Hi, my husband has Type1 diabetes. He was diagnosed in his 20s. He has a DEXCOM6. He has multiple lows every single day. He can’t seem to manage it. Often his lows are below 50. Four or five years ago he got in a major accident due to being low so he is not supposed to drive below 85. He doesn’t always wake up to the DEXCOM low alarm so his blood sugars fall while he is sleeping. He doesn’t seem to have a good sense (like he doesn’t seem to have physical signs) that he is low most of the time. We have a doctor and a diabetes health nurse who have tried working with him. He still is getting incredibly low and low often. Frankly the severe lows where he passes out (and paramedics need to come) or he is almost passed out and I use the Glucagon pen, are preferable to lows where he is so out of it he doesn’t know he is screaming horrible things for all the neighbors to hear or he is destroying our home (he literally tore doors off the walls and otherwise damaged the doors). My son is 18 but is somewhat afraid to be around my husband because of the total unpredictability of this. I am really REALLY exhausted from having to deal with all of these lows. When he is low he eats 15 or more Skittles or he drinks a soda if he thinks of it but usually it is me telling him to drink a soda. Sorry this is sort of rambly. I wanted to present a full picture.
hello @Anna1973 Carley welcome to Type One Nation. In my opinion, it is really very hard to make someone take care of themselves. I have no idea what your history is, but I can certainly testify that you usually can’t force anyone to change.
If he won’t do anything, you have to ask yourself if you are willing to live like this, and then you have to do what’s best for you, sometimes, even if that means some uncomfortable conclusion.
If he is willing to do something different, the obvious thing is to get a Tslim insulin pump with Control or Basal IQ. this pump allows accurate basal rates, and the Basal IQ and Control IQ both cut insulin in the event the CGM reads low blood sugar. He won’t have to wake up, the pump will just do it.
Lows are very serious. I hope the way this begins is a nice discussion about how very dangerous it is and how it would be great to make some positive changes for the sake and harmony of the family. I hope he decides to do something about this.
Hi Joe,
Thank you for your reply. I wasn’t aware that a pump could control that. That is very good to know. I will ask the diabetic health nurse about that. Thank you.
Carley
Hi @Anna1973. So glad you wrote in, and thank you for sharing your concerns about your husband. Hypoglycemic unawareness is the inability to sense the symptoms of low blood sugar, and it’s not uncommon in those who have had it a long time. As you’ve discovered, having the Dexcom is one thing; but it is simply the tool to let you know where your numbers are so you can take whatever action is necessary. I’ve read a few posts about individuals who don’t hear their CGM alerts. I can be a hard sleeper, and sometimes my husband wakes me up when mine is sounding. There is a vibration option to try if he’s not using it, and some people have found creative ways to augment the alarm, such as putting their receiver in a tin cup.
Hopefully with stringent record keeping your diabetes team will be able to keep his numbers from going to extremes. Someone mentioned insulin pumps, and they do give you the ability to tweak your background insulin and dose for carbs more precisely than with shots. I’m in the middle of reading “Think Like a Pancreas,” and while I use a pump and only short acting insulin, and have never had an issue with a particular type or brand, some people react very differently (no pun intended) to one versus another. That’s something your doctor should check into.
Your husband is blessed to have you. I hope he’s able and willing to get things under control, for your sake as well as his own. Keep us posted.
@Anna1973 Hi Carley and welcome to the TypeOneNation Forum. You have come to the right place for suggestions from people living with diabetes and from those who live with and assist people living with diabetes; now with me jumping in, you will be hearing from three people who between them have lived with diabetes for about 150 years. Call on us for suggestions - we will respond as best we can; diabetes management can be very complicated.
I agree with all written so far and will add my two-cents worth; 'm not a licensed medical adviser but rather someone who has been in conditions similar to your husband’s - like one of the times EMS medics had to awaken me from a blood sugar reading 10 mg/dl. You didn’t mention your husband’s insulin protocol so I’ll assume that he is using a background insulin once or twice a day plus a fast or rapid-acting insulin at meals to counteract carbohydrates eaten.
My first assumption, which the doctor and nurse should recognize is that he is taking too much background insulin - or the timing is off.
Second, his meal-time insulin, his insulin to carbohydrate ratios need to be adjusted; combine this with a re-look at carb counting.
Third, he needs to review the arithmetic he uses to calculate meal-time bolus doses - along with his method for making corrections to these doses if his glucose level is lower than a set target.
Fourth option: all the above.
@Joe suggested the Tandem t-Slim x2 insulin pump that together with the DexCom G6 monitor that when paired together can be used for the Control IQ AIDs [Automated Insulin Delivery System] which I’m currently using and find it outstanding, and Dorie @wadawabbit is in-process of upgrading her pump to this algorithm. The benefits of this new system have helped me immensely - eliminating almost all my “lows”, but a major caution I will offer is that it still REQUIRES that a person with diabetes understand her/his body and is able to successfully manage diabetes. It is not a miracle worker.
Dexcom G6 has a SHARE feature if he reads the G6 via a smart phone (kinow iPhone works) and can sent to you. You and he can set alarm levels so you get a ‘heads up’ ahead of his hypoglycemic crashes. I am not sure if this will help but did not see anyone else put this out.
Keep the T1N informed. We are here for you.
