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My name is Kim and I live in Cape Town, South Africa. I am 49 years old. I was diagnosed with Cushing’s in April 2010 after years of unexplained weight gain (30kg in 3 years), petechiae and slow healing of wounds, edema, insomnia, thirst etc
I had transsphenoidal surgery on 31 May to remove a small adenoma from my pituitary. My cortisol levels have not decreased and my last 24 UFC reading was 3000. I am now on a 3 month trial taking Dostinex to try and suppress the cortisol and will have my bloods/urine ACTH re-tested on 27 October see if there is any improvement. I am then meeting my endo on 3 November to discuss the way forward.
I hate being so overweight (100kg) and the marks on my legs make me feel old and ugly. It is a nightmare finding clothes to hide my body. I dread going out these days. Also very tired and moody.
I am consulting with a Prof Stephen Hough (he heads up Endocrinology at Tygerberg Hospital). I am not sure what the game plan is if the meds don’t help. I am even considering having a bilateral adrenalectomy but then it means you have to substitute your cortisol and other hormones for the rest of your life and is it difficult to get the balance right.
I would love to hear from other Cushies who have had a bilateral adrenalectomy.
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