CGM woes

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Last week was a very frustrating week. I started to type a blog entry when I was mad, but my husband talked some sense into me and told me it would probably be better to cool off first. I tweeted a lot about my frustrations but in case you don’t follow me on Twitter, I’ll summarize what happened.

Being 24 weeks pregnant now, my stomach is getting stretched. I have slowly moved outward on my stomach to my love handles for my infusion set, which has done well. My new Enlite continuous glucose monitor (CGM) sensor on the other hand has not had as good of luck.

Last week was my 4th time to put the sensor in since starting on the Enlite. Prior to last week, I had put my sensor in my stomach (although more on the outer area of my stomach). The first 24 hours of my sensor were AWFUL. Once I got over the initial 24 hours, the sensor worked a lot better. However, last week I put my sensor more in my love handle. I put it in on Monday night and I knew the first 24 hours would be crap.  I ignored the complete inaccuracy Monday night into Tuesday.

Inaccurate first 3 hours

Inaccurate first 3 hours

Since I am 24 weeks pregnant now, I am sleeping on my side, which also includes sleeping on my sensor side. Overnight, I was lying on my sensor and it did hurt some. I woke up and my sensor was still way off but the initial 24 hours hadn’t passed yet so I didn’t worry too much. Well, around lunchtime on Tuesday I got a Cal Error twice followed by a Change Sensor error. I have never gotten that before, even with 2 years on the Sof-sensors. I tried to “override” the error by starting new sensor but I still got the same errors again. I finally called Medtronic and after being on the phone with them for about 45 minutes, they told me to take the sensor off, put a new one in and they would send me a new sensor.

Change sensor error

Change sensor error

I was already frustrated with the fact that my sensor had errored out because I was 24 hours without a working sensor and now I would have to go another 24 hours with another inaccurate sensor. Also when I called Medtronic, they talked me through everything that could possibly be wrong. I have had a sensor for over 2 years, I read a lot of diabetes blogs and Facebook groups and I’ve googled issues so I knew everything that I needed to do right. My CDE also sent me a document on how to have more accurate sensor readings so I am very well informed on how to calibrate sensors. I didn’t appreciate wasting 45 minutes on the phone with Medtronic when the end result was what I knew, it was a bad sensor. I think the main issue was that I slept on it the night before and I guess somehow it bent the cannula.

Supposedly bent cannula

Supposedly bent cannula

Tuesday, after talking with Medtronic, I put in a new sensor. I put this sensor on my stomach but still close to my love handle. I guess you could say it was more the line between the two areas. Well, the same thing happened on Wednesday! I got the same issues! Cal Error followed by Change Sensor. I was so frustrated! Because I have had a CGM for over two years, I’ve become incredibly reliable on it. I have never taken more than a 12 hour break from it. Wednesday, was going on 48 hours without a sensor and then knowing another 24 hours of inaccuracy would follow. I was a mess (and the pregnancy hormones didn’t help). My Sof-sensors might not have been the most reliable thing but they were better than nothing.  They were usually off by 30-40 points, so they were crap at identifying lows but they were good to know the general area I was in. I would take that over 64 hours of nothing!

So inaccurate

So inaccurate

I had to call Medtronic again and because I didn’t want to spend another 45 minutes on the phone with them, I tried to speed things up by saying that I already heard everything yesterday and I was having the same issues, etc etc. However, the customer service lady didn’t want to believe me so I had to waste another 45 minutes on the phone with her. She didn’t listen to what I was trying to tell her and instead had to go through all the steps with me all over again. This made me even more livid!

After taking a few hours to calm down, I enlisted my husband’s help. We decided that the stomach/love handles weren’t an option for me. I posted on Twitter and Facebook for help and googled other places to put a sensor. One resonating fact was that most Medtronic Enlite users only use their stomachs while most Dexcom users have the freedom to put their sensors anywhere. I finally found one person that didn’t put their sensor on their stomach, which helped me to feel better about my decision to try somewhere else.

I debated with my arm but thought I might also hit that sleeping and thought about my thigh but worried it might be too muscular or get hit by my pants. So I opted for my upper butt. My husband had to help me and the first time he put the sensor in, the inserter pulled the whole thing out. We tried again with the same sensor and again the same thing happened. I was worried that maybe my inserter had gone bad (I’m still worried about that) but I didn’t want to call Medtronic again and waste another 45 minutes so I just threw that sensor away (along with the $ that went with it). My husband tried again and I guess third times the charm because it actually stayed in. First 24 hours were absolute crap again but I didn’t get any errors this time and so far it has gone well (I’m on day 6 now and I’m terrified of having to put another new one in and worry about the inserter pulling it out again).

