Hi I’m Becky a 34 year old wife, mother of twins and teacher.
I’m having surgery to remove a pituitary tumor this week and am told it will really help to alleviate the Cushings symptoms I’ve had for years!! I wish I had had this diagnosis sooner but I know I’m lucky to have it now as I had planned on bariatric surgery as my last hope.
The opening in a GE Signa MRI machine (Photo credit: Wikipedia)
When the headaches became too much to handle and my face went numb I was given an MRI and now I know the truth.
I’m new to this, scared yet hopeful. I’m determined to get control over this but still, this is hard for me.
I have been battling Cushings Disease for many years. I had transphenodial surgery at the Mayo Clini-Rochester in April of 2008.
Recently my numbers were high again and I can feel that my Cushings is back. I just got done with the long testing process and am waiting to confirm a appointment for a bilateral adrenalectomy. If anyone has had a BLA I would appreciate an e mail. I would like to hear it all- the good, bad and the ugly. I would also like to know if this made your quality of life any better and tips and tricks for recovery. I am very scared. This decision is a lifetime change but one I am willing to take becuase of how miserable I feel now.
I have two children and a husband that although are VERY supportive still need their Mom/wife to be an active part of their lives. Thank you!
I was diagnosed with Cushing Syndrome in June 1999. At that time my urine cotisol level was 342.
Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.
I had pituitary surgery at Mass General because my state didn’t do that type of surgery. After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.
When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.
In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.
I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!
My life has changed a lot in the past year. Last August, I was diagnosed with Cushing’s but if it wasn’t for my boyfriend watching a special on Cushing’s I would still be battling the symptoms today. About 5 years ago I started to gain weight. I’ve always been very active and eating protein diet. I would exercise 5 -6 times a week and still gain weight. It didn’t make any sense to me. I had a personal trainer and he didn’t understand why I wasn’t losing wieght. My stomach continued to get a bigger pouch. I looked pregnant. Over the course of the past few years my weight went up and down. Then I started bruising very easily. People probably thought I was in abusive relationship which was not the case. I had my blood tested for being anemic. My white and red blood cell count went up and down. The doctor’s did not know what was going on and sent me on my marry way.
July 2012, my life changed. My boyfriend caught the end of special on Cushing’s. He asked me if I’ve ever been tested for it? I said “No”!! I was telling my mom about it and how my boyfriend felt I should get tested for it. I really didn’t want to go to my doctor and say test me for Cushing’s. She told me to go get tested. The more I researched it the more I realized I may have this. I finally made an appointment. I went to my doctor and highlighted all the related systoms. I had 11 out of 13. She believed me and started testing me. After all the urine, blood, CT and MRI scans. They diagonosed me August 2012.
I must say I’m lucky things fell into placed. It wasn’t long after my diagonses I was making appointment with Dr. Q at John Hopkins University to have my tumor removed. I
Location of the pituitary gland in the human brain (Photo credit: Wikipedia)
He would have to remove my gland if he wanted to remove the lesion. Which means I would not have any hormones. He did not want to take that away from me since I’m only 28 and have a lot of life ahead of me. 6 months post surgery I’m still taking Hydrocortisone. They are slowly weaning me off the drugs. I can see a few changes. My memory and concentration is coming back. I now have definition back in my face. My weight is still up but that’s due to steriods. I hope that comes down once I’m off.
I beleive I was diagonosed at the right time. It seems like my symptoms took a turn for the worse in a matter of month after I was diagonosed. I wonder today what my life would be like if my boyfriend never saw the special and I never had the surgery. Dr. Q and him saved my life!!! I just pray everyday that the lesion does not turn into Cushing’s. So far, I’m in remission!!!!
One note to all my fellow Cushie’s ~ You have to fight for yourself. Cushing’s is hard to diagonose. If you’re doctor’s don’t believe you find someone who does. Don’t give up!!!
hi everyone i was on the board about 15 years ago with my first taste of cushings disease, i had a reocurrance in 2008 and a second operation, and am now under investigation again
Sharmyn McGraw knows as much about pituitary disease as some doctors.
She learned about it after struggling for years with a medical mystery that began in 1993. First, she began to feel anxious. Then, she began to gain weight, and she developed a rash. Much of her hair fell out. Her eyes began to yellow and her face puffed up. Different doctors gave her different explanations. They told her she was allergic to caffeine. That she was just retaining water. That she was beginning menopause.
