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Type 1 Continuous Glucose Monitoring

4

4onthefloor

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Dear all, I'm new to the site and would welcome any advice on the following:
I have been a type 1 diabetic for 30 years taking insulin injections and recently I've been experiencing a lack of hypo awareness. I used to get early warning signs such a tingling lips or speaking very quickly but I've not been noticing these lately and have been having a few hypos, even going as low as 1.8 and 2.3. I've been doing some research and like the idea of some of the continuous glucose monitors that give warning alerts if your levels start to drop below a set level, unfortunately, it appears such monitors are not available on the NHS and would need to be self funded.
Is there anyone out there who has either self funded or managed to get one on the NHS? If so, have they improved your control?
My existing regime consists of finger pricking and an optium xceed monitor, however, this only provides a snapshot of what level you are at the time of the test and only works if you actually take a test rather than CGM which constantly monitors your levels and identifies if your levels are going up or down and issues you with alerts.
Any advice welcomed.
 
@4onthefloor can only give you my own experience of the Libre, which is FGM but it does tell u everything from the last 8 hours if asleep or too busy. In short, seeing what is going on with your BGs gives you the info to start working out the why and then what strategies you want to follow to tackle any problems. Info is power, as they say! If you are struggling with hypo awareness, especially overnight then CGM with alarms are a must. During the day with Libre you can usually see the lows coming. Yes CGM/FGM can improve control.
 
It's an incredible tool and the peace of mind is amazing. I had my Dexcom G5 less than 3 weeks after I was diagnosed so unfortunately I can't offer a comparison.

It sounds weird but I literally feel naked when I'm not wearing it these days (even if it's only for a few minutes).
 
I'm self funding a Dexcom G5, not for lack of hypo awareness, but more for greater understanding of how various factors affect my levels over time.

My control is definitely better and my understanding is increasing. I love being able to stick my phone to the car windscreen and have near real-time feedback on my BG while driving or have it vibrate at a level of my chosing when I'm on my bike.

Down sides? Not on the NHS, and not cheap, but sensor life can be extended by simply restarting the sensor after the 7 day period and by sticking it down with Rocktape or Opsite Flexfit film. Also, having had mine 2 months now, I probably look at my readings too much and need to chill out a little.

With hindsight, maybe the Dexcom G4 would have been a better bet as the transmitters last longer and with an xDrip I could have used an Android phone instead of an iThingy, but I wouldn't be without one now.
 
Lack of hypo awareness is something that might make NHS funding a bit more likely, so it is worth discussing this with your consultant - it's worth a try.

Having said that, I have no hypo awareness & I have self funded a dexcom. It is amazing to have something constantly watching over you & alerting when you are low.

It hasn't improved my control or awareness though. It's not magic, it's just technology. It's still down to hard work of the user to achieve those improvements.
 
Having spent 26 years without any form of continuous monitoring, and one with it, I was able to reduce my Hba1C by >1%. I'm still hypo aware so I don't need it for that purpose, but the improvement in my management is enormous, mainly due to being able to pre-empt situations.

If you are willing to put the work in, it makes a huge difference. If not, it's a very expensive way to fingerprick.
 
@4onthefloor,

As @catapillar says funding may be available through the NHS, there's a member on here called @yingtong who got funding for a CGM last year whilst moving over to a insulin pump, like you he had lost his hypo awareness symptoms.
 
noblehead said:
@4onthefloor,

As @catapillar says funding may be available through the NHS, there's a member on here called @yingtong who got funding for a CGM last year whilst moving over to a insulin pump, like you he had lost his hypo awareness symptoms.
Click to expand...
usally only funding is given if your pump supports it i know alot of people who has cgm funding for medtronic pump >.<
 
Type1Lad said:
usally only funding is given if your pump supports it i know alot of people who has cgm funding for medtronic pump >.<
Click to expand...

Not sure which insulin regime the OP is using, but certainly worth pushing for a pump if they are currently on injections as lack of hypo awareness fits the NICE criteria.
 
Thank you all for the info.
I have been thinking about a pump also but I'm not sure if I am overreacting to a recent hypo. Generally I am well controlled and have a very similar daily regime, week in week out, so why do I have a low blood sugar out of the blue. It is this "out of the blue" issue that is worrying me and the fact I didn't notice the signs early enough. Having a constant monitor to warn me really appeals to me, especially if the cost equates to a couple of quid a day.
 
