Adrenal Insufficiency Support Group

Just joined this forum and hope I can get some input! What does anyone know about the accuracy of high dose vs low dose adrenal stim tests? I have been struggling for years with fatigue/pain/low mood/motivation type issues. In 2007, due to some testing the indicated slightly decreased am cortisol levels (12 and 10) my pcp decided to do a low dose adrenal stim test. My results were as follows:

baseline level 14.8 ug/dl (at 8:45 am)

.5 hour level 14.5

1 hour level 11.0

an ACTH serum level was <5pg/ml range of <<46> (not sure what that means!Anyone know?)

He decided to treat me at that point with low dose cortisone (10 mg am and 5 pm) to see how I did. It really did help. However, not being an endo, he seemed to get nervous about using the cortisone so after 2 months he wanted to wean me off of it and retest. We weaned off for a month and them retested, again low dose stim, 2 months later. These results were

baseline level 10.3 ug/dl (8:50 am)

.5 hour level 7.1

1 hour level 5.8

at this point he decided to send me to an endo. The endo was not happy with the pcp, thought he shouldn't have done the tests, and said my second tests were low because the pcp had tested me too soon after the cortisone ended (2 months later) and that was affecting the results. However he agreed to do his own stim test. He did a HIGH dose stim test (3 months after cortisone ended) and the results were

baseline level 12.1 ug/dl

.5 hour level 28.7

1 hour level 33.8

He said there were no adrenal issues and that the low dose tests weren't reliable. That the Armour thyroid I was taking for my Hashimoto's should be changed to Synthroid (which I refused to do since Armour has worked so much better for me than Synthroid).

Since then my PCP (who was a bit insulted) has tried me a couple of times with Cortef. I ALWAYS feel better on Cortef (less fatigue, less joint pain, MUCH better mood) but he always seems to get nervous with it. Last December, after being off Cortef for a year, he retested my am cortisol level and it was 7.1 (I was feeling awful). He decided to put me back on Cortef at least until we got through the holidays. He ended up continuing it (my am cortisol level in March just missing my am pill was 9.6) until this June, when he once again decided to take me off. I weaned for a month and then we retested the end of October (about 3 months off). That am cortisol level was

4.9 ug/dl am cortisol range 6.2 to 19.4 (my potassium level was also slightly elevated)

He is rerunning cortisol, potassium, serum acth plus thyroid tests. I had a puituitary MRI in 2007 and came out clean. I also had a CT scan last year of my kidneys/galbladder area (ended up with a non-functioning gallbladder which was removed) and they said the adrenals looked fine.

I am thinking this may be a puituitary problem even though my Mri was fine. I have had a couple of concussions in my teens and had an ectopic pregnancy in my late 20's that I ended up having transfusions for. I am now in my mid 50's.

So I guess I am asking, how does this appear to you guys? Does it seem like my adrenal system is shutting down? Do you know anything about that low dose vs high dose stim test? Is the low dose accurate or not?

Any thoughts would be welcome!

thanks!

One particular topic was the high-dose vs low-dose challenge. He said....and true, I've read this is an argument used by some.....that there are methodological challenges resulting in accuracy problems using the low dose challenge, so it's worthless (er, his words). I think the lab dilutes it, and then it's such a small amount and you need to get it all into the blood stream, etc.... whereas if you're giving a supraphysiological challenge, there's no doubt you should've stimulated the adrenals but good....and you see or don't see an increase indicative of functioning adrenals.

But see, your results are a perfect example of why I think there's VERY REAL relevance to the low-dose stim test!!! (So thank you for posting, and for sharing your data!!!)

My baseline was/is between 6-13; I've had two different stim tests (over 9 ys apart), and the one hour peak was 16 for both. Old Endo who first put me on cortef didn't quibble on the specific deficit; he said "you don't feel good, have symptoms of AI, and have borderline AI results. Let's try cortef-10/5-and see how you do".....and tada, I felt So Much Better. Skip over a bunch of endos who thought the results were borderline and didn't make sense, and whom I ignored..... Now NewEndo did a re-test with High Stim, and he said "huh, I think it's simply mild SAI and you don't need to be on cortef. If you get hit by a bus, you probably will need cortisol, but otherwise you should be fine".

How the Heck does he know that my HPA works with everyday stress if he didn't test my adrenals with a low dose (ie physiological dose of) ACTH?! Your results of, er, no stimulation of cortisol following low-dose stim says (to ME! lol) that your adrenals are not functioning under normal stressful conditions. See, I tried telling him that any stress that comes my way, I fall apart (even ON cortef). But he said it's only a bus that will do me in.

It doesn't make sense to me how he can tell that when looking at a high-dose stim result. Please explain!! I might agree that I (and maybe you) are okay in the day-to-day-sitting-at-the-beach scenario, but not in real life, where stressors are around every corner!

Here is a great posting explaining the test, results and if it is primary, vs secondary. So many endo's forget that because the adrenal's are working doesn't mean the pituitary is.

hugs,

Trixi

I'm chiming in a bit late but want to reiterate - looks like you hooked up with one of "those" endos who doesn't have time or interest in learning about AI. I think what was banging around in his head was that you were on a steroid and that possibly induced a secondary adrenal insufficiency that was caused by the steroid use. But that is entirely negating the lab values that caused your gp to give you the cortef in the first place.

I would try to ask around and see if someone can recommend an endo to you. I myself had to go through three before I found one who would listen and I actually believe HE only listened to me because (A) he knew and respected me from another setting entirely independent on his medical practice and ( I was near crisis so it was clear and obvious that I was in trouble by the time I saw him. Unfortunately AI is rather rare - he commented to me I was the only person with hypopituitarism that he has ever seen - so many misunderstandings occur. Docs are also very "all-about" the lab test result and too many of them do not match symptoms with lab readings. I remember asking one of the earlier endos I went to why my cortisol was low and he jumped down my throat, "What, do you WANT something to be wrong with you?"

Good luck and keep us posted on your luck finding a new doc. In the meantime you're lucky to have a pcp who listens and cares enough to prescribe.

Deb