PH Type 1 Diabetics
Discussion
Do we have many T1 diabetics on PH? I thought we could have a support group 
I'm 39 and was diagnosed at 11. I coped remarkably well with the diagnosis, as at that age, you're actually quite blasé about everything then and accept things quite willingly. This was in the days of checking blood sugar with a coloured litmus-type strip against a colour chart to determine approximate range. Finger pricking was done with a spring-loaded black box torture device like this:
I injected for a few years using a proper needle and bottle kit, so disposable syringes and little glass bottles of fast- and slow-acting insulin which I had to mix together in the correct dosage, check for air and inject. When I reached around 17 I graduated to a cartridge insulin pen of premixed insulin, which was a good change for the better.
I actually didn't struggle too badly with any societal issues in my teens, largely because I had developed the disease at a young age so all my friends and I were comfortable with it, but also because I was quite subtle about my management of it around others. I did get the odd comment from people who assumed I'd got the disease "because I ate too many sweets" and that sort of thing, but knowledge of diabetes as a whole was not exactly widespread back then so I never felt any animosity towards them.
I managed reasonably well through school and university, but to be honest was always quite lax about checking my levels and going to the doctor's for reviews. I think I went three or four years without a diabetic review at one point. The usual stuff, I was young and thought I was invincible and didn't like the lectures I got when my HbA1c was too high. I drank too much and ate too much crappy food; it makes me cringe now when I think how bad my glucose control must have been.
At this point in my mid 20s, I'd moved to disposable prefilled insulin pens, an 80/20 mix of long and fast-acting insulin. Still on a very rigid regime of two injections a day and eating at very set times. After a long discussion with my diabetic nurse, I made the decision to switch to MDI (multiple daily injections), where I injected long-acting insulin (Levemir) morning and evening, and then jabbed with Novorapid as required. I was already fairly proficient at carb-counting as I'd been taking correction doses in my younger years.
In time I got to my 30s, got married and had a young family, and started to realise the importance of staying healthy. Although I had managed to avoid any major complications (miraculously), I developed proliferative retinopathy in both eyes at 35, and at 39, I'm now on the borderline of having laser surgery although so far the condition has been stable for two years. I also had a heart attack at 35 due to a congenital heart defect (fixed now), and also developed Addison's Disease which is another quite rare autoimmune disease of the adrenal glands, so life hasn't been kind to me in a way but there are always others in a much worse position.
Blood testing by this point had settled to around a few times a day on the odd days I could remember to do it, although I always did it before driving/travelling or doing anything strenuous. Three years ago, I started self-funding the Freestyle Libre flash glucose monitor and wore that for a couple of years; this was probably the best thing I ever did and dropped my A1c levels down from 77 to the current 48 as of a couple of months ago. I also joined a gym opposite my work and go 4 days a week now which has measurably helped flatten my glucose levels.
I haven't let my condition stop me from doing the things I love to do - I was a walking group leader for the Duke of Edinburgh scheme for a few years involving remote expeditions, and two years ago I completed the Trailwalker challenge for Oxfam which was 100km non-stop on the South Downs Way (managing this with finger pricks alone would have been....challenging...in the extreme). Currently signed up to do the Chiltern 50k at the end of September in aid of Alzheimer's Society.
Because I'ma big believer in technology, I started to wonder whether the Libre monitor could be improved, and then found there was an entire community working on the same target via Facebook groups. Consequently, I now use a Freestyle Libre monitor with a MiaoMiao transmitter bolted on top which polls my glucose level every 5 minutes and sends it to a watch, which then syncs to my phone via an app called xDrip+, and finally uploads the results to a cloud-based solution called NightScout which I can share with my diabetic nurses. Sort of a DIY continuous glucose monitoring system without the huge expense. Has alarms to wake me up in the night when too high/low as well, and my missus can follow on her phone or the NightScout site (and nag me when I'm too high after beer!)