In the end, none of those things turned out to be true. She finally figured out that she had Cushing’s Disease, which is caused by excess production of the hormone cortisol, which, in her case, was caused by a tumor on her pituitary gland.
Listen to this episode to find out how Sharmyn got to the bottom of her medical mystery with the help of Dr. Dan Kelly, and how she uses years of knowledge to help others suffering from pituitary diseases through the support group she founded at the Pacific Neuroscience Institute.
From 2019:
Sharmyn, can you briefly walk us through your story – how you started and how you got to where you are today. My story is about the best kept secret in medicine…
I went from a petite dress size 2 to an obese size 22 in just one year. I went from athletically fit to barely able to walk upstairs. One of my closest girlfriends was a former Miss Universe and actor in Hollywood; we looked like sisters. We often hung out socially with those in the entertainment biz where anorexia is a compliment—not a disease.
But in 1993, at the age of thirty-one, I started to gain weight and lots of it. I ate a very healthy diet; I worked out five to seven days a week and trained with a fitness trainer just as I had always done, but the weight piled on. While my friends were busy planning their weddings and starting their families, I began my journey of the next seven years, seeking help from doctors all over California for a correct diagnosis and treatment. My beautiful thick, long blonde hair fell out by the handfuls. I got up to nearly 250 pounds, but the odd weight gain was mostly in my round moon face, and my stomach stuck out over fifty-four inches. Soon, many other symptoms started: I had constant anxiety, and I felt like I wanted to come out of my skin from the constant nervous energy racing through my body.
Nighttime was the worst; while I should have been sleeping, I paced my apartment to help slow down my racing heart. I felt nauseous from anxiety 24/7. I slept fifteen to twenty minutes at a time, but once I’d fall asleep, I would jolt awake with a shot of more nervousness pumping throughout my body. Sometimes I’d go days with only a few hours’ sleep.
Soon my blood pressure had to be controlled by medication; I also needed medication for anxiety and depression just to function. As a single woman, I needed to be able to keep my job; I needed to keep my medical insurance so I could keep seeking help from doctors. Although there were so many times when I wanted to give up, I had to keep going.
All the medical professionals said there was nothing medically wrong with me; just eat well and exercise more was their sage medical advice. I knew they were missing something as none of this was in my nature. A person doesn’t go from being thin, happy, and full of life to gaining over 100 pounds and enduring chronic anxiety and depression for no reason.
I continued for seven long years seeking help from general doctors to endocrinologists to gastroenterology specialists, rheumatologists, hematology experts, and even psychologists. All were highly respected and highly educated; unfortunately, none were willing to think outside their narrow perspective; none of these medical professionals wanted to listen to me, who in their words “let herself go.”
They would not believe me when I told them I was truly eating well and exercising properly but instead, offered more and more prescription drugs. When I said I didn’t want to take the drugs, and I wanted to find out what was causing me to be so sick, they wrote me off as unwilling to help myself. I was madly frustrated and felt betrayed by the medical community as well as society.
Many friends and even some family members felt I was causing myself to be sick. I’m not a shy personality, and I had no problem speaking up. Loudly, I begged for proper diagnosis; I begged for proper treatment. I told everyone, loud and clear, there was something medically killing me, and I wanted my life back, but they continued to blame me for my laundry list of poor health issues.
Eventually, I was so sick, I accepted that this undiagnosed illness was going to kill me eventually, but I was determined NOT to die before I found out what disease had turned my health upside down! I wanted to make sure other people did not have to suffer from this horribly embarrassing, lonely, debilitating disease. So, I started my journey to save myself, and whoever else was suffering like me.
Unlike today, back then, I couldn’t simply Google my symptoms, so I had to research by going through all my medical records. I remained persistent until I got copies of everything I needed. Through the years many doctors suggested I had hormonal issues, but they attributed any hormonal abnormalities to the fact I was obese and suggested if I lost weight, all my health problems would be gone. They were like an annoying, broken record.
But I didn’t go to medical school, so I had to rely on my intuition and the fact that I knew my body better than anyone else. I had a hunch the hormone issues were causing ALL my health issues. Fortunately, while going over thousands of pages of lab results and doctor’s notes, among innumerable discrepancies of the medical opinions and endless mismanagement of my healthcare, I also found a few clues of where to start.
I borrowed a friend’s computer and typed in Cortisol. According to my health records, this hormone had only been tested once in seven years, and it registered as Very High—Above Normal level. The doctors said it was high because I was overweight, but I wanted to see for myself. And up on the computer screen popped an article published by the Pituitary Network Association,www.pituitary.org.
