Autonomic Neuropathy and Hypo Unawareness

I originally posted this as a blog but was asked if I would put it in the forum section instead so am posting it here.

On Monday, I read a post on TuDiabetes where someone had asked about hypo-unawareness. Hypo-unawareness occurs when you lose the ability to detect that you are low. When most people see the term hypo-unaware, they think that the cause is always from too many lows and their response is to tell the person to raise their blood sugar for awhile and their awareness will return. Lows are not the only cause of hypo-unawareness. It can also be caused by autonomic neuropathy.

Most people are familiar with peripheral neuropathy that affects your feet, but a lot of people are not familiar with autonomic neuropathy. Autonomic neuropathy is nerve damage that affects your internal organs – it can affect your heart and cause blood pressure problems, it can affect your stomach (gastroparesis is a form of autonomic neuropathy), it can affect your bladder, it can affect your lungs, it can affect your blood sugar and ability to feel lows, it can affect how you sweat, it can affect the pupils of your eyes, and in men, it can cause ED. Just because it is affecting one organ, that does not mean that it is affecting every organ in your body.

In my opinion, autonomic neuropathy is sneakier in its attack than peripheral neuropathy – that is just my personal opinion based on what happened to me and is not backed up by any scientific data. When you start having numb feet or pain in your feet, you know right away something is not right. In 1995, I had the flu and got really sick. I was admitted to the hospital, and while I was there, they did an upper GI. That report mentioned that my stomach was slow to empty, which is a classic sign of gastroparesis. Back in those days, I did not know to ask for copies of reports. In 1998, I started having some other stomach problems and had an EGD done. Even though I had not eaten in over 12 hours, that report stated that I had food in my stomach – again pointing at gastroparesis. A couple years later, I changed doctors and asked for copies of my records and saw those reports.

It was 2003 until I actually started having very noticeable stomach issues that I knew pointed to gastroparesis. I took copies of the 1995 and 1998 reports with me when I saw a gastroenterologist and he agreed that I probably had gastroparesis. He ordered a gastric emptying test and it was confirmed that I had gastroparesis – 8 years after the first test showed that I had slow stomach emptying. Prior to 2003, nothing jumped up at me and said, hey you might have gastroparesis.

I also have gustatory sweating – that is when your face sweats after eating certain foods. It seems to happen if I eat something spicy or even tomatoes. It is not consistent in happening and sometimes I go several months without it happening. That started prior to my being diagnosed with gastroparesis.

When I was going thru my foot mess, prior to one of the surgeries I had, I started having problems with low blood pressure. My PCP at the time dismissed it because he felt my foot was the only thing we should be concerned about. I went about 3 more years until I started having more problems with it and was finally told that I have autonomic neuropathy (that was in 2009).

After I had my cataract surgery, I had to have laser surgery to remove a film off the lens in my eye. That was done at my doctor’s office and they were having trouble getting my eyes to dilate to where they wanted them. My eye doctor said that brought back memories of the day I had my cataract surgery when my pupils did not seem to dilate properly. I get dilated eye exams all the time and prior to that day, no one had ever mentioned an issue with my eyes not fully dilating. After I was told that I had autonomic neuropathy and started reading about that, I saw that pupils not dilating properly is another issue with autonomic neuropathy.

That brings us back to hypo-unawareness. I am copying one paragraph from a discussion about autonomic neuropathy on the NIH’s website. If you want to read more about autonomic neuropathy, you can check out the full article here.

Hypoglycemia Unawareness

Normally, symptoms such as shakiness, sweating, and palpitations occur when blood glucose levels drop below 70 mg/dL. In people with autonomic neuropathy, symptoms may not occur, making hypoglycemia difficult to recognize. Problems other than neuropathy can also cause hypoglycemia unawareness. For more information about hypoglycemia, see the fact sheet Hypoglycemia at

I think it is important to learn what is causing the hypo unawareness. If it is caused by too many lows, then certainly raising your blood sugar for awhile will help reverse the hypo unawareness. If your hypo unawareness is caused by autonomic neuropathy, then raising your blood sugar will only make the neuropathy issues worse. Hypo unawareness caused by autonomic neuropathy is happening because you have nerve damage and in that case, it will not be reversed unless you reverse the nerve damage. Running blood sugar higher will not help in that situation.

