Extreme Hypoglycemia

Coping & Emotional Support
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This post might be a little triggering to anyone with fear/anxiety around hypoglycemia (low blood glucose level) so please be kind to yourself and skip to the next post if you need to <3

Yesterday night I had my first ever extreme low. I have been low before, but never below 50mg/dL thanks to my CGM. Yesterday was vision blurry, confusion/couldn’t think, dizzy, extreme sweats, heavy shakes. Finger pricked twice in a row because of the blurry vision and confusion. The meter said: 23mg/dL

My CGM Dexcom was in warm up mode as I had just changed it a hour prior (it takes 2hours to warm up and come online). I can’t remember if I passed out or not, just remember dumping glucose into my mouth, setting a timer (? idk why though), before crawling to the floor in case I fell.

Timer goes off however long later, turned out to be around 20mins, and I stumble through through my appartment to my roommate for help. They were awesome, helping my shaking hands to finger prick again to check where I was at, now 54mg/dL, getting an electrolyte drink and snacks they know I use to treat lows. 45min later I was safely at 101mg/dL and was happy to finally come down off the adrenaline, leaving me exhausted, sweat stained, and scared. I called my dad, who is also a T1D, and getting support from him and hearing his experience with extreme hypoglycemia was really comforting.

Extreme lows are scary to me. Has anyone had a low like that recently? What was it like for you? Did you have someone there with you, or did you treat the low independently? But I think the real question for me is: how do you deal with the lingering fear that comes in the hours and days after?

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@taldrich I tend to go high while waiting for a new CGM sensor (still on G6) to kick in, but have started the practice of setting an alarm on my watch/phone for either 15 or 30 min and doing a finger stick each time until the sensor comes on. Then checking the CGM “wonkiness” for an hour or so (the first 24 hours can be high, low, or reasonably accurate). I figure its better than going high and definitely better than tanking!

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@taldrich , hypoglycemia is a bear. Try alarm laddering to enhance your situational awareness This is written for Tandem CIQ users however any series of alarms can work.

Alarm Laddering:

Alarm Laddering – Discussion & Origin:

The term alarm is used throughout this article for notifications, alerts, and alarms. The concept of CGM (Continuous Glucose Monitor) alarm laddering can be used to keep the person with an insulin pump (PUMPER) informed of deviations or excursions from the desired range of interstitial glucose values measured by a CGM. Situational awareness of glucose levels and the ability to respond timely helps glucose management.

The origin of alarm laddering in the world of diabetes technology has no real origin. There are no articles present when literature (professional journals, etc.) reviews and searches are conducted. The closest similar use of a parallel concept is in the investment world with the laddering of bonds in an investment portfolio. In the investment world, the rungs of the ladder are tied to different bond maturation dates.

Laddering is done by using two or more pieces of software on a smartphone, in addition to and or including a software enabled pump’s own alarm structure. For example, the Tandem X2 with CIQ software alarms at LOW of 80 mg/dL and HIGH of 180 mg/dL. Many pumpers want tighter control.

Next, there are the alarms of the Dexcom G6 CGM which are set at 70 & 200mg/dL. You can change the alarm settings to values you have chosen to achieve you goal of glucose control or awareness.

Third, it is possible to add a third reporting app like SugarMate to the technology suite or software on your phone.

PUTTING IT ALL TOGETHER: Using the customizing features of the various apps, you can set the alarms and their tones to suit your glucose level management style. In countries where Tandem’s t:Connect software is available you can watch what is happening & how CIQ is helping by observing the t:Connect app. In countries where t:Connect is not available, consider the Glooko aka Diasend suite, a web-based platform. Regardless of the platform, the key point is to learn how the CIQ technology receives, calculates, and responds to deviations reported by the Dexcom CGM. Using the available software, it is possible to have a series of notifications tied to the pumper’s glucose level. The comparison to a ladder follows.

