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Deb's Story...

Hey There

My name is Deb. I was diagnosed with cushing’s around 6 years ago. I am 53 years old. I have been sick with this stubborn disease for more than 5 years. I also have 3 small nodules on my thyroid gland and a slightly enlarged thyroid gland.

I have had 2 transphenoidal adrenalectomies, a petrosal sinus sampling, stereoscopic pin point radiation therapy, ketoconazole therapy for 1 year, and I STILL have high numbers of cortisol in my urine. Nothing seems to work for me. For about 1 ½ years after the radiation therapy my levels were down to somewhere in the mid 50-mid 70. For the past 6 months my numbers have gone back up again and it’s now 2 years since the radiation and the numbers are back up again to 158. I don’t want to have my adrenals taken out.

I haven’t seen any information about the long term effects of ketoconazole. I often wonder if I am a person that should be in a study of cushings’s since nothing seems to work for me. The ketoconazole worked while I was on it but how long CAN one stay on that without side effects from that? I can't seem to find any info.

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