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Originally Posted by Cushiemama  Both you and Mishee both sound like you have Cushings. Having had cushings (and a prolactinoma) I can tell you it isn't easy to diagnose. Your hormones cycle, so you can have low, normal or even high results. It's catching those high results that's hard. And if you don't catch the highs in one or two tests, docs rule out. They think Cushings is too rare. It is NOT. It has many similar symptoms as PCOS, but Cushings is treatable. I am a year out from surgery and I feel better than I have since I was a teen. I've lost 60 lbs, no more oily skin, no more extra hair, no more anxiety...
I was overweight all over. I never had my weight just in my stomach. I never had the hump and my stretch marks never were any color other than pink. I was in denial that I had anything more than PCOS too. But I was wrong. And after I went across country to see a specialist in Cushings, he diagnosed me AND treated me. I wasted over a year seeing docs locally and having them test me for Cushings. The tests that DID come back high, they just said I was stressed or something.
With Cushings you have to be your own medical advocate. Please please google Cushings Help Message board and ask the gals there your questions and they will give you a ton of information. I'm not trying to push anything, I just want people to get help. I've seen too many people feel so bad and not get the right help. A few tests do not say you have Cushings or that you do NOT have Cushings for that matter. You need a LOT. Blood tests at 8am, 4pm and midnight (to determine diurnal rhythm), 24 urine tests at all times of the month, salivary tests and even an MRI and/or CT scan. (The MRI would be for your pituitary gland and the CT for the adrenal glands.)
PM me if you have any more questions or concerns. You shouldn't have to go on feeling like you do. Cushings is treatable and you CAN feel better. The longer you go on having it, the more it does to your body and the harder it is to feel better. |
Cushiemama---
Thank you so much for posting. I'm so glad there's someone on here who knows about Cushings and how hard it can be to get a diagnosis. I don't have Cushings..., I was tested when I was at the highest stress time of my life. I also had my prolactinoma removed and my cortisol dropped afterward to the point that they gave me hydrocortisol for a couple days. I didn't feel worse taking it, no reaction at all, and since then my cortisol has gone back to normal levels. I'm focusing on getting my endo to look into whether I have IR, I haven't yet gotten a PCOS diagnosis.
If I can ask, you said you had a prolactinoma... what treatment did you get for it? I ask because I went through the medications, which never really helped and made me ill. I finally got to the point where I wanted to have the tumor removed, so I did. My prolactin level hasn't lowered to normal levels yet though (it's been two months). I was told that my levels should have lowered right away. I started vitex about a week ago because I really do not want to go back on medications for my prolactin levels. People keep telling me to give my body a chance to heal itself and I definitely want to, but it took so long just to get to this point. I don't want to spend another year of my life trying to sort this out just to be stuck in the same position. I'm trying to be proactive about my health but it's hard when doctors don't view what you're going through as serious.
I'm so glad that you posted. I didn't know about the cyclical nature of Cushings, even though I read everything I could find about Cushings. I wish I could give you a hug. Thanks so much.
