Diabetes Self-Management Blog

I’m considering getting a continuous glucose monitor (CGM). Or maybe I should say that, for the past few days, I’ve been thinking about CGMs. I never really gave them much thought over the past 10 months, what with my Type 1 diabetes diagnosis and the acclimation to my new diabetes lifestyle. There’s only so much one man can do.

I mean, there was this new relationship to almost everything I put into my body; then the initial adjustment to injecting insulin; and then an adjustment to infusing insulin with an insulin pump; and of course a long list of the dozens if not hundreds of other little things that go along with living the Type 1 life.

So for those of you who remember your first year with diabetes, I’m sure you’ll cut me some slack for neglecting CGMs.

This past week, though, I’ve had a few problems with test strips. Nothing major, mind you, but it was enough to cause me anxiety. And anxiety breeds anxiety, so as rational as I tried to be about these “stick, bleed, test, read” hiccups, I continued to think about how this seemingly insignificant 8- to 10-times-a-day task really is a major part of my life. Do my test strips define me? Is my monitoring kit my security blanket? Is it only when I’m well-stocked with quarter-inch wide, inch-long pieces of plastic that I can go about my day without positing a worst-case scenario?

I hope not.

However, on Sunday evening, the blood glucose monitor that attaches to my insulin pump stopped sending signals, and after troubleshooting to no avail, I felt pretty stressed. Yeah, I have a stand-alone monitor as a backup, but nonetheless, something wasn’t working right. So I went to bed and, on Monday, called the Cozmo people (Smiths Medical). An incredibly friendly representative walked me through a cleaning procedure. It worked!

Two days later, I got into the office (a 20-minute drive from home) and realized I’d forgotten to refill my test-strip supply. With only two strips and a long day ahead, including a haircut after work, I worried about how I’d make it through the day, especially because I’ve had a tendency these past few weeks to flirt with lower blood glucose levels (I’ve really increased my exercising, and I’ve been adjusting basal rates accordingly—although I never get the perfect match the first time).

I also know that I can’t rely solely on how I feel to give me an accurate indication of my blood glucose. But is it in me to not know, to keep ingesting carbohydrates and risk going high? That was my best option (because I wasn’t about to go to the pharmacy across the street and pay $60 for a box of strips). I am pretty dedicated to keeping a low HbA1c (it was 5.7% at my December checkup). That’s a good thing. And I’m sure I’ve built up grace points so that maybe I could slack a little…you know, suck it up and say, “Okay, go a little high today. It’ll be okay.”

Instead, I thought, “How nice it would be to be able to pull out a little monitor out that would give me a comprehensive indication of where my blood glucose has been over the past few hours, days, weeks, months…”

My initial Web research into the CGM piqued my interest. Readers of my blog may recall that I wrote about my insulin pump acquisition process over a series of entries that filled up quite a few weeks. Most of those entries were written months after I’d gone through that experience. Now, however, with the knowledge that CGMs are pretty good and only getting better, and with my—dare I say this?—love affair with diabetes technology and the thought of having yet more diabetes accoutrement to line my diabetes supply shelf, I figured I’d blog about it and bring you along as I consider the question “To CGM or not to CGM?”

I hear both the good and the not so good about continuous monitoring. Mostly what I hear is the somewhat skeptical “the technology’s still pretty new (and expensive); you still have to check your blood glucose with finger pricks a few times a day; they’re not as accurate as finger sticks; most CGMs don’t communicate in a closed-loop system with insulin pumps.” And, of course, the kicker is that most insurance companies won’t cover CGMs, at least not yet.

So there you go. Test-strip dilemmas beget continuous glucose monitor exploration.

I don’t plan to write about CGMs every week. And until insurance pays for my continuous glucose monitor and supplies, there’s little chance I’ll get one. I know that Jan, another blogger here on The Diabetes Self-Management Blog, has a CGM. I’ve read her entries. Who else out there uses one? If you don’t have a CGM, aren’t you just a little curious? If you do have one, I’d love to hear more about your experience with it, from actually wearing it to your experience with insurance, with supplies, with…well, just about whatever you’d like to say.

