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Eric Lagergren, Newly Diagnosed with Type 1 Diabetes
Mar 06, 2008

Continuous Glucose Monitoring and Me

Eric Lagergren

About a month ago, I told you that I was thinking about continuous glucose monitors (CGMs) and that I’d take you along on my exploration of these little devices and share my experience. Then, last week, I said that on Monday I’d start wearing one for a week.

Monday came. I was prepped and fitted with a CGM. And then I lived with it…

…for only two days.

Okay, a little more than two days. About 56 hours.

I took my CGM off last night and put it back in its little trial kit that I'll soon return to the DexCom rep.

Why did I take it off? If, like me, you've read blog entries and articles about CGMs on the Web and in some magazines, you might think that I was getting inaccurate readings from the receiver. I wasn't. In fact, given that the CGM lags 5 to 7 minutes behind my actual blood glucose level (because it reads the interstitial fluid in my abdomen rather than fingertip blood), I found that it coincided pretty closely with the blood glucose levels I was getting from the meter on my insulin pump. It was nice to confirm that I have tight control on my blood glucose.

Or you might think that I abandoned the CGM because it was painful to insert the CGM's sensor. I've read those stories from other users about the CGM's long needles, and those large insertion devices do look a bit intimidating. Yes, I had some trepidation at first. But the DexCom Seven system's insertion device didn't hurt at all, and it was actually less noticeable upon insertion than the infusion set for my insulin pump.

Or maybe it was because I'm daunted by paying for a CGM out of pocket and then going through the hassle of trying to appeal to get my insurance company to cover the device and sensors. Nah. I've had enough run-ins with my insurance provider that if I really wanted a CGM, I'd gladly go through the process of buying and then appealing for reimbursement.

But you see, the reasons that I took off the CGM...well, I'm still working on how to articulate exactly why I don't want one. My decision to rip off the sensor (and, by the way, ouch!) while watching a movie last night wasn't knee-jerk. For now, here's the short version:

I'm only one year into living with Type 1 diabetes. If you've followed my blog, you know that I pay an incredible amount of attention to the condition, and that I don't mind scrutinizing my self-management. (See my entry "Diabetes In My Hierarchy of Needs" for more on this topic.) My endocrinologist and my family physician tell me that I'm taking care of myself extraordinarily well. I mean, they have these blood tests they can do, not to mention their years of medical training, so I like to consult them for confirmation!

Therefore, I don't see a CGM as a tool I need in my diabetes repertoire right now. It's yet one more diabetes thing to worry about, and I found it an added burden when added to my insulin pump, glucose meter, medicine, and so on. I do know from experience with other diabetes-related gadgets that it's possible—and eventually it does happen—that I'd get used to having a CGM around. But at what point do I say "No, I don't need another sensor on my body or one more cell-phone sized gizmo on my belt"?

At this point, I guess.

I don't want to get used to one more diabetes thing. Not now. Not when I'm maintaining good self-management. It's awesome that the CGM provides me with readings every five minutes and a graph of my blood glucose levels. But there's the catch. This is also a problem for me. The CGM was really with me all of the time. Too much with me, in fact, because I was drawn to checking the readout, drawn to thinking about my blood glucose even more than I already do, more than I need to.

Really, do I need that?

I decided that I didn't, and I decided that I don't need four more days of using a CGM to make a decision.

Don't get me wrong. The technology's great, and I see many advantages for people who are worried about their glucose levels and are doing everything they can to maintain tighter control but can't seem to get a handle on it. Nighttime lows? The CGM would be great for that.

I'm also excited to see where CGM technology goes in the next few years. I'm pretty sure I'll revisit them somewhere down the road.

POST A COMMENT        E-MAIL A FRIEND

Dear Eric. Yes I know the feeling I have not got around to buying an insulin pump because at this stage I am not sure that it would improve things that much. And having it taped to your body 24 hours per day. But you wonder that if with a CGM and a very well tought out computer control algorith and an insulin pump you could in essence have an automatic Blood Glucose feedback control system. Would that make us near normal?

Posted by: CalgaryDiabetic | Mar 07, 2008 07:55 PM

Calgary...

Quite a few of us are wondering what a closed-loop system would be like. I wonder, would we still have to bolus for meals, or could it pick up the change in bg values that quickly and adjust with some kind of faster-acting insulin? I don't know. I haven't read enough about a real closed-loop system and what's possible and what's only a pipe dream. I'm sure there are folks out there who follow what the future of diabetes care can look like. I need one of those Popular Science-type articles that shows what Type 1 care could look like in five years, ten years, twenty, and so on...

