CSRF Members' Letters

The Members Letters that appear on this web site have been published in the CSRF newsletter from 1995 to now. Each letter includes a code that you may use to request that the author of a particular letter contact you. To do so, click the Code number link and an email screen will appear. Please include the code number, your name, address, and a phone number as some of our members do not have email. The CSRF will notify the author that you would like to be contacted. Please limit your requests to 5 per week.

The letters have been divided into categories, however, keep in mind that valuable insights can be gained from those with other causes of Cushing's. Click one of the categories below to read the currently available letters.

If you are a CSRF member and do not want your letter posted, please click here. If you are a CSRF member and would like to submit a letter for publication in our newsletter and later posting on this site, please click here.

Pituitary Tumor
Adrenal Tumor
Bilateral Adrenal Hyperplasia
Ectopic
Under 18 at Diagnosis
Male Members
Steroid Medications and Undiagnosed
Cyclic Cushing's
In Memory of...

Please remove my letter
I am a CSRF member and wish to submit a letter

Letters from those with pituitarytumors

Code: 849 Date: July 1998 New York
I don't know how long I had Cushing's disease. I feel so different since the surgery that I can't tell. In February, 1997 my menstrual cycle stopped. My gynecologist discovered low LH and FSH and slightly elevated Prolactin but not enough to be worried. We had no earlier test for comparison so I started with Provera to reinstate the cycles with another Prolactin test at my next checkup. I had no other symptoms at that time but he suspected "mid-brain activity" since I was a little young (39) for menopause.

The Provera stopped working in October. An MRI uncovered a pituitary macroadenoma (10 x 8 mm). My face had become rounder and I also gained more weight on my stomach. The weight gain was gradual, just 5 pounds over 6 months - not much for someone 5'11". I had also always been an avid runner and had been running 15-30 miles/week for about 15 years. My race times had been improving but I considered that the fruit of increased training and eating a macrobiotic diet (not increased cortisol!) My gynecologist suspected Cushing's although he never had a patient before. An endocrinologist ran the tests and confirmed it.

In December, I added 10 more pounds but I continued running until after Christmas although only 10 miles/week. It was very hard to exercise but I felt less confused on days I ran. When I stopped running, it became very hard to concentrate at work. The last few weeks before surgery I felt bad but not terrible. My blood pressure remained low. Doctors kept telling me that I did not look like a Cushing's patient.

The surgery (Dr. Curtis Nelson at Strong Hospital in Rochester, NY) was performed in January and was successful. About half my pituitary was removed with the tumor. Taking Cortisone, I was able to return to work as a supervisor in an information technology company just 19 days after surgery. The first few months I had to leave early due to physical fatigue but I am able to work all day now. My menstrual periods resumed 5 weeks after surgery.

I tried to exercise again and have tendonitis in my elbows and feet after very little effort. Initially I was depressed because I couldn't exercise and I still feel I should not run but I got orthotics to help my feet and have started water aerobics. After seven months, I am still taking a low dosage of cortisone because my adrenal glands have not fully recovered although my ACTH levels are normal. It will just take more time.

Years of running taught me to listen to my body. Although the doctors told me I could exercise right away, I know my knees and feet can't handle it. It is truly amazing the amount of muscle I have lost in such a short time. I won't be running a marathon this summer like I planned and may never be able to but I will run again and I have much to be grateful for. I would welcome anyone who would like to contact me.

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Code: 225 Date: Spring 1996 California
I am 3 years past successful pituitary surgery and almost a year off cortisone. Yet even with all of the continuing symptoms, lack of strength, and days of chronic hurt and depression, I'm considered "cured!!"

I still have periods of terrible joint pain from my toes, arms, hands, shoulder, and neck. Some days I can't even bend. I tell friends that I have gremlins in my body that get together daily and plan "where shall we get her today." Recently, after a few very tough weeks, I had x-rays taken of my spine, shoulders, etc., which showed nothing. No tiny breaks or fractures were seen, and my doctor suggested that I see a physical therapist.
The physical therapist believed the repetition of exercises, not necessarily the total time spent was the most helpful. The therapist put me on five very easy, non-stress, two minute exercises which I did every hour or so, until it became a part of my day, and now, a part of my life. By spending less than 20 minutes, spread throughout the day, my pain level started to decrease immediately and substantially. These exercises are now as natural as my breathing. For other post Cushionites, ask your doctor's advice about seeing a physical therapist.