Monitor and transmitter:
Watch:
xDrip App:
Nightscout:
I'm 39 and was diagnosed at 11. I coped remarkably well with the diagnosis, as at that age, you're actually quite blasé about everything then and accept things quite willingly. This was in the days of checking blood sugar with a coloured litmus-type strip against a colour chart to determine approximate range. Finger pricking was done with a spring-loaded black box torture device like this:
I injected for a few years using a proper needle and bottle kit, so disposable syringes and little glass bottles of fast- and slow-acting insulin which I had to mix together in the correct dosage, check for air and inject. When I reached around 17 I graduated to a cartridge insulin pen of premixed insulin, which was a good change for the better.
I actually didn't struggle too badly with any societal issues in my teens, largely because I had developed the disease at a young age so all my friends and I were comfortable with it, but also because I was quite subtle about my management of it around others. I did get the odd comment from people who assumed I'd got the disease "because I ate too many sweets" and that sort of thing, but knowledge of diabetes as a whole was not exactly widespread back then so I never felt any animosity towards them.
I managed reasonably well through school and university, but to be honest was always quite lax about checking my levels and going to the doctor's for reviews. I think I went three or four years without a diabetic review at one point. The usual stuff, I was young and thought I was invincible and didn't like the lectures I got when my HbA1c was too high. I drank too much and ate too much crappy food; it makes me cringe now when I think how bad my glucose control must have been.
At this point in my mid 20s, I'd moved to disposable prefilled insulin pens, an 80/20 mix of long and fast-acting insulin. Still on a very rigid regime of two injections a day and eating at very set times. After a long discussion with my diabetic nurse, I made the decision to switch to MDI (multiple daily injections), where I injected long-acting insulin (Levemir) morning and evening, and then jabbed with Novorapid as required. I was already fairly proficient at carb-counting as I'd been taking correction doses in my younger years.
In time I got to my 30s, got married and had a young family, and started to realise the importance of staying healthy. Although I had managed to avoid any major complications (miraculously), I developed proliferative retinopathy in both eyes at 35, and at 39, I'm now on the borderline of having laser surgery although so far the condition has been stable for two years. I also had a heart attack at 35 due to a congenital heart defect (fixed now), and also developed Addison's Disease which is another quite rare autoimmune disease of the adrenal glands, so life hasn't been kind to me in a way but there are always others in a much worse position.
Blood testing by this point had settled to around a few times a day on the odd days I could remember to do it, although I always did it before driving/travelling or doing anything strenuous. Three years ago, I started self-funding the Freestyle Libre flash glucose monitor and wore that for a couple of years; this was probably the best thing I ever did and dropped my A1c levels down from 77 to the current 48 as of a couple of months ago. I also joined a gym opposite my work and go 4 days a week now which has measurably helped flatten my glucose levels.
I haven't let my condition stop me from doing the things I love to do - I was a walking group leader for the Duke of Edinburgh scheme for a few years involving remote expeditions, and two years ago I completed the Trailwalker challenge for Oxfam which was 100km non-stop on the South Downs Way (managing this with finger pricks alone would have been....challenging...in the extreme). Currently signed up to do the Chiltern 50k at the end of September in aid of Alzheimer's Society.
Because I'ma big believer in technology, I started to wonder whether the Libre monitor could be improved, and then found there was an entire community working on the same target via Facebook groups. Consequently, I now use a Freestyle Libre monitor with a MiaoMiao transmitter bolted on top which polls my glucose level every 5 minutes and sends it to a watch, which then syncs to my phone via an app called xDrip+, and finally uploads the results to a cloud-based solution called NightScout which I can share with my diabetic nurses. Sort of a DIY continuous glucose monitoring system without the huge expense. Has alarms to wake me up in the night when too high/low as well, and my missus can follow on her phone or the NightScout site (and nag me when I'm too high after beer!)
Monitor and transmitter:
Watch:
xDrip App:
Nightscout:
Edited by Tankrizzo on Friday 3rd August 15:15
Edited by Tankrizzo on Friday 3rd August 15:15
PositronicRay said:
Interested in how you're getting on with the Libre, it's a few yrs since I investigated and things do move on.
