CSRF Members' Letters - Adrenal Tumor

Code 749 Spring 2007 KY
"(The following letter, written in 1999, now includes an encouraging update);
Since 1993 I have been through a lot of sickness; kidney stones, ulcers, high blood pressure, back strain, stress fracture toes, and sprained wrists that turned into Carpal Tunnel Syndrome. All of this leading into the biggest daddy of them all; "CUSHING'S SYNDROME".

In 1995, I quit having periods, started swelling and could not lose weight. My doctor told me to enjoy not having periods. By 1996, I was very depressed, did a lot of crying, and my skin turned purplish-red. By now my face was rounding into moon-shaped, my shoulders were humped like a buffalo, and I was extremely weak. I couldn't even get up from the floor. I was a warehouse worker, so between the C.T.S. and Cushing's, work was very hard. I was going crazy from getting passed from doctor to doctor and trying to find out what was wrong with me. Work was down on me because I was on light duty from the C.T.S. and not getting any better. I didn't know what was going on in my body and not getting any answers. I felt suicidal.

By now I was on my third doctor and, thank God, he realized there was a problem. He sent me to an Endocrinologist. She is the one who diagnosed me with Cushing's. Thank God for her. I told her she's my Angel for saving my life. Finally after almost two years, I felt like there was hope. Her name is Dr. Bajaj. She sent me to the surgeon, Dr. Creevy. He realized I couldn't do any physical labor and excused me from work which was a blessing mentally.

My tumor was on my right adrenal gland. I was cut across my right side and my eleventh rib was removed.

I was born with a clubfoot and they told me I would never walk without a cane. I proved them wrong. I used to be a cheerleader. So because of that physical challenge since birth, I've had to be a fighter. I never dreamed I would be physically challenged like that again but with Cushing's - I was. I obtained an attorney because work was trying to get rid of me. I have since settled with the company and I am now on disability through my work insurance company. In November of 1998, I will be having surgery on my hands to help the Carpal Tunnel and then I will start physical therapy. I want to go back to warehouse work.

My Dad always told me something good always comes out of something bad - you just have to look for it. He was right. I learned who my true friends are and just how supportive my family can be. I am very lucky to have them, especially my Mom who gave me a home to live in and took care of me. I thank my Dad in heaven who gave me knowledge and faith, and my sons, Ryan and Cameron, who had patience and understanding. And a special thanks to my cousin, Debbie, who found information on the internet that lead me to all the special people who have gone through this terrible disease. I don't feel lonely anymore. GOD BLESS!!!

It is now 2007 and I've come a long way since my surgery in 1997. Ten years and several jobs later, I have finally found a great job that I hope to retire from. My pictures were taken 9 years ago. It took about a year to lose all the weight (75 pounds). I have had to always watch my weight, but after surgery the Cushing's weight and looks seemed to just go away without really trying. So I'm glad to say that I physically feel great. But I lost my Mom last year so other than the depression and stress - life is GOOD!! I thank God for being one of the lucky few that have been cured, and don't need to be on medication for the rest of my life. My current battle is over insurance and trying to prove I am healthy. My request for help from fellow CSRF'ers appeared in the last newsletter and I have had a few responses that were very kind and understood what I was going through. Luckily, I have insurance through my company, they just don't have any short/long term disability benefits. That's why they have A…. (insurance supplement) come in once a year to see if anyone wants to "buy" additional benefits. This is when I found out that a person with a "Cushing's history" was not qualified for these benefits. Thus began the quest for anyone else having problems with health insurance. Thanks to Louise Pace for suggesting that a letter from a doctor stating that adrenal Cushing's is curable, can be helpful in approaching insurance companies. Believe me, I will be pursuing that option and will share all the information that comes from this. So, I will return!!

Thank God we all have each other! So basically 10 years after being passed around from doctor to doctor to find out what was wrong with me, now I am being passed around from doctor to doctor to prove that there is nothing wrong with me. Only a Cushing's patient can keep laughing after all this.

Please feel free to contact me anytime by phone or email.
Love and prayers,

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Code 2144 Spring 2007 Florida
Journey with Me-Hello everyone, would you like to take a journey with me? My name is Sharon Peacock and I am a 57 year old married woman, mother (Jeffrey - 35 years old) and grandmother of 3, Jordyn 7, Kacie 5, and Joshua 2. I have been happily married to John (retired army) for 27 years now. I am 5'2" and weigh 183 lbs now and climbing. Most of my life I weighed between 110-120lbs and was in good health until around 2003 - 2004. I really don't know when all of this madness began. I was diagnosed with Cushing's May 11th, 2007. Let's begin…

I have always been a fairly healthy, happy go lucky lady. Never had health problems and hardly went to the doctors. In the year 1999, I had to have a hysterectomy, and the gyno was surprised to find a 12" tumor in my uterus. In fact, he took a ruler, laid it beside it and took a picture of it. I was 49 years old at the time. In 2003 I developed shingles and that was not fun, well my doctor died after that and I had to get a new doctor. When I went to the new doctor he of course wanted to run some tests on me. Because of my age, I am now over 50 and never have had a colonoscopy he set one up for me. They found three (3) polyps and removed them, they too were benign. Well, I just was not feeling myself anymore, gaining weight, thin skin, easy bruising, light headed, stomach always hurting, you know the feeling, something is not right. So, I went back to the doctor's.

In 2004 they ran a MRI and found a small tumor on my right adrenal gland. The doctor said not to worry about it, it is so small and we will monitor it to see if it grows. You know, the doctor knows best so I didn't worry about it. The funny thing about it was, gee, I still don't feel good, I am still gaining weight even though I am not eating anymore then usual. Well, let's chalk it up to old age. So I join Weight Watchers. In fact, Weight Watchers came to my work. We had about 12 associates join. Everyone was loosing weight but me. Oh, I would loose a pound here and there, but everyone else was loosing weight in their body and face, they looked good, me, on the other hand, well, I was gaining! So, here I go to the store and get the South Beach Diet, you know, those itty bitty little microwave meals. I even joined the gym during all of this and walked 3 miles a day 3 to 4 days a week. Still the weight stayed with me. I chalked it up to old age. My husband once asked me, "Sharon, are you eating a lot of food at work?" My sister, Judy, was concerned about my weight. I said "No, I am not eating anymore than usual". I noticed that when I would go to the doctor's now, my blood pressure was starting to rise. In my younger days my blood pressure was 114/77, they would often say to me, I can tell you are athletic by your blood pressure. My cholesterol now is rising, so the doctor puts me on Lipitor to control it. In 2006, while having some work done on my teeth the dentist noticed a white spot in the pallet of my mouth. I went to the doctor, who got me an appointment with an eye, ear and nose specialist. They operated on it and it also was benign.

Then later in the year I started to have severe pains in the belly, another MRI done. They found that I had a kidney stone and I was sent to see a urologist Dr. Young. I believe that he and my sister may have saved my life. While looking at the MRI he noticed the tumor. He asked me if my doctor had spoken to me about it. I said yes, I had had that tumor since 2004, mind you it is now November 2006, and he said not to worry about it. He then asked me about my weight and was I having a hard time loosing weight, he asked about my blood pressure and cholesterol. Well, you could have knocked me over with a feather!!!! I told him about Weight Watchers, the itty bitty South Beach Diet, Slim Fast and nothing was working. I told him about my legs, ankles and top of feet swelling up like balloons and I was on a water pill! I also developed a Hiatal Hernia and had acid reflux, on pills now for that as well. It seemed as though I was falling apart in my old age. Now, he never mentioned Cushing's to me, however, he said that he was going to call my doctor and recommend that I see an endocrinologist. Ok, this has got to be good. Maybe someone can tell me what is going on with my body. I was beginning to think I was becoming a hypochondriac. I believe my husband was thinking the same thing too.

