LADA insulin mysteries

Type 1 and LADA
1

Hi everyone! This is my first post and I’m really glad to have stumbled upon this forum, when I did, a few months ago. I don’t know anyone in real life who has T1 or LADA and this forum has been a great place to hear about and learn from other peoples experiences.

I’ve been managing LADA with a low carb diet for years but started on insulin 2 weeks ago. My endo gave me a humalog kwikpen so I could try 1/2unit increments as I was quite scared of taking insulin and eating carbs. Exactly two weeks ago, I started with 1/2unit per meal, gradually increasing my carbs and insulin for each meal so that now I’m up to 15g carbs at lunch/dinner and 2u insulin. My carbs come from nuts and salads mostly with a low carb tortilla or slice of bread at times. My numbers seem to stay between 80-130 with occasional highs in the 160s which come in the 2-3 hour time window after a meal. I don’t quite understand why that is and I don’t have enough data to actually see any patterns yet either. Most likely protein or complex carbs + high fat slowing digestion to when insulin is all but gone? This is mystery #1 for me.

Mystery #2 is that I get a headache almost daily. Most of my life I’ve never had headaches and to have one daily is quite annoying. No lows or super highs so I’m confused about what may be causing the headaches (not dehydrated, sleep or caffeine deprived). I check using my One Touch Mini which I’ve used for years and 2 weeks ago I also got the Freestyle Libre sensor. The sensor numbers seem to match fairly well with the meter readings.

Mystery #3 is that in the last week, it seems like my own insulin production has gone to zero or I’ve developed more insulin resistance or something else that I don’t quite understand. My waking numbers have always been around 82-84 with no change by the time I eat breakfast. However, this past week they’ve been a bit strange. I wake up with about 92-95 but the minute I get out of bed the numbers go up to 105 and then by the time I eat breakfast (30min after getting up), they are as high as 130. I took basal insulin (Lantus, 4u) for the first time last night around 11:30pm, and today morning woke up with 85 that quickly went up to 105 when I got out of bed.

Lastly, mystery #4 is that once my number stabilizes after a meal (approx 2-2.5 hours later), it stays static at that number for several hours after that. This makes me think there is no basal insulin in my system, which is strange since just two weeks ago, I was doing fine without any external insulin, and during my first week of external insulin, none of these mysteries existed. My most recent A1c was 5.3, checked 2 weeks ago, before starting insulin. Over the years my A1c has mostly stayed below 5.9

Perhaps you have some thoughts on what may be going on that could help me understand and solve these mysteries. While I understand 2 weeks isn’t a very long time and the body may need more time to get used to external insulin and carbs, the headaches, the morning highs and the random post-meal highs are making me want to reconsider taking insulin. The reason my endo prescribed it is coz I got pregnant and she wanted me to eat a few more carbs than I have been eating.

I haven’t quite figured out what my I:C is nor how much insulin I need to bring down glucose by how many points (not sure what this is called…ISF?).

Has anyone had similar experiences when starting insulin or adding carbs or otherwise?

2

I think this might be the missing factor—pregnancy causes increasing insulin resistance in most people. Is it possible that a lot of the changes you’re observing might be due to increased insulin resistance due to pregnancy? In that case, it might be even worse if not taking insulin.

3

@cardamom I am no longer pregnant so I don’t think that is the likely reason.

4

Well it sounds like you are going through the normal progression of LADA where your pancreas is not producing as much insulin as it used to. I would go back to a strict low carb diet myself and see if that helps the headaches. You could be going high enough to cause them even at 160 if you are not used to BG’s in that range.
The rise in your BG in the morning is probably dawn phenomenon and is very hard to stop although it is possible.
I’m sorry if this is a sensitive topic but by no longer pregnant do you mean you miscarried? If so that would probably mess with any diabetics BG’s. The stress alone would cause higher BG’s and the hormonal fluctuations can wreak havoc.

Otherwise for about a week and a half during my cycle I become incredibly insulin resistant when normally I am very insulin sensitive and I know I’m not the only one who has this issue.

5

These are all very complicated questions with complicated answers. Your best bet is to write them down and ask your endo the next time you have an appointment.

Diabetes is a complicated condition and the human body is a complicated system. There is rarely a straightforward answer or solution to our problems. For example, I doubt if any one factor is contributing to your headaches; it’s probably the interplay between many things. But you should still check the list of side effects for Lantus and Humalog (found in the large folded-up pamphlet that comes with these drugs). I bet headache is one of them. I also started on Lantus, but switched to Tresiba and am much happier with it.

As to mystery #4, this is not a basal insulin issue. The role of basal insulins like Lantus is not to lower your blood sugar when it’s high, but rather to keep it from rising overnight. The only type of insulin that can lower your blood sugar is bolus insulin like humalog or novolog (among others). If your blood sugars stabilize at an elevated level then you need more humalog to bring it down (note: exercise will also help bring it down).

Regardless, you’re numbers are great and most people would be ecstatic to keep their A1c below 6. I don’t say that in an attempt to belittle your situation as insignificant; we all need to do everything possible to keep ourselves and each other healthy, and some people just have better numbers than others. But I say that to point out that you are already doing a great job. I know it’s daunting and scary starting on insulin, I went though the same thing. And it does take a while to figure it out (took me over a year). But with the help of a good endocrinologist, and with some patience, you will figure it out.

One last thing, if you haven’t read Think Like a Pancreas, now might be a good time. It’s a good primer for people beginning insulin.

Good luck.