(When 1st diagnosed around 1979 I had a reusable glass syringe, and allowed 6 needles per month)
Tankrizzo said:
PositronicRay said:
Interested in how you're getting on with the Libre, it's a few yrs since I investigated and things do move on.
(When 1st diagnosed around 1979 I had a reusable glass syringe, and allowed 6 needles per month)
PositronicRay said:
Interesting, in the early days lots of tales re reliability, infected sore sites and supply issues. Do have to calibrate it and do the DVLA recognise it as valid yet?
If you just use the Libre on its own, no, you don't calibrate it - but I use the xDrip+ app which requires daily fingerprick calibration, and it's pretty much on the money (0.6mmol/l deviance when I did it an hour ago). I've been using the Libre for about three years I think and have only had one slightly infected site which cleared up with gentle care and a bit of Savlon. Abbott seem to have sorted out the supply issues now; I ordered last Tuesday and received by Friday. You can now buy them off the shelf at Superdrug and Asda pharmacies too (as well as your usual local pharmacy who can order them in for you, but those two are the cheapest).DVLA-wise a recommendation has been made by the Government Driving Advisory Group but nothing's happened yet, I believe a change of law is required for them to officially recognise the Libre as an alternative to finger pricks before driving.
Tankrizzo said:
PositronicRay said:
Interesting, in the early days lots of tales re reliability, infected sore sites and supply issues. Do have to calibrate it and do the DVLA recognise it as valid yet?
If you just use the Libre on its own, no, you don't calibrate it - but I use the xDrip+ app which requires daily fingerprick calibration, and it's pretty much on the money (0.6mmol/l deviance when I did it an hour ago). I've been using the Libre for about three years I think and have only had one slightly infected site which cleared up with gentle care and a bit of Savlon. Abbott seem to have sorted out the supply issues now; I ordered last Tuesday and received by Friday. You can now buy them off the shelf at Superdrug and Asda pharmacies too (as well as your usual local pharmacy who can order them in for you, but those two are the cheapest).DVLA-wise a recommendation has been made by the Government Driving Advisory Group but nothing's happened yet, I believe a change of law is required for them to officially recognise the Libre as an alternative to finger pricks before driving.
PositronicRay said:
Very good. You mentioned earlier that you were hoping for NHS to supply, that's something that's also changed by the sounds of it?
Yeah, the NHS is now prescribing them but it's not 100% UK-wide yet and as usual, the decision is down to the local CCG whether or not to prescribe. Some have more stringent criteria than others, you can check for yours locally. 
Just seen this thread... I am a 30+ year veteran of T1. Diagnosed at 19, and am 50 this year...
The Libre is the biggest game changer since the introduction of genetically manufactured insulin.
I also use the MiaoMiao setup, connecting to Spike on iOS.
What the Libre does, is make you think differently, as you are looking at trends as well as simple numbers.
I suffered enormously with dawn phenomenon and massive meal spikes. Using the Libre I have been able to understand much better how certain foods affect me, and gives me much greater control.
The Libre does however, have it’s issues.
1. Keep hydrated... because the Libre measures interstitial fluid (rather than blood) if you are dehydrated, you will get inaccurate readings
2. Don’t put all overnight lows down to actual Hypos. The Libre sensor becomes inaccurate when it is compressed into the skin... so if you lie on it whilst sleeping, it can give false data.
3. For some (not all, but including me!) the first day of a new sensor is usually 2-3mmol off accuracy... so I always apply the sensor around 12-18 hours before activating it. You don’t lose any of the 14 day run time, you are simply initialising the sensor after it has had 12-18 hours to settle into the body, and the body has had that time to repair the minor trauma where the filament from the sensor has gone into your body.
I find my day 1 readings now are pretty accurate.
4. Invest in skintac or tegaderm to stick over the sensor and hold it in place. I only have to look at a door frame and the sensor leaps off my arm...
I am one of the lucky ones, as my CCG are forward thinking, and are supplying many T1 patients with the Libre on prescription (I was a self funded previously)
For any diabetic, newly diagnosed or veterans like me... if you haven’t read it, get hold of this book.
It is an enormous help
https://www.amazon.co.uk/dp/0738215147/ref=cm_sw_r...
