I was diagnosed with Type 1 during TrialNet, but my A1c is 4.7 and I only have high BG during the OGTT. (Or if I eat a bunch of carbs all at once outside of the laboratory, but I don't really eat that kind of stuff.)
Now that I know why I have felt the way I've felt when I've eaten a ton of carbs, I can see this dysfunction has been going on for years I've never been able to eat pancakes or oatmeal without crashing into a sweaty, shaky, ravenous place an hour later---now I know that feeling is a hypo from delayed insulin release.
I am curious what different doctors have recommended to you all. TrialNet doctor: recommends testing BG occasionally, and when I notice it's over 130 most of the time, to explore getting insulin. Regular doctor: didn't roll her eyes at me, but seems to think this is all very theoretical and is unlikely to actually be anything, and that I should stop looking for things that could go wrong.
I don't mean to sound impatient or like I want this situation to get worse, but I am just so curious! It seems obvious to me that I've been this way (with the hypos after eating oatmeal) for a long time---at least ten years.
What I am doing: testing occasionally. Not eating a ton of carbs. Go to TrialNet every 6 months. Sound like a plan?
Sorry, that sucks. I've read that it may be possible to delay LADA development by trying to control your BG very well. So definitely stay away from any meals you've found that makes you hyper then hypo. Maybe test every half hour for a few hours after eating some typical meals to see if you are bouncing up more than you know. Your A1c indicates you aren't but it wouldn't hurt to test.
Your plan sounds good to me. Did TrialNet offer you any prevention studies you could take part in?
Re the LADA business, I'm not really sure about the ins and outs of it. I was dx'ed at 16. I'd say that finding something through Trial Net like Jag1 suggests is a good idea but, other than that, stay on top of it and it sounds like you're doing that.
One of my maternal aunt's has had BG swings as you've described for most of her life. She was diagnosed as a child with hypoglycemia, she's now 56 years old. She eats a balanced diet, with frequent small low carb meals and snacks to keep her BG stable. She's still hypoglycemic after 50 years. I should see if she qualifies for TrialNet. TrialNet you have to take with a grain of salt though, they're still figuring things out and nothing is 100% ever. When my daughter was tested when she was a baby, through the TEDDY study which I believe was part of TrialNet, even though she was "Negative" they stated something along the lines that she could still potentially develop type 1 regardless of tests results, blah blah blah. So don't go on thinking you WILL develop Diabetes eventually, they could be wrong. Do continue to keep tabs on things, but don't make yourself sick worrying about it.
Hi katy. I think your plan is a good one and curiosity is not a bad thing in this situation. The other replies are right on, do keep testing and stay on top of this. The only things I would change are that you stop eating oatmeal, and test a bit more than occasionally. I hope you get nothing but "normal" results :)
It's confusing to me that I technically meet the criteria for T1D (antibody positive + BG >200 at two consecutive glucose tolerance tests*) but can, to some extent, control this by not eating carbs. It's like I'm living in an ad for something disreputable, "cure yourself with cinnamon" style!
*(I was told at TrialNet this is the definition/the criteria)
I definitely don't eat oatmeal anymore. But for a few YEARS I was having steel cut oats with walnuts and raisins for breakfast EVERY DAY. It took me that long to notice the connection between my "healthy" breakfast and the ravenous-shaky-sweaty monster I'd become by 9AM. Every. Day.
My non-D son is in a drug trial for the "we're 90% sure he'll be diagnosed within the next year" group; I didn't qualify because I'm classified as already-diagnosed. The TrialNet study I'm in is called LIFT & just watches what happens--I think it is an extension of the Natural History study.
I like your idea of frequent pp testing--I am going to try it. Thanks!
I hear your frustration Katy and I’m in a similar confusing diabetes boat. Went over 250 yesterday after eating some gummy fruits (as a reward for eating a low carb lunch, oopsie!), spilled a small amount of ketones and glucose but my doc keeps wavering, officially LADA and treat with insulin or is she still just impaired? I’m auto antibody negative but have low/normal c-peptide and insulin levels. I do have prandin but don’t like to take it, it upsets my digestion. I’d like to try a rapid acting insulin for carby meals but my a1c was 5.4 (it averages in my reactive hypos, sound familiar?) and fastings are below 90 so it’s wait and see what happens. There has been some deterioration of BG numbers recently (e.g. yesterdays “gummy fruit incident” in the past it would not have sent me so high). I can control ok if I stay low carb, but exercising rigorously to control is not going to happen, I’m underweight and too fatigued. Like you I also had the hypo symptoms for many years, even had to start carrying glucose tablets in my purse not realizing I was going high before low, just thought I had a low blood sugar problem of some kind. Duh.
I'm also playing the waiting game after being diagnosed through TrialNet about a year ago. I don't think much has changed for me in the past year. I heard the same thing about looking for numbers that stay over 130. I was very nervous at first and checked my glucose at least a few times a day, but I feel much less anxious if allow myself to just check a few times a week. I don't have hypo's to worry about, though, it's a bummer that you have to deal with that.