Hi again @Anna1973. I’m about to touch on a very sensitive subject here and I hope you won’t hate me for it and will please forgive me. But while hypoglycemic unawareness (let’s call it “HU” to save on typing) is very real, with CGM technology it should be manageable. Most people don’t want to go too low - in fact fear it; although some are willing to take some risks for the she of very tight control. But given that your husband has had one serious accident, and has engaged in some very destructive not to mention frightening behavior, I wonder if something else may not be going on? Diabetes can cause people to become depressed, or simply need or want counseling to help them adjust, adapt, accept - I’m not sure of the correct word, but hopefully you get what I’m trying to convey. It may be that he is perhaps even unconsciously unwilling to care for himself. Many years ago - long before CGMs were in the picture - I worked with a woman who said her husband would let himself pass out rather than fix himself a meal or snack. He was bound and determined that she was going to do it for him, which in her case (not necessarily yours) sounded like some sort of emotional blackmail.
Again, please forgive me. I realize I’m stepping on some very sensitive toes. But on the forum we are here to share encouragement, thoughts and ideas and sometimes things do hit home and help the original writer with whatever is going on. If that’s not it then I apologize and ask forgiveness. But if there is even a possibility that counseling could help, I encourage you as a family to find it. Lots of people on the forum are living long, full, satisfying lives with many years of diabetes. Your husband and your family can too.
Excellent point from @987jaj. Whether you are on a pump or not, in addition to giving an alarm when you (or your loved one) are low (or high), Dexcom can alert you that your numbers are falling - or rising, as the case may be. That can give you - and ideally your husband - a head start on treating before things reach a crisis.
And if I can share a few tips (as if you could stop me - I’m a frequent commenter here, right @Dennis😊?). I’m not a medical professional, but someone who had lived with diabetes for over 50 years so you/your husband might consider :
- Counseling (as I mentioned earlier).
- A refresher course in diabetes and management. Ironic as it sounds, sometimes you can do something for such a long time, you forget the details, then start veering off course.
- I personally would be concerned about driving as low as 85 given the history you’ve shared. If he’s not sensing lows and missing or perhaps ignoring his alerts, that doesn’t give him much of a cushion to stop and treat. It may be his doctor is trying to keep him in tight control, but for some people that can be dangerous, at least if they are not in reasonable control to begin with. If that’s what he is aiming for, if it were me I would start with a BG target a bit higher, then try stepping down gradually, fit the she of safety. I would discuss the number with my doctor.
- If his health care team has been working for a while and you’re not seeing any results you might consider seeing another doctor. True, some patients present particular challenges, whatever their medical condition. But after a while it can be good to get a fresh perspective - at least a second opinion. His current doctor might not like it, but health is first priority - but doctor’s ego; on the other hand, s/he may be glad or even secretly relieved.
- Read “Think Like a Pancreas.” I think the most recent edition is from back in 2012 BUT I just checked Amazon and an etextbook week be coming out in May of this year (!).
Hello! I’m a type 1 also, and I get multiple lows daily. Usually around 40-50 mg/dL . What has seemed to work for me a little bit is to reduce my long acting insulin, or at least halve it.
Yes, we are using the share feature, thank you. He only got the DEXCOM G6 about 2 months ago. Even still, he has had a lot of lows since getting it .
Hi I mean the right pump can cut the delivery of insulin and prevent a low. A CGM will only tell you that you are low. Cheers!
Thank you. I appreciate you going out there an telling me the story of the other wife, etc. That is very interesting about it possibly being depression or something like that. He has high anxiety for certain, but I don’t think he is depressed. I am not a counselor though. Anyhow, thank you for the food for thought.
Hi, thank you for your response. Yes, we did this with the diabetic nurse counselor at our last appontment. He didn’t have the food diary done correctly though so she wanted him to do it over for our next appointment. He had just written down things like Casserole 25g rather than how much he had and more specifically what the item was. So he is doing that now and then we will hopefully have an appointment in the next few weeks.
There are some very good apps to use for tracking. I use Mynetdiary, which has an extensive nutrition list for canned, packaged, and restaurant menu items; snacks; and of course fresh foods. I find it very helpful.
Carley @Anna1973, that sounds good, a good “new beginning” and it sounds as if his nurse has identified one of his “weaknesses” on which to begin working.
Portion size and carbohydrate counting are intertwined. I can’t count the number of times over the years when my eyes would easily forget the portion size for which I was counting carbohydrates. I now keep a “Calorie King” book in the drawer behind where I usually sit when eating - use it especially when I’m served something I don’t eat often. Also, several years ago, a new digital scale showed up ion the kitchen counter [yes, my wife’s idea] where I most often fix my meals or fill my plate.
Hey there, there has been a lot of really good replies from everyone. I’m not a professional educator, just a guy with Type 1 for the past 5 years, so maybe this could be helpful. I want to reinforce what many have said about the background (basal) insulin being too high. Intermittent fasting can help diagnose that problem. I noticed you said casserole 25g for example… Just another idea, but if he’s eating a meal with high fat, he may be going low because the fat in the meal is causing a delay of the body getting the carbs. When that happens, the insulin can beat the carbs and cause a low followed by a high later on. Check out UCSF’s website on diabetes education, its the hospital I go to and their goal is to empower the patient to make insulin dosage decisions rather than rely on a doctor or nurse. https://dtc.ucsf.edu/