cgm anxiety

[bjohn54]

Hi everyone,
recently my bag was stolen in a pub and my insulin and phone was in my bag.
I tried to find my bag so I can check my sugar level if I was in safe range but people just asked me to leave the place.
I was in panic that I have to walk or do something without knowing my sugar level especially after drinking.
I started using cgm 2 years ago and I never realised that how much i was relying on cgm until then.
Does anyone have experience of anxiety because of not being able to use cgm or something?

 

[Nicola M]

I’m on a hybrid closed loop system so my CGM works with my insulin pump to keep me in range. Definitely get anxious if my sensor fails and/or isn’t working for some reason as I am someone who does heavily rely on my CGM to keep me within range. Crazy to think there was a time before a CGM was a thing.

 

[plantae]

It’s surprising how quickly I’ve come to depend on my CGM. My BSL pre and pos-prandial peaks and troughs happen at weird times (maybe because I take Creon) so finger pricks pre-meals and at 90 or 120 minutes after meals capture no where near the amount of information I’d like and looking at my CGM graphs I don’t think I could come up with a good schedule for finger pricks. My relatively high protein and fibre intake probably makes things harder to predict as well.

Anyhow I have a diagnosed anxiety disorder which is medicated but the anxiety is always there in the background. I’m usually anxious about just about everything, but every time I change my sensor I’m super anxious because of (a) just changing the sensor in the first place, even though it’s easy; and (b) the readings for the first 8-16 hours, for me, are all over the place and I cannot rely on them even for a general trend (this is true for me for both the Dexcom G6 and Libre 2 but I don’t usually get nocturnal compression lows with the Dexcom which were another source of anxiety when I was using the Libre.)

Although I spend most of my work in an office or at home these days I do still have to do field work in relatively remote areas collecting specimens, surveying etc. On these occasions I’d be super anxious without the CGM because the physical activity — crawling over logs, walking up hills, ducking under branches etc — can send me hypo pretty quickly. I know because my CGM alerts me. I’m basically hypo unaware and don’t usually feel much, if any, different at all. I’m not sure how I’d cope doing the field work knowing (since getting the CGM) that I can go hypo very quickly without doing anything particularly strenuous. I’m anxious doing it with the CGM

 

[Tony337]

I had my bag pinched in gran canaria a couple of years ago and it had my reader and phone in it....

I took my blood glucose monitor with me (in my hotel) but soon twigged i could put the app onto my wifes phone for the rest of the holiday.

I feel your pain though and realised how reliant i am which as i'm in my 50th year of diabetes is a bit surprising......

Tony

 

[EllieM]

I've only been using a cgm for a few years, but admit I'm quite reliant. But in the lasy year I've had one 3 day period and one 7 day period when sensors/amd/or transmitters failed early and I had to do without. I just did a lot of glucometer tests. I'm actually more frightened by losing my glucometer because my cgm isn't always accurate at very high or very low readings and I find I really need a back up check then.

 

[In Response]

I intentionally take CGM breaks to stop my self becoming too dependent on it.
I have recently taken a semi-CGM break: I usually self-fund the CGM which talks to my pump but due to (self inflicted) supply problems, I had to resort to a Libre for 2 weeks. When I was a full time Libre user, I installed xDrip so I had my BG on the front screen. If not used it on my new phone so was back to scanning and no calibration. It also meant no auto-suspend on my pump so I either had to keep a closer ye on my levels or bolus/manually suspend) more accurately. It has been a useful break.

 

[Prancy]

Hi everyone,
recently my bag was stolen in a pub and my insulin and phone was in my bag.
I tried to find my bag so I can check my sugar level if I was in safe range but people just asked me to leave the place.
I was in panic that I have to walk or do something without knowing my sugar level especially after drinking.
I started using cgm 2 years ago and I never realised that how much i was relying on cgm until then.
Does anyone have experience of anxiety because of not being able to use cgm or something?

I can totally relate. I‘ve had a friend tell me that I was obsessed with my CGM. I try to be reasonable about it, but with the way my BG works, I have to be very aware. I would never consider having my CGM on my phone, where it could be stolen or lost. Using my phone as a backup, might be ok. Before I had a CGM, I had a meter with me all the time. Even with a CGM, I have 3-4 backup meters, in case the CGM malfunctions.

A couple of years ago, I was on my way to a Paul McCartney concert (a huge event I had looked forward to my entire life) when my CGM went into Sensor Updating mode. I stopped at a friend‘s house and changed the sensor, to have it also fail! Anyway, I had to take a meter to the concert with me to check BG through out the night. Even set my alarm to awake me every hour to check BG, since I had drank alcohol at the show. I didnt let it ruin my evening, but definitely caused anxiety.

I wasn‘t as hypervigilant before I went on a pump. With a pump, things can go up or down pretty quickly. On MDI, the long acting insulin gives you a buffer. So, as long as I’m on a pump, I see no way to not be very focused. I definitely think it causes me anxiety. I’m planning on doing some things to help with that.

