some feedback on using the FreeStyle Libre sensor

[Scott-C]

When I get agitated at diabetes being inconvenient I try to remind myself that in the past those like my dad would have loved technology like this to take the worry and guess work out of life!

Indeed! I can still remember using the strips pictured below which involved comparing colours on the strip with colours on the side of the tub. No decimal points involved!

Looking at those again after all this time is a good reminder that, while it is great having what we have now, the bigger picture in the long run is basically seeing whether we're generally between 4 to 7, without sweating the finer points too much.

 

[Bon83]

Indeed! I can still remember using the strips pictured below which involved comparing colours on the strip with colours on the side of the tub. No decimal points involved!

View attachment 22803


Looking at those again after all this time is a good reminder that, while it is great having what we have now, the bigger picture in the long run is basically seeing whether we're generally between 4 to 7, without sweating the finer points too much.

I do know what you mean - we seem to desire micromanagement. My dad seemed to know so much about his low symptoms and really early signs, he probably got it wrong sometimes but there was nothing else to do. I try to spot things too - with back up from testing. I seem to feel quite lousy from the rapid drop in the first 2 hours of fast acting insulin. If I can reassure myself it will pass and I won't go too low I can sometimes get over this without eating anything else. Does anyone else have this? Is the answer less units?

 

[TheBigNewt]

Hi BigNewt! The starter pack (reader plus 2 sensors) was £133.29 excluding VAT which T1s don't pay, plus £4.12 shipping. Just bought another 2 sensors at £48.29 each plus the £4.12 shipping.

So about $25 per sensor. And they last how long, like 2 weeks? That would be about $2/day and if that saves you, say, 2-3 test strips (about 20 cents each) that's not horrible at all. I just have a thing about something attached to my arm all the time. We don't have Libre here, they use Dexcom which I'm pretty sure costs a bit more. But that will ring your phone if you go below 4.0 especially at night that would be good. I wonder why Libre doesn't do that. Anyone?

 

[Sibyl]

So about $25 per sensor. And they last how long, like 2 weeks? That would be about $2/day and if that saves you, say, 2-3 test strips (about 20 cents each) that's not horrible at all. I just have a thing about something attached to my arm all the time. We don't have Libre here, they use Dexcom which I'm pretty sure costs a bit more. But that will ring your phone if you go below 4.0 especially at night that would be good. I wonder why Libre doesn't do that. Anyone?

No, $62.25 each for the sensors.

 

[Scott-C]

I seem to feel quite lousy from the rapid drop in the first 2 hours of fast acting insulin. If I can reassure myself it will pass and I won't go too low I can sometimes get over this without eating anything else. Does anyone else have this? Is the answer less units?

Difficult to answer without knowing the full background, but two possibilities spring to mind.

First, if you're recently dx'd, you're maybe still honeymooning, so there's a chance you're correctly calculating for the bolus, but then your beta cells think, oh, some food, and squirt out some insulin on top, which takes you down quicker.

Second, I tend to pre-bolus about twenty minutes before a meal to give the insulin time to get into the system, but I've noticed that if its a low GI meal, I'll drop in the first couple of hours more than I'd like, reckon it's because the insulin is kicking in before the high fibre food has broken down to glucose, so now I tend to shorten the timing of the pre-bolus depending on the GI of the food. If you're going low but it eventually balances out, it kind of suggests the food is playing catch up with the insulin (even though it's normally the other way around!). So, maybe think about how far in advance you're pre-bolusing.

It might also be, as you say, that you need less units. If you take fewer, don't drop in the two hours, and are fine after five hours, then that would be the case. On the other hand, if you end up too high at four or five hours after, it's maybe more the digestion/pre-bolus timing which is governing it.

Of course, it can be subtler things, which you wouldn't necessarily think about until they're pointed out. The nutritionist on my DAFNE course mentioned that the amount you chew affects things as well Sounds obvious once it's pointed out but I hadn't thought about it before. If you chew well, food starts digesting in the mouth because of the amylase in saliva (chew a starchy food long enough and it'll start tasting sweet because the amylase breaks the starch down to sugar), so once it gets to the stomach it's already part of the way into turning into glucose, so will get into your blood quicker, whereas if you wolf it down without chewing that much, the stomach is starting from scratch and will take longer to break down.

