Struggling with Hypo-Unawareness – and confused as to why I would suffer from it

Type 1 and LADA
1

Hello All,

I was diagnosed with type 1 diabetes about 2 years ago, I am doing mostly ok, but have noticed an increased hypoglycemia unawareness lately. The reason this seems weird to me is that as far as I learned, this happens usually to people who had diabetes for a long time and have experienced a lot of hypoglycemic episodes, therefore the body has become so "used" to low numbers, that it fails to send the usual warning symptoms that go along with a low, e.g. shaking, sweating, not thinking clearly, extreme hunger and so on.

Since I was diagnosed, I have been on a relatively low carb diet and my numbers have been reasonably well controlled (A1c always between 5 and 6) although with my pancreas lately not much helping out anymore and me eating a few more carbs I have had more fluctuation with post prandial numbers. (160 - 180 not so rare) and also I have seen more mild lows (usually I catch them through "intuitive" testing at around 60mg/dl)

But yesterday morning I exercised harder than usual, and 1,5 hours after lunch (which I injected 6 units apidra for) I checked, thinking the exercise might have influenced my BG more than anticipated, and found myself with a reading of 48mg/dl.
This is the lowest I have ever been, and I felt no symptoms at all. Only after I saw that number I began shaking, but I believe that that was more anxiety than anything else. I treated and was fine 20 mins later, but it really scared me, because I thought I would surely have to feel some discomfort with that kind of BG?!
I also wondered how I would have done if I wasnt at home but out somewhere – and had maybe not make the decision to test, how far would I have been from fainting??
Can anyone tell me at what number this could or would usually occur?
And could I really have an unawareness that would not let me feel any symptoms before being knocked out?

I always thought my hypo awareness wasnt the best, usually only in my low 60s would I feel somehow "off", maybe a little weak or brain-foggy, but I have never experienced anything like what happened yesterday.
If well controlled, shouldn't I feel symptoms coming on if the BG even drops below 70 mg/dl?

Has anyone have any ideas as to why I could be experiencing this unawareness, and what I could do to fix it?
The thought really worries me not to be able to catch my lows in time, always having to rely on my metre and not being able to trust my body's signals.
So I d be very thankful for any ideas, tips and feedback.
Thank you all :)

2

The way to regain hypo awareness is to religiously avoid any BGs below 70 mg/dl for two to three weeks or so. You may have been spending more extended periods in the 60's without realizing it. When this happens, then an excursion into the high 50's doesn't induce low symptoms.

For me, I can usually maintain consciousness for some time but my brain is not fully capable to recognize my problem and treat appropriately. My goal is to never enter this "point of no return" condition. To top it off, I will usually feel a certain mental stimulation that fools me into thinking everything is OK.

To regain hypo awareness I would recommend testing a lot. Maybe 20 times per day. Be very aware of where your BG is and which way it's trending. A CGM would help a lot. Stay above 70 and your adrenaline and other counter-regulatory hormones will make themselves felt when you go low.

Is there any pattern to your lows? Do they tend to occur when you're sleeping or late afternoon? Or maybe after exercise? You probably have a pattern that could guide you when to key on testing. Testing is your friend. Knowledge is power. You have to make it a priority to monitor your BGs. I know it's hard when working and living makes so many demands on your time but this is one fact of life that you can't skip! Good luck.

3

I have another thought. Are you taking more insulin now than you were a few years ago? I only ask because I slowly ramped up my 40 unit/day usage to 80 units over several years. I habitually over-dosed and then ate to the insulin. This produced extended hypos on a regular basis especially when combined with exercise. I was on the glucose roller coaster more often than not.

I hated high BGs so I always added insulin when in doubt. That led to weight gain and insulin resistance. My change in eating habits have now reduced my total daily dose of insulin to less than 30 units. And I have much better control. I know how easy it is to indulge an appetite and just add the extra insulin. It's a slippery slope habit.

4

Terry gives some good advice that I'll add to: There's some (scant) research that poor control w.r.t. excursions also can lead to hypo unawareness (and hyper unawareness) as well. This has seemed to be the case for me.

When I got the standard deviation of my BG profile down so that it wasn't varying nearly as much I noticed I got more sensitive to high BG. I've never lost low sensitivity.

Anyway, something else to keep an eye on.

5

Hey Julez -

Terry and Dave made good suggestions about reducing hypo-unawareness. It's hard to say when you are in danger of losing consciousness. I posted a while ago about losing consciousness after testing at 47 and taking 3 glucose tabs. The title of the post was "Sobering". I've been in the 30s and handful of times without going under although one time I had trouble using my lancing device and meter. We're all closer to the edge than we might think.

