I am a mother of a 20-year-old daughter with suspected Cushing’s. She was diagnosed with Hashimoto’s disease (with goiter) almost 4 years ago. Synthroid no help. Armour keeps TSH levels in range, but symptoms of fatigue, increased weight, etc, etc continue.
Noticed hump at certer top back, at base of her neck, some years ago, but had no idea about Cushing’s. Four months ago noticed that it was getting quite larger. Started research of this development, which of course, brought me to Cushing’s. So many other symptoms line-up with Cushing, including larger midsection/skinner legs, moon face, purple stretch marks on stomach, rapid, unexplained weight gain, extreme mood swings, extreme anxiety, etc. Great-grandmother, same body shape, died of diabetes. Grandmother, same body shape, recently diagnosed with diabetes. Father, same body shape.
When first diagnosed with Hashimoto’s disease, first endocronologist experience was so very, very disappointing. Prescribed synthroid, which did not work, then decided we should do a thyroidectomy. No signs of cancer. Doctor’s husband just happened to preform thyroidectomys. We did not have this procedure.
Found a general practicioner doctor who prescribed armour, which seemed to help somewhat, at least better than synthroid. With development of the hump and worry about Cushings, we have found a new endocronologist. In the last few weeks he has ordered the following tests:
1st test: Overnight Dexamethasone. Results: Cortisol (normal scale of 4.0 to 22 mcg/dl); her levels were at 5.4 mcg. So she was only slightly abnormal. Could not rule out Cushings.
2nd test: 24-hour Urine-Free Cortisol Test. Cortisol (normal scale of 4.0 to 50); her levels were at 42.1 mcg. Creatinine were slightly elevated at 2.60 g/24h (normal scale of .63 to 2.50).
Based on the results of the follow-up 24-hour urine test, endo states she does not have Cushing’s. Reading online, I found information that if urine creatinine levels are abnormal, which hers were, this invalidates the 24-hour urine test. The test should be repeated, right?
What do I do? Trust this endo? Or do I ask him to order more tests? If so, what test? Should I look for another endo (running out of these in western NC)?
She just has all these physical and emotional markers that hint at something more than Hashimotos. I certainly do not want her to has Cushings, but, if there is a chance she has this disease, then I want to know now, so we can address it as soon as possible.
Any help on interpreting these tests from people who understand this disease better than me would be so appreciated.