I finally got an appointment with the endo in late April of 2007. It took so long because we have a HMO insurance and before you can see a doctor you must go through you primary doctor who then requests an authorization to see a doctor. During the period between November 2006 and late April 2007, my lower back and legs began to hurt. They hurt really bad when I would walk any distance. So, back to the doctor's I go. I got an appointment around the same time as the endo. The cardiovascular doctor ran a MRA on the lower part of the body. My endo ran 2 24 hr Urine tests, 9 blood tests and said come back in three weeks. I go back and my cortisol number was 140, high, so he runs another test. I was given a pill to take that night (dexamethasone) and blood work the next morning.

Let me back up a little, during the wait for an appointment my sister, Judy, read in the paper (where someone writes in to the doctor and asks questions) about Cushing's. She read it and sent it to me. She called me and said that she had sent it to me and for me to read it. Well, when I read it I couldn't believe it…It was me; every symptom they talked about described me, from the weight gain, to the buffalo hump, round face, thick neck, thin skin, bruising, memory loss, and kidney stone. I had a name. Boy, I wasn't going crazy after all! Maybe, just maybe all of this wasn't because of old age. Maybe, I wasn't just a fat lazy slob, maybe I wasn't becoming a hypochondriac, and maybe I wasn't getting Alzheimer's. Just maybe!! What a thrill.

Now back to the endo, he called me the next night at home to tell me that I had Cushing's and that it was above his expertise and I needed to go to the next level. There are three clinics in Florida that he recommended, Shand's, Cleveland and the Mayo Clinic. On May 11th 2007 I get an appointment at the Mayo Clinic for June 27th, my primary doctor then sends in the request for an authorization to the Mayo Clinic. In the meantime I have an appointment with the cardiovascular doctor on the results of the MRA. I hear the doctor outside the door ordering another test on my aorta because something was not right. He comes in and says to me that my iliac artery, just below the bifurcation had a 60 to 70 % stenosous which was causing the pain in my back and legs. The good news is he thinks he can get it with balloons. I proceeded to tell him that three days ago I was diagnosed with Cushing's. Complete silence, then he said, "I see", silence, "I see well, we won't continue with anything until the Cushing's is resolved." That was that!

I then wanted to know more about Cushing's and went on the Web. I read everything I could on it. Kathy, manager of the Travel Department, came in one day and said that she had found a great site. Cushing's Support and Research Foundation and that I should check it out. I did. What a wonderful site. I read everything, the member letters are so informing, I have learned so much from this website. I decided to join. I heard back from Karen Campbell immediately. She sent me names of others that had Cushing's to contact. What a God send. I will be forever grateful. I e-mail Lee, Michele and Naomi, all wonderful ladies. All have been so kind and compassionate towards me. They will never know how much they have meant to me. They have kept my spirits up and all have shared their story with me. There are no words that I can find to describe how much they mean to me.

On May 23rd my insurance company denied the Mayo Clinic.

Right now I look in the mirror and I say "Hello, who are you? I don't recognize you, you with those slitty eyes, surrounded by those chubby little cheeks, oh, my, look no chin, it kinda blends in with that thick neck. So I look a little closer in the mirror, my my I say, look at that goatee growing and that peach fuzz on the side of the cheeks, that is interesting! Then I turn to the side, and goodness gracious, look at that lovely buffalo hump growing on the back of the neck. That is different. Then I look at the belly, could I be pregnant, I sure look like I am, got to be going on 10 months now, going to pop any day now…. I bet you can relate.

Today is June 30th, 2007 and my insurance company still has not approved any place for me to go for surgery. Out of frustration, my husband called Walter Reed Army Medical Hospital in Washington D.C. the other day and told them of our plight. They have accepted my case. They told John to send all of my medical records to them. They will review them and call him back with a date for us to come up. We are thrilled. I am writing this because I needed to share my story.

July started with a call from Dr. Rieniets, the endo at Walter Reed, to arrange for tests in Washington D.C. Tests and more tests - hate pain, hate needles, you would think that I would get used to the needles… Nope, nadda, not I. : I had to get a wheelchair at the airport as I can't walk maybe 5 minutes and then I must stop. I have 60-70% stenosous in my iliac artery, and let me tell you, my legs and back go into backflips… the pain is bad. I feel sometimes like a little old lady (can't wait for this to be over.)

But now for the good part! Walter Reed has such wonderful doctors! They saw me on their lunch break, they ran tests, the surgeon came out between surgeries to meet me and speak to me, it was unbelievable. Dr. Rieniets was wonderful, I am her first Cushing's but she has done her homework and you can tell she cares. In fact, I am Walter Reed's first Cushing's this year. Now Dr. Wakefield, the surgeon, has done surgery on Cushing's patients before and is very knowledgeable. Oh, they also are going to stint my iliac artery. Can you believe that! Now remember I did not have an appointment to see Dr. Wakefield, but he took the time to come out between his surgeries to meet me.

Dr. Gambino, the MD internal medicine, did my pre op. Again I did not have an appointment and she did this on her lunch hour. Everyone, from the internal medicine, endo, surgeon and receptionists could not have been nicer. Tests were run in the morning and by that afternoon or the next morning they had the results. Now I don't have a date yet for the surgery but will have it soon.

I want you to know that I have been surrounded by loving family and friends. I have met some incredible people on this journey of mine. Scared and Frightened? You bet! Am I a strong person, you bet! Do you remember the song Que Sera, Sera, whatever will be, will be, our future is not ours to see, Que Sera, Sera, whatever will be will be. Just today while sitting out by the pool that song popped into my mind. (I find that interesting also.)

You know, I have always been a strong person in life, and I will survive this. This disease called Cushing's has met his match. I have had a wonderful life so far and have no plans on leaving here anytime soon. I will never give up.

Thank you for going on this journey with me.

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Code 2079 Summer 2006 Ohio
I had adrenal surgery on Wednesday, April 5 because I had Cushing's Syndrome. I am a reporter for th

Moon-shaped face, upper-body obesity and redness of cheeks and neck are all tell-tale external symptoms of Cushing's syndrome.

e Cleveland Jewish News and shared my symptoms and experience with our many readers. I am eager to recover from this disease that has played havoc with my body and hope that my experience will prompt others to seek immediate medical attention. What follows is the article I wrote:

Cushing's syndrome alert: Listen to your body
When something goes wrong, the typical response is "Why me?" So when I learned I had Cushing's syndrome and asked the "Why me?" question, I sensed the answer is that I can share my experience with others about this highly debilitating but reversible disease.

Cushing's syndrome, or hypercortisolism, is a hormonal disorder caused by the body's abnormal production of the hormone cortisol. The problem lies in either a malfunctioning adrenal or pituitary gland. It is relatively rare, affecting 15 out of 1 million people (most often adults 20 to 50 years old). Children can also get it.

Over the past year I felt major shifts in my body. I expressed concern to my family internist about my sudden weight gain, particularly in my upper body and face, puffy pockets of fat ringing my neck; muscle weakness; and a buffalo-like hump that appeared at the top of my shoulders.

Other symptoms included thin, easily bruised skin; the onset of osteoporosis; high blood pressure; shortness of breath; redness of my chest and face; and thinning of my legs and arms. Yet my doctor was unable to connect the dots.