The article’s headline read: “Cushing’s Disease.” In one of my previous medical reports, a doctor wrote he ruled out Cushing’s syndrome. This article proved him uneducated about proper testing for Cushing’s, and he was very wrong.
Cushing’s disease is a secondary disease caused by a pituitary brain tumor. The pituitary is a small, bean-shaped gland, less than one centimeter in size, and referred to as the master gland. It sits at the base of our brain between our optic nerves and carotid arteries. This small but powerful gland controls our quality of life by producing major hormones.
A Cushing’s tumor produces high levels of adrenocorticotropic hormone, (ACTH), which in turn signals the pituitary gland to stop producing the normal production of ACTH. One of the key functions of the pituitary gland is to keep us alive by signaling the adrenal glands when to produce and when not to produce Cortisol, our one life-sustaining hormone. However, the ACTH producing tumor never shuts off the production of ACTH, causing the pituitary to stop its normal feedback system with the adrenal glands.
Therefore, the adrenal glands never stop overproducing our fight or flight hormone, cortisol. For years the medical community and others told me that my health issues were all in my head. Well, in fairness, they were right. Luckily for me, I knew I was not causing this madness. Although it still sounds strange to say, I was so happy to find out that I had a serious and life-threatening pituitary tumor because, for the first time, I knew where to start my fight.
Once I suspected I had Cushing’s disease, I had to find the experts to confirm the often-complicated diagnosis. And that’s when the universe guided me through more research to meet the team that helped save my life! Dr. Pejman Cohan, my neuro-endocrinologist, and Dr. Daniel Kelly, my neurosurgeon, the director of the Pacific Neuroscience Institute in Santa Monica, CA. My angels were in my own backyard!
Dr. Cohan soon confirmed my diagnosis of Cushing’s disease, and it was Dr. Kelly’s difficult task to remove the tiny tumor that wreaked so much havoc. On April 14, 2000, Dr. Kelly successfully removed the tumor, and the next chapter of my journey began: helping others who suffer from this horribly underdiagnosed, misunderstood, life-threatening disease.
For the past nineteen years, I have been honored as a pituitary patient advocate spokesperson both nationally and internationally. Pituitary Tumors are the Best Kept Secret in Medicine. I’ve remained dedicated along with a team of pituitary neuro-endocrine experts to raise public awareness and help educate, and in some cases, reeducate the medical community on recognizing the symptoms of a pituitary tumor and/or hormonal issues related to the neuroendocrine system.
Pituitary disease is uncommon but not rare; however, there are commonly four types of pituitary tumors: prolactin-producing tumors, acromegaly, caused by too much growth hormone, Cushing’s disease, too much ACTH causes a secondary disease of too much cortisol hormone, and non-functioning tumors, which have their own set of problems.
We’re always bombarded by how great it is to pursue your passion, etc. – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you? I can say in all honesty the darkest part of my life, struggling for a correct diagnosis, has turned into the brightest part of my life. The pituitary tumor experts I work closely with: Dr. Daniel Kelly, Dr. Garni Barkhoudarian, Dr. Pejman Cohan, and a handful of others are truly amazing.
These teams of experts respect and value my patient advocate perspective, and they have restored my faith in our medical community. I’m honored to have traveled this difficult journey with these brilliant, caring, and compassionate doctors along with many others who are dedicated patient advocates.
But truly, what makes this journey rewarding and worth the endless hours we’ve all put into the proper treatment and awareness of pituitary disease is the patients. Seeing how far we have come to help raise public awareness and education in our medical communities makes me extremely proud I could be an important part of it.
Speaking with the patients, seeing them get their lives back, helping them to make good, educated decisions about their treatment is really what keeps us all going. And the icing on my cake has been meeting two of my closest friends, Krystina, who had a prolactin tumor, and Shady, who had acromegaly—both had pituitary surgery with Dr. Kelly, and they are leading healthy and productive lives. I love them like my sisters.
So, as you know, we’re impressed with Hormones411 – tell our readers more, for example, what you’re most proud of as a company and what sets you apart from others. When I was growing up, I struggled all through school; learning wasn’t easy for me. One of my high school teachers had me stand up in the middle of her class in front of my peers while she berated and humiliated me over my poor grammar and spelling. I walked out of her class and never went back.
