Type 1'stars R Us

smc4761 said:

Morning my fellow colanders and pumpers, hope you are all having a good day.

having a strange morning as has been the case most of this week. I normally have brekkie and around 2 hours later hit a large spike BG rising from around 6 to 10 before dropping back to 6 at lunch.

All week however BG have hardly risen at all after brekkie. Having issues however this morning. BG of 6.1 on waking, had brekkie and 1.5 hours later Libre showing 4.1 and heading down. I was just about to head out as well, so disonnected pump, had a cuppa 3 ginger nuts. That will do the trick, eh no. 20 minutes later still at BG of 4.1. O try 8 jelly beans that will sort it. Eh no. 20 mins later and BG now down to 3.6, even with finger test. Pump has been disconnected all this time

So another cuppa and a couple of spoonfuls of sugar and that should work.

Well thats my morning spoiled, looks like I will just go out in afternoon instead.

Dont you just hate all this bleeding uncertainty being a type 1

Click to expand...

Suspect your pump’s been hacked by @knikki’s Martians

SueJB said:

Hi @Mel dCP A cgm sounds good and I've googled to try and get reviews of the different ones. They are challenging to understand but I get that self funding for the sensors is eye-wateringly expensive. The other problem might be, as a Luddite, I don't have a functioning mobile phone.

Click to expand...

I debated whether I could afford a libre, cheaper than Dexcom, for ages before I got one. I went for a one-off purchase of a reader and wondered why I hadn’t done it sooner. The improved control with the libre was one of the reasons I now have it prescribed.

helensaramay said:

I hope Mel won’t mind me saying even she hasn’t perfected it an she has Elvis to help.

Click to expand...

Absolutely. As I’ve repeated ad nauseam it’s hard being an internal organ, with all its complex feedback systems that involve the whole body. I adore tech and gadgets, so am relishing the challenge of getting Elvis set up just right, but I’m not going to stress about the odd spike from foot on the floor or miscalculations in carbs when I go out for a meal with my friends and family. I’m doing the best I can and that’s good enough.

Hot! Hot! Hot! has Gone! Gone Gone! Now it is Rain! Rain! Rain! Bucketloads of it all night and still going.
Had a successful first sleepover by the 2 year old grandson whilst son and dil had a night away. Bed by 7:30pm he slept all night til 5am! Very strange hearing a little voice shouting get up nana! Managed a lovely straight line on the Libre all night, and a very early brekkie and a morning playing Thomas the Tank engine has helped to continue that.
Waved him off home, so looking forwards to a relaxing lunch and a glass or two of red before a much needed afternoon nap.
Being a nana-best thing ever!

becca59 said:

Hot! Hot! Hot! has Gone! Gone Gone! Now it is Rain! Rain! Rain! Bucketloads of it all night and still going.
Had a successful first sleepover by the 2 year old grandson whilst son and dil had a night away. Bed by 7:30pm he slept all night til 5am! Very strange hearing a little voice shouting get up nana! Managed a lovely straight line on the Libre all night, and a very early brekkie and a morning playing Thomas the Tank engine has helped to continue that.
Waved him off home, so looking forwards to a relaxing lunch and a glass or two of red before a much needed afternoon nap.
Being a nana-best thing ever!

Click to expand...

I agree, the very best! But can be exhausting too - how did we survive when it was 24/7?

helensaramay said:

However, I will keep going back to the fact that these contraptions are new and few people have them.

Click to expand...

I'm in the NHS Lothian area, which has one of the most liberal libre scripting policies anywhere - any T1 who wants it, gets it (health is devolved so the rules here are different to NHS England).

I followed the numbers a bit when the policy first came in. They said they wrote to 1800 folks saying you're eligible, contact us if you want it. Only 600 replied.

Even now, a couple of years down the line, out of about 3000 T1s in the area, about 1000 are using it.

A Scottish technical advisory group which did some costing and benefits analysis for NHS Scotland anticipated about 25% uptake, which, whether by coincidence or not, is about the same that NHS England is catering for.