You want to try and test your blood sugar as much as possible – the more you test, the greater chance you have of discovering that low. Unfortunately, those lows can still sneak up on you. This happened to me during the period that my Navigator was broken:

picture of Aviva meter with low blood sugar of 13

Do some basal testing so that you know you have your basals set correctly and that is one less variable that you have to worry about. Consider eating lower carb so you don’t have as much fast acting insulin floating around. If you have gastroparesis, it helps to break up your meal doses if you are on MDI or use the extended bolus on a pump. If you are able to, get a CGMS so you can set alarms to alert you when your blood sugar is low. The Dexcom has been a lifesaver for me.

I have read about people reversing peripheral neuropathy. As I was writing this, my first thoughts were to say that I have not seen those same stories about autonomic neuropathy. However, I know that Dr. Bernstein has said that he had gastroparesis and was able to reverse it. Dr. Bernstein said that took 14 years.

The delusional optimist in me believes that it possible. I also both believe in and have seen several miracles in my life so I am hoping for a reversal in mine. I know it is not going to happen without some effort on my part. I might have some days I fall down, but the important thing is that I get back up and keep working on it. To take a line from What Faith Can Do by Kutless, “It doesn’t matter what you’ve heard, impossible is not a word. It’s just a reason for someone not to try.” I am not going to give up trying!

I was the person who posted that discussion. A million thank yous for this information! Knowledge is power! I just want to learn everything I can.
BTW, yesterday at 7 pm I was just “puttering” around the house, and boom no warning - white clouds in vision and could hardly see, grabbed my juice and slammed it down without checking my bg (because I was alone and was really scared). Then I immediatley checked my bg and it was 29! Slammed another juice. Waited 15 minutes, checked bg again, 59. Waited 15 minutes, rechecked, 89.
The more I learn, the more I realize I have to learn! (Hell, I’m still learning the “lingo” LOL!)

I know the first time I actually passed out, it came out of nowhere. I think we are contstantly learning because as soon as you figure something out, the rules change and you have to start from scratch!

Thank you for this wonderfully informative blog. Critical info for everyone to be aware of. I also have gastroparesis & hold out hope than one day I will have a normal stomach. Gastroparesis sure adds another obstacle to BG control. Whether I have other autonomic neuropathies remains to be seen. Thanks to your blog, I’ll pay more attention to possible signs

Thanks Gerri! Dr. B reversed his gastroparesis, so there is hope for both of us.

Hi Kelly. I have had slow digestion for years, and have no idea how to prevent it’s developing into full-blown gastroparesis, except perhaps try to keep reasonably good control of blood sugars. I’ve found that the difficulty, esp. at dinner time, is that I’m liable to go low right after eating, followed by high a few hours later. Controlling my blood sugars with the pump is not too difficult, but not so easy on MDI. I’ve found that the best way for me on MDI is to make judicious use of both Regular and a fast-acting (I use Apidra). With a small snack of mixed foods, I mix the two insulins together in one syringe. With dinner, I take half the bolus in one syringe of Regular, the other half in a second syringe with Regular. Anyway, thanks for your helpful and knowledgeable discussion. It’s hard to think about these complications, but if we have them, we sure have to deal with them.


I have the same dinner regiment as you using the same insulins. Not perfect, but it helps a lot. My gastroparesis was diagnosed from my lows after eating. Fortunately, I had an endo who was aware of what was going on.

Knew Dr. B reversed his, but didn’t know it took 14 years.

I remember reading that. I will try to find the link and post it here.

Trying to keep reasonable BS is the best way to stop it from getting worse. I know that thyroid problems can also cause gastropareiss - I didn’t believe that the first time someone told me that but they do have it on the Mayo Clinic’s website. I split up my meal doses with MDI also. I love Apidra because it gets out of my system faster and makes it easier to stack insulin.

Wow, thank you so much for this information. I think you just provided more info on this than any endo ever has! I am really concerned about two things I’m experiencing - increased sweating (at weird, random times) and bouts of diarrhea. The diarhea has thankfully gone away for now, and its disappearance seemed to correlate with getting some better control over my BGs after going back on the pump. The sweating comes and goes. It seems that my body just overreacts when I sweat - situations in which most people sweat a little, I sweat buckets. I asked my doctor if this was related to my having T1D and she said that it probably was not and was more likely just the result of my being very physically active.

