Possible LADA and yo-yo numbers

I’m in the process of diagnosis and confused!

I started with reactive hypoglycemia, and now I’m having high post prandial numbers when eating normal carbs( sometimes as high as 185 ) but mostly normal fasting numbers with an occasional 100-105. My post prandial can get up between 150 to 190, depending on what I eat. The other day I drank a high protein Ensure and fell asleep ( it was about 10 PM ). When I woke up about an hour and a half later, my blood sugar was 230. I went back to sleep, and then woke up about another 1 1/2 to 2 hours later and my blood sugar was 68. Several weeks ago, I drank a small grape slush from sonic. My blood sugar peaked at 189. At that point I ate about a tablespoon of peanut butter to try to slow the impending crash. A little while later my blood sugar was at 74. I don’t know what to think about these highs followed by lows.

Some numbers:
I’ve been going to an Endo for about 9 months. At my last visit she said she wanted to check for LADA. My C-peptide has been 0.3, 1.1, and 1.7. My insulin has also been in the low normal range—last check was 6.8. I had the GAD65 run, and that came back normal (there was no specific number, it just said that it was <5.0, and the range was 0.0-5.0 ). I thought my doctor was going to run other autoantibody tests for diabetes, but the lab I went to ran Antineutrophil Cytoplasmic antibody, which seemed inappropriate to me…maybe than ran the wrong test? I looked it up, and it seemed like it was a test for other disorders. My cholesterol was a little bit high at 220 and my LDL was a little high at 114. Other cholesterol measurements were great, and triglycerides were fine. I’m pretty sure I know the cause of the high cholesterol though… Over the last several weeks I’ve had more red meat, and that always causes my cholesterol to go up. I honestly didn’t even think about it until the test results came back.

I am probably borderline underweight for my height. My weight is somewhat steady right now, ranging in about a 4 pound range depending on the day, but I have lost 10-14 lbs over the last several months (depending on the day). A few weeks ago I went to the doctor thinking that I might have a UTI, but he said that I might be occasionally throwing a little bit of sugar in my urine, causing the frequent urination symptoms I’ve been dealing with.

I don’t know exactly what’s going on…it might not be LADA, but I just want a correct diagnosis. I’m not saying it’s not type 2, but I am very concerned over being misdiagnosed as a type 2 based on my cholesterol level and the negative GAD65. I just don’t believe I fit the profile of a type 2 based on my low weight, low C-peptide, and low insulin numbers.

Anyway, I go back to the Endo soon. I think I am going to ask her about the fact that there were no specific insulin autoantibodies run ( I plan on approaching it as maybe the lab ran incorrect test/left out test, because it was a freestanding lab, not the doctor’s office ) and I want to be sure to mention the weight loss, because I don’t think I’ve ever told her that. Actually, that is part of the reason I believe that my cholesterol got high… I’ve been trying to gain some weight and eating whatever, as long as it’s not too high in carbs.

Any comments/advice for me as I struggle to make sense of all of this?

Your data sounds like LADA however I’m not a doctor.
Your numbers are typical. When you go high your body overreacts to bring it down.
That’s exactly what happened to me however I wasn’t checking it. I was getting hypo glycemic after exercise and when I woke up.
A week later I was sick and went to a doctor with sugars of 600.
I went on insulin right then and I’ve been on it ever since.
However I was young and had the usual type 1 fast onset.

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Sure sounds like reactive hypoglycemia, though if my reading is correct the Ensure is a pretty modest carb hit at 19 grams. But your description of eating a grape slush sounds really familiar. My daughter (adopted) has developed reactive hypoglycemia and that’s exactly what she goes through. The standard advice is just to avoid or limit carbs in order to prevent the cycle from starting. Antibody tests notwithstanding, I don’t know if a LADA dx would help in terms of treatment. You’re hitting these big spikes but then crashing low already, without any intervention, so putting insulin into the mix is only going to make those crashes worse—or so it seems to me. Are you on any kind of medication now? From what you say I’m assuming not, but it would be helpful to know. In any case, in your next meeting with your endo I would worry less about antibody tests and just focus on what’s the best way to ameliorate these BG swings.

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No, I am not on any medications.

In order to avoid the highs, I have to eat super-low carb. The dr has already recommended max 25 g carbs per meal, but that is really hard to do! Sometimes I feel sluggish when I eat so low carb. Plus, I really can’t lose too much more weight. My BMI is 20.2. I guess I wish I could eat a few more carbs without the spike/drop happening, but I should also be thankful that I haven’t yet gotten to the point that so many others have to deal with.

