Cushing's UK

Some of you might be interested to know that there is a Facebook group for people testing or diagnosed with Cushing's disease or syndrome. Cushing's is said to be a rare condition where people produce too much cortisol usually caused by a benign tumour in either the pituitary or adrenal glands. It can also be caused by long term use of steroids.

The group is called "Cushing's UK" & is predominantly for people in the UK.

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Thanks for posting, PaulineS.

[Elsjie]

Hi Paulines

Im in South Africa. I don't have facebook. Ive been diagnosed with cushions syndrome.. been gaining weight... water retention... no matter what I eat... doctors here dont know how to treat it or how to get the cortisol levels down. Mine is over 800... any advice? I would really appreciate it

[Hidden in reply to Elsjie]

Hi I'm sorry that you have been diagnosed with Cushing's syndrome. Have you been on long term steroids? If so that can be one cause of Cushing's the only way then is to reduce your steroids down so that you lose the Cushing's symptoms. The other causes of Cushing's can be a benign tumour in either your pituitary or adrenal glands. You need to have further investigations to find out where the excess cortisol is coming from. Tests include an early morning blood cortisol which is sounds like you've had done, 2 or 3 24 hr urines & the Dexamethasone suppression blood test. If these are high then you need to have an MRI with contrast to look at you pituitary gland & a CT scan to see if there is a tumour in either of your adrenal glands. The only treatment if there is a tumour is surgery. Hope that helps a bit? Pauline