I was diagnosed with Cushings in Feb 2011 at the age of 30, after 6 months of inconclusive testing to find out what was going on with me. Bone marrow biopsy, CT scans, MRI’s, urinalysis, bloodwork, you name it, it was done. The first symptom I noticed was my left foot swelling (edema) after a workout injury. The swelling remained long after it should have, and I thought I damaged my lymphatic system. A trip to the endocrinologist and a CT scan proved that untrue, but he did notice I had an enlarged spleen and a high red blood cell count. He didn’t seem to think that was a concern, but around that time I also began to experience a constant pain in my right flank. So I went to a gastroentrologist. Then a hemotologist, then a cardiologist, etc. My final diagnosis came after my hemotologist ran a urine sample and noticed a highish level of cortisol. She sent me back to my endocrinologist. Before I went, I started a heavy Google search for what high levels of cortisol could mean, and came across Cushing’s. I knew that was what I had. I had been diagnosed with a prolactinoma 4 years prior (which I had told every doctor I had seen) and no one made the connection. I demanded my endo test me. He didn’t want to, telling me that I hadn’t gained weight and that people who had Cushing’s were really sick. I demanded, and he gave me a supression pill to take the night before I came in for bloodwork. He called me with the results a couple of days later, accusing me of not taking the pill. Of course I took the pill, I said. He said that the pill hadn’t suppressed my levels as it should have, but he didn’t believe it, and wanted me to then do a 24hr cortisol urinalysis. I agreed, but also scheduled an appt with a neurosurgeon. The neurosurgeon had the same hesistation, but also did the 24hr test. A week later, the tests came back in. My cortisol levels were 8 times what they should have been. I definitely had Cushing’s.
I had transsphenoidal surgery a month and a half later. I spent a week in the hospital that can only be described as hell. My body crashed hard and every part of me ached. The next four months proved equally as challenging, my energy being non-existent and my replacement dosage being difficult to keep correct. But a year and four months later I’m very close to being off the replacement dosage, and feeling back to normal. Thank goodness for Cedars Sinai pituitary center for their attentiveness and care.
The biggest lesson I learned was to trust yourself. I did not gain weight when I was sick. I did begin to develop a moon face and a small tummy, but my weight remained constant. I was waking up at 3 in the morning every day, my blood pressure spiked, my muscles weakened, I bruised easily, I lost hair on my head, my skin became mottled and thin. I don’t know if the weight gain would have happened eventually or not, but I truly believe I wouldn’t have stayed alive long enough for that to happen… the change from healthy to sick happened so rapidly in my case that if it kept up I doubt I would have lived much longer that a year or so. I worry about recurrence every day, and have had numerous visits to the ER since surgery due to adrenal crisis, but at least I know what to do when that happens and can take care immediately. And as I’m sure most of you would agree, I treasure every healthy day.
I was a member here a couple of years ago and told I may have Cyclic Cushings.
I went 2 weeks ago today to LA to see Dr. F and he suppects Cushings and HGH defiency. I have not started all of my testing yet as insurance has been a problem, but I am going to my Internist tomorrow and see how he will help me.
I will update as I can and apprciate any information.
I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.
Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.
I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery in 1987!
When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.
Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!
I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.
My name is Jane and I am 76 years old. I was recently diagnosed with Cushing’s Syndrome after years and years and years of suffering symptoms.
My doctor for the past 7 years said that I had pre diabetes, high cholesterol, high blood pressure, chronic kidney disease, fatty liver, asthma, emphysema, obesity, anxiety and depression. She missed that I have actual diabetes and often told me that if I would only eat right a lot of these problems would go away. She missed the leaky heart valve, COPD, and most important, the Cushing’s.
in 1997 another doctor told me that I had a harmless tumor on top of my kidney. He said it was nothing.I shouldn’t worry about it, just forget about it, it was nothing, That was about the time my weight began to go out of control. So for at least 30 years I have not known what was wrong with me.
I spent 2 weeks in the hospital with depression while on a 600 calorie diet and I gained weight. My new endocrinologist said he was scared when he first saw me. But he has promised to take care of me because nobody else has. He has started me on Korlym and I was feeling a lot better at 3 weeks, after losing 17 pounds with no effort. Now though, I have started a new trial. This new drug does not block the progestin so in the long run will be better for me.