David

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6

@Firenza You are probably right about LADA progression. I figured I’d do a test and did not take any insulin last night for dinner nor today all day. No headache today!! I ate the exact same breakfast today as yesterday. My 1 hour numbers were higher today (144) but my 2 hour numbers were quite similar (104). Yesterday I had taken 3u insulin for breakfast and thats when my headache started. I also did not have any number higher than 120 yesterday. Maybe my headaches are related to the quantity of insulin I’m taking? When I tried 1/2 or 1u during the first week, things were ok. When I moved up to 3u, the headaches started. This may just be a timing correlation but maybe there is a connection, I’m not sure.

Since I didn’t take any insulin for dinner last night nor any basal (no basal today either), I was expecting my waking up numbers to be super high. I woke up with 85 and it did not rise 20-40 points as it has been. It only rose 5 points by breakfast.

It is certainly possible that my hormones are still not back to normal after the miscarriage and are causing headaches (which apparently they do, according to google) though I didn’t have a headache today. I’m gonna stay off of insulin for another 2-3 days and see how the headaches go. Seems like too many variables to determine anything conclusively! I’m glad to have learned about insulin sensitivity and hormones from your experience :slightly_smiling_face:

7

@David48 Yep…complicated indeed and I do plan on talking with my endo about this.

My very limited understanding about basal is that its slow acting insulin and its supposed to keep your numbers somewhat in range (ideally), all day, not just overnight. I need to learn more about it as I’ve only tried Lantus once and don’t quite fully know what to expect from it.

Thank you for telling me how long it took for you to figure insulin out. I was thinking 2 weeks would be enough but clearly that hasn’t been the case. I am more confused now, two weeks later, than I was before I started insulin!

I downloaded that book a week ago but haven’t had a chance to read it. Will try to get to it and see if it clears up the misunderstandings I likely have regarding insulin.

Thank you David.

8

I dunno about Dr. Google… :wink:

Basal insulin isn’t necessarily supposed to “keep you in range” – it’s supposed to be set to keep you stable. If you start out in range, you should stay in range; if you’re high or low, basal alone should keep you around the same level.

I did a similar experiment several years ago - before my beta cells stopped making much insulin. I found that the first day, the numbers were great, but after a day or two, those numbers rose considerably. I did not keep it up for too long, though, so I couldn’t say where that trajectory would go… Today, however, if I stop taking any insulin, it takes about an hour for my numbers to start rising - and up they go!

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9

Haha…I agree on Dr Google. Until last night, I had only thought about insulin being the culprit (not hormones), which I still think it is given that I didn’t have a headache today. But then again, one day is not enough data to derive any conclusions. My plan is to not take insulin for the next 2-3 days and see how things go.

And…I’ll do some googling on basal :wink:

10

@Kio
I can assure you that if your pancreas was not producing any insulin, you would have SIGNIFICANTLY higher numbers.

I would strongly recommend you schedule an appointment with your Endo and have a good discussion. It sounds like the Endo simply gave you an insulin pen and sent you on your way to figure it all out yourself. Perhaps I simply misread your post however.

11

Also, don’t be afraid to shop around for an endo you like. A good endo should gives you good, thorough explanations, and should spend the proper amount of time with you. My cousin went through 3 or 4 of them before finding one she liked, which was great for me because she had already done the hard work or ruling out the bad ones by the time I was diagnosed with LADA.

12

@Tim @David48 This is my fourth endo and the first one who actually seemed to at least know about LADA! It was also my first visit with her when she prescribed insulin. And yes, she did give me a pen and sent me on my way to figure things out. I plan on seeing her again in a few weeks. Hopefully, she’ll be more open to discussing the things I’ve posted about.

13

The glucose metabolism and insulin’s role is fairly complex since there are so many inputs that affect the glucose level output. I’ve been using insulin for 34 years. While there are times I think I’ve learned all there is to know about how insulin works in my body, I am surprised to regularly learn new lessons.

Your curiosity will serve you well. Asking the right questions is half the battle in understanding how insulin works for you. Just don’t get too invested with any lesson you learn as diabetes and the way insulin works for you has a way of changing! Good luck.

14

@Terry4 I started reading the book Think Like a Pancreas that @David48 recommended and hope to be able to learn enough that I may deduce some answers to my questions. I try to keep in mind that the human body is not a deterministic system and every day is a new day.

For now it seems like my headaches were because of the higher insulin dose (3u/meal). I have not taken any insulin in 2 days and have not had any headaches, all else remaining as equal as I can keep it :slight_smile:

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15

I spoke to my endo and she told me to stop taking insulin, which I already did a few days ago and have been happily headache free :slight_smile: She thought I may be allergic to something in Humalog and thats why I get the headaches but she did not have any thoughts regarding the other mysteries :frowning: I plan on trying novolog this week to see how it goes. The endo said Lantus takes 5 days before I’ll see its effect on morning numbers. Anyone have any thoughts on that?

16

I doubt it takes Lantus that long to be established as a basal insulin (its duration of activity is about a day), but in your situation, you are getting used to every day being different and just getting calibrated with insulin use. I miss the early LADA days of a half unit having significant result, but there were also a lot of frustrations with having a semi-active pancreas. I might make a little endogenous insulin still, but not much anymore. Even so, every day is different for all of us. It’s one of the things that makes the challenge of D so great. It. Is. Different. Every. Day.

For bolus insulin, if Humalog produces a reaction, Novolog has a similar activity curve, so that could be a good substitute. Apidra is another to consider, it has a quicker onset and shorter tail.

You’re asking all the right questions – there are lots of discussion threads on this site as you get in to it – use the search function on this forum liberally!