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Addison's Disease Message Board


Addison's Disease Board Index


Hi Again,

Some of the best places to get info on this are the support sites. Try to Google the search terms "Cushing's/ help /support" and see what comes up. Get into the sites and look around-read up and share your story with others to see what ideas they may have.

As for testing, my husband had a basic evaluation of his pituitary function, including LH/FSH, IGF-1 (growth hormone), TSH, ACTH, prolactin and then the hormones they stimulate, including Testosterone (full panel including bioavailable levels), estradiol, thyroid (total T4, free T4, Free T3) and a 8am cortisol level. All of these tests are best done first thing in the morning after a 12 hour fast. Then to specifically look for Cushing's there are several tests to screen. 24 hour urine collections for free cortisol, 11pm salivary cortisol and 11pm serum (blood) cortisol. Often the first indication of Cushing's is loss of diurnal rhythm. Normally cortisol is highest in the morning and should be almost nonexistant late night. Cushies have higher late night cortisol (it's what keeps them from sleeping!). Other tests such as the low dose dexamethasone suppression test are ones that doctors often recommend first but they are rarely abnormal in EARLY Cushing's cases. If you do have this test and it is normal-it does NOT rule out the possibility of Cushing's. My husband has done many tests that have come back normal, as well as abnormal results. Depending on the details of your story, your doc may order an MRI of your pituitary (with contrast) to look for a tiny little tumor. Just because you have a tumor, does not mean you have the disease. As many as 10% of the general population have pituitary tumors (1mm-2mm in size) without ANY health issues. That's why the blood and urine tests are usually done first.

I have to admit that your history is quite unusual in that you were treated as an Addisonian with success for so long. Please be very careful in following your Addison's with your doctor-being off steroids can be life threatening as you know, if you do need them. I think Chris is right that you should also fully evaluate the possibility of thyroid disease-as it can go hand in hand with Addison's and do don't have to be positive for antibodies.

Good Luck,
Sadie





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