Don't know if it's been mentioned, but seeing as you're trying the Libre, there's a good book (kindle and paperback), Sugar Surfing by Stephen Ponder, dealing with cgm. There's a lot of dingbat books out there about diabetes, but this one is mentioned approvingly by the Edinburgh Centre for Endocrinology and Diabetes, in the leaflet linked below, and they know their stuff. Ooh, I've just noticed on the leaflet that Gary Scheiner, the guy who wrote the much recommended Think like a a pancreas book, has also written one on cgm, will have to have a look at that.

http://www.edinburghdiabetes.com/s/CGM-guide.pdf

 

[tim2000s]

So about $25 per sensor. And they last how long, like 2 weeks? That would be about $2/day and if that saves you, say, 2-3 test strips (about 20 cents each) that's not horrible at all. I just have a thing about something attached to my arm all the time. We don't have Libre here, they use Dexcom which I'm pretty sure costs a bit more. But that will ring your phone if you go below 4.0 especially at night that would be good. I wonder why Libre doesn't do that. Anyone?

It's not a CGM is why it doesn't trigger an alarm on the phone. The sensor stores data and it is read via NFC when a reader or android phone is passed over it. Start up costs if you have an android phone with NFC is the cost of the sensor.

The best way to think about it is like fingerpricking with continuous data. You choose when and where you check, it's not constantly on your back.

 

[catapillar]

So about $25 per sensor. And they last how long, like 2 weeks? That would be about $2/day and if that saves you, say, 2-3 test strips (about 20 cents each) that's not horrible at all. I just have a thing about something attached to my arm all the time. We don't have Libre here, they use Dexcom which I'm pretty sure costs a bit more. But that will ring your phone if you go below 4.0 especially at night that would be good. I wonder why Libre doesn't do that. Anyone?

The dexcom doesn't ring your phone if you go below 4. If you have a dexcom 5 and the dexcom app on your phone set up to receive the CGM readings than if your phone is in range to pick up the readings, charged and not on silent, then the app will set off an alarm if you drop below whatever you have set as your low level. It's an alarm going off, so yes it is an noise emanating from your phone. But it isn't anyone or anything ringing your phone.

 

[caram]

i'm in northern ireland and also have just had the 3 sensors for the free trial and am receiving 2 more. last week i walked past a doorframe and ripped it out of my arm with a week left to go and i was gutted. it was incredibly helpful to be able to check so quickly and easily at any time and to know whether it was going up or down, however the readings were always a few mmols off, higher or lower which was a shame as it could mean giving a rescue dose thinking it's too high when it's not and then going hypo due to this or vice versa. watch out for the doorframes.

 

[Scott-C]

last week i walked past a doorframe and ripped it out of my arm with a week left to go and i was gutted

Doorframe incidents are a rite of passage for libre newbies! You're not a true Libran till you've lost one on a doorjamb!

 

[Bon83]

Doorframe incidents are a rite of passage for libre newbies! You're not a true Libran till you've lost one on a doorjamb!

Oh gosh that's an expensive door accident! I tentatively got the sensor out and read everything terrified of damaging it because of the cost. I do think it is a bit more robust than I think - I think someone else mentioned the size of the needle :0. I got husband to actually press but I didn't even know he had done it haha. It will be visible but I've given up caring about all that. My fingers look a state and I get bruises from needles certain times of the month.

A few others have mentioned protection from a plaster etc especially when swimming. I may try this.

 

[Bon83]

Difficult to answer without knowing the full background, but two possibilities spring to mind.

First, if you're recently dx'd, you're maybe still honeymooning, so there's a chance you're correctly calculating for the bolus, but then your beta cells think, oh, some food, and squirt out some insulin on top, which takes you down quicker.

Second, I tend to pre-bolus about twenty minutes before a meal to give the insulin time to get into the system, but I've noticed that if its a low GI meal, I'll drop in the first couple of hours more than I'd like, reckon it's because the insulin is kicking in before the high fibre food has broken down to glucose, so now I tend to shorten the timing of the pre-bolus depending on the GI of the food. If you're going low but it eventually balances out, it kind of suggests the food is playing catch up with the insulin (even though it's normally the other way around!). So, maybe think about how far in advance you're pre-bolusing.

It might also be, as you say, that you need less units. If you take fewer, don't drop in the two hours, and are fine after five hours, then that would be the case. On the other hand, if you end up too high at four or five hours after, it's maybe more the digestion/pre-bolus timing which is governing it.

Of course, it can be subtler things, which you wouldn't necessarily think about until they're pointed out. The nutritionist on my DAFNE course mentioned that the amount you chew affects things as well Sounds obvious once it's pointed out but I hadn't thought about it before. If you chew well, food starts digesting in the mouth because of the amylase in saliva (chew a starchy food long enough and it'll start tasting sweet because the amylase breaks the starch down to sugar), so once it gets to the stomach it's already part of the way into turning into glucose, so will get into your blood quicker, whereas if you wolf it down without chewing that much, the stomach is starting from scratch and will take longer to break down.