And actually, I do feel pretty normal (relatively speaking). And after reading The Surgeons: Life and Death in a Top Heart Center by Charles Morris this weekend, I feel quite fortunate that diabetes sans complications is my medical burden at the moment. The book's a really great read, by the way.

Thanks for the comment!

Eric

Posted by: Eric L | Mar 10, 2008 09:34 AM

Eric,

I started my CGM, a Medtronic Sensor (version 2), on December 23, 2007 and I have experienced all the things you mention: extra large needle, large differences in glucose values, constant awareness of something else hanging off my body, and the constant need to look at the readings. On top of that, about 2/3 of the insertions result in fair to excessive bleeding. I have gone through all of these thing for a lot longer than a 6 day trial period. Yet, I have hung in there and now I get nervous about not having one for any length of time. If you ever decide to give it another go, give it some time, maybe 2 weeks. You just might like the added tool in your arsenal for control.

Thanks for your blogs!
Gary

Posted by: Gary Taylor | Mar 12, 2008 06:24 PM

Thanks Eric for sharing your experience. I've been on the pump for 1 year, type 1 for 13 years. I'm still on the fence on whether I want another device attached to me. My endochronologist is not convince it's worth it. He says "more parts to buy and manage". It would be great to be alerted if I'm heading for a high or low so that I could head it off but only if insurance will cover it. For now I'll stick with common sense and tight monitoring and keep me eye on the technology.

Posted by: DenverDiabetic | Mar 12, 2008 08:45 PM

Eric, I'm confused. If you already have a blood monitoring meter on your pump, why even consider an additional device for the same thing?

Posted by: Peter Mead | Mar 13, 2008 12:54 AM

Peter,

It's not the same thing. I mean, yeah, essentially they're both blood glucose monitors, but the CGM's emphasis is on the "Continual," and these CGMs show you what your blood glucose is constantly... either testing through the sensor once every minute or two or every five minutes (as mine did). The monitor that interfaces with my insulin pump is a simple blood glucose monitor that I need to use a test strip for... often no more than 8 times a day. Compared with the hundreds of tests and charting that a CGM can provide showing you trends, not to mention the alarms if it sees that you're glucose is going higher or lower, and there are obvious benefits to using both the CGM and the "traditional" glucose meter.

Maybe some other people can put it better, but that's my one-minute response.

Best,
Eric

Posted by: Eric | Mar 13, 2008 10:15 AM

Eric,

I have been a dibetic for twenty-eight years. I've been on an insulin pump eleven years. I've been useing a CGM system for one year. I was never able to control my glucose until I purchase an insulin pump. Since, I have maintained an A1C of between six and seven percent which is the level that my Endocrinologist suggest. I am a very brittle dibetic and have suffered many episodes of hypoglycemia trying to maintain tight control. I decided to try the Medtronic CGM system since I was already useing a Paradigm pump with strong support from my doctor. After one year of continuous use, I would have to say that I would feel partly undressed without it. It has been tremendously helpful with alarms for low and highs. The accuracy is not perfect but it keeps me informed as to the stability of my glucose or if it is going up or down. I know that continuous glucose monitoring is not for everbody but I believe it is very helpful for very brittle diabetics.

Thanks,
Lamar

Posted by: Lamar | Mar 14, 2008 11:55 PM

Eric,

You mention that one could purchase the CGM and then appeal one's insurance company for reimbursement.

Could you tell me more about the ins and outs of that? I know that my insurance company has a process, but what would you say would be the best evidentiary support to appeal a decision?

Thanks!

Posted by: TonyJ | Mar 15, 2008 01:25 AM

Tony,

I really can't tell you more about the ins and outs of appealing to the
insurance company, because I haven't done it and have only heard from the
CGM rep that they have had clients do it and (so they told me) had them do
it mostly effectively (they offered no statistical proof and part of me was
a bit dubious about the "promise it all now, find out it doesn't work later"
sales technique).

I would suggest contacting the sales rep in your area for the CGM you're
interested in and asking them more about the process as they know it. That's
really all I can point you toward.

If anyone else has firsthand experience, do share. We'd all love to know!

Eric

Posted by: Eric L | Mar 17, 2008 03:10 PM

I wore the newly released Abbott Freestyle Navigator in a trial beginning Dec. 2006. I was amazed by the thing and I also felt it was a curse at times. It can be a really be a pain in the neck to constantly know your blood sugars; kind of burdensome at times.

