New LADA diagnosis but confused!

Type 1 and LADA
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Would love to get your thoughts on what all of this means as I am confused as heck.

I am a 47 yr old female, 125 lbs, healthy (so I thought) and fairly fit. I have a son with T1D. I have struggled over the last couple of months with brain fog, tiredness, blurred vision, thirst, and some low blood sugars in the 50’s and 60’s (but I feel really lousy at this level). I went to my PCP concerned that I might have a very rare insulinoma (thank you Dr. Google). They checked c-peptide and insulin levels, which came back at 0.7 ng/ml and <2 UIU/ml, respectively. Fasting glucose was 85. Ummm, what??? This was puzzling so they then checked my HA1c which was 5.8%. They gave me a meter and asked to check postprandial glucose and it was 205 the first day and 199 the second day. At least I’m consistent :slight_smile: . The CDE said this was LADA and it was only a matter of time before I became insulin-dependent.

I am confused though, because I am still also getting lows about 3 hours after breakfast and lunch every day, despite eating a pretty balanced meal. She said that my results were a bit puzzling but may be my pancreas is struggling to produce insulin when I eat a big meal so it goes into overdrive but too much ends up being secreted and so I go low. Sounds plausible but it’s so confusing.

Does anyone have any thoughts on this?
Thank you!!
Laura

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It is possible that they caught it before your insulin production went down to the levels that would cause the catastrophic symptoms that signal most peoples’ diagnoses. The onset of Type 1 in adults can be quite different than in children. It can take longer for your insulin production to stop. I was on Lantus and oral meds for eighteen months before I needed mealtime insulin! I was diagnosed at 43 in 2009. I have a brother who was diagnosed when I was five in 1971.

My suggestion is to stop looking for precise definitions or signs. Deal with what is happening as it is happening. Test a lot. You will not understand what is going on without information. Be as bold and intent on figuring how YOU are going to deal with this as you were when you were learning how to help with your son’s diagnosis.

I would ask your son (if he’s old enough) to help YOU. Having a brother with Type 1 did not help me very much. Once I experienced it for myself, I realized I didn’t really know anything about it except these things:

  1. Having a “reaction” was the term for a low in the early 70s. It is a much better term, because it reminds you what is ACTUALLY happening. I have too much insulin. Since I don’t produce enough, that means I TOOK too much insulin. It didn’t just happen. I exerted myself too much or didn’t eat enough for the insulin I took.

  2. I have seen what happens if you don’t have tight control. My brother has had to have his eyes worked on because of the effects of high blood glucose. He can’t drive at night. This has lit a fire under me to take this VERY seriously.

Be well and come back here for any questions or concerns. I have found the online diabetic community to be some of the most helpful and kind people. They know what it’s like and want to help you do well. We are not in competition with each other. We can ALL do well as we deal with this. Please keep asking questions!

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Hi Timbeak48,

I REALLY needed to hear that today. Thank you. You’re right - it doesn’t really matter what the test results say or what the diagnosis is. I need to focus on how I am feeling and figure out how to respond so I feel better!! Easier said than done but this is good advice. I will be sure to include my sweet boy in these discussions too as he is a good listener and we have gone through a lot together over the course of his treatment. I am still very early on in this process so appreciate your advice.
Laura

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I’m in a similar position. I was diagnosed as Type 2 because of an annual checkup where I had a fasting at 180 mg/dL and a followup A1c of 7.8. I’m fit, not obese, have always “eaten well” (although high-carb), etc. Family history of Type 1 and Type 2, but anyways… My first set of antibody tests were negative, and my second set came back as “below reference but positive.” The interpretation my doctors have come to is that I’m “very early stage LADA.” I have low insulin and c-peptide levels, but I eat very low carb and my BG is currently in very good control. BUT I DO GO LOW!

