My daughter is currently in the hosp. Yesterday, her Cortisol level was 2.1 so the doctor ordered the cortisol stimulation blood test.
At 8am her baseline was 25.2. 30 minutes later it was 34.1, At 60 minutes it was 38. The doctor won't be around until tomorrow and I was just curious if anyone knew if this means her Cortisol levels are normal.
That is an iffy test. She started in the normal range but she did not double - so your doc may call it normal as she was in the normal range and she reached a magic number (some docs want a doubling after the agent, some want to reach a certain number), or he may not call it normal because she did not double after the stim agent.
It can happen that your daughter is on the *verge* where the adrenals are diseased (or the pituitary is not signally correctly, I am not sure of the source), but there is still some ooomph left for a bit, but that may or may not last much longer.
How are the sodium and potassium readings? How is her ACTH? Were any other tests done like renin, aldosterone, adrenal antibodies and stuff like dhea sulfate and other hormones?
Hi Rumpled....no other tests that you mentioned were done. She has been diagnosed with Cyclic Vomiting Syndrome for about 1.5 yrs. When she got to this hosp. on Tues. in another "cycle", they checked her Cortisol level which was at 2.1. That was on Thursday. Yesterday the stim test came back "normal" the dr. says. He said if it went up at least 9 points, then it's normal. I also spoke to her internist last night and he said when she gets out of the hosp. he's going to do the test again. I'm wondering if the numbers were "normal" b/c she was coming out of a crisis. Next time she has an episode, I'm going to have her Dr. order a cortisol test to see where her #'s are.
Yeah - see I would not call that normal for 9 points!!! I never ever heard that one. There is a magic threshold of a number and a doubling, but 9 points - please find another doctor.
It also can vary and cycle. She does need a lot of other tests. If you are close to a university (or even reasonably close), I would find a pituitary center and find a neuro-endo and get really good testing. I did cyclical vomiting too - after my adrenals were removed...
Get copies of testing. Does she have low blood pressure? If so, push salt!
Hi, her normal blood pressure is 95/65. When her episode started, she complained of a racing heart and then she passed out. When she came to, she had a horrible headache. We called 911. Her internist is going to run the test again. He's concerned bc her cortisol level should not have been at 2.1, especially being so sick. He said it should have been higher if her adrenal glands were functioning properly. I'll keep you posted.
I am only a patient but that BP seems a bit low to me. I know I feel like poo when mine is that low.
Get copies of her tests and find out if the sodium is low or both sodium and potassium is low. If both are low, then she is safe to drink things like tomato juice, gatorade, and things like V-8. If potassium is high, then she should avoid potassium rich foods and go for sodium only. Pickles, olives, salt tablets (I take a lot of these - go for unbuffered as buffered has potassium), sea salt on food and added to water or other drinks (sea salt tastes better) etc.
I also get horrid headaches when my crisis comes on - I also get confused which is crappy as it means I don't figure out oh I need meds... thankfully I usually call my husband and he figures out by my garbled conversation that he needs to TELL me that I have to take meds... I also have learned that when I am active I drink tomato juice as I drop sodium and potassium (but that is not the norm).
When she has been in the hospital they have had to give her both potassium and magnesium via I.V. Bc those levels are low. We're seeing her internist on Tues. and I know he's planning on repeating the stimulation test.
It would be good to stock up on things like tomato or V-8 juice (I hope she likes them) with full salt - when she feels lousy, she should drink them and it should start to make her feel better. I even add a dash of sea salt and lemon when I drink them. She should also salt her food and feel free to eat any salty thing she wants. I am overweight (I came at this from Cushing's - had my adrenals surgically removed) so I use salt tablets when I need a fast zap of sodium - it has helped keep me out of the hospital - my goal in life!
I also get a bit of low Mag - MAG-OX tablets are nice...
My daughter saw the Geneticists today and we told him about her 2.1 Cortisol level and her last hospitalization. She had previously been diagnosed with Cyclic Vomiting Syndrome and just recently PCOS. During this past hosp. stay, they checked her Cortisol level and when it came back at 2.1 the proceeded with a Cortisol Blood Stimulation test that they said was normal even though her baseline didn't double. The dr. we saw today said we need her to see a really, really, really good Endocrinologist. He said she needs to be tested for 17-hydroxyprogesterone, androstenedione, and testosterone. Also needs an ACTH stim. test. Is the Cortisol Blood Stim test different from the ACTH Stim test? He feels she may have Non-Classical Adrenal Hyperplasia.
I think they are the same tests - I am not sure, but I think the agent is Cortrosyn (or one of the stim agents) to imitate ACTH - and thus it may be confusing for cortisol since the test is for cortisol - if that makes sense?
CAH should be tested genetically - I have a link for help under the Adrenal insufficiency help pages - the thyroid page is linked here so we have all their health pages here - weird. I could not unlink so all our pages would be lost.
In case it is not CAH - and BTW there are about 4 types maybe more - make sure you get really good testing on other hormones too - and get copies of everything. Glad you found a good endo! Keep us posted!
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