After that, I was petrified to write so much as a greeting card that someone would read. After barely graduating from high school, I was unable to pass the entrance exam for English 101 at our local college. I tested at a fourth-grade level. Earlier that year, I was diagnosed as severely dyslexic.
My high school in Southern California was overcrowded with 2100 students in my graduating class. My home life was chaotic, and there was no one there to help me either. I felt that my dream of becoming a writer was impossible. This was long before computers, so I stuffed my dreams of writing lighthearted mysteries way down inside.
But instead, I excelled at drawing, painting, graphic design, cartooning and photography; anything I could draw, design, capture or paint, I did extremely well. And I still love anything to do with creating art. After my surgery for the pituitary tumor, my passion to help others was bigger than my fear of writing. I knew I would have to write articles and correspond with medical professionals if I wanted to get their help and/or attention.
I created my first flyer, “They Were Right; It Was All in My Head—Pituitary Tumors. The Best Kept Secret in Medicine.” I was scared to death to let anyone see it, but I created a good design layout because of my graphic arts studies, and I finally worked up enough nerve to ask Dr. Kelly to look it over and edit it for mistakes. Dr. Kelly loved it, so after he made a few minor corrections, I was off and running!
The flyer traveled without the help of emails or social media, but rather it was distributed all over the country by people who read it and passed the flyer to someone they thought might have the same disease. This one little flyer helped save so many lives, and it started my patient advocate ball rolling. I took a couple of writing classes because I wanted to learn to be a better writer; one of the classes was to learn how to write for magazines.
I sent out thirteen query letters and got twelve rejections. But when the health editor from Woman’s Day magazine called me and asked if they could buy my story, I said, “I’m a writer; may I write it? And she said, yes! From there I continued writing and publishing my story and raising awareness about Pituitary disease. I’m not sure what was more rewarding, overcoming the challenges that had held me back with dyslexia or raising awareness about Cushing’s to over ten million readers; they both felt amazing.
Nineteen years after my pituitary surgery, it’s finally time for me to write my fun mysteries! I’m working on a three-book mystery series. I’ve finished the first draft, and I’m working on my revisiona. I hope to have, Dying to Date: Looking for Mr. Right but Finding Mr. Wrong, out in 2019; book two: Dying to Marry and book three: Dying to Divorce out after that. My Dying series website and Facebook page are coming soon. Praise to Lillian Nader, my amazing editor for her patience.
My goal is to get involved with speaking for schools to encourage kids not to let people discourage them from their dreams. It will always take hard work, but with dedication and a lot of effort, you can do what you love.
So, what’s next? Any big plans? I have seen a lot of wonderful progress in the work Dr. Kelly and his colleagues are doing at the Pacific Neuroscience Institute to advance treatments and improve the quality of life for their patients with cancerous brain tumors, pituitary tumors and so many other areas of the neurosciences. They are truly a comprehensive Center of Excellence.
I plan to continue helping them and their patients, and I am also excited to write my mystery stories. I will continue to use my public platform to help raise awareness for pituitary disease. I hope to have the opportunity one day to inspiring children the importance of reading great books and telling their stories.
I’d never heard of Cushing’s disease, until it was revealed as the culprit behind my mysterious illness
By Sharmyn McGraw
Photographed by Brett Panelli
For years I was a size two. I worked hard to maintain my weight by exercising and eating a healthy diet—I even had a personal trainer. But in 1993, at the age of 31, my body rapidly changed. In four days I gained 11 pounds, and by six months it was 85. I tried eating less and working out more, but my weight just kept going up.
One year and 100 extra pounds later, my appearance was drastically changed. With most of the weight centered around my stomach, I looked as if I were pregnant with twins. My face and chin were round and the back of my neck had a buffalo hump. On top of it all, my thick blond hair began falling out in handfuls.
The anxiety and depression were nearly unbearable. I was a 31-year-old woman with a 227-pound body living in Newport Beach, California, a town south of Los Angeles where there’s no such thing as being too thin. Obesity just does not exist, especially among my peers. As an interior designer, I was often invited to social events, but I was so embarrassed by my appearance that I started avoiding them.
What was going on inside my body was just as troubling. I felt as if I’d had a triple espresso on an empty stomach. I was flying at top speed with constant jitters and chronic indigestion, rarely sleeping more than two hours a night. Mentally and physically, I was exhausted.
