Possibly LADA, endo appt tomorrow

Type 1 and LADA
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Hi everyone. I’m new here and have already learned so much from reading your posts and linked articles. I am suspecting that I’m in the early stages of LADA and have my first endo appt tomorrow.

Here’s the back story and I would appreciate your opinions and insight. My dad has T1 (diagnosed at age 13 and now 58). I am 31 and had my 4th and final baby 11 mo ago. My OGTT at 28 weeks came in at 85 at the 1 h mark and things were good. I gained the usual 30ish lb, topping at 160lb on my 5’7 frame and was surprised to deliver a 10lb 13oz baby (ouch!). The other 3 were big (9.5lb), but not THAT big. The baby was born big, but over just a few mo, he settled into the 50 percentile for weight and 75 percentile for length…right about where my other kids were.
After he was born, the weight just fell off for me. Usually I would drop most of the baby weight, then I’d have to clean up my eating (major sweet tooth!) and exercise to get back around 130-135lb. I realized in November, 5 mo post partum, that I had dropped to 125lb. despite eating a ton of food and pretty much whatever I wanted (lots of treats and ice cream). I was also having headaches daily and exhausted pretty much all the time, but I attributed that to life with 4 small kids (6,4,2, new at the time). I kind of thought the weight loss was from breastfeeding pumping my metabolism up, even though it wasn’t my normal.
Fast forward to late Feb when I realized that I was down to 120 lb and people were asking if I was okay and mentioning how thin I was looking. In mid March, the week before I was scheduled to see a Dr, we were at my parents and I had my dad check my glucose. 2 hours after breakfast I was 76 and feeling really hungry and shaky (that’s the norm for me…I have to eat every 2-3h). So I had a junky snack of cookies and fruit gummies, then a big lunch (higher carb than I usually have) and birthday cake. I felt awful 2 hours later and my glucose was 46. The next day I bought a meter (ReliOn Prime from Walmart). I had a pre meal reading of 78 (2 h after a snack), then had pizza and sweet tea…probably 4-5 slices and 1 glass of tea. One hour later I was 159, two hours was 179, and three hours was 123. Obviously eye opening for me. I monitored post meal levels a few days and figured out that sweets (donuts, granola bars, etc) caused quick spikes and pizza/pasta caused longer lasting spikes.

I saw my new Dr a few days later and she told me those levels were normal, but ordered an a1c, CMP, thyroid, etc because of the weight loss. I assumed the a1c would be normal and knew my fasting was fine, but didn’t feel like that addressed my actual issues. A1c was 5.3 and fasting was 83 and all the other labs were normal. She declared me healthy and said to enjoy the high metabolism while I could. I mentioned LADA and she all but rolled her eyes at me, but agreed to a referral to an endo to appease me. My appt is tomorrow.

In the last month between the referral and my appt, I had donuts and spiked to 192 and also had chicken parmesan and garlic bread at a restaurant and hit 202. Other than that, I’ve been watching what I eat more and avoiding high carb meals and desserts. I found I can have a piece of chocolate here after a meal and there and be okay (120-130s). I am constantly hitting the 70s and feeling shaky, weak, cranky, and hungry about 2 h after a meal, no matter what I eat. I guess the hypos are confusing to me. Any insight there?

I’m also a little nervous that the endo is going to brush me off. I’ve got my list of desired lab tests (GAD, etc) and my history and data written out, so I’m ready, just nervous.

Any other tips? Thanks!

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Welcome. I certainly hope you don’t have diabetes…

My best advice would be to trust in your endo-- if they say you don’t have diabetes, don’t be disappointed! That’s good news, it’s what you should be hoping to hear! But you are going through the right channels to be properly evaluated for the concerns you have. It’s difficult to know what to make of your occasionally elevated post-prandial blood sugar levels. It’s the subject of wide debate what “normal” blood sugar and metabolism actually means. M

But please do keep us posted with how it goes…

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One of the characteristics of early stage LADA is more or less wild swings as the pancreas sputters, sometimes running out of steam and then at other times going overboard with a surge of insulin. So it’s good that you’re checking for that.

But of course that’s only one of a myriad of possibilites. A qualified endo is better qualified to solve this kind of puzzle than is the average GP, so it’s also good that you’re going to see one.

As Sam says, there is wiggle room in the definition of what’s “normal”. Even so, post prandial numbers in the190 to 200 range are definitely outside the envelope. So something metabolic is going on. It’s time to get the experts involved to figure out what.

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Sorry that you have to deal with this!

It’s great that you have been monitoring what you eat and testing to see how it affects you!

Here’s hoping that the endo is supportive and cooperative and does the tests you are looking for!

Best wishes!

marty1492

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I would be concerned, as you are, that you might have LADA. As David says, your story sounds like so many early LADAs, and unexplained rapid weight loss is a symptom of uncontrolled Type 1 diabetes. Within the medical system, we have to be our own best advocates, so with the endo I would really push for appropriate testing (autoantibody testing). Best of luck to you, let us know how it goes!

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Thank you all for your comments and encouragement! I will update after my appointment.

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Following up here after my appointment. I was scheduled with a NP at a large endocrinology practice. The wait time for the PAs and MDs was a couple of months. My fears came true when she told me that my 170s-200s were normal after a high carb meal or snack. She also said I shouldn’t feel shaky and weak if my readings were in the 70s (but sorry, I do). She suggested the weight loss was solely from breastfeeding, which I also did with my other 3 kids and didn’t drop below my pre-pregnant weight. So I had to push back some. When I mentioned LADA, she backtracked a bit and agreed that it would be wise to order some tests. She left the room to write up the orders and came back (I think she probably spoke with a Dr or PA in the office thankfully) with the following orders: c peptide, total insulin, insulin antibodies, ACTH, anti-GAD antibodies, CMP, corrected calcium, cortisol, IGFI. These also include some tests for possible adrenal issues.
I will have those drawn fasting tomorrow morning.
She also decided to put me on a 7 day continuous glucose monitor (Dexcom) and I will keep a food log with that. Hopefully this will lead to some kind if answers in the next week-10 days.

