugar. It's a learning curve, and a big step for a man who hates new gadgets ~ but hopefully this will help. Take care everyone ♡

 

[Inka]

Welcome @Susie-Q 🙂 I’ve had the Libre 2 a little while and think it’s great. It might help him improve his hypo awareness too as he can spot drops in good time. I generally try to keep my blood sugar 5 minimum in order to maintain awareness. It has helped.

 

[Susie-Q]

Welcome @Susie-Q 🙂 I’ve had the Libre 2 a little while and think it’s great. It might help him improve his hypo awareness too as he can spot drops in good time. I generally try to keep my blood sugar 5 minimum in order to maintain awareness. It has helped.

Aaww, hello ...thank you for your message, that's great to hear that you are enjoying your Libre 2, the alarms are very helpful with this model. Yes, 5 sounds good, he initially set the low alarm for 3.9 ...nooo, so it's 4.5 at the mo ~ better....he's had a few gremlins and the first one packed up with 4 days to go ~ I really want him to persevere with it, it's good for me to know he's got some protection now. Take care

 

[everydayupsanddowns]

Welcome to the forum @Susie-Q

Glad to hear the Libre is working out well so far. It‘s a bit of an adjustment, but can be a real gamechanger for people.

Has he ever done one of the courses in flexible insulin management like Dafne or Bertie? They can really help too.

And I thought this set of videos, with the exception of the numpty intro one by someone or other, were really helpful in terms of getting the most out of Libre1

Flash Glucose Monitoring | The Association of British Clinical Diabetologists

abcd.care

 

[Susie-Q]

Welcome to the forum @Susie-Q

Glad to hear the Libre is working out well so far. It‘s a bit of an adjustment, but can be a real gamechanger for people.

Has he ever done one of the courses in flexible insulin management like Dafne or Bertie? They can really help too.

And I thought this set of videos, with the exception of the numpty intro one by someone or other, were really helpful in terms of getting the most out of Libre1

Flash Glucose Monitoring | The Association of British Clinical Diabetologists

abcd.care

Thank you so much for your message ~ I will show Colin the links. No he hasn't done any courses, sadly he has had virtually no support throughout his life, he just seems to be let down constantly by everyone.
Basically it took months to get the correct T1 diagnosis at age 17 (he's 56 now) he was 5 1/5 stone and dying. He went to hospital, then was basically sent home with a glass syringe and no explanation of carbs or management.
It's been a hard journey for both of us. He was using syringes upto 4 years ago, then a chance conversion led to him switching to the pen. He reported a phobia to needles 2 years ago and no one has followed this up, therefore he never had the covid vaccine due to this, and was in the at risk group. He asked for the Libre 2 and eventually got it, two weeks ago and then couldn't get through to anyone to speak about setting it up. It's been so difficult. Anyway he's figured it out. He's given up on the medical centre locally, they can't even issue a prescription correctly. I will see if he will join this forum of lovely people. Thank you, this means a lot 🙂

 

[everydayupsanddowns]

Thank you so much for your message ~ I will show Colin the links. No he hasn't done any courses, sadly he has had virtually no support throughout his life, he just seems to be let down constantly by everyone.
Basically it took months to get the correct T1 diagnosis at age 17 (he's 56 now) he was 5 1/5 stone and dying. He went to hospital, then was basically sent home with a glass syringe and no explanation of carbs or management.

Good grief! What a tough time you and he have had of it 😱

There are free online versions of the courses if he thinks they would be helpful. Though one of the added bonuses (which actually can make a huge difference for people) can be the conversations in the room, and the face-to-face sharing of experiences with others facing the same struggles day to day.

Also there are these books which are highly recommended by forum members

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas Don't worry about the title - it is relevant for T1’s of all ages!

 

[rebrascora]

Please do encourage him to join us as you can learn so much from others here, much of it stuff that even the specialist nurses or consultants would not know. Comparing notes and learning from each other helps us all to improve our diabetes knowledge and management. Libre is a case in point.... there are lots of us here who are using it so we have all experienced problems with it at various times and have developed ways to tackle the problems, be it issues with it not giving readings or falling off or being a bit inaccurate for the first day or two. I hope you/your husband rang Abbott and reported the sensor which failed. They will explain how to retrieve the error codes and replace it if they feel it is faulty or talk you through how to get it to work if it is perhaps a software problem. Their customer services are pretty good but sadly some people seem to have more need of them than others. I use the original Libre model without the alarms which works brilliantly for me and I don't feel I need the alarms but clearly your husband does need them if he has lost some of his hypo awareness, so finding a way to make it work well for him will be important.

Is he under a consultant or DSN (Diabetes Specialist Nurse) at a hospital or clinic or just a practice nurse at your GP surgery for his care, which it rather sounds like. I too would recommend asking about a DAFNE course or whatever your local equivalent is. Just spending time with other Type 1 diabetics can be a real eye opener and great for learning from each other.... which of course is the huge benefit of this forum.

Anyway, welcome to you and if you have any questions from your own perspective as a partner or on his behalf, do feel free to ask.

