I don't mean to seem negative, but the vast majority of endocrinologists have no experience with cushing's and don't know how to properly test for it. You will likely have to see a cushing's specialist of which there are only a handful in the US. Unfortunately none are located near you (the closest is in Milwaukee).

The best tests to diagnose cushing's are the 24 hour urinary free cortisol test and the midnight salivary cortisol test. Any other test, such as blood tests done during the day, or the overnight dexamethasone suppression test, are unlikely to be very helpful in diagnosing cushing's. Also, it sometimes takes multiple tests to diagnose cushing's. It can't be ruled out after a single normal test.

I would focus on the folowing things that are very consistent with cushings: the stretch marks, the poor wound healing, the excessive thirst, and the central weight gain. If you have pictures that show your weight gain, that is helpful too.

If this doctor isn't able to help you I recommend traveling to see a specialist. Even if this doctor is able to help you, I recommend traveling for treatment if you have pituitary cushing's as I'm not aware of any experienced pituitary surgeons in Minnesota either.

Thank you for the reply. I wondered about going right to the Mayo clinic, I'm only 1.5 hours from there, but it sounds like they don't have a good specialist there either? I have felt crummy for so long and am just desperate for some answers, I don't want to be brushed off again. I hate going on trips with friends because they complain about how tired I am and how much I need to sleep because I'm always so tired.

No, while the Mayo Clinic may be better than a local hospital, they don't have any cushing's specialists and since testing for cushing's can take a long time, their "do everything here and now" approach to testing and diagnosis doesn't really fit the disease very well.

I can give you the name of the specialist I see if you send me a PM.

Just wanted to post an update. I went to the endo I had an appointment with on Monday and found her very caring and kind. She initially wanted to send me right to the hospital for a water suppression test, but then elected to run a renal panel for the drinking/peeing issue, check a T3 (have only had a TSH done, never a T3 or T4) and do the 24 urine cortisol and midnight salivary cortisol test. After 20 minutes of questions/discussion she thought cushings would be a concern. I wondered if anyone knows how long the 24 hour urine test and midnight salivary test take to get results? I handed in the samples this morning, both completed the same day. Thanks!

It typically takes 4-7 days for the results. Only 1 or 2 labs in the country actually process the salivary cortisol tests and the 24 Hr UFC's have to be sent out as well (although usually not as far and they're available sooner).

Thanks!

Well everything came back normal of course. No one is ever going to figure out what's wrong with me. This is no way to live and I don't want to deal with it anymore. Thank you everyone for your support and help but I can't press on when even my doctor thinks it's all in my head.

I'm sorry to hear that.

If you do want to get to the bottom of this I highly recommend you see a cushing's specialist. One round of tests is often not enough to rule cushing's in or out.