I'd also like to pass on some thoughts about stress. Everyone talks about stress, it's part of all our lives. It can cause great harm, and it's something we try to "handle well." Stress is something to avoid, yet it surrounds us. Sometimes we can use it well, to encourage our efforts, and other times we fight it, mostly unsuccessfully. My mother, who is with me in love and spirit every day of my life, was a very philosophical and spiritual woman who always had an appropriate quote or saying. I can hear her say to me now, "Let go and let God." Please feel free to contact me, if I can be of help to anyone.

More Letters from those with pituitary tumors

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Letters from those with adrenal tumors

Code: 938 Date: January, 1998 New Jersey
I received an issue of The Cushing's Newsletter in spring of 1997 after being diagnosed with Cushing's syndrome in April of 1997. It was very helpful then to know that I was not alone, and it was reassuring to read letters by others which could have been written by me! Now that I have some perspective on my illness and have had an almost complete recovery, I'd like to share my story.

I had the classic evolving symptoms for about three years, starting at age 26: puffy face and neck, easy bruising, weight gain in my upper body, weakening leg and back muscles, transparent skin, insomnia, etc. I had always been very healthy and in shape. I am a vegetarian and eat well. As my symptoms evolved, I thought I was just getting older, out of shape and gaining a little weight. It grew more embarrassing - people I didn't see very often didn't recognize me. I tried to lose weight and to exercise more but I couldn't get rid of the fat on my face or stomach.

I had been an actress and had become a decent dancer before all this started, but I found myself less interested in performing. I still did creative things, but I realize now that I had a steady fall in self-confidence because I didn't feel attractive. Only my mother kept looking at my face and saying "something's wrong. This isn't you." She pushed me to get thyroid tests, but I was fine. Last spring, my ankles and feet got extremely swollen. I had recently gone on the Pill to regulate my period, which had grown irregular over the past few years, and thought the swelling was a side effect. I went to the gynecologist who also happens to know something about endocrinology, and he said the swelling was not related to the Pill and noticed that I had very high blood pressure. He asked about the big bruises on my shins and my transparent skin. He suggested it could be related to Lupus or a cortisol problem and sent me for tests. Within a week, I was diagnosed with Cushing's.
Testing showed a tumor on my adrenal gland. I had a very successful surgery by an excellent surgeon, Dr. Antonio Alfonso, and am grateful for the excellent care I received from my endocrinologist, Dr. Edmund Giegerich, both of the Long Island College Hospital in Brooklyn, NY.

When I was finally diagnosed, it was a real lesson in paying attention. I've always known intellectually the burden we feel in our culture to be thin and attractive. Women especially feel shame about gaining weight. The frightening thing is that those who care about us think they're protecting our feelings by not saying anything. Who wants to be told they look fat?

I had a good muscular recovery from my surgery but experienced some melancholy and loss of appetite from taking steroids. My husband was very supportive and helped me get through my bouts of depression, which I was experiencing for the first time in my life. At the end of the summer I had a big decision to make. I had already deferred graduate school for a year, and was afraid that if I didn't go in the Fall, I might never go. I had already left my job. I knew I wasn't physically or emotionally fit to go but I knew I didn't want to sit around the house feeling depressed. It also meant moving to another city and living with my sister while my husband stayed in New York.

I decided to give it a try. The first 6 weeks were extremely difficult. I woke up every morning feeling tired and queasy, scared and overwhelmed. I had to force myself to eat. It was nice to lose weight, but when I couldn't eat, it freaked me out and I would get more depressed. An older friend of mine who was very healthy and had been HIV positive for over 10 years recommended St. John's Wort to me. He took it because he couldn't afford not to feel positive.

I was getting desperate and I really didn't want to get involved with prescription anti-depressants, so I gave it a shot. Within a few days I felt a little better and within the usual three to four weeks I felt a hundred times better. I felt centered, like myself, for the first time in years. I regained my appetite and felt happier and more optimistic. I knew that even if I had to stay on the steroids for a long time, that it would be manageable.

This helped me dive into my graduate program and for the first time since surgery, I felt I could really concentrate, be creative, and be interested in new ideas. I remember reading the article on coping by Dr. Fava in your spring newsletter, where he encouraged patients recovering from Cushing's to resume former activities when possible so as to not sit at home brooding and feeling hopeless. As hard as it was to leave my home and start school 3 l/2 months after surgery, I know that pouring myself into something was immensely helpful to my physical and emotional healing. It helped show me that I could still do what I love to do.