As far as I can make sense of it, here’s the situation: I have very low insulin production, but I do have consistent endogenous insulin production. It is likely being slowly but surely attacked by my immune system, but it is functioning for now. This is consistent with my “not Type 2ness:” I have little evidence of insulin resistance; I am very insulin sensitive; and I have lows as well as highs.

Now, about the lows: my doctor thinks it works this way, even though I’m not currently on exogenous insulin.

  • I produce enough (basically background basal) to be stable under “normal” conditions.

  • I go high when I eat more carbs than my body can produce enough insulin to handle (due to decreased beta cell function from immune attack).

  • I go low when I eat no carbs for significant amounts of time or do intense exercise, because I do have circulating insulin: when I exercise intensely, I deplete glycogen from muscles and liver and my generally stable (I average 90mg/dL BG right now) blood sugar gets pulled into muscles and liver for refueling, causing a pretty consistent low (I drop to between 50 mg/dL and 60 mg/dL about 1 hour into a bike ride or two hours after I finish a strength workout if I don’t eat ~30g of carbs).

  • As is not uncommon in LADA and more “typical” Type 1 diabetes, I may very well have compromised pancreatic and liver function in other senses in addition to decreased insulin production from beta cells: when I do go mildly low, my body doesn’t produce (or release) glucagon in the alpha cells to stimulate the conversion of glycogen into glucose that is then released into the bloodstream.

tl;dr: To sum it up: I don’t have enough insulin production to deal with eating a normal, moderate carb diet; I have enough insulin that when I exercise or eat too few carbs I reliably go (mildly) low; I possibly have dysfunctional alpha cells so my body can’t autorecover from even mild hypoglycemia and I have to eat carbs to come back to “normal;” and just to make things fun, my body does produce enough damn glucagon that I still get liver dumps in the AM causing Dawn Phenomenon.

Freaking diabetes, man… it’s a fascinating set of diseases/disorders.

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I was diagnosed with T1D when I was 30. I believe it is LADA. I had several reactive hypoglycemia episodes in the year leading up to my diagnosis. It usually happened mid-morning after eating breakfast cereal. I understand that in LADA the pancreas cannot produce enough first phase insulin to metabolize most of the meal and then tries to clean up with the second phase secretions when blood sugar goes high. The second phase insulin overdoes it and you end up with reactive hypoglycemia.

I looks like you caught this relatively early in the process. Peer support, like this forum, can make a big difference in how well you live with diabetes. Good luck!

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This is interesting! It seems directly opposite to what my doctors think is going on with me: first phase is consistent; second phase is not strong enough to metabolize excess carbs (why I go high). I don’t have reactive hypoglycemia, but I do have hypoglycemia when I exercise. Apparently because first phase is still kicking out low levels of insulin, which are enough to make me go low when I get seriously glycogen-depleted.

So, this leads to a question: in Type 1, are beta cells attacked in the same way across all T1 diabetics? Or is there variation in the way beta cell dysfunction happens? I seem to have my own “basal” insulin endogenously, but am not able to produce enough to handle moderate-carb meals. So my (temporary) solution has been to lower what my beta cells are required to do by eating very-low carb (~30g-50g per day). But that sounds like others experience the opposite: a reduced level of endogenous “basal” insulin; but there pancreases can produce enough insulin in the second phase to cause a low after?

Anyhow, I find this all to be very interesting. I finally got comfortable with “where I am at in my disease progression,” in the sense of knowing that what I’m doing now is not going to work forever, but being happy it’s working for now. I still have a ton to learn about the underlying mechanisms of how it all works, though.

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The LADA acronym stands for Latent Auto-immune Diabetes in Adults, and as @Timbeak48 suggests it’s that “Latent” part that’s causing you so much trouble. It’s worth pointing out that it doesn’t actually apply to all cases of adult-onset T1 though it sometimes seems to be used that way. A number of us on TUD experienced rapid, acute-onset T1, more like what usually happens with kids, rather than the slow-developing form you seem to have drawn the lottery number for. Tim’s right that it’s not the label that matters, mostly, but it can provide a hook to help to clarify what’s going on. Similarly as regards “reaction”–maybe because I was dx’d back in '83 I’ve always used the term “insulin reaction” for it unless I’m talking to my wife or someone else whom I know has reason to understand the special sense the word “low” has for T1s. It certainly has more immediate explanatory force than “hypo” or “low blood sugar” for the non-diabetic listener.

