Dead in Bed Syndrome

[Wendy's Sister]

Recently my brother in law died, he was a Type 1 diabetic since about 14 years of age.  His 3 sons and wife are devastated, as are we.



We recently have heard about something called the "Dead in Bed Syndrome", which seems to occur with Type 1 diabetics in that they seem to lose the ability to recognize the sypmtoms of hypoglycemia.  



The night of his death, he ate a snack because his sugars were diving during the night.  About an hour later, his wife went to bed and found him taking his last breaths.  She tried to revive him with some Glucagon (and CPR) but was not able to get him back.  This was not the first time that he had had a severe hypglycemic reaction during the night.



We are totally devastated and have heard that for some people, there seems to be a relationship between the "new" genetically engineered insulins (ie:  Humun insulins) and the severe highs and lows in glucose levels.  These problems were not happening with my brother in law when he was on the animal based insulin.  



We are wondering if there is a correlation and after reading alot of these posts, I have been wondering if perhaps it is the insulin itself that is causing some of the problems.  



Apparently the drug companies want to stop making animal based insulins but perhaps animal based insulins should be available to people who aren't able to tolerate the genetically engineered insulins, or at the very least, more research should be done to determine if the insulin itself is at fault.



Do you have any info about "Dead in Bed Syndome"?



Thank you

[JDRF-Team-ES]

Please accept my sincere condolences on the loss of your brother-in-law.  I am not a physician and I am not up on all the research, so I can't adequately answer your question about the human insulins causing these severe lows.  I have never heard of the "Dead in Bed Syndrome", but that doesn't mean it does not exist.  I know that the human insulins do help people to keep their sugars in tighter control and obviously there is a risk to such tight control since blood sugars can drop so quickly.  I think the question you ask is a good one and perhaps someone will do this research.



As a Diabetic since age 13, your letter reminds me, once again, how scary diabetes can be, even when you are doing everything you can to take care of yourself.  Even with all the medical advances that have been made in the treatment of diabetes, there is still no cure and diabetes can be devastating.  Please extend my heartfelt sympathy to the wife and children of your brother-in-law. If I hear of any other research or information related to your question, I will pass it on.

ES

[Wendy's Sister]

Thank you for your response.



I am posting a couple of sites that talk about the "Dead in Bed Syndrome".  



It seems that for some people with Juvenile Diabetes, there is problems related to the human insulins, for others, there doesn't seem to be these same issues.  It does however, make it very important to have the animal based insulins available so that people have a choice in treatment.  My research has also indicated that Eli Lilly, the makers of Humulin Insulin are going to (or have) stopped producing the Beef and Pork Insulin which is very unfortunate as it takes away that choice.



The coroner's report stated that there were some changes in my brother in laws arteries related to the diabetes, but that he had not had a heart attack.  The cause of death was listed as "complications from diabetes".  



Here are the links.



http://www.iddtinternational.org/newsletters/newsletteroct2002.htm



http://www.diabetes.org.uk/news/july00/animal.htm



http://www.diabetes.org.uk/news/july00/animal.doc



Or just type "Dead in Bed" into your search engine and this will lead you to some of these links.



I would appreciate hearing from anyone if they have additional information or research about this as it is leaving us very unsettled knowing that perhaps his death could have been prevented if he had been on the animal insulin.

[JDRF-Team-ES]

Thank you for this information.  It may help someone else avoid the suffering your family is going through.

Es

[JDRF Team SGG]

It is known that many diabetics, particularly ones who are tightly controlled, can lose their warning symptoms of hypoglycemia, but i have never heard this blamed on any particular type of insuln. A number of studies have been done on this issue, and one released a few years ago linked the problem to frequency of hypoglycemic episodes and the body's emergency response to them when they are not fixed quickly. The study I read was on such diabetics whose warning symptoms of hypoglycemia had vanished in time. I won't go into all the medical reasons that those warning symptoms go away, but it has nothing to do with any particular type of insulin, human or animal in origin. It is rooted in the body's emergency response to any severe PROLONGED low. When a person gets low and sends signals for the person to get some carbs into the body to fuel the brain, if this doesn't happen quickly, the body goes to its emergency plan: it sends for emergency sugars stored in the liver. When this happens and then the same person has ANOTHER low fairly soon afterwards, the brain still detects residues of these emergency sugars that are present and so does not send out warnings that it needs carbs, for it thinks it HAS carbs. The study also tested the ability of a diabetic to regain those warning symptoms, and two things were suggested:



1. if low, the person should take the quickest possible carb to digest rather than eating a snack that takes a long time to get digested, This resolves the lack of carbs in the system BEFORE the body has a chance to send out for emergency liver stores of sugar. So this means drink the juice when low rather than eating the slower-digested sandwich or crackers. I don't beleive most diabetics are aware of this and probably go for the slower-digesting snack instead of the quick fix.



2. If warning symptoms do seem to fade at certain times during a diabetic's life, the key to regaining them is to raise glucose levels just enough for a period of two weeks to avoid having any lows at ALL during that time. This time frame allows the body to rid itself of all the emergency sugars that have been released during lows so the brain can recognize when it is low again.



