From Indiana, USA:
My daughter has had Addison's since she was seven years old. At that time, a doctor said her GAD was high, her insulin response (first phase) was less than 3% and she had a high risk of getting diabetes. This testing was done in a different state by an endocrinologist she only saw once. She does not have diabetes and has had no further testing. She is 15 years old now.
She has poor control over her blood sugars. When she gets ill, she is frequently in the 40s mg/dl [2.2 to 2.7 mmol/L], while after steroids (higher doses), she will be 300 mg/dl [16.7 mmol/L], then drop back down to the 40 to 50 mg/dl [2.2 to 3.2 mmol/L] range a few hours later (presumably when her insulin kicks in to counteract the steroid high). She runs high after meals but comes back down to normal ranges or a tad bit high, 120 to 140 mg/dl [6.7 to 7.8 mmol/L] a few hours later.
Should she be getting any other testing on a yearly basis? I have read about C-Peptides or insulin levels. Would these be helpful to keep an eye on her? What testing, if any, should she be having on a yearly basis? I do not want to offend her endocrinologist here by asking him if he is keeping a close enough eye on her. Is just an A1c good enough to watch her on a yearly basis (she does have that and is 5.6)? With her having such highs and lows a lot, I am concerned the A1c might not be telling us a whole lot.
It would be best to ask these excellent questions to your endocrinologist. Nobody really knows exactly what should be tested or how frequently. Were you in my practice with such glucose abnormalities - not expected with Addison's - I would suggest some detailed laboratory work periodically to include insulin levels, ICA, IA2, GAD-65 and ZnT8. C-Peptide is not useful since there is no insulin treatment. An A1c periodically as well is also helpful. Thyroid and celiac testing with antibodies, etc. may also be helpful. Most important would be periodic blood glucose profiling and detailed food analysis to see if this changes follow up needs. So, go back to your endocrinologist and ask for some clearer recommendations and rationale so that your family and endocrinologist can be on the same page.
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