After observing the interaction between the CGM and CIQ software, the first lesson is “Don’t fight CIQ”. It is best to leave the CIQ alarms alone and note them in your ladder and consider these suggestions (these are only suggestions and should be individualized to suit you, your clinical picture, and the rules or laws in the jurisdiction where you live):

150mg/dL – 8.3mmol - CIQ High (determine action required)
135mg/dL – 7.45mmol - CGM High (rise confirmed)
120mg/dL – 6.7 mmol - SugarMate High (starting to rise)

80mg/dL – 4.4mmol - CGM Low (be aware of fall)
70mg/dL – 3.9mmol - CIQ Low (stop activity, prep to treat)
60mg/dL – 3.3mmol - SugarMate Low (treatment point watch action in t:Connect)
55mg/dL – 3.0mmol - FDA (USA) mandated PANIC Low

By having these settings, you can take appropriate action and be well informed of your CGM reporting so you can take action to fit your plan:
[1] let CIQ deal with the drift into undesired areas, or
[2] take carefully calculated and proportional action to supplement the CIQ’s own actions dependent on the specific pump settings.
[3] Pick a set of ‘Emergency Action Points’ or EAPs. These are points where safety intersects waiting. My points vary depending on my perception of near future events related to activity and range from 130 to 180mg/dL for HIGH and 59mg/dL LOW. For example, if you are going low, watch what CIQ and CGM are doing in the t:Connect app. You may not need to act as CIQ will throttle back basal insulin allowing the body to bring BG up on its own without intervention. Be careful. Because of the way CIQ cuts back basal, any carbs may cause BG reported by the CGM in the next hour to rocket upwards.

Hope this makes sense and supports your journey thru the battle with glucose.

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Also, having a hypoglycemia protocol worked out between you, your endo, and your management team can help. Here is a sample your endo should have given you to create you own care plan.

Hypoglycemia protocol

DISCUSSION :

The pancreas secretes digestive enzymes into the bowel and hormones–mainly glucagon and insulin – directly into the blood. Conditions associated with altered glucose – insulin interactions are the different types of diabetes.

DEFINITION :

Hypoglycemia is a plasma glucose below 70 mg/dL, with most diabetics not having signs or symptoms until the plasma glucose concentrations drop below 55 mg/dL. Low glucose requiring assistance from another person is severe hypoglycemia. Hypoglycemia has caused serious falls, car crashes, or mimicked intoxication, dementia, drug abuse, or stroke. Simply stated, the person needs rapid acting carbohydrates.

CHARACTERISTICS :

Whole body: very sweaty, very hungry, fatigue, lightheaded, shaky, pale

Cognitive: fainting, tired, sleepy, confusion, or unresponsiveness (unconsciousness)

Other: anxiety, blurred vision, headache, irritability, dizzy, pallor, palpitations, sleepiness, slurred speech, tremor, or unsteadiness

ACTION PLAN : (Review this with trusted people to help BEFORE an EMERGENCY)

If conscious (awake), give juice, cola, glucose tabs, candy.

If unconscious, place in side-lying position, LEFT side down. Nothing by mouth.

Administer glucagon if available & qualified, immediately.

Check glucose immediately after #1 or #3 and every 15 minutes, then.

Monitor glucose (fingerstick & CGM). Check at least one fingerstick for comparison between finger sticks and CGM. Expect ±20mg/dL difference.

If hypoglycemia with unresolved symptoms, or hypoglycemic person who has had a seizure needs EMS (911) regardless of their mental status and therapeutic response.

DISPOSITION:

If all the symptoms of hypoglycemia resolve following treatment, and ALL the below are met, continue with current activities. If ANY are absent, seek medical professional.

Glucose measurement is greater than 80 mg/dL 15 – 30 minutes after treatment.

Normal mental status has returned, with no neurologic signs/symptoms after receiving glucose/glucagon.

The person can promptly obtain and will eat a carbohydrate containing meal.

A reliable adult will be staying with the person.

No significant other symptoms exist, like chest pain, shortness of breath, seizures, or intoxication.

A clear cause of hypoglycemia is identifiable (e.g., missed meal)

NOTE : Many people believe insulin pumps give insulin by a continuous program. Newer “closed loop” insulin pumps (like Tandem X2 CIQ or Omnipod 5) stop insulin when a CGM reports hypoglycemia. Giving 15 grams of carbs and doing a finger stick in 15 minutes (called the 15/15 plan) does not consider the insulin stoppage.

