The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001. This Golden Oldie was last updated 06/19/2008.
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December 28, 2002
HOW TO HAVE FUN WITH A BRAIN TUMOR
A Pituitary Party with a pituitary-shaped cake, complete with tumor of a different-colored icing, a pituitary hunt for the kids, a raffle to benefit the Wellness Community (a cancer support group), and a contest for the most creative object to be inserted inside my head in place of the removed pituitary tumor were ways in which I distracted myself from the terror of brain surgery. I hired a story-teller, who wrote pituitary stories. I bought the game, “Cranium”, to give as prizes for the winner of the replacement-object contest, and my caterer created pituitary-theme foods: pituitary pasta, cerebral cucumbers, and had a cauliflower simulating a brain decorating the table along with a scarecrow who displayed the sign, “If I only had a brain…”
My pituitary party invitation read:
As you may or may not know, I have been diagnosed with a pituitary adenoma, a small brain tumor, and am having surgery on April 3rd. I have decided that one thing you can do for me is help me have fun with my brain tumor. Traditionally, brain tumors have been viewed as undesirable, somewhat dreaded, and even potentially life-threatening. They’ve gotten a bum rap, in my opinion. I think they give life a purpose (survival with a few brains intact) and give their bearers something to talk about, but better yet, laugh about.
Dan Gottlieb, a Philadelphia Inquirer columnist, in his April Fool’s column on the importance of not taking oneself too seriously, gave me and my party a notable mention, resulting in all of Philadelphia knowing about my surgery and many expressions of support and concern.
Indeed, contemplating death and disease is not the way I most enjoy spending my time, although I did a fair amount of that too. But throughout my illness and recovery, I have attempted to make the most of the cards I have been dealt.
Other health-promoting strategies I have used included:
regular mass e-mailings to my close friends to keep them apprised of how I was doing so they could best offer support; contacting everyone I could think of for recommendations and information on doctors finding and conversing with fellow patients on-line in the chatroom for people with my illness, Cushing’s Disease using hypnosis, yoga, exercise, acupuncture, massage, Gestalt, and energy-work as adjuncts to my medical treatment re-entering and using psychotherapy to support me emotionally through the process of illness and the stresses of medical treatment (In Gestalt therapy, I spoke to my tumor and my pituitary and came to understand their function in my life: I had a hypomanic pituitary mimicking my own sometimes hyper-functioning mode of living.) joking with people as much as possible about brain tumors to facilitate comfort of myself and people providing my care from hospital registration personnel to my brain surgeon carrying with me at all times the small objects people offered to me as brain-tissue replacement wearing a donut-like pendant covered by a symbol of a healer as a reminder of my brain with a hole in the middle healing
Unfortunately, my surgery was unsuccessful, and I faced a decision between a second surgery or radiation treatment. I did not find this funny. In fact, I was pretty demoralized and said so in an email to friends and colleagues, again inviting humor. One of my colleagues placed a request to the entire international mailing list of my Gestalt therapy colleagues on my behalf, saying she had “an ill friend in need of humor”. In came jokes from around the world – about fifty pages of them – which I read to my driver enroute to my gamma knife radiation treatment in another state. We laughed our way there and back!
Life is what it is. We get what we get. And we might as well enjoy it!
The author, Dori Middleman, M.D. is a child and adult psychiatrist in private practice in Merion, PA. She has a musician/conductor husband and two children. She was diagnosed with a pituitary tumor causing Cushing’s Disease in November of 2001.
Hello everyone, My name is Kristina and i am 21 years old.I am so happy that i found this site because there are so little information about Cushing’s, especially real people stories. If not internet or tv i still wouldn’t know what is happening with me for a quite long time.
Hm i don’t know where to start, as a kid i always was very thin, and everything started changing when i was 11 or 12 years old i started to gain more and more weight, and after few years was diagnosed with hypothyroidism, i took medicine and lost my weight , but when i was 15 everything started changing again but much worse, i was always hyperactive, happy, enthusiastic, always got best grades and ect… i was always depressed, always asleep, feeling dizzy, everyday felt exhaustion, i even started missing schoool , didn’t even went where because i didn’t had energy to get up from bed and get dressed, and also with +66lbs i really didn’t wanted to show my face anywhere. And everyday everything get worse and worse, because of all this lack of energy and motivation i quit law studies, and then other studies, i don;t have energy to do simple house chores, my muscles always hurts, my head everyday hurts, i can’t sleep, i still get on weight every week almost