50% Basal Rate Decrease in 3 weeks

Important stats:
Female - 12
Diagnosed T1D 4 years ago
Levemir: currently 15/16 units (was 31)
Humalog: 1 unit for every 80 points above 120, 1 unit for every 15 carbs

I am at a complete loss to say the least. As little as 5 weeks ago, we were battling all types of high blood sugars. Arrive at school, high blood sugar, correct, repeat. The sugar numbers would come down, maybe a little low, but would soon stabilize, maybe with a little sugar.

Then November 1st hit. High first thing in the morning, correct. Off to class she goes. Lunch comes, fairly normal, correct then goes to class. 7th period happens, begin episode 1. She lays her head on desk, teacher thinks it’s normal. At the end of class, she is unable to become fully alert. She drinks juice and has gel, repeats several times, sugar FINALLY hits 77. Mom brings her home and we eat dinner. After 180 carbs altogether, she is at 160. An hour later, she rises to 302.

One week later at school, episode 2: Dad checks at home and corrects. Blood sugar high, gives 10 units. An hour and a half later, still high and the school nurse calls endo, they request 12 more units. Lot of insulin, right?! Yes, but the events following are mind-boggling. Lunch comes, I personally instruct the school nurse on lunch. I limit the insulin given. 7th period comes around. Teacher checks on her, then calls for the nurse. Nurse checks and BG is 26. EMS is called, IV is given. BG rises to over 100, then BG continues to drop. Mom gets soda for her. She drinks it and eats dinner and finally levels off.

After monitoring her for the next 4 days like a hawk, Levemir is decreased by 33% by the time it is all said and done, from 31 units to 22 units.

Now, yesterday, 3rd episode: CGM reads at 200, goes to school. At lunch, BG is 191. Eats 50-something carbs and is corrected by 5 units (insulin in bag at nurse’s office). Nearly immediately, insulin kicks in, number is still in good range. About an hour or so later, she goes to the nurse with a headache. CGM showing 77 and straight down. Eats gummy glucose tabs. She loses consciousness, glucagon administered, EMS arrives, BG at 15. IV in, pushing and pulling D-10, starts to come up, D-10 continued. EMS transports. About 2 bags of d-10 (unsure of size), 3 powerades (21g), 4 juices (assuming 15g each), cheesesticks and crackers, coming up then falling. This trend continues til Levemir wears off at 12:30 am. Thankfully, she pulled through. A tough journey, but she is hear with us today.

Keep in mind, insulin was doses by the nurse,not her. We’ve already explored other possibilities, but this one seems to be accurate based on what we have been going through.

Has anyone dealt with anything similar?
What happened in your case?
What was the result?
Any tips or pointers?
Did it continue? If so, for how long?
Was there another diagnosis or something that came as a result?
Any help would be appreciated! Thanks in advance!

This is really very hard @bcfbrian7800 Brian. First of all welcome to TypeOneNation and the forum.

There are some rules of thumb but there are no absolutes. Everyone is a little different here.

That said her overall numbers seem off: very little basal insulin, very sensitive 1 unit drops her 80 mg/dl, but the carb ratio, the amount of units per carb seems very aggressive given the other 2 data points. Regardless the profound drop in bs in the afternoon is very scary and not easily explained.

I urge you to consult an endocrinologist because there are interfering issues such as problems with adrenaline and liver problems that need to be checked and ruled out.

Is it possible she is not eating at lunch and with all that insulin on board from the morning it’s causing a huge crash? Is she doing something such as physical exercise right after lunch. Even walking with tat much insulin on board would cause me to drop to zero.

I’d eat that lunch without insulin, honestly and stare at that CGM. At least for the next lunch time.

I hope you find answers very soon Brian.

1 Like

Thinking out loud now. Kids, especially in the 12 year old variety, may eat sweets and not tell you. Then the weird high gets corrected. Maybe sometimes it gets stacked such as the 10 in the morning followed by 12 at school (the second correction, unless it was 4 full hour later, adds to the first correction and is referred to as “stacking insulin”). Anyway, if she is eating anything it can make you nuts with high blood sugar that seems stubborn and “will not come down”. Just a random thought.