Don't know if it's been mentioned, but seeing as you're trying the Libre, there's a good book (kindle and paperback), Sugar Surfing by Stephen Ponder, dealing with cgm. There's a lot of dingbat books out there about diabetes, but this one is mentioned approvingly by the Edinburgh Centre for Endocrinology and Diabetes, in the leaflet linked below, and they know their stuff. Ooh, I've just noticed on the leaflet that Gary Scheiner, the guy who wrote the much recommended Think like a a pancreas book, has also written one on cgm, will have to have a look at that.

http://www.edinburghdiabetes.com/s/CGM-guide.pdf

Thanks for the advice

 

[Scott-C]

Oh gosh that's an expensive door accident! I tentatively got the sensor out and read everything terrified of damaging it because of the cost. I do think it is a bit more robust than I think - I think someone else mentioned the size of the needle :0. I got husband to actually press but I didn't even know he had done it haha. It will be visible but I've given up caring about all that. My fingers look a state and I get bruises from needles certain times of the month.

A few others have mentioned protection from a plaster etc especially when swimming. I may try this.

Yes, a plaster is always a good idea. The glue on the Libre is sticky enough to keep it on for the full two weeks (people had problems in that regard when it was first introduced but they seem to have changed the glue now), but popping a plaster on top smoothes out the edges so it's less likely to snag. There's lots of option, tegaderm and so on, but my local chemist does Molnlycke Mepore 7 x 8 cm at 17p each and they do fine.

I lost my second one to a doorjamb (after three days..aargh!) and realised that I had put it too much to the side of my arm where it was more exposed, so since then have made sure it's far round on the back of my arm so it's less likely to catch. People at work think I've got some sort of phobia about doors!

You can also funk it up a bit. There's a small cottage industry doing fancy plasters at a price:

https://www.zuckerschmuck.com/english/fixtape-to-paste-over-libre-enlite-catheters/

http://shop.pepmeup.org/category/freestyle-libre-sticker

https://www.funkypumpers.com/product/freestyle-libre-sticker/

 

[kitsunerin]

Does anyone know if this is available on the NHS? I am on very low income and so jealous of you guys haha!

 

[Bon83]

Does anyone know if this is available on the NHS? I am on very low income and so jealous of you guys haha!

I'm not sure - I've seen some others mention a trial?

 

[JacquiMorrison]

Does anyone know if this is available on the NHS? I am on very low income and so jealous of you guys haha!

It's not unfortunately, I've emailed them in January when I did my trial and they said not for the near future so maybe worth checking up in 6 months or so. I presume the company need more feedback or more money before they can involve the NHS?

 

[JacquiMorrison]

Does anyone know if this is available on the NHS? I am on very low income and so jealous of you guys haha!

Also you could just buy one every few months? Just do help you along

 

[JacquiMorrison]

Question about the FreeStyle Libre removal I have to get my partner to remove it because I'm so squeamish I don't have the balls to rip it off or even gradually remove it because I know there's something inside me.

Any of you guys got a technique for taking it off? I've tried the baby wipes and baby oil but still hate taking it off haha - minor problem I know

 

[Sibyl]

Question about the FreeStyle Libre removal I have to get my partner to remove it because I'm so squeamish I don't have the balls to rip it off or even gradually remove it because I know there's something inside me.

Any of you guys got a technique for taking it off? I've tried the baby wipes and baby oil but still hate taking it off haha - minor problem I know

Yeah it's tricky with it being on the back of your arm isn't it?! I just tease the rim up as far round as I can and then grab hold and yank it off real quick! It doesn't hurt but the mere thought of it does make me squeamish too! Lol.

 

[kitsunerin]

It's not unfortunately, I've emailed them in January when I did my trial and they said not for the near future so maybe worth checking up in 6 months or so. I presume the company need more feedback or more money before they can involve the NHS?

Fair enough! I hope it will be in a few years or so then, it would be a good idea! And I think I will try and save up then

 

[Sibyl]

Just had my first glitch! Went through the whole insertion process but the actual sensor ended up on the floor without its centre and although it didn't hurt I ended up bleeding like a stuck pig! Bathroom looked like Sweeny Tod had been in there! Lol! Just phoned Abbott care line and Anthony is sorting it. Got an email before I put the phone down to say packaging for return of sensor and replacement on their way! Good service or what?!