My feeling is that generally the negative is wildly overrepresented online. The test was almost represented by the endocrinologist as not urgent.
Let me throw the whole story out there: the situation that drove us to the endocrinologist was blood work that showed all her hormone stuff in the normal range, except her DHEA was really high...like 896 (if I remember correctly, the normal range topped around 400, =/-50). When the endocrinologist ordered labs, she ordered DHEA-S (a different thing), and it came back normal. However, the question remained, 'why the greatly elevated DHEA?'
DD has been going to doctors all summer...gyno, endo, ortho, rheumatologist...symptoms of joint pain and fatigue on top of longer-standing depression and anxiety.
I'd be worried about her generally, but I'm concerned about her senior year of HS (she's taking rigorous courses and is hellbent on going to a top-tier school), her college aspirations, career aspirations, etc. Currently most worried about what to expect with the ACTH stim test...any reassuring words?
Thanks in advance, and thanks for reading through all this!
She's concerned about feeling lousy during/after the test. Concerned about the IV. Doesn't like the doctor. Her #1 thing is she feels that if the test shows something "off", the doctor will want her to go on steroids. She's very figure conscious and I'm thinking that's her issue.
I don't know what to expect from the test. Can you help me out?
The steroids typically used in this treatment are low dose, and don't have the horrible side effects that the High dose ones do.
She obviously has something not quite right, and that usually screams autoimmune in nature. So no matter what they find she will most likely have to do a round of steroids at some point to see if she has improvement. If she is taking them and the fatigue, and joint pain, are better, she shouldn't be too concerned about the weight. For most the weight gain is temporary, it lasts only a little longer than the steroids do.
I myself have been struggling with figuring out what is wrong. My Dr's believe I have what is a seronegative (all blood tests for antibodies are negative) type of arthritis, similar to psoriatic. Since my labs are normal, and I only have one joint that has had a significant change they are blasting me with a 2 week round of steroids to see if it helps. If it does then I go on the same meds as someone with RA, or psoriatic arthritis.
Guess what, the joint pain is better, I haven't gained weight, and feel less fatigued, because it's shutting down that immune response.
Try to reassure her that it's much better to figure this out now, than when she is trying to keep up with college classes, and all the stress that can come with it.
Here's the nytimes article by one of the people interviewed, a mom who used a blend of regular and natural medical care to heal her son's symptoms with great success.