Thank you, Joe. We are in the hospital now, trying to get it all figured out, but I am less than impressed with their methods of figuring it out. Episode 3 happened after eating lunch with the nurse and the nurse observing her insulin dispensing. Yes, I agree about the stacking. I was very upset the endocrine nurse advised the stacking (yes, the endocrine nurse). Physical exercise was minimal. Walking, yes. Physical exercise, no. The need to drop basal by 15 units over 3 weeks is absolutely crazy, but absolutely necessary. She reacts horribly to carbs, at times, and rules on how to correct seem to change, even when she is closely monitored on what she eats. Thank you for your response. Hopefully, we will get out of the hospital tomorrow.

Lets take a look at episode 2. She has 22 units in her. Each unit is good for 80 pts. That would cover 1760 pts. Was there a typo in your post? If not, i see nothing mind boggling. Am i missing something here?

22 units of long acting basal insulin.

Also, dont put too much faith in that CGM’s reading, especially when your struggling to get her straight. I would be using test strips during these times. Most people use cgm to see how sugar trending by reviewing the arrows. I never trust my cgm when doing a correction. They are sometimes very inaccurate and always a solid 15 minutes behind real life.

Jason, im not sure, thats not how episode two reads. But if they are pumping long acting in at lunch with an additional 22 units, why? Thats humalogs job

@marinekeeper sorry, read the top portion wrong. It doesn’t take a genius to figure out the kid is being pumped full of excess insulin. 10 units for a high is crazy when 1 unit brings the BG down 100 points on average. @bcfbrian7800 how high was the BG when the nurse gave 10 units and called for 12 more?

Yes, 22 units was overly excessive. There was no way I would have followed any orders on that one. I think there was some obvious miscommunication on that one.

We use both finger pricks and CGM. CGM only for trends, as a result of our issues. No dosing, but it will alert of patterns and/or lows. The nurse at the school, at max, checks her sugars 3 times, even after these incidents. Except for extreme rises and falls, it has been within 20 points every time, which is pretty remarkable, actually.

I gave the 10 units (not the nurse) and made sure the nurse knew I gave her 10 units. She then called endo and they told her 12 more, which is WAY out of line. And correct, it is 22 total of fast acting.

The 1 unit for 80 was something put in place after episode 1. It had been 1 unit for 40 before then because we were battling highs.

Brian, Joe, and Jason @bcfbrian7800, @joe, @Jason1;

I am going to comment on this thread without specifically commenting about Brian’s daughter’s situation - she is not “my patient,” and I am just a retired Ph.D., not an M.D. (But having had T1D for 62+ years, and having done my dissertation in diabetes management, I do have a “few” insights.)

As Joe indicated above, everyone responds to insulin differently. I will use my own experience as an example - what you’ll see in this is that “long-acting” insulin does not always “perform” the way the published dose-response curves suggest. If you want to “relate” my example to Brian’s daughter you are welcome to do so - I am not saying that it applies.

Early in my years of treatment for T1D I was tried on NPH insulin - the preferred “intermediate-action” insulin at the time. NPH would not lower my blood glucose level at all, no matter how much I was given. So, after many weeks/months of attempts to manage my blood glucose levels with NPH I was switched to Lente insulin. Lente would actually lower my blood glucose levels so I stayed on it for several years.

Over the years (until I was in my teens) my several pediatricians would try to switch me back to NPH. It absolutely failed to affect my blood glucose levels, so, after several weeks of feeling horrible, my pediatrician(s) would switch me back to Lente and things would stabilize. So, I was shown to be an “outlier” in that I did not respond to the most-often-used intermediate-action insulin.