I developed severe asthma 6 years ago. At that time the pulmonary doctors put me on high dose steroids, and I have continually been on high dose steroids since then. As a result, I now have Cushings,addisons and type 2 diabetes. I have tried so many times to get off the steroids but I end up very sick and hardly able to breathe. I’m searching for help.
I hope someone is out there in my shoes so you can tell me how you are coping with this disease.
I was diagnosed with Cushings in 2005. I had surgery in 2006 which required my lower right lung to be removed. Mine was rare because my symptoms cycled.
After having surgery in April of 2006, I was doing very good. All my symptoms went away, I lost weight, worked out and had few bad days. However, 3 years ago, I started feeling fatiqued and sick a lot. Now, about 6 months ago, almost all my endocrine problems are back. I’m not showing any outward signs though..
I’m seeing my Endocrinologist again and being retested because now I am not doing good at all.
I have Cushing’s disease cause by a pituitary adenoma and had unsuccesful pitiuitary surgery in AUg 2013.
Since then cortisol levels have not reduced sufficiently and the two options I have been given are further pituitary surgery to remove the gland or a bilateral adrenalectomy – but of which I don’t want.
I still haven’t had children and so don’t know the implications there as well as the long term impact on my life with such drastic measures.
Keen to see if anyone has been in the same situation and from a patient’s perspective what are the experiences. Doctors think they know the best solution but I have proven I am not a text book case
I did try Cabergoline for awhile and it worked but then stopped really having a effect and Pfizer has stopped production recently
My name is Pat Gurnick. I had a Pituitary Tumor (Cushing’s Disease) removed (Macro 1.4 size) by Dr. Kelly at UCLA.
This has been a long journey for me. In 1990 I was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia, and Environmental Illness/Multiple Chemical Sensitivities. I was a Needs Assessment and Referral Counselor at Charter Hospital. I than went to work for Brotman Hospital as a Drug and Alcohol Counselor, with their day treatment program for Chronic Mentally Ill Substance Abusers, but by 1992 I was so ill I went on disability. I could not read or write for over a year, so sick. I started a support group, WEBSITE and phone hotline in 1993, to give myself a reason to live. I had such cognition difficulties and fatigue, to name a few symptoms, that I don’t honestly know how I achieved this!
In 1994 I thought I was in remission, little more functional and decreased Fibromyalgia pain; yet, I also went through premature menopause at that time, age 35 (I am 45 now), which I now found out was the cause and beginning of a Pituitary Tumor/Cushing’s Disease! I was single and I had no children. My doctor figured this is when the tumor developed/high cortisol, to compensate for my crashed adrenals (HPA Dysfunction common to CFIDS Patients).
I tried so hard to lose the weight all those years, and the past few years people were always asking me when I was “due” for my stomach was so distended. In addition, I was anxious and depressed, experienced nausea most of the time, facial hair, moon face, hump/fat pads ,and many of the other Cushing’s effects. The Rheumatologist just attributed this all to getting older and osteoporosis (which I had a severe case by this time due to Cushing’s – little did I know!).
No one picked up on the Tumor situation until last October, 2003. I had other health problems, especially mold injury (from water damage in my home) and had to leave with basically the clothes on my back in August. My life was upside down. I was stressed and went to see a chiropractor to ease my tight neck. I knew something was wrong when the x-rays showed fat pads not bone as my old Rheumatologist had claimed.
By October 2003 a New doctor (been to so many through these years trying so many things to get well) wanted me to have an MRI done when I showed him my x-rays and told him of my concerns. I was not willing to give up and attribute it to old age! He stated he thought I had Cushing’s disease and wanted to test me. The tumor was clearly seen on the scans, and Cushing’s Disease confirmed. I had gained 40 pounds by this time, and looked totally different, as you can imagine.
After I was diagnosed, I went to many healers, tried holistic things, which didn’t heal me, but got me in good shape for surgery a year later. Thank God it was a slow growing tumor, because it was close to my eyes and sinuses, and waiting any longer would have been detrimental to my health. I had surgery performed December 17, 2003, at UCLA with Dr. Kelly. He has been very kind and patient with me while I tried alternative treatment, knowing surgery would be eminent.