Searching for an Answer
While my girlfriends were busy planning their weddings and starting their families, I went from doctor to doctor hoping that someone would figure out what was wrong with me. In seven years, I sought help from more than 15 highly recommended physicians, as well as nutritionists, psychotherapists, an acupuncturist and a naturopath. Pleading my case as if I was on trial for a crime I did not commit, my closing argument was always the same: “I eat a healthy diet and exercise fanatically. This rapid weight gain, anxiety and depression is completely out of my nature.”
Nearly ever doctor I saw, convinced that I was a compulsive overeater with a mood disorder, simply offered advice on dieting and exercise. “Maybe you just think you work out as often as Jane Fonda,” was one physician’s comment.
One doctor labeled me a hypochondriac, and another said I had too much yeast in my system. Over the course of seven years, I also heard that I had fibromyalgia, a spastic colon, acid reflux and a sleep disorder, was prediabetic and premenopausal. I endured painful and expensive medical tests, including two endoscopies, a colonoscopy, a bone marrow biopsy and multiple CAT scans and ultrasounds. I had my thyroid removed and ankle and knee surgery (due to the excess weight on my joints).
During this time, with my family living far away in Illinois, I relied on my friends for support. Many of them were helpful, but some just continued to drop subtle hints about the latest diets they had read about. As for having a relationship—anxiety, chronic muscle pain and uncontrollable diarrhea were just a few of the reasons I stopped dating completely.
As days turned into years, I knew my symptoms were getting worse. My mind was no longer sharp and quick, and I stuttered to complete even simple sentences. I was not sure how much more I could endure, but I was determined that my obituary would not read, “Obese woman dies of unknown causes.”
I gathered all of my medical records and went to work studying every line. I found there was just one thing almost every doctor agreed on: My cortisol level was too high. In fact, it was three times the normal level for this hormone, yet none of the doctors felt that it had anything to do with my laundry list of complaints. By this point, I was fairly certain that it did.
Borrowing a friend’s computer, I went on the Internet and typed in the word “cortisol.” Up popped an article on Cushing’s syndrome, a hormonal disorder caused by excessively high blood levels of cortisol, and there on the screen were every one of my symptoms. I couldn’t believe it! Had I possibly diagnosed myself seven long years after my symptoms began?
Suddenly I remembered that I had seen the word “Cushing’s” in a report from a clinic I’d been to four years earlier. Ironically, the doctors had ruled it out because my eyes weren’t yellow and I didn’t have mouth sores. Now my next step was to convince a doctor that I had this disease.
Finally, a Diagnosis!
I’ll never forget the day I was ushered into the office of endocrinologist Andre Van Herle, M.D., at UCLA Medical Center. I was prepared to once again plead my case. But without knowing anything about me, he simply shook my hand and said, “So you are here because you have Cushing’s.”
This was a doctor with more than 40 years of experience in diagnosing people with the syndrome, and he knew at first glance that I had the physical appearance of someone with the disorder. It was one of the happiest days of my life. I was overwhelmed with emotion, and tears streamed down my face. Most importantly, I realized I was not crazy and someone was willing to help me.
Dr. Van Herle and his colleague, Pejman Cohan, M.D., soon confirmed through blood tests that I did have Cushing’s syndrome. In my case, as in about 70 percent of cases, the problem was a tumor in my pituitary gland that was causing the overproduction of the hormone adrenocorticotropin (ACTH). This hormone stimulates the body’s adrenal glands to produce cortisol, the life-sustaining “fight or flight” hormone, which has many important functions. High amounts of cortisol, however, can wreak havoc, causing rapid weight gain, upper-body obesity, a rounded face, increased fat around the neck, anxiety and depression. Over time, abnormally high levels can even be life-threatening.
The next step was surgery to remove the tumor in my pituitary, located at the base of the brain, but there was one more obstacle. Although my hormone levels indicated I had a tumor, it was apparently so small that it wasn’t picked up on an MRI. So there was a chance that my surgeon, Daniel Kelly, M.D., director of UCLA’s Pituitary Tumor and Neuroendocrine Program, wouldn’t be able to locate it. Thankfully, he didn’t encounter that problem. On April 14, 2000, Dr. Kelly was successful in removing the tiny tumor though an incision in the back of my nasal cavity.
Today, four years later, I am 100 percent cured, and my body and mind are finally free from the horrible effects of Cushing’s. I’ve been able to lose 40 of the 100 pounds that I gained and am confident I can lose the rest. As a volunteer, I help facilitate a UCLA pituitary tumor support group, and I recently spoke to medical students at UCLA School of Medicine, explaining my difficulties obtaining a correct diagnosis. Looking back over nearly 10 years, it’s painful to think about all that I’ve been through. But I am so proud of myself for never giving up. I hope my story will help encourage and empower other women to do the same.