The overall impression I'm getting is that as it's clear that there is not going to be a sudden demand by every T1 to have it, there's a fair amount of scope for T1s who do want it to push their docs a bit. Partha Kar, who played a part in writing the RMOC guidelines, accepted they were restrictive, but was the best that could be done given the politics involved, but that they were to be regarded as fairly flexible and not written in stone. So I reckon that a bit of gentle persuasion by an engaged patient might see their doc bend the rules a bit.

helensaramay said:

@SueJB you can get Libre Readers which would mean you don’t need a phone but this adds a little more to the expense.
Before I got Libre on prescription, I was paying for one to use 2 weeks out of 6. This gave a great insight into my BG profile which I could act on during the other 4 weeks.
Libre without attachments like Miaomiao is not a CGM because it doesn’t alert you when you are high or low but it does give you that insight between finger pricks.
To be honest, even a one off sensor could be useful. Perhaps a kind friend or family member could loan you a phone for 2 weeks.

However, I will keep going back to the fact that these contraptions are new and few people have them. This forum is not a typical cross section of people with diabetes and this thread is probably even less representative. We are people with diabetes who have more interest than most in our diabetes and, for the most, people who have been managing it for a long long time and no one has perfected it. I hope Mel won’t mind me saying even she hasn’t perfected it an she has Elvis to help.
Sue, you are doing very well ... much better than most with diabetes and definitely better than I was when I was as new to it as you.

Click to expand...

Thanks @helensaramay about the unrepresentative nature of the colanders on here. I hadn't really thought about that. You lost me on unfortunately when you brought in Miaomiao and that's the point, I have absolutely no idea what it is and what it's for. This seems to be like another learning curving in T1 dictionary. I realised after my little melt down yesterday that I'm doing really well but as a teacher "she could do better" is not an option. I'm a perfectionist and set myself high standards.

I don't reckon I'd get funding or even partial funding although I'm not sure how that works. I'm going to see if I can borrow something from the diabetes clinic and if I think it's magic, I'd be quite happy to buy what's needed but not sure what I actually would need.

As far as I can make out I need to buy:

• an endless supply of things to stick on my arm
• some kind of reader which I reckon is expensive
• ???? Any ideas???

Scott-C said:

I'm in the NHS Lothian area, which has one of the most liberal libre scripting policies anywhere - any T1 who wants it, gets it (health is devolved so the rules here are different to NHS England).

I followed the numbers a bit when the policy first came in. They said they wrote to 1800 folks saying you're eligible, contact us if you want it. Only 600 replied.

Even now, a couple of years down the line, out of about 3000 T1s in the area, about 1000 are using it.

A Scottish technical advisory group which did some costing and benefits analysis for NHS Scotland anticipated about 25% uptake, which, whether by coincidence or not, is about the same that NHS England is catering for.

The overall impression I'm getting is that as it's clear that there is not going to be a sudden demand by every T1 to have it, there's a fair amount of scope for T1s who do want it to push their docs a bit. Partha Kar, who played a part in writing the RMOC guidelines, accepted they were restrictive, but was the best that could be done given the politics involved, but that they were to be regarded as fairly flexible and not written in stone. So I reckon that a bit of gentle persuasion by an engaged patient might see their doc bend the rules a bit.

Click to expand...

Thanks @Scott-C those numbers are interesting. Shoud l I talk to my vet then about getting a cgm?

MeiChanski said:

6.3 and I finally ripped off my expired sensor

Click to expand...

I hate prying sensors and tape off, so I usually let my friend do it. She's so good at it that the old sensors regularly stay on my arm 3 or 4 days after they've expired if I don't see her for a couple of days

Daphne917 said:

3. Ringos - onion ring things from Aldi

Click to expand...

Yes! Those too
I actually have them in the house right now . Nowadays, when I buy crisps, take them out of the bag and freeze them in very small portions. Makes portion control a lot easier for me and they keep very well in the freezer.