 

[Marie 2]

I take purposeful breaks. Early on when it looked like I would be without one for a few days because of a transmitter failure I realized how dependent I had become. I did fine before one and I actually wake if I drop too low at night so that's not a problem. But that first night without one I was really anxious that I wouldn't have my Dexcom alerts. So now since I restart my Dexcom when I switch out the sensor I take anywhere from a 1-3 day break. ( I even did a 7 day break once). It feels like I want to prove to myself and reassure myself that I am fine without it? Generally I check my CGM quite a bit and do what's called sugar surfing. It means I respond to what my CGM is doing and making small corrections as needed. It honestly is a little of a relief to know I am perfectly fine not knowing what my BG level is 24/7. I think I fingerstick more than I ever did before a CGM when I go without one, but it has reassured me I do fine without one.

 

[Prancy]

I take purposeful breaks. Early on when it looked like I would be without one for a few days because of a transmitter failure I realized how dependent I had become. I did fine before one and I actually wake if I drop too low at night so that's not a problem. But that first night without one I was really anxious that I wouldn't have my Dexcom alerts. So now since I restart my Dexcom when I switch out the sensor I take anywhere from a 1-3 day break. ( I even did a 7 day break once). It feels like I want to prove to myself and reassure myself that I am fine without it? Generally I check my CGM quite a bit and do what's called sugar surfing. It means I respond to what my CGM is doing and making small corrections as needed. It honestly is a little of a relief to know I am perfectly fine not knowing what my BG level is 24/7. I think I fingerstick more than I ever did before a CGM when I go without one, but it has reassured me I do fine without one.

You are very brave. I wish I could do that and may have to. My transmitter is out of warranty and I’m not inclined to replace it right now, because if I do I won’t be in a position to get a new one for a Medtronic 780G or Dexcom 6, whichever route I decide to go. I‘m just not sure, plus there’s going to be a hefty out of pocket expense, regardless. I have my long acting insulin on hand….it really stresses me to think about it. I’m glad your experiences have gone so well. I stay in auto mode, except for when I’m in warm up mode.

 

[hboyt]

I take purposeful breaks. Early on when it looked like I would be without one for a few days because of a transmitter failure I realized how dependent I had become. I did fine before one and I actually wake if I drop too low at night so that's not a problem. But that first night without one I was really anxious that I wouldn't have my Dexcom alerts. So now since I restart my Dexcom when I switch out the sensor I take anywhere from a 1-3 day break. ( I even did a 7 day break once). It feels like I want to prove to myself and reassure myself that I am fine without it? Generally I check my CGM quite a bit and do what's called sugar surfing. It means I respond to what my CGM is doing and making small corrections as needed. It honestly is a little of a relief to know I am perfectly fine not knowing what my BG level is 24/7. I think I fingerstick more than I ever did before a CGM when I go without one, but it has reassured me I do fine without one.

Interesting. Can you explain sugar surfing? I woulda thought the cgm and pump automatically corrects anyways?

 

[hboyt]

I can totally relate. I‘ve had a friend tell me that I was obsessed with my CGM. I try to be reasonable about it, but with the way my BG works, I have to be very aware. I would never consider having my CGM on my phone, where it could be stolen or lost. Using my phone as a backup, might be ok. Before I had a CGM, I had a meter with me all the time. Even with a CGM, I have 3-4 backup meters, in case the CGM malfunctions.

A couple of years ago, I was on my way to a Paul McCartney concert (a huge event I had looked forward to my entire life) when my CGM went into Sensor Updating mode. I stopped at a friend‘s house and changed the sensor, to have it also fail! Anyway, I had to take a meter to the concert with me to check BG through out the night. Even set my alarm to awake me every hour to check BG, since I had drank alcohol at the show. I didnt let it ruin my evening, but definitely caused anxiety.

I wasn‘t as hypervigilant before I went on a pump. With a pump, things can go up or down pretty quickly. On MDI, the long acting insulin gives you a buffer. So, as long as I’m on a pump, I see no way to not be very focused. I definitely think it causes me anxiety. I’m planning on doing some things to help with that.

I have my cgm on both my pump and phone so hopefully if the phone got stolen I'd still have the pump to see the cgm on...I like the phone feature so don't have to dig out my pump everytime to check what the cgm is saying

 

[Marie 2]

@hboyt I am on the patch pump Omnipod, and my preference is not being on their loop system. Don't get me wrong, loop systems are great, but when you have really great control, they won't meet your expectations of BG level maintenance. I enter information as I want into my pump and decide dosing. I have several basal programs that I set up and select under certain circumstances or as life changes and I change my basal rates. DP or no DP, snorkeling etc.

So I do what I call sugar surf. I don't like going above 140 and especially above 160. I think a lot of it is in the timing of dosing. So if I start trending up and go above 140, I am watching if my arrow is trending up and will get on my exercise bike which halts a climb pretty quickly. Or if it looks like I will go above 150 I am adding more insulin because for me my guess at dosing must have been wrong. Unless of course I know the specific reason I am climbing like eating and taking insulin at the same time instead of prebolusing the right amount. I am retired. I do not low carb, I am a vegan. My A1c has for years been between 32-34. My TIR is 96-98% between 3.9-8-9.