Frustrated, I changed internists, and during a routine physical, my shrewd new doctor, Loren Kendis, familiar with the work of Cleveland native Dr. Harvey Cushing's, gave my condition a name. He consulted with endocrinologist Dr. Robert Brenner and sent me for a simple series of blood and urine tests to measure my cortisol level. Within a week his initial diagnosis was confirmed.

I had a CT scan of the adrenal gland, located at the top of the kidney, and an MRI of the pituitary gland. My problem turned out to be an adrenal adenoma, a benign tumor of the adrenal gland. The cause of adrenal adenomas is unknown, but the current theory is that they arise because of mutations in certain genes.

Following laparoscopic removal of the diseased adrenal gland at The Cleveland Clinic, I'll require steroid replacement for a few months, as normal adrenal tissue does not recover immediately.

I'm going to be fine, I've been told, but only because I took control of my own health and at last received expert medical advice.

Gone untreated, Cushing's syndrome is fatal. They say architects plant vines to hide their mistakes; doctors bury them. The moral of this cautionary tale? Listen to your body. The life you save may be your own.

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Code 2054, Fall, 2005 North Carolina
I wish that I had had someone to reach out to me during my ordeal with Cushing's. I wish I had known about the Cushing's Foundation to help me get through my nightmare. However, I am thankful that now I may be helpful to someone else.

My story begins about three years ago. I am a 57-year-old retired assistant principal from a high school in North Carolina. After years of taking multiple medicines for high-blood pressure and after experiencing significant weight gain, I was finally diagnosed with Cushing's this past December.

My symptoms included thinning, bruising, and flushing of the skin, a moon-face appearance, and incredible weight gain around the abdomen. During this time, I was working out three times a week, eating like a bird, and well on my way to developing diabetes, another symptom that Cushing's patients eventually develop.

The reason for my letter is because I was shocked to learn how this deadly disease goes undetected by most doctors. After years of my family thinking I was a closet eater, you can imagine my relief when I found out there was a cause for my alarming weight gain.

It wasn't until after I went to my eye doctor in May that I realized that something was not quite right. She took my blood pressure and it was 200/110. I had had two ruptures in my right eye within that month, and my eyes were always blood-shot. She immediately called my doctor to see if he could see me right away. He did, but only changed my medication.

While watching TV one day, I saw a commercial about cortisol. I went to the bookstore right away and bought the book by Dr. Tolbott, Ph.D., The Cortisol Connection. I guess you could say that I diagnosed myself after reading his book, although I did not know what it was called.

Before then, I was going to my MD and all he did was change the dosage of my medication. He had known me for years and could not see the changes in my body. At one time I was on 5 different prescriptions, sent home, and told that I needed to lose weight.

After reading The Cortisol Connection, I went to a nurse friend, who worked for a cardiologist, and asked her to check my cortisol level. By the time I saw the cardiologist, by blood pressure had reached an alarming 240/114. The cortisol test came back abnormal and he recommended me to an endocrinologist immediately.

A benign tumor was found on my adrenal gland and was surgically removed this past January. I have since lost 50 pounds. I have no more bruising, no moon face, no thin skin, no blood-shot eyes and best of all my blood pressure is great!

I believe that there are so many people out there, like me that are experiencing a rapid decline in their health and are written off as being overweight. I feel that through your newsletter the word will get out about this dreadful disease that if left undiagnosed leads to death. Therefore I want to become a Cushing's Supporter, and if I can help by being a mentor to someone else, I would love to help!

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Code 2045, Summer 2005 Virginia
Hello! I have been on your website for the past year and wanted to share my story and pictures.  I hope it can help someone going through what everyone with Cushing’s understands. Thank you so much for your website.  It is a blessing to have as much info as possible on the web to help others. 

I wanted to share my story in the hopes to help others they way others did when I was at my worst.  I remember finding great strength knowing that I was not alone.  I quickly realized my story is very similar to others.  In March, 2004, I was still feeling myself, but in May 2004 I started to realize that my spring clothes were not fitting, so I started to diet, to no avail.  I was continuously adding weight (though on a diet of almost nothing) and losing large amounts of hair and just thinking “cloudy” and very anxious, which is not like me.  I KNEW something was wrong with me.   I went to two doctors who told me to diet, that I was getting older (I was 28.)  They would test for thyroid issues and send me home.  I would not back down on the third doctor and was finally ordered a CAT scan.  I will never forget the minute a doctor, who just happened to be watching my CAT scan, noticed my right adrenal gland was “too” big.  He explained it should be the size of a peanut and it was the size of a golf ball.  That night I researched the web and found Cushing’s.  It was like it was a description of me: Buffalo Hump, Moon Face, Middle bloating, thinning skin, loss of hair, depression, etc.  I went to see an endocrinologist the next day to confirm my diagnosis.  I was referred to Dr. Mary Lee Vance at the University of Virginia.  I will never be able to express my gratitude towards her and my surgeon, Dr. John Hanks.  I was so blessed to find them and get the best treatment for me.  My adrenal gland was removed 10/8/04.  I was in the hospital for 4 days.  I was on supplemental Cortisol for 3 months.  My tumor was not cancerous and I finally feel like myself again.  I have been exercising (which took time) and eating right and am losing weight.  I am more than happy to talk to anyone currently going through the madness.  I know how depressing and frustrating it can be.  You have to be active with your diagnoses and pursue all options.   I made it only with the support of family and friends.  You realize who your true friends are when you go through a physical change such as Cushing’s.  It is a wake-up call with how fragile life is.  I feel extremely lucky and I thank God for his guidance.  Thank you and God Bless,

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Code 2013: Spring 2005 Wyoming
My name is Maryann and I am a Cushing’s victim. At the age of forty-four, I noticed something was going on with my body, and like most other Cushing’s people, I had no idea why my body and mind were changing. In 1993, I had some joint pain, but really didn’t think much of it. I went to an internist with a specialty in arthritis. He gave me some pills, did blood work and found nothing. I asked him why I had a hump in my neck and his answer was, “You’re Fat!” I could have died. At 4’11’’ and 115lbs, I always tried to maintain a decent weight but in about 4 weeks I went to 145lbs. A second internist got the same results-nothing.

I fractured my foot but didn’t know why, and things started to go crazy. I couldn’t make any decisions, couldn’t walk without shoes, my bones hurt, there was the hump, and a distorted body. The facial hair was just awful, I had to wax my whole face. My ankles would swell, hands had lumps, and my blood pressure was so high I was close to having a stroke. My face was like a balloon. I didn’t recognize myself in a mirror. I would get out of bed and brush the hair off my pillow, then brush my skin off the bed, unreal. I decided to try an orthopedic doctor. He too, found nothing, said that it must be sciatica and to stay in bed for 6 weeks. Nothing was getting better and I was walking with a walker. A doctor said I should see a shrink that I just wasn’t dealing with things and must be depressed. Yes, I was depressed – my body and mind were changing and I didn’t know why! I remember reading in one of the CSRF newsletters a poem that said, “I look in the mirror, but I don’t know who’s looking back.” This the worst feeling you could ever have. Getting dressed in front of your husband is a no – no, you go in the closet or in the dark.

Another set of doctors gave me an MRI and found three tumors on my adrenal gland but said, “No problem – they’re very small” and that I should let them go until they get bigger. Things continued to get worse and so did the depression. Then one day I saw a friend, (a doctor’s wife) who said, “you need to see an endocrinologist!” Dr. Cobin saw me and knew I had Cushing’s. This was the first time she saved my life. She sent me to New York to see Dr. Perkiliedes, who said that I needed surgery. By then I had broken my ribs fifteen times and my thumb. He had to wait because it had also affected my heart. In 1998, I had my surgery. I had to take a lot of pre-tests because they didn’t really know as much as they do now. I was the first laparoscopic adrenal surgery at Mt. Sinai. Students were all over and it was documented on film. They removed the two tumors and said, “It could come back.” I always had it on my mind- it felt lake a cancer victim, but I was up and dancing the following day.