This experience was definitely a taxing one. I learned a lot of new things last week. Apparently the new Enlite sensor is ridiculously sensitive. A lot of people gave me tips last week such as don’t put too much tape on the sensor, don’t press to hard when inserting it, don’t press to hard on it once it’s in, etc. Also, Medtronic is very adamant in telling you not to calibrate more than 3 times per day. I used to calibrate about 10 times per day with my Sof-sensor and didn’t really run into any troubles but I am NOT calibrating more than 3 times per day anymore. I won’t have them waste another 10 minutes on the phone lecturing me on how much to calibrate.   Also, the sensor was only tested and FDA approved on the stomach area so Medtronic is crap at helping you if you want to put it anywhere else. Apparently, Dexcom is the same but they seem much more willing to help with other placement areas (or at least people using Dexcom love using other areas without regret). The frustrating thing (not like there weren’t more) is that Medtronic’s website says that the Enlite sensor is perfect for pregnancy but then it isn’t approved for anywhere but your stomach so not really helpful at all.

CGM for pregnancy but not approved for anywhere but stomach

CGM for pregnancy but not approved for anywhere but stomach

I still have about 10 sensors left to use, but I am meeting with my endocrinologist next week and I’m going to ask her about switching to Dexcom. I’ve been a loyal Medtronic user for 18 years but my experience with the Enlite sensor has been awful. Between the complete inaccuracy the first 24 hours, to the wasted time on the phone with support, I am ready for a sensor that actually works. I have heard that Dexcom has the same 24 hour inaccuracy but you can use the Dexcom for 10-14 days or more so 1 out of 14 days is a heck of a lot better than 1 out of 6 days.

More inaccuracies

More inaccuracies


7 thoughts on “CGM woes

  1. I used my Dexcom CGM with my Medtronic pump through my entire pregnancy. I had already made the move to using my upper-to-back-thigh area for the Dexcom, then used my hips/love handles/upper bum for the infusion set. I cover the whole CGM sensor with Opsite flexifix tape, and even on my upper thigh, with pulling pants up and over it all the time, I’ve never ripped it out.
    Be aware: Dexcoms will also give you wonky readings (like then ???) if you lay on them too hard overnight. Had that happen a lot back when I was a stomach sleeper and had the Dex sensor on my stomach. But since moving to my thighs, it’s never been an issue, even when I slept on the sensor side (guess there’s not as much weight/pressure on the legs?) When my Medtronic pump warranty came up, they tried their darnedest to get me to use their CGM with my Medtronic Revel. I tried it for a couple weeks, and then said, “Nope, I’m sticking with the Dexcom.” More accurate readings, AND I can keep in the sensor site for 2+ weeks. (I’m on week 3 with my current one, and it’s dead-on within 5 points of my fingerstick meter 95% of the time, so I’m keeping that sucker in until it goes wonky.)

  2. LOVE my Dexcom. Suffered through the old Medtronic CGM, so I UNDERSTAND your pain. Can only imagine how much more frustrating it is to go through while pregnant. Best wishes in getting a Dexcom of your own quickly!

  3. I find it incredibly disappointing that people are having most of the same problems with the Enlite sensor that I had with Sofsensors. I switched to Dexcom almost 4 years ago and it was life-changing. And of course the G4 is miles better than the 7+ was. Even when the numbers aren’t spot-on (they usually are), they are always in the ballpark and the trends are right. The first day is often off, but not always. I average 2.5 weeks with each sensor. Although I miss the “system” of Medtronic and the additional information available (on the receiver Dexcom gives you only the current number and graphs for previous numbers), Dexcom is so easy to use and no one talks about ISIG and blames you for calibrating wrong. My best sites are the backs of my upper arms.

    So sorry you have to deal with this, Kelley.

  4. If you routinely carry a purse (or diaper bag!), wearing a Dexcom and using Medtronic won’t be that big of a difference – except for the accuracy!! When you are home, it can reach about 50 feet in range so you don’t have to carry it on you all the time.

    Good luck!

  5. Yeah, to piggyback on what Sara said, I think one of the things people overlook with the Medtronic CGM is the distance factor. It won’t let you go too far (I think only six or eight inches?) before it senses you’re out of range. I know that’s not your problem here. But I think that’s also why people don’t usually put them anywhere other than their midsection.

    Sorry you’ve had some frustrating days. Having used both, I like the Dexcom.

  6. Ok, so I know this post is from well over a year ago, but I have a question about laying on your CGM! I wear mine on my belly, to the side of my belly button. I’m getting a massage this afternoon and I’m worried that laying on my tummy will cause inaccurate readings. Anyone have any problems with laying on your Dexcom? I’ll be on it for about an hour and a half.

    • Hi Christina! So I haven’t used my stomach in probably 2 years or so (been using my upper butt) but I don’t remember having inaccurate readings when I would lay on my stomach and I used to only sleep on my stomach. But that was so long ago, don’t quote me on that. I hope you enjoy your massage!

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