Right now, I am really trying to focus on keeping my BGs in tighter range. I’m trying very hard to avoid the scary lows and highs. Even if I stay in the 140s-160s all day, I feel that’s better than swinging betwen 50 and 270 (which happened yesterday and left me feeling pretty rotten by the end of the day). There has been some evidence that suggests avoiding wide fluctuations when you have T1D is more important than staying under 140.

What scares me about the autotomic nervous system damage is the connection with dead-in-bed syndrome. That really, really frightens me…

I would think that the sweating is definitely from autonomic neuropathy. You should print out the stuff from the NIH site and take that to your endo. I think with a lot of this stuff, they recognize the major problems (like the BP problems) but not all the little ones that go along with it.

I have seen some of the studies about the swings being worse than being high. I always look at my standard deviation when I look at my reports – that is more important to me than just my average. I have had a good average with a high standard deviation & a higher average with a lower standard deviation. I would rather have the lower standard deviation if I have to pick one!

I am also afraid of the dead-in-bed syndrome. I cringe every time I read about another person having that happen to them.

There are different tests depending on what problem you have. I am not sure how they would test for the sweating. The one I have is the gustatory sweating that gets triggered after certain foods. When I was looking up a couple things to write this, I found out some people sweat too much and some don’t sweat at all and then have really dry skin. I realized that I don’t sweat anymore & my skin is dry.

The gastroparesis gets tested by a gastric emptying test. The blood pressure problems, there are a couple things they do – they take your BP sitting down and again as soon as you stand up. There is also a tilt table test they can do.

I would also rather have a low than a high as long as I don’t pass out! I try to avoid the swings if I can, but that is hard sometimes when you get on a never ending roller coaster.

Mmmmm. That is very interesting. Like you said, I have not heard of this Autonomic Neuropathy. It could be something worth me looking into. How is it tested for? I fail to detect 9 out of 10 hypos or free falls and am always caught by surprise. Yes, I should test more, but I do not always think about it, but I do get taken by surprise as I have said.

I do get the gustatory sweating, but I am not sure what the triggers are. I just know that I tend to have to strip off when eating!!! Rather embarassing. I had a severe hypo - 1.1 mmols when with my sister which I did not notice coming on and we went to a sushi bar to get some food in me and all she was bothered about was me sweating and that I should wipe my face! I know my face was sweating (and everywhere else - my shirt became see-thru!) but it was the only time we nearly fell out while I was staying with her! I knew that I would stop sweating once my sugars had raised to an acceptable level, but all she was bothered about was “it does not look very nice!”

Here are some of the tests that are typically done

Thanks for that link Gerri - I was wondering if they could test the sweat stuff and apparently, they can.

You get the gustatory sweating pretty bad Latvianchick. Fortunately, mine is just on my face.

Hi Kelly. This discussion certainly makes one think. After some thought, I realized that I have had some reversal of complications. Really. When I was dx’d approx. 18 years ago, I had some numbness in my feet and frequent “pins and needles”. The partial numbness remains but has not worsened, pins and needles are totally gone.

As for the slow digestion, it gradually got worse for years, so that I just had replacement liquid drinks and no food during the day, until I started on the pump. Now I eat snacks or small meals of real food through the day; a liquid meal is an option and not a necessity. These minor, but real, reversals came after finally getting reasonably good control with my pump following those years of roller-coasting.

I’m on MDI part time, but have found methods to get similar results as I get on the pump. Also when I got the pump I learned about i:c ratios, how to do proper corrections w/o stacking, lower carbs and carb counting, etc., things that people now can learn from reading such books as “Think Like a Pancreas”. It all added up, I’m happy to say.

That’s such great news Trudy. Hope everything keeps improving! Cheers! Joanne

I also find it interesting that the doctors really never talk about and you read relative little about these complications. My guess is they don’t hear much about these complication because there is very limited treatment options. They can’t prescribe a pill, complete a surgery or recommend another treatment. I never heard one word about diabetes causing problems with the stomach until the day I started having issues. I knew I was in trouble when the treatment recommendation I got was “loosen your belt”.