CSRF Members' Letters - Bilateral Adrenal Hyperplasia

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Code: 2098 Date: Spring, 2007 New York
Hi! It's me again. 50 years without adrenals and still doing pretty good.

On October 11, I had my right hip replaced. After some of the other surgeries I have had it should have been duck soup. But, no! Due to our very astute medical community they almost lost me. My General Practitioner, Cardiologist, and Endocrinologist all sent letters to the surgeon concerning my lack of adrenals as well as my current health. I personally had an interview with the anesthesiologist during the preadmission testing. He assured me he knew what to do. My wife also talked with him just prior to the surgery. And yet no booster shot of Cortisone was given.

On the second day of recovery I started to hallucinate and raise hell. The doctors suggested to my wife that I was a drinker and had brought alcohol into the room. When I started to have trouble breathing my wife had to bring it to the attention of the nursing staff. I was rushed to ICU on Friday the 13th. The doctor on duty was shocked to hear I had no Adrenal Glands. Finally, a mega dose of Cortisone was administered (I had been given none in the hospital), luckily I began to recover and finally Cortisone was now on my medication list. All the reports I have received from the hospital, including the medication reports, show no Cortisone was given until my wife brought the lack of adrenals to the attention of the ICU doctor on the 13th.

I am now at home and going to Physical Therapy three times a week. My Endocrinologist has dropped my Cortisone to 20 mg. a day (10 mg. a.m. and 10 mg. p.m.) Down from 25 mg. a day. It sounds as if he plans to drop the dose lower in a few weeks.

What I have learned:

1. Meet with the resident endocrinologist at the hospital to ensure someone with knowledge about your medical condition can supervise your care especially if your endocrinologist does not have privileges in that hospital.
2. All patients need an advocate, a wife, sibling, or parent who knows about your medical condition and your needs and will speak up if necessary to be sure you get the attention you need.

I would love to hear from any long term survivors who have had similar problems or who would just like to talk. Call me at home during the evening 315-298-4839.

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Code: 746 Date: July, 1998
I was 53 and in good health when I developed mild hypertension. Over the next 8 years other symptoms, physical and emotional, presented but were dismissed as "normal" for an aging female. Treatments consisted of blood pressure medication, tranquilizers and pats on the shoulder. At length, the symptoms became so pronounced and bizarre (hallucinations, blackouts, weight shifts, hirsutism) that I was referred for assessment to various practitioners; psychologists, psychiatrist, neurologist, clinical diagnostician, endocrinologist, gynecologist and underwent so many tests.

The end result was a transabdominal bilateral adrenalectomy necessitated by bilateral macronodular adrenal hyperplasia. Recovery was slow but uneventful and in the years since I've been very well managed and am able to lead a "normal"life. I did not return to work and took early retirement at age 62. There was no support group for Addison's disease (adrenal insufficiency) in this area. I established a group in 1988 with 11 people in the metro area and we have grown to over 100 people. We usually have 65 active members and field inquiries from all over the U.S.

During these years, I have developed other medical conditions such as essential hypertension, high cholesterol, arthritis and cataracts which responded very well to surgery. As to medication, I have taken cortisone acetate and prednisone in the past, and am now on hydrocortisone. I can adjust my hormone replacement dosage when it seems necessary, but I seldom need to. I'm basically quite sturdy and am seldom ill. I had a stroke two years ago but was not much affected. My balance is a bit impaired and I use a cane to walk, due more to my back weakness than the stroke.

My emotional state is "labile". I'm the lowest in the AM, not at the prospect of facing the day, but just the physical struggle to wash, dress and paint myself, which I do every day. I'm very much aware of the problems your emotional state can create in interfacing with others and I consciously try to compensate for what I can recognize as inappropriate behavior. Sometimes I do go over the edge, more out of frustration than anger and sometimes I do feel sorry for myself and am not ashamed of that.

I'm lucky to have a supportive family - 3 grown children (one is a doctor) and a husband of 53 years. I do everything associated with keeping house, slowly and with occasional help. Cooking and fancy needlework are hobbies, but my favorite leisure activity is reading, as it has been for my whole life. I'm gratified there is finally a support group for Cushing's patients. I firmly believe that only fellow patients can understand and respond to the non-medical concerns of their fellows.

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Code: 266 Date: December, 1996
I was 23 years old when in February of 1970, I had a bilateral adrenalectomy due to adrenal hyperplasia. I am writing my story with the hope that others whose life has been dramatically changed by Cushing's, will find the motivation and determination to lead an exciting and joy filled life, the way I have, in spite of my checkered health. There were many times that it wasn't easy, but the fact that I had something that I was passionate about, made all my efforts worthwhile. I chose one passion, and others will choose different ones, but I firmly believe that doing something I loved, was the most important thing I could do for me. I hope that others can find their saving passion. Here is my story.