While I am so sorry that your brother didn't read this study (I read it the first time in my hometown newspaper as an AP Wire article), I feel if is important to share this information with all diabetics who take insulin. While these two suggestions are extremely simple, they are things that we don't tend to do if we don't know their importance. Having BEEN one of those folks whose warnings about hypoglycemia had disappeared, I can personally attest to the success of using these suggestions to bring the warnings back. They do work, for I am now accutely conscious of any lows before I hit danger levels. I could very well have been in the same situation as your brother had I not read this article and taken its suggestions to heart. Now, instead of simply eating my meal if I am low when I test before a meal, I first get the carb fix going quickly by drinking a small amount of juice, and THEN eat my meal. Just a small change in habit, but one that could save a life.

[jdrf team dm]

Dear Wendy's Sister,



I am so vey sorry for your loss. I do understand your need to have all of the questions regarding his death answered. It is also very helpful that others may learn something about "Dead in Bed Syndrome". I had heard the term, but did not know much more about it. I do thank you for the information.



There is a link through www.childrenwithdiabetes.com that may give you additional information. It is http://www.childrenwithdiabetes.com/d_0n_g00.htm.



I wish the best for your family.



dm

[JDRF-Team-LRS]

I'm so sorry for your sudden and devastating loss.



I have heard about the syndrome and it's quite frightening.  The newer insulins have been terriific for many diabetics because they start working quickly -- that can make an erroneous dose even more dangerous, however.  I have also read from pals on other boards about the scary times when they accidentally took their short-acting insulin instead of their longacting insulin.  



Many have developed tips & tricks to minimize that likelihood.  Some put elastic bands around one vial so it feels different; this is especially important for diabetics who've lost some eyesight.  Others store their short-acting and long-acting vials in completely separate locations (bedroom for long acting; kitchen for short acting).



Mixing up our insulins can be deadly because most folks take a significantly larger dose of the long-acting insulin in one shot than we do of the short-acting insulin.  If we're not diligent and accidentally take, say 20 units of rapid acting insulin instead of 20 units of our "basal" insulin the result is deadly.



We're all human and busy and occasinally distract.  Perhaps there's no failsafe way to ensure we don't make a mistake like that.  This is one of the many reasons we need a CURE for this disease.  



I don't have the words to comfort you in your loss.  I do hope that you & your family can draw strength from one another to move forward through the pain and anger.  Your brother in law was clearly a beloved and loving fellow and his good works and ideas can live on through you all.  Take good care of you ... and each other.

[Wendy's Sister]

Thank you all for your posts.

[Wendy's Sister]

I did call Eli Lilly today and asked them about their production of animal based insulins.  They are still, at this point, producing both a short acting and a long acting pork insulin.  The representative did say that they do review their product line on an ongoing basis and it is possible that this line could be discontinued but there is not plans for this at present.



Another pharmaceutical company, which the representative did not name, has discontinued it's production of animal insulins.



At least their does still remain a choice for people who just cannot tolerate the newer insulins.  This is such a relief as my husband's family(father, now deceased, brother, now deceased, cousin, cousin's son) has such a strong history of diabetes and his cousins had all been told that animal insulin was no longer available.



Again, thank you for your posts and support and a great forum for education.

[Teal49]

Just in the answers and comments to this important question, you see more diabetes savvy people than with the head of Care Management Dept at our insurance company. It amazes me that people so ignorant of type 1 diabetes or people with type 2 diabetes-on insulin... are the people making decisions on whether or not a diabetic patient can get a CGM-real time continuous glucose monitor. The head of Care Management recently said (paraphrasing) that a blood sugar of 40 would not render anyone unconscious. There was also a reference to her knowledge of treating people with diabetes in bad lows and "none of them died". That makes 2 of the most ignorant comments I have ever heard since my son was diagnosed over 10 years ago with type 1. The first comment regarding a bg of 40, is she thinking that they are just hovering at that sugar, not that the sugar can be plummeting? Is she thinking of the margin of error that a glucometer can have? How low is the sugar really? And my son has made the error with grabbing the wrong insulin, gave the injection of his fast acting...at the amount of insulin that was supposed to be slow acting. If we had left, been on our way to my mother's... when my son figured out he was plummeting...it would have been too fast for enough of a response to help him. It took at trip to the ER, an iv of dextrose, and he had drank fast sugars/juices all the way from home to the ER and could not drink anything more because he was full. My son sleeps through his low sugars, some as low as 41--3  of them in the 40's in the last 3 weeks... I am getting off of the subject but seriously... how can medical professionals know so little about a disease that is so prevalent??? When is the movement to educate America about diabetes going to happen??? When will our world become more "diabetes friendly" and understanding? How can you assist another person during an insulin reaction/low blood sugar if you don't even know what you are seeing and what you are supposed to do? Your point about the fast sugars instead of slower absorbing carbohydrates when first treating a low sugar is absolutely true. It's not the candy bar the diabetic needs, it's the juice or soda with sugar in them. Anyway, thanks for bringing up this subject... and for all of the intelligent comments made regarding the subject of diabetes. How helpful... maybe the insurance company and medical providers should be reading these!