Type 1'stars R Us

MeiChanski

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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?

I was up until 6am, I had breakfast then went to sleep for a bit. 3.5hrs later I woke up for a pee break. I decided to test and the 1.9 showed up. It does sound like I was drunk.
 
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Alison54321

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I was up until 6am, I had breakfast then went to sleep for a bit. 3.5hrs later I woke up for a pee break. I decided to test and the 1.9 showed up. It does sound like I was drunk.

Oh that explains it, you just stayed up all night. I was wondering what happened. 1.9 is a bit scary, fortunately you woke up.
 
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MeiChanski

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Oh that explains it, you just stayed up all night. I was wondering what happened. 1.9 is a bit scary, fortunately you woke up.
Yes, my anxiety has revisited so I've been staying up most nights. I stayed at 7.3 after the hypo so it worked out nicely :)
 

SueJB

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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
You are really super kind @Scott-C and so is everyone. Well I've got til November to get my head round all this and work out an approach to the consultant. They all seem so young in OCDEM, not being disparaging, but hope I can convince someone that I'm a worthy cause:D
 
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SueJB

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@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.
@becca59, thanks, you're a real sweetpea and the info is great and real and I understand it. Very encouraging:)
 

SueJB

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@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!
Another great and encouraging reply, thanks so much for writing @hh1. I really think what I'm hearing is what I'm going to try to go for. Big thanks:)
 

LooperCat

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You are really super kind and so is everyone. Well I've got til November to get my head round all this and work out an approach to the consultant. They all seems so young in OCDEM, not being disparaging, but hope I can convince someone that I'm a worthy cause:D
I’d advise going to your appointment with a printed agenda, like a business meeting, effectively. Research the criteria and state which bits you think you’d qualify under, and request a trial. I find dressing smartly sets things off on a footing that you’re having a conversation between equals, rather than you being inferior in status. Leave them with a copy for your records as well. I’ve got absolutely everything I’ve asked for using this approach with my clinic. Log every test, dose and correction, the more input they’re seeing you put in, the better your case. And if they can see that you’re having to do such ridiculous amounts of work to maintain your good levels, you can claim it’s impacting on your ability to live a normal life - that’s how I got my pump in the end. The simplest way to get a Libre is to test 8+ times a day between now and your clinic appointment and be able to prove you’ve done so x
 

therower

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Good evening all.
A very rainy day. British weather!!!! almost as predictable as T1 diabetes:):).
Had a lovely Full English in a quaint little town which was new on the list.
Nantwich.
Then a short trip down the road to Crewe. Hmmmmm.
Then spent a a totally enjoyable few hours in a room full of type 1’s. You could smell the insulin :):).
It was great meeting a few guys and gals off this forum.
Plans for another meet up are already under way I believe, so roll on the next meet up.

If the young lady who turned up late and joined us ( I thought your name was Jenny but my wife says Emma ) gets to read this post, it was great to meet you and you would be a wonderful addition to this forum.:)
 
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ert

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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.
That must have been frightening MeiChanski.
 

ert

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I bought new clothes today in the John Lewis sale two sizes bigger, to cover the insulin weight bounce, as nothing fitted me except for my running shorts and t-shirts. My weight's stabilised and as much as I'd like to fit into my old wardrobe, stable blood sugars are more important. I've looked like a personal trainer for the last month.
 

MeiChanski

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That must have been frightening MeiChanski.
Yes it was, I have been running higher for around 1.5 months trying to retrieve my hypo awareness back. So far, not much success but I'll keep pushing. :)
 

MeiChanski

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I bought new clothes today in the John Lewis sale two sizes bigger, to cover the insulin weight bounce, nothing fitted me except for my running shorts and t-shirts. My weight's stabilised and as much as I'd like to fit into my old wardrobe, stable blood sugars are more important. I've looked like a personal trainer for the last month.
Oh fancy, I miss shopping in John Lewis, especially the beauty department. :hilarious:
 

Daphne917

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Good evening all.
A very rainy day. British weather!!!! almost as predictable as T1 diabetes:):).
Had a lovely Full English in a quaint little town which was new on the list.
Nantwich.
Then a short trip down the road to Crewe. Hmmmmm.
Then spent a a totally enjoyable few hours in a room full of type 1’s. You could smell the insulin :):).
It was great meeting a few guys and gals off this forum.
Plans for another meet up are already under way I believe, so roll on the next meet up.

If the young lady who turned up late and joined us ( I thought your name was Jenny but my wife says Emma ) gets to read this post, it was great to meet you and you would be a wonderful addition to this forum.:)
We’ve had no rain in the sunny South West - just had tea outside
 

Scott-C

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I'd advise going to your appointment with a printed agenda, like a business meeting, effectively.

"Minutes of the Metabolic Unit meeting - November 2019.

1. The Committee agreed to prescribe the Freestyle Libre flash glucose monitoring system to the patient @SueJB , partly because her record keeping demonstrated a commitment to sensible use of the product, and partly because the notoriously militant T1 @Mel dCP had used her newly acquired bus licence to round up equally militant T1s who then proceeded to superglue themselves to the Metabolic Unit doors, chanting, "#when do we want Sue on script - we want Sue on script NOW". On balance, the committee decided it would be easier to put Sue on script, instead of calling the police."
 

LooperCat

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"Minutes of the Metabolic Unit meeting - November 2019.

1. The Committee agreed to prescribe the Freestyle Libre flash glucose monitoring system to the patient @SueJB , partly because her record keeping demonstrated a commitment to sensible use of the product, and partly because the notoriously militant T1 @Mel dCP had used her newly acquired bus licence to round up equally militant T1s who then proceeded to superglue themselves to the Metabolic Unit doors, chanting, "#when do we want Sue on script - we want Sue on script NOW". On balance, the committee decided it would be easier to put Sue on script, instead of calling the police."
I’m also a pretty keen demonstration attendee for causes I believe in. Haven’t got arrested yet though. #bucketlist

I am having an actual BEER. First one in 18 months of low carb and I came across Michelob Ultra in Sainsbury’s at 2g carb for a 330ml bottle. It’s surprisingly nice. Only 3.5% but I’ve got gin for PROPER drinking. Just fancied something cold and crispy :)
 
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ert

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My new tea-drinking phase is going well. I'm onto my sixth cup. What is everyone's favourite brand of loose tea? I'm in need of recommendations.
 
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LooperCat

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My new tea-drinking phase is going well. I'm onto my sixth cup. What is everyone's favourite brand of loose tea? I'm in need of recommendations.
Depends how you like your tea. We drink Turkish leaf tea black, but for milky tea, Glengettie.
 

ert

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Depends how you like your tea. We drink Turkish leaf tea black, but for milky tea, Glengettie.
Wow. I've never heard of either. Turkish and Welsh. I really like the sound of them. Now I have to track them down. Thank you.