Thanks to my family, especially my husband (who took the brunt of me being a really nasty person. My daughter was frightened and thought I hated her) and with lots of prayers and God, I made it!!

I was fine for a few years, finally had all the weight off and BANG, I felt all the symptoms all over again. I really flipped out. At that point, my son told me one of his friends looked like me, she was puffy and afflicted by this horrible ordeal. We met and comforted each other, even call each other “cushie”. Along with another gal I know very well who had a pituitary tumor, we all get together and share our stories. I guess in one way I am glad to have had Cushing’s to meet and reunite with these girls. God works in mysterious ways.

My second bout with Cushing’s was almost worse because I knew what was coming. This was the second time Dr. Cobin save my life. I was five years older and it hit me hard. In 2001, I had my second surgery. Once again, my family and friends supported and helped me and with God’s help, I made it again.

I still have some problems and I must admit, as do my other cushie friends. We all still feel like we still have a lot of Cushing’s in us. I’m on prednisone and other medications for the rest of my life. I’m wearing a medical alert bracelet, just in case of an accident, cold or stress. Every time I look down, it’s a reminder of what I have and have to live with forever. I guess the keyword is live – and I’m trying!! God Bless, Good Luck to all and never, ever give up!!

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Code 2009, Winter, 2005
Hi! I'm hoping you can help me! I am a black female in Atlanta GA, a medical/surgical nurse, and recovering from Cushing's syndrome. I was finally diagnosed in February 2003 after going through at least 8 doctors to get the correct diagnosis. It was blamed on everything; hypertension, diabetes, hyperglycemia, and the birth of my 3rd child on May 16th, 2002. They finally did the dexamethesone suppression test and I tested positive for high levels of cortisol; 24hr urine test, an MRI, and on the CT scan they found a tumor on my left adrenal. I had surgery on April 23, 2003 and my recovery has been extremely difficult. After the surgery my doctor put me on 5mg of prednisone and after about a month, took me off. Since then I have complained and complained about how horrible I feel and he kept saying that my cortisol level is normal and I don't need the steroids. Some of the symptoms I get to this day include severe fatigue to the point where I cannot get out of bed and care for my children the way I would like to, dizziness, feel like I am about to faint or blackout, short-term memory loss, nausea, weakness, headaches, and depression because of these problems. I have lost 2 nursing jobs because of these problems and I don't know where else to turn because I need to care for my household. Lately I have been catching colds, respiratory infections, strep and UTI's and I used to hardly ever get ill. I keep complaining to my endocrinologists about these problems and they seem puzzled and don't know what else to do for me. Sometimes I feel like it's going to be the end of the world if these people don't figure out something! The answers they always give me is that my chemistry is fine and there is nothing else they can do for me. They did test my ACTH and it was 35 and my cortisol last month was 7. My blood pressure does run low, so my new endo placed me on Florinef in March and I was on it until about August. I stopped taking it because I felt it wasn't helping. I started taking hydrocortisone (5mg) in October, but it didn't seem to help either, so I stopped that as well after my first endo became upset that the new endo had put me on it and the florinef. I am getting unrelated answers from two different endos and don't know what else to do. I have lost a lot of weight - before the surgery I was 5'3" and 209 lbs. and a month afterwards, 180 lbs. and now today I weigh 119 lbs., which is my normal weight. I'm really glad I lost the weight, but I still feel miserable. My story sounds like so many others, so I guess I will just wait it out. I would love to hear from anyone else who has been through this! Thanks so much!

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Code 1008, Winter 2005 Florida
A Long Road To Diagnosis! The first time I really realized that I had a serious problem was March, 1999 on a flight home from Salt Lake City where we had been skiing with friends. I tried to read a book and my vision was so blurred that I couldn't make out the words. Things did not improve, so I went to my PCP who diagnosed me first with, high blood pressure, then with diabetes and to round things out, next with glaucoma - all within a matter of weeks. I asked him if it wasn't kind of strange to have all of these things happening at once, but he said no, that it was just a coincidence. Things continued to go down hill. I started to lose my hair, but got increased hair on my face. I got strange purple marks on my chest and arms. The doctor told me they were from being in the sun too much when I was young. I kept telling him, several times in writing, that I thought he was missing something, but he assured me that he wasn't. He sent me to a psychiatrist so that I could deal with stress. Blood tests showed that I had extremely low potassium levels and I was instructed to take multiple potassium pills. Next, I was diagnosed with enlarged red blood cells. The oncologist that I was referred to could not figure out what was causing this. One of my worst problems was that I was unable to sleep and very hyperactive. After only about 2-3 hours sleep, I would get up in the middle of the night and iron or vacuum. My house was never so clean! My husband thought I was crazy. My friends and neighbors became concerned because my neck was huge, my face looked funny and my body was swollen, but my legs and were like sticks. I had had thyroid surgery in June 1998, so that was eliminated as a source of the problem. I also had masses on my breasts, irregular pap smears and a fungus infection in my mouth. There didn't seem to be one part of my body that wasn't having some kind of problem. All these ailments had a very detrimental effect on my ability to perform at work. I am a 7th grade Geography teacher. Unfortunately my classroom is on the second floor. I would go to work early so that no one would see me trying to pull myself up the stairs. One time I knelt down to put something in the bottom drawer of a file cabinet and couldn't get up. I went into total panic because I had a classroom full of kids and I didn't want them to realize that I had a problem. I finally managed to crawl over to a chair and pull myself up. The worst part of it was that by the afternoon my vision was so bad that I couldn't read their papers or see anything clearly. Some days I was afraid to drive myself home. To top things off both of my children chose this time to get married and within four months of each other. I almost didn't make it to my son's wedding.

Through all of this I was seeing many specialists - an oncologist, a gynecologist an eye specialist, and an endocrinologist who is also supposed to be a Cushing's specialist. (He felt very bad after I was finally diagnosed that he had missed it.) Actually, it seemed to me that all I did was go to one doctor after the other. About the same time, my oncologist was insisting that I needed to immediately see a neurologist, who all seemed to be booked up for the next month. My neighbors asked a friend of theirs who is a neurosurgeon if he would see me as a favor. On a Saturday morning when he happened to be in his office alone, he called me to come in. After listing my symptoms he immediately diagnosed me with Cushing's syndrome. I was so relieved to finally have a name for my problems even though I had never heard of it. My husband looked it up on the Internet and sure enough, I had 13 or the 15 symptoms listed. Unfortunately, my PCP still was not convinced and refused to put me in the hospital where the oncologist, the neurologist and the neurosurgeon thought I should be immediately. My PCP wanted to get scans first, but there weren't any machines available for another week. When he told me this, I just sat in his office and cried and cried because by now it seemed like there was one obstacle after another and that I was never going to get help. You might be wondering why I didn't change doctors. Well, I have always thought that doctors were gods. He seemed to be so sure that he was right and he did keep referring me to specialists. But, he never did listen to me because I brought letters to my appointments with him expressing concern that he was missing something.

The neurosurgeon came to my rescue and put me in the hospital on his own even though that was against my insurance company's policy that claimed that I must be admitted by the PCP. Of course, this led to a long fight about who was going to pay the bills. We only won this battle because the neurosurgeon told the insurance company that he would testify that they caused me permanent damage by their delay. So after almost a year, all of the bills were finally paid. Oh by the way, I immediately changed doctors when my PCP refused to admit me to the hospital and of course, I have also changed insurance plans!

