Hypo unawareness and being On The Spectrum

Ok, so here’s the deal. I’ve been T1D for 10 years, and from the start, I’ve been VERY hypo-unaware. I was diagnosed with T1D at age 23. Overall I’ve been healthy, never had a major hypo episode that required hospitalization, but I’ve had many many hypos where I’d be in the 60s without a single drop of sweat.

I was also diagnosed with Aspergers at age 30. I’m certainly not a typical Aspy, but a have my special qualities that would make me unique.

What I’ve been wondering lately is if there’s some sort of connection with being on the spectrum and my hypo unawareness. Sometimes I can feel it, but typically, my lows go unnoticed. In the past week, I’ve had about 5 lows in the 60s range. Not sure which ones I felt or not, but five in one week seems like a bit much…

If there is such a connection, or you believe that there is, please include your thoughts.

When I get back to the US, I’m really considering getting and training a hypo alert therapy dog. I’m living in Japan right now and having a therapy dog is a bit of a challenge.

I’m not on the spectrum but I have gone though many periods of hypoglycemia unawareness. For me, it resulted from having daily lows in the 50-65 mg/dl zone. They weren’t severe but I was having them almost every day. I had a heavy hand in my insulin use. Back then I was taking more than twice the total daily insulin than I am now. Surprisingly, less insulin produces much better control for me.

From what I’ve read and from my personal experience, the best way to restore awareness is to not have any lows, say below 70 mg/dl, for 2-3 weeks. You might try adding some exercise to correct high blood glucose instead of adding insulin. It doesn’t work in every situation but the more you do it, the more effective it is.

Good luck. I hope you get some more direct answers from a T1D that is also on the spectrum.

1 Like

Thanks Terry,

And I’ve been in the same situation as you. Even as recent as May, I was taking 10 ui Humalog per meal to cover 50 carbs or so. Now I’m sitting at a 1:8 ratio since I’ve changed my overall lifestyle (no longer own a car, living in a foreign country). I’m probably going to hit 1:10 for lunch and dinner soon enough.

From this point probably should keep a note as to whether I’m hypo aware / unaware in my comprehensive daily log.

How’d you reduce your ratios so much? I just keep needing more and more no matter how active, physically fit, etc I am, and how few carbs I eat. I’m at about 1:4 for breakfast, 1:5 for lunch and dinner 1:8-9 at dinner

I am not on spectrum so I am unable to comment about that. I have had T1D for 40 years, and have gradually developed increasingly severe unawareness of hypoglycemia. I would find myself feeling ‘normal’ at bg in the 40’s, which was scary. CGM has essentially solved this problem for me - alarms are there to keep you in the safe range. Furthermore, I can confirm what @Terry4 suggested: by deliberately keeping bg above 70 for some time (about a month in my case), I was able to regain some hypo awareness - I can now feel 60’s fairly consistently.

Ps… I don’t think it’s uncommon to feel fine in the 60s. In my opinion hypoglycemia isn’t a number, but a symptom and for many people those symptoms just don’t start until below that point. Non diabetic people frequently have blood sugars in the 60s and it is completely unremarkable… I’d really only start worrying about it if “hypoglycemia unawareness” was causing you real problems, like having severe debilitating hypos with no warning…

So more directly to your question— I don’t think not being able to feel lows in the 60s is necessarily related to your other condition, I think it’s normal for someone practicing tight control, or someone who doesn’t even have diabetes.

1 Like

It’s pretty consistent that I start to feel hypo symptoms right around 65 mg/dl. For me, that’s where I peg the beginning of hypoglycemia. I won’t treat a 68 that’s steadily moving sideways with no IOB. I also fingerstick to verify my CGM number at that point. I consider 68 a normal blood sugar and will try to ride that as long as I can. I do have to be a little more attentive since at that point there’s little margin for error.

On aspect of being on the spectrum is that you can focus on certain things to the exclusion of others for extended periods of time. If you find that you undertake an activity and suddenly realize hours later that you are absolutely starving then you may have this aspect of the condition. For many this can be a gift, but it can have some downsides. On downside is that you may not be aware of strong hypo feelings. As others have suggested, a CGM can be vital in this sort of case.