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For weight gain try @CJ114’s tried and true method of getting your own personal jar of peanut butter and throwing a handful of your favorite nuts and just scraping off the top layer of peanut butter along with the nuts. Super high calorie but plenty of fat and protein so BG stabilizing. Also cream cheese is super high calorie, add some smoked salmon and you’ve got a yummy little calorie bomb.

I would absolutely go for getting the rest of the antibody tests (I think there are 6) but you are in the no mans land as far as Dr.s treating you is concerned since there isn’t a diabetes medication they can safely give you. Have you had any scans done of your abdomen to check for anomalies? There are several conditions that can present as early diabetes but are really treatable issues that a CT scan can pick up.


I forgot to mention that I have a pretty sensitive GI system. I’m severely lactose intolerant ( for example, if I eat something with a decent amount of dairy, it takes two extra strength Lactaid, and then I will still have some symptoms, but tolerable ). Also, too many nuts cause gastric distress. I’ve been gluten free for about 8 yrs, but not diagnosed celiac. I began eating gluten free because of terrible reflux and later a doctor told me to eat gluten free for my joints, which are also an issue.

I have not had any imaging done.

I’m still trying to learn a lot… I remember reading that often the first phase of insulin release is messed up, causing the high. And then second phase comes in and tries to clean up the mess of all of the extra glucose. My untrained and uneducated mind was thinking that if there was a way to help the first phase issue (to avoid the high), that the second phase insulin release would not be as dramatic and avoid going too low. That’s just where my mind goes, but I know that I don’t have enough understanding of it all. So I get it that my thoughts on that may be way off base.

Agree with @Firenza that you’re in kind of a treatment gray area. It occurs to me that a low dose of a daily basal insulin might help attenuate the post-prandial spikes, which might attenuate the subsequent crash where the pancreas is over-reacting to the stimulus. I’m not a medical Dr, so that’s just a thought, might be worth asking your endo about.

ETA: I had started this reply before you posted and only hit publish after, so didn’t see you were on somewhat the same wavelength. Seems like it’s worth at least asking about.

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In theory what you are thinking may be sound but the reality is that injected insulin at mealtime is not a good first stage response either because of the delayed action time of even the fastest analog insulins.

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Thanks for your replies and advice!

I went to the Endo this morning, and she actually thought my numbers were great. She thinks that me being on the super low carb diet…( She wants me to stay 25 g of carbs or less per meal, which is very difficult!) is helping me. My c-peptide was 0.3 first visit and is now 1.7…still on the low end, in my opinion. She thinks that if I get on a probiotic and eat more yogurt it might help improve the lactose intolerance. I didn’t go into it with her, but I have actually had trouble after eating yogurt, even though yogurt is supposed to be super low in lactose. I also sometimes have trouble with hard cheeses, even. I am just super sensitive.

She said that the anti-neutrophil antibodies is the test that she intended for them to run ( for the islet cell cytoplasmic antibodies ) but everything I have found seems to say that that is more related to conditions like vasculitis. I only had one of the antibodies run other than that, which was the gad65.

She said that I definitely have reactive hypoglycemia, but that it is pre-pre-diabetes, and nothing to be concerned about at this point. ( I had just reminded her that my father was diabetic before he died of kidney disease, but I don’t know if he was type 1 or 2 because I didn’t grow up around him).

I told her about my blood sugar going up to 230 after the ensure. Rather than her taking a step back and realizing that my blood sugar went up to well over 200, all she did was shame me and get on to me for having drunk it in the first place. She said that I don’t need to eat like someone in the hospital, but I need real food. I tried telling her that it was late at night, and that I had every intention of eating a protein, but just fell asleep. I finally just said “it was a treat.” Her response was that it was a very bad treat and that I should never have it again. Well, I figured that out, but it just made me aggravated that she thought nothing of the fact that my blood sugar was well over 200.

She said she’d see me back in three months, and at that opportunity I asked how I should contact her if I have a question. I asked her did she prefer a phone call or email. Her response was that “you’ve got to realize people are emailing me like crazy. I am a single mom, full-time artist, and a and full-time doctor so unless you have an emergency, all questions will be discussed at your office visits.”

And to add to my above update, I’m sitting here at my desk at work about to cry because I got so very hungry again within two hours of lunch! Im soooo hungry right now…I’m mentally ok, though, so don’t worry! I just don’t know the best way to handle being so hungry so often. My lunch had a mix of carb, protein, and fat, too. Chicken, avocado, leafy greens, ranch dressing, a little black bean/corn salsa, and a little rice.