As for my hospital experience, 2x’s I had adrenal insufficiency and was terrified. I had no idea what to expect, fainting on the floor, staff all around me when I woke up, going in and out of consciousness, frightened I would go to sleep and never wake up, wanting to throw up all the time, could not walk, dependent on oxygen mask (trouble breathing) and I.V., using a bed pan, and had a longer stay than anticipated. Plus, hurting from stitches on my stomach, and was told was used for fat during surgery; had cerebral brain fluid leakage and titanium mesh was placed in my head. Little did I know that was only the beginning. I did not understand the post-op situation (cortisol withdrawal symptoms, medication side effects, emergency bracelet, light headedness, to name a few).
So, I have been looking for answers and finally found you all! I am not alone! It is ONE DAY AT A TIME now, and I am looking forward to better days ahead.
Update: April 15, 2004
I am a wreck since surgery, going from depression to anxiety, hormones bouncing off the walls. hot flashes, cognition problems, incontinence (cortisol weakens muscles including the bladder), and sometimes crippled to the point I cant even stand to brush my teeth. I am struggling with continual weakness, edema, painful/swollen hands and body. Now, ailments are popping up as the high cortisol decreases in my body. I have a fatty liver and gallbladder disease (cortisol can do this), Rheumatoid Arthritis (Cortisol can do this break down the muscles and joints), heart irregularities, high cholesterol, to name a few. Cortisol can cause so much damage, and I feel like I am left in pieces all over the floor, running from doctor to doctor to patch me up. Having little energy but dragging myself all over town to find some relief; hoping for a solution.
I have only lost 5 pounds but my mustache is gone, which is good news. Plus, my osteoporosis has gotten better and is now osteopenia status; in such a short amount of time. Taking out that tumor saved my life!
Update: December, 2004
It has been a year since my pituitary surgery. I have lost almost 40 pounds. I think more clearly and feel more confident. Look like a real woman again! Sure, I still have my mood swings, cortisol still low (but off cortef now), have phsycial pain (decreased 60% due to Lexapro antidepressant), fatigue (limits me on some days), and need to monitor my stress level or my immune system goes down quick and I get sick. My body is not the same. I am way more sensitive. But, I changed my lifestyle to fit my needs. I moved from Los Angeles to Boulder, Colorado, for the slower pace and beautiful mountains. My adrenals are not strong, and I have to be careful to take it easy or I have symptoms of adrenal burnout. However, I am so glad to be alive, mentally functioning, and taking walks again in nature!
Dr. Kelly at UCLA was fantastic, and I will always be grateful for his excellent expertise in ridding me of the tumor. I have a new chance in life. I do look over my shoulder, ever reminded that it can come back, having tests every 6 months for years to come. But, I have learned from this experience that really life is to be lived one day at a time anyhow. Appreciate each day as it comes, living in the moment, making the best of the time I have.
I look at life and love differently now. I left a stuck relationship, moved to a place that will bring me more peace and joy, empowered myself, being my best friend, having more fun and laughter in my life. I plan on continuing with my goals, which were stopped by the tumor, doing what matters to me instead of being co-dependent. I am important. I deserve the best. I have been given a 2nd chance and I will take it for all it is worth!
Update: September 16, 2007
There isn’t a day that goes by when I don’t think of my experience with Cushing’s Disease. I remind myself that I don’t have the tumor anymore, than I look out at the sunshine lighting up day and take in a breath of fresh air, so grateful to be alive.
Yes, I catch myself from wandering back to the Cushing’s memories: when I felt like a Cherub, blown up and uncomfortable in my own skin, emotional, feeling like my blood was racing in my veins, breaking my toes, pimples like a teenager, and the dark mustache I knew everyone could see! I still look for those returning signs, relieved that they have not come back. I was told by my surgeon, Dr. Kelly, that the tumor would not return. When fear grabs me, during infrequent times of fatigue and a rush of anxiety, I reassure myself that these are only aftereffects not the tumor returning. I have my cortisol levels tested every year to confirm this fact, and my levels are normal. However, I went through ‘Post Traumatic Stress Syndrome’ from all the medical trauma I endured! It took 8 years for the doctors to finally diagnosis this disorder! You can imagine all the ailments they told me I had or that it was all in my head. I was running around to doctors begging for answers but feeling so discouraged, hopeless, and helpless. I tried many medications hoping for a solution, but none came. I did many holistic treatments, to no avail. Little did I know that I suffered from Cushing’s Disease/Pituitary Tumor!