Maurie

6

Hi julez,

i have the same story as you as far as time of diagnosis and how pancreas is dying this slow death. ive also started seeing excursions that i didnt use to see, etc.

with regard to your low, i find that when im exercising, i dont notice lows until lower than normal. if im not exercising, im much more likely to notice them in the 60s, but with exercise they sometimes just sneak in, stealth lows, i call them. one time i was running in the park and stopped to test from feeling "off" as you say, not low, and was at 40. i also wondered what would have happened if i hadnt stopped to test/hadnt had my kit with me. it IS very scary.

i also asked my doctor a question about the low number, and she just said its different for everyone, that other variables will be at play, theres just no way to tell.

i make sure that i never have any fast acting insulin on board before i exercise. if it means eating a spinach omeletter for breakfast without toast or carbs, then thats what i eat. before i cycle 7 km to work i eat near zero carb lunch, even though i want something else, anything to avoid having insulin in me when exercising. i just feel its too risky. i plan what i eat around exercise and not the other way round. i sometimes feel deprived food-wise, but it allows me to DO the sport i want WHEN i want. it is not for everyone though.

i also test before, during (if its rigorous lasting more than about 45 minutes) and after exercise religiously.

was your 6 units for the entire meal you ate? maybe if you know youre going to exercise you could lower your bolus by a couple of units?

7

While Terry makes a good suggestion that may be hard to follow, some T1s are just hypo unaware.

I find that my awareness (or lack thereof) is variable. Like you, I have tested in the 40s and been surprised, but also have tested in the low 70s because I am feeling low and I always want to verify before deciding on how many glucose tabs to take.

I have been as low as 17 mg/dl without passing out, but in my pre-pumping days, I woke up in the hospital a couple of times after lows in the 30s.

Dave's point about reducing your variability (aka standard deviation) is excellent, I think. The CGM has really been an invaluable tool for me in this regard.

8

You have received some very good advice…remember also that your meter has 20% or more verability…so your BG could have been 60 or higher. I have suffered from hypo unawareness for years and along with the surprise also comes a unpredictabl response (typical).

9

I've skied the men's Olympic downhill run, a few years ago, at BG = 12 and felt fine. I think that exercising, day after day, has a tendency to push my basal requirements down so quickly that I often don't adjust them fast enough. Here's the thing, with me, at least. The lower I run, the better my physiology adjusts to extreme lows and it adjusts really quickly. So, if I had a BG = 12 today, I would pass out, but after a few days of running high on basal, my physiology adjusts. I think my (and everybody's) body has amazing protective elements build into it. The body is extraordinarily adaptive.

If I had to guess, I'd say the exercise dropped you quickly and so maybe you didn't feel it because you were full of adrenaline, or something. But, eventually, you would feel it. For sure, when you hit 30, I would think. Those fast drops can be really hard on me because I sometimes bypass the stage of being able to sense the low and drop straight into the 'can't stand up' stage. But, that's pretty rare and even if I'm on the verge of passing out, I can always find something to eat.

If you decrease your basal and run a little higher, I can pretty much guarantee that the hypo unawareness will disappear. Although, I don't think your situation is really that severe, yet. Check like a maniac when your exercising, especially because your exercising over a pretty long interval.

10

Hypo symptoms change over time. There are still symptoms, but they may be different than what you initially learned.

When I was just diagnosed, the "adrenaline shakes" were very common with any hypo. Then I went through a stage where "numb lips" were a very common symptom. Now I am more likely to pick up on a hypo by realizing there's "something wrong" with how I'm thinking. Sometimes the adrenaline shakes do happen!!

One thing is true for me, that after a string of hypos over a few days, then my awareness is greatly diminished for a few days after that.

11

Hypo-Unawareness, something new for me to learn about. It seems I have it, I can be in the low 60 and still feel normal. My diabetes is only about a month old so you don't have to be a long time diabetic to have it.

I've been lucky when I exercise in dance class. That is the most strenuous exercise I get. I've been eating an apple or nashi before dancing practice and so far it's worked for me.

12

I think you are spot on here, Terry! Yes, I have definitely greatly increased my insulin intake lately, (within one year I would say). I used to be very disciplined and quite low carb, after I realised that I can eat chocolate after dinner quite well without spiking, when taking enough (or more than enough) bolus,I got into the habit of injecting for "dinner plus.." and then just eating bits of chocolate until I estimated it would be enough to cover my units..Very bad habit, but it would maybe explain those "late hypos" 2-3 hours after injecting..
Like you said, especially when having exercised earlier that day. Thank you for shedding light on this issue. Maybe I have no choice if I want to go back to more stable numbers, but to re-learn to deny myself those "naughty noshes" – easier said than done. I love chocolate very, very much.

13

Tim,

Good response, and it tracks with what I have gone through over time. My early hypo symptoms were shaking in my hands and seeing translucent colored spots along with increased heartbeat and adrenaline rush.

