Need help controlling and understanding


#1

Newly diagnosed back in November. Smooth sailing at first as I slowly, week by week, upped my basal insulin (tresiba) while monitoring my morning BS levels. Once my morning numbers got to around 120, I stopped increasing my doses. All was well for a few weeks.

I got then the libre, which I have become obsessive with checking my sugars. I got even more obsessive and anxious about a week ago when I had a really bad rollercoaster night low, high, low, high. This is without any mealtime insulin, mind you.

After an email to my doctor, he suggested to back off my tresiba down to 13u (from 19u) and see if that solved my problem. It seemed to help but between meals I will still go low if I don’t snack. Sometimes after meals my BG will return to normal slowly, sometimes quicker and sometimes may go below my “starting point”. He is attributing this to possible honeymoon period where my pancreas is sputtering. My c-peptide was .8 at diagnosis.

Very stressed - sometimes feel like i need to eat to avoid lows. They aren’t severe lows, technically I have only gone low once and it was 69. I catch the trend downwards because of the libre and stop by eating a snack. However I am sure I would go low without eating something. It’s an up down effect all day. It’s a pain in the butt and I feel like i am spending way too much time scanning and checking.

It doesn’t really start until afternoon though. The mornings I stay fairly stable.

Any advice? Only a few months in and already getting burned out. I haven’t even scratched the surface yet.


#2

Rex, I don’t use the Libre, so I am not going to try to help you there. I just want to say that I hope you can try to relax a bit. It will get easier in many ways once you get used to how your body reacts to insulin. Also it will be probably be easier after the honeymoon period ends, and you know more about what you will be dealing with in the long run.

I know it can be terribly frustrating. I get frustrated and I have been at this for 60 yrs now. You will eventually be able to roll with it. Give yourself time.


#3

Are you sure you aren’t my mom? She is a 62 year old T1 since 2 years old! Lol

Thanks for the reply. I know it will get easier. At first I thought it was easy, but right now it’s tough.


#4

You may find some advice here

I’m classic T1 since childhood, long time ago, but still have memories of the ups and downs. There are many others here with LADA.

Welcome!


#5

I’m obsessed with swiping too. There’s a new term called “Sugar Surfing” lol. The advice I got here was to read Think like a pancreas, and a few others. Now I’m readin Sugar Surfing”. All of them are extremely helpful. I find that I go back and read sections as this progresses and new things happen. After 8 months of the Libre, I definitely swipe a lot less bc I am getting a similar pattern (for the time being) . C pep was .9 at diagnosis, doc said it can fluctuate at early diagnoses. I posted some more info for you on my original thread.
Wishing you well! My friends here helped save my sanity. One day at a time and if you’re competitive like me, keeping in range will drive you nuts! I try not to let it. Lol most days…


#6

2 of the best books in my opinion !!!


#7

Targeting in-range blood glucose is important but I think it’s also important to consider blood sugar variability. Since you’re using the Libre, you can monitor standard deviation. SD is a reasonable proxy for glucose variability.

Swinging blood glucose is a tiring phenomena. It is not healthy. High variability will prevent you from bringing down your blood glucose average to closer to normal levels. When I first started focusing on variability, my SD was in the 50-60 mg/dL (2.8-3.3 mmol/L) range.

Using a carb-limited way of eating and strategically timed 30 minute walks helped me drop the SD to around 30 mg/dL (1.7). This improved my energy and my disposition. Gluco-normals, by the way, experience a SD of 15 mg/dL (0.8). Walking while mealtime insulin is peaking is a potent combination to control post-meal BGs. This tactic also works if you’re not taking any mealtime insulin.

Glucose variability is under-appreciated and under-rated. I think it’s worthwhile to work on reducing it.


#8

If I am having to eat to avoid slowly going low, is that normal? Because my morning glucose’s are stable.

I do move around A LOT during the day.


#9

It sounds like your Tresiba dose is still too high. The problem you might have though is that if you lower it by too much, it won’t last uniformly for 24 hours. Remember there are other basal options as well, including a split dose of Levemir which can be taken at different doses for day and night, and a pump. Tresiba is one of the newest basals, but that doesn’t mean it is superior to other options or is the right basal for everyone.