Oh, and Dorito's sweet chili, with lots of zaziki. Ate a lot of them when I must've been diabetic already but didn't know. No wonder I finished at least a 1.5l water bottle every night...

becca59 said:

Hot! Hot! Hot! has Gone! Gone Gone! Now it is Rain! Rain! Rain! Bucketloads of it all night and still going.
Had a successful first sleepover by the 2 year old grandson whilst son and dil had a night away. Bed by 7:30pm he slept all night til 5am! Very strange hearing a little voice shouting get up nana! Managed a lovely straight line on the Libre all night, and a very early brekkie and a morning playing Thomas the Tank engine has helped to continue that.
Waved him off home, so looking forwards to a relaxing lunch and a glass or two of red before a much needed afternoon nap.
Being a nana-best thing ever!

Click to expand...

You should like the best-nana ever. It's mizzling here. It's lovely and cool and the grass looks greener already, but that's probably the light.

helensaramay said:

Sorry @SueJB I did not explain the difference between a CGM and a flash monitor.
Both read your BG throughout the day.
A flash monitor, reads the BG and stores the values on the sensor until you swipe (or flash it). Upon the swipe, it downloads the last 8 hours of data (including the latest value) to your reader. This allows you to see what has happened to your BG between the swipes.
A CGM reads the BG and immediately transmits it to your reader. This means your reader can check in real time to see if your BG is high or low and tell you with an alarm.
Libre is a Flash monitor. Dexcom is a CGM. CGMs are more expensive.
A number of people on the forum have “pimped” their Libre by adding a reusable device called a Miaomiao. This converts the Flash monitor into a CGM - it reads the BG from the sensor and transmits it, in real time to your reader.
I do not have the Miaomiao as I feel I am sufficiently sensitive to highs and lows so can not justify the additional cost.

You say you need to buy an endless supply of sensors. I disagree. You don’t have to wear a sensor all the time. You can wear one for 2 weeks, analyse the data and make some tweaks to your insulin dose and timing over those two weeks. Those two weeks are likely to give you some amazing insight. If you can afford one later, you can do it again for another two weeks.
A reader can either be a phone (which has other uses) or the Libre reader which is dedicated to reading the Libre ... and cheaper than a phone.

Click to expand...

WOW eeeeeh! Thanks for the info but will defo need to reread it a few times because I'm still not getting it quite!

SueJB said:

Thanks @Scott-C those numbers are interesting. Shoud l I talk to my vet then about getting a cgm?

Click to expand...

It's definitely worth discussing freestyle libre with your docs (a scripting decision will normally be made by the hospital consultant, not the GP, although there seems to be local variations). Cgm like dexcom is much more difficult on script.

I've attached the England-wide policy on libre, item 1 says if you test more than 8 times a day for valid clinical reasons for 3 months, you're in, no ifs or buts, and the NHS T1 clinical lead says he wants to hear from anyone denied it so he can speak to the hospital.

Item 4 could be a runner too. It refers to psychosocial circumstances, which could cover a whole range of things, like intense bolusing worries leading to limiting food choices, hypo anxiety etc.

Libre doesn't have all the bells and whistles like hypo alerts, but it's still very useful. No hypo alerts during the day isn't an issue because it only takes a couple of seconds to scan it so you still get a heads up on dropping levels, and at night it helps assess basal rate and how things are looking before bed.

It's very simple too. Spring loaded applicator, and the reader is about the size of a pager, click one button to switch it on then just hold against the sensor for a few seconds. Mines has lasted about 3 years now. 58 quid if not on script.

Sensors are about £47 last for 2 weeks.

It's not plug-and-play: your lines won't suddenly level out overnight by using it, but as you get used to it, you start using the info it gives to see ways of smoothing things out.

I suppose it may be luck of the draw on the attitude of the consultant. If they're old school, they might resent patients deciding what they need, but most are pretty enthusiastic about this stuff and may be willing to bend the rules for an engaged patient.

The paper at the link below is a real world study of libre use in 900 patients in my area (I'm one of them and I think @Alison54321 might be one too!), it's been getting a bit of attention amongst doctors. If I was in your position and working up an argument for getting it on script, I'd maybe be tempted to take it along to the consultation, say that I have worries which may well be addressed by libre and it seems to have been very effective for the people in the study. Might not do any harm to have a sketch at the ABCD training videos linked below and mention that too - docs seem to be more willing to help engaged patients.