On November 12, 1999 I had surgery to remove my adrenal gland and a tumor. I am happy to report that all of the symptoms disappeared after the surgery. I can see clearly without glasses, the high blood pressure, diabetes and enlarged blood cells disappeared. (The oncologist thinks that they were a direct cause of the Cushing's even though they are not listed as one of the symptoms.) My hair has never looked better. I feel like I have experienced a miracle! After 14 months my other adrenal gland still hadn't kicked in so I had to take cortisone every day. I finally changed endocrinologists and the new endo gradually reduced my cortisone until now, I do not need to take any! Today, I feel wonderful and extremely thankful to have survived such a terrible disease.

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Code: 263 Fall 2004 California
It has been approximately 10 years since I found out I have a left adrenal tumor. Since I was seeing an Endocrinologist for hypothyroidism, he agreed to treat me for Cushing's. As far as I know, he is doing a good job checking me every 3-4 months with tests to make sure the tumor is not growing or secreting. I'm not into all the medical terminology as the people I read about in the newsletter. I do feel isolated and try not to let myself become depressed over the way I feel and how I look.

Most of the people who write to the newsletter have pituitary tumors, where I am interested in hearing from someone with an adrenal tumor. I am curious on what determines if they had surgery to remove the tumor since my doctor seems to feel "as long as it's not doing anything, surgery isn't necessary." I feel if I did have the surgery, I would feel better and lose some of the weight, which makes me extremely uncomfortable. A big part of my discomfort is stomach problems, which seem almost constant.
I'm 60 years old, but don't feel old except for this condition. I want to be able to enjoy the rest of my life with my husband who has been a tremendous support. He is extremely understanding and I don't know how I could deal with this without him. Again, I would love to hear from others who have had adrenal tumors removed, or anyone else in my situation.

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Code: 1142 Fall 2004 Pennsylvania
Pieces of a Puzzle- "Oh no, not again!" Sherry, my friend, shrieked on that memorable evening in July, 2002. "Remember what happened last year? Your skin graft? You need to see a wound care doctor. What are you waiting for?" She asked when she heard that I had another gash on my shin. The truth was I felt embarrassed about all my bruises. With encouragement, I went to see Dr. Brian Buinewicz. He treated the wound and I told him the saga I had told so many other doctors about my injuries, the easy bruising, the paper thin skin, the long time it took for cuts to heal, and that I was not diabetic. He looked at me, especially my face and asked, "Have you been taking steroids? Noticed any changes in your body shape? Gained weight recently?" answered , "Well, yes, my body has changed, I have gained weight even though I'm exercising and eat moderately. I just thought it was due to my age (57) and my genetic destiny. I'm beginning to look like my mother." He suggested I should be tested for Cushing's. I called my former family doctor and explained why I wanted to be tested for Cushing's. He told me he didn't think I had Cushing's, but he would order the tests. To his credit, he then added, "I've been stupid before." I responded, "I would be stupid not to be tested!". The tests proved positive and I had my adrenal gland removed in October, 2002.

It was that visit to Dr. Buinewicz's office that helped me make sense of all the ailments, and the sense that I was growing old long before I wanted. That was the final piece of the puzzle. I had led a very active life, was a working mother, had a very demanding teaching job (but then, what teaching job isn't demanding?), ran two miles every morning before work, and was involved in several community activities. I never seemed to run out of energy, that is until about seven years ago. During that time I was diagnosed with high blood pressure (by my students during a blood pressure training class!), elevated cholesterol, fell often, broke ribs, and had droopy eyelids. And there was the dishwasher gash that required a skin graft but still wouldn't heal, and severe back pain for which surgery was recommended. I sensed there was something else wrong with me although I didn't know what it was. I retired in February, 2002, I wanted to find out what was wrong with me: Why I couldn't sleep, couldn't concentrate. Why sometimes I'd see blood on my arm and had no idea how it happened. I had extra nervous energy but was easily fatigued. I continued to gain weight, yet my legs lost tone and withered. I continued with physical therapy and seeing a nutritionist, hoping I would get better.

Then that summer evening in July, 2002 I bumped the dishwasher again. I sat down and cried. I felt like I was crumbling. My husband and I had been having an argument and he stopped suddenly and put his arms around me. I don't think he had ever seen me like that. Before I sat down to write this article, I asked him what I was like before I was diagnosed. "You seemed to be fighting yourself," he began, "You wouldn't acknowledge that anything was wrong with you. And I could see how hard it was for you. And the worst was, I couldn't talk to you about it. You'd get angry." It's two years later. I am so thankful that I am getting better. In March of 2003, I had a spinal fusion. It was successful and I'm able to walk long distances. I still take 5 mg of cortef and now I'm on synthroid. I lost 30 pounds. I worked two days a week at my former school last year. We moved to a smaller house. The best part of my recovery though has been my relationship with my husband. I've learned I can lean on him and his strong arms will be there for me. I am glad to give up my role as 'superwoman' and just be me.

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Code 1165 Kansas
In April 2002 I visited my internist complaining of weight gain. I had been exercising for several months but still continued to gain weight. This was attributed to a changing metabolism (i.e. getting older), which I think was partially the case. However, at this time I was diagnosed with high blood pressure and put on Paxil because he felt this was due to stress that I had been experiencing in my personal life for the past 2 years. After a few weeks he put me on a diuretic for the high blood pressure. In less than a week I was in the ER with numbness in my hands and arms and chest pain. They found that I was seriously low on potassium.

By September 2002 I was noticing 2-3inch pieces of broken hair on my sheets. I had always had fairly long, thick hair. Plus my hairdresser was saying "your hairs a wreck what are you doing". Back to the internist who ran several tests for thyroid and autoimmune diseases and then referred me to a dermatologist. Also, about this time I noticed that my skin broke and bruised easily, I thought possibly this was from the blood pressure medicine.

In March 2003 I went to my gynecologist thinking that it must be female hormone related. I explained all of my previous complaints and added that I felt my face was puffy. He has known me for years and agreed that my face was puffy. He gave me a potassium-sparing diuretic and told me that this would get me back to my old self. A week latter there was no change in my face so I stopped the diuretics. He set up an appointment for me to see an endocrinologist in May.

In April 2003 I was back to my internist for a checkup and asked him if we could change my blood pressure medicine because my face was getting so puffy and I felt it had to be due to something since I had been dieting and exercising since January and had lost 30 pounds (the amount that I had gained) but my face was still puffy. I think at this point he was pretty sure something was up. I did a 24-hour urine test and two days latter he told me I probably had Cushing's disease and referred me to the same endocrinologist that my gynecologist was referring me to. I had never heard of Cushing's. I can remember rushing back to my office and looking up Cushing's disease on the Internet. At first all I could find were articles pertaining to the disease in dogs. I thought oh great I have a dog disease. Thus the beginning of my long and continuous search to find out everything I can about Cushing's.

Upon my visit with the endocrinologist in May 2003 her examination noted temporal fat pads, which I had contributed to gum chewing, and supraclavicular fad pads, which I had not noticed at all until she pointed it out, then I contributed it to working out. I was not buying in to this yet. I felt way too good and had too much energy to have a disease or syndrome. Over the next few weeks she conducted more urine tests that again showed excess cortisol, she then did additional testing to determine the cause of this. An MRI confirmed a small tumor on the right adrenal.

