Autonomic Neuropathy and Hypo-Unawareness

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 www.diabetes.niddk.nih.gov/dm/pubs/hypoglycemia.

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!
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