1 Like

You think a cgm is appropriate for someone who reportedly doesn’t see levels below 60? Just curious— I would agree for sure if he was having severe lows like 20s, 30s… But to me 60s are pretty hard to call hypoglycemia— I think that’s why a lot of insurers require a history of “severe hypoglycemia” or “hypoglycemic events” which to me means something other than symptom free 60s.

Having a child on the spectrum (evidently much farther into the spectrum than the op) I think that a cgm would be so intolerable to him that it would only be usable in life/death situations… But that’s certainly not the case for all

1 Like

Hi Peter. I am not On the Spectrum but I do know a lot about hypo unawareness. I don’t feel hypos and can function quite well at 60 and even far below. So I test a lot. All efforts at regaining symptoms have not worked for me. So I simply try to keep my bg in a normal range at all times and correct if/when necessary.

I don’t have any poor feelings or worries for having this trouble. I have been living sans symptoms for most of my diabetic life. Nowadays it is actually an identified condition with it’s own dx code and stuff on the medical chart. YAY - no fight to get test strips.

Do keep a note in your log. One thing I notice for myself is that when my mood or environment is surrounded by stress or turmoil, chaos, lost, scared I am more likely to go low. I carry glucose, smarties, or dum dums everywhere.

One of the more subtle symptoms I experience is increased sensitivity to light and sound. Regarding light, I first noticed it when I was riding a bicycle on a tree covered lane and found the erratic flashing of sunlight on my face as moved from tree-shade to sunlight to be irritating. With sound I would become irritated, for example, by the background tableware and dish sounds in a restaurant as the bus staff removed and handled these items. This is ordinarily a sound we all just filter out and don’t consciously notice.

Another, more subtle, symptom of hypoglycemia that affects me is that I become more alert and interested in the task at hand. This, of course, is a symptom that we usually enjoy but, for me, it hides an oncoming hypo. If I’m writing, my inability to compose is a dead give away that I’m sugar deficient.

In my opinion, absolutely yes. To clarify: there is nothing so terrible about being at 60’s or even at 50’s. However, unawareness of being at 60’s or 50’s is a clear indication that you may easily become (and likely already are) unaware of bg dropping to much lower, potentially dangerous levels. This is why CGM is often prescribed specifically to address hypo unawareness, and I think justifiably so, even if one has not experienced debilitating hypos.

But it does not work for everyone and for folks who have no awareness and the bg is a gassed up race car from time to time the CGM is no help at all (beentheredonethat). Be aware that it does not indicate the RIGHT NOW number and so acting can be delayed, or even unnecessary. A stick is necessary to confirm in my own experience and opinion. Dragan, if you are freaking over a bg of 60s and a CGM is an option for you then go for it.

Not trying to discourage anyone from using a cgm if they feel it helps them… But there is another side of that coin too-- and that’s that, in the grander scheme, if more and more people are using them without documented proof that they justifiably ‘need’ them, it will lead to more and more restrictive rules regarding insurance coverage for them— one doesn’t have to search very hard on this forum to find people discussing their coverage not allowing them one…

Sam, As far as reducing my ratios, I seem to have a summer / winter ratio set. I swing back and forth every year. I’m not sure if it’s environment related or activity related. I’ve also moved to Southern Japan, and the weather is Florida like (I’m originally from Boston). I haven’t had ratios like this in November for nearly three or four years. My blood sugar also spikes in the morning / afternoon if I don’t take a long walk.

I think you’re right about defining hypoglycemia- it’s not a number but a symptom.

And you’re absolutely right about CGMs, in my case at least. I don’t think all people on the spectrum would be sensitive to them, but I have had my experience with them. I barely lasted a week with one connected to me. This is particularly why I’m interested in hypo aware dogs.

And Brian, I certainly fit that category of being on the spectrum. I use a series of alarms on my iphone to alert me when to eat lunch and dinner (breakfast is like clockwork), and I have considered having an extra timer in my meter case to alert me to test three hours after meals.

I know that sometimes I can feel my lows, but as far back as I could remember, I wouldn’t feel most of my lows even within the first year after diagnosis. As far as a CGM is concerned,

I’m trying my best to stay in control in the past month. If I were in the US, this would be a cakewalk, but in a foreign country with many different rules of insurance and healthcare that I’m unfamiliar with, I want to make sure I’m showing my best numbers.