Hypoglycemic Unawareness? How do you identify it and how do you deal with it?

I was one of those who said…“I am so fortunate, I still FEEL my low blood sugars.” Well, I decided to buy (read, out of pocket) a box of sensors to make sure what was happening, especially at night. Of course, wearing the sensor made me test constantly…so, I have gotten a pretty good sense of what my blood sugars are doing round the clock. Little did I know…I am dropping into the 50’s WITHOUT any indication that my blood sugar is low. I woke up this a.m. at 49mg/dl (per meter) and felt totally normal. I proceed to check w/ both of my meters…yes, I am low! I was scared to death…I think I have been sleeping through these! I was under the false impression that I still had dawn phenomenon! I do not…but, my pump settings were set for increase before rising. My dawn seems to be after I get up…through breakfast. I had this low AFTER reducing my 3 a.m. to breakfast basal rates! The diluted point I wanted to make, was that I wonder how many of us experience these types of lows, that never get noticed? How did you find out that you had hypoglycemic unawareness (HU)? What do you do to identify when you are having one? When did your doctor identify that you had it?

My doc realized how bad my hypo unawareness was when I started testing 10-12 times a day, including waking up every AM at 3 or 4 to test. I knew I had a problem when I started testing 6 times a day which is why I started testing more. My doc wanted me on a CGMS right away so I got on the DexCom and now I know what times of the day and the month I am more prone to lows. I also am figuring out what foods set me up for lows later so I can improve my eating. I still don’t feel my lows at all but the Dex catches them if I don’t.

I am aware of lows during the day but I sleep through them. I must have slept through thousands of them. I remember the many nights when I woke up drenched in sweat. Eventually I figured out that my bg was too high in the morning because I used too much insulin at night, not too little. These days my DexCom wakes me up when I am low at night. This is annoying because I know that nothing bad will happen if I sleep through it. There is no way to switch off the 55 alarm. The upside of treating the low is that my liver does not go into glucose overdrive which would give me an early morning high. I am planning to switch from shots to pump to improve my bg control.

You know what is terrible…I tested that much too, and never caught these! With the CGMS trial I found myself checking almost hourly:) and that is when I caught them. Still learning how to use the MM CGMS, but hopeful it will alert me to them. I have heard great things about the Dex and hope to try it soon. I currently have such limited insurance coverage, that it is all out of pocket. I am sure if I had better coverage I would have been started much earlier. Again…thanks for sharing your experiences Suzanne:)

Using the MM system…I have not always noticed the alarm in the middle of the night. What is the DexCom like? Have you ever slept through it? I also made the mistake of setting the alarm threshold (mg/dl) too high. Fist night it went off constantly! I would think a loud alarm for night may be a good option so, we can set the alarm threshold at a reasonable number to catch dropping blood sugars vs. just “excellent” blood sugars…hoping Dex or Nav are addressing this. Thanks Helmut, for sharing your experiences.

A Type 1 for 64 years I am acutely aware of my hypoglycemia unawareness, and have had far too many visits to my home by the ambulance and trips to the ER. The Dexcom Seven Plus has been an enormous help to me. It wakes me up if I dip too low, and the software that comes with it lets me analyze exactly what I need to do to avoid the overnight lows. The error rate of +/- 20 percent of today’s glucometers is way to high for anyone trying to keep a tight control.

The 7+ vibrates first and most of the time I wake up from that. If I don’t press a button to acknowledge the alarm the 7+ will beep after 5 minutes. There is no way that I don’t wake up from this beep. This is what the 7+ user’s guide has to say:

The Receiver also has an automatic Low Glucose ALARM set at 55 mg/dL. This ALARM is a feature in addition to your personal glucose alerts. You cannot change or turn off this ALARM or its re-Alert settings.
• When your SEVEN PLUS glucose reading is at or below 55mg/dL the Receiver will notify you with 4 low beeps and vibration in this order:

  • 1st 5-minute ALARM: “Vibrate”
  • 2nd 5-minute ALARM: “Vibrate” “Beep” “Beep” “Beep” “Beep”
  • 3rd 5-minute ALARM: “Vibrate” “Beep” “Beep” “Beep” “Beep” (louder)
    • The Receiver will vibrate and beep every 5 minutes after the 3rd ALARM if your readings are still at or below 55 mg/dL until you press the C button.

64 years:) I hope to follow in your steps. Sounds like I need to try the Dex!

wow! that would work:) Thanks for the specifics…always appreciate your help:)

Just to add some stats on the Minimed sensor (from their Sensor Features User Guide):

With Low Glucose Alert set at 70mg/dl (3.8 mmol/L), 49% (100/205) of low glucose events were detected by the sensor. When the alert was set at 90 mg/dl, 82% of low glucose events could be caught.
43% of alarms are considered false alerts = blood sugar is actually greater than 85mg/dl
To get a 90% True Alert Rate, MM sensor users must set the low alert setting at 100 mg/dl

I run BGs below 100 at night…really need to know when it is actively dropping and when it is below 60 mg/dl. This would really help me and prevent hypoglycemic complications.

