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Sheryl, Pituitary Bio

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My journey started about 7 years ago. I began with generalized symptoms. I had severe insomnia, muscle and joint aches. I would be wired for a few days than couldnt get out of bed for days. The symptoms continued to get worse.

I sought help from several dr’s which led nowhere. after doing research I really felt that my symptoms were related to cushings. My local endo did run a few urines and salivas which came back elevated, however, he just wanted to re test in 6 months. I was deteriorating so rapidly that I decided to go to LA and see Dr. Friedman. Best decision of my life.

I will be starting on Ketokonazole after he gets labs that he drew back, and he has Dr. M at MD Anderson reviewing my MRI.

For the first time in many years I feel there is a light at the end of the tunnel. I am so greatful that I have found Board s like this one so that I am able to inform myself. So thank you !

Sheryl added her Helpful Doctor, Theodore Friedman, to the Cushing’s MemberMap

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Alice’s Daughter, Undiagnosed Bio

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undiagnosed2

 

Reading the bios and other information online about Cushings has me very concerned for my 15 year old daughter.

At 5 she developed strong body odor and started rapidly gaining weight. She also grew extremely fast. She was the biggest kid in her kindergarten. We have a very tall family so I did not think the height was abnormal but I did ask the doctor about her body odor and told the doctor I was concerned she was starting puberty at 5. The doctor told me everything was fine. I noticed my daughter had tons of pubic hair at age 7 and I took her to the doctor. The doctor did think this abnormal, she was also already developing breasts.

They did a lot of tests and told me her bone age was 3 years advanced. I cannot remember what they said her diagnosis was but basically early puberty that they said would stunt her growth. She is presently 15 and 5′ 9″.

My daughter’s weight remained too high but relatively steady until about two years ago. She has gained 75lbs in the last two years, her hair is falling out, she is having to shave her face because the sides of her face are completely covered in hair, she constantly complains of aching joints and now in the last 9 months she has developed a huge fatty lump on her back just below her neck.

I have mentioned some of these symptoms to the doctor in the past but the doctor blames the symptoms on my daughter’s weight. Her hair loss the doctor blames on stress. My daughter is not stressed. She has a very laid back personality. I am taking my daughter back to the doctor on Monday and am going to insist she check my daughter’s cortisol levels.

Does anyone know of a good doctor in Colorado? What tests should I request from her doctor? Does this sound like Cushings to anyone else? Thanks for any help.

Alice

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