FUDiabetes

Does everyone eventually get hypo unawareness?


#1

I read this claim in the magazine of the Dutch Diabetes association that most diabetics become hypo unaware 20 - 30 years after diagnosis and this process is accelerated by the frequency of hypos. They also claimed that already 5 years after diagnosis, many have somewhat impaired hypo awareness. Is there any research that supports these claims?


#2

My very small personal research study with only one long-term participant (who has a share of hypos) does not support this claim.


#3

If it is only one person then how do you know if that person is reliable?


#4

Although (seriously) our previous Pediatric Endocrinologist Nurse Practitioner switched focus and now works exclusively with Pediatrics who do not have self awareness of Hypos.

As this group (of Pediatrics) obviously is limited in how long they could have had T1D, I would imagine that there are various reason WHY one could be unable to feel a hypo.

I would be suspicious of the claim that “… most diabetics …”. Without significant evidence and proof, the word MOST seems a tough one to believe.


#5

Let me tell you, that person is incredibly UNreliable.


#6

Perhaps they’re using a certain definition of hypo unaware. My hypo symptoms were much more obvious right after diagnosis. I never shake when I experience a hypo now, but that was the primary symptom my first few years. The shaking was very pronounced, bordering on flailing. If I drop low enough now, I will experience an occasional sort of jerking motion, but no shaking.

I don’t consider myself hypo unaware. My symptoms are just less pronounced (eg hungry, anxiety, etc).


#7

I had an endo make some dumb comments to me about this. I was asked if I got dizzy or started to sweat a lot or had irregular heartbeat when I was low. I said I could feel low, but did not always feel those particular symptoms. I was told that if I did not have physical symptoms, I had hypo-unawareness.

Seems pretty dumb. If I feel low and know I need something (almost 100% of the time before the Dexcom tells me), but I do not have a manifestation of physical symptoms, according to this endo I have hypo-unawareness.

I don’t agree with their definition. If I know I am low or know I am going low, to me that means I do not have hypo-unawareness.

To me being able to function at 50, but knowing I am 50 is not the same thing as unawareness.


#8

My situation is a bit different because I was considered quite hypo unaware as a kid. As in, even during the first year after diagnosis. I could drop to the 1s mmol/L (<35 mg/dl) and feel perfectly fine. So I’m not sure exactly what the cause of that was, except for the fact I did have daily lows (and sometimes multiple times a day) back then due to trying for tight control with R and NPH.

As an adult my symptoms are still pretty vague, but unlike when I was a kid, I’m much more attuned to how I’m feeling. So I can often pick up lows at, say, around 3.0 mmol/L where I otherwise might not notice. I still drop quite low at night or when I’m doing something distracting. My symptoms are very vague and have never really involved things like shaking or sweating… It’s more an odd sense of weakness, inability to concentrate as sharply as usual, a slight lack of coordination, or a sense that I’m sort of hungry. If I get really low there are much more noticeable symptoms, but by the time I get that low I’m also feeling close to passing out, so that’s not good.

Interestingly, I thought that a CGM would help me regain some better awareness of lows, but it hasn’t. When I’m wearing the CGM it of course will alarm when I’m low. But during times I’m not wearing it, or the odd time it misses a low, I often don’t notice till I’m 2.8 or 2.6 mmol/L during the day or below 2.2 mmol/L at night by the time I test.

Weirdly, I’ll often feel “more low” after I’ve treated and as I’m on my way up than I will when I’m actually low and haven’t tested yet. Like @Katers87, I don’t really consider myself truly hypo unaware, just someone who doesn’t have very strong low symptoms.


#9

I had to confirm in writing that I am hypo unaware in order to cajole my insurance company to cover CGM. My personal experience is hypo awareness comes and goes at moderately low BG if say 50-60 depending on whether I am awake, distracted, busy with other things, etc. but cold sweat, hunger, acting like a drunk kicks in in the 40’s if I am still dropping.


#10

I’ve only lost some awareness, and I did notice it began in the 20-30 year period.


#11

If it’s the one person I think it is, we know he’s not.


#12

Sounds more like hypo-physical-unawareness with a strong presence of hypo-mental-hyper-awareness. Like spidey senses. Did you explain it like that?


#13

You’ve asked about research, and I’ve got nothing to contribute there, but I definitely have a bad case of impaired hypo-unawareness— except that “impaired” doesn’t even really capture it. “Unreliable” feels better. In my case, I feel like I can start feeling bad fast at a 60 but just happen to catch a 30. I’ve spent some time thinking about why this would be, and I’ve come up with two factors that seem to have some kind of effect. The first is how fast of a drop I’m experiencing. A fast drop is just harder, and I am guessing I have few fast drops that I don’t feel at all, whereas a slow, prolonged fall might produce fewer symptoms. The second is whether or not I’m doing anything that might mask some of the earlier symptoms. The cold is a big one for me. I just don’t feel lows in the cold, but even things like if I’m already hungry and tired, or if I’m feeling nervous about something. I think a certain percentage of my lows are harder to feel because whatever symptoms I have, I’ve already explained them by something else— and it takes longer to figure out I’m low. Oh! And sleep. The best mask of all. Definitely harder to feel when I’m asleep. Some of my lowest numbers, including occasional 20-somethings— I catch in the morning. The good news is nothing spikes my blood sugar than coffee, so it’s coffee to the rescue again.


#14

Yeah. That is stupid.

Seriously.


#15

When we first got the cgm maybe seven years ago or so, there were numerous questions about hypo unaware. It was not specifically said that the insurance would only cover the cgm if the patient was hypo unaware but that was certainly implied.

I kinda felt like it was an interrogation.

Fortunately, I have no problem repeating myself word for word 10 times in a row.

I told them that when my child is sleeping, they are unaware of their BG including low BG.

I did not feel it necessary to provide any additional information and they did not get anything else out of me. And the cgm was covered. I assume (yeah) at this point in time, they don’t focus so much on hypo in regards to cgm coverage.


#16

I enjoy, somehow perversely, that you had to tell them that.

I understand that some folks wake when they’re low sooner rather than later. But somehow having to tell a doctor that makes me laugh. Like, really? You didn’t know that? :thinking:


#17

40 years since diagnosis. Still aware…


#18

To get my CGM my Dr asked very specifically if I wanted my hypo unawareness Included in my medical chart. Since it was just another manifestation of my polyneuropathy I answered yes. Prior to actually obtaining a cgm and after the inclusion in my chart I had a serious hypo resulting in my dl being medically revoked. My knowledge that I had hypo unawareness eventually was used against my by the dmv at a medical review board. It took some fancy Dr talk from my Endo and an agreement with the dmv to save my license. I’m clinging to that thing in a death grip and not letting go.


#19

Ugh. The dark side of medical records.

I’m sorry that happened. Must have been a really stressful time. I’m glad you had an endo willing to go to bat for you on your team to help you get it sorted out.


#20

My Endo is why I walk this planet. My Endo is my 2nd biggest cheerleader after my spouse.

It will be a dark day when my Endo retires… Sigh