The concept of “split-doses” came along when I was a young adult. And then came “multiple-daily-injections.” At first my Lente dose was split to about 60% in the morning and 40% in the evening - things got a little better. But my blood glucose levels would always want to run high in the morning hours (here is where you shout at the top of your lungs, “Early-Morning-Phenomenon!” - that’s coming in a minute). A well-respected endocrinologist eventually wanted to try me on MDI, including a split dose of Ultra-Lente with Regular insulin to cover meals. What happened? My blood glucose levels would still run up into the 300mg/dl-to-400mg/dl range until about 11:00 in the morning and then it would often crash, and I do mean CRASH, to <30mg/dl. Now remember, this is prior to the time of the “GlucoMeter,” so the only way to check blood glucose levels was through venipuncture and waiting 6 hours for the lab to report the results - it just wasn’t ever done to evaluate my morning crashes.

I “limped along” with the above dosing strategy, always trying to minimize the 11:00am “crash,” until my physician said, “Let’s try this new Lantus insulin.” It was used to replace the Ultra-Lente in my MDI routine and the 11:00am “crashes” became life-threatening. We continued to adjust the doses of Lantus that I took in both the morning and evening but could never arrive at a succesful balance - either my blood glucose levels would run too high in the late morning, or I would crash like a paper airplane.

Okay, repeat after me, “Early Morning Phenomenon” combined with an atypical response to intermediate-action/ long-acting insulin.

I eventually went on an insulin pump several years ago, and, with my physician watching over my shoulder, I arrived at a dose-response ratio of 1 unit of Humalog per 30 grams of carbohydrates. My “correction bolus” ratio is similar - 1 unit per 100mg/dl when my blood glucose level is running high.

Here’s the “kicker” - my basal through the night is .35 units/hour. But at 7:00am it steps up dramatically to 1.35 units/hour and then cuts back to .65 units per/hour at 10:00am. I take 1 unit of Humalog to cover breakfast unless I simply eat too much - then “all bets are off.”

What’s going on here? It’s that early morning phenomenon when my body “pumps tons” of corticosteroids into my system, causing my blood glucose level to rise like crazy if I eat anything at all. If I don’t eat anything for breakfast (and that is seldom ever the case) my blood glucose level may rise modestly if at all). But, this early morning phenomenon is not “reliable” - most days it happens, but some days it doesn’t and then I have to “suspend” my pump or set a lower “temporary basal.”

By staying on my toes and adjusting my basal as needed during the morning hours I can manage a HbA1C in the 6’s. And that’s without “major” hypoglycemic episodes.

The moral to this story? The biggest challenge for me is the early morning phenomenon and the way it ends abruptly. It simply cannot be managed adequately and reliably using intermediate-action/long-acting insulin, especially when I use a “reactive” approach (i.e., “Oh, it’s 10:00am and my blood glucose level is high - I need to take “a bunch” of insulin” - and CRASH!). I have to treat the early morning phenomenon “before it starts” and then dial back my basal if the early morning phenomenon “takes a holiday.”

Brian, what I read in your post, if applied to me, is way too much insulin taken at the wrong times for the wrong reasons. Now, you can read into this what you want to.

I hope things get better for your daughter very quickly!

Bill

@bcfbrian7800 Hi Brian, and welcome to this TypeOneNation Forum. You have already received many suggestions here, so I’ll limit mine. I strongly agree with what Bill @BillHavins [we were both diagnosed at about the same time and have experimented with treatments that did not always work for us] suggests and add my words "that we are not robots that follow what is written in an User Manual. Insulin-stacking might be the culprit in your daughter’s case.

A good endocrinologist and/or Certified Diabetes Educator [a CDE] could help you determine your daughter’s proper insulin-to-carbohydrate ratios for the different timeS of day; my I:C ratios vary from 1:9 to 1:18 [at supper-time I only need 1 unit of insulin for 18 grams of carbohydrate whereas at breakfast I need 1 init for every 9 grams of carb - twice as much, in effect. Also, my insulin sensitivity factor / correction rate differs at different times of day.