Today, I routinely recognize my lows when I have a problem concentrating. IOW, when I think I'm concentrating on something, but suddenly get distracted by a noise, a light, the interesting pattern of the fabric on my shirt, something I forgot about last week, etc,

14
i find that when im exercising, i dont notice lows until lower than normal

Adrenalin will do that to you :-)

15

Hi Julez,

Sorry you're having hypo unawareness. People say to run yourself higher for a while and avoid lows as much as possible to bring it back. I find my lows are very variable, some I have lots of symptoms, sometimes they come on rapidly without build up or much warning. I have my dexcom set for 80 low because I can drop quickly at that range and then I can monitor what's going on, even at 120 sometimes I can feel it.

Lately, due to vertigo, I'm having more trouble and going up sometimes feels like a low. I'm getting the dizziness with bg changes as well as other things.

If you can get a cgm that would help, it's not perfect but it helps. Overall I'm more stable on a pump so far and I can turn off the basal insulin to help treat a low or increase it for highs.

I have been near to passing out more than a few times I'm sure, usually in the 30's-40's is when I feel like that but if I feel those symptoms I treat and I test later, so I'm not sure. I agree we are closer to it than we may think, it's just pure luck if you don't sometimes so avoid the lower lows however you can. I do it now by treating earlier, turning down basal and keeping an eye on things, the cgm helps me do that.

16

Since I'm 'weird' (that's a medical term used by most of my doctors to describe how I react to things) I suffer from persistent hypoglycemia unawareness, and have for as long as I can remember.

Despite about 8 months of almost perfect numbers - I was a flat-liner - I still suffer from it until they get around 42 or so. My dog usually catches them at night before the CGM alarms or I wake up with the really low ones on my own. Some days I'm testing 15-20 times just to keep a handle on it. My BG's change so rapidly at times, the CGM has trouble keeping up.

I had some really good analysis going until my foot surgery on Dec 29th. Since then everything is out the window. Huge variability in my numbers, a significant increase in Hypos, and unexplained Hypers. Drops of 40-50 points within five minutes is not uncommon and I'll also get some unexplained jumps of over 100!

Hopefully when the MRSA osteomyelitis clears up, I get off the IV antibiotics (2-3 more weeks), the wound closes (2-3 more months), I learn to walk again (?) and I can start to act like a human being again, I hope things return to 'normal'.

17

Jesus, brboyer. Prayers for you that it all clears up.

18

Thanks. The foot is healing nicely, looks like I’ll need some grafts to close it up. I’m picking a surgical ‘shoe’ (one of those metal reinforced padded thingys) tomorrow - my surgeon wants me to start putting weight on it - that’s is going to be fun, NOT!

19

omg, sounds horrible. I hope you start feeling better soon and it heals perfectly in time.

20

Depending on the situation we all have measured low readings without experiencing the sensation of being low. That does not mean we are immediately in danger of becoming unware of hypos. There are multiple reasons for that:

a) distractions like being involved in mentally demanding processes.

b) being in the lower but still normal numbers and then going gradually lower. For example starting with 86 mg/dl could end in 48 mg/dl two hours later without noticing it. First the 86 mg/dl could have been below 70 mg/dl due to the inaccuracy of our meters. Second the relatively small difference of 38 points might not trigger immediate responses like adrenalin secretion. Without adrenalin you only have secondary signs of being low like visual distortions or general feelings of uneasiness. It might take a while to draw the correct conclusion from these vague feelings. With experience you will learn to understand these body singns earlier.

c) cold temperatures have their own demands for energy. It might be less demanding than hot weather but it can not be ignored. Any time you expose yourself to cold temperatures your body might consume more energy than you think. At the same time your hands are supplied with less blood flow than usual. This might cause measurements that do not directly correspond to your current glucose number in the main blood vessels. For me the numbers with very cold hands are often 10 min behind the real numbers. This makes it more likely to misjudge the current situation.

d) usually my dosage is for my typical level of activity. My insulin factor (I measure the carbs in exchange units) or the Carbs per Insulin (if you measure in gram) are optimized for this activity level. As a consequence I have to compensate proactively for any activity level higher than normal: 15min of binking => add 5g of fast acting carbs, 30min of biking => add 10g of carbs etc. Again a question of experience.

I would also like to question your low carbing - at least the extend. If you crave for energy and start to eat chocolate to compensate that you really should consider to increase your carb intake to 100g per day or more. Low carbing is an important instrument to handle spikes after meals or to reduce your insulin intake or to loose weight. But if you do not experience huge spikes I do not see why your moderation should be that strict. For me higher carb loads starting with 30g are easier to handle because I am very sensitive to insulin - I even use a half unit pen.