During my recovery, whenever I felt my worst, I remembered that there are a lot of people out there suffering more difficult illnesses or treatments, and I felt fortunate. I turned 30 in November and didn't have any of the angst that my friends have felt because I was so grateful to be alive and 95% healthy. My family has many friends around the world who had prayed for me, and I had made it through. We all had a lot to be grateful for at Thanksgiving.
I never really fell into the abyss of wondering "why me?" but I have tried to figure out what the message was. One was to slow down and let go of certain things. Listen to myself and to others. I told one friend that my experience with illness and depression gave me an understanding and sympathy for others who are ill or depressed which I hadn't had before, and this was an important part of my growth as a person.

After going through an identity crisis, feeling like I had been invaded and left with a shell to figure out who I am, I am glad to feel like I've come back down to Earth and have my feet firmly on the ground in my own shoes with new soles!!

I am happy to report that I have lost 25 pounds, I am continuing to get stronger and I'm in the process of successfully tapering off my hydorcortisone. If anyone needs encouragement, feel free to contact me.

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Code: 733 Date: Spring 1996 Massachusetts
Many of you are aware that it has been 3 years since my surgery to remove one adrenal gland. I thought I would wake up and be myself in a few weeks. How wrong I was. I was a recluse in my home for almost a year. I had a puffy face, extended abdomen, and thinning hair. I was (and am still) on replacement hydrocortisone due to my non-functioning adrenal. I was exhausted, slept until noon, was weak, had no attention span, retained little, was in pain, felt like a walrus, was embarrassed to go out, cried constantly, and wanted to die.

I thought. "This is it? What am I going to do? Where am I going from here?" I'm so ugly, I don't want to go out, I can't focus, and I can't commit to anything because I don't know how I am going to feel. Is this it? But, over time, my attitude began to change.

So I can't do what I did, I don't look like I did, I am no longer superwoman, but what can I do? I don't focus on what I can't do, I focus on what I can, and that brings me joy. I enjoy every day. When I wake up, I thank God for the day. I was never a religious person but I have become a spiritual being. I know now, after 49 years, that there is a plan for all of us. We do the best we can. We love people, treat them as we would like to be treated, bring some happiness to others less fortunate, and make a difference.

What do I want to be remembered as? Someone that was attractive, successful, a wonderful friend, devoted mother, loving daughter? Yes, but more importantly, someone that has made a difference. No matter how big or small, someone's life has been a touch better. I have chosen this foundation to try to make a difference: by helping others obtain a correct diagnosis, or locating a Cushing's specialist for someone. Both of these I believe are top priorities. This was my way of making a difference, but all of us have different gifts that we can use to make a difference in so many different ways. I would also like to share the following quote from "A Return to Love" by Marianne Williams.

"Many people have spoken of their illnesses as a "wake-up call". That means wake up and experience life - wake up and bless each morning, wake up and appreciate friends and family. I have heard people with critical illnesses say that their lives only really began when they were diagnosed." So it was with me.

More Letters from those with adrenal tumors

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Letters from those with Bilateral Adrenal Hyperplasia

Code: 114 Fall, 1995 Arizona
I had Cushing's Syndrome due to non-pituitary-dependent bilateral adrenal hyperplasia. Rather than immediately recommend a bilateral adrenalectomy, my doctor put me on ketoconazole, a drug that inhibits steroid synthesis. I did very well on ketoconazole, and all of my Cushing's symptoms dramatically improved. Unfortunately, we had to keep increasing the dose during the year, so eventually surgery was recommended.

My endocrinologist at UCSF recommended that the bilateral adrenalectomy be done by laparoscopy and referred me to a surgeon at UCSF who had experience with the technique. Laparoscopy involves the use of multiple, 1 cm. incisions through which the surgeon inserts small surgical tools, including a camera, and views the procedure on a video screen. This approach is much less invasive than conventional approaches and was developed by Dr. Michel Gagner, at Hotel Dieu de Montreal. In the spring of 1994, this procedure was not yet in extremely wide spread use in the US.

We also learned that Dr. Andre Lacroix, Chief of Endocrinology, at Hotel Dieu was doing research on adrenal hyperplasia. Thus, I elected to travel to Montreal for testing and surgery. Once there, I underwent extensive testing to better understand the causes of the abnormal growth and function of my adrenals. After Dr. Lacroix had eliminated all other possible forms of treatment, Dr. Ganger removed both of my adrenal glands. I was very impressed with the speed of my recovery. I was walking within 24 hours, and was discharged from the hospital within 48 hours. I was off all oral pain medication in about 1 week, and mostly back to all of my normal activities within 6 weeks. If anyone is facing an adrenalectomy, I think it would be well worth the time to find a surgeon skilled in the laparoscopy procedure.

More Letters from those with Bilateral Adrenal Hyperplasia

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