Depending on the CGM she is wearing, you may be able to monitor and determine how long a period elapses before her BGL [body glucose level] begin to drop after insulin is administrated and also how long it takes before her BGL begins to rise after she begins eating a meal. I’ve bee using the Dexcom G5 and find that its accuracy for me is outstanding and very reliable and use that device almost exclusively for dosing - I’ve used that CGM to learn the delay my body experiences in responding to insulin and acting to the foods I eat. Yes, some type foods begin raising my BGL sooner than others.

Hello all. Thank you for your responses. The hospital and I finally came to a good agreement on the best course of action. Though I know the first two episodes were brought on by extreme doses of fast-acting, this past one should not have had the results it did (BG 191, 54 carbs, dose of 5 units with the result of being 15, unresponsive and taken to the hospital). My daughter takes Levemir as her long-acting insulin. While not usually significant, Levemir does have a period of peak potency in the body. Let me back up for a moment… the last time we saw endo, we raised the Levemir because of the dinner time and night-time BGs. These would have occurred when the Levemir was not at peak. Examining what happened at school these last few weeks, I believe it is clear that the Levemir was “peaking” in the afternoon at school. The reason this wasn’t an issue before is because the Levemir dosage was such lower than it is now. While at the hospital, the Drs. once again tried to do the normal routine of “Lets increase the Levemir some more.” After a lot of thought, the Drs. and I agreed on something I thought several months ago dealing with highs, and that is moving from 1x a day long acting to 2x a day long acting. This way, I am hoping for a couple of results: 1. Hopefully, the minimal, but present “peaks” will occur at different times of the day, without it all “peaking” at the same time, and 2. We can adjust one or the other to compensate for changes at certain times of the day.

Again, please note the use of quotes around “peaks” to mean that I know that Levemir doesn’t have a true peak like Humalog or Novolog.

Brian,

It sound like you feel more comfortable with the changes that have been made in your daughter’s insulin regimen. Great. That’s good to see.

By the way, how does your daughter feel about all of this? I can imagine she feels “pretty hammered,” and has little-to-no faith that these changes are going to solve the problem. After what she has been through that’s understandable. Please let her know that there is an “old guy” who has been through the same “stuff” and is really pulling for her.

Please remember that there are some people who simply do not tolerate the “new” long-acting insulin preparations (e.g., Lantus and Levemir). For some of those people the preparations do “peak.” And when they “peak” they “unload” (i.e., demonstrate a sudden release of insulin into the system). That’s one of the points in my above post - an “atypical” response to intermediate-term/long-acting insulin.

Please be very thoughtful about how short-acting insulin is being used with your daughter. An insulin-to-carbs ratio of 1 unit per 10 grams of carbohydrates would kill me. I’m serious - it would kill me. As above, I noted my insulin to carbs ratio is 1 unit per 30 grams of carbs. With that ratio I would take less than 2 units to cover 54 grams, and that’s assuming a “mildly active” pattern of activity. I don’t think I have ever taken 5 units of Humalog at one time. I don’t think I ever took 5 units of Regular insulin at one time, either.

Keep us posted on how things are going for your daughter. I wish her, and your family, the very best.

Bill

Bill,

Thank you for your response. I will let my daughter know that an “old man” with personal experience is pulling for her. One question I have for you is were you immediately this sensitive to the insulin or did it come over time. At first, Ally was very sensitive with about a max of 7 units for large meals. Later it became obvious we needed more insulin in certain circumstances. It has only been in the last month and a few days that the insulin has been making my daughter’s body very sensitive to her regimen. Thank you for your insights. I had wondered the same thing about the quicker release of Levemir because at times it seems to just dump all at once… We actually had another episode this morning, but caught it in time, so as to avoid a trip to the ER. This happened after going to 2x/day Levemir and administering the 2nd shot this morning. 300 carbs later and we finally read our first 300 number, after barely maintaining for several hours.