It sounds awful for you. It doesn’t appear to fit the LADA profile and if you’ve C peptide it isn’t T1. Is it possible you’ve just got a slow reacting pancreas? I mean, it works because your sugars come down but they’re slow. Maybe a new type since we have discovered more about diabetes in the past few years. By the by your cholesterol level comes strictly from that produced by your own liver not from what you eat, and, chicken can have a higher fat content, even skinless, than a steak, so don’t give up red meat entirely. Balance is everything. As to carbs you can eat plenty of good types, those in vegetables, get to like raw veggies and hummus, or with a dip made from cream cheese and shrimp and those in slightly underripe bananas, not spotted, apples etc. To satisfy a sweet craving purée raspberries and mix with whipped cream into a mousse or melted 70 percent chocolate mixed with beaten egg whites and a touch of sweetener, chilled. Just some suggestions.

The shaming thing is kind of endemic among endos, alas. I’ve been lucky about that in recent years, but for my first 20 or so after dx I got a lot of it. With T1 the rule nowadays is “You can eat what you want, just bolus for it!” (as if), but in the olden times it was all about Thou Shalt Not and crossing a whole bunch of food you loved off your list (well, we had this thing called “exchange diets” but the insulins were so crude and the exchanges required so much to figure out and keep track of that I could never make much use of it). So getting yelled at by your endo kinda just went with the diagnosis. With T2 it’s all still about “lifestyle changes”—diet and exercise—which I think most people find very hard to do, and T2 is vastly more common, so the scolding mentality lives on. Your case probably presents her with additional stress, because it’s not clear-cut, so there are bound to be a lot of questions on your part and not so many clear answers on hers. But she doesn’t sound like a Dr I’d want to stick with if I could find someone better. I’ve been lucky in that respect–they aren’t ALL like that.

So, yeah, hypo-hunger. Those of us on insulin know this territory x10, because along with all the other fun stuff like your eyesight blacking out and your legs giving out, a bad hypo is accompanied by a savage, overwhelming demand to eat every thing in the fridge. For me this is where peanut butter is huge help. When I get that kind of hypo it’s being driven by exogenous insulin and dangerous, so I need to have some fast carbs in there (some honey on top), but the main thing is to satisfy the craving without going into good old BG Roller Coaster. PB is relatively low carb, and it’s impossible to eat the stuff very fast, so it helps slow you down, satisfying the need to eat eat eat eat eat while keeping you from going completely overboard until the feeling finally wears off.

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I had to wait for a coworker to get back from an errand…as soon as she got back I went to the car and grabbed a jar of good ol’ PB!! I ate at least one tablespoon, maybe more like 1 1/2 T. With it, I ate an oatmeal strawberry peanut butter bar that doesn’t raise my bg too much too fast—6g fat, 2g fiber, 3g protein, 26 g carbs. And now, 2 hours later…I’m hungry again. Not quite as ravenous as I was earlier, but hungry nonetheless.

She seemed to think it was LADA until the negative GAD65. My c-peptide has gone from 0.3 to 1.1 to 1.7, though it is still on the low side. From what I gather, she thinks that being on the super low carb diet has helped that. I wonder if eating low-carb is just giving my pancreas a bit of a break (?) Which also makes me wonder if it will be a long-term break, or if things might go downhill in the future. When she ran the GAD 65 test, her response was that she was looking to see if my pancreas might eventually quit working. I know I don’t need to borrow trouble, but it makes me wonder if maybe it’s just too early in the game, and in the future things may dwindle down more. Especially since reactive hypoglycemia can be a precursor to diabetes. I have read that GAD65 can be negative early on and then being positive as the pancreas slows down even more, as well as the fact that there are several other possible antibodies that could be implicated in this that she hasn’t tested for. Like I said, I’m not trying to borrow trouble… Just trying to understand and get the care that I need to be able to function reasonably well.

I would find a new Endo - they are there for you and your needs not the other way around.


That’s how I felt about it, but I thought maybe I was being too sensitive.

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In that case good old bacon and eggs or sausage. Protein smoothies with green veggies thrown in for the fiber and vitamins. There are keto or low carb protein mixes available, you would just have to find one you like that your digestive system can handle. Have something available at all times for you to snack on to keep away the ravenous hunger.