 

[Susie-Q]

Good grief! What a tough time you and he have had of it 😱

There are free online versions of the courses if he thinks they would be helpful. Though one of the added bonuses (which actually can make a huge difference for people) can be the conversations in the room, and the face-to-face sharing of experiences with others facing the same struggles day to day.

Also there are these books which are highly recommended by forum members

Think Like a Pancreas by Gary Scheiner - A practical guide to managing diabetes with insulin

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas Don't worry about the title - it is relevant for T1’s of all ages!

Thank you for your continued understanding and kind response ~ we will definitely look into your recommended books.
Thank you so much 🙂

 

[nonethewiser]

Aaww, hello ...thank you for your message, that's great to hear that you are enjoying your Libre 2, the alarms are very helpful with this model. Yes, 5 sounds good, he initially set the low alarm for 3.9 ...nooo, so it's 4.5 at the mo ~ better....he's had a few gremlins and the first one packed up with 4 days to go ~ I really want him to persevere with it, it's good for me to know he's got some protection now. Take care

Better to set low alarm much higher, with no hypo awareness a good figure would be 6 IMHO, that way he can check which way arrow is heading then decide on what, if any action to take.

Have own alarm set for 4.8 but have good hypo awareness, since using libre 2 have very few hypos nowadays.

 

[Susie-Q]

Please do encourage him to join us as you can learn so much from others here, much of it stuff that even the specialist nurses or consultants would not know. Comparing notes and learning from each other helps us all to improve our diabetes knowledge and management. Libre is a case in point.... there are lots of us here who are using it so we have all experienced problems with it at various times and have developed ways to tackle the problems, be it issues with it not giving readings or falling off or being a bit inaccurate for the first day or two. I hope you/your husband rang Abbott and reported the sensor which failed. They will explain how to retrieve the error codes and replace it if they feel it is faulty or talk you through how to get it to work if it is perhaps a software problem. Their customer services are pretty good but sadly some people seem to have more need of them than others. I use the original Libre model without the alarms which works brilliantly for me and I don't feel I need the alarms but clearly your husband does need them if he has lost some of his hypo awareness, so finding a way to make it work well for him will be important.

Is he under a consultant or DSN (Diabetes Specialist Nurse) at a hospital or clinic or just a practice nurse at your GP surgery for his care, which it rather sounds like. I too would recommend asking about a DAFNE course or whatever your local equivalent is. Just spending time with other Type 1 diabetics can be a real eye opener and great for learning from each other.... which of course is the huge benefit of this forum.

Anyway, welcome to you and if you have any questions from your own perspective as a partner or on his behalf, do feel free to ask.

Yes ~ I think he will find this forum most helpful, I joined first to get a feel of the community ~ and I'm overwhelmed by how caring everyone is 🙂
Yes, he reported his Libre 2 , just so unfortunate it was his first one ...but he's back on track now.
I will encourage him to find a good course, though we have tried before. Thank you for taking the time to write and offer your support, it is greatly appreciated🙂

 

[everydayupsanddowns]

Better to set low alarm much higher, with no hypo awareness a good figure would be 6 IMHO, that way he can check which way arrow is heading then decide on what, if any action to take.

Have own alarm set for 4.8 but have good hypo awareness, since using libre 2 have very few hypos nowadays.

The tricky thing about me with Libre2 was the way that the alarm trigger only seemed to ‘reset’ if you go back up above the low limit.

I’m not sure the alarm would sound again after it had notified for 6, unless you went back up past 6 again.

So you’d possibly feel that 5.8 and cruising was OK, but you’d get no notification if it went 5… 4... and then 3 an hour or so later?

 

[Susie-Q]

Better to set low alarm much higher, with no hypo awareness a good figure would be 6 IMHO, that way he can check which way arrow is heading then decide on what, if any action to take.

Have own alarm set for 4.8 but have good hypo awareness, since using libre 2 have very few hypos nowadays.

This is great advice, thank you so much. Its so good to hear that you have very few hypos with the Libre 2 system. Its very encouraging that it works so well 🙂

 

[nonethewiser]

This is great advice, thank you so much. Its so good to hear that you have very few hypos with the Libre 2 system. Its very encouraging that it works so well 🙂

It's great device, so far been really lucky with reliability.

Find its also much more accurate than libre 1 so that's another added bonus to alarm feature.

 

[SB2015]

So glad that you have found this forum @Susie-Q , and do encourage Colin to do the same.
He has certainly been left to get on with things!!! There is loads of experience to tap into on here and no questions are considered silly on here.

Great that Colin has finally got a Libre and he can now start to make this work for him. It provides a lot of information and can be very helpful for heading off the hypos as well as hypers, both with the direction of travel arrows and the alarms.

What insulins is Colin using? I only learnt on here of alternatives, and found changes to those helped me before I went on to a pump. There has been so many developments in just the 14 years I have had T1, so well worth asking questions.

 

[Susie-Q]

So glad that you have found this forum @Susie-Q , and do encourage Colin to do the same.
He has certainly been left to get on with things!!! There is loads of experience to tap into on here and no questions are considered silly on here.

