Shaw
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Posts posted by Shaw
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That's fantastic! Getting a doctor who will thoroughly test you is one of the hardest parts of the disease. Nobody wants to be sick of have Cushing's but with a lot of us it's gets to a stage where you just know in your gut what's going on and then you have to fight with doctors to get them to listen. I hope testing is quick and the proof comes back right away so you can get back to feeling like a human again.
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If you search the boards and read previous posts you'll find that almost everyone here has dealt with varying lab levels. It's one of the reasons Cushing's is so difficult to diagnose.
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I never had a hump and I definitely had Cushing's Disease. Get some tests and a good doctor.
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It's not nearly as rare as some doctors think. Honestly, most of us have bad experiences with at least one endo so that's a possibility but fingers crossed you get one that's willing to listen and will let you do some testing; push for testing. Do your research, read as much as you can before the appointment - bring pictures of your physical changes if you have them and write down your symptoms. I never saw Dr. F for diagnosis but his website and the boards were the best thing ever for me. His site has lots of good articles so I would read everything there http://www.goodhormonehealth.com/cushings-patients/ and read old postings from these boards.
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I never had a hump but still had Cushing's. Unfortunately your symptoms (and most Cushing's symptoms) can also be caused by other medical conditions so it's important to test everything and if you're concerned about Cushing's I would do some cortisol testing if you haven't already. Have you done any 24 hour urinary free cortisol tests? or had your ACTH checked?
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Oh boy me too. I was paranoid for the first few years and anxious because I always thought Cushing's was coming back. Luckily I had family and a doctor who understood where I was coming from so I could test anytime I wanted to. It took a long time for me to remember things like women have PMS at times and that has nothing to do with Cushing's. I will say I only worried when I wasn't feeling great, when I feel good it never crosses my mind and these days I'm much better at not worrying or feeling anxiety about it.
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Random cortisol is kind of a useless test to test for Cushing's and yes you can have a normal random cortisol result and still have Cushing's.
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Here's a section on doctors that people have found helpful http://cushings.invisionzone.com/forum/26-doctors-hospitals-insurance-nih-and-disability
I found good endos by reading their reviews on rate my doctor. I didn't find a Cushing's expert where I'm from but found a great doc who was open minded and helped.
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The dried urine isn't really going to be helpful for looking into Cushing's. You'd be better off doing a 24 hour urinary cortisol if your doctor will order one.
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You said you did a urine test; was that a 24 hour urine test? What can happen with Cushing's is you have high cortisol levels at night but very low ones during the morning/day and if you do a 24 hour urine sometimes these almost cancel each other out and your result is a completely normal urine test.
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Top right hand corner there's a box that says "Search..." You can select where you want to go search (All Content, Topics, Members etc). I believe you have to register/create an account. before the search function is visible.
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Welcome to the boards! Sorry you have to be here but I hope you'll find answers to any questions you might have. There are a few of us who that still hang out just in case we can be of help and so much information in older posts that is still so relevant. Take care!
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I believe it's been posted about quite a bit. Try searching the forums using: Korlym (it's the name of the drug).
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So saliva is not reliable in your eyes because serum results may or may not be symmetrical to your standards? Well there goes about half the diagnoses on this board then.
My thoughts exactly! Saliva was useless for me during diagnosis but that's just me, I know of many others who owe their diagnosis to spit! I'm thrilled with this cortisol meter because I know it will help SOME people and it just might serve as a building block for a future blood cortisol meter. At least someone out there recognizing the need for immediate cortisol testing.
Anxious
in Guest Questions
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Unfortunately a 4:30 pm cortisol test can't be used to diagnose or exclude Cushing's. The only useful blood measurement for cortisol would be a midnight one. You really need to do a 24 hour urinary cortisol test.