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Please help Understabd ACTH test results
Hello would ypu suspect i sm AI? I had a major car accident recently and have been symptomatic since. My labs showed me to have low blood cortisol number 8.8 uh/ dl at 8am. This was my blood cortisol baseline before my ACTH test. 30 minutes after the injection, my blood Cortisol went up to 40. Over 4x the baseline. Any feedback is greatly appreciated since I won't see my endo for 3 weeks .
BTW with a HIGH stim test = Cushing's syndrome and perhaps there is some overlap in symptoms.
what type of symptoms have you been having? I was originally diagnosed with SAI and central hypothyroidism and multiple endocrine issues. I was seeing an endo who sort of seemed like she knew what she was doing, but she ended up being incredibly unorganized---when i mentioned this to other doctors--they usually said they had heard the same complaint about her, and one of them had actually been to her, I think.
I saw another endo who was supposed to be one of the "best" in working with adrenals in the Northwest---HA!! The guy dropped my HC right off the bat withou even doing any blood work of his own, they made me a follow up appt. at 6 weeks--but didn't tell me, he continued to drop my cortisol and I was told he would probably drop take me off of thyroid once i was off the cortisol. He was basing all of this on the fact that I had been given a short-acting steroid in each of my heels in the weeks before my Stim test----somehow he missed the blood work that showed my cortisol and ACTH were almost bottomed out before the shots.
I've had two separate doctors tell me that they did not believe that the shots would have shut my adrenals down. My follow up appt. was with a PA who looked about the age of my oldest daughter, and they used a non-fasting cortisol blood test from two days before as their baseline for a stim test they did in their office--non-fasting, at approx 11:30 am---with no baseline ACTH. My non-fasting blood cortisol from two days before had been 18.6 and I went up to 23, or something in that area. No idea if I had adequate ACTH---all it showed was that my adrenals responded, a little bit, to the stim agent--it didn't double, and it was already close to 20---have no idea what their test was looking for and they never took a second draw. PA was gone to lunch when I said I had some questions. I asked if they were going to test for anything else, they said "no, because this was my presenting problem"----I didn't come in with any one particular presenting problem---I came in with multip[le issues---and they chose the presenting problem they would not run any other tests, even though I had symptoms.
Fortunately, they were hospital affiliated, and they had a customer relations person----I had already payed my co-pay---but I ended up not having to pay another penny to them---and the doctor had to be checked out by some sort of medical board to see if his treatment of me was appropriate.
Just wanted to give you an idea of what kind of things you can run into with endocrinologists---they are notorious for not keeping up to date with the most recent info in their field.
I finally flew from Idaho to Connecticut to see a doctor who specializes in balancing the endocrine system. he bases thyroid treatment on symptoms instead of blood tests. he ran a zillion blood tests on me---things no one has tested before. He will do blood work every 3 months for the first year to tweak things---and tells me to be patient, as it can take up to two years to balance the endocrine system. Also, he does not go by "lab normals", he goes by levels for optimal health. He also only supplements the things I am deficient in. I am on a number of supplements and also NP thyroid and HC.
I haven't improved my diet yet, like I need to, and I haven't gotten myself on a good exercise program---and i still have some blood work that I haven't managed to get done yet---so there is still a lot on my part i need to do.
It really sounds like you need to have a lot more testing done before any conclusions can be made.
If you are interested, I can give you a list of everything my new doc has tested. I think the only test rumpled mentioned that my doc has not ordered is renin---I don't think my aldosterone has been tested yet--but it is on the order for the sex hormones that have not been tested yet.
Just giving you a bunch more to think about.....
I saw another endo who was supposed to be one of the "best" in working with adrenals in the Northwest---HA!! The guy dropped my HC right off the bat withou even doing any blood work of his own, they made me a follow up appt. at 6 weeks--but didn't tell me, he continued to drop my cortisol and I was told he would probably drop take me off of thyroid once i was off the cortisol. He was basing all of this on the fact that I had been given a short-acting steroid in each of my heels in the weeks before my Stim test----somehow he missed the blood work that showed my cortisol and ACTH were almost bottomed out before the shots.