Pituitary Cushing’s: Sharmyn (sharm on the boards) was featured on the Montel Show.
In 1993 at the age of 31, Sharmyn went from a socially acceptable dress size two and full of life to an obese size 22 and barely able to function in just one year. Despite the years of dedication to maintain a shapely muscular body, she suddenly had no control over the rapid weight gain. Her hours of personal fitness training and a healthy diet did nothing to stop the pounds from piling on. Sharmyn gained as much as eleven pounds in four days, 85 pounds in six months and 100 pounds in a year. Soon the weight gain was the least of her health problems; her hair fell out by the handfuls, her stomach stuck out like she was pregnant with twins, emotionally she felt like a misfit, and much more.
For seven horrific years Sharmyn searched the medical community for help, but over and over doctors told her there was nothing medically wrong with her…nothing some good old dieting and exercise couldn’t fix.
In spite of the many years of challenges within our healthcare system, Sharmyn ultimately diagnosed herself via the Internet and was fortunate to find a team of experts at UCLA Medical Center who confirmed her diagnosis. On April 14, 2000. Dr. Daniel Kelly, a world-renowned pituitary neurosurgeon—her angel – successfully removed the tumor and literally gave Sharmyn her life back.
Pituitary Cushing’s – interview with Sharmyn (sharm on the boards)
Cushing’s disease-Pituitary Gland
Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing’s disease, caused by a pituitary brain tumor.
I am really not sure where to start! I have struggled with medical issues my entire life. I am 25 born with many anomalies–bladder, cleft lip/cleft palate, dilated aorta, hydronephrosis…the list really goes on and on. Thankfully, I have had great doctors and everything is under control until recently.
I had my first appointment with my new endocrinologist. She listened to my history that I highlighted for her and she actually took the time to *think* about me and all of my little medical issues. It was great to see her brain trying to piece things together. When she was doing my exam, she gently touched my shoulders and made a comment that my shoulders were holding a lot of weight. I said that I’ve noticed and that it makes me feel that I look like a football player. She told me that it isn’t that bad, but then asked me if I have stretch marks on my body. I told her that I do and that I’ve actually noticed that they are getting worse and deeper than usual. She looked at my belly and she said that she wants to get my checked for Cushings Syndrome.
She asked if I was on any steroids, and I am not, but I did have a pituitary cyst in 2008 that was surgically drained (specifically a Rathke’s Cleft Cyst). From what I’ve learned, whenever a doctor works near the pituitary there is a risk that hormones will be effected. This may be what is happening to me.
Last April 2012, I was also diagnosed with a pseudotumor cerebri. It is basically under control and I am on Diamox for it. These are my symptoms for why I really think I have cushings:
» Extreme weight gain
» Moodiness, irritability, or depression
» Muscle weakness– my leg muscles get tired very easily, even just walking a few blocks. It feels like I have shin splints, at times!
» Hypertension–possibly, but undetected because of I am on meds for other heart anomalies.
» Immune suppression– a possible reason why I got pertussis (whooping cough) during the end of 2012 even after being given the vaccine
» Hirsutism–embarassing, but true
» Hypercholesterolemia–to the point that I am on a medication for it
» stretch marks
» “moon face”–it isn’t too bad, but it is noticable.
» the storage of fat on my shoulders/back
Today I got my blood tested with the dexamethasone. I don’t know how long I have to wait for results, but I am really fighting urges to call my MD immediately. I found this board because I need support. I am nervous for what my future holds because I really don’t want to have ANOTHER brain surgery, but I think all that I can do it be positive and wait. Thanks for this forum!!
I was diagnosed with Cushing’s Disease in September 2012. I started my search for a diagnosis back in March.
So here is how my story goes… in January of 2012, I decided that i was going to change my diet and exercise. I had weight to lose from a previous pregnancy. I began working with a nutrionist and personal trainer. I spent a lot of time working out and logging everything that went into my mouth. I even tracked my water intake. It became very obvious that for a hard as I was working that something was wrong. i was gaining weight instead of losing. I was also feeling very run down. I had also started noticing that I did not have very many patience for much of anything and I felt very uptight about silly stuff. I decided to go have my hormones checked.
