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Jen's Story...

Hello from the Finger Lakes region of central New York!

We are Joe and Jen, and Joe is in the process of being tested for Cushing's.

About seven years ago, at age 30, Joe had a sudden, inexplicable spike in his blood pressure (he never had high blood pressure before). His primary put him on BP meds without looking into the cause of the high BP. His BP was never controlled on the meds. He gained massive amounts of weight, but only in his face, abdomen and the back of his neck; developed sleep apnea; developed high-normal glucose levels; developed striae marks all over his abdomen and on his arms; developed extreme lower-extremity edema; developed low testosterone; and was recently diagnosed with vision problems and possible osteoporosis (he had a screening test for osteoporosis that came back positive, and is scheduled for a DEXA scan to confirm).

He has had three primary-care physicians in the past two years. They each have told him he is simply obese and eats too much, and all of his symptoms are figments of his imagination. They only wanted to treat his high BP and not look into anything else. He knows his body, and he knows there is something seriously wrong. His new primary said she could find nothing wrong with him, even with all of the aforementioned symptoms!

He had to insist on being referred to an endocrinologist, whom he saw for a consultation on April 30 after waiting two months to get in (the endocrinologist he wanted to see in Rochester, NY, had a six-month wait). She seemed interested in his high BP and his low testosterone and ordered some bloodwork, but didn't tell us what she was testing for, and didn't want to see him back for four months!

Only after we received the first set of test results in the mail recently and did some research online did we figure out that she is testing him for Cushing's. His first 24-hour urine test for cortisol came back high, and she ordered a retest, which also came back high. We called her June 2 and asked if Joe was being tested for Cushing's, and she said yes. She also said that his cortisol levels are higher than normal, but not as high as she'd like them to be -- ???? It seemed like, based on the results of the urinaliysis, she did not want to perform further tests for Cushing's. Joe said he wanted Cushing's ruled out, because untreated Cushing's leads to death.

He requested a dexamethasone suppression test, which she agreed to, but she was only going to measure his cortisol level. According to our research, oftentimes both cortisol and ACTH are measured when a dex test is administered. We questioned her about that, and she said it was no use testing for ACTH during a dex test, as ACTH levels will automatically come out low because dex supresses ACTH production. That didn't make any sense to us, and we requested that she test both hormones. That is when she started screaming and yelling and told Joe that she is the endocrinologist and she would order the tests that she wanted to perform, regardless of what we thought.

We told her we had been doing Internet research on Cushing's, on such reliable sites as the National Institutes of Health (NIH) and support group sites like this one, and she told us we were causing problems and to take our research and find another endocrinologist. She told Joe four times in this conversation to find a new endocrinologist, then wound up hanging up on us!!

A letter of dismissal, which was dated June 4, arrived in the mail on June 6. As it stands, Joe is in the middle of testing for Cushing's and has been abandoned by his endocrinologist, and his primary is not doing anything to find him a new one. Not that there are any Cushing's specialists in the Rochester, NY, area where we live.

We need advice on what to do, where to go for proper medical care and testing for Cushing's and how to get our HMO to pay for it all so we don't have to sell everything we own to get the proper health care we need and deserve!

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