I'm going back to TrialNet for a mixed-meal tolerance test next month and I'm curious to see how that goes. It's comforting to me that I can get this extra information (MMTT's, more A1C results) from TrialNet. I live close to one of the centers and all of the scientists seem to be very interested in my blood.
I was hoping someone in the same situation would see me here! Isn't it a weird spot to be in?
If MMTT means what I think it means, I haven't moved on to that yet. Are you in the LIFT study? I agree it is a nice treat/comforting to get all of the extra data. I am still on the OGTT part of the thing (every 6 months), even though they give me severe hypos afterwards. (In one case a 50! Not so remarkable for our T1D kids, maybe, but for an unsuspecting newcomer...it was a doozy.)
From the study I know my C-peptide is "still robust," I am insulin sensitive, but my 2h post-OGTT number is higher every time I go in (TrialNet doctor says this isn't necessarily indicative of anything.)
Anyway--I'm glad to meet you & to know you're there.
Wow! I am so happy to read this--not happy for your misfortune, but so glad someone else is on the same kind of wonky path.
Are you in TrialNet? Do you have a D-family member that made you investigate your symptoms with an endo? I think my regular (primary care) doctor finds my TrialNet story to have a bit of a whiff of BS/maybe thinks it seems like I'm looking for trouble where there is probably none.
Nice to meet you too Katy, no I'm not in TrialNet, what is it exactly? I had symptoms, weight loss, polyuria, nausea...and was seeing docs for that. A random blood glucose of 198 started me down this path. I do have both juvenile onset and adult onset of insulin dependent diabetes in my family, I have one of the genes and other autoimmune issues like celiac as well. It's difficult being in the diagnosis "wonky" zone especially when you don't feel well. I never knew diagnosing, treating, and classifying diabetes was so complicated.
TrialNet runs lots of different studies on relatives of people with T1D. Parents, siblings, cousins are eligible to be screened for the autoantibodies that indicate the pancreas is being damaged. They also check for a protective gene. I think there are 4 or 5 things they screen for. If any Ab's are present, they invite you back for an oral glucose tolerance test. If your OGTT results are abnormal (I'm sure they use a less pejorative term), you might become eligible for a drug trial or other stuff they're studying.
Usually, people get screened, they have no autoantibodies, and that's the end. I only participated to keep my non-D son company at his screening. Then we were both WHOOMP!: autoantibody positive, protective gene absent, abnormal (or whatever term) OGTT results.
My T1D son was diagnosed w. celiac in the fall, so we're all getting tested for that too. It's quite a cluster of excitement!
I am going to try to find more of your posts. I have not been using tudiabetes for long but I bet I can do some kind of search and find out more! This topic is endlessly fascinating to me.
I won't rehash everything else that's been said, but I do have one comment about your "regular doctor", and it's this:
No one with a healthy, properly functioning pancreas spikes up into the 200s after an ordinary meal or an OGTT. Full stop. If your doctor tells you that this is "unlikely to actually be anything" then she needs to be either (a) further educated, (b) ignored, or (c) replaced.
It's not the LIFT study, I actually declined that one because I didn't want to do another OGTT at the time. I didn't like seeing my blood sugar hit 300 mg/dL. I thought it sounded kind of dangerous. They asked a little later about a different study that requires a MMTT, and I think I've finally worked up the courage, or curiosity, to try again. Maybe the MMTT won't be as bad.
I take that back, they convinced me to join the LIFT study after all, and I'll probably do an OGTT soon. I did the MMTT and had very normal glucose readings the whole time. This disease progression is so strange.
I have a similar story and am now 3-years post-diagnosis. My LADA was discovered at a very, very early stage during a physical. I had just turned 28. My fasting glucose was barely above 120 and my OGTT was somewhere just below 200, A1c was in the mid-6's. I was fortunate to have a primary physician at the time who had a subspecialty in diabetes. She ordered the antibody panel, which came back GAD+.
My doctors' (both initial primary and endo) recommendations were very similar to yours, which was to control the numbers with your diet, test once or twice daily, wait until your fasting numbers creep to 130, and then begin insulin.
For me, the 130-mark was regularly breached two months ago. After losing my awesome primary doctor to a move for work, my new primary care physician tried to put me on metformin, but I overruled him (based upon the prior plan and my review of the medical literature on the best course of treatment for LADA) and went to my endo for basal insulin.
I started with a very small Lantus dose (2u) which initially brought me down into the 110's with good post-meal control. However, either by LADA progression or the end of the honeymoon, the numbers are beginning to creep above 130 again and my post-prandials are, at times, a little high (but still sub-200).
The plan from here is to adjust the basal dose as needed to maintain fasting control and then begin fast acting once basal insulin is insufficient to adequately control the mealtime spikes.
Hope that helps!
Also, as for your regular doctor, flat out denying that your LADA is real(in the face of positive antibody testing and a failed OGTT) is unquestionably a mandate to switch doctors. Just be mindful that, even once you switch doctors, the reality is that most primary care doctors know nothing about LADA and similarly know nothing about the best course of treatment for LADA. That being said, a doctor who understands that LADA is real is a step in the right direction.