At first the doctor told me that I was extremely deficiet on vitamin D and needed to drink a lot more water. He said we need to run more tests. He did a salivary test and some bloodwork to check my corisol levels. On my follow up with him he said that i had very high cortisol levels and wanted to run more test. He then went on vacation for a few weeks. I was unable to get answers from his nurse and then he was so behind when he came back that i could never get an appointment.
I started researching on the interenet about high cortisol levels. Everything that I was reading sounded like me. Weight gain (i had gained 100 lb), exhaustion, stretch marks, blurred vision, high blood pressure, water retention, etc. I found another endocrinologist and made an appointment. I told him all my symptoms and what I felt was wrong with me. He asked me what i wanted him to do. I suggested some of the tests that I had read about because I thought i might have cushings and he said, “ok, let’s get started but, cushings is very rare and I doubt that is what is going on”.
After running blood work, 24 urine test, plus many more test, he told me that I had Cushing’s Syndrome. He indicated that this was very rare and that he had not seen but one case before. He ordered an MRI. The radiologist that read my MRI said that he did not see a tumor. However, he did say that he saw “sinus disease”. Now I have never hear of that so i questioned it. I was told that I would need to go to a ENT doctor for learn more about that.
The endo doc wanted to proceed with the IPSS test. I keep studying on the interenet about the disease and all the testing. I even watched a few pituitary surgeries. I just felt like I need to know everything possible besides, I could not sleep so this was a great way to spend hours. I also kept reading all that I could on this site as well. I met with a local neurosurgeon and he scheduled the IPSS test. I asked him about how we would proceed if my test results showed positive for a pit tumor. I was basically told since no tumor was seen in my MRI that the IPSS test would help them to decided which side of my pit they would take. I was totally not comfortable with just losing part of my master gland. I kept my scheduled test but started to research experts in cushing’s. Then I researched which were covered by my insurance.
In the meantime, I kept the appointment for the IPSS since I didnt want to lose any time. I checked into the hospital and got prepped for my test only to have the doctor come in to tell me that we would not be doing the procedure because the company that made the medications used for testing no longer was making the mediation. Now then, how do you not know this before you prep someone for the procedure?!?! I told the doctor that there were other hospital that were treating cushing patients and were performing this test. I had been reading about them on the boards. He told me that there was not anyone in the US that had the meds. That was when I really knew that I was going to have to leave my state to get treatment.
I called my endo and explained what had happend and asked for a referral to MD Anderson in Houston, TX. I also went online and did a self referral. I just kept following up with them. They have a pituitary tumor board that reviews cases. My case was approved and I had my first appointment in Sept 2011. I spent on day running tests, having an MRI and meeting with the a new endo.
Within 48 hours, he confirmed that I did have cushing’s disease and showed me the tumor on my pituitary. In November 2011, I underwent transphenoidal pit surgery. An 8mm tumor was removed. There was some concern because the tumor was right up against my cavernous sinus cavity. This is where your carotid artery is and the surgeon did not want to get close to this artery.
Unfortunalely, I did not experince a “crash” after surgery. My levels did indicate they were in the normal range so the doctors sent me home with a perscription of hydrocortisone.
I had Cushings symptoms for about 20 years (I am 43) before I finally had surgery at NIH on August 29, 2012. Before 2 years ago, I had never even heard of Cushings. Without the aid of a very perseptive medical accupuncturist, I would probably still be suffering today. Perhaps, if I had heard about it sooner, I wouldn’t have suffered for so many years. My goal is to help as many people as possible in battling this devastating disease.
I am so happy that I have a new chance at a real life! Feel free to contract me. Below is a piece I wrote before surgery and my stats.
🙂 Marian
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My Experience with Cushing’s Syndrome
The changes came about gradually. So gradually, that it is very difficult to pin-point exactly when the overall change became larger than the sum of individual changes and thus was something that was difficult to ignore. For my whole life, I was “Marian” and then one day, I was someone else. I had become someone unrecognizable: the “Not Marian.”
One of my favorite books, “The Tipping Point,” by Malcolm Gladwell, expands on the premise that little changes make a huge difference. Individually, the changes I experienced were easily explained. I was tired. I had nighttime hot flashes. I gained weight. I was moody and forgetful. My sight was blurry. I often typed or said the wrong word. I couldn’t sleep. I couldn’t remove my rings without soaping up my finger first. One day, I forgot how to roll down my car windows. I experienced moments of panic where I was driving and couldn’t remember what road I was on or where I was going. When I mentioned any or all of these symptoms in a group of women over forty, I heard a cavalcade of similar stories, usually expanding into an animated discussion centering on menopause and aging.
