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Tony H., Ectopic Cushing’s

My name is Tony and I live in Georgia. I have been married for 10 years and have 2 amazing children (5 and 10). I am now 38 years old, have had Cushing’s syndrome and this is my story:

Nearing the end of summer in 2011, my wife and I began to notice changes…fast weight gain (we tried every diet known with no success), large stretch marks, acne breakouts on the back and chest, mood swings and issues with anger outbursts, weakness in muscles, ankles that would dislocate all the time and bruise badly, cracked and broken ribs from doing hardly nothing, and the list goes on and on.

With Cushing's

With Cushing’s

We went to see our Primary Care Doctor, Dr. Gary Berliner (local to us in GA) who is an amazing Doctor. At first he told me to push the food away, not to worry and to watch my diet. So we did…. Time passed and things got worse. At that time I had never heard of Cushing’s or any kind of illness that could cause these symptoms. In January of 2013 I went to him for a routine visit, took my shirt off for him to look at my back and he saw all the large purple stretch marks around my abdomen. He immediately stopped what he was doing, looked at me and said, “Tony, I think you have Cushing’s disease, Lets run some tests.” So then it started. Test after test after test after test. My first set of blood work came back on 1/13/2012 showing high cortisol levels of 45.1ug/dL and ATCH of 193.8 pg/ml.

Now the real story begins. My family and I had no idea how bumpy the road was going to be and boy was it bumpy. After those results and a small talk with Dr. Berliner we were referred to a local Endocrinologist, Dr. Geetha Soodini in Johns Creek, Georgia. She was awesome to work with as well. We had to go through what seemed to be millions of tests to prove that I actually had Cushing’s before she could send me to Emory Health Care in Atlanta for the help I really needed. There was no doubt that I had Cushing’s; it was just getting it all on paper for the doctors to see the numbers they needed to treat me. By this point, I was on 2 high blood pressure medications because my blood pressure was sky high and we could not control it. It stayed around 160/109 even on both meds (Lisinopril (20mg) and Norvasc (10mg)). On 2/16/13 Dr. Soodini ordered an AM cortisol test that showed a level of 33.4 ug/dL, a 24 hour cortisol urine test that showed a level of 858.7 mcg/24h and an ACTH blood test that showed a level of 52.7 pg/ml. On 2/15/13 we repeated the ACTH and it increased to 164.4 pg/ml. So I guess we had the info we needed to get into Emory.

Luckily Dr. Soodini ran into Dr. Ioachimescu at a local conference and was able to discuss my case with her. I made an appointment and when we did get in, Dr. Ioachimescu already new about my situation. We then had to repeat all the blood work and testing through Emory directly. We were told that Cushing’s was most commonly caused by a tumor in the pituitary gland. We went for an MRI of the brain and everything came back clean, nothing found. Next, we went for a CT of the abdomen. Again, nothing was found. By this point we were really freaking out a bit. We were told that the tumor could’ve been too small to show up on the MRI so more tests were needed. So, now we get to go through the wonderful procedure of the IPPS. WOW is all I can say. It is so hard to even describe the feeling; it is by far the worst thing I have ever been through in my life. They strapped me to a board (hands, legs, feet, etc.) so I couldn’t move. Strapped my head down with what felt like duct tape, so it wouldn’t move. I also had to be awake through the entire procedure. At first I couldn’t feel anything, but when they got deep inside my head, there was immense pressure and a loud scraping sound, almost like a shovel on a sidewalk. The results of this were negative; again nothing. Dr. Ioachimesu ordered so many tests it was unbelievable. We first went for an MRI of the chest with and without contrast, MRI of the abdomen with and without contrast, and then MRI of the Pelvis with and without contrast. Then the next day we came back and completed an Ostreoscan…This was interesting. They inject you with radiation, you wait like 2 hours, come back and they run an X-ray over your entire body. The radiation attaches to the tumor cells and then they glow to show the presence of a tumor. FINNALLY we found it!! A tumor in the lung! They found a 1.4×0.8cm enhancing nodule in the anterior right lower lobe of the lung. We were immediately referred to Dr. Seth Force at the Emory Clinic. He is also a great doctor. That’s one thing I surely can’t complain about; the doctors at Emory are great. Not one complaint. He saw us immediately. The next week, we were in surgery to have the tumor removed. Tumor free on 4/16/2012.

Showing drastic improvement over time after surgery

Showing drastic improvement over time after surgery

TONYCushings2 (1)

But my body sure had to adjust. The pathology report came back showing an ACTH positive producing carcinoid tumor. I was immediately put on hydrocortisone. I was sick as a dog for the next week at home. I then developed C-DIFF, so I was referred to a Gastroenterologist in Cumming, Georgia. They did an upper endoscopy and found nothing wrong. I still am not normal from dealing with that. I am no longer on any meds except for depression and anxiety. I am currently on 40mg of Celexa and 100mg of Amitriptyline. I regularly see our chiropractor and a massage therapist for some help and relief from the constant muscle pain throughout my entire body. I’m still very weak, my memory is horrible, and I get tired easy. But hey, I’m alive. This April 2014 will be 2 years since my surgery. I still have regular blood work and CT scans to make sure I am cancer free and in remission. I do know that it is very rare for a man to have Cushing’s, even more rare for the tumor to be located in the lung. My family and I are so very thankful to the doctors that have helped me through this rough road in my life.

Member: 121893
Newsletter : Spring, 2012
State: Georgia

Leslie E., Transsphenoidal Pituitary Surgery

I am married and have two daughters, ages 6 and 17. We discovered that I had a pituitary tumor in the summer of 2012, and I had a series of surgeries between December 2012 and February 2013. My symptoms were unavoidable by spring 2012, but looking back, I think my tumor was starting to “zap” me in 2010 with bouts of acne, an irregular period, small amounts of weight gain, and general feelings of being unwell.Continue Reading

Marie R., Transsphenoidal Pituitary Surgery

“YOU! DO! NOT! HAVE! CUSHING’S!” My endocrinologist yelled after I requested more testing despite three negative 24 Hour Urine Free Cortisol tests and a below normal Low Dose Dexamethasone test. “YOU! CAN’T! PROVE! THAT!” I yelled back while my mind desperately reeled for more arguments, more statistics, more anything to get another test for Cushing’s.Continue Reading

Ginger H., Transsphenoidal Pituitary Surgery

As I read stories others had written about their situations with Cushing’s Disease, I laughed, had numerous “me too” moments, and wanted to cry with you. Now I want to share my story, with the hope that it will encourage others and just maybe help someone get a correct diagnosis quicker than I did and get on the road to feeling better.Continue Reading


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