Do you have gastroparesis? Those symptoms sound like mild gastroparesis to me. I would get on a good digestive enzyme and both pre and probiotics. Have you tried goat milk or goat milk yogurt? My mom is lactose intolerant and she can handle goat products. Have you tried some other types of diets to see if your BG’s and stomach could handle them better such as plant based/low fat whole foods?

Also if my Dr. tried to shame me for ANYTHING I chose to eat (that wasn’t outright poison) that would be the last time I saw that Dr., any Dr. that doesn’t have time for you when you have concerns and you are struggling with health issues weather mental or physical should not be your Dr. That kind of treatment style would work for someone who just needs their Dr. to fill prescriptions but for anyone who is having ongoing unresolved issues it’s unacceptable.

I would also suggest you look into Afrezza. It’s an inhaled insulin that begins working in 2 minutes, reaches peak effectiveness in 15 minutes and is gone by the hour and a half mark to three hours depending on dosage size. Although good luck getting any Dr. to prescribe it for you since you aren’t fully diabetic yet and you would have to go through the prior authorization process to get your insurance to pay for it.

Thanks so much for the suggestions/advice! I will definitely make us of them!

I had a gastric emptying study done about 1 1/2 yrs ago. No gastroparesis…I actually emptied fairly quickly. I was told it was normal, but my stomach was empty before the final hour so I didn’t have to stay the full four hours. I just requested a copy of the report so that I can see what it really says. Wondering if it could be an idiopathic dumping syndrome???

ETA: That still wouldn’t explain the highs, though. Last night I got up to 206 on a meal that 3-6 months ago would’ve raised bs to 160-170.

I could have written this myself! Your journey is almost identical to mine.

Sadly I have no advise yet as I’m still in limbo myself. Although my case seems slightly worse than yours. I have officially been diagnosed for one year as a type 2 diabetic. I always thought it was odd as I’m very thin, active and eat a very healthy balanced diet and am only 36 years old. I was put on metformin which brought down my A1C for 3 months, everyone was happy, except me. I asked to be tested for LADA reluctantly my endo agreed to the tests, but they all came back normal. My endo recommend I try to eat some more carbs. I did that and my numbers shot through the roof (I went from eating less than 30g carb per day to less than 75 g per day, so still very low). They doubled my metformin and my next A1C was good so everyone was happy again (once again expect me as I had gone back to very low carb less than 30g per day). My next A1C will be done in about a week and I am confident it is very high again.

My endo thinks I have a form of MODY and from my research I agree that sounds like the best fit. Unfortunately the only way to diagnose which MODY is through genetic testing. I was referred last January and still don’t even have an appointment booked!! I’m hoping with my next high A1C my endo will start to give me the medication as if she was treating MODY and maybe that will actually do something!!

I 100% get your pain and frustration. I am doing everything within my power to stop my blood sugars from rising and nothing is working. And my doctor’s don’t seem to care (or at least not as urgently as I would like)! When I was diagnosed I also lost a lot of weight. My weight has now stabilized but similar to you I think that’s because basically I allow myself to eat whatever, as long as it’s low in carbs! I’m also hungry all the time! Despite eating lots of healthy fats, protein and vegetables. The peanut butter trick works sometimes, or a handful (or 2) of almonds! But within a couple if hours I’ll be hungry again!

I am so sorry you are going through this. But I am also comforted to know I am not alone on this roller coaster ride!

Please feel free to reach out if you need to vent! I hope you get some better answers soon, the hardest part is just not knowing what’s going on!

Thank you for sharing your experience! Like you, I’m sorry that you are going through it, but it helps to know someone understands. And I know there are many, many people here that understand. I have already in such a very short time found this community to be so supportive and caring! Many thanks to all of you!

I am glad for you that your doctor is starting to narrow down the possibilities, even if you haven’t been able to have a test yet. At least he is going in one direction, not just scattered with different ideas. But oh, how I know how difficult it is to not have a diagnosis for something, and be wanting the answers! I know there are some people out there that can just treat and move forward regardless, but many people do so much better if they have a name to put to the disorder. Something that you can put a name to. I hope that when you do go to the doctor next time they are able to run the test that you need.

I am starting to see that it seems with quite a few doctors it is a numbers game… It doesn’t matter to some (not all, I’m sure!) doctors how much you enjoy what you eat and your lifestyle, as long as the numbers look like they want them to. I’m sure there are some good doctors out there that are not strictly numbers focused, so I don’t want to lump every doctor into that description.

It is so nice to have a place where I can vent my frustrations and also get advice and support!