Any suggestions on how I should eat with the monitor for diagnostic purppses? I have been avoiding sweets, white bread, pasta, etc. Should I push I a little to have the spikes recorded?

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Congrats, it sounds to me like you had a good and thorough checkup with some eval to follow.

You almost sound disappointed to not have diabetes! Smile, it’s a really really good thing to not be diagnosed with type 1 diabetes, trust me I’d know:)

I would just eat normally for you, whatever that is while on that cgm… and hope that your next appointment goes just the same!

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Uh, geez, I obviously don’t WANT diabetes, but I also don’t like being told that it’s normal to spike to 206 and feel like crap after a high carb meal at a restaurant. What I WANT is to be listened to and my concerns taken seriously. I half feel like she ordered the labs and put me on the monitor to shut me up. I got what I feel I needed in the end, so I’m pleased with that. Just frustrated with the process.

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If it were me, I would eat exactly as I had been doing so that the resulting measurements would be reflective of what brought me to the doctor in the first place. Otherwise you risk a parallel with the situation where the car malfunctions until the mechanic is actually there looking at it, when it doesn’t. I would want the measurements to tell me what is really happening under my “normal” circumstances so that therapeutic decisions could be based on real knowledge. $0.02, take it for what you think it’s worth.

And I’m sorry, but 200 is just plain not normal. Something outside the bell curve is going on and it’s prudent to determine just what. Those tests should help, a lot.

Also, feeling low in the 70s is not uncommon. If you took a poll among the members here, you would find that dozens, maybe hundreds of people react similarly. Every physiology is individual and every case is individual. There are no blanket rules for this sort of thing. If you have symptoms, you have them. What the next person is experiencing may be interesting but it doesn’t apply to you. One of the biggest problems we PWD have in dealing with the medical establishment is that they tend to have been taught one-size-fits-all rules that just do not fit reality in many cases.

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Thanks for your encouraging reply @David_dns. I will continue a normal diet, which is relatively healthy with treats now and again.

I am a RN (currently home full time with my kids though), but I didn’t bother to tell her that.

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Did the Dr lean more towards thyroid than LADA? it sounds more thyroid to me, My daughter had it after her second birth.

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I had the thyroid tests done with my GP in mid March and everything came back normal with that. I thought that could be the issue also.

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at worst I would say T2, staying high rather than dropping back would indicate LADA more. See what the tests say, but I think you will be ok and the weight loss is from somewhere else.

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Actually both T1/LADA and T2 present in exactly the same way. Loss of phase I response and sluggish response to carbs in meals. And both can have reactive hypoglycemia in the early stages. If you suffer severe insulin deficiency your blood sugar after a meal would go high and stay high without coming down (both in T1 and T2) and you would generally have very high blood sugars. I don’t think that is the case here.

Weight loss typically happens with blood sugars significantly over 200 mg/dl for extended periods of time (you can excrete large amounts of glucose) and where you actually have emerging DKA (your body starts to catabolize itself looking for energy).

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Hi Katie: Great job being your own best advocate! The nurse may have ordered the tests to shut you up, but heck, she ordered the tests. Very good! Keep us updated.

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That’s kind of how I looked at it, @Melitta! Frustrating, but at least it got done.

I’ve already seen some interesting things from the cgm. My fasting when I got up to nurse the baby at 4am was mid-90s…I can’t remember exactly. When he woke for the day at 7:15, it was also in the 90s, then he nursed and it dropped to low-mid 80s pretty soon after. That also happened when he nursed at bedtime at 7:15pm last night. I dropped from 100s to 78 very soon after and it bounced right back up to mid-80s until I had a snack a bit later. I knew producing breast milk used glucose, but it is interesting to see the pattern.

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Makes sense; milk contains the sugar lactose, which has to come from somewhere. But as you say, interesting to see the process in action.

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Well I’ve learned a lot from wearing the cgm for the last 5 days. I am really glad to see my glucose is stable throughout the morning, apparently no matter what I eat. I had a small amount of juice and a cinnamon roll for breakfast on Sunday and I went up maybe 20 and right back to baseline. For some reason, lunch and after is a different story. Any little thing that is sweet or higher carb sends it up to the 150-160s and then crashing down 2 h later.

I also didn’t realize I was having hypoglycemia at night. Two of the 5 nights I have worn the cgm I’ve been in the 60s-70s all night (and it’s alarming all night, thanks to the settings the endo’s office has it on). The first night it happened, I had a banana when it was 67, slept some, had some juice when it dropped again, slept some more, then had a banana when it dropped again. It happened again last night. I was up with the baby and had 2 swallows of juice, but just let it go otherwise. It came up for about an hour with the juice and went right back down into the 60s until I woke at 7. I can now see that the sweating and feelings of total exhaustion were hypos, not just being hot and tired.

Any input on the nocturnal hypos?
I am so confused by everything at this point. I hope the endo can tell me something useful from the data and lab results.

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I have to tell you, in non-diabetic populations a normal fasting blood sugar is generally considered to be about 70-90 mg/dl. Dipping down into the 60s may be either slight errors in the CGM/meter or you actually are dipping a bit low. And although we are told that non-diabetic blood sugars don’t vary they do in fact vary. And as you can see even these non-diabetic subjects had excursions above 160mg/dl and down below 60 mg/dl.

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