#10

Don’t forget that almost nobody has the same basal rate all day long. If your morning numbers are good, then keep the basal for that time period the same, and have a different one for other parts of the day. Most people have 4-6 different basal rates. The same thing applies to carb ratios. I used to have huge spikes after breakfast (300-350, kind of embarrassing), but as I slowly increased my carb ratios it now only spikes at around 200 (definitely an improvement!), and comes down to normal pretty quick.

And make sure you understand the purpose of basal vs carb ratio/bolus. To determine your basal rate(s), look at how level your numbers stay when you are not eating. To determine your carb ratios, look at whether the bolus returns the number to what it was before eating.

Also, don’t try to fix the entire day all at once, you won’t be able to do it. Focus on one time of day at a time, and fix that before trying to fix another time of day. Because everything affects everything, trying to do it all at once will just increase your stress. And look at the data from your CGM. Something that my doctor once said when I got my first CGM (this was a long time ago, and may be slightly less applicable with the more improved CGMs, but it can still be true when you are first getting started) is that the CGM is primarily for recognizing patterns. In other words, use it not to determine the exact basal and carb ratios, but when the beginning and end of the different time periods of your day are (when to start & end the different basals, for example). Use it to determine whether you are high but level (meaning change the carb ratio) or continuously going up & down for no reason (meaning change the basal).

This may all sound like a lot to take in, but it will become much clearer and less stressful as time goes on. And nobody’s settings are ever 100% perfect, because our bodies change, sometimes if our schedule or diet changes, or sometimes even the weather, can cause a small need for adjustment, but before long, you’ll know enough that you can make these changes with very little trouble. It just requires a little time and experience, just like any other change in our lives.


#11

The OP is using Tresiba, so basal rates can’t be adjusted hour by hour unfortunately. If levels are stable overnight and in the morning however, using a split dose of Levemir or Lantus may be preferable to one dose of Tresiba for 24 hours.


#12

Right. Yes my numbers at night and morning are pretty stable around 120-130. After I eat breakfast I’ll get a spike (depending on what it is) and then go down from there. Normally it’s a gradual decline now since I’ve reduced my tresiba, but it will continue to decline until I eat again. The arrow on my libre will normally be sideways but I have had it straight down before.

I don’t normally eat lunch until around 130 or 2 in the afternoon, but this process of eating, dropping, eating continues until about 11pm when I’ll eat a snack and level out.

It’s really frustrating and I’m only 3 months into this journey.


#13

If you have to eat because of the insulin you took, you’re taking too much! You should be taking insulin for what you eat instead.

Other people are right, if you’re not on a fast acting insulin and you do fine half the day on the dose you’re on maybe you need to look at twice a day insulin instead so you can adjust your needs,

We can vary how much insulin we need at different times of the day. I need a lot more insulin in the mornings than in the afternoon.


#14

Could be me issue. I’m solid as a rock from bedtime thru when I eat breakfast. After that it’s a battle.


#15

I would think it’s an issue for most type 1s. The pancreas doesn’t think in terms of basal or bolus, it gives insulin when insulin is needed, and the amount changes every second of every day. I’m sure Tresiba works very, very well for some, but just because it’s the latest doesn’t mean it’s the right fit or even a logical fit for many.


#16

I think my first question is what does your spike peak at? Some people are very strict about what is a spike, and others are more forgiving. In my opinion, if the number is between about 80-180 and headed in the right direction, you shouldn’t worry too much. The other question is how long it takes for the spike to end. One thing you could try is increasing the carb ratio and adjusting the basal to go with it so that the spike ends more quickly. I used to have breakfast spikes in the 300s, and they did return to good numbers, but it was somewhat slow. So I increased the carb ratios, and the spike had a smaller peak and ended quicker, but then ended up low. But once I adjusted my basal to go along with the increased carb ratio, my numbers are now great. If you have spikes, just adjust the carb ratio, but be sure to adjust the basal to go with it.


#17

I have been consistently reducing my basal dose. I am now only taking 4u of tresiba and no bolus insulin at all. This is from my libre right now. I ate some breakfast sausage, eggs and coffee about an hour ago.

I think I’m 100 percent honeymooning right now.