Type 1 Diabetes Hypoglycemia Deaths Per Year
This JDRF ad sparked controversy but reveals a fact that needs to be known. 1 in 20 Type 1 Diabetics will die from hypoglycemia.
Several times a year I hear of severe hypoglycemia taking the life of another Type 1 diabetic. Most of us are familiar with “Dead in Bed” syndrome, which is the term used to refer to severely low blood sugars taking the lives of children as they sleep. Since these deaths almost always can be prevented with proper management of the disease, I set out to discover just how many Type 1s we’re losing every year, in particular due directly to severe hypoglycemia. Sure, a far greater number of diabetics are passing away indirectly from complications brought on by years of mismanaged blood sugars, but given that I’ve landed in the ER twice since being diagnosed in 2004, I’ve grown curious as to how many Type 1s are dying directly from severely low blood sugars.
Finding an answer to this question proved to be far more difficult than I had imagined. In fact, according to the Medtronic website (makers of my Revel Insulin Pump and CGM) and various other sources online, there is no official mortality rate for how many people die each year from hypoglycemia. This is unfortunate news. However, it is not due to mere ignorance. The problem is that after death the body can still release glucose, thereby making it difficult to determine if the deceased had suffered a hypoglycemic incident at the time of death.
Although there is no official statistic for the number of Type 1 diabetes deaths per year from hypoglycemia, I did come across a staggering figure that the JDRF (Juvenile Diabetes Research Foundation) displayed in an ad back in November of 2011. It states that 1 in 20 people with Type 1 Diabetes will die of low blood sugar. This figure is based on a number of studies by researchers P.E. Cryer, T. Deckert and W.M.G. Turnbridge, in addition to the Diabetes Control and Complications Trial that ran from 1983-1993. The JDRF ad itself displayed the photo of an eight-year-old Type 1 girl named Piper and was used to put pressure on the FDA to lay out a pathway to bring the artificial pancreas to market (a device that holds a great deal of promise for Type 1s, but also comes with a great deal of risk if it is not made to be foolproof).
The JDRF ad caused controversy among Type 1s, some of whom openly expressed their anger by calling the ad “sensational,” “painful,” and “unnecessary.” I beg to disagree. Regardless of what the JDRF’s intent was, knowing that statistic just might shock Type 1s enough that they do everything in their power not to be part of the 5% who don’t make it and rather join the 95% who do.
My name is Kevin Lang and I am a Type 1 Diabetic who was diagnosed in May of 2004 at the age of 27. My last A1C was 6.0 in May 2015. I used to use daily shots of Lantus and Novolog to control my blood sugar until I switched to the MiniMed Paradigm Revel Insulin Pump in February 2011. To learn more about me, follow the about link in the menu bar.
I am disappointed that this article is just aimed at children with type 1. I think the shock tactics are an eye opener and with good reason but it does make me wonder if it would just make parents absolutely paranoid. It’s not just children who are affected…
Although I understand your point of view, I don’t agree entirely. I AM the mother of a type 1diabetic and I Llong for people to know more about the real dangers of this disease. As a family we have faced unbelieveable ignorance and indifference. She goes to a small private school that is tun out of our church. It has been 51/2 years since her diagnosis and I STILL fight for her safety at school. She is very active in sports so everyone looks at her and says ” she looks so healthy”. While I am SO thankful that she is healthy, it can also be a curse in that people don’t get what you go through- what SHE goes through- and they do NOT get the real dangers and CONSTANT threats from this disease. The general public has to know about these things. They need a real education. A diagnosis of type 1 is devastating enough- dealing with people is excruciating!
Catherine, this article is not just aimed at children with Type 1, but rather all Type 1s, which is what the statistics I’ve cited represent. Dead in Bed syndrome is more commonly associated with children, since we lose more Type 1 children in that way than adults. However, when I had to be rushed to the ER two years ago, I had gone low while sleeping as well. I agree that it sometimes seems like people automatically think child when they hear “Type 1″, forgetting that those children grow up and still have the disease, or, like myself, weren’t diagnosed until adulthood.
Good article Kevin. My daughter was diagnosed two years ago just after her third birthday. She uses a pink Animas ping pump and we manage her as best we can. My daughter’s last Aic was 6.6 our lowest yet but as one endo told the price of a good A1c is flirting with lows. We are definitely paranoid about lows either at night or while she is at school. We check her BG at 3 am every night and unexplained lows remain a periodic reality. I just stumbled across your blog and enjoy your writing. Cheers from Vancouver.
I appreciate the article, and anyone disappointed about the focus on Type 1 (which is more well known linked to children) is splitting hairs. The dead in bed syndrome is what keeps my wife and I vigilant beyond vigilant with our 8 year old son who was diagnosed in Aug 2011 with Type 1. We are determined he will not be a statistic and will live a long, productive life. Anyone want to see a child who won’t let Type 1 stop him AT ALL, please check out his video on youtube.
We are well short of a million hits. Oh well.
http://www.youtube.com/watch?v=ph0UMNKPvrk
Hi, thanks for the article. I am a Type 1 diabetic. I use the Mini Med Paradigm Revel pump also. I have been using an insulin pump for the past 26 years. I started out with MiniMed, and I’ve used their pumps ever since.