I decided to buy the Minimed CGM to use with my pump and I like it, but don't wear it constantly. Sometimes I like to not constantly "know."

I'm sure there are lots of folks interested in the Navigator since it was just approved and I blogged about it a lot during the trial. For user-end info feel free to visit me at www.diabetesselfcare.blogspot.com.

I totally understand where you were sending the unti back. I decided not to get one for my daughter.

Thanks for this post. Nice perspective.

Posted by: Wendy | Mar 18, 2008 08:57 PM

I, too, tried a CGMS for a little while and then gave it up. I've been a diabetic for over 18 years now, and as soon as the MiniMed Paradigm CGMS became available, I bought one, hoping that it would help me get a handle on my control (which has been difficult to do for a while now). Unfortunately, while the extra device didn't bother me (I already wear a pump, after all), I couldn't get the system to work properly -- there were constant calibration errors, and I had difficulty finding a place to insert the sensors without excessive bleeding. And all of this was compounded by Minimed constantly changing their instructions. So I gave up after about three weeks. I do want to have the knowledge (as long as I can adjust the alarms reasonably easily), but so far, for me, the technology isn't at a place where it works for me.

Posted by: BDan | Mar 24, 2008 05:26 AM

Eric, I have the cgm that works with the Paradigm insulin pump. I love it have been a diabetic for 27 years. Very brittle but do better with the pump and cgm system than I did with shots, got my first pump in 2002 and was more than ready for the cgm when it came out I have no indications that I am going low or high. I worked for almost 9 months before the insurance approved it for me. Went through the apeal process and made it.People need to be vigilant and they can get it approved. Mary B

Posted by: Mary B | May 09, 2008 12:22 AM

Thank you for your informative messages on diabetes. The change in my sugar level bothers me. How do I balance the drop and rise of sugar level within 12 hours for 81 in the evening, say around 8.00 p.m and to 290 8.30 in the morning?

I record my sugal level each time I take meal.

Thank you in advance.

Harriet

Posted by: oyerah | May 14, 2008 04:27 PM

Hi oyerah,

You may want to read our article
"Blood Glucose Monitoring: What Do the Numbers Tell You?" The article offers several possible explanations for high blood glucose levels in the morning and what you can do about them.

You may also want to read about the dawn phenomenon and the Somogyi effect, which can also cause high morning glucose levels.

Posted by: Tara Dairman, Web Editor | May 14, 2008 04:50 PM

if i didn't have a real medical need for it, i probably wouldn't be going through the prior authorization process right now
but in december 2007 i developed very unpredictable gastroparesis and i can't bolus until i know if my stomach is accepting my food or not without risking a low.

whether i want to constantly be looking at my readings, i really don't want anymore unknown nighttime hypo events or to get in the car for the hour drive to work knowing that i am going to have to stick my finger while in the highway

it's gotten a little easier since i got my pump a few days ago [6/5/08] since i am no longer giving myself 8-10 shots a day, but i am still sticking my finger every waking hour and in the middle of the night

now if i can just convince my insurance company that the test strips i am using cost about the same as a monthly supply of sensors.......

Posted by: catastrophegirl | Jun 08, 2008 03:40 AM

I recently obtained the freestyle navigator and have just started using it, about a week now. When I needed my doctor to sign off on the prescription, his comment to me was "why do you want to live out of a box". My response was simple, I want to live.
The navigator requires doing blood testing to calibrate and check itself, and mine fails more than half the time. Last night the navigator told me my bs was 130, when upon testing it was actually 190. This has been happening every time and I am about to send it back. The answer from the company was that you can't calibrate it when your sugar levels are fluctuating- DUH, that's the nature of my diabetes and many like myself-our levels are extremely volatile.
My conclusion is that these devices are in their infancy and are primitive and inaccurate. I probably will look into this in a year or so when they have the bugs worked out. When they close the loop and have the monitor communicate with the pump it can be called something else-
an artificial pancreas.

Posted by: Sid57x | Jun 23, 2008 10:37 AM

I have been diagnosed with diabetes 43 years ago at age 34. Ihave been on the pump for 8 years & the realtime sensor for 1 1/2 years. I was quite discouraged with the system & quit for about 6 months, but after consultations and quite intense instructios, plus learning why & how it works, I find it is a valuable tool. Medtronic could save a lot of trouble by a better training program. Incidentally my insurance talked at length with Medtronics and advised me to go ahead and get it. Accuracy is not perfect, but watching the trends is priceless.

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