February 7, 2010
Question from Charlestown, West Virginia, USA:
My 10-year-old daughter was diagnosed with type 1 when she was four. A1cs throughout her diagnosis have run from 6.7 to 7.8. Three months ago, she was screened for hypothyroidism and the results came back slightly elevated. Two weeks ago, she was screened for the 21-Hydroxlayse antibody, which we found out yesterday was positive as well. She has now been diagnosed with Autoimmune Polyendocrine Syndrome type II (type 1 diabetes, hypothyroidism, and Addison’s disease). We have a consultation next week with our pediatric endocrinologist but our hearts and souls are devastated with this information. There is so much to read and learn. What are the complications/prognosis? Where can we find some good resources to review? Additionally, our pediatric endocrinologist is small, composed of maybe 1,000 patients, of which there is only one other with my daughter’s diagnosis. Can you provide a list of pediatric endocrinologist anywhere on the east coast that routinely deals with this situation?
A pediatric endocrine program of 1000 patients is actually rather large, not small. Thyroid problems occur in about 20% of kids with type 1 diabetes so all pediatric endocrinologists should easily be comfortable and have lots of experience with either mild or severe hypothyroidism, hyperthyroidism or just goiters and positive antibodies (Hashimoto’s thyroiditis). Usually, such mild compensated hypothyroidism as you describe is easy to remedy with just a single thyroid replacement pill once-a-day. Follow-up and adjustments for growth and puberty changes are also fairly straightforward and mostly involve periodic blood testing added to what is done anyway. The positive adrenal antibody (Addison’s disease) is only in about 1% or less of type 1 diabetes patients; this is rather rare. If there were only a positive antibody and no adrenal symptoms, and if the cortisol levels were normal, then no treatment would be needed but periodic follow-up and awareness of symptoms in case things change were needed. If abnormal cortisol levels or signs/symptoms were present, then hydrocortisone replacement and sometimes fludrocortisone as well would be needed. Almost always, this, too, is straightforward to treat and monitor. So, my best advice would be to discuss this in detail with your pediatric endocrine/diabetes team. Usually, it is not necessary to travel elsewhere unless there were specific problems arising.