Those of you who follow this blog and don’t want to comment, that’s fine—we’ll let you lurk. But really, feel free to chime in. You can help me as much as my laying bare my diabetes soul in some small way helps (or at the very least entertains) you.

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Comments
  1. If you normally use a mail order company such as Medco or Express Scripts, they have provisions for emergencies such as this. You can call them and ask them to call in a one month refill to your local pharmacy. It’s a lot cheaper than the full retail cost of one box.

    Posted by dorisjdickson |
  2. I’ve been using a CGM for about nine months, and overall, excepting my husband, it’s the best thing that’s ever happened to me. However, I have to tell you, it was a much more difficult adjustment for me than the pump. After that initial “honeymoon” period (you know, the two to four-week period when your new technology does everything right no matter what?), I had a lot of trouble with the CGM.

    First problem? That needle is very, very long and I had a lot of big bleeders, as in, blood ROLLING down my belly before I could reach a tissue. A little blood is okay, but that much ruins the sensor. I played around with it, and after a couple of weepy calls to customer service I figured out that my love handles are the best spot to use.

    Posted by Angela |
  3. Next problem: the sensor is supposed to be ready five minutes after insertion, and it worked that way at first - but it started taking longer and longer, and in the meantime I was going nuts trying to figure out what I was doing wrong, or was it broken, or what? I never did figure out why this worked for me at first and then stopped - my workaround now is to put the sensor in at night and turn it on in the morning. Bonus: this approach means that my system skips the calibration that is supposed to be mandatory after two hours on the first day of the sensor.

    After that, I had a few boxes of sensors that gave me “lost sensor” alarms ALL the TIME. Then I got a box that consistently gave me a “bad sensor” alarm on the second day (a real trauma when you’re paying $350 a box and expecting six days per sensor!!).

    Now that Minimed has caught up on the sensor backorder, it seems that the sensor quality has improved significantly. I haven’t had any problems since last August.

    Posted by Angela |
  4. A little back story: before the CGM I often went days without checking my blood sugar. I just didn’t want to know. The most frustrating part was that I knew the numbers I obtained by making myself bleed were absolutely, fundamentally useless. One instant in time, plus or minus ten percent. Seriously? I’m an accountant, and the cost/benefit just wasn’t good enough for me. Because of this, I would sometimes be high for days and not even know it.

    Now for the good parts. The CGM has been very accurate for me. I have to be careful about picking the right times to calibrate, but I’ve often had BG readings plus/minus three to five points compared to my CGM. Often. The alarms alert me to a high as soon as it happens, and although it sometimes takes many hours to bring it down, I start working on it right away. My HbA1C went from 6.8 to 5.9 in less than six months.

    Posted by Angela |
  5. For two years I had woken up every single morning around 240. Within ten days on the CGM I corrected a serious 12AM-2AM BG spike and a serious case of the dawn phenomenon, and now I wake up every day between 95 and 135. Although there are nights when low alarms, high alarms, low reservoir alarms, etc., ad nauseum, wake me up every hour, most nights I sleep. Real sleep. The kind you don’t get with your blood sugar in the stratosphere.

    My husband loves that when I’m cranky he can ask me to check my blood sugar and I don’t spiral further downward because I have to go find my meter, prick myself, and start thinking of the strain of being chronically ill. I press a button.

    Posted by Angela |
  6. Now that the sensors are working better, I have a routine for changing the site (I am not ashamed to say it still involves a healthy dose of ice!), and I know what to do about absolutely everything that can go wrong, the CGM is a dream. I told you the rough stuff because you should know that it can be hard. But now that I’m on the other side, it was all worth it to me.