The Libre is the biggest game changer since the introduction of genetically manufactured insulin.
I also use the MiaoMiao setup, connecting to Spike on iOS.
What the Libre does, is make you think differently, as you are looking at trends as well as simple numbers.
I suffered enormously with dawn phenomenon and massive meal spikes. Using the Libre I have been able to understand much better how certain foods affect me, and gives me much greater control.
The Libre does however, have it’s issues.
1. Keep hydrated... because the Libre measures interstitial fluid (rather than blood) if you are dehydrated, you will get inaccurate readings
2. Don’t put all overnight lows down to actual Hypos. The Libre sensor becomes inaccurate when it is compressed into the skin... so if you lie on it whilst sleeping, it can give false data.
3. For some (not all, but including me!) the first day of a new sensor is usually 2-3mmol off accuracy... so I always apply the sensor around 12-18 hours before activating it. You don’t lose any of the 14 day run time, you are simply initialising the sensor after it has had 12-18 hours to settle into the body, and the body has had that time to repair the minor trauma where the filament from the sensor has gone into your body.
I find my day 1 readings now are pretty accurate.
4. Invest in skintac or tegaderm to stick over the sensor and hold it in place. I only have to look at a door frame and the sensor leaps off my arm...
I am one of the lucky ones, as my CCG are forward thinking, and are supplying many T1 patients with the Libre on prescription (I was a self funded previously)
For any diabetic, newly diagnosed or veterans like me... if you haven’t read it, get hold of this book.
It is an enormous help
https://www.amazon.co.uk/dp/0738215147/ref=cm_sw_r...
Meeja said:
Just seen this thread... I am a 30+ year veteran of T1. Diagnosed at 19, and am 50 this year...
The Libre is the biggest game changer since the introduction of genetically manufactured insulin.
I also use the MiaoMiao setup, connecting to Spike on iOS.
What the Libre does, is make you think differently, as you are looking at trends as well as simple numbers.
I suffered enormously with dawn phenomenon and massive meal spikes. Using the Libre I have been able to understand much better how certain foods affect me, and gives me much greater control.
The Libre does however, have it’s issues.
1. Keep hydrated... because the Libre measures interstitial fluid (rather than blood) if you are dehydrated, you will get inaccurate readings
2. Don’t put all overnight lows down to actual Hypos. The Libre sensor becomes inaccurate when it is compressed into the skin... so if you lie on it whilst sleeping, it can give false data.
3. For some (not all, but including me!) the first day of a new sensor is usually 2-3mmol off accuracy... so I always apply the sensor around 12-18 hours before activating it. You don’t lose any of the 14 day run time, you are simply initialising the sensor after it has had 12-18 hours to settle into the body, and the body has had that time to repair the minor trauma where the filament from the sensor has gone into your body.
I find my day 1 readings now are pretty accurate.
4. Invest in skintac or tegaderm to stick over the sensor and hold it in place. I only have to look at a door frame and the sensor leaps off my arm...
I am one of the lucky ones, as my CCG are forward thinking, and are supplying many T1 patients with the Libre on prescription (I was a self funded previously)
For any diabetic, newly diagnosed or veterans like me... if you haven’t read it, get hold of this book.
It is an enormous help
https://www.amazon.co.uk/dp/0738215147/ref=cm_sw_r...
Great post! I've actually taken to wearing my Libre on the inside of my bicep, just because it's much less at risk of being 'doorframed'....The Libre is the biggest game changer since the introduction of genetically manufactured insulin.
I also use the MiaoMiao setup, connecting to Spike on iOS.
What the Libre does, is make you think differently, as you are looking at trends as well as simple numbers.
I suffered enormously with dawn phenomenon and massive meal spikes. Using the Libre I have been able to understand much better how certain foods affect me, and gives me much greater control.
The Libre does however, have it’s issues.
1. Keep hydrated... because the Libre measures interstitial fluid (rather than blood) if you are dehydrated, you will get inaccurate readings
2. Don’t put all overnight lows down to actual Hypos. The Libre sensor becomes inaccurate when it is compressed into the skin... so if you lie on it whilst sleeping, it can give false data.