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This is a really good idea. It was called an “insulin reaction” when I was a kid, too, but I’ve stopped using the term. However, since many people without any actual medical condition claim they have low blood sugar when they’re just hungry or grumpy, saying you’re having an “insulin reaction” does distinguish it quite well, and the fact that it’s a “reaction” does make it sound more serious (which it is) than someone who’s just hungry.

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This particularly irritates me, and I see it all the time. I also see every time a person who does not have diabetes gets dizzy, dehydrated, or sick for any other reason the automatic insistence that it’s “low blood sugar” as if they’re shooting up insulin all day. Drives me nuts.

To the OP. I can understand it probably feels pretty overwhelming. Your c-peptide results were not meaningful, though, in my opinion because they were taken with normal fasting glucose levels so the level doesn’t tell a whole lot because there was no call for insulin production going on in your body, and the c-peptide level (whatever it was, was adequate to keep your fasting level right where it should be). your post prandial bg levels are a bit alarming, but since taken outside of a controlled experiment such as an oral glucose tolerance test, it’s pretty inconclusive, but certainly warrants further investigation.

Your a1c is also essentially normal… though creeping toward upper end of normal for a physically fit non-diabetic.

Your specs warrant a thorough evaluation by an endocrinologist. Also, please note that a CDE can not make a diagnosis, that is way way outside their scope of practice.

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Also, I assume with having a son with T1 you know when to test for a post-prandial, right? If you had a carb-heavy meal and tested 45 minutes after eating, it might not bot out of the “norm” to have a 205 or 199. And with an A1c of 5.8, postprandials that high, a low fasting BG (85 is super normal), and possibly reactive hypoglycemia, that sounds a lot like pre-diabetes (very early Type 2). It can happen to otherwise normal, healthy folks, so…

I’m a plant doctor by training, so don’t take my word for it. But like @Sam19 is suggesting, I’d definitely be seeking a second opinion before accepting a diagnosis of LADA from a CDE!

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Actually, going low after meals is a common symptom of slowly emerging diabetes. Your insulin production degrades and the first thing to go is the phase 1 response. The phase 1 response is the stored insulin in your islet cells and it is released very quickly in response to meals. Once your insulin production starts to drop you can’t store up much insulin even if you can produce enough insulin response to keep your fasting numbers normal.

I would be that with an A1 of 5.8% and a fasting of 85mg/dl that if you took an Oral Glucose Tolerance Test (OGTT) you would fail. You can do your own at home. Back in 2010 I changed some medication and had a “Honeymoon” for a couple of weeks. I did my own OGTT. You can see the results, I actually did great and while I went a bit high and had some reactive hypoglycemia I didn’t have to severely limit carbs like I had for years. Sadly, the honeymoon was short, if I did the same OGTT today I would have probably have a dramatically different response going to 300-500 mg/dl and staying there for the entire test.

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Is this true for Type 1 & Type 2? I know everyone is different. Is it typical (whatever THAT is)?

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It’s not just a matter of accepting or not-- a CDE just truly can’t make a diagnosis-- no more so than you or I can. They certainly might be knowledgeable enough to-- but they don’t have that legal authority. In my own case it was the cde who immediately realized that I was type 1 instead of the GP who I was working with— but they had to bring their recommendations to the doctor in order to change anything

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Alright, so I wonder if that explains my current pattern, and I’m getting the terms wrong. I have enough endogenous insulin to maintain a reasonable fasting BG (along with Metformin), but this only works if I don’t “challenge” my system with significant numbers of carbs. So in my case, Phase 1 may be impaired (not enough stored to release to deal with carbs), but as long as I eat low-carb I have a sufficient Phase 2 (is that just “basal” endogenous?) to maintain a reasonably stable BG between meals?