    Incidentally, I’ve been under 3 insurance plans since I started the CGM. BCBS of MA would not cover it, even after a doctor’s letter and proof of results (which were pretty impressive once I created graphs using Minimed’s Carelink software). MVP did cover it, much to my surprise and relief. BCBS of VT does not cover it, and although I am still in the appeals process, I don’t have much hope.

    Best of luck with your decision. I would go for it if I were you. In fact, I did go for it - and I’m quite happy!

    Posted by Angela |
  7. My 8 year old daughter has been Type 1 since age 4, we added the CGM to her pump therapy We were checking her BS 10-12 times a day and her A1C’s were still hovering at the high end of her max of 8.5. Enter the GCM, we have been on it just over a month, my daughter hates the large needle but we use numbing cream. I love being able to look at her meter to get an “idea” of where her BS is. You should never treat a high or low without a finger stick confirmation. I love the low BS alarm, set so we know when she is starting to get close to her minimum. I use the software to upload her readings every couple of weeks so we can fine tune her basal rates.My husband has been Type 1 for 30+ years. I see what damage this disease has done to his system over the years, the GCM will help us do the absolute best we can to make sure she stays healthy enough to benefit from a cure or at the very least live a life free of the many devastating side effects. Suzanne

    Posted by Suzanne |
  8. Hi Eric! I love my CGM! After 50 years as a T1 I feel in absolute control; well, as much as is possible!:-))

    The first two weeks using my CGM were a bit frustrating,

    * Meter is for decisions
    * CMG is for showing trends

    I have been able to reduce amount of insulin and carbs per meal in less than 30 days. My over-all health has improved along with my mental health.

    Yes, there are still glitches within each of the current CGMs available, but - we have a very good computer on top of our shoulders and with THAT human computer plus the technical CGM - I have a SAFETY NET I never had before!

    A CGM is the very best Safety Net we can have!

    If you want more info about the technical aspects of my brand of CGM, contact me!

    Joan:-))
    DexCom 7 CGM
    Type I since 1957

    Posted by Joan |
  9. I used a CGM for about six months as part of a study through my local diabetes research center. I love most things about it. It took some getting used to, having it attached to my arm, but the freedom it afforded me was tremendous. I loved being able to see my BGs during my daily routine, and this gave me knowledge and understanding of the effects of diet and activities on my BG. When the CGM beeped me awake at 2am one morning because my BG was 45, I also learned first hand how my BGs often plunge overnight, and was able to correct my nighttime insulin, eliminating a dangerous situation.

    Alas, the test eventually ended. I would love to have one permanently and would consider paying for it myself, even if I had to cash some savings. Priorities: big screen TV or CGM? I’ll take the CGM, not much on TV these days anyhow.

    Posted by dsdsaint |
  10. To those who’ve responded thus far: thanks so much for the insight. I’ve spoken to a representative for one of the CGM companies and I may indeed give them a shot sometime in the near future. I’m sure I’ll write more about that in an upcoming entry, but I wanted to acknowledge people’s posts over the past few weeks. I appreciate it.

    Eric

    Posted by Eric |
  11. I am new to CGM. I inserted my first on Dec. 20, 2007. It is the Minimed Sensor for use with my pump. Like many of the other writers, I too have had my share of problems: the initial 5 minutes is in reality 20-30 minutes and too many high alarms. I love the low alarm at night as it has woke me several times. My latest problem: after the insertion of the sensor and attachment of the transmitter, there is a 2 hour wait period for the first BG calibration. Within about 20 minutes I get a “Lost Sensor” alarm. I set it to find the sensor and 20 minutes later I get another, then another, then another. Each time the pump resets the 2 hour calibration period and what was supposed to be 2 hours turns into 4-5 hours. One poster seems to suggest that this may be to fault of the sensors. I don’t know but I will ask about it with Minimed support.

    I do know that I will be sticking with my decision to use CGM and I will work past the problems. Good luck, Eric, on your decision.

