Hi all!
Short backstory, because I’ve already posted the long one; Got diagnosed with LADA about 6 weeks ago, was supposed to start Januvia in 2 months, but sugars got higher and started with basal insulin almost 2 weeks ago instead.
Now I’m supposed to start with like 0.5-1 units of bolus insulin in the morning, cause I always spike after breakfast.
I don’t really know what my question is, I just think I want to know if anyone else has had it like this? How long did it work?
I’m kind of stuck between “Great, only low doses of insulin for now, hope it lasts awhile” and “jeez, can’t I just get the whole darn thing completely right now? I hate waiting around for my pancreas to die on me”. It’s been six weeks of waiting around for some clarity, and I just feel like it’s not gonna end until it’s full on typ 1. Which I guess is stupid, because then it’s still a looooot to think about, and try out and so on.
I think I have yet to fully understand how dangerous and exhausting this disease is in the long run. I just want to be “over” with this first phase…
Honeymoons are meant to be fuy enjoyed! For now, your body is mostly acting as it should. There’s a really big learning curve associated with how you respond to insulin and when to dose and how much you need. Your doctor’s can only guess, but you need experience to dial in the right numbers For now, you’re fortunate to be learning all this with very small doses, of which you can only do minimal damage if you guess wrong.
You’re not exactly just waiting for your pancreas to die. All that will happen is that you’ll steadily have to increase your dosage. Trust me, the gentle change is much kinder than throwing all the new responsibility and consequences at you at once.
Mine was full-on at dx so I didn’t really experience the honeymoon thing, but I’ve heard other people voice a similar complaint. In some ways it’s simpler to have it “over with,” because of the unpredictability. Parents struggle with that the most I think. I can only say: CGM is your friend, if you have one. If you don’t, see if you can get prescribed one asap.
I could also say something about how much easier the tech and modern insulins make insulin dependence than what it was like on the crappy old R/NPH stuff of the 1980s, but it’s still not fun.
Also we had to walk 8 miles through deep snow in our bare feet to get to our one room school house where we had to chip the ice off the water bucket and provide our own coal for the stove.
That’s a pretty common pattern, and with a CGM you may be able to identify others that will help with predictability. Doesn’t sound like you’re carb-counting, may still be early for that yet, but it helps to get a more precise dosage and avoid spikes and drops.
So far my honeymoon is at about 26 months. During this time I haven’t noticed any difference in the amount of insulin I need.
For the first month I took Januvia and basal insulin. Even though I ate extremely low carb < 50 per-day and was walking 10,000 steps a day I could not maintain in range during the day.
After the first month I started taking 9 units Tresiba and 1-2 units of Fiasp per-meal. I also take 10mg Jaridance. About 2 months ago I stopped taking the Januvia and say very little difference. I have experimented with stopping Jaridance but it almost double my insulin requirements so I’m sticking with it.
For me I take about 1 unit of insulin per-25 carbs.
Since I still make some insulin my body can account for my missing the mark a little.
My personal theory is if I keep really good control I can slow down my beta cell loss. I am a sample size of 1 but so far my C-Peptide has been stable. At diagnosis 26 months ago it was .91 and a few months ago it was .94.
I started on Jardiance about a year ago and it has been amazing, helping me flatten out spikes and getting me into a < 6.0 A1C for the first time in 37 years with T1. I’m taking 20mg/day.
Sometimes your sugars are easier to manage after your pancreas stops producing because it can tend to sputter and cause a rollercoaster effect. Mine came on fast but I was having low sugars without knowing what it was I think I had my honeymoon before I was diagnosed so I didn’t get to enjoy it. Mine was when I was 21 so LADA wasn’t even a thing back then but I think I was more standard type 1 juvenile onset. Maybe I was just immature.
I am glad you are starting on insulin. Will they put you on basal as well? I guess so at some point.
I went into dka and then no real honeymoon. I hope it goes well for you and lasts a long time with low doses. I know it must be hard anyway but it is better than dka.
I know it doesn’t really make sense to almost want full on insulin dependency, and I don’t know myself why I feel like this, it’s just what I feel.
My first c-peptide was 0.76, and the one 2 weeks later was 0.19, so I guess that means it’s gonna go down pretty fast? Unless it’s stopped for a bit now…! I don’t know.
And that’s just it. The uncertainty of it all is hell. But I guess there is a lot of uncertainty with no working pancreas as well.
I take 3 units of basal at night! It’s been working really great! Instead of jumping up and down all night, now my sugars are really steady! And I tried my first dose of 0.5 units for breakfast, and it really helped keep the levels down! It felt great seeing the line keeping mostly steady. Even though I don’t really go SUPER high without insulin, having read that even a bit higher sugar is bad, I get scared. So I feel much calmer now
When I was first diagnosed, I really wanted to do everything to not have to take insulin and so I ended up jumping to a low carb diet pretty much starting the day I was diagnosed. Not sure if that was it but my honeymoon lasted about 18 years. Now I take insulin off and on based on what I eat though I mostly stick with a keto diet. I guess my point is, enjoy the honeymoon
That’s actually one of my issues. I just can’t do any sort of diet. Low carb or anything. I have a history of eating disorders, and if I restrict my diet even more, I just know I will lose it again… I can’t deal with changing the way I eat, even though I know my body would be better off. My mental health is too important. But maybe down the line I will be able to eat better. Right now though, it’s just not possible…
If you are taking insulin now your body has less need to make insulin so its possible you could still produce a 0.76 if not for the fact you were taking insulin.
My doctor told me there is no point in monitoring my c-peptide since I have type 1 but I still wanted to know if I was losing beta cells at a high rate or if my plan to keep good control was possible slowing things down.
I ended up paying for my own c-peptide test. I ate breakfast like normal but didn’t take insulin. That way when I have blood an hour later I knew my body would do what it could to produce insulin. Right after the blood draw I took insulin to get it back down.
At diagnoses my c-peptide was .92 about a year later while taking insulin I got a 0.5.
Another year later when I paid for my own test and skipped my insulin to see what my body would do I got a 0.94 so I think I’m still making a similar amount of insulin to what I did at diagnosis.
Everyone is different so some people might have a pattern like mine and some may not. Just wanted to share this example and point out while your on insulin it will interfere with the result of your C-Peptide.
Where you fasted when you had the 0.19 C-peptide drawn? If you are fasted your body has no reason to produce much insulin and since C-peptide is an indicator of how much insulin you are producing if no insulin needed then no C-peptide either.
I think I was, but I don’t remember. But I’m confused about this, because at the lab were I work, we want everybody to be fasting when they take c-peptide… Why do we want them to be fasting if that’s not accurate? So confusing.
