[moon]

Got my first CGM Friday (Dexcom G6) and just now got the courage to insert it. How easy! Even for a needle phobe! It is paired and am in the 2-hour warm and wait period before getting readings. I am so stoked!

I had told my endo and the supply house that I didn't want the G5 and would wait until they were shipping the G6 to Medicare patients. So glad I did because the G6 is beyond easy - and lots smaller.

I've been conservative with insulin, so conservative that I've yet to get a <100 reading any time of day. To be able to see what is going on in my body all the day long will be incredible and I think help me get a handle on how best to bolus. Since my carbs are so low, I don't often bolus and perhaps my best guess I:C (1:15) isn't accurate. Maybe I should bolus 1:10 or even less.

Don't have a smart phone and hope the Dexcom receiver will be good enough not to drive me to overkill (getting a smart phone just for my Dexcom data!)

 

[moon]

Wow. Warm-up just ended and Dexcom showed 144 bg.

I haven't eaten anything yet today (it's after noon) because I wanted to compare with meter when it was relatively stable with nothing going on. Checked with my Aviva and it was ... 144 on the nose!

Now I get to eat (yay chaffles!) and see what food and my bolus with few carbs will do. It's hard to overstate how exciting this is, and how optimistic I am about what this will mean for my control.

Kid. New toy.

 

[moon]

That initial 144 was deceptively perfect. Readings were off the rest of the day with the Dexcom staying up there, once even kicking off my 180 alarm when meter said 140 or something. Called Dexcom next morning they said to calibrate. That helped, then I needed to calibrate again in the afternoon and again this morning. If that doesn't do it, Dexcom will send a new sensor.

Am not discouraged because I see the incredible possibilities and chalk this up to learning curve, possible bad/wonky sensor, whatever. My real discouragement is that my body is doing such weird bg things. Not behaving at all as it used to.

I did buy a used iPhone off Amazon just so I could use that vs the Dexcom receiver and load other software. Too bad G6 software isn't available for my iPads. Just might end up the only person on the planet with an iPhone w/out plan, used only via wifi! Wonder how long it will take me to cave? My flip phone is nervous.

 

[justdave]

I've been using a Dexcom G6 for about 4 months. I'll share my experiences in hopes that they help someone.

TLDR; It's not all "sunshine and roses" but I'd say that, overall, things are better than before I had it. Certainly my HA1C numbers are much better. I WAS getting 8s and 9s, now 6s and 7s. My wife says I am noticeably "less grumpy"... happy wife = happy life.

This thing is expensive - about half again as much as my insulin pump supplies cost.

Let me be clear, it's a very annoying device - sometimes waking me 6-8 times in a night. It beeps during meetings and especially when I am trying to talk quietly with someone. It beeps for low Bg, High Bg, Falling Bg, Rising Bg, Low battery, you're too far away from it, sensor is about to expire and probably a few other things I am not remembering. It's so annoying that I have nick-named it "little bitch." It seems like it is always complaining about something.

I find that I am sort of "micro-bolusing" now. Before the CGM I'd check my Bg, read 25 (450) and give myself 20 units, now the CGM beeps at 9.5 (170) and I give myself 4 units, then 30 minutes later 4 units more, and so on. The total insulin is about the same, but my Bg does not go super high anymore.... and I fiddle with everything MUCH more often. I do wish that it would track insulin-on-board; with all the small boluses it's very hard to keep track of the overlaps.

I've experienced WAY more lows than pre-CGM; occasionally 4-5 in one day. Having tighter control means I am "close to the edge" more often than I used to be. Raising the alert threshold from the default 3.1 (55) to 4.2 (75) helped. I live in the country so I sporadically do intense exercise - chopping firewood, that sort of thing - so when my Bg is falling, it's sometimes falling fast. I keep a jug of juice handy and, so far, no death (I hate it when that happens).

I've hooked it up to TidePool and it says I am having low Bg about 3-4% of the time; my endocrinologist says that's "pretty good" but I pointed out to him that I only need to die once and dead people have very good HA1C scores - apparently, he doesn't have much of a sense of humour. I am getting better at controlling it but there have been some scary times. Being prepared is essential.

As far as finger pricks go, I am doing many fewer. They are definitely not eliminated entirely but I sometimes go 24 hours without one. Before the CGM, I pricked 4-5 times every day. I don't miss them at all.