Prior planning of rescue carb dosing is necessary to prevent HYPERGLYCEMIC occurrence.

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Hi @taldrich - thank you for sharing and I’m glad you’re okay.
Like @Tlholz it’s more likely for me to be a little high following a warmup but I have had lows as well. When something bad happens we tend to focus on that, rather than all the times everything went well. Hopefully this was an aberration; but that said, for peace of mind you could do fingersticks during the warmup, or even eat a snack to tide you over while you wait.
As you look back on it you might find something that caused your numbers to fall during that time period - maybe exercise or skipping a meal? This is not to blame you but it can help to try to learn from the experience.

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Theresa @taldrich, you have now recovered and appear to be thinking and writing with a cleared head - I’ve had similar experiences before the advent of CGM and iAIDs. This may have been a “one off” for you and may never again occur, but it should awaken you to the fact that you are too dependent on your devices and you are ignoring the more important “how I’m feeling”.

You didn’t mention what preceded your sensor change, such as meal bolus, activity, etc., so my thought here is very general. If you are using an automation such as BIQ or CIQ you pump settings may need adjusting and you could have taken too much insulin for a preceding meal or you may be guilty of over basalization. I suggest that you look closely at your Tandem reports to see how often the actual basal delivered is below the basal rate you programmed into timed-periods of your Profiles; especially the amount of “red time” on your t-Slim screen where basal is automatically suspended. Tidepool has an awesome daily report that makes it very simple to view these events. A place to begin is looking at your pump history screen and compare the actual average basal delivered [for 7 days, 14 days, 30 days] and compare this value with the calculated daily basal posted at the foot of each Profile.

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Thanks to @987jaj for the information on laddering as well as the last of symptoms of hypoglycemia. For “newbies” who may be reading this I would just like to add that this is not a comprehensive list of symptoms and you may have ones that are not listed. I used to get a funny feeling under my lower lip - similar to numbness but not quite. I read about a woman who was a whiz at math, but couldn’t do simple multiplication when she was low - her family would “quiz” her if they suspected something. And a man I worked with would just doze off unexpectedly.
Make note of your own symptoms as you learn to read your body.

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This part caught my attention:

We’re taught to treat a low, wait 15 minutes, and then check to see if the treatment worked, right? So it sounds to me that, even in your confusion, you still did exactly what you were supposed to. Am I the only one here that thinks that’s amazing? I was in a similar situation when I was in college - completely confused, barely knew where I was or what I supposed to be doing - and what ultimately saved me was my body doing what it needed to do without any real input from my brain/conscious self. Don’t get me wrong, severe hypos are terrifying in hindsight and I’m sorry you went through one recently, but the biologist part of my brain read those two sentences and went “wow!”

I don’t have great advice for coping with the fear other than to talk about it. My episode back in college was not my first severe hypo. I’d had a few blackout events and even a seizure in elementary school. My parents probably should have taken me to a therapist or something, but they didn’t. It was after that event in college (I left my apartment in my pj’s, locked myself out, rang the doorbell until one of my roommates woke up, didn’t tell her what was happening because I didn’t know, then went back to my room and eventually ate a chocolate bar which brought me back to my senses) that I really started to grapple with how scary lows can be, and even then I didn’t really talk about it much until my 30’s. I remember talking with a friend about her anxiety and thinking “Huh. That sounds a little like me.” I think coming here to talk with us was a good move. If you have a therapist or a certified diabetes educator, I’d recommend talking it through with them. Just don’t hold all that fear in forever.

