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Mary T's Story...

I first felt something was wrong with me in 1985. I was a Sophomore in high school and enjoyed running long distance in track. I was thin, healthy, happy--everything was great.

I started having a growing list of complaints. My skin on my face developed a rash and I had bad acne. Hair started to grow on my neck and on my upper lip. My periods became irregular--sometimes I'd skip one or two. I became very emotional--crying if someone looked at me wrong. It hurt to exercise--I kept getting sprains and strains and I wasn't doing anything differently.

My Mom took me to the doctor again and again. I was put on medication to clear up my acne. Nothing for my mood swings. Nothing for my aches and pains. I had a dexamethasone suppression test done. I also had a CT scan of my adrenals. The doctor said he didn't know what was wrong.

My complaints increased. My face looked moonish but I had not gained weight. My skin was getting thin and I saw striae where my skin rubbed on my clothes. I got tonsillitis and was hospitalized for a couple days.

I went off to nursing school my Sophomore year of college. I made many trips to the student health service. I had bronchitis that wouldn't go away. I had bursitis in my shoulder from carrying groceries. I was depressed. I had serious anxiety. I found it difficult to concentrate.

They tested my thyroid function and it was normal. I was sent for learning disability tests--which all came back normal. I was sent to learn relaxation techniques.

I noticed my face was still moon shaped. I had a fat pad between my shoulders. I was starting to get a tummy. There was hair starting to grow on my chin. I was always hungry and I started gaining about 10 pounds a year. By the time I graduated from college I had put on 40 pounds.

During nursing school I was surrounded by medical personnel on a daily basis. Everytime I complained to the doctors at student health I was told it was all in my head--there was nothing wrong with me.

I went to work on a medical unit out of nursing school. I strained my back when I started doing patient care. I fractured my elbow when I was knocked down. I was bruising easily. I lost the 40 pounds I gained in college but I still had a moon shaped face, the fat pad on my back and extra fat on my tummy. I still had hair on my chin.

A little over a year later I started to gain weight again--a co-worker gave me a diet book. I developed chronic bronchitis. I started getting up three or four times during the night to empty my bladder. People started to ask me if I was pregnant on a daily basis--I had a big belly, large breasts, and skinny arms and legs. I kept hurting myself--I pulled the main connective tissue in my foot by walking normally down the hallway.

Another one of my co-workers said something to one of the doctors I worked with. He persuaded me to have a dexametasone suppression test done. He told me the results were not normal and advised me to get a thorough evaluation at a larger facility.

I was sent for seven days of tests. Low dose dexamethasone and high dose dexamethasone suppression. Scans of my adrenals and my pituitary. Lab draws every four hours and daily 24 hour urine collections.

The first pituitary scan appeared normal. They repeated the MRI taking pictures before contrast and during injection of contrast. They found a tumor. It had taken over eight years to get diagnosed with Cushing's disease.

I had a small ACTH mole removed from my left pituitary and made a partial recovery. I remained 20 pounds overweight. I exercised daily and was careful about my diet but I couldn't lose the weight.

I stopped working a year after my first pituitary surgery and returned to school. I entered a post graduate program to become a registered dietitian.

Some things became clear to me. I had classic symptoms of starvation--not able to concentrate, wasting in my arms and legs, and always hungry. Sure I ate a lot and I looked fat, but I was really starving. The cortisol was keeping the insulin from getting the sugar and protein to my tissue.

I found this all out on my own. I couldn't find anyone with Cushing's to ask questions to. This was 1995.

My cortisol levels went high again and I had my second pituitary surgery in 1996. The left half of my pituitary had a root system of ACTH tumor cells.

I had the surgery after I finished my classes and before my dietetic internship started. Halfway through the internship I needed to get a bilateral adrenalectomy. My ACTH levels remained high--maybe the tumor penetrated the bone. I chose BLA over radiation to my pituitary because I wanted to have children.

After three months off from my internship I was back. I finished one month later than the other interns and passed the RD exam in the fall. I didn't get a job. I spent my time walking and recovering. Even with the BLA I was making sufficient cortisol and did not need supplemental cortisol. By the next summer I had lost most of the weight I gained. I was strong again and wanted to return to work.

I tried working full time and found it to be too difficult. I'd get exhausted. I was fine if I worked every other day. I knew I wasn't completely recovered.

My doctor said I was healthy enough to get pregnant in 1999. An infertility specialist told me I'd never be able to get pregnant without his assistance because my hormones weren't sufficient. I am glad he was wrong. My husband and I have a healthy two year old.

During my pregnancy my cortisol levels increased. After my delivery they did not return to normal. I became Cushingoid again. My doctor initiated testing in September of 2002 when it became apparent my cortisol levels were too high. It took until July of 2003 to identify the source of the adrenal tissue and have it destroyed.

A shadow showed up on a scan on the left side where my adrenal used to be. A nuclear medicine test using a cholesterol isotope confirmed the shadow to be adrenal tissue. In July a radiologist used High Frequency Radio Wave Oblation to destroy the tissue.

I had my left adrenal removed laproscopically and the right adrenal converted from lap to open in 1997. To remove the left adrenal tissue this year the surgeon would have had to navigate around a lot of scar tissue. He had used the RW oblation for liver tumors before and thought it would work on my adrenal adenoma. It worked great. I went home the next day.

I felt fine the first couple months after the oblation. I lost some weight. Then my voracious appetite came back. My doctor had me stop taking my cortisol for a couple days and tested my cortisol--serum and 24 hour urine. The levels came back normal. He gave me permission to stop taking my cortisol. It has been a month today since I have taken any cortisol. I feel great.

I see my doctor in two weeks. I also see my eye doctor next week. I am glaucoma suspect--my eye pressures go up when my cortisol levels go up.

I have been told I was the only one who had two pituitary surgeries, BLA and not taking supplemental cortisol to get pregnant and deliver. Am I? Has anyone else had RW Oblation to destroy adrenal tissue?

Please excuse any spelling errors--I have a two year old distracting me most of the time. Those of you who have been there know what I am talking about.

I have osteoporosis and take the once a week Fosomax. My bone density remained about the same pre and post pregnancy.

While I waiting to be treated and stabilized from 2002 until a month ago I was depressed, irritable, hungry, and tired. I kept hurting myself or I would catch a cold and not be able to exercise. Keeping up with my child with almost no help was a real challenge. I am blessed my husband has a good job and I don't have to go to work. I pray for those of you who feel like I did and have to work full time and take care of your family. My husband refused to let me work full time while I was recovering because he could see how tired I would get. He has faithfully been there for me through most of this ordeal.

I'm also blessed to have a dedicated endocrinologist willing to advocate for whatever I need to get better. I wish more endocrinologists and doctors were like him.

My most recent blessing was finding this support group. I've only met one other person with Cushing's. I knew others were out there and now I've found them. Thank you MaryO.