FUDiabetes

Pretype1 diabetic?

Has anyone here had experiences with pre type1 diabetes? My husband and FIL both have type 1. We found out that my 17 year old son has a high HbA1c of 5.9 and will go over 200 sometimes with very high carb meals. His fasting is normal. I did an at home OGTT with 75g of glucose and he was at 200 at 2 hours (so technically that makes him a diabetic?), but he was also doing low carb for 2 days before the OGTT. We are waiting on antibody and c peptide results from the lab.

If we stay under 30 grams of carbs per meal, his glucose levels will never even go above 115 during or after a meal. And they stay in the 60s-80s through the day (the low lows are also concerning and a sign of pre-type 1 I think) Fasting and overnight will be in the 70s (we have him hooked up to a Dexcom for now) But we just started doing that after finding out his high HbA1c, he was frequently having very high carb meals before than and we weren’t testing.

But eventual diagnosis seems inevitable. The endocrinologist wants to see him in 3 months to re-check his hba1c. I was looking into the teplizumab trial once his antibody test results come in to try and delay getting on insulin as much as possible. We will stay under 75-100 grams of carbs per day as he does really well on that, but how long will this last? It’s very worrying having this hanging over our heads. I had also enrolled DS in Trialnet when he was 5, but opted out of knowing the results because there were no treatments and knowing he was antibody positive would result in anxiety. I wonder if they still have those results?

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Sorry, I don’t have experience with pre-type1; by the time I was diagnosed I was in full blown BG 800+ DKA. That said, I did take my kids in for for Trialnet testing specifically so I would get early warning, which luckily they never tested positive for, and they stopped when they went to college. I’m sure Trialnet would still have your results; how many years was he tested?

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Thanks for posting @clara, interesting question. I don’t think without the antibody and c peptide results you will be able to determine much beyond the fact that your son has an abnormal (impaired?) glucose response to high carb meals. Really great that you were able to collect all that information. Makes our waiting until my son was almost dead downright irresponsible. It is probably true that he is at an elevated risk of developing T1 due to his father/Fil genetic heritage, but the insulin response issue could just as easily be an early onset Type 2. I do hope you get an answer soon. It is frustrating to play the waiting game.

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He was only tested once at 5 years old.

When I was diagnosed (A1c was 5.8), my doctor used the term pre-diabetes. I loathe that term, because it led me to mistakenly believe I was in a place where I could either prevent progression or reverse it entirely (was thinking of my mom, who had successfully overcome steroid-induced pre-diabetes - type 2). Now that wasn’t exactly the doctor’s fault, because I was the one misunderstanding and not asking the right questions, but based on other comments my doctor made in subsequent visits, I’m not entirely positive she didn’t also believe we could prevent progression. This led to me not being treated for another 8 months, not even monitoring my BG levels at all for 6 of those months, which as you can guess could have been disastrous, particularly since I got pregnant 4 months after my diagnosis. I’m still beyond thankful my sweet babe had zero issues despite my ignorance and lack of proper care (and that I was led to this forum - they helped me so much in those early days especially!).

That being said, technically my diagnosis was type 1.5/LADA, which basically is just a slow onset type 1 - depending on how early you’re diagnosed, people can stay in the honeymoon phase (still producing some of their own insulin) for years. I believe I’m likely still honeymooning 4.5 years after diagnosis because my basal dose is still very low and I am not in terrible trouble if I accidentally forget it for a day - my pancreas can somewhat take care of things for a (very) short period of time.

The main thing with LADA, though, is that the earlier you start treatment, the longer you can potentially slow progression. Taking the pressure off your pancreas, either with a low carb diet and/or insulin, helps to not burn it out so quickly. I’ve been on insulin for just over 3.5 years now, and I started at very low doses. Aside from during pregnancy, I wasn’t even on basal at first because my fasting numbers were perfect for a couple years. I was nervous about starting insulin when my numbers weren’t “that bad” (rarely hit 200 though that was with being careful w/carb intake), but it really helped.

I’m sorry you’re stuck playing the waiting game; that has to be frustrating when you know something is off with your child’s health.

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So he tested positive for GAD (10 U/ml) and fasting c peptide is 0.7, fasting bg is 100. For sure he is progressing to T1. But what is the protocol for early T1s? His blood glucose levels are under 115 the entire day, mostly in the 70s and 90s on a LCHF diet (under 75-100 grams of carbs per day, no high GI foods) The endo hasn’t been much help in this regard. She said to just keep an eye on his levels.
Is it better to start insulin early to preserve beta cells, or to wait as long as possible to prevent hypoglycemia? Personally I’d rather wait as long as possible, as hypoglycemia is scary.

Unfortunately, I don’t think anyone knows that answer to the first question. The fact that your son is 17 is good news in that the progression in older people appears to be slower than younger, but much will depend on whether your son is able to stay on a LCHF diet as he becomes a young adult. If he wants to eat more “normally” then insulin earlier might be the right choice earlier rather than later. He should certainly be educated enough to make this decision for himself in the near future if that is the path he chooses.

As far as hypoglycemia being scary, I am not going to argue with you on this subject, it is at times. But like all behavior, it is something that has to be learned and dealt with. Also, since your son’s body is able to maintain his blood sugar now, insulin would have to be really aggressively dosed to drive him dangerously low while his body can currently compensate.

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Speaking of hypoglycemia, he has been dropping into the 50s now and then, and I’ve read this is also a sign of progression. Maybe the endo can rx him a Dexcom based on those lows.
We’ll just try to ride this out as long as we can. Thankfully there are so many Keto and low carb alternatives these days, many of them my Type 1 DH has been eating for a long while. So hopefully the diet adjustment won’t be so drastic now and after dx.

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A Dexcom would be a great help, because then hypos need not be scary. The CGM alerts me when I’m headed low, I eat some glucose tablets (that I always carry in my pocket) and then I’m not headed low anymore. No emergency, no panic, no fear. Just see what’s happening and fix it before it becomes a problem. Ez-Pz.

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You will find diabetics successfully managing their blood sugar with both keto and higher than normal carbs. I am sure one of our members who runs marathons competitively, Eric, probably eats many 100’s of carbs every day, and yet he manages a non-diabetic blood sugar level. The Dexcom will certainly make things simpler to understand.