I also noticed that I stopped getting compliments. People, except my amazingly supportive husband, just didn’t say that I looked nice or pretty anymore. I tried not to be vain; I thought that I probably had just reached the point where I aged enough that I no longer was going to get the attention that I used to get. I had “hit” the proverbial “wall.”
It is easy to look in a mirror and only see a stylized version of yourself. But, photos are more precise. For some time, I had noticed something “off” in the photos that were sometimes posted of me on-line. They just didn’t look like me anymore. I untagged myself and brushed them off as bad photos with only the vague realization that the “Marian” I thought I was, was no longer me.
My epiphany came in the form of the photos on my work identification cards, taken about three years apart. Not only do I look like I have aged about ten years — I also look completely different. My face is much fuller, my features are distorted, my eyes are sunken, my hair is stringy, and my skin is sallow. I look like a bad photo copy of my former self.
Now, I realize that how I look is a small part of who I am as a person. However, it is also the part of me that everyone sees first. I remember being in the dressing room at Target and catching a glimpse of the “Not Marian” in the mirror. I was astonished at my reflection and cried.
A friend suggested that I just realize that this “Not Marian” is who I am now. I don’t think that this bad advice; it is just advice that is easy to say, but difficult to follow. I often compare my sense of futility regarding my desperate attempts to become “Marian” again to Hercules’s labor of cleaning the Aegean Stables. I exercised four or so times a week. I went to a diet doctor. I ate under 1200 calories a day. I bought new clothes. I got my nails done. Despite these efforts, I only saw minor improvements in the way I looked and felt. I still felt as though I was always wearing a rubber suit over my skin that covered my former self.
In many ways, the diagnosis of Cushing Syndrome was a relief. Finally, there was an explanation for the way that I felt and, though serious, Cushing’s is generally a completely curable disease. But, knowing I have Cushing’s presents another problem, when is it appropriate to tell peop
My initial inclination was to tell everyone. I wanted to explain the difference between the “Marian” you remember and the “Not Marian” that you see now is a result of this rare disease I have. “It’s not really me! It’s the Cushing’s.” I tried it a couple of times with mixed results.
Mostly, people said that they had not noticed a significant change in the way I looked or behaved. My closer friends were more tolerant, expressed concern, and asked questions. The reality is that nothing (except maybe vacation recaps) is more uninteresting in light conversation than talking about illnesses and ailments. And though it was significant to me, the changes were not readily observable. So, I will try not to talk about it.
I know that my upcoming surgery is not a panacea, though it is nearly impossible not to view it as such. I have scrolled through hundreds of websites and blogs looking at photos and reading synopses of people before and after treatment. I have connected with someone who was successfully treated for a Cushing’s syndrome through Cushing’s Support and Research Foundation. Ultimately, my hope is that the loss of me is only temporary and that through successful treatment of the disease; I can begin to feel like “Marian” again.
STATS
July 2010: MRI at Kaiser showing a pituitary adenoma. High 24 Hour cortisol. Low DHEA. Low ACTH. Referred to NIH.
Late July 2010: CT at Kaiser showed “suspicious” tumor on left adrenal. (High HU, e.g. cancer)
Sep 2010: NIH testing.
Nov 2010: NIH re-read the results of CT and MRI. NO pituitary adenoma and BENIGN tumor on left adrenal.
Dec 2010 – April 2011: Unable to replicate high cortisol test at NIH. Diagnosed as pseudo Cushings due to stress. Yearly follow up recommended.
April 2012: Follow up testing at NIH. Cortisol is high. CT of adrenal tumor is stable.
June 2012. Second cortisol at NIH is high. Diagnosis cyclical Cushings. Will not operate. Note that I do not look like clinical Cushings, so that was part of the problem.
July 2012: Bone density loss of 25% in three years confirmed through Kaiser. I happened to luckily have had a previous bone scan so that they could compare. The current bone density scan wouldn’t have been enough because I didn’t have osteoporosis yet.
Aug 6, 2012: Referred for surgery on Aug 27.
Aug 26, 2012: Enter NIH. Surgery postponed but I can’t leave because of the testing!
Aug 29, 2012. Surgery! The surgery itself was easy.
Sep 2, 2012: Left NIH
Returned to work half days Sept 4 and full time Sep 10.
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