My two year old daughter was recently diagnosed with type 1 diabetes. About three weeks after diagnosis, her insulin requirements were reduced to just 1 unit of long-acting each morning (no meal coverage.) We are now exactly two months into diagnosis and she is completely off insulin due to middle of the night lows. It’s been eight days since her last dose of long-acting, but she is still going below 70 in the middle of the night sometimes. Has anyone else experienced this? Why would she still be experiencing hypoglycemia without the exogenous insulin? Her average blood sugar according to dexcom is 116 and she has relatively few high readings (always below 200) but they are definitely still happening. We’ve tried increasing the size of her bedtime snack, but it seems like a spike actually increases the likelihood that she’ll be low by or before morning. Looking forward to any thoughts and ideas.
Yes this is common, you need to google “diabetes honeymoon phase”: e.g. https://www.diabetes.co.uk/blood-glucose/honeymoon-phase.html
Keep in close touch with her doctors, they should have experience to guide you with this. Forums can be helpful, but we don’t know all the relevant info so advice can be misleading. For example, what types of insulin is she taking, dosage amounts, timing, how are you adjusting food and insulin dose, are you diluting insulin, lots to consider that we don’t know.
If I understand what you wrote, and she is currently taking no insulin of any type every day, then her BG though “low” (below 70) should not be of concern (since it is not being caused by insulin or other medication), so should just be reported and discussed with doctors.
Thank you for your reply! Yes, I know about the partial remission period. But, my understanding was that people experience more frequent hypoglycemia during the honeymoon phase because their own endogenous insulin combined with exogenous supplemental insulin would cause low blood sugar. So, I’m unsure why her own naturally produced insulin (from a pancreas that is only partially functional at this point) would be causing her to have low blood sugar.
I agree, it is surprising to me. But you didn’t say whether these are CGM or blood tests, both of which have margins of error (CGM clearly more so). If her BG is indeed low, then I assume this is part of the dysfunction of a pancreas under attack. Honeymoon only lasts so long, so this won’t persist.
The good news is that it should not be necessary to treat with glucose these “lows” that occur when no insulin is being taken (unless of course your doctor is aware of something I am not). And as long as actual BG not going below low 60’s, probably not even noticeable to your daughter.
How low is her BG going at night? Are you chrcking the CGM readings with fingersticks? FYI Pressure on the CGM during sleep can produce false BG drops.
Hi @Eaden,
Welcome to TuD. I am very sorry to hear about your daughter. I know this seems like a very difficult thing for her, and it takes some time to get adjusted. But I assure you that in the long run, she will be absolutely fine. She will be able to do whatever she wants in life. I was diagnosed when I was 6. It hasn’t stopped me from doing anything.
About your question…
A lot of people are not fully aware of the “other” side of diabetes. In general, for people with Type 1, it isn’t just the insulin side of things with our pancreas (the beta cells), but also the glucagon side of things with our pancreas (the alpha cells).
In a non-diabetic, there is a constant interaction between insulin and glucagon. A person’s blood glucose (BG) level is controlled not just by insulin! Both glucagon and insulin are constantly being released to keep the number level.
If a person’s BG goes up, insulin allows the glucose to be taken up by the cells and used for energy.
If a person’s BG goes down, glucagon causes the liver to release stored glucose, and causes the body to create glucose from non-carb sources.
People sometimes just think of diabetes as it relates to insulin. They don’t really think about the fact that the “other” side (the alpha cells) are also affected. (These are not really sides of the pancreas, as in left and right. I am just using the term “side” to help visualize it.)
In your daughter’s case, during the honeymoon phase, her body is starting to release insulin again. But the alpha cells are not responding, so she is going low.
Does all of that make sense?
I suggest a slow release snack before bed until her beta cells (the insulin producing cells) start to calm down again. Things like peanut butter crackers (using unsweetened peanut butter).
Please feel free to ask questions. That’s why we are here.
I’m sorry to hear that your family as well has encountered this unasked challenge. Know that you aren’t alone in this.
Regarding early disease process glucose variability, I’ll just chime in here as well: according to my understanding, especially during the initial period of the presumed autoimmune dysfunction, the stressed islet cells (beta cells) can go off the rails and release additional, uncalled-for insulin. Of course this isn’t exogenous insulin but especially in the absence of counter-regulatory hormones (like glucagon) this can drive one’s blood glucose downward.
Other hormones also get sucked into the argument, cortisol and growth hormone for starters. And thyroid hormone. And potentially epinephrine. These can increase the uptake of insulin in the person with Type 1 diabetes. (But sometimes lead to insulin resistance, which can induce more endogenous insulin release). All of these can be variably active especially during periods of growth!
A lot of this settles down, usually, given sufficient time. But it’s complicated and part of the reason that we’ve not been able to cure T1DM. Yet (but give them five years, I keep hearing).
Oh, that does make sense! Thank you for taking the time to explain that to me. I will try that tonight.
Ok, I wasn’t even considering the glucagon. I’ve got more reading to do. Thank you!
She isn’t going below 65 because I wake up and give her a snack as soon as the alarm goes off. I do check with a finger stick each time and they’re within a few points of each other.
Likely she has reactive hypoglycemia , when her sugar goes high her pancreas tries to compensate and it over does it. This happened to me for a year after diagnosis. It’s waiting for her remaining islet cells to die off. Then her sugars will become more predictable
The simplest thing to do would be change what you give her for a bedtime snack.
Understand that when sleeping at night she is fasting but her body is still active. Her brain runs entirely from glucose and uses 25 of total daily intake. Hypo is the reaction of her brain to being starved .
Too often what people with diabetes take for bedtime snacks is something intended to raise their blood sugar, rather than to provide a continuous source of energy.
The latter requirement is best met by a combination of fiber and protein, both of which are lacking from most childrens ( and most adults) diets. Fiber slows and evens out digestion through the bowel and retains water so protein can be broken down evenly into carbs and amino acids throughout the night.
Two of the best sources of both protein and fiber are cheap and readily available -;white beans and green lentils. Both can be made palatable and digestible by cooking them (the beans with a little baking soda to eliminate problems from gas.) Cook them until tender (or to mush if desired.) . They have little flavor but can be flavored and colored with anything the child enjoys so long as the added carb content is less than 25 percent of the whole.
Eaden, good info shared here. And I remembered 15-20 years ago there were Extend Bars, or one called Night Bite. These bars were made with corn starch which slowed down the absorbtion of the carbohydrate. So to prevent the quick rise in sugar which the pancreas will try to prevent - like you have already seen. If you are still wanting to give a snack (I’m wondering what her sugars will do if you leave her with the 65 - which used to be considered a usual fasting sugar of 60 to 100). You can look up recipes for cornstarch protein snacks on line. Good luck. Be sure to go to a family diabetes camp like DYF - Diabetes Youth Families, where you will find a community of others plus experienced medical people to learn & share with.