I work at a hospital but there weren't any surgeons at the facility or within the affiliation who had experience with removing adrenal glands. I had researched on the Internet and decided that I wanted it done laprascopically if possible. My endocrinologist and I worked together to find a surgeon and medical center that we both felt comfortable with. The surgeon had performed 97 laparoscopic adrenalectomies so I felt good about that and he was located only 300 miles from me. The procedure was preformed on June 9th 2003. I spent the night and was released the following morning.

Three months post op in September 2003 I started experiencing severe body aches, bone and joint pain and stiffness and muscle weakness. At the time I was just getting out again and working in the yard and lying in the pool so at first I contributed it to overexertion or too much sun. My internist ordered several tests for autoimmune diseases, etc. and nuclear bone scans to rule out any additional conditions. He concluded that these pains must be related to the Cushing's condition

My last ACTH stimulation test was in March 2004. Still not much going on with the adrenal and at this time was diagnosed with hypothyroidism. I am curious as to whether this was caused by my current hypoadrenalism. At almost a year post op I feel I am doing fairly well, my only complaint being my body aches and stiffness. A few months back I started yoga and neuromuscular massages, this has seemed to help.

I am convinced that Cushing's is what God came up with to teach some of us patience. This seems to be the Cushing's motto "be patient". Unfortunately for me this has never been one of my virtues so this has been the hardest part. I am glad I found CSRF. I am an avid Internet user so I don't know why it took me so long. Also, now I am disappointed that I could not diagnose myself by using the Internet. I did hours of research on the Internet prior to my diagnosis searching such things as broken hair and puffy face and never hit upon Cushing's. Of course, it is all so obvious now. My story would not be complete without mentioning a few folks who have helped me through this. My family…………. they have not faltered, they have supported me, never questioned my decisions, put up with me and most of all prayed for me. I am a lucky woman.

I hope to hear from you.

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Code: 1013 Date:June, 2004 Indiana
I would like to thank the CSRF for keeping in touch with your newsletter; it is very comforting. My story is like many others. My symptoms started in 1996 and I was not diagnosed until 1999. I had a left adrenal tumor and a 2 inch cyst grew in my left ovary in just 2 months. I had my left adrenal gland and left ovary removed in June 1999.

I had all the symptoms, except diabetes, including obesity, fatigue, high blood pressure, cessation in menstrual cycles, numerous broken bones in both feet and 4 broken ribs on my left side and 2 on the right. By the time I was diagnosed, I thought I was going to die without knowing what was wrong.

Since surgery, I am doing much better! I am no longer on prednisone or florinef. I feel very lucky and blessed and I value each day with my sons, ages 14 and 8. But, it seems the Cushing's did some permanent damage to my psychological stability and left me with chromic pain due to multiple spinal disc degeneration and arthritic pain due to fractures. I really hate complaining, but I do want to mention that I've had two other surgeries since my Cushing's. I had a cervical disc fusion done in 2001 and a total hysterectomy with bladder suspension in 2002. My future probably holds more surgery on more cervical and lumbar discs. I still feel I am one of the lucky ones!! I would greatly like to hear from others, particularly those with back pain and would be more than happy to help support others. God Bless!

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Code: 145 Date: Spring, 1996
I had surgery to remove my right adrenal gland in November of 1992. At 65, I am 3 years old in my second life! My GP physician was aware of the tumor, but shrugged off my complaints as a neurotic female. After a sudden onset of Addison's, I was finally diagnosed by my psychiatrist, who immediately contacted an endocrinologist. The psychiatrist has since found another of his patients with Cushing's and says our emotional recoveries are outstanding. All mental health providers should be made aware of Cushing's and if you are having trouble getting a diagnosis, consider seeing a psychiatrist.

Code: 733 Date: Spring, 1996
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.

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Code: 196 Date: Spring, 1996
I too am a Cushing's survivor, and this is my story. Looking back, I think my symptoms started shortly after I was married in 1986 at the age of 29. I had been skinny all my life and suddenly started gaining weight. Given the change in lifestyle, I was told that this was normal. I joined Nutra Systems, lost the weight, and was still loosing weight even after I started eating normally again. I figured that my old metabolism was back. Wrong...my system did another flip flop and I slowly started gaining again. In 1990, I vividly remember sitting at my desk at work, stretching my neck back and feeling the fat in my "humpback" neck. Having never been extremely overweight, I didn't realize how unusual this was.

At the same time my eyes seemed to have red oil in them, which I thought was allergies. Then started my acne, so I saw a dermatologist who provided few answers. I finally went to the eye doctor, where I came the closest to the correct diagnosis of a "glandular problem", possibly thyroid. I was tested for a thyroid problem, but all of the tests came back normal.
So, I kept on going, working very hard 40 hrs. per week at my job, working at my husband's new business after work, and taking care of the house and yard while he concentrated on his business. I felt like I was going 100 MPH. In 1992, the mustache started. After a while, my husband started calling me "Mr.", and I underwent electrolysis, which can be painful. I did talk to my regular doctor, who said it was a hormonal problem and to call him again if it got worse. I finally saw my doctor in March of 1992, for shortness of breath, abdominal pain, the weight gain, irregular menses, and joint pain. Again, no answers, just call me if it get's worse.

Well, I am a happy, go lucky type of person, and chalked many of these problems up to stress, which my doctor was aware of. In October of 1992, I saw an allergist for my eyes and skin. I was allergic to everything, so he put me on antihistamines. After a couple of days, I was back in his office in panic because I couldn't breathe. The diagnosis this time was a lung infection. I had also been bruising, but didn't think much of it given my active life. When I bruised from just pressing on my arm with my thumb, I knew something was wrong. At that point, I was very alarmed and called my regular doctor. Needless to say, when I saw my doctor, I was like a mad woman with all of the above complaints, plus a big red round face, stretch marks, sweating like a pig, panic attacks, hyperactivity and an overall feeling that something was terribly wrong with me. After patiently listening to me, he very calmly said he thought he knew what was wrong with me. He told me he was going to do a blood test that would probably be inconclusive, and he proceeded to read to me about Cushing's out of one of his medical books. He told me that sometimes it can take years to obtain a correct diagnosis for Cushing's. That blood test did come back negative, but I ended up seeing a wonderful endocrinologist.

On my first visit to the endocrinologist, he told me that he would do everything in his power to find out what was wrong with me. Within a week, he had positive results from blood and urine tests and sent me immediately for an MRI. He then called me with the news that I had a growth on my adrenal gland and needed surgery right away. I was so pleased that he had found out what was wrong with me! Then panic set in. I called him back. What do you mean a growth? He said yes, it was a tumor, but I didn't want to scare you. Now I really was scared!

I had my surgery in January of 1993, spent 3 days in intensive care, and was sent home two days later. I had a 7 ounce benign tumor on my left adrenal and my right adrenal had totally atrophied. When I got home from the hospital, I was on 90 mg of hydrocortisone, and in immense pain. My incision was approximately 10 inches long on the left side of my back, and the surgery also involved breaking a rib . I was at home, very miserable and in need of someone to talk to who had gone through the same thing. My doctors said that Cushing's was very rare and that they did not know of anyone else. The feelings you go through after surgery, withdrawal, insomnia, and pain. Even now, it is hard to describe, but you get through it. I don't know how, but I went back to work in March, looking like a balloon and feeling absolutely terrible.