One day I walked into a Rhumatologist’s office, Dr. David Hallegua, seeking help for my Fibromyalgia and Chronic Fatigue Syndrome, and the doctor exclaimed I also had Cushing’s Disease because of the obvious physical signs I exhibited. This is all a memory today. The once obvious ‘fat’ humps on my shoulders and neck are gone. I dropped most of the weight, my face structure is visible again, my hair healthy as is my skin, my moods finally balanced from the ‘bipolar’ roller coaster of emotions I previously tried to control – time healed this (I am not on any antidepressants), and my hormones are balanced without hormone replacement therapy. I know how lucky I am, believe me, I am thankful!
Yes, I have realized this illness has also given me an amazing gift, one of appreciation for every bird in the sky, every flower that bloomed, every whiff of baked bread, everyday I could walk by the Boulder Creek with vigor, and how I gradually was able to retain information to the point that I could multi-task again! Each little thing has been a blessing. I have much gratitude for being alive, remembering the days when I had Cushing’s but didn’t know it and negotiated with God dark agreements…looking back I am glad that I didn’t follow through. What lesson’s has this teacher left me with? I live in the moment now, present, not running to the past or the future, just appreciating today. Ah, I have today to live! I have come back into my body, proud of my curves, my soft skin, my long hair, my searching eyes, feeling the calm peacefulness that rests in my heart, and the relaxation in my body. It feels good to experience positive sensations, wanting to walk again around the block, to go shopping for clothes, taking a swim in the heat of the summer, all dressed up going to a dinner party with friends, taking meditation classes at the Boulder Shambhala Meditation Center. I have a social life again! For so many years I hid in my house, heavy, unhappy, and discouraged. I didn’t know I had an illness, and all I thought was, “who would want me like this?”. Yet, there was a sliver of hope, for I never stopped trying to figure out what was wrong, desperate to find a solution, knowing all along that I was NOT just fat and growing older, at the age of 35! My body was betraying me, that was clear. The lesson, to not give up, to have faith. My warrior came out in me. I became a stronger woman through all of this, and moved through the challenges that were dropped in front of me, bomb by bomb. I came through the surgery with flying colors, hard but I did it! Winning round one! Round two, dropping pound after pound of fat. Round three, learning how to walk and breathe easy again. Round four, winning the grand prize, learning how to relax, and to be happy that I am alive.
I was able to provide counseling services again , and opened my Psychotherapy practice in Boulder, Colorado, older and wiser. I specialize in helping those who are challenged by Chronic Illness, by phone, in person, or in the client’s home if they live in the Boulder area. I can always be reached at 303/413-8091 pat@caringcounselor.com
There is life after Cushing’s Disease!
Warmly
PAT GURNICK, CLC
Certified Lifestyle Counselor
Psychotherapist www.caringcounselor.com
Glad to be alive!!! September 2007
Pat’s photos:
The only picture I have after Cushing’s,
a number of years ago,
gained 25 more pounds since then. [Photographer: Pat’s family]
Picture of me and my sister at Thanksgiving – right before surgery. [Photographer: Pat’s family]
Picture of me at home, right after surgery, with my kitten sleeping on my stomach. [Photographer: Pat’s family]
Picture of me with my Cat JACK 4 months after surgery.
You can see my face has gotten thinner, but my body is still Cushy. [Photographer: Pat’s family]
April 2006 [Photographer: Pat’s family]
Glad to be alive!!! September 2007 [Photographer: Pat’s family]
Update January 25, 2016
In 2010, I had a near death experience from dehydration and ended up in the ER with Secondary Adrenal Insufficiency. See the video I created at that time:
I notified NADF (National Adrenal Diseases Foundation) that Cushing’s patients suffer and need to be recognized through their organization with this serious life threatening condition: Secondary Adrenal Insufficiency. As a result, the Medical Director,
Dr. Margulies, MD, developed a brochure on Secondary Adrenal Insufficiency:
Stress dosing and recognizing Adrenal Crisis symptoms is most important. Today, I have a better understanding and can recognize the symptoms of dehydration, and I am more prepared to double my hydrocortisone medication under an emergency situation (often for me it is the flu) or stress.
After my surgery in 2003, I was able to provide counseling services again, and opened my Psychotherapy practice in Boulder, Colorado, older and wiser. I specialize in helping those who are challenged by Chronic Illness, by phone, Skype, in person, or in the client’s home if they live in the Boulder area. I can always be reached at 303/413-8091 or pat@caringcounselor.com
Gina Gregoire Helton is certain if she had a dollar for every time she has heard the word “rare,” she’d be a rich woman.
