MaryMy son is a 10yo SWCAH. His story is similar to the description given by Carol above. He was always tested in the afternoon a couple of hours after his last dose of Cortef. The bloodwork showed that he was under good adrenal control. However, he began to have severe mood swings, depression, lethargy, inability to stay awake, etc. His doctor at the time refused to do more labs because he had had some taken recently....the "problem" was accredited to "problems at home" The docs didn’t believe me when I told them that things were good at home, they thought he was just acting out. We sought help from another endo. who immediately increased his dose and ordered a 24-hr. urine. Lo an behold, his moods, energy level and motivation returned to normal.
Carol, Andrew’s current endo. is also a fan of 24-hour urines. I am sure we are talking about the same great physician! I don’t know why other endo’s don’t just do the 24-hour urine collections, just to be sure. It saved my sons life! This doc found out that the Cortef was too short acting and he was going in and out of adrenal crisis, between doses. Pretty scary, huh?
Push for a 24-hr urine and occasional a.m. blood work. It can’t hurt.