A loud night alarm, improved sensor accuracy, and sensing of the difference between stable blood sugars and dropping blood sugars…say it and they will build it…and then I will find the money to buy it:) because I need it!

Patricia, now that I have a device that is able to detect lows and highs I have very few lows and highs. It is a catch-22. I expect that the same will happen to you. You will be able to fine tune your basal rates and avoid lows at night. The 7+ is a game changer.

Good point:)

My ISIGs are typically less than 15 and often less than 10. Sometimes it is w/in about 10mg/dl and tracks well…other times it is way off and not showing trend at all! I am grateful to have found my lows and noted that I no longer have DP…but, wish it was a little more accurate:) My plan is to try the Dex next. Take care.

Thanks, Helmut:) I think you are right…I wish I had tried it earlier. Even w/ the inaccuracies of the MM…it helps in a way that finger sticks and basal testing can never approximate. Did you try the other 2 CGMS…what experiences did you have w/ accuracy, if you did? I have read people get longer use out of the DEX and much greater accuracy in readings. Anything else I should know? Thanks.

The 7+ is my first CGM. I made my decision based on posts that I read on CWD. I placed a high value on the opinion of people who had switched from one CGM brand to another. At the time everybody seemed to switch from MM or Navigator to 7+. When I compared the CGM data sheets the 7+ also came out ahead. For me it was a clear-cut decision. Looking back this might have been an acute case of “confirmation bias”. Since you already know that the MM CGMS does not work well for you, the choices left are Navigator and 7+. I don’t think you can go wrong with either. Remember: When a choice is hard it means that the alternatives are about equal. Otherwise the choice would be easy. My favorite is still the 7+. The 7+ sensors last longer, the transmitter is smaller, the start-up time is 2 hours versus 10 hours, reported skin irritations are way less. Of course, I am not immune to the endowment effect. Don’t take my word for it. DexCom offers a 30 day money back guarantee and trials are offered through some endos. There is no downside to taking a 7+ for a ride. Let me know how it works out for you.

really? I had no idea, maybe this is my problem since I am on high blood pressure meds. I must look into this more, thanks for the info Dave!

Most definitely…they include atenolol, metoprolol, etc. See a list here. Thanks for mentioning this Dave:)

What is the Dex? It sound like I desparetly need to have it. I sometimes have the urge to test when I get home from diving. O.K. why am I not feeling it when I’m a 49 and driving. This has happened more than once. I experience unawarence often and hope when I get on the pump I’ll have less lows. Been a Type 1 for 33 years and unfortunately I have limited insurance.

What I’ve learned over the years is that my symptoms when I’m low are not always the same. Waking up in the middle of the night sweating is the classic one that’s easily recognized. I too have had the experience of testing and getting a super low reading, like 39, and being surprised at how alert I felt – with no sweating.

I’ve noticed some more subtle symptoms over the last few years. Sometimes I’ll wake up at night and I’ll have darker spots in my vision, kind of like the spots you see after someone takes a flash photo of you.

I’ve also noticed that sometimes I have a peculiar taste in my mouth. This symptom doesn’t happen every time but I’ve been aware of it.

When I’m awake, the real tip-off for me is the difficulty to carry on appropriate conversation. It’s difficult to form sentences. If someone is giving me instructions, like driving directions, when they get to the third item on the list, I’ve forgotten the first two. I also find myself getting overly irritable at others for insufficient reason.

The early morning lows are the hardest to detect. When I do wake up I find that I’m usually in the low 50s. I find a strong urge to continue sleeping past my normal wake-up time. When I get up and test, I discover the low and then find that my blood sugar control is ruined for several hours. I’m certain that I’ve experienced hundreds of these episodes over the years. Following the low, when I eat the least little bit of food, like one small piece of toast, it sends my blood sugar over 200. Corrective insulin doses at this point seem to have no effect in bringing my BG down.

I started using the Dexcom CGM last month and have been awakened by both low and high BG alarms. This allows me to take timely action. In the past I’ve gone through periods when I’ve set a 3:00 a.m. alarm to do a finger-stick. I’m happy to let the CGM take over that function. If my BG is in range overnight then it lets me sleep uninterrupted.

Before I had the Dexcom unit I could catch most daytime lows. Once my BG drops to a certain level however, like the mid 30s, then I lose awareness that I’m low.

For me, the night-time lows have always been the hardest to catch. The CGM appears to solve that problem.

Good luck with your efforts to regain control of your overnight BGs.

I have a Dexcom too and love it. I would sometimes have severe lows in the middle of the night. I wouldn’t wake up until I had been low for some time, the bed would be drenched in sweat and my body temperature would drop. Then i would have to change bedding and shower to warm back up. I would feel like crap the whole next day, like I’d been hit by a train. Anyway, Dex has been very helpful in avoiding that situation. I’m please with how accurate it is.