I've been diagnosed for 3 years, but correctly diagnosed as LADA for about 1 and 1/2. My last A1C was 6.3 which I feel good about but would like to get a bit lower. I eat moderately low carb (about 100 a day) as I'm a vegetarian and I feel good about the choices I make for diet.
Lately I've noticed a pattern that seems a bit odd, but who knows, maybe it's pretty typical, of Type 1's in general, or LADAs in particular. I'll go along for a couple weeks getting mostly good numbers, with the occasional isolated high or low. My basal dose at that time is usually 13 of Lantus split in two. Then out of the blue I start getting lots of unexplained lows or unexplained highs. I slowly increase or decrease my basal accordingly (getting down to about 10 and up to about 15.). That works for awhile and then the same thing happens and I have to readjust again.
My question is, is this typical Type 1 vacillations? Or, to you LADAs, have you experienced this and do you think it is the "pancreas spurts" we sometimes get before our pancreas gives out completely? I've heard that concept mentioned but never heard anyone give examples of how they experienced it. I had two c-peptides when I got my type confirmed (two different labs). One was .38 and the other .70. That was about a year ago March, so I wasn't producing much insulin even then. Any thoughts or experiences like this?
I was kind of hoping for a few more responses to this, especially from some other LADAs! This morning I woke up at 48!! Despite having lowered my basal by a point last night. This is ridiculous! I’ve never woken up that low.
I’ve had LADA now for 18+ years, but I don’t think my experiences are the same, except for having unexplained highs and lows now and again. I still produce a little insulin from about 11am to 4pm. I have to take my long lasting insulin–Levemir–in such a way as to work around that, requiring 2 or 3 shots daily. Levemir is so much better than Lantus for me that it’s almost hard to believe. Had headaches and peaks causing lows all the time. When I’m on the pump (which I am part time on holidays, important weekends, etc.) I just program for a low basal rate during those hours.
I do have seasonal changes in the basal, my needs go up fall through winter. Also, on MDI, I often need to take 1/2 to one unit to cover the fact that my BG starts rising around 7am until I bolus for breakfast.
Thanks for your responses, Trudy and Hope. I get so few chances to compare notes with other LADAs! I find it interesting to hear that you still produce some insulin, Trudy. These cycles feel like what I’ve read about “LADA spurts” but I figured I was “running on empty” by now. Maybe not!
I have a doctor’s appointment in a couple weeks and I think I will switch to Levemir. Most people seem to get better results with it.
I joined the group LADA Diabetics just yesterday, hoping for some interesting exchanges with others, and new info, even though I’ve had LADA for so long. My medical team just refers to me as Type 1, with the usual beginning story of a first diagnosis of Type 2.
My basal needs change based on my menstrual cycle, season, and other unknown factors. The changes aren’t dramatic. So if I’m not logging well then it is hard for me to decide if the highs are due to bad basal or bad bolus. But I would say that mild changes every few months are normal, but I guess a change from 10 to 15 is not mild.
Yes, I adjust my own doses. If I had to call a doctor every time I needed to adjust, I’d drive them and me crazy! Besides, my doctor doesn’t know much about Type 1 management. I don’t adjust from 10 to 15 all at once. I never adjust more than a unit at a time, but yes, I’ve had to vary it by that much. It’s nearly always my bolus that gets off, so I’m definitely planning on switching to Levemir to see if that makes a difference. My I:C ratios and bolus doses have been stable for quite awhile. No menstrual cycle, no season change to speak of in the Bay Area. I wondered about developing infection when I was going high but nothing appeared (I’m rarely sick) and right now I’m in a low cycle. So that’s why I was wondering about LADA spurts. If it was a one-time thing I’d just chalk it up to the diabetes goddess, but it’s a pattern.
I just call myself Type 1 at this point, Trudy, because I got tired of having to explain LADA.
Hi Zoe, I’m coming up on two years since my formal diagnosis as LADA. I’m currently only on basal insulin, 20 units of Lantus in the evenings. It has crept upwards from a starting point of 5 units right after diagnosis, but 20 units has kept me, for the most part, in the neighborhood of 100 bgl for my morning fasting levels, the target set by my endocrinologist. I also try to stick around 100 grams or fewer of carbs a day, and try to get regular physical activity (which helps a lot). Just like you’ve described, I’ll have periods of time when I feel totally on top of this thing, then other times, such as now, my readings other than the fasting levels are elevated quite a bit. I hadn’t tested over 200 in months until the past three weeks or so, when I’ve had 6 or 7 occurrences, primarily in the evening just before my daily Lantus. Every time it happens I presume it is my beta cells faltering, but I have so far been able to corral it a bit by rededicating myself to more physical activity and closer monitoring of my carb intake. I also wonder if I wouldn’t be better off splitting the Lantus into two doses like you are doing?
Basal insulin can only go so far though. I’ve discussed it with my endocrinologist, who is terrific, and we’re both beginning to think that my next appointment (December) it may be time to add a regimen of fast acting insulin mdi to my treatment, or go right to a pump. Or maybe not, depending on if it mellows out before then!
The whole thing is just puzzling. It is good for me to read your post and see that there are others going through the same thing. I don’t exactly have any peers in the physical world to talk with about this kind of stuff. Thanks for your post.
Yes, it does sound like you are maybe coming up on the time you need bolus as well as basal insulin. I had to go on bolus shortly after basal because my post prandial numbers were quite high. You said you haven’t tested over 200 min months and now have 6 or 7 occurances, and I’m wondering how many of your post prandials are over 140? 140 is where damage starts to form, so you really want to be under 140 2 hours after eating and some people aim for 120.
Yes, I found that I’d always have highs before my evening Lantus dose until I split it in two doses. I’m actually going to ask my doctor to switch me to Levemir next time I see him though as more people seem to have better numbers with it and maybe tht will give me more stability. I guess I expected my insulin needs to rise as my body completely stops producing, but it’s the up and down that drives me nuts!
