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Early possible T1 diagnos

Discussion in 'Parents' started by svendenhowser, Aug 11, 2021.

  1. svendenhowser

    svendenhowser · Member

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    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..
     
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  2. EllieM

    EllieM Type 1 · Moderator
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    Hi @svendenhowser and welcome to the forums.

    I guess the good news is that she doesn't have the diagnosis yet, and you now know to keep an eye on things so that if she suddenly developed T1 you would get a diagnosis in time to treat it. Also, worst case scenario, if she has T1 it will upend your lives but the treatment for it is now so good that there is very little that it would prevent her from doing in the future.

    What are the doctors doing now, telling you to monitor?

    (As a T1 mother I used to occasionally get paranoid about my kids developing T1, but would test their urine rather than blood, as sugar passes over into urine at bgs greater than 10, so I always reckoned that a positive urine test would tell me if I needed to consult a GP. I don't know if this is an option for you, or whether the doctors want you to keep doing blood tests? Or are they letting you use a continuous glucose monitor such as the freestyle libre?)

    Can I ask where you are located? Am guessing not in the UK because of your time of posting. Though diabetes is the same the world over the treatment protocols and terminology can vary by country, as well as the availability and funding for diabetes technology.

    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.
     
  3. svendenhowser

    svendenhowser · Member

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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.
     
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  4. ert

    ert Type 1 · Well-Known Member

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    I'm sorry you're having a tough time.

    You need to also consider what causes non-diabetic hyperglycemia for example a urinary tract infection etc, etc.

    The c-peptide needs to be interpreted together with the fasting blood sugar. Lower side c-peptide of the normal range with normal blood sugars still supports that insulin production is normal as it's just a snapshot of what's happening.

    I hope you find some answers soon.
     
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  5. Nicknackwack

    Nicknackwack · Member

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    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 ;)
     
  6. svendenhowser

    svendenhowser · Member

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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).
     
  7. Nicknackwack

    Nicknackwack · Member

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    Deffo agree with you to explore other avenues and challenge the endo’s assumptions. You’ve come to the right place to find alternative diagnosis and people’s experience. And I agree with you about MRI’s and 3 year olds - they wriggle lol ! Lots of research helps and monitoring for now is the way forward. Good luck
     
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