Pre-symptomatic T1D

As many know now, my daughter is 23 months and waiting on acceptance into trial nets research program. She needs to be at least 30 months old before they can accept her and check for auto-antibodies. In the mean time we have been monitoring occasional blood sugars, mostly fasting 3 days a week. On the days were her fasting is elevated we continue to check a few more times during that day. We have found several really elevated glucose readings, first endocrinologist didn’t even want to talk about, she out right refused to look at the glucometer report, we asked for a second opinion. Our second opinion will be at the children’s hospital, 3 hours away but they wanted repeat lab work, repeat A1C and repeat fasting glucose. My question is, at what point does an increase look like a problem? My daughter was 4.8% July 16th than repeat on 09/26 was 5%. Its definitely higher within only 2 months but still within the normal range, is the increase concerning or only the actual number it self?

The A1c test can vary from lab to lab and even at one lab from one time to another, even if BGs are the same. When I was in a clinical study at Joslin and the end point was A1c, they sent the blood to several labs and used an average.

So a steady increase from 4.8 to 5 to 5.2 to 5.6 would suggest declining beta cell function. But 4.8 to 5.2 might go back to 4.8 the next time.

How elevated are her fastings?

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Her fasting glucose vary day to day, for the last 2 weeks they range from 85-99 with the occasional 100-115. During the month of August they were 95-115 same with July, but the estimated A1C I got from her contour next machine was close to the lab result, it estimated 5.18. Her sugar is markedly more elevated then when the problems initially began back in June

Kids can change faster and usually do. With an adult, me, and LADA it was a slow uphill climb. One year from 5.6, then the next 5.9 etc.

So a slow uphill climb means the decrease in insulin. But kids usually change much faster, however most people aren’t finding out about the Bg’s until the child is sick. So maybe more kids have a slow incline at first. But watch for the sudden change.

Always get a second opinion if you are uncomfortable with the doctor, I am glad you are doing that. The children’s hospitals are usually more thorough and hopefully you can have a better discussion with them about what is going on.

I agree, we regret not coming to the children’s hospital when problems first began. Her original Endocrinolgoist told me she wasn’t diabetic and was fine. I would have loved that answer except she never even once looked at the glucose report I had for her, a glucose of 275 is not normal ( we had several readings of over 200). My sister is a T1D, when her sugar gets that high its panic time for my mother haha. Thank you for your input tho.

Thoughts please: we just had a repeat a1c because we started seeing a new doctor and he wanted his own set of labs… A1C results below… any thoughts
7/16: 4.8
9/28: 5.0
10/24: 5.1

I know a slow rise could indicate a decrease in beta cell function which matches our higher fasting glucose levels. They started in September as 80-90 now they’re more 88-100. Any thoughts

@Mommy_of_2

I think those A1C’s are remarkably consistent for a young child who’s likely starting to eat and discover more food choices. I don’t think there’s any reason to be alarmed.

I’m T1D and my last 3 A1C’s also varied, but only because of my doctors veiled threats to “raise my A1C or else”. So I did what any intelligent person would do, I added some carbs to my diet and gamed the system.

Dec '18: 4.7
May '19: 4.6
Aug '19: 5.1