3. For some (not all, but including me!) the first day of a new sensor is usually 2-3mmol off accuracy... so I always apply the sensor around 12-18 hours before activating it. You don’t lose any of the 14 day run time, you are simply initialising the sensor after it has had 12-18 hours to settle into the body, and the body has had that time to repair the minor trauma where the filament from the sensor has gone into your body.
I find my day 1 readings now are pretty accurate.
4. Invest in skintac or tegaderm to stick over the sensor and hold it in place. I only have to look at a door frame and the sensor leaps off my arm...
I am one of the lucky ones, as my CCG are forward thinking, and are supplying many T1 patients with the Libre on prescription (I was a self funded previously)
For any diabetic, newly diagnosed or veterans like me... if you haven’t read it, get hold of this book.
It is an enormous help
https://www.amazon.co.uk/dp/0738215147/ref=cm_sw_r...
Type 1 for 15 years here. Currently on Toujeo/Novorapid.
I don't think I'll be able to get into the Libre thing since I work in MRI and the sensors will fail if they go in. Unless they can be removed and reapplied multiple times?
I've read some people's experiences (mainly from the US, where continuous glucose monitoring and insulin pumps are more widely used) where it has led them into complete obsession with blood sugars. I get that trend data can help enormously, but I don't want it to be the biggest part of my life...
I don't think I'll be able to get into the Libre thing since I work in MRI and the sensors will fail if they go in. Unless they can be removed and reapplied multiple times?
I've read some people's experiences (mainly from the US, where continuous glucose monitoring and insulin pumps are more widely used) where it has led them into complete obsession with blood sugars. I get that trend data can help enormously, but I don't want it to be the biggest part of my life...
Tankrizzo said:
PositronicRay said:
Interesting, in the early days lots of tales re reliability, infected sore sites and supply issues. Do have to calibrate it and do the DVLA recognise it as valid yet?
If you just use the Libre on its own, no, you don't calibrate it - but I use the xDrip+ app which requires daily fingerprick calibration, and it's pretty much on the money (0.6mmol/l deviance when I did it an hour ago). I've been using the Libre for about three years I think and have only had one slightly infected site which cleared up with gentle care and a bit of Savlon. Abbott seem to have sorted out the supply issues now; I ordered last Tuesday and received by Friday. You can now buy them off the shelf at Superdrug and Asda pharmacies too (as well as your usual local pharmacy who can order them in for you, but those two are the cheapest).DVLA-wise a recommendation has been made by the Government Driving Advisory Group but nothing's happened yet, I believe a change of law is required for them to officially recognise the Libre as an alternative to finger pricks before driving.
I was diagnosed T1 when I was 18, am now 24. After 3 years of the stress of further education and rather out of control sugars I've been trying to get it under control again. My end goal at the moment is being able to get my HGV medical. My current finger pricker I've had since my diagnosis and doesn't have a memory function, ideally I'd love a CGM but my consultant doesn't seem to have any knowledge about them. In fact at my last appointment in January I asked him about what memory meters where available and he was pretty evasive around that question too.
Been toying with self funding, but it just seems a complete non-goer due to my income at the moment.
caelite said:
Wow, that's 2 bits of really good news I've heard tonight just from clicking on this thread.
I was diagnosed T1 when I was 18, am now 24. After 3 years of the stress of further education and rather out of control sugars I've been trying to get it under control again. My end goal at the moment is being able to get my HGV medical. My current finger pricker I've had since my diagnosis and doesn't have a memory function, ideally I'd love a CGM but my consultant doesn't seem to have any knowledge about them. In fact at my last appointment in January I asked him about what memory meters where available and he was pretty evasive around that question too.
Been toying with self funding, but it just seems a complete non-goer due to my income at the moment.