My question for those that are reading this blog is:
Has anybody experienced paralysis when their blood sugars are extremely low?
Two years ago, I awoke and I was completely paralyzed on my right side. I could turn my head, and my speech was normal. I woke my husband up, and said “Somethings not right!” He then asked if my blood sugar was low, and at the time I had no symptoms of low blood sugar. He rushed and brought me orange juice anyway. I drank two 8 oz glasses of juice, and slowly my right side began functioning again. Why, it didn’t alarm me more as to being paralyzed with a possible stroke, I don’t know. I called my physician and he immediately wanted me to come in. He then hospitalized me, and they ran a lot of test. All test came back normal. Thankfully. The only conclusion was that my blood sugar had dropped dangerously low, which caused the hemi paralysis.
Jump now to this week, and I have had two mornings of waking up with hallucinations. This morning was the worst. I was screaming and crying at the top of my lungs. My husband was holding me and saying “it’s ok, it’s ok” , I was convinced that there were small babies drowning right beside me and I couldn’t move to help them. My right side was slightly paralyzed this morning also. This really scares me.
I have some CGM sensors, but don’t always wear one, mainly because they are so expensive, and they only last 4 – 5 days per sensor. I will put one one this afternoon however.
Just curious as to has anybody else experienced paralysis with low blood sugars?
Linda, I tried to find more information on paralysis related to hypoglycemia. I found the following excerpt in the book Understanding Insulin Dependent Diabetes, “One-sided Weakness (paralysis): It is not known why, but on rare occasions some people experience weakness (or paralysis) on one side of the body with a severe insulin reaction. This can last for one to 12 hours but eventually clears. It is particularly worrisome to doctors in emergency rooms. They often insist on a very expensive evaluation to prove that a stroke has not occurred.”
Another article explains it in a similar way, “…a rare symptom of hypoglycemia is unilateral (one-side) hemiparesis (weakness) or hemiplegia (paralysis). This is related to the neuroglycopenic effects but the exact pathogenesis is unknown.”
Linda, what was your blood sugar at when you experienced this symptom? I can understand the doctors wanting to rule out a stroke, despite having to do a lot of tests in the process. As I’m sure you’re aware, you need to pinpoint why you dropped on those occasions. Could your basal be too high during the night? Were you on a different schedule than normal? a different diet? The hallucinations are a more common symptom of severely low blood sugar. I wish you all the best in getting your blood sugars under more stable control. Take care.
My daughter apparently was unable to move or speak but she could see and hear everything. Her brain wasn’t functioning well enough to know what was going on though. fortunately her husband saw her get out of bed to respond to the dog and wondered why she didn’t go any further than the door. He worked out she needed glucose and got it for her.
I woke one day, my sugar level had gone so low I wet the bed, my body’s last shout at waking me, I realized my sugar level was low, grabbed my phone dialled 999 and when I went to speak I couldn’t speak properly, scarey, I managed to tell them my address. I tryed to get out of bed and just fell on the floor my legs wouldn’t work.i dragged my self to the front door to open it for paramedics…. That was along time ago on insulin where you had to eat at certain times.
[…] thing. Although there is no official mortality rates for hypoglycemia, the JDRF determined about one in twenty people with type 1 diabetes will die each year due to low blood […]
I am befuddled by the wide use of insulin pumps and no mention of Continuous Glucose Monitors when they alert and alarm diabetics with low blood sugars and could virtually eliminate “Dead in Bed.”
Good point. I’ve mentioned Continuous Glucose Monitors quite a bit on this site and it’s great to see that they are becoming less invasive with shorter insertion needles. I just got Medtronic’s new CGM but I haven’t tried it yet. I’ll post a review after I test it.
I understand the concept of cgms, alarms and even the 530G of Minimed with the threshold suspend feature, but there are still times when severe lows occur with less than a minute warning. The “dead in bed” events still happen despite vigorous efforts.
CGMs can provide an earlier warning by alerting the user when blood sugar is dropping quickly. They can be a lifesaver, but they are certainly not 100% accurate. However, with severe lows, every second counts. I haven’t tested the threshold suspend feature yet. It’s effectiveness will obviously rest on how accurate and reliable the CGM is.
My Husand won’t use his. Says it drives him crazy always reminding him. Nice huh!
My child was 1 of the 20 who die. I see people say if you take good care of yourself and manage your blood sugars you have nothing to worry about. That is untrue.
You can do everything right but the unpredictability of it can take a life in a matter of minutes. My daughter passed out while taking a bath and drowned.
It is hard to get the statistics as you said because he death certificate says drowning, it was really her diabetes. I wish it stated that so we can really know what the statistics are.
I know this is a old post but I wanted to speak from a parent who has loved and lost a very well managed diabetic child.
Debbie, thank you so much for your reply, and I apologize for not seeing your comment until now. I am so sorry for your loss. I agree that there is a huge problem with the fact that the statistics are misrepresented, for both Type 1 and Type 2, to the point that it doesn’t make sense. It’s unfair because if the statistics were represented accurately, we might see more funding for Type 1 research, which could lead to a cure sooner.
Sorry for you loss. How old was your daughter? At times I tell myself that if it is meant to be for my Husand to die from a low verse losing his eye sight, going on dialysis, losing limbs, toes/fingers, car then maybe that what is meant to be.