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Enjoy the Silence. Or Not So Much.

[Disclosure about my relationship with Dexcom]

During the first trimester of this pregnancy, lows were intense and weirdly symptomatic; a nice contrast from the hypoglycemia unawareness that’s crept in over the last five or six years.  (I ended up stashing a jar of jellybeans in the dining room hutch, only to have to move it into direct line of sight in the kitchen in efforts to keep up with the persistent low blood sugars of those first few weeks.)  As this pregnancy has moved forward, the lows have become slightly more predictable and the hypo-unawareness has returned, making the Dexcom BEEPS! and BLARGHS! more necessary.

Until that week when I noticed, “Hey, the alarms have been quieter.”  And then I realized, “Hey, the alarms aren’t working.”  Because overnight, my G4 receiver had been rendered mute.

When I received the Dexcom recall notice several months ago, it was very early February, and I was still using the G5 transmitter.  At the time, the only people who knew I was pregnant were my family and my medical team, but I knew, and I was stalking blood sugars with vigor (and a side of panic).  My endocrinologist, not a fan of the data output from the G5 application, asked if I would consider using the G4 for the remainder of my pregnancy.  Wanting her to check the “compliant” box on my chart (there’s a first time for everything), I switched back to the G4 the following week and have been on it since.

And for months, my G4 receiver was fine.  Alarmed all the damn time, vibrating and buzzing from my bedside table or my purse and alerting me to the changing needs of my baby-hosting body.  And then, all of a sudden, the speaker went full garbage, not working at all.  Only a vibration came from the receiver, making my phone* the best laid plan for alerting me audibly.

It wasn’t until I woke up one morning and saw the empty raisin box and the discarded juice box that I realized the night before wasn’t very comfortable.  And that I didn’t wake up because of alarms, but instead because of aggressive baby kicks.  I couldn’t ride out the rest of this pregnancy without replacing the receiver, because I was NOT waking up even with the phone alarms.  I needed high octane, receiver-in-a-glass-with-some-coins sort of jolting.  I needed to connect the alarms to Siah, encouraging her to walk across my face when I was low.  Or similar.

I needed the receiver to actually WORK PROPERLY.

So I went to the website – Dexcom has a special page set up for this particular issue.  There’s also a special hotline number to call: (844) 607-8398.  After a quick exchange with the woman on the phone, she asked me to confirm that my alarms weren’t working by doing the following:

  • press the center button on your receiver to access the Main Menu
  • scroll down to Profiles
  • select Profiles
  • scroll down to Try It
  • select Try It
  • scroll down to 55 Fixed Low
  • select 55 Fixed Low
  • verify that you receive vibrations first (vibratory portion of alarm), followed by beeps (audible portion of alarm).

And once we confirmed the alarm absence, a new receiver was scheduled to be shipped out.  Should be arriving in the next few days, in time for me to finish up this pregnancy as a G4 user (to make my doctor happy) and hopefully by staying in my threshold lines (to make my fetus happy).

If your G4 receiver suddenly craps out, sound-wise, call the hotline number and have a new one sent out.  Alarms that won’t alarm are alarming.

(* I follow myself on the Dexcom Follow app, along with one other person.  Yes, redundant.  In response to the dead receiver speaker, I changed the alarm settings on my phone so that I’d be alerted for highs and lows.  This worked, in theory, except when my phone was on silent or in the other room.)

9 Comments Post a comment
  1. I have had similar problems, although I am a guy. My G4 receiver worked well. The G5 system has not worked as well for me.

    I had an experience two days ago where the G5 said I was 55 and going down, while my actual blood sugar from a finger stick test was 125! Very different result and actions there.

    Last week, my Dexcom alarmed as the number was heading down fairly rapidly. When it reached 44 and I was still feeling OK (no symptoms), I decided to check with my meter. The meter said 137! I calibrated the Dexcom. Two minutes later, it alarmed and said I was 265, or, over 220 points higher than the last reading. When I checked with the meter again, I was 162! The Dexcom never said to replace the bad sensor, despite these wildly inaccurate readings. The G5 was 100 points off on either side of the true reading within the space of just 2 minutes. My sensor this week is a new one, and we had the reading yesterday that was 75 points off!

    I called Dexcom customer service to complain about my G5 last week. The fellow who answered was a person with T1D himself. He said the sensors are exactly the same as the G4, but the communications medium between the transmitter and the receiver is new, and there were a few software improvements. I let him know the problems I have been experiencing. He claimed that my results were unusual.

    I told him about my gastroparesis problem as well. The highest number that Dexcom allows for a low blood sugar alert is 100. I have told them about this problem every time I have spoken to them since 2004, when I started on the Dexcom through my wife’s work at the UCSF Diabetes Center. Dexcom needs to allow the patient to set this number for the low alarm higher.