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Lots of great information here. Thank you!!

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Wow, Laura, I could have written your post. I’m 49, with a son who is t1d since age 18, and diagnosed with adult onset type 1. Well, LADA, I suppose, but I don’t like that term. I think type 1 onsets differently in kids than adults, but it’s still the same disease. I’m also experiencing lows, but I’m not going too high yet. My lows are almost always after eating.

I’m still trying to get a handle on the entire thing, and what I learned with my son doesn’t apply too much. It’s entirely different for me.

From what I gathered, in adult onset type 1, you can become a bit insulin resistant before the disease fully onsets and you need insulin. So after you eat, and your pancreas has secreted insulin in response, that insulin isn’t absorbed quickly and your bg starts to go up. In response, your pancreas secretes even more insulin, resulting in a low.

In 2012, when I first had high blood sugar readings, the endo told me that I was developing type 1 based on her lab work, and she told me at that time she was more concerned with lows, for the reasons above. So I tested here and there, and I had episodic highs, but no lows, until August of this year. Then bam, I started dropping fast 2-3 hours after eating. My endo hospitalized me for 3 days, fasting, to see if there was an insulin producing tumor and to get a better read on things. I only dropped to the 40’s after all that time fasting! They should have fed me and I could have given them some 30’s - haha.

So even though I’m not working as hard at this as I could, I can give you a bit of advice: Don’t eat as much at meals, so you have room to snack. I’m not a big eater so this is hard for me. I don’t even get hungry until dinner each day. It’s almost like I have to have something on my stomach all the time. I don’t know if this is true of everybody, but I’ve found that if I drink even one glass of wine or a beer with dinner, I will be low right then and all night. If I eat candy or cold cereal, I’ll go high and then super low. If I eat steel-cut oats, though, my bg won’t fluctuate at all. Not even a few hours later.

Maybe you need a CGM so you can really monitor what your body is doing in response to different types of foods. If you go low without symptoms, most insurance companies will pay for that. I do have symptoms if I drop fast, but no symptoms if I’m dropping slow. The thing is, there is absolutely no way to tell if I’m going to drop slow or fast. It could be so fast that by the time I’m aware something is wrong, I’m too “drunk” to help myself. So the CGM has saved my butt.

Good luck. :slight_smile:

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Thanks for the great info! It took me a while to get my head around going low after eating!! So counter-intuitive but yours and several responses have helped me understand it better! Thanks for sharing!
L

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No, not necessarily. This has been the subject of a couple of threads on TUD. Onset for adult T1s seems to fall into two profiles. One I think is properly referred to as L-as-in-Latent LADA, in which the development is gradual, sometimes as much as a year or more, and often misdiagnosed as T2 and treated with Metformin etc. But some of us had a sudden-acute onset profile much more like typical “Juvenile” diabetes, in several cases following a sickness that seems to have triggered the auto-immune response. Mine came on that way after a nasty cold, and 4-6 weeks later my diagnosing Dr said I was within a day or so of DKA. I don’t know if anyone has statistics on it but just anecdotally from peoples’ self-reporting here on TUD it seems like the longer-slower onset for adults is more typical, but it’s certainly not the only way it presents.

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A follow-up question. I am having incessant thirst and have a weird taste in my mouth. Drinking water does not make it go away and I have now licked my lips raw, without realizing it. My blood sugars are not getting that high (low 200’s after eating big carb meal) and I am experiencing lows as well so I don’t feel that this is my body trying to detox ketones. Should I just keep drinking more water? I’m probably only drinking around five 8oz cups a day.

Thanks.

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That’s not enough water. Especially if you’re already dehydrated. Double that, at least… any time your blood sugars get above 200ish your body will dehydrate as your kidneys attempt to purge the sugar from your blood.

More water, less blood sugar spikes

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