    Posted by Gary |
  12. I was using a cgm. I stopped because I starting feeling like the diabetes was controlling me. I was constantly watching the graph. I finally stopped using it because I was awaken every night by alarms. Not alarms for low or high blood sugar, but rather the pump and the sensor lost communication. I always sleep thru the night. But, ever since I began to use the cgm I was constantly dealing with alarms in the middle of the night. At this time I don’t know if I will start back any time soon.

    Posted by cpa |
  13. I LOVE my CGM system from MiniMed! There have been a few frustrating moments, but overall I have nothing but praise for the system. As far as the bleeding mentioned by one poster, I’ve found that choosing the proper location and inserting at the proper angle keeps me from having any bleeding at all. As far as the nighttime alarms, I first feel angry about the interruption of my sleep but soon get over it when I realize that it has alerted me to a high or low situation that I truly needed to remedy.

    Posted by nmsplash |
  14. I must admit, however, that I too have had several “bad sensor” messages since I opened my most recent box of sensors. When I called the 24-hour helpline, I was told to simply clear the alarm and NOT restart, just leave it alone and continue to clear alarms but not restart. They said that even up to three “bad sensor” alerts wouldn’t necessarily mean that I should change out the sensor. I thought to myself, yeah, right, you just don’t want to replace a whole box of sensors. Well, I followed the advice and my current sensor is working just fine now. I’ve found that restarting truly isn’t necessary or even advisable for these particular alarms. Still, I can’t help but think that this batch isn’t quite as good as my previous boxes which gave few or no such alerts.

    Posted by nmsplash |
  15. Anyway, I love the additional info the system gives, and the high and low (ESPECIALLY the low) alarms have been great in helping me finally to even out my numbers after my unusual Type 1 diagnosis this past July at age 44. One last thing that’s kind of amusing: I’ve noticed that a friend/coworker makes a point of stopping whatever she’s doing whenever she notices that I’m check my glucose level so she can see what my numbers are and whether I’m in range! I think it’s actually become sort of a guessing game or lottery of sorts for my coworkers to see how my sugar levels are running each day. :-)

    Posted by nmsplash |
  16. One last thing… My insurance covered my CGM system at 85% under the durable medical supplies clause (same as my pump) after my endocrinologist mailed in a letter along with my VERY detailed records of all my ridiculously high and low roller coaster readings I experienced during my first couple of months after beginning my treatment. I figure this tool will SAVE my insurance company money over the long run due to my better control.

    Posted by nmsplash |
  17. For those of you who want your insurance to cover the cost of CGM…

    1. It seems that Medco mail order pharmacy now has the sensors listed as an approved device (their negotiated rate with Minimed is $146.40… less than half of what the poor uninsured would pay)

    2. For those with relatively good A1Cs, don’t forget to have your doctor stress to your insurance company the potentially life saving benefits that come from avoiding nighttime hypoglycemia. This worked in my case.

    Posted by schleima |
  18. I’ve struggled with high a1C levels my entire life. Upon using a CGM, I managed to drop two full points in a month. These things work- I’ve got the data to prove it. :)

    Posted by Erin |
  19. i have run out of strips and can’t get any until friday i am getting nervous about where my levels are right now how can i tell?

    Posted by brenda |
  20. i have had a CGM for 3 years now, type one for 51 years. i love the CGM and know my very brittle diabetic control is smoother now. my biggest worry now is insurance coverage. a year ago i paid out about 300/year for the CGM needs. this year its more but i am able to do it. i am retired and i’m sure you have heard the gray haired complain that they are not able to bring in more money to pay for increased medical, gas and electric etc etc. when i reach 65 (2 1/2 years) i will no longer have coverage since my plan (MVP) mimics medicare and medicare in NYS will not pay for CGMs. its very hard to find such a solution and then have it removed. bonnie

    Posted by bonnie bullivant |

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