@4onthefloor, no harm in running the idea of a pump past your diabetes team to see what they say. Good luck anyway :)
 
With regard to an insulin pump, a friend of mine recently converted to an accu check insight pump, that appeared to be the model the local NHS Trust was pushing due to the quality of after care, or so they said. However, he mentioned that due to the cost of the pump, he had to get it insured on his house insurance as the NHS would only provide one pump. Is this the norm or is this scenario mirrored in other NHS areas?
 
Yes that's correct, you have to insure your pump and this can be done on your household insurance.
 
steve_p6 said:
@4onthefloor can only give you my own experience of the Libre, which is FGM but it does tell u everything from the last 8 hours if asleep or too busy. In short, seeing what is going on with your BGs gives you the info to start working out the why and then what strategies you want to follow to tackle any problems. Info is power, as they say! If you are struggling with hypo awareness, especially overnight then CGM with alarms are a must. During the day with Libre you can usually see the lows coming. Yes CGM/FGM can improve control.
Click to expand...
Hi, what is FGM? I just saw an advert for a Libre and notice that the sensors cost just under £60 - ouch! I recently had a sensor on for 5 days via my diabetes clinic and by day 5 I really just wanted to rip the plaster off! maybe it could have been situated in a berter place than the back of my hip... anyway, how do you get your sensors? do you buy them or do you get them on scripts? I don't think I could in my area. thx, Emma
 
Hi Emma

Its Flash Glucose Monitoring, ie you only get the data upload if you scan. Sensors are £48 plus postage (diabetics get them VAT free.).

You can put them most places, the arm is the official location.

Not available on NHS so most are self funded direct from freestyle website.
 
Hello,
I've tried Medtronic and Dexcom and both gave me different rates of success so I'd definitely recommend seeing if you can get a free trial - I know you can if you are on a Medtronic pump at my hospital. The Medtronic rep comes in and they lend you the stuff and give you one or two sensors free.
I preferred Dexcom for accuracy personally but I couldn't afford to keep it up and it was ALOT of work.

I'd be interested to hear more about The HypoBand. I saw it on the forum yesterday and I think this might be something you'd consider too when weighing up your options. I just googled it and apparently it detects cold sweats.

Do users recommend it? is it uncomfortable? Can you wear it out of the house? What levels are people being alerted to hypos? Any software issues with iPhones? Do you need a computer (I only have iPhone/iPad)
 
4onthefloor said:
Dear all, I'm new to the site and would welcome any advice on the following:
I have been a type 1 diabetic for 30 years taking insulin injections and recently I've been experiencing a lack of hypo awareness. I used to get early warning signs such a tingling lips or speaking very quickly but I've not been noticing these lately and have been having a few hypos, even going as low as 1.8 and 2.3. I've been doing some research and like the idea of some of the continuous glucose monitors that give warning alerts if your levels start to drop below a set level, unfortunately, it appears such monitors are not available on the NHS and would need to be self funded.
Is there anyone out there who has either self funded or managed to get one on the NHS? If so, have they improved your control?
My existing regime consists of finger pricking and an optium xceed monitor, however, this only provides a snapshot of what level you are at the time of the test and only works if you actually take a test rather than CGM which constantly monitors your levels and identifies if your levels are going up or down and issues you with alerts.
Any advice welcomed.
Click to expand...
Hi
 
Hi 4onthefloor,I have a CGM funded by the NHS as I had lost my 'hypo' awareness,I have Medtronic system used in conjunction with 640g pump.i no problem getting funding for a pump,but it took me best part of 12months to got funding for aCGM and that was down to great support from DSN and Endo,I have been type 1 for 54 years now.Thankfully I no longer with combination of the pump and CGM no more hypo problems and it has been life changing.Good luck with your diabetes team,I am sure they will be great help to you.
 
steve_p6 said:
Hi Emma

Its Flash Glucose Monitoring, ie you only get the data upload if you scan. Sensors are £48 plus postage (diabetics get them VAT free.).

You can put them most places, the arm is the official location.

Not available on NHS so most are self funded direct from freestyle website.
Click to expand...
ok, thanks...that makes more sense now :) when you scan do you get date for the previous ?? minutes/hours, or just at that time?
Yes, the arm seems a much more sensible place and would probably not need the extra plaster over it - I think that is what was bothering my skin so much. My clinic would love to give these out because long term they make sense.
Would it seem reasonable to maybe use them periodically to get a better overview of control rather than wearing them back to back iyswim?
 
keep_going said:
ok, thanks...that makes more sense now :) when you scan do you get date for the previous ?? minutes/hours, or just at that time?
Click to expand...
The Libre captures data continuously for 8 hours (that's the amount of memory it has). What it shows you is the measurement at the point in time and the 8 hours before this. If you scan every 8 hours you have a continuous record of everything it has recorded.
 
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