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Addison's Disease Message Board


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I've decided to stop being treated like a child by doctors and I'm going to pay for some private lab work. I want to test my adrenals. What are some of the tests that I should get? I am getting an all day saliva test for cortisol, and I know that it's a good idea to have other things tested like testosterone and DHEA. So here are my questions:

1. Do I get DHEA or DHEA Sulfate tested?

2. Is there another name for the ACTH test? I noticed it's the one of the tests that is typically performed, but I cannot find it under any of the private lab's test directory?

3. Any other recommendations?

Thanks!
Wow! Usually each board has a few pros on it. I was hoping to get some insight. After much research and speaking to a doctor, DHEA Sulfate is typically the test one may want for adrenal issues. I posted this in case someone else needed/wanted to know. Thanks!
Hey,

The thyroid board is really active. This one is more silent. Many on the thyroid board have done the adrenal walk as well. You could post your questions there. I am new to this and had the ACTH.. which came back as high and the cortisol tests which were normal. I am not sure what is optimal for cortisol testing and thus am looking into it. I hadn't heard of the DHEA test.. but my IM told me to take DHEA, DHA, and EPA. So it is worth getting her to test me when I go back in to discuss my high ACTH.

I hope you get answers. I wouldn't say my MDs treated me like a child. They seemed to wave their hands and act like it was in my head. Well the migraines are in my head.. my other issues are in my neck.;) I am keeping an eye on your post. Feel free to jump in on mine as well. I have had to swap MDs 5 times to get those that will work with me. It is a rough ride. You are not alone. You should be able to talk your MD into prescribing the tests.. especially if you tell them you are going to go over their heads. I hope your MD sees the light. If not, you might want to consider MD shopping.

MG
Sorry I missed this. My pituitary endos test DHEA sulfate. I am on DHEA as my adrenals were removed.
I had cushing's disease and my ACTH was normal while my cortisol was frequently normal or elevated - I was cyclical pituitary in nature.
I know of others with Cushing's and they will have elevated ACTH with normal cortisol - but that can also be the case with Addison's - the feedback loop is messed up so you really need to find a doctor who is going to test frequently if you suspect high cortisol as you may be cyclical (and go high to low) or an ACTH stimulation test if Addison's is suspected. For instance, now that my adrenals have been removed, my ACTH has risen (last test 1801). So high ACTH can mean both.

I agree - do doc shop if you are not satisfied - no sense is being sick.
Thanks rumpled. Your post was very helpful to me as well. I will add DHEA to the list of tests I am going to ask for on Thursday. Man does the lab tech love me for needle practice. ;)

MG
Thanks MG and Rumpled!

I had my ACTH come back normal:

ACTH - 17 (6 - 48)

My cortisol was low though, but not enough to diagnose me w/Addisons. I plan on getting the DHEA S test soon. I have an appointment with my doctor this Thursday as a last effort to get him to do some more tests.

I say he treats me like a child because he typically says, "let me try this," sends me to the lab and then calls and says I'm fine. He never tells me what he's working up. Also, he and other doctors have made me feel like a child because they keep giving me the "he needs pyschiatric help" attitude every time I tell them that my condition is not getting better. They act like all my symptoms are so far from being related that I'm crazy. The sad thing is, I can go to the Mayo clinic website and find atleast 5 conditions that list 95% of the symptoms that I have. But none of the doctors I have seen to date have mentioned any of them.

I'm just frustrated. If this turns out to be an extreme cause of adrenal fatigue, it would make me feel better and thus able to buy into the diagnosis, if I knew of others who had it (and only that) and had the symptoms that I have. My symptoms just feel too painful to be adrenal fatigue.

Thanks for listening MG and Rumpled!:angel:
Can't you talk him into a trial of Cortef or Adreset given the border line low cortisol test? Just to see if it helps? I hate the you are normal. Well normal in a statistical Gausian bell curve about a statistal average.. does not mean optimal for you. Have you looked to the Armour physician locator database for a thyroid/endocrine system savvy MD near you. If the mD treats you like a child... as you say. Find a new one. I would have given... and have given MDs the boot for less. I also make sure the other MDs that are good hear about them and as many patients as possible too. What city in IL do you live in.. I will dig up Armour approved MDs in your area and list them by name and city for you. Now I am mad for you. I am glad you ACTH is normal.. you don't want that sucker high.

MG
It could be that you are cyclical - so one test is simply not adequate. I am not a fan of trials on steroids from my experience though, as that just shuts down the adrenals and sometimes they never recover and then you are pretty much stuck on steroids the rest of your life. It is hard to manage your life on steroids - I have to do it daily.
DHEA is an over the counter "vitamin" and too much will give you acne and greasy skin. DHEA is a precurser hormone and will convert to testosterone and estrogen - depends on your body and what it wants or think it needs.
Your doctor needs to check your cortisol at different times of the day - if you are symptomatic, he really is doing a disservice by dismissing you. Can you find another doctor? I really would switch and find another doc and get tested thoroughly before taking any other medications so they see you as you are, without any interference. Why they have to be endummies, I have no idea.





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