The CGM is not entirely trust-worthy. I could probably eliminate 50% of my remaining finger pricks if I had more confidence in the device. Of 12 sensors, I had one that never worked correctly (just gave sort of random numbers) and another that worked well for about 7 days and then sort of "lost its mind" (gapping and giving insanely incorrect readings). I also had one that just quit on day 9 but the remaining 9 sensors worked pretty consistently for the advertised 10 days. The moral here is "don't just do whatever the robot tells you."

The CGM literature says that 90% of the time it's within 20% of actual Bg and that's probably technically accurate. Two things about that though: 1) 20% error is quite a lot when your Bg is 4 (72) and 2) the OTHER 10% of the time can be quite troublesome. Other people on the forum have said that recalibrating helps but that has not been my experience; my experience is that a sensor that is significantly off just keeps going off, recalibrating only seems to help short term.

The 20 minute lag (CGM is about 20 minutes behind the meter) takes some getting used to. You need to always consider the direction and rate of change. That's not something that I ever thought about pre-CGM. The CGM has an arrow that is supposed to tell you direction and (roughly) rate of change; I am not sure how they calculate that but it's often incorrect. I now always look at the graph and decide for myself what the direction and rate of change are.

Considering the lag, the many small boluses, the direction and rate of change, carb to insulin ratios, effect of exercise, and etc., there's quite a lot of (fairly simple) math that needs to be done. If that's not something that you can do easily, then a CGM will make things much more complicated.

But I guess the most telling thing for me was when there was a mix-up in shipping my CGM supplies and I had to stop using it for about 10 days. OMG it was so hard! My expectations had been reset by the CGM and it was next to impossible to match them without the device. Once you get used to a CGM, it's very hard to go back to finger pricks alone.

For all of its foibles, inconveniences and expenses, I think it does actually "make my life better" which is what's really important.

 

[mbuster]

Hello justdave, welcome to the forum.

Very informative, always good to hear of others real life experiences of anything related to diabetes. Myself, as a non-insulin using type 2, probably have no need for a CGM, but would like to try one none-the-less, just to see my BG response to eating, exercise, sleeping, stress, etc. I was under the impression that I would know my BG level every 5 minutes. Am I understanding that you are saying there is about a 20 minute lag between a finger stick and the CGM reading? I am assuming this is for similar reasons of lag time of alternate blood testing sites (ie forearm, thigh, etc) vs the finger stick but just a longer lag time. Have you found that sensor placement sites (arm vs leg vs belly etc) can have varying lag times as well or is it fairly consistent irregardless of sensor placement? I know that the introduction of the CGM has been a great improvement of controlling BG. Looks like room for improvement to avoid over/under compensation, maybe further advancements in the CGMs will shorten that lag to reduce or hopefully eliminate that 10% troublesome time. My hat is off to all insulin users, I can only imagine the extra efforts you have to put in.

Just curious if you also use diet as part of your BG control regimine?

 

[justdave]

Hello justdave, welcome to the forum.

Very informative, always good to hear of others real life experiences of anything related to diabetes. Myself, as a non-insulin using type 2, probably have no need for a CGM, but would like to try one none-the-less, just to see my BG response to eating, exercise, sleeping, stress, etc. I was under the impression that I would know my BG level every 5 minutes. Am I understanding that you are saying there is about a 20 minute lag between a finger stick and the CGM reading? I am assuming this is for similar reasons of lag time of alternate blood testing sites (ie forearm, thigh, etc) vs the finger stick but just a longer lag time. Have you found that sensor placement sites (arm vs leg vs belly etc) can have varying lag times as well or is it fairly consistent irregardless of sensor placement? I know that the introduction of the CGM has been a great improvement of controlling BG. Looks like room for improvement to avoid over/under compensation, maybe further advancements in the CGMs will shorten that lag to reduce or hopefully eliminate that 10% troublesome time. My hat is off to all insulin users, I can only imagine the extra efforts you have to put in.

Just curious if you also use diet as part of your BG control regimine?

I understand that the lag time for the CGM is because it is inserted into fat cells whereas a finger prick tests the blood directly. I have not noticed any difference by site, but I have not experimented with that. As for diet, type 1 is a bit more flexible than type 2... it becomes a "balancing act" rather than "carb aversion." That said, each dish requires subtly different insulin to balance. An extra half hour of wood chopping has an outsized effect on Bg. What I am am saying is that the balancing is easier if you eat the same things, day in and day out; do the same exercise, day in and day out, etc. This is what my endocrinologist calls a "monkish lifestyle." I try to be consistent but, honestly, I'm pretty bad at it.