I was finally weaned off the steroids by September of 1993. I was 190 lbs. at surgery and lost 40 lbs. during the next year. I tried exercising and herniated a disk in my lower back, which was a huge setback. I took a bone density test because I ached all over, and discovered that I had the bones of an 80 year old. I was told, take calcium, and don't worry about it. My stomach was still big, and I was still being asked "When are you due?". I started telling people that I was just fat, and that stopped the questions! Finally in August of 1995, my OB-GYN discovered huge fibroids that were causing my bloated stomach, irregular menses, and pain. I had a hysterectomy in September of 1995, went back to work and again herniated my lower back. It is now February of 1996, and I am slowly getting around again and am starting a new job.

I know this is a long story, but I write it to let you know that you are not alone and that we all can continue with life. I would like to thank my family and friends who were there for me through everything, especially my husband Bob who is my rock!! I strongly feel that if the diagnosis came sooner, Cushing's would not reek as much havoc with our bodies before and after surgery. It has been 3 years since my surgery, and the beginning of my quest to talk with others who have had Cushing's. Finally, in December I met with two others, and did we talk and laugh! I feel very strongly that talking with others does help. So to all of you, please communicate, think positive and no matter what, keep going on with life, it will get better!.

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Code: 271 Date: Summer, 1996 MALE
In 1970, I had an adrenal gland removed due to a tumor that was causing Cushing's. Before that, repeated visits to doctors resulted in a diagnosis of eating too much and ulcers. Finally, I collapsed due to a perforated ulcer. During surgery, the doctors noted abnormal fatty tissue, which led to a workup for Cushing's. While awaiting surgery for my adrenal tumor, I required more emergency surgery due to blood clots in my lungs. I am now on lifelong coumidan therapy. After about 6-12 months on replacement medication, my other adrenal did start functioning, but even 20 years later I still need to take cortisone acetate when under extreme physical or emotional stress. I have also developed aseptic necrosis, and am on very powerful pain medication. I work out at a gym, and lead a relatively normal life as long as I take the pain medication. Without it, I don't think I would be able to function. I would love to hear from others, as even after 20 years, I don't think I've gotten back to what I consider the old me.

Code: 774 Date: Fall, 1997
I was diagnosed with Cushing's in May of 1997. On July 7, I had an adrenalectomy that was done by the laparoscopic procedure. After not feeling well for over two years, it was wonderful to finally be diagnosed. My blood pressure was high, I was gaining weight and just felt "off". I went to several doctors in Salt Lake City, where we were living at the time, but they couldn't find anything and a couple of them thought I was suffering from "panic" attacks. I knew this was not the case; there was something wrong. Thankfully, we moved to RI where the doctors seemed more aggressive and I was finally diagnosed with Cushing's Syndrome. Since my surgery, I'm feeling better and am looking forward to a complete recovery. I'm currently on hydrocortisone- 20mg in the am and 10 mg in the PM.

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Code: 776 Date: Fall, 1997
After ten years of doctors' appointments and many strange symptoms, I was finally diagnosed with Cushing's in 1989. I was scared but relieved to know that I was not losing my mind, since Cushing's does affect our hormones and so many emotions.

In December of that same year, I had surgery and my right adrenal gland (where a tumor was present) was removed. I was put on hydrocortisone replacement therapy for a little over four years and was finally stable enough to go off the medication.

I feel very blessed to have my life back again. It was a slow and very painful recovery, and I truly thought it was taking forever. I'm here to tell you not to despair. So many wonderful people prayed for me when I was not able to do so. I'm a Christian and God gave me the strength and the hope and the courage to look at the future and not the past. I was a very angry woman and very upset that ten years and more of my life were robbed from me. That anger was taking away any joy I felt for life and I had to make a choice. I chose to get rid of my anger and to live life with whatever abilities I had, and between me and God we were going to get through this.

Throughout this time of my healing, I am so very grateful that I have been able to spend time with my husband, family, and friends, and I have been able to watch my four children grow up. I didn't think I would be around to enjoy that.

I know now that Cushing's can certainly play with our emotions, so it does affect our bodies both emotionally and physically. We can't let it be the winner. We have to help God in our healing. We have to exercise, (I walk) we have to eat as healthy as possible, and try not to smoke or drink too much alcohol. We have to try to keep our mind as alert as possible by getting enough rest and knowing our limitations. Also, read as much as you can and try to learn new things. I even took a Spanish course to refresh my memory from my high school days.

I know that everyone who has had Cushing's has a story to tell. We can't change the past, but we can be grateful for each new day that God has blessed us with now.

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Code: 783 Date: Fall, 1997 MY PARENT HAD CUSHING'S
Hi! I'm 15 years old and I thought my life was about to end. But I wasn't the one with Cushing's disease; it was my Mom. She would come home with headaches and nobody would ever think anything about it. Then, it got worse. She was gaining an excessive amount of weight and growing much more hair. But most of all, she was majorly depressed. Her depression got so bad that she told the doctors she was going to kill herself so they put her in Green Country Mental Health for a week.

She was seeing many different doctors and all of them would simply give her a pain shot and send her on her way. Pain shots don't solve the problems, it just makes them progressively worse.

When school started, I remember every day I would come home and find my Mom laying in her bed crying and wishing she would die. I would always find tears running down my cheeks because I was young and didn't understand why my Mom wanted to die. Very shortly things were starting to get worse. She was diagnosed with Temporomandibular Joint Syndrome (TMJ) which is a bone disease where the jaw muscles grind together. The doctors told her that was the problem. So, she had two teeth pulled and did all the treatments for TMJ.

We prayed but nothing got better. She would get bruises on her arms if I even touched her, and her muscles and bones were too fragile to walk. My Mom kept complaining about how her face hurt. So she went to a neurologist who looked at her and referred her to a dermatologist. He immediately diagnosed her with Cushing's. He found a tumor on her left adrenal gland. He found it on a Monday and she had surgery on a Wednesday. I was relieved to know that all the pain and suffering would soon be over. She had many months of recovery and hasn't completely returned to normal, but she has her life back!

Cushing's disease has definitely scarred our lives and I'm sure many others. It has caused her pain mentally, although physically it is gone. I thank God we have doctors who know what Cushing's is. I think the only thing my Mom wants to know is the life after.....and if it comes back.

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Code: 739 Date: Fall, 1997
I just finished a book called "Coping with Prednisone" by Eugenia Zukerman and Julie Ingeltinger, MD, who is a doctor at Mass. General. It is a wonderful book written for patients explaining the drug and it's side effects. The book contains nutrition advice, exercises, a woman's feelings while taking the drug, some medical information on depression, etc., etc. I would love to suggest this book to any Cushing's Syndrome patient as I found it very helpful in understanding the effects of steroids. I am recovering from Cushing's due to an adrenal tumor and am in the process of decreasing my hydrocortisone dose. I would love to hear from others who had or currently have an adrenal tumor.

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Code: 105 Date: January, 1998
I have just received my application for membership which I am sending in immediately. Thank goodness there is finally a support group for Cushing's.

I was diagnosed with Cushing's in January of 1992. I had the disease for two and a half years prior to my diagnosis. I was seeing an internist and a cardiologist, was being treated for high blood pressure, and was told to lose weight. During the course of my two-and-a-half years, I gained 65 pounds and my blood pressure was uncontrollable. I had severe bruising and skin that became so thin that it bled under my breasts and between my thighs. They still treated me for high blood pressure, said I was premenopausal and blamed most of my plight on weight gain.

I broke my foot and ankle (I was told due to my weight). My husband finally took me to the emergency ward when I couldn't breathe. They found four broken ribs and two older fractures that were healing. I was asked if I was abused. When I told them of my history of illnesses, they told me to see an endocrinologist immediately and gave me a name of one in the hospital. I thank God everyday for that endocrinologist, Dr. Anthony Cannon.

