Early possible T1 diagnos

Hi! My daughter (3) is possibly going to be diagnosed as T1, but she either doesn’t fit the usual criteria or we have caught it early, but I’m confused really.. I went to the GP about constipation, she’d had some pain in her abdomen as well so the GP tested her urine for a uti - no uti but glucose +++, blood sugar was then tested at 15.7, ketones 0.1. Off to the hospital and they didn’t believe me when I said I was referred because she may be diabetic, they checked it then (a couple of hours later) and it was 12.5. A couple of hours after that it was 4 and her ketones were 0.7. They were confused and wouldn’t commit either way if she was diabetic or not and wanted to monitor her blood sugars for a few weeks + send away for autoantibody tests. Her hba1c was 5.4.

So fast forward she’s had some good days and bad days, some days her sugars never went above 6, other days they were over 12 after meals. She swings high and then low quite quickly, often from 4 - 12 - 4 within an hour. All the way she’s never had any classical symptoms of diabetes such as thirst, weight loss (although she’s always been a slow gainer), etc. All her antibody tests came back negative and her c-peptide was marginally low. Still don’t know what’s going on.. could she actually be diabetic, or is this just some strange toddlerhood thing? She eats a good diet, lots of fruit and veggies, minimal processed food really, very active. Just looking for support as the docs are being quite vague..

EllieM said:

Hi @svendenhowser and welcome to the forums.

Lots of virtual hugs. I can only imagine how horrible it must be to be in limbo without a diagnosis, but even if she does end up having T1, you will get through this.

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Thanks! I am in Australia yes.. I just hate being in limbo land, not knowing, but there is a silver lining that she might not be diabetic, which would be fantastic!

We are using the freestyle libre and checking with the glucometer when it’s over 10 (it usually reads 12+ when the libre says 9). We’re starting with the libre 2 tomorrow as it has just been released and is replacing the libre 1. I do have some urine tests and they are always negative (although they are past the 6 month expiration after opening, but not expired by date). Today after meals she was always above 12, so that’s a little concerning, but she doesn’t stay up there long and quickly comes down. I’m well versed with our funding (I’m an ex-RN and a current veterinarian) and tech and it seems fairly similar to the UK.

Her endo has been talking about starting an insulin pump with diluted insulin, but also non-commital on actually diagnosing diabetes. It’s frustrating! But I just need to be patient I guess, see what the next little while of monitoring brings.

Nicknackwack said:

Very interesting post and I have complete empathy - I found myself in a similar situation and with no classic diabetic symptoms. And I’ve just been told that I am neither T1, T2 or have LADA. Yet my BG can fluctuate from 7.1 to 29 in a day ! After lots of tests including a pancreatic MRI it was discovered that I wasn’t producing enough insulin or enzymes via my pancreas. So this puts me in a different category and means I am not diabetic. However there are similarities. And the simple fix for me is to inject insulin once a day regulating my doses every 5 days which in time will establish a mean average and give me control of my BG levels. I monitor my BG levels at least 7 times a day. Inconvenient but it only takes a few minutes each time. Diabetes teams and Endocrinologists don’t fully understand the reasoning behind the figures but what is known is that you can have high BG without being diabetic. In my case my Pancreas has ‘shrunk’ hence the lack of insulin production. I hope you get a diagnosis soon and fully understand your anxiety. It takes time to get conclusive results of tests which can be extensive before getting a diagnosis but you’ll get the answers for sure and monitoring is a good approach. One step at a time and lots of patience

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Thanks for sharing your experience. The endocrinologist thinks she is just early T1 with no autoantibodies (she said 15% don’t show antibodies at time of diagnosis). I’m not sure they’d want to go for things like an MRI with a 3 year old (it’s much harder to do these things on kids as they wont sit still, then potentially need sedation/GA, more risks), but I’m certainly going to ask whether she thinks there could be other causes other than diabetes. Also the treatment is essentially the same (insulin).