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OK, there’s been a lot of long descriptive replies here. Lemme say it simpler.
I’ve been T1D for over 51 years. Just started using a CGM last year (less than one year using it). The CGM has been a game changer for me in warning me when I am going low. Prior to having a CGM extreme lows were commonplace in my life, and something I accepted as part of the price of being Type 1. Honestly I am surprised I continue to live considering some of the serious low sugar events I have experienced.
But to your final question about lingering fear, that is something I have never personally experienced. I have had so many serious low BG events in my life, that I simply accepted that it is part of being diabetic and have taken measures to protect myself so that I can recover from such events.
I live alone so there is no one in my household who can assist me. If I get low, I need to fix it. My problem times were always mealtime, and overnight while sleeping. In my kitchen I have rolls of glucose tabs in a couple cabinets at floor level, and also keep a bottle of regular soda on it’s side on the bottom shelf of my fridge. If I pass out in the kitchen, or get low and cannot stand, I have those emergency fuels where I can get them. Think of what you would be able to reach if you were on the floor or on your hands and knees. Same thing in the bedroom: I have glucose tabs in my nightstand, and a warm bottle of regular pop on the bottom of the nightstand - the shelf where people typically place books.
Spend time regularly thinking about how to respond to a serious low and where your emergency foods/drinks are. It’s like training for anything else. If you hammer it into your head, when you get into trouble you’d be surprised that even if your mind is complete fog how repetitive training can prepare you so that there will be that inner voice that will still tell you where to get your emergency supplies no matter what state you are in.
It is good to have others around who can help you, but what if you are alone one day and have this happen? Repetitive training of your mind can save your life in this situation.

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If you get a serious low while asleep, you may awaken in a state of convulsions. At that point the liver is going to unload any glycogen stores it has, and after a few cycles of convulsing, you will likely stabilize enough that you can get some food or sweet beverage into your system

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@Tlholz , @bsteingard , @taldrich @Dennis , @wadawabbit , @JTR19

True, the protocol is to fit a one page notebook. The content was harvested from a literature review of ARC, AAOS, USDOT-EMS, & other curricula. The DEFINITION is the integral part.

Remember the old “15 grams wait 15 minutes” in the world of CGMs and AIDs will result in a skyrocketing glucose sometimes reaching 300 to 400 mg/dL. 15-15 is 1990s therapy and has no place here.

Jeff, gluconeogenisis and other deep physiological processes are way beyond the BASICs of the two sets of ideas.

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Theresa,

Over the last 49 years, I’ve had more extreme hypos than anyone should have. And yes, they are truly frightening.

The closest I came to not surviving was when my flat mate found me unconscious and called the ambulance. I spent 1 week in intensive care and suffered permanent brain damage that affected my personality, according to those close to me, as well as my short term memory. It changed my life forever.

Sadly that wasn’t the only extreme hypo. On the night Princess Diana died, I also came close. I was in a hotel room in Bharain, on my own. I could hear this bell ringing over and over. That was the receptionist trying to call me to tell me the bus was leaving for the airport. Meanwhile I was eating sweets, slowly at first then faster and faster as they slowly took affect. I made it to the airport for my flight, but only because it had been delayed.

The most frightening episode I had was when I was doing a 5 day solo hiking trip. On the morning of the third day it was purely life saving desperation that woke me up from being unconscious. All I can remember is that all of the other people who had been in the bush camp ground had packed and left. It was like I was living in a nightmare. I stumbled around with no idea what I was doing, but I had one thought in my head, and that was to tear open the sachets of glucose jell and squeeze them into my mouth.

It’s a miracle that I’m still here to type this note.

Unfortunately, the few people that I have told about these episodes are not able to comprehend what I am describing. They don’t believe me OR are incapable of comprehending the horrendous nature of what I am trying to describe.

All I can do is tell anybody reading this that we are vulnerable to this dangerous situation. To at least understand that this can happen might help someone to avoid also falling into a similar situation.

Alex

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Hi Alex. Thank you so much for sharing - it’s great to have a place line this where everyone understands what you’re going through. I’m impressed at the adventurous lifestyle you lead. Do you use a CGM?

