which test is better? - Addison's Disease Message Board

octorus · 03-12-2008, 01:37 AM

Ive posted before asking questions about getting a diagnosis. I am very ill and my dr's are telling me it's fibro. My body is telling me it's addison's. I have had a brown discoloration around my mouth and now under one arm and lately I have developed this lovely tan without ever going in the sun.
My entire body aches as though I have the flu and I have constant cravings for salt and sugar. I have other symptoms but right now those are the most distressing.
My endo did his idea of a workup which included an AM cortisol. It was within the normal range. My prolactin was high and my fasting glucose & A1C was high.
When I returned I begged him to do further adrenal testing but he refused. He made a sarcastic remark about putting me in the hospital and tapping my adrenal glands directly to get a cortisol level. He said that with a normal AM cortisol it is 100% certain that I do not have adrenal insufficiency.
Because I cannot get any further testing done through him I am going to go through *********** to get (hopefully) a definitive answer but I cannot afford more than one test.
In my situation would you recommend an ACTH stim test (does *********** even do that one?) an adrenal antibody test or a 24 hr saliva test?
Thank you so much for your responses.

octorus · 03-12-2008, 03:46 AM

I don't know if it's relevant to the type of test but prolactinemia may be a sign of pituitary issues and I read that the pituitary also produces cortisol.
Also, I'm wondering if anyone else is experiencing extreme lack of tolerance to stress.I have been under tremendous stress and today I just lost it and screamed at and around my kids (not normal yelling, it lasted an hour and I couldn't stop myself, it was awful). I'm normally very patient but I can't stand anything even slightly aggravating.

rumpled · 03-12-2008, 10:52 AM

The pituitary produces almost all of the hormones or at least, triggers them in feedback loops.
Tans can come from ACTH, sugar... but it sounds like your doc is not listening so you need to get to another one.
Find another doc to do more comprehensive testing - the high prolactin will at a minimum cause a lot of emotional stress and it needs to be treated to the fact that the doctor overlooked that proves he is clueless. Have you done visual fields and/or an MRI to determine that the tumor is not interfering with anything else.

octorus · 03-13-2008, 12:12 PM

Rumpled-
thanks for the response. My endocrinologist did give me bromocriptine for the elevated prolactin but never spoke with me regarding the possibilities that a tumor was the cause.
Unfortunately I cannot change dr's at this time. I am in an HMO and it is difficult to change as well as the issue of pending referrals. That is why I decided to go with an online blood test service. I don't want to waste my money though. The main reason why I suspected Addison's is because of the hyperpigmentation. I realize that the muscle pain and other symptoms could be a hundred different things but the hyperpigmentation seemed specific to Addison's. The discoloration around my mouth is getting darker and I seem to be getting more color in my skin every day. My family thought I had been using self tanner. I am about a shade darker than I would normally be with regular use of self tanner.
My internet research (I know that is limited) has only come up with Addison's as causing these specific types of skin discoloration. I don't know if it is. My AM cortisol was 12, within the normal range, so I am hesitant about spending several hundred dollars on testing and I still don't know which test would be better in my situation.

rumpled · 03-14-2008, 07:12 AM

Can you bring in pictures to show the change in skin color? I used to do that to show changes in skin and body - some docs liked it others hated me no matter what I did...