She has a lot to be thankful for. She’s been married to Sean, the love of her life, since 2011. She has a warm, gregarious family consisting of eight sisters, three brothers, over 30 nieces and nephews and two loving parents, Charles and Denise Gregoire of DeWitt.
But in April 2012, Helton started to experience disturbing symptoms. She had sudden-onset hip pain. A few months later, she had unexplained hair loss and breakage. Deep, red and purple stretch marks, also known as striae, started appearing on her skin.
They were painful and she credits them for essentially saving her life.
“They were the ‘red flag’ that something was definitely not right,” Helton says.
She went to see her doctor, Dr. Jennifer Bell at Genesis Health Group in DeWitt, who admitted she was stumped. Yet, based on the presence of the striae, Bell wanted to test one more thing – Helton’s cortisol levels.
Cortisol is a life-sustaining adrenal hormone that influences, regulates or modulates many of the changes that occur in the body in response to stress. Those changes include blood sugar (glucose) levels, fat, protein and carbohydrate metabolism to maintain blood glucose; immune responses; and anti-inflammatory actions.
As it turned out, her levels were abnormally high. Bell referred her to a specialist in the endocrinology department at University of Iowa Hospitals and Clinics (UIHC) in Iowa City. Cortisol levels fluctuate throughout the day, but further testing showed Helton’s levels consistently remained extremely elevated.
That was the first time she had ever heard of Cushing’s disease.
Helton had nearly every single symptom of the disease that affects less than 200,000 people in the United States.
In addition to hip and back pain, hair breakage and stretch marks, she suffered from moon face, frequent bruising, depression and anxiety, weight gain, frequent urination, high blood pressure and muscle atrophy.
“I was extremely relieved to have a diagnosis,” Helton says. “At the same time, I was scared as I started to learn more about Cushing’s disease and what it can do to your body. There are people dying from this because of improper diagnosis. I was blessed my doctor at UIHC was educated on the disease.”
Most individuals diagnosed with Cushing’s have a tumor on their pituitary or adrenal glands.
Helton’s tumor, however, was located on her lung. Fortunately, her doctor decided to scan that area of her body and discovered the tumor.
In November, Helton underwent surgery to remove the tumor in her chest. However, during the procedure, some microscopic-sized tissue was left behind. So, in January, she found herself in the operating room once again. However, in order to get rid of the remaining tissue, the surgeons’ only option was to remove Helton’s entire left lung.
The situation went from bad to worse when it was discovered the tumor was malignant. It was a very rare tumor called a carcinoid tumor. These tumors are slow-growing cancers that typically start in the lining of the digestive tract or lungs.
After they took her lung, doctors noticed the cancer had spread to her lymph nodes. Members of the oncology department recommended chemotherapy and radiation as treatment.
Because her particular condition is so rare, doctors cannot say definitively what Helton’s prognosis is. Living with only one lung, her physical activity is restricted. Yet, Helton is partaking in water exercise to help ease the pain in her hips and keep her muscles strong. While climbing the stairs is a major obstacle, she intends to participate in the next Fight for Air Climb in Des Moines sponsored by the American Lung Association.
It may take her longer to reach the top than most, but she has made it her goal to finish.
Helton also plans to become an advocate for the Cushing’s disease community. She has yet to meet anyone else in person who suffers from the condition, but has connected with hundreds of them through social media.
In particular, Helton has made contact with Dr. Karen Thames from Chicago. She has been diagnosed with Cushing’s and is working on a documentary called “The War to Survive Cushing’s Disease.”
Helton says the experience has dramatically changed her attitude and outlook on life. She no longer “sweats the small stuff” and her relationships with her loved ones have become stronger.
As for people who are experiencing any of the symptoms associated with Cushing’s, Helton encourages them to seek help.
Even if there are no immediate answers, don’t give up.
“If you are experiencing something with your body that doesn’t seem right, keep seeking help. There is a doctor out there somewhere that will help you. We all know our bodies and when something is wrong.
“My faith and relationship with God has grown tremendously. I count my blessings daily. That is the silver lining. My favorite quote is, ‘Everyone you meet may be fighting a battle you know nothing about. Be kind. Always.'”
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