 

[mbuster]

A balancing act is a very good description. I too am imperfect with my act as well. JMO we all, diabetics and non-diabetics alike, need to try to keep our scales balanced and not overload either side too much then try to counterbalance. What I've seen in all the reading I've done is that too much insulin in circulation is bad too, especially related to heart issues. Looking forward to reading more of your posts.

 

[Chuckh1958]

I just joined this forum. I've been type 1 since 1983. I take basaglar once a day and Humalog at meals based on a carb ration.

I stared using my first CGM yesterday - a dexcom g6. How long does it take to start getting accurate readings? I've gotten readings from the Dexcom of 150 when my actual bg was 70. Thats not very accurate or helpful. I'd want to get an alarm before it got that low. Another time the dexcom was reading 155 when it was actually 280. Again not very helpful. I'd want to be correcting at 280 but not at 155. Each time when it was way off I calibrated it with the actual number.

Any tips for using the Dexcom would be appreciated. My main reason for getting it was that I had a severe low in my sleep a few weeks ago that caused a grand mal seizure (first ever). When I came to I found my wife had called 911 and I was getting IV dextrose from the EMTs. They measured my bg at 35 (lowest ever recorded for me). I need this thing to be accurate to wake me long before I ever get that low again.

 

[justdave]

Hi Chuck;
I too have woken up with EMTs hovering over me... definitely not something you want to do again. Glad you made it out the other side
I am now up to almost 9 months on my Dexcom. The only "tips" I have are:
1) raise the low level alarm - the default is much too low, IMO.
2) the DexCom software is rubbish - try alternatives like TidePool.... there are others
3) be prepared. I keep a jug of juice beside both my bed and my office desk. The Dexcom complains equally about highs and lows... but the consequences are very different.
More of a gripe than a tip - the sensors come with an insane/unnecessary amount of waste/packaging.
I've also noticed that the "automatic re-order annual subscription" dings my credit card WAY before they actually ship the sensors, which would be illegal except that I am sure they have something in that encyclopedia of small print that you agree to that says they will do it.
Some sensors are definitely better than others. I hear that Dexcom will replace any bad ones... but that's not really the point, is it?
My experience is that re-calibrating only helps short-term.
Honestly, and I hope this is not too discouraging, I still have quite a lot of trouble.... don't trust the robot.
It's a bit like having a newborn child in the house - it does not really get better, but you do get used to it.

 

[Chuckh1958]

Are you saying there is other software that will connect to the G6's transmitter and read your (pseudo)-BG levels? I looked at tidepool in the google play store but the description didn't say anything about integrating with a CGM. I don't want to install any more apps than I need to as I'm already down to 1 gb left on the internal storage of my phone. If it does provide the same level of integration though via Bluetooth and the app is better, I may give it a try and uninstall the Dexcom software. I want to be sure though that whatever software I use will sound an alarm (that cannot be silenced) in the middle of the night to wake me up before my BG gets anywhere near 35 again. The Dexcom software has already done that once.

I have to wonder why after 35+ years with type-1 DM I am suddenly becoming so brittle. Nothing's changed but my age.

 

[Chuckh1958]

Are there any other CGM forums/discussions that are more active than this? Most of the discussions here are years old. I dont do facebook though and never will. I won't use platforms that control the narrative for their own purposes.

 

[justdave]

No, that is not what I am saying. You Dexcom is remembering what you BG levels are (I think it remembers for 30 days). You can upload all that data to a web site and then graph it. This can be very handy for finding patterns. One of the (many) options is to overlay the last 7 days as 7 lines on the same graph. When you do this, you might notice that you always go high at 6-7 AM. Knowing this, you could adjust your basal rate from 6-7 AM if you are using an insulin pump or you could set an alarm and give yourself a small bolus at 5:30 if you are managing it manually. There are a number of websites that allow you to upload and graph the data. Dexcom has one web site and TidePool has another (and there are others too). That is the software that I was talking about.

 

[justdave]

TidePool is developing an "automatic pancrease" in a research program called "looping"... it allows the integrated management of a CGM, and an insulin pump. I am not eligible to participate in the program because I am not in the USA, but you might be. I understand that it takes some commitment and a certain amount of "tech savvy" at this point but it's getting better all the time.