I've had two separate doctors tell me that they did not believe that the shots would have shut my adrenals down. My follow up appt. was with a PA who looked about the age of my oldest daughter, and they used a non-fasting cortisol blood test from two days before as their baseline for a stim test they did in their office--non-fasting, at approx 11:30 am---with no baseline ACTH. My non-fasting blood cortisol from two days before had been 18.6 and I went up to 23, or something in that area. No idea if I had adequate ACTH---all it showed was that my adrenals responded, a little bit, to the stim agent--it didn't double, and it was already close to 20---have no idea what their test was looking for and they never took a second draw. PA was gone to lunch when I said I had some questions. I asked if they were going to test for anything else, they said "no, because this was my presenting problem"----I didn't come in with any one particular presenting problem---I came in with multip[le issues---and they chose the presenting problem they would not run any other tests, even though I had symptoms.
Fortunately, they were hospital affiliated, and they had a customer relations person----I had already payed my co-pay---but I ended up not having to pay another penny to them---and the doctor had to be checked out by some sort of medical board to see if his treatment of me was appropriate.
Just wanted to give you an idea of what kind of things you can run into with endocrinologists---they are notorious for not keeping up to date with the most recent info in their field.
I finally flew from Idaho to Connecticut to see a doctor who specializes in balancing the endocrine system. he bases thyroid treatment on symptoms instead of blood tests. he ran a zillion blood tests on me---things no one has tested before. He will do blood work every 3 months for the first year to tweak things---and tells me to be patient, as it can take up to two years to balance the endocrine system. Also, he does not go by "lab normals", he goes by levels for optimal health. He also only supplements the things I am deficient in. I am on a number of supplements and also NP thyroid and HC.
I haven't improved my diet yet, like I need to, and I haven't gotten myself on a good exercise program---and i still have some blood work that I haven't managed to get done yet---so there is still a lot on my part i need to do.
It really sounds like you need to have a lot more testing done before any conclusions can be made.
If you are interested, I can give you a list of everything my new doc has tested. I think the only test rumpled mentioned that my doc has not ordered is renin---I don't think my aldosterone has been tested yet--but it is on the order for the sex hormones that have not been tested yet.
Just giving you a bunch more to think about.....
Agree with Kev... need all the numbers as you cannot tell how you did.
BTW with trauma, pituitary damage can happen but it is more likely if you had a concussion or were knocked out. Growth hormone would be the first to go and often that can mimic low cortisol in how it looks on a body.
One low cortisol test is not enough - why don't they do antibodies and other testing like sodium, potassium, renin, aldosterone etc to support the diagnosis - cortisol can vary a lot!
BTW with trauma, pituitary damage can happen but it is more likely if you had a concussion or were knocked out. Growth hormone would be the first to go and often that can mimic low cortisol in how it looks on a body.
One low cortisol test is not enough - why don't they do antibodies and other testing like sodium, potassium, renin, aldosterone etc to support the diagnosis - cortisol can vary a lot!
what was the bottom of what was considered normal for cortisol according to your lab? My baseline was 2.4 when I had my ACTH stim test done---the bottom of the lab was 5, so I was really low. I hit 9.6 for my first draw and only got to 11. 3 (or something around there) with the second draw.
My test specifically stated it was looking for me to get to at least 20. some test are looking for levels to double.
they sometimes expect extremely low levels to triple or guadruple----but I'm not sure that 8.8 is a level that is low enough to be expected to quadruple. What was your baseline ACTH when the test was done. If it was in the normal range, then it looks like your adrenals are working fine. were you fasting for your stim test? did they do a 60 minute draw?
I would not suspect secondary adrenal insufficiency with the information you have given----but maybe you have a little more info?
My test specifically stated it was looking for me to get to at least 20. some test are looking for levels to double.
they sometimes expect extremely low levels to triple or guadruple----but I'm not sure that 8.8 is a level that is low enough to be expected to quadruple. What was your baseline ACTH when the test was done. If it was in the normal range, then it looks like your adrenals are working fine. were you fasting for your stim test? did they do a 60 minute draw?
I would not suspect secondary adrenal insufficiency with the information you have given----but maybe you have a little more info?
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