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14 yr old daughter inconclusive tests

T

Tannalla

New Member
Relationship to Diabetes
Type 1
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She/Her
Long story short - I am a T1D and recently my 14 yr old daughter had an unrelated blood test during which they tested her HbA1c. The doctors phoned us concerned with the result and we were advised to attend the local hospital for further tests. We have been monitoring her sugars and they haven't dropped below 8 once over the weekend but she has no ketones. Her fasting was 10.4. She has been given the autoantibody and C-peptide blood tests, both of which have come back inconclusive. One set of doctors have said type 1 because of my history and her age but the diabetic nurses we saw said type 2 because she isn't really displaying any other symptoms. She is taking it all in her stride but I am stressing out with the 'up in the airness' of it all. All the medical people have said that they aren't overly concerned as she is obviously not ill with it and are happy to take their time to get to a proper diagnosis but it is driving me to distraction. For me I was very sick at diagnosis so it was clear I was type 1. Anyone else had experience of high HbA1c and inconclusive tests and can advise a stressed out mum. We do see the consultant tomorrow but was hoping for some guidance/reassurance.
 
How frustrating and worrying @Tannalla ! I suppose the good news is that it’s been spotted and is being investigated. I’d be asking if this could be the early stages of Type 1. It can take a while for enough of the beta cells to be destroyed for Type 1 to become overt.

What’s her blood sugar like after meals? What was her HbA1C? And what’s the highest blood sugar she’s had?
 
HI Inka, thank you for your reply. Her Hba1c was 59 so not crazy scary high, her post meals have been between 11 and 14. The highest finger prick test over the last few days was 14.2. So again not scary high but obviously not right either. She has had a cgm on today so I'm going to have a look at that when I get in from work to see what it's been doing today.
 
What are the actual numbers of the Cpeptide and antibody tests? It should usually be clear whether she’s t2 or not from the cpeptide.
 
So we saw the consultant yesterday. Her Cpeptide was within the normal parametes and the test for insulin levels was low. They haven't had the autoanntibdy result back yet but apparently this can take up to 4 weeks. They want to do a few more blood tests for other antibodies and to check for MODY bbut they have decided to treat as type 1. They have started her on a low dose of basal insulin and will monitor her over the next few weeks. I m gutted for her as I know how stressful this disease can be. She, however, is a champ and is taking it all in her stride.
 
Sounds like my friend's daughter, the ELSA study came back as her having all four of the main antibodies but when they tested her C-peptide it was over 2000. She also had hyperglycemia but was otherwise asymptomatic. They started her on metformin and a low dose of basal but literally within a few weeks she has progressed to overt type 1. Had it not been for the ELSA study it would not have been picked up until she became sick.
It's a worrying time as a parent for sure x
 
Sorry to hear that @Tannalla but at least you have some kind of answer. It also sounds like your daughter is getting excellent care. Look after yourself as well as your daughter x
 
I can't help with your stress or providing the certainty you need but what I can see is your daughter has a mum who knows the signs to look out for, has the gear and knowledge to use it, knows what to do if things change and if the worst comes to the worst and she does get T1D both understands and can teach her how to live with it.

As well as that she already has much of the knowledge she will need and knows from your example she can live with it, hence she is taking it in her stride.

Yes its a bad situation but you have got about the best team for that situation.
 
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