At the time my Cushing's started, I was working 2 jobs, one as a psychiatric nurse and another as a psychological research assistant, as well as serving on an emergency rescue squad. I was also attending community college, with hopes of working my way through medical school. I found that I could easily survive on 3 to 4 hours sleep per night, and I now realize that I was looking for constructive outlets in an attempt to deal with my massive amounts of adrenal hormones. I began to realize that everything was taking it's toll on my nerves and I wasn't responding to stress in a normal way. In tears, I talked to the psychologist whom I worked for, and he immediately gave me the exam that we were doing research on. The results indicated a physical rather than psychological problem, and within 2 months my very enlarged adrenal glands were removed. A month later, I was back in the hospital with hepatitis "C", which is still in a chronic, low grade state, 26 years later.

After my surgery and recovery, one of the cruelest affects of Cushing's struck. Both the hospital and the rescue squad refused to let me return to work. They both felt that I could not react quickly enough in an emergency and would pose a threat to myself and the other staff. As it was, my research project was finished and I found myself completely unemployed. This combined with the sudden shift in hormones resulted in several months of depression.

Finally, with much determination and desire, I applied to an inner city rescue squad, who accepted me even with my health problems. I rode with them just on Wednesday morning's, but I felt that this was my gateway back to a normal life. These Wednesday mornings were so important and motivating for me as I was doing something I loved! I took a bad fall on the ice in 1971, which combined with bone deterioration in my spine, left my back in terrible condition. My doctors told me I would never lift more than 5 to 10 lbs. and would probably be in a wheel chair by the time I was 40. I refused to accept that prognosis, and with the help of my squad members and over 3 years of effort, I was able to rehabilitate myself by lifting weights to where I could again, physically do rescue work. Yes, this was dangerous, but it was just what I needed to make my life a joy to live again. I went on to receive my paramedic certification in June of 1978.

Because of my involvement in the medical area, I have had two experiences where I was able to help others because I had Cushing's. The first was during my psychiatric rotation that was part of my paramedic training. I was working in a psychiatric hospital, and found that one patient didn't fit the typical symptoms for her diagnosis. I mentioned Cushing's to her doctor, and sure enough, she did have Cushing's. It is my understanding that she made a complete recovery!

The second experience occurred when I was assisting in the emergency room between paramedic ambulance runs. The patient was a white male, late 50's, Irish born and raised, and was hospitalized for tests to find the reason for the severe fatigue, weakness, and hypotension. He had not yet been diagnosed when he developed cardiac problems. I took one look at his skin coloring (hyperpigmentation) and his abnormal lab work, and told the physician in charge that I thought that he had Addison's Disease. I think the intern thought I was nuts, but the physician in charge told the staff to follow my orders, as since I had no adrenals, I knew more about Addisonian crisis than he. We stabilized the man with a cortisone I.V. Later that night, when I was called to the CCU, I was surprised when I was told that the man was conscious and he wanted to meet his "Angel".

Eventually, the physical demands of being a paramedic got to be too much for me, and I returned to school and got my degree in Rehabilitation Services. Now, I am disabled again, this time with fibromyalgia. Even with my health problems, I try to keep my mind busy and happy. I am teaching myself to play an electronic keyboard, hope to learn to quilt, and stay in constant contact with a disabled cousin to see if I can help her, or at least support her.

I have found another "love" that has replaced my rescue squad work. I now volunteer as a Literacy Volunteer tutor for basic reading and English as a second language. I had the wonderful opportunity of working with a young traumatic brain injury victim, who had to learn to read all over again. I was able to help her and she passed her citizenship test, and got a job!

Cushing's will definitely change one's life, and it may not be normal by most peoples' standards, but it can be exciting and fun. Recovering from Cushing's is a struggle, but through that experience, each and every one of us learned something that we can use to help others. Most will not choose to follow a dangerous avocation as I did for 11 years, but there is much joy in other community services such as the Literacy Volunteers, Friendly Visitors at nursing homes, and many others, that are much calmer and easier on one's health. Maybe I never got to fulfil my dream of going to medical school, but my life is full even with my health problems.

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Code: 185 Date: Summer, 1996
I was diagnosed with bilateral adrenal hyperplasia and had both adrenals removed in 1974 when I was 26. I think my first symptom was high blood pressure that was actually discovered when I was in the 9th grade. I spent several years under treatment for Stein-Leventhal Syndrome and arthritis. Of course the other symptoms of the moon face, bruising, stretch marks, and many more were also there. I was fortunate to find an internist in my local area who had experience with Cushing's. Since then, I have had two normal children. My oldest was born in 1978 and at birth was very dark complexioned and bloated from the cortisone IV I had been given, but was (and still is) totally normal. My second child was born in 1980, and was severely hypoglycemic at birth. The doctors gave him a shot of cortisone, and he has been fine ever since. During these pregnancies, I did increase my cortisone to 50 mg. per day, versus my normal 30 mg. per day. Over the years, I have developed diabetes and a fatty liver. The doctors do not know if these are at all related to the Cushing's. My biggest problem continues to be fatigue. I teach middle school science and when I am working I am always tired. I turn down any invitations to anything during the week, and use my weekends to recover. All in all, I feel as if I have come through this pretty well. Please let me know if I can be of help to others.

Code: 114 Date: Fall, 1995
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.

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Pituitary Tumor
Adrenal Tumor
Bilateral Adrenal Hyperplasia
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Under 18 at Diagnosis
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