Went off of my CGM

after almost 2 years of being on my dexcom sensor, i finally felt it was time to let it go. i have written many times before about the difficulty i was having finding a sweet spot to put my sensor in, b/c i am so thin. i tried and tried and ended up in sheer frustration. also, i found myself checking and checking and checking my receiver. non-stop, compulsively. i would follow my direction arrows and became very anxious when they were showing straight up or down, fast or slow, no matter what. i was physically and emotionally attached to it.

well, i had to have some surgery and the surgeon would let me keep my pump on, but he would not let me wear my sensor. (i was taking medication that included Tylenol.) i went w/out it for the first week post-op. as frightened as i was to be w/out it, i found this tremendous sense of relief. i simply went back to relying on my old test strips and meter and was able to relax. i keep thorough logs, writing down everything and learning from mistakes and successes. i did, however, learn many things from using the CGM, which i have been able to apply to eating many different types of foods (for example, fatty food like steak, grilled cheese sandwiches). i am much happier and feel free from the insane attachment i experienced from the CGM.

i don’t know if my experience may help others. i just thought i would put mine out there. i don’t feel like i failed, but feel like i succeeded by my willingness to try out a new technology for managing my diabetes.

good luck to all of you. wishing you all the very best; and, thank you all for your endless support that you gave me while i was on the sensor.

Daisy Mae

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While I’m sorry to hear CGM did not work well for you, it’s oddly comfortingto hear more and more people talk about the issues they have with Dexcom, especially the newest version, because it seemed like there were so many people having trouble with the MM Enlite and switching to Dex at great cost and inconvenience. I have also tried both and have the same issues with supposedly being too thin. I’m actually just a healthy mid-range weight, but I had the same kinking/bending problem with the 90-degree insertion sets years ago and had to change to the 30-degree angle, which was a perfect solution. But the sensors are only 90-degree for now, hopefully there will be more options down the road. I too have given more than the old college try for months now, and while I don’t know if I’ve decided to hang it up yet, I am sure getting close.

As far as I can see when I remove a Dexcom sensor, it goes in at an angle not straight in.

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Hey Daisy Mae - totally get it and glad you are doing what is best for you. Giving it a try and sticking with it for as long as you did is very commendable. More importantly though, you should be proud that you had the courage to realize it’s not for you and go back to what works and doesn’t create anxiety for you.

Thanks for sharing as I’m sure others are in the same boat!!!

Best of luck.

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thanks mikep. that’s very thoughtful and encouraging. i spent so much of my time feeling like a failure b/c i couldn’t get the darn sensor to help me manage my D. i wasn’t for a long while able to just let it go and realize that i gave it my best shot.

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I think in your case, it is better to get off CGM and by now you know how your sugars level based on the foods. you can always re calibrate if you feel the need to check

I am 6 feet 3 inches tall. The saddle on my bike is 39 comfy inches off the ground. If you happened to be 5 feet 10 inches tall, you would have difficulty riding it, but you wouldn’t be a failure. You’d be matched up with the wrong bike.

Thank you so much for sharing! I have selfish reasons: I too am very thin, and I keep thinking I’d like to give a CGM a trial. Knowing that another thin person had issues changes my expectations. I might still try one, but thanks to you, I’ll have my eyes a bit more open.

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I appreciate this post. Your experience was very relevant for me. I am waiting for the freestyle libre to become available to me because I am also very thin. I test hourly once in a while to get a pseudo-continuous feed of glucose readings and even though this not at par with a CGM, it still gives me useful information for avoiding extreme BG swings.

Thanks for your interest in this topic. i didn’t know if it would help anyone. i always feel like a bummer when i complain about being too thin and not being able to gain weight. basically, in this world, it seems that all people are doing is trying to lose weight, especially T2 Ds ( not to throw all T2’s into an o

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@Daisy_May, Hi Daisy_Mae, I’d like to say thank you for helping me become more person-centered as I deliver diabetes self-management education. Please know my take away point from your post is “the person with diabetes is the expert.”

Thank you.

i appreciate your response. i felt so excited when i first went on the Dex. i thought, that just like my pump, i would get use to it in no time, even though it seemed overwhelming and scary. my best friend had been on it for about 8 years w/out a problem. it never dawned on me that she was about 50 pounds heaver than i am and that that would make a difference. i was told that as long as you could pinch up some skin, you could get that sensor on properly. well, i was able to pinch up some skin, but apparently not enough to accommodate the sensor. but i continued to try. some times it worked; i could get about 4 - 5 days out of a sensor. i spent so much of my time calling the Dex helpline having them replace my dud sensors, i might as well have had a BAT Phone with only 1 # on it that went directly to DEXCOM Tech Support :wink: but i gave it a whirl. i learned a lot about how different foods worked differently on my D body than they did on other D’s bodies. i learned i need insulin for proteins, certain veggies, dual boluses for ANY starches, coffee, etc etc etc. it was worth the experience. i haven’t thrown out my dex, but it will be a long while before i find a new use for it. i don’t feel so defeated as i did originally. and, thank god for test strips and meters that Medicare covers!!! :smile: thanks everyone.

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Hi Daisy. Like you, I am thin and find it hard enough to find a comfortable spot for my pump site, never mind a second site. I tried using a CGM, but got frustrated as well and now rely on testing my blood sugars about 8 times a day. I have found another alternative that I am anxiously awaiting to arrive - a diabetic alert dog! These dogs are trained to alert you before you blood sugar gets too low, or before it gets too high. I don’t feel my highs or lows any more, and have gone down way too low without knowing it. Diabetic Alert Dogs of America is currently training a dog for me now that I should get in another 3 or 4 months - I can’t wait!!!

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Good luck!!! Those dogs are amazing.

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Daisy. I’m not a thin individual but my experience with CGM was similar with the line of sight the transmitter requires to the pump site often causing me to have to recharge and relocate the sensor. I think we are pioneers for future usable CGM tech. This generation of CGM requires such intense maintenance on the users part that the real gains have to be measured against one’s quality of life while using CGM. Multiple site management may work in a hospital setting but I have other, important things to monitor that were being compromised - sleep, sex, family, work. Thanks for your story - here’s hoping a realistic tech is in our future.

thanks for your response, Bowie. i too have more important things to do than to constantly worry about the trial and error placement of my cgm. i am very lucky w/ regards to my pump, b/c they have infusion sets that are “child” sized. the introducer needle and the cannula are very short and easy to manage. you’d think that the cgm companies would consider this seriously. not everyone has the body fat required for this system (even though dexcom claims that their sensors are easily used by children.) . and then theres dealing w/ the rotation site btw pumps and sensors, UGH.

Hi @Daisy_Mae

I’m new to the site. I also get anxiety as a result from my Dexcom, its difficult not to check the numbers frequently and the arrows can sometimes cause you to worry about when the down/up trend will stop, so you keep checking it obsessively. I go on “vacations” from the Dexcom CGM for a week or two at a time. It definitely feels nice to not have it stuck to you once in a while, it does add bulk. I do find it helpful for exercise however so I won’t go off of it permanently. It also saves my forearms from looking like a pincushion because when I do go CGM free I check my blood sugar almost hourly.

Good luck