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Ectopic ACTH tumor

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This topic contains 1 reply, has 2 voices, and was last updated by  Lindy-sue 4 months, 1 week ago.

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    It seems that those of us who have Cushing’s syndrome from an ectopic tumor outside the pituitary and adrenal glands are rare. I had quick onset with symptoms that landed me in the hospital for two weeks in serious condition. Extremely low potassium, blood pressure 204/110, pulse 140, edema so bad I could hardly walk, all happening almost over night. Diagnosed in hospital, but still haven’t located tumor. Would love to connect with others with similar experience.



    Hi I have an ectopic tumour located in/near my lung. I have had numerous tests to find it MRIs, CTs, PET scans and others. My symptoms were put down to the menopause. I have had a bilateral adrenalectomy but still have to remove the tumour as it is in a dangerous place. Hope yours is easier to remove.

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