Hi Brian @bcfbrian7800, it is good to see that you caught your daughter’s falling BG and saved her from another trip to the ER. Hopefully everything will level out for her.

I was concerned when I read the amount of insulin she had for a meal of 54 grams of carb when her BG was 191; did I read it correctly when you say she took 15 inits of insulin?

My calculations differ; here is how I calculate:

Food Bolus: 54 gm. divided by 15 = 3.6 units
Correction to 120: 191 - 120 = 71 divided by 80 = 0.9 units
Total dose: 3.6 + 0.9 = 4.5 units

Please tell me that I did not understand correctly.

As to sensitivity to insulin, you can expect that your daughter’s sensitivity will fluctuate over time, and often with the change of season. “Change” is the one thing I’ve come to expect - just because I maintain excellent BG levels for a week doesn’t mean I won’t be bouncing all over the place the next day; like today had a severe low, over-treated and next thing I knew I had to dose to get me somewhat close to “in-range”.

Thank you for your post. The correction dose was 5 Units. Insulin to carbs was 1 unit for every 12g of carbs at the time. Her blood sugar reading went down to 15 on the EMS glucometer.

Oh, Brian! What your daughter is experiencing (the repeated “emergency” hypoglycemic episodes) just makes me hurt all over. All of you need some relief from this.

First, please do pay attention to what Dennis posts regarding numbers - he probably has the most complete log of diabetes-related numbers of anyone who is living with T1D. He knows his stuff.

Second, it would be inappropriate for me to suggest how changes should be made in your daughter’s regimen. All I can do is offer examples and insights from my years of working with kids and adults who have (had) T1D, and my own experience. As Dennis implied, a person with T1D slowly-but-surely arrives at a general system that will allow them to manage their diabetes as well as they can. What works for Dennis does not work for me - I’m “upside down” (my regimen emphasizes different things than his out of necessity).

For several summers I ran the “Junior Boys Cabin” at Camp Sweeney in Gainesville, Texas. It was the first summer camp that served childen with T1D. There were 20 “children” in my cabin. Each session lasted three weeks, and there were three sessions each summer. So I “rode herd” on 60 boys between the ages of 6 and 10 each summer, and tried to keep my teen-aged counselors in the cabin “alive” as well (they also had diabetes). Camp Sweeney had three boys’ cabins and three girls’ cabins at the time. Each cabin housed 20 campers plus counselors. What a neat, neat place it was.

I worked at Camp Sweeney in the summers when I was in graduate school in the late 1970’s - early 1980’s. And it was before the days of the “GlucoMeter,” and before “split doses” of intermediate-term insulin really caught on.

Why did I write the above? To address the issue of insulin sensitivity. It was different for each of the campers in my cabin. Just amazing. Two young men, the same size and weight, might take very different doses of insulin each day. And this one is kinda’ scary - one of my ten-year-old’s had to take a “slug” of 80 units of NPH each morning and his urine tests (that’s how we “checked” blood glucose levels at the time) still ran high every night.

In the Intermediate and Senior (teenagers) Boys’ Cabins the “average” daily doses tended to run higher than in my cabin. Why? Puberty. As a general rule an increased need for insulin is associated with puberty for boys and girls alike. The level of the increase is unpredictable and continues in the person until they are well into their young adulthood. As a person nears middle-age (assuming they are managing their diet and exercising regularly) their need for insulin declines. In other words, they appear to become “more sensitive” to insulin, but that’s not really what it is (long, long story).

As Dennis and I were growing up with T1D (and many of the other old timers, too) we did not have the tools that allowed us to make informed observations about insulin need. And, we certainly didn’t have the tools that allowed us to observe how our bodies responded to carb loads (well we could, but it sure wasn’t accurate by any means). Invention of the “GlucoMeter” allowed us to make those observations. And that helped us better understand the general topic of insulin sensitivity, and changes of insulin sensitivity that occur across the course of the day for some people, and from season-to-season for many people.