Great that Colin has finally got a Libre and he can now start to make this work for him. It provides a lot of information and can be very helpful for heading off the hypos as well as hypers, both with the direction of travel arrows and the alarms.

What insulins is Colin using? I only learnt on here of alternatives, and found changes to those helped me before I went on to a pump. There has been so many developments in just the 14 years I have had T1, so well worth asking questions.

Aaww thank you for your message ~ Colin said he will join, I just know this forum will be helpful for him...
I've never studied his particular insulin, I honestly thought there was only one sort.
So, looking at his medication now ~ he uses a Humulin Kwikpen, Isophane insulin and Humulin S cartridges. He adjusts the ammounts according to meals and activity but I fear this my be guess work due to lack of information in his past.
I hope as soon as he joins he will get all the advice and support he needs.
He works long hours and can be tired in the evening, hence the delay in joining but hopefully soon, then he can take over conversations like this in more depth
Thank you for your care with this matter

 

[Rob Oldfield]

Thank you so much for your message ~ I will show Colin the links. No he hasn't done any courses, sadly he has had virtually no support throughout his life, he just seems to be let down constantly by everyone.
Basically it took months to get the correct T1 diagnosis at age 17 (he's 56 now) he was 5 1/5 stone and dying. He went to hospital, then was basically sent home with a glass syringe and no explanation of carbs or management.
It's been a hard journey for both of us. He was using syringes upto 4 years ago, then a chance conversion led to him switching to the pen. He reported a phobia to needles 2 years ago and no one has followed this up, therefore he never had the covid vaccine due to this, and was in the at risk group. He asked for the Libre 2 and eventually got it, two weeks ago and then couldn't get through to anyone to speak about setting it up. It's been so difficult. Anyway he's figured it out. He's given up on the medical centre locally, they can't even issue a prescription correctly. I will see if he will join this forum of lovely people. Thank you, this means a lot 🙂

That really does sound like a poor standard of care he's had. Might be worth switching to a different GP, or approaching the specialist team at your local hospital directly?

 

[Susie-Q]

That really does sound like a poor standard of care he's had. Might be worth switching to a different GP, or approaching the specialist team at your local hospital directly?

Oh indeed, Rob , it's quite unbelievable. He has changed surgeries, but sadly no joy with any specialist nurses there, he would come away from an appointment really frustrated.
Yes, recently he has more luck speaking to a particular Doctor at our main hospital, which lifted his spirit a little.
I particularly want him to join your forum because I know he will listen and take advice from people in the same situation ~ I try to put myself 'in his shoes', but he says I've no idea of what it's like, therfore I can only support and not advise.
Take care

 

[Bruce Stephens]

There are free online versions of the courses if he thinks they would be helpful.

And a new (2 day) online course (I mentioned it elsewhere) happening starting 13 July: https://understandingtype1.mydiabetes.com

If he can spare the time (2-3 hours per day, they say), it seems like an obviously valuable thing to try.

 

[Susie-Q]

And a new (2 day) online course (I mentioned it elsewhere) happening starting 13 July: https://understandingtype1.mydiabetes.com

If he can spare the time (2-3 hours per day, they say), it seems like an obviously valuable thing to try.

Thank you ~ we would never have known about this and other courses without this forum ..... this sounds great, I think he needs to re wind and re learn, I'm sure with better understanding he will cope better.
Im very grateful for your help, and will pass this on. Thank you 🙂

 

[trophywench]

Exactly the same ones I used until about 1999 ish - was OK for a couple of years until I had some terrible hypos driving home from work on the motorway despite having tested before getting in the car and being 6.0 to 7.0 ish. Yes I adjusted for meals too - but all guesswork and never very precise. Trouble is, the Humulin I is not a true 'background only' insulin and the S is not a true faster acting one either. I've done a lot better since they swapped me to more modern insulins.

You do sometimes need to 'kiss a few frogs' before you eventually find your 'prince' with insulins as well as your choice of long term life partner and bedfellow!

Shedloads of stuff about diabetes I never knew before I joined a diabetes internet forum and I'd have been 50+ by then myself. Sometimes I know I've thought 'that doesn't quite make sense to me' so thought I'll come back to that later and by the time I have someone else has thought the same and replied 'I think you are trying to say (whatever)' - and then it does make sense. Before the weekend I asked someone what tests they'd have and the person replied and sounded a bit shirty with me, as if I was suggesting they did not really have diabetes. Barbara responded for me and said she didn't think I was suggesting anything of the kind, but rather attempting to find out if they'd had the proper blood tests to establish without shadow of a doubt that they did really have Type 2 diabetes at all, or one of the other variations of diabetes and their doctor had just assumed because they were middle aged, it had to be Type 2. Barbara was correct, that is what/why I was asking.

Years ago when both Colin and myself were diagnosed (I was 22) it didn't happen quite as much as it does in more recent years, but shedloads are misdiagnosed and given the wrong label. Type 1 can happen at any age - 7 years old or 70 years old. Still no cure - so we all need to help ourselves when we can!