 

[justdave]

It's been a while, so I thought I'd give an update. Although my HA1C has continued to be in the low 6s (as opposed to 8s and 9s before the CG), I continue to experience an unnerving number of lows. I raised my "low alert threshold" to 4.7 and that helped a lot. That said, I still have 3 or more "exciting" lows per week. A side effect of all of these lows (besides the possibility of death) is that I have been gaining weight because I keep packing in the sugar to rise out of the lows. 30 lb in about as many weeks - that's not good. I was very frustrated with my endocrinologist who said he didn't know anything about CGMs and could not advise me. So I asked my MD for a referral, she referred me to a woman who specialized in gender hormones... not really the same thing at all. So I did some of my own research and found the BC Diabetes Clinic in Vancouver. They specialize in supporting people who want to "Loop." Looping is an open-source artificial pancreas project that uses an iPhone, a small radio transmitter, a Dexcom 6 CGM and Insulet omnipod insulin pumps. There are soft/hardware variants for Android and Medtronic, etc... but I am following the crowd using the most supported hard/software. It is very much a DIY, non-FDA approved approach - so, if you are not comfortable with that, then it's not for you. I am still skeptical, but there are LOTS of people saying that Looping has changed their life so... hey, maybe it'll work for me too. The one thing that everyone says is that their CGM does not wake them every night anymore. If that's the only benefit I get, then I will be grateful. I am just beginning the rather long (6 months) process of getting set up. There's a lot to it: calculating Insulin Sensitivity Factor, carb-insulin ratios, exercise effects, becoming disciplined enough to enter everything into the system accurately. For example, I have always used a carb-insulin ration of 1u = 10 carbs which is close enough and easy enough to calculate in my head. But now I'll have the power of an iPhone to do that math ... a CI ratio of .97 or 1.03 is now possible. It has cost me about $1000 out-of-pocket for the hardware so far. That's a lot. I could have cut a few more corners (e.g. used iPhone) but $1000 for my health and well-being seems like money well spent. My extended insurance covers 80% of the omnipods (just like they did my old Medtronic supplies) so that stays the same... well, not quite because they have a limit to how many pods they will supply per month and I am right at the edge of that limit (big fat guy). In Canada, MD visits are free so I get 1 hr per week for 6 months with the endo. That, in itself, is super valuable. I am not naive, I know that I am being used as a subject in a study that they expect to publish; if I wander too far from the Looping topic for my health care, they lose their focus. But I am willing to accept that they need to get their job done too. I also accept that what I am doing is inherently risky, but so is having diabetes. Anyone interested in the possibility of Looping is directed to the Facebook forum called "Looped". Well, that's where I am today. I'll pop back in every couple of months and provide another chapter.

 

[itissteve]

Thanks for the update, justdave! I'm looking forward to seeing how the experiment is going and I applaud your willingness to add to the body of knowledge about diabetes treatment, even if some of your medical team doesn't seem very up to date.

 

[justdave]

Well, I think my new team is much more up-to-date than my old one. I had to take the initiative and put in the effort to make that change though, not much in the way of professional help. Here in Canada (and I think in most of the Western world) there is a shortage of doctors. When you factor in that only a few of those specialize in Endocrinology, even fewer in diabetes and some of those few cannot or will not keep up with the technology, the result is that there are not many qualified ones to choose from. I suppose that's a hidden blessing of the pandemic: even people like me (I live on a remote island in the Pacific) can now Zoom to a qualified Dr very far away. That was not an option 2 years ago.

 

[justdave]

Oh... and please don't assign too much altruism to my motives. I'm not trying Looping because I really want to contribute to science, I am doing it because all of my other options are unsatisfactory to me. It only takes a few near-death experiences to motivate me to try something different. Frustration is my motivation.

 

[mbuster]

Good to hear from you justdave. Sounds like you are stepping in the right direction.
Some things do not happen as easily as Newton and Gravity. Probably most discoveries come about as trial and error and try again. There are risks, but hopefully the benefit is greater.
As far as docs, I couldn't agree more. My eye doctor seems to be more knowledgable about diabetes than an endo I once saw.
Looking forward to seeing your progress over time.

 

[itissteve]

I'm not trying Looping because I really want to contribute to science, I am doing it because all of my other options are unsatisfactory to me.

Understood. But even you're doing it for yourself, that you are willing to participate in support forums/pages and apply scientific rigor to doing this, so that we know better what looping can and cannot do, is a boon -- and certainly more of a contribution to the diabetic world than the MDs we've all encountered who've learned nothing new about diabetes since their time in med school decades ago.