Dr. Cannon told me immediately that I had Cushing's and all my symptoms-weight gain, high blood pressure, stretch marks, acne, brittle bones, fatigue and others were classic symptoms of Cushing's Syndrome. I was definitely not losing my mind nor was I a hypochondriac.

After three months months of testing, both adrenal glands were removed. I had two tumors that destroyed both adrenal glands. I also had a pituitary adenoma.

It's been more that five years since the operations. I am now steroid-dependant, with osteoporosis and severe asthma (steroid-induced). I've been hospitalized 11 times since the operation because of bronchial and pneumonia complications. I have no immune system, which causes problems in my lungs.

I have since moved to Florida and have two new doctors, recommended by my endocrinologist. I am still in contact with Dr. Cannon. Actually, he sent me this application to join your organization. I only wish there were more doctors like him who take care and treat patients as individuals and not as numbers.

Hopefully, doctors and the medical field will become more aware of this disease and be able to diagnose it quickly. Maybe then others will not have to go through so much pain and heartbreak before and after surgery.

It is very hard to resume a normal life after Cushing's, but it is very nice to know there is an organization and people out there that truly care. If I can be of help to anyone, please let me know. God Bless.

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Code: 938 Date: January, 1998
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 did '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: 290 Date: July, 1998
I am not sure how I got on your distribution list, but I would like to say "Thank You". I just wish that when I was sick, I would have had a support group like this one. Both my husband and I read the newsletters and just shake our heads, so many stories sound just like mine.

I was diagnosed with Cushing's of my left adrenal gland in January, 1993 at the age of 44. For four years, I complained about easy bruising, thin skin, weight gain, nervousness, rapid heart beat, and high blood pressure, to a point where I actually thought I was imagining my symptoms. Then I went to a new HMO, and it turned out that the doctor had treated me a few years back for an unrelated problem. She remembered me and immediately knew something was different about my appearance. I used to be small, about 110 lbs., but now my face and belly were really big and fat. My blood pressure was so high, it was hard to control even with various types of blood pressure medicines each day.

My new HMO doctor sent me to a wonderful endocrinologist. She ran numerous 24 hour urine tests. The results showed that I had high levels of two hormones, possibly indicating two tumors. After many, many more tests, they finally did surgery March 17, 1993. The surgery was a success.

After surgery, I too had trouble adjusting to the hydrocortisone. I thought I was going to die!!! Up....down.....crying....not eating. I thought that after surgery it would be a breeze. Boy was I wrong!!!

Four years later I'm completely cured from Cushing's. From my body having all the steroids, I now have severe osteoporosis for which I take Fosamax. I'm still on blood pressure medicine and my thyroid is still underactive, but all in all, I feel great!

My words of advise to all Cushing's and recovering Cushing's patients, BE PATIENT AND HAVE TRUST IN YOURSELF. THINK POSITIVE. I believed that I was going to be all right and I was. I still have aches and pains, but I attribute that to just getting old!!!!

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Code: 739 Date: December, 1998
I was diagnosed with Cushing's Syndrome in Jan 1997, after my family doctor suggested that my uncontrolled high blood pressure could be due to an underlying disease. He had read about Cushing's but had never had a patient with it. I was so lucky that he was so well informed.

He sent me to an endocrinologist who carefully explained the seriousness of the disease, and we discussed the approach he would take to find the tumor causing my symptoms. I really never thought much about being sick, since my symptoms were not very bothersome. I did, in fact, have many---fragile skin, high blood pressure, weight problems, hair loss, a flushed feeling, and muscle weakness in my legs. I assumed that most of those were due to age and my life style. I was a 51 year old x-ray technologist, who did lots of lifting and walking. I was exhausted at the end of a day.
The testing began with a confirmation of the 24-hour urine test. Then I had a CAT scan, which showed a right adrenal tumor. Next, I had an ultrasound that showed gall stones. A CRH stimulation test was done in my doctor's office, but it took weeks to arrange. Next, I met with the surgeon and the date was set, but I needed one more test. It was an iodocholestrerol scan that confirmed my right adrenal was diseased and the other was shut down. Surgery would be May 1, l997. Major abdominal surgery!

During all of this diagnosing time, I had developed severe dizziness, paranoia, blurred vision, panic attacks, a balance problem, confusion, shortness of breath, muscle weakness, and a rapid heart beat---I was a wreck. I stopped driving and had to conserve my energy. I had wonderful support from my husband, family and friends, but I did feel dreadful.
My surgery was preformed 4 months after the first lab test and I thought I was going to feel great. I came home from the hospital on 120mgs of hydrocortisone feeling like I still had Cushing's. My doctor told me that my symptoms would improve slowly. I tapered my hydrocortisone and saw improvement. I had some joint pain and muscle discomfort, but other things improved. I developed severe itching and nausea, but kept seeing my weight drop, my skin improve, and generally felt less fragile.

The days dragged. I posted a sign on my desk that said treatable and syndrome. I needed to be reminded. My dose went up and down, depending on my tolerance for flu-like symptoms. After about 1 year, I was able to stop taking the hydrocortisone and my glands were functioning slightly. Three months later they were "normal". It was a slow process, but now at 16 months after my surgery, I am "cured".

My struggle was tolerable because I had so many people helping me. Their kind deeds got me through many difficult days. I am very grateful for my recovery and want to help others. Please contact me if you would like to talk.

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Code: 190 Date: December, 1998
I was 59 years old when I began to gain weight for no known reason. I never had a weight problem before because I was so active. I tried to flatten my stomach with sit-ups, but nothing worked! I had seen an endocrinologist 15 years ago to have a lobe on my thyroid removed. He gave me medication following the surgery so it was a good reason to visit him again. I had developed a hump on the back of my neck and a very full face. He charged me $100 and told me to watch my diet!! I was pleased he deemed my health good, but it didn't last long.

I was hospitalized with a kidney stone. My husband made it known that he expected my symptoms to be explored. I was sent to the University of Pennsylvania to see Dr. Jennings, an endocrinologist. Within two weeks of testing, I was diagnosed with Cushing's Syndrome. Both adrenal glands were removed.

Recovery lasted over a year and my energy level is still limited. If I am active one day, the next day I am without much energy. I lost my husband 10 years ago. He enjoyed good health but suffered a fatal heart attack at the golf course. Losing him was a great loss. I am over 75 years old now and really need his help. My son, Bill, and his wife Kathy, are there for me and my granddaughter, Kelsey, keeps my spirits up!!

I would like to hear from other Cushing's patients, especially those my age.

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Code: 848 Date: February, 1999
I was 47 years old and most of my friends were going through menopause or post menopause. They thought I was too. My husband thought something was up but attributed my weight gain to over eating. I knew something was definitely wrong with my thyroid so I sought out an endocrinologist. He determined that I did have a goiter, most likely caused by an infection and told me to take two aspirins a day for the pain and come back in two months.

I volunteer at the local library and decided to take things into my own hands. I read every health book that might give me a clue. Then I came upon "Cushing's" in a book published by Planned Parenthood. By then my back was very thick like I was lifting weights. I searched the Internet and looked at every website on Cushing's, including CSRF.

I found another reputable endocrinologist who I was able to convince to give me a 24-hour urine test. I was right and the doctor was amazed! After countless tests, I was diagnosed as having a tumor in the left adrenal gland. My surgery was done in March of 1998. It was a whiz and I was discharged after only three days. I'm down to 2.5 mg of hydrocortisone and am doing OK physically. I've lost most of my weight but the lack of motivation and depression gets to me now and then. At times I miss the energy I had with all the