Still LADA honeymoon, but serious issue


#1

What I am going to describe seems impossible. I am such a newbie and don’t understand. I was diagnosed with LADA 3 years ago. Began a strict ketogenic diet then and test every few days, with BGs being good. The last 10 days I have awakened every night at 2-3 am with a feeling of a hot flash. I feel hungry and have a headache, so I have been eating a zero carb cheese snack and an unsweet drink. After an hour or so, I go back to sleep. Last night I decided to check my blood sugar. It was 70. Usually it is 100-140 when I test 2 hours postprandial. It doesn’t seem possible. I thought my pancreas was slowly not producing insulin. I do see my endo for my biannual visit next week, and I am so fearful to start insulin. I also am having major surgery on the 19th (bowel resection), so I am super stressed in general. Any thoughts? Thank you.


#2

I didn’t mention I take no insulin, eat 30 grams carbs or less daily.


#3

Well, diabetes is like that–I don’t know if any of us feel like we totally get it.

What you describe is pretty confusing, but I’ve heard other people struggling with how erratic and unpredictable things can be in the so-called “honeymoon” period, so it’s not totally unexpected. I’m curious that you’ve been in honeymoon so long though. Were you tested for antibodies–is that how the diagnosis was made? There is at least one other member here, @David49, who is positive for antibodies but has not yet gone on insulin even though the dx was several years back–pinging him in case he can shed any light on what you’re experiencing.

Not unnatural, but the tools are so different now from what I experienced when dx’d back in 1983 that I would urge you not to be overly fretful about it. We used to have to constantly adjust and constrain our lives to fit what our medication was doing, but we now have the tools to adjust our medication to fit our lives, and that’s a huge difference from how it used to be. There’s a learning curve, to be sure, but even at the beginner level it’s light years better than it was back then. I would agree, though, that it’s not something you want to take on in the midst of dealing with major surgery. That’s going to have all kinds of effects on your overall metabolism that would interfere with getting adjusted to an insulin regimen.


#4

I am definitely still in the not yet on insulin therapy category, although I’m not terribly pleased about that. If I lived in a different place with access to different medical care, I’m fairly certain I’d be on low-dose basal insulin and have a prescription for mealtime as needed.

But I don’t live in such a place, and have to deal with the medical care I have available to me. On to the actual question:

I don’t have experience with nighttime lows, but rather the opposite: even with eating very low-carb, serious exercise, etc., I still experience significant Dawn Phenomenon, and it seems to hit for me between 3:30am-5:00am consistently. My BG will rise anywhere from 20-40 mg/dL thanks to Mr. Liver, regardless of what my bedtime BG (usually 90-110) was.

However, I do know this: the “hot flash” feeling that wakes me up on occasion is definitely attached to hyperglycemia. @LHromika, it seems possible you might be experiencing something akin to “reactive hypoglycemia,” although 70 mg/dL isn’t particularly low. Pure speculation: your body might be reacting to a post-meal high by producing insulin, and by the time you wake up and test your body has corrected.

The most frustrating thing to me about my case of slow LADA (other than having freaking complications already) is that my reactions from week to week (if not day to day) can be completely different. I think it is related to two things:

  1. I have regular, but inconsistent, production of insulin endogenously. Sometimes it’s in the “normal” range, and sometimes it’s definitely not. This is confirmed by lots of testing over the last three years.

  2. One of my doctors is also convinced that in addition to beta cell decline, I have some kind of “glucose sensor malfunction” for lack of a better term. I don’t know the biochemical terminology, but she thinks the mechanism by which the body detects glucose at the portal vein is compromised in me, so that I don’t produce insulin at the right times in relation to eating. So even when I can produce some insulin, it often is timed poorly in relation to my eating, exercise, or daily routines. This leads to a lot of ups and downs, etc.

Sorry, I’m sure none of that is directly helpful. I am no longer afraid of insulin (I was, initially, and made the mistake of telling my doctor that…that has been the go-to reason why “we’ll just put it off,” even though my opinion on the matter has changed) therapy. I suspect that when I start that therapy, it will actually simplify my daily routine a bit, and give me a bit more flexibility in dealing with hyperglycemia. Right now, I have zero tools to bring down a high that work in a reasonable time frame. I’m already insulin sensitive and eat very low-carb, so exercise doesn’t always bring me down (and sometimes sends me up, depending on what my liver is doing on a given day)…


#5

Thank you so much! Yes, my GAD antibodies were very high and the lab diagnosed me with LADA. My primary care doctor referred me to my endocrinologist, who concurred and said he rarely gets an early stage LADA patient. He was fine with my keto diet and mentioned that the first thing he would precribe when necessary is mealtime insulin. But so far, that has not happened.


#6

Bless you, this thing is a burden! So far I have been ok, with the exception of this middle of the night issue. I will let you know what the endo’s take is on this when I see him Monday. I try not to think about LADA, but I feel something is either brewing, or getting ready to happen. Hate this feeling!!! How old are you, David? I am 65.


#7

I’m 43, and I totally understand the “something brewing” feeling. While I am doing pretty well all things considered, I have developed some serious complications even at low A1c (I’m generally in the 4.6%-5.2% range when lab work is done), and I have terrible Dawn Phenomenon, especially if I stray even a wee bit from very low-carb eating. And being positive for antibodies, I suspect (as do my doctors) that it’s just a matter of time til my beta-cells give up the ghost.

However, that has been true for multiple members of my family, and I’m not really that worried about it at this time. Several members of my family have been diagnosed and slowly but surely become insulin dependent, but it can take as long as 10 years. And they all did (or are doing) fine! I’m pretty sure I’ll be fine too, although I am worried about the costs.


#8

Would you believe I am the only person in my generation or my parents generation with LADA (or even T2)…and we are a large family. My grandmother, who died before I was born in 1953, did have diabetes but I don’t know what kind. I will check in after Monday and let you know what endo says. Thanks for CV the info!!