Good luck!

https://abcd.care/dtn/education

https://link.springer.com/article/10.1007/s00125-019-4894-1

Knikki said:

@Mel dCP oh man spicy Nik-Naks I have consummed so many packets of those over the years

Click to expand...

Nik Naks are vegan - I didn't know that until today. I must get some!

Fairygodmother said:

I agree, the very best! But can be exhausting too - how did we survive when it was 24/7?

Click to expand...

We were young!

I’ve found the perfect picture to use as the app icon for my next build of my Loop app!

@SueJB it all sounds very complicated, it isn’t. You get a starter pack with a reader which is a one off and you use that 24/7 and a sensor which you stick on your arm. Each sensor lasts for 14 days you then purchase a new one to replace it. If you have an up to date phone you can use that instead of a reader. I don’t and my limited resources as a retiree just go on purchasing sensors every 14 days. I am using savings to keep me going as I am not yet eligible under the NHS as I am doing well. (Which includes many readings way out of recommended numbers which I don’t worry about) I decided that it was worth it and feel I would rather wear a sensor before spending money on clothes, going away, out for meals etc. Not that I don’t do those things, but if I was short that month the sensor would take priority. It is the window into my health and makes my life so much easier. I don’t have add ons. Money won’t stretch that far, but if I ever get it on the NHS then that will be where my the money I am saving on sensors goes. Go for it, it is a window into the real world of diabetes control. Cheap when you really think about it.

@SueJB I agree it all sounds very complicated BUT - as an avowed non-techie I can tell you that Libre has helped no end. As @Scott-C and @helensaramay have explained, the sensor is attached to your body (for most people, your arm, though @Mel dCP has worn hers in different places) put in place by the spring loaded device which comes with each sensor and pushes the tiny filament into your flesh so it can read the bg in your interstitial tissue. That's why its results are a little behind actual finger pricks - maybe 10 - 15 minutes - as it doesn't read actual blood values.

I use the Libre reader as I find it convenient; I have a phone which I could use but I don't. Some of the sensors vary a little in their accuracy; you learn to recognise and adapt, and as others have said, what it gives you is trends. For instance, I discovered that my bg was going low overnight with consequences the following day, something I couldn't have known otherwise. I self-funded initially and when the criteria changed, I was given it on script as I would've been finger-pricking at least 8 times a day otherwise, so I met that particular criterion, as I suspect you would. The other big thing it's done for me is to allow me to adjust at any time, so I'm happy to inject more insulin according to an uptrend if needed, and chuck in more carbs if I see I'm going low. If I've got a reliable sensor I also bolus according to it, though I check it against finger pricks at least once a day and always use my bg monitor if I'm hypo as you need real-time info to deal with that.

In your position I'd defo talk to my GP/consultant about Libre on script; it's seriously easy to use and you'll get instruction before you're given one. It'll never give anyone perfect control, but for lots of people, me included, it's allowed big improvements. Good luck!

I was enjoying my sleep and I’ve encountered a hypo - 1.9. The only symptom I felt was a very faint hunger shake. I wasn’t expecting to hypo, I thought it was the “time to eat” shake. I am starting to think that the libre might be helping. It did give me some indication where bg was going so in theory, it could have been avoided. I’ve been taking the same amount of insulin for that breakfast for a couple of months, only this time I’ve hypoed dangerously for it. One of diabetes’ mysteries eh? I guess some detective work for today.

MeiChanski said:

I was enjoying my sleep and I’ve encountered a hypo - 1.9. The only symptom I felt was a very faint hunger shake. I wasn’t expecting to hypo, I thought it was the “time to eat” shake. I am starting to think that the libre might be helping. It did give me some indication where bg was going so in theory, it could have been avoided. I’ve been taking the same amount of insulin for that breakfast for a couple of months, only this time I’ve hypoed dangerously for it. One of diabetes’ mysteries eh? I guess some detective work for today.

Click to expand...

The insulin was for breakfast, but you were enjoying your sleep? Did you take the breakfast insulin while still half asleep? or am I missing something?