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I was diagnosed in the 1990’s and the 15-15 rule has kept me alive so far. You’re right that it needs to be adjusted to the individual and their tech (which is why I didn’t specify “treat with 15 g”), but I wouldn’t say it has no place anymore, especially if you’re not using a CGM and AID. I don’t have a pump, for example, so I can’t address a low by decreasing my basal rate or rely on some AI to do it for me. Even if that rule wasn’t what saved the OP - let’s say it was the pancreas and liver that did it - I know that in my case the 15-15 rule often helps me keep from panicking and eating 60 g right off the bat. I think it’s an easy rule of thumb to remember, especially when you’re not thinking so clearly, and it’s a good starting point for those who are newly diagnosed. I still use it all the time at work. If I feel like my blood sugar’s dropping and/or I get a low alarm from my CGM, I eat a 15g packet of skittles or a 15g granola bar, wait about 15 minutes, see how I feel, and then eat another if I think it’s necessary. I do recheck my CGM as well, but since it lags about 30 min behind, I don’t take the number on the screen at face value.

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I agree - but I want to add that it is very little effort to take a glucose tab with exactly 0 IOB and figure out how much it raises your blood sugar (for example, 1 tab raises my BS by 20 mg/dl) then when Im low I take 1, 2 or 3 tabs to get me to where I want to be and there’s no waiting…Unless of course its one of those lows where I take 3 tabs and then empty the refrigerator, but we’re not talking about that kind of low! =)

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1990s theory? This is wat was suggested for me in 1950 in the days when a simple blood sugar test took 2 -3 days in a hospital, yes, it has been outdated since the 1980s when digital BG meters came in to existence.

Although it is certainly important to have supplies on hand and know how to treat hypoglycemia, it is much more important to know how to avoid hypoglycemia in the first place. I am aware, being clinically brittle, that a hypo can come upon us for no apparent reasons - or by accidentally over-dosing insulin, so be prepared.

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I have been a type 1 for over 50 years. Below 50 isnt common but you will learn not to fear it. My frustration is sometimes after treating the long wait for it to start back up and I have found that buying pure dextrose power and putting that in some water is magic. You feel it and can see it so fast it’s amazing. Don’t worry, it’s part of who we are. Just make sure if it becomes a trend that you either make modifications yourself or consult with your provider.

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Hello wadawabbit.

Yes, I have had a CGM for only the last 6 or 7 months. Before that I was on finger pricks and pens only.

Ignoring my idiot teenage years - I was diagnosed at 17 years of age - I have always adopted the attitude that T1 wouldn’t dictate my life. Yes of course it has had a major impact, such as way too many wake ups in hospital, but I haven’t let it stop me doing stuff.

Having said that, I know that I am lucky to be alive. The near-death hypo that I had when I was about 23 should have killed me, and if it wasn’t for a stroke of luck and a very good friend who found me, I would certainly have died. As it was, as mentioned in my reply above, I suffered life long consequences.

Probably the most “edgy” episode I’ve had was when I woke up in intensive care in a hospital in Riyadh in Saudi Arabia. There’s a long story behind that, but needless to say I had a very bad hypo and fortunately had the right people around me to help.

To be honest, the episode I talk about above with the 5 day solo hiking trip scared me so bad that I succumbed to reality and pulled back my quest for adventure. That episode really scared the socks off me. It was horrible.

An interesting anecdote that came out of that episode is that my boss had given me an EPIRB to take with me. When I returned to work, he asked me how the hiking trip had gone. I gave him the executive summary of what had happened, then he asked me a very interesting question. Keep in mind that he comes from a military background.

He asked me if I would have been able to use the EPIRB. I looked at him deeply and said that he knew more about the subject than he was letting on. There was no reaction from him as he waited for my answer, so I told him that no, I would not have been able to use it. With a hypo, if you are able to activate an EPIRB then it means that you don’t need to. But if you do need to, you won’t be able to activate it.

I found his question to be interesting and revealing.

Alex

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It’s up to you - and each of us - to stemming or own level of comfort and decide what is best, so I’m not trying to pressure you. But if you are interested in pursuing extreme sports again gets an article about Type1 athletes who climb mountains

and another about Type1 professional bikers

Hopefully having a CGM, being confident in it, and learning how to use it to adjust your treatment, will give you the confidence to engage in the activities you lovved, if you want to. If not of course that’s okay too.

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Jeff, I’ve just read your advice. That is very good advice and you have described it very well.

When the level gets so low that you don’t even know what 2 and 2 is, let alone add them up, you need to have the most basic survival steps baked into your brain.

Well said.

Alex