Primary means the adrenals are at fault. That usually means the ACTH is higher because the pituitary is trying harder to signal the adrenals since the pituitary is not getting the return signal from the adrenals.
If the ACTH was not handled properly well, it would degrade and be low. Is your son tan or have more freckles or dark spots than others? Do his knuckles look dirty? That can be the ACTH. But if he is just getting the AI, then he may not have had the chance the darken much.
Secondary is when the pit is involved and the pit would not put out the ACTH to signal the adrenals to put out cortisol - in that case the ACTH would be super low and cortisol would be low.
thanks rumpled for your answer, I really appreciate the feedback abou this.
My son has tons of freckles. Bear with me on this but.... history might tell you something:
He was in an extremely stressful school situation where administrator would not even let him treat a 51 low blood glucose before lecturing him. He also was not allowed to get to the nurse to go home when his blood glucose was at 374 (due to an insulin pump malfunction) without taking a test first as his blood sugar rose to incredibly high numbers and he felt sick as can be.. the story goes on an on about that BUT during that time,
he went from 1 unit of insulin to 15 carbohydrates to 1 unit of insulin to 50 carbohydrates (thus hypoglycemia). During that same time his back is in extreme pain all the time, right above the kidney area, also, during that time, a dog bit scar that is about 2.5 inches in length became very dark - almost purple like. He also had a 2x2" area on his shin that was reddish brownish in color - it was a perfect diamond shape and it remained on his shin for 3-4 months (until we actually moved away from that school district), he has reddish brownish lines that come from the corners of his eyes - the worse he feels, the darker they are. Now, his back hurts almost instantly when he gets upset about something - extreme pain in two very distinct spots on his back.
He is softspoken yet he now doesn't handle simple stressors at all. For example, my daughter went to get the dog to pet him, my son told her no and she went anyway - he went to her room and swept her baptism ceramic frame off her dresser and it broke to pieces. She made a comment that he didn't like the other day and he spit a mouthful of spit in her face... no ability to handle stress.
So - now, i read that study that says that supposedly temperature is not truly a factor in the degrading of acth and then it went on to say that spinning it quickly is more of a factor (within an hour or so).
I am so confused. He failed the salivary cortisol test miserably. He has no energy typically. He had to give up playing his instrument because playing it makes him feel sick yet he is a very accomplished musician.
So - does the 18 baseline and 26 stimulated appear 'normal' in and of itself? With high stress when getting that test done, how could we rationalize the test?
Any advise would be appreciated, thanks again for taking the time to read all this... I am worried for him.
I came at this from having Cushing's (high cortisol) and having my adrenals removed. They do the same tests if you have high or low cortisol.
I would find the test completely botched but it appears they are going to go by the results. I wonder if they are going to call them normal as the 18 is in a normal range to start with. If you go back and look at other people's posts, it seems like every doc interprets the test differently and we still have not figured out the rationale. On the sites though it says you should not double and I have heard doctors say at conferences I have been to it needs to reach 32 or 34 (my brain - it is a dang sieve).
Has he has any 24 hour urine testing, cortisol blood testing at different times (that is, times that are diagnostic, 8am, midnight) and salivas over time? It is so hard to judge on one test or one set of tests.
There are also other disorders - but if you are at Mayo - you are not at a center of excellence to find them.
Thanks so much for the response. I am sorry I was not more clear. I am not AT mayo with him, mayo is the one interpreting the acth test for the hospital that my son goes to. I really should have made that more clear.
I have read over and over it should 'double from a respectable value like 20' - theforefore, it should go to 36. Then, I read that if you are at 18 or above you are absolutely fine.
Well, he was at 18 alright, 18 and screaming and crying - in other words, he was not at 18.
I am really not looking forward to telling this doctor all this.
Your advise and input is always welcome.
Do you know about aldosterone and what a stimulated number should be?
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