Remember this - our bodies are “dynamic” - because of this our insulin need, analogous to “sensitivity,” will change, often from day-to-day.

My need for insulin really began to decline when I started to manage my blood glucose levels very tightly in about 1972. Today I take a total of <20 units per day (via insulin pump).

What is the “secret” of managing T1D? For me it has been getting comfortable with the fact that it is “always changing.” And I don’t get upset when my blood glucose level “spikes” to near 400mg/dl - it will be okay, because I will do something about it and, eventually, my blood glucose level will come down to an “okay” level. But it doesn’t come down fast! You can’t “beat down” a high blood glucose level with repeated injections! You simply have to “follow your plan” ( for me that’s a correction bolus calculated at 1 unit per 100mf/dl that I’m “over 120mg/dl”). And then you “wait.” That’s all, get up and do stuff, and “wait” before you do another bolus. After four hours if I don’t like my blood glucose level I may take another bolus, but I seldom have to.

The other “big secret” (other than daily exercise and managing diet) is I have to “get the basal right.” If my basal insulin is not right I could bolus until I was blue in the face and I would never get my blood glucose level to run “normal” and “stay normal.” For me, I have to have adequate insulin “running in the background” (i.e., my “basal”) for correction boluses (and meal boluses) to do their job. With my insulin pump I run five different basals that change from one level to the next at set times each day. And I can tell I’m about to have to add a sixth basal.

So how can I tell I need to add a sixth basal? A “pattern” in my blood glucose levels has developed that indicates I need a little more basal for about an hour at a certain time each day. You never, I repeat, never make a change in anything based on a single observation (a finger stick, for example). It is only when you see a similar result at the same time of day for at least three days in a row that you make a change in your “routine.” Now, if my daughter offers me a scoop of homemade ice cream I’ll do a 2 unit “meal bolus” to cover the vanilla, but I won’t make a change in my routine.

Except when I post on this forum, diabetes takes me about 15 minutes a day (posting on the forum - that’s a joke - I tell long stories). Once you’re “in the routine,” it isn’t all that complicated.

I must share one more story about Camp Sweeney and then I’ll quit for now. As counselors, we had to continually monitor a particular intermediate girl camper who I’ll call “Cathy” (not her real name). When we went on “whole camp” activities, one of us, and often a medical student, too, was assigned to “keep her in sight and nearby.” Why? Cathy had, what we called at the time, “insulin resistance.” She was a little lady, about three-and-a-half feet tall and weighed about 60 pounds soaking wet. But, with her “insulin resistance,” she had to take over 70 units of insulin each morning (sometimes up to 100 units) if there was any hope of keeping her blood glucose level anywhere near “normal.” But sometimes (and it happened about once every five days) her insulin resistance would “disappear” and those 70 or more units of insulin would unload on her. Whoever was assigned to watch her had to listen to her carefully, and if she ever looked up and said, “I think I’m going low,” the counselor had to sit her down, send another camper to get the on-call physician, begin to infuse glucose gel into her mouth and help her swallow, while the medical student began to infuse one or more ampules of glucose intravenously.
We would sometimes infuse as many as three ampules of glucose before the episode would remit for the time being; then she had to be medically monitored for the rest of the day. I have often wondered what happened to Cathy.

Okay, my “secrets.” Relax. Don’t expect to “hammer down” high blood glucose readings with repeated boluses. Get the basals right. Treat emergencies, obviously. But don’t change anything in the overall treatment regimen unless a pattern develops.

By the way, insulin pumps are great - you can always turn them off during a hypoglycemic episode and then you don’t have intermediate-term/long-acting insulin rumbling around in your system trying to push your face in the dirt.

I hope this helps a bit. Give your daughter and family my best.

Bill

1 Like

Brian, you may be “over-correcting”.

With an insulin sensitivity / correction factor of 1 unit to decrease BG 80 mg/dl , 5 units of insulin would lower your daughter’s BG bu 400 mg/dl.

She also ate 54g of carbs.