Patient Comments: Cushing's Syndrome - Treatments

Question:

What types of treatment have you or a relative received for Cushing's syndrome? Submit Your Comment

Comment from: catherine, 55-64 Female (Caregiver) Published: April 12

My daughter with Cushing's syndrome went undiagnosed for 6 years. There were devastating changes to her body. She had a new drug by Corcept administered late fall 2015. Long process but she is seeing some improvements. Corcept gives a lot of support to people on their protocol. Very helpful to patients.

Comment from: Recovering cushie, 25-34 Female (Patient) Published: January 03

The treatment I received for Cushing's disease was removal of the pituitary adenoma. I was experiencing unexplainable weight gain, hypertension, osteoporosis, slow healing, moon face, buffalo hump, horrendous stretch marks and I always felt stressed. I tried every diet imaginable and I'm a physical education teacher who exercises regularly. I was told by numerous doctors to 'try harder', it wasn't until I had tests for fertility issues that increased cortisol was picked up and further investigated by my fertility doctor and endocrinologist. Pretty fast I was tested, starting with an overnight dexamethasone suppression test, then a week long dexamethasone suppression test, 24 hour cortisol and ACTH urine tests, petrosal sinus sampling, MRIs and finally endoscopic sinus surgery. I am now on hydrocortisone and thyroxine until my pituitary gland decides to work for me again. What a year!

Comment from: nikki, 35-44 Female (Patient) Published: May 21

I am a 38 year old female who has been very ill for the past 4 years. I found after many tests that I had a tumor. After about a week I was told I have Cushing's syndrome. Two days later I had trouble walking on top of the fact I was losing my vision. The tumor was pressing on my optic nerve. It"s been a little over two years since the tumor removal. The Cushing's stayed with me. I just had a mild stroke a month ago. I have gained 30 lb. within a two month span. It seems like everything is happening all over again. I was told that I had some residual tumor after the surgery. They have been monitoring me for two years. I hurt all the time and I have lots of memory loss. I'll be getting another MRI in 3 days and this will tell if my tumor is growing. Mine was very aggressive and these tumors are usually not. My body looks horrible. I have never weighed over 150 lb. I am now 210 lb. It hurts very badly in my lower back lately. I'll keep you all posted on what going on.

Comment from: sherry, 55-64 Female (Patient) Published: November 08

I have finally been diagnosed with Cushing's syndrome. I have been trying to get someone to listen to me for over 30 years that something was wrong, until I found the right doctors I was told it is all in my head. I am finally getting some help and now I have hope.

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