Patient Comments: Cushing's Syndrome - Personal Experience


At what age did you start experiencing signs of Cushing's? Please share your personal experience. Submit Your Comment

Comment from: Roseyr, 65-74 Female (Patient) Published: October 16

May 2004 I was diagnosed with Cushing's. I had an adrenalectomy and no further treatment was given. I have all the signs of Cushing's, round face, lump on back, extremely hairy body and face, depression, exhaustion and low energy. I recently was given blood work to test to see if I still had any signs of Cushing's. All the blood work came back fine. I have a huge upper stomach and what I call an apron that hangs down from by belly. Lately I am very depressed. I eat as healthy as anyone, even better. I make my own food from scratch but my looks have gotten worse. My stomach is huge and I am so overweight it's embarrassing. I only go out when I have to because I feel like a freak. I know I have Cushing's no matter what the doctor says.

Comment from: 35-44 Female (Patient) Published: February 11

Within 1 year most of my symptoms began, anxiety, hair growth, moon face and massive stomach, high blood pressure, high energy, waking up at 2 am, loss of hair on my head, stretch mark on stomach, cognitive issues. For almost 4 years I struggled misdiagnosed; until finally my last symptom. Massive bruising all over my body. It was confirmed that my blood cells were hemorrhaging in my skin. First blood specialist called me an enigma, could not figure it out. Then I met my 2nd blood specialist. She just looked at me and said, “My goodness, look at your face you look like a chipmunk. Look at your body, you look like you are pregnant, but your limbs are thin. You have Cushing’s.” I asked what that was. She said I have a tumor either on my brain or on my adrenal gland. She was dead on, just from looking at me.

Comment from: Cue, 55-64 Female (Patient) Published: October 28

I started experiencing the symptoms of Cushing Syndrome at around 49 years of age. All of a sudden I gained a lot of weight from my waist up, especially around my neck area, my voice stays hoarse and I feel like something is stuck in it! I have the panic attacks associated with Cushing. I do not have any energy, have episodes of high blood pressure and do not sleep well anymore.

Comment from: tina, 35-44 Female (Patient) Published: July 30

I have a rare chronic case of Crohn's, had it now for 20 years. Only thing that helped as well as saved my life more than once is prednisone. About 5 years ago I started to gain weight (the classic ways of Cushing’s and prednisone), but with years on prednisone, it no longer affected me like that, so I was left with Cushing's and there is no way I can lose the weight. I don’t have a choice but to stay on prednisone.

Comment from: Sandee, 65-74 Female (Patient) Published: July 08

Over the years I had high levels of steroids due to severe asthma attacks. I have been off steroids for about 20 years. About 5 years ago, my hair started falling out, I was told I had hypothyroid issues. Time went on, and 3 years ago I was bruising terribly at the slightest touch, my skin would actually tear at being touched by a corner, a doorknob, or an overstuffed chair. My doctor mentioned Cushing’s, and several tests were done. My blood clotted right away, ruling out leukemia. I was told I just have to live with this condition. It is getting much worse, moving to my legs now. I am also dealing with skin conditions on my face.

Comment from: 831, 13-18 Female (Caregiver) Published: January 09

I take care of a 15 year girl that has the Cushing’s. She has gained 80 lb. has the large neck, tired all the times so sad. All this is caused by steroids, I wonder how long one can live with this.

Comment from: tgeilrn, 25-34 Female (Caregiver) Published: June 19

My daughter is beginning the work up for Cushing's, she has gained 50 lb. and is an active physical trainer. This process seems to be taking forever. I wonder if using Humira for psoriasis is related or if using inhalers for asthma may add to this disorder.

Comment from: mtnglory, 55-64 Female (Patient) Published: February 04

Last April I had 1/2 of my thyroid removed due to a large thyroid sub sternal mass, after 14 months of being told I had acid reflux, due to my cough and difficulty swallowing. My dog was just diagnosed with Cushing’s and I began research on it. I have discovered that the nasal spray fluticasone or Flonase (glucocorticoid) that I have used nightly for 15 years can actually cause increased cortisol levels and adrenal tumors! I have been very tired, often depressed but weight is ok. Where do I go from here? No more nasal spray!


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