    If you have gastroparesis, like me, due to nerve disease (thanks to long-term diabetes), your stomach does not process food quickly enough, causing heartburn, among other effects. I need to know ASAP when my blood sugar is approaching lower numbers, so I can ingest sweets soon enough to prevent a severe low. The Medtronic device used to allow a “low blood sugar” alarm to be set at any number. I tried their CGM for a while, with the setting at 140, then went back to the Dexcom because it was more accurate. Lorraine and I used to call the Medtronic device a “random number generator,” because it rarely was close to the number from the meter.

    Once, when I was teaching at UCSD, my Dexom “low” alarm sounded. I asked my students to read their books while I began to consume apple juice, etc., to deal with the low. I tested on my meter. Instead of being at just below 100, since the alarm had just sounded, I was actually 69! The next thing I knew, the paramedics were standing over me, as I had not had enough time to absorb the apple juice (thanks to my gastroparesis+). My students were scared and shocked. I have told the story of this incident to anyone who would listen at Dexcom for years, all to no avail.

    One Dexcom person at an ADA event said, “It costs millions of dollars to get the FDA to approve a software change like that.” Obviously, Dexcom has had several software updates over the years, but they never chose to include the change to the low alarm flexibility for people like me.

    Another time, the Dexcom person said, “Gastroparesis is so rare, we would never change the software for something that unusual.” I found out at a meeting of the Joslin medalists that the condition is not that rare amoung those who have experienced any kind of neuropathy or retinopathy. So, I guess Dexcom does not want to serve those of us with gatroparesis.

    Another excuse that was given by a Dexcom person was that the therapeutic value given by their doctors was 100 and would work for most people. I told that person that I was NOT most people. Their device is a great tool, but allowing people like me to set my own alarm limits would be much enhanced if I could have more options with the low alarm, even just allowing me to go to 120 would be great. So far, no such luck.

    The customer service rep that I spoke with last week said he would share my story again with the people who sometimes ask him for suggestions. He thought that allowing the option of a low alarm setting of 120 or 140 sounded reasonable (to him).

    07/21/16; 2:09 am
  2. My sweet older kitty isn’t the sharpest tool in the shed, but he definitely senses something isn’t right when I go low at night. He’ll make his best effort to wake me up by plopping his 15 lbs. down on my chest to cut off my air supply. In his mind stealing my breath = alert cat status. I can’t help but give him a high five (paw?) because he’s never been wrong about a low.

    Sadly I’ve given up on Dex for now – just too high maintenance in its current iteration. Maybe the next-gen sensors will do it for me. The Tylenol hurdle is also too prohibitive as I have migraines often enough to mess Dex up. Ugh.

    07/21/16; 8:52 am
  3. Leah M #

    I have had similar problems with the G5. I use both my phone and the standard receiver–one upstairs and one down. I leave my phone on vibrate as I also wear an apple watch and the lack of ringing has improved my quality of life. However, having the phone on vibrate acts to silence the Dexcom alerts, including the alerts on the receiver. I need to call Dexcom, but I don’t think there’s anything I can do, except shut my phone off at night. If I leave the ringer on, it will beep incessantly with a low or high alert until I go downstairs and say “ok i hear you”, which is not, obviously, what I want to do at 3AM.

    In short, don’t get the G5. Yet.

    07/21/16; 11:11 am
  4. Andy #

    Been using dexcom for four years not a complaint about it. I find it accurate enough to bolus off of it. I recalibrate it every 12 hours. Sensors go about two weeks if you go for three the data isn’t nearly as accurate. I hope the new dexcom isn’t bad as you folks say it is because Medtronic was horrible as far as accuracy goes.

    07/21/16; 12:07 pm
    • I love my Dexcom, and the data it provides. I’ve been on some version of the Dexcom CGM since 2006 and find the results to be really accurate, and dependable. Before I developed an allergy to the adhesive, I could wear my sensors for upwards of 15 days. (It was awesome, but now I get a rash.) No complaints about data, etc. from me. 🙂

      07/21/16; 12:49 pm
      • Nikki L. #

        Isn’t the Dexcom sensor replaced weekly? Just curious about what you and Andy mean by 2 weeks/15 days. I have also had a great experience with the G5. The readings are almost always accurate and I feel comfortable bolusing off of it. 🙂

        07/21/16; 3:00 pm
        • andy #

          I think the official dexcom recommendation is to replace after seven days. They are expensive to use. I use them for two weeks or more as long as they are still accurate. Typically they tend to deliver reliable data for two weeks and I’ve had them go three weeks before they gave unreliable data. There likely is a greater risk of infection but I haven’t experienced any problems.

          07/22/16; 11:53 am
          • Nikki L. #

            Good to know- yes, they are very pricey. It’s a great technology but we spend enough on meds/supplies- right? Have to save where you can. Thanks for the reply.

            07/22/16; 2:18 pm
        • The FDA approved recommendation is 7 days of wear, and I go by that based purely on the reaction I have to the adhesive. If my skin could withstand the same sensor for more than seven days, I’d gladly do a restart. The tech is brilliant, but very expensive.

          07/24/16; 9:57 pm

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