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Alison's Story

Although I had been experiencing symptoms for over a year, I waited until September 2007 when I had horrible stomach pains, a series of sinus and ear infections and the weight began to really pile on before I went in to the doctors. I was told I had a virus and I would be better.

About a week later I woke up to find a large (golf ball) lump above my clavicle, I had a meeting to get to so I just got ready and headed out. I got a panic attack (never had one before) during the meeting, left early and headed to the doc who said it was a swollen lung (this is when I knew I needed a new doc).

Went to my husband's doc and he ordered a series of tests and had concerns about lymphoma or infectious disease. We ruled all of that out and off to the endocrinologist I went. Within about 5 minutes of sitting in her office, she asked if I had ever heard of Cushing's. This was not something I had ever heard, she explained that my physical symptoms are all in alignment with cushing's and ordered a series of tests.

All of my hormones out of my pituitary were off, either too low or too high. She was pretty convinced at this point and ordered a 24 hr UFC ,dex suppression and brain MRI. All of them came back normal, I went home crying.

She since has put me on thyroid medicine (I am hypo) and wants me to begin metformin, which I am unsure about starting. I started the medicine in late November and started to feel better around christmas and had a couple good months, but these last two weeks have thrown me back into extreme fatigues, some depression, and now I have severe joint pain. My fingers, feet, and heels hurt sooo bad.

I have since moved to Portland, OR and have submitted a request to speak with the OHSU pituitary clinic. This is such a drag to be going through, especially since I am 27 and just married.

Update 5/21/08:

Saw endo at OHSU. He says I either have a nonsecreting pit tumor, cushing's, or cyclical cushing's. He mentioned how difficult cushing's is to diagnose and asked for patience as we go through more testing.

I now have 3 buckets, 2 salivary tests, and I will take blood test tomorrow morning. I will go back to him in June to review the results. He also looked at my brain MRI from November and noticed something on the pituitary, possible tumor. He is having his radiologist review it

. Felt good to know we are still in pursuit as to what is wrong with me.

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