I developed "Chronic Fatigue" when I was 19 years old. I have never been able to get any doctors, except one to diagnose me with it. I went from 110 pounds to 250 and have been pre-judged as a "fat" person for years.
My son has salt-wasting CAH, and I had heard that Carriers could have symptoms,so I have begged my docs to do the ACTH stimulation for years. They refused because I am fat, they told me that if anything I would have cushings.
My AM Cortisols are always low "normal" and my thyroid was always on the upper end of "normal". They tell me to take an antidepressant and send me on my way. I never got anyone to listen to me. I finally found a doctor who wasn't scared to order tests, and she ordered lots and lots of tests (30 tubes). To check for human growth hormone, you have to get an IGF-1. This is not a definitive test, but if it comes back low, then there is a likelihood that you have a problem. Then they have to do a stim test to see if it is truly low.
They also did a cortrosyn test to check my adrenal function, and I am not producing ACTH in the brain which signals the adrenals to produce cortisol. So even if her AM Cortisols are "normal", insist on a stim test.
My thyroid was also pretty elevated, so I am now on thyroid. Human growth Hormone is next.
I have literally been dragging myself around for years. I own a business and I have missed a lot of work. My clients all think that I am a slacker, and if I had a really stressful day, it would kill me. It is awful to have fatigue. If you aren't emaciated from a wasting disease, nobody thinks youre sick.
There are many reasons why your daughter could have fatigue. I suggest having someone look at her viruses, bacteria, hormones, inflammatory markers, immune markers, vitammin B and D, anything they will do. Unfortunately most docs don't or won't order that kind of testing. I would suggest the fibromyalgia and fatigue centers. I go to a doctor who previously worked for them and she is really good.
I flew from Alaska to Washington to see her.... I am also going to the pituitary center at OHSU to a neuroendocrinologist. I hope this helps. Get her help before she loses the best years of her life like I have.