Sugar Surfing by Stephen Ponder. Besides the book you can purchase, a free booklet can be downloaded, plus a wealth of free information is on his site. He is really well known and respected in our type 1 world.

Diabetes Education | Sugar Surfing

Thoughts from Stephen Ponder, MD for people with type 1 diabetes. Teaching the Dynamic Approach (Sugar Surfing) using continuous glucose monitoring (CGM).

www.sugarsurfing.com

 

[hellobear007]

You are very brave. I wish I could do that and may have to. My transmitter is out of warranty and I’m not inclined to replace it right now, because if I do I won’t be in a position to get a new one for a Medtronic 780G or Dexcom 6, whichever route I decide to go. I‘m just not sure, plus there’s going to be a hefty out of pocket expense, regardless. I have my long acting insulin on hand….it really stresses me to think about it. I’m glad your experiences have gone so well. I stay in auto mode, except for when I’m in warm up mode.

You should check out the Anubis transmitter for G6. They have made it so the batteries are replaceable and the warm up is only 50 minutes... Can also extend sensor life, although I have not tried doing that.

 

[Prancy]

You should check out the Anubis transmitter for G6. They have made it so the batteries are replaceable and the warm up is only 50 minutes... Can also extend sensor life, although I have not tried doing that.

Oh, I would, but I currently use Medtronic 670G. I’m now debating if I should upgrade to Medtronic 780G or switch brands and get Tandem pump and Dexcom G6. (Also have option of staying with what I have, but I’ll need a new transmitter that‘ll work with my 670G really soon.) I need my pump and CGM to be paired, so I can have auto delivery. In USA, right now that’s the only options, pretty much. I’m not sure about Omnipod (Pump).

 

[Marie 2]

@Prancy In the US the Omnipod 5 can pair with the G6 for a loop system. They are working on Omnipod 5 being able to pair with the G7, but it can't yet. It feels like in the US more people like the Tandem the best of the Loop systems. The Medtronic 780 (Smartguard) doesn't allow for some of the variations of controls people are used to on previous models. For the people that have done the DIY Loop everyone that does so, seems to love that.

 

[hellobear007]

Oh, I would, but I currently use Medtronic 670G. I’m now debating if I should upgrade to Medtronic 780G or switch brands and get Tandem pump and Dexcom G6. (Also have option of staying with what I have, but I’ll need a new transmitter that‘ll work with my 670G really soon.) I need my pump and CGM to be paired, so I can have auto delivery. In USA, right now that’s the only options, pretty much. I’m not sure about Omnipod (Pump).

I have the 780g but am not funded for closed loop. I do however use the Dex One ( which I turn into a G6 with the Anubis transmitter) .

From what I have read from USA members on Facebook groups, the Dexcom is the preferred option for sensor as there are ways to extend its life and make it cheaper out of pocket! I have heard great things about the T Slim pump and wish I had chosen that last year when given the choice.



I am sorry you have to consider cost above which device suits you best .

I do pay for the Anubis out of pocket but that is a small fraction of what you guys are faced with.

However if you do decide to switch pumps & sensor, the Anubis is definitely something to check out

 

[Prancy]

I appreciate the info. There’s a lot to consider.

I guess my favorite features are having my pump stop delivering when it sees I’m getting low and giving me more insulin when it sees I’m getting high. I‘ve really struggled with my 670G almost the entire time I’ve had it, but lately it’s doing great. I can’t complain at all. Lol. That’s how it goes.

 

[Marie 2]

@hellobear007 Cost really depends on what insurance you have in the US. My Dexcom is completely free. I extend mine out of preference for an extended sensor as needing less calibration. A new free pump most of us get to choose what we want every 5 years. The insulin and insertions sets etc would all be free for it.

 

[aseriesofunfortunateevents]

I intentionally take CGM breaks to stop my self becoming too dependent on it.
I have recently taken a semi-CGM break: I usually self-fund the CGM which talks to my pump but due to (self inflicted) supply problems, I had to resort to a Libre for 2 weeks. When I was a full time Libre user, I installed xDrip so I had my BG on the front screen. If not used it on my new phone so was back to scanning and no calibration. It also meant no auto-suspend on my pump so I either had to keep a closer ye on my levels or bolus/manually suspend) more accurately. It has been a useful break.

I saw your post yesterday and it was the first time i had heard about xDrip. I installed it on my phone, what a gamechanger.

 

[Paulaah]

Good morning. I also installed Shuggah on my phone after reading this thread. And then I “borrowed “ my husband’s Apple Watch and added it on to the front screen. So now I have a cgm that I can just glance at easily. I’ve got to say not only has it been a game changer (thanks to this thread for giving me the idea), it’s taken the anxiety away from me because there’s a lot of faffing when you have to physically scan. I was in and out of my bag the whole time . Eg when out walking, at a restaurant etc.

So thanks again for the tip off. I love this forum .