New LADA diagnosis but confused!

Type 1 and LADA
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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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Oh my goodness! I feel as if I’ve found the holy grail! I have 2 children who were recently dx with T1 within a matter of 2 months from each other. June 2016 and September 2016. Now January 2017 I’m having problems very similar to you. I put my son’s Dexcom on to see what I’m doing. My postprandial at one hour runs from 180-230ish. This is after 1 day of evaluating. My doctor dx me with T2. I’m 38, 125lbs and what I thought was healthy too. My GPA won’t refer me to an endo though and the antibody labs she did not run on me. I signed up with trial net for testing. I too experience lows and have for years. I was dx with reactive hypoglycemia though. But I’m worried I’m LADA. I’m sorry you are going through this but am glad I’m not alone.

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Wow! So sorry you have so much to deal with right now. Sounds like you are doing a great job with your boys (and husband!) though. For what it’s worth, my antibody testing came back negative and my insulin levels are actually in range!! My LADA dx was perhaps premature and I may actually be pre-diabetic. However, I’ve been under the care of a dietitian for the past 3 months and I can say that virtually all of my lows have disappeared and I rarely get above 150 at a 2 hour post-prandial now that I am consistently eating meals that include lots of protein, some fat and no more than 30g carbs. It took an adjustment and I do have eat every 2-3 hours but I feel so much better in general. I’m hoping this will get easier with time and I can relax a little on those carb levels once in a while but overall, the dietary changes have made such a big difference to how I feel that I am happy doing this for the time being. Good luck!!

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agree, this is a goooooood LADA topic. Hope it’s easily found to all the people who are not yet properly diagnosed, not yet a member of Tudiabetes… I had to read through probably close to a hundred pages/forum topics in the time I was diagnosed (which is not that long ago at all! in 2013) but I’m so glad there is more and more resources on LADA (but not that happy that it seems to be more and more frequent??)

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Hi DrBB: Since Type 1 is not a reportable disease, it is a bit tough to get numbers, and then of course most of the slowly progressive Type 1s (LADA) are misdiagnosed as having Type 2 diabetes (this is improving somewhat, but it is still a miracle if you get correctly diagnosed). However, each year there are about 15,000 cases of acute-onset Type 1 diabetes in adults. Then about 10% of “Type 2s” are autoantibody positive, have been misdiagnosed, and actually have Type 1 diabetes. 10% of “Type 2s” is a massive number, and slowly progressive Type 1 diabetes greatly outnumbers acute-onset. I was also acute-onset Type 1, in DKA, but was still misdiagnosed as Type 2 based on age not etiology.

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Thanks for the actual data @Melitta!

The more I read around here the more I realize how true that is. But this misdiagnosis thing still baffles me. I was dx’d at age 28 in 1983 and I never ran into anything like it, either with my original PCP or any of the others I’ve had through the 80’s into the 00s as school and career changes took me through any number of HMOs and clinics and whatnot (I saw my first actual endocrinologist in 2001 at Joslin). Anecdotally I know several others dx’d in their 20s over that period who never mentioned running into this, and a friend’s mom who was dx’d at age 37 back in the 50s, not to mention the esteemed Mary Tyler Moore dx’d at age 33 back in '69. All the instances I’m talking about were from back a while (I think the most recent was a guy I met on a business trip in 2004 who had just been dx’d at the age of 24).

This is all entirely personal and subjective of course, but it makes me wonder if, contrary to expectation, the problem of misdiagnosis is something that became MORE rather than less prominent over that period. One thing is that there just is so much more about T2 in the media than there was back then. In my case my dr explained to me right off the bat that it wasn’t unheard of to get “juvenile diabetes” at my age and that was why they were changing the nomenclature, (my official dx still reads “Diabetes mellitus: Juvenile type”). But it also seemed a much stronger assumption back then that “Mature onset” meant “Late middle age or older.” ALL the little pamphlets and recording booklets and collateral materials had pix of gray-haired folks bike riding, eating healthy meals and stuff (used to drive me nuts). Which may have solidified the idea that it probably wasn’t “Mature” if you were still in your 20s or 30s.

Again, just a subjective impression so I wouldn’t fall on my sword defending it, but there may be something to it. Maybe my doctor was just exceptional. But there really wasn’t all the “Diabetes epidemic oh noooooos!!!” hoopla back then, said hoopla being targeted overwhelmingly toward T2, and it wouldn’t at all surprise me to learn that it colors perceptions in doctors’ offices as well as out in the general public that create a strong unconscious bias in this direction.

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