Check your CCG's criteria for being prescribed the Libre. In some ways you might be in a better place perversely with a higher HbA1c because some of the CCGs have criteria like "testing at least 8 times a day, high A1c, demonstrate improvement after 6 months to make it permanent" and tbh you can't not improve with the Libre, it's that good.I was diagnosed T1 when I was 18, am now 24. After 3 years of the stress of further education and rather out of control sugars I've been trying to get it under control again. My end goal at the moment is being able to get my HGV medical. My current finger pricker I've had since my diagnosis and doesn't have a memory function, ideally I'd love a CGM but my consultant doesn't seem to have any knowledge about them. In fact at my last appointment in January I asked him about what memory meters where available and he was pretty evasive around that question too.
Been toying with self funding, but it just seems a complete non-goer due to my income at the moment.
T1 of 22 years here, diagnosed at 9 and now 31. Has my FreeStyle Libre in a week now and it’s a revolution!
Had my fair share of issues through my own fault though, currently going through the process of having my retina reattached as I got rhetinopathy a few years ago! 100% better at looking after myself now and on the road to recovery.
Had my fair share of issues through my own fault though, currently going through the process of having my retina reattached as I got rhetinopathy a few years ago! 100% better at looking after myself now and on the road to recovery.
caelite said:
Tankrizzo said:
PositronicRay said:
Interesting, in the early days lots of tales re reliability, infected sore sites and supply issues. Do have to calibrate it and do the DVLA recognise it as valid yet?
If you just use the Libre on its own, no, you don't calibrate it - but I use the xDrip+ app which requires daily fingerprick calibration, and it's pretty much on the money (0.6mmol/l deviance when I did it an hour ago). I've been using the Libre for about three years I think and have only had one slightly infected site which cleared up with gentle care and a bit of Savlon. Abbott seem to have sorted out the supply issues now; I ordered last Tuesday and received by Friday. You can now buy them off the shelf at Superdrug and Asda pharmacies too (as well as your usual local pharmacy who can order them in for you, but those two are the cheapest).DVLA-wise a recommendation has been made by the Government Driving Advisory Group but nothing's happened yet, I believe a change of law is required for them to officially recognise the Libre as an alternative to finger pricks before driving.
I was diagnosed T1 when I was 18, am now 24. After 3 years of the stress of further education and rather out of control sugars I've been trying to get it under control again. My end goal at the moment is being able to get my HGV medical. My current finger pricker I've had since my diagnosis and doesn't have a memory function, ideally I'd love a CGM but my consultant doesn't seem to have any knowledge about them. In fact at my last appointment in January I asked him about what memory meters where available and he was pretty evasive around that question too.
Been toying with self funding, but it just seems a complete non-goer due to my income at the moment.
it was great as it had BT on it and it paired to my phone and gave me a chart on an app. maybe you can get one that way. I was in Essex.
The GP's in New Zealand have never heard of it and i have now got one that needs a lead that never came with it to work.
i haven't looked into the libre, but if it's that easily knocked then playing football and being on my bike is not going to help it.
Type 1 since the age of 3 in 1978. Currently on NovoRadipd and Levimer, was on twice a day injections about 40 years until Christmas just gone.
I’ve been an early Libre adopter can second all the positive comments mentioned here about it, complete game changer.
I’ve been an early Libre adopter can second all the positive comments mentioned here about it, complete game changer.
Edited by bing on Wednesday 8th August 23:45
Out of interest how was your diagnosis handled back then?
My bro (also a PHer - I’ll link him to this thread) was diagnosed a decade later in 88 or 89 as an 18-month old and the poor bugger very nearly died. It seemed that such infant onset of T1 was very rare then and there were multiple failures to diagnose.
Two of our other siblings were also since diagnosed T1 but later in childhood at 7-9 years old.
Guess I should count myself one of the lucky ones if there’s a genetic aspect to it.
My bro (also a PHer - I’ll link him to this thread) was diagnosed a decade later in 88 or 89 as an 18-month old and the poor bugger very nearly died. It seemed that such infant onset of T1 was very rare then and there were multiple failures to diagnose.
Two of our other siblings were also since diagnosed T1 but later in childhood at 7-9 years old.
Guess I should count myself one of the lucky ones if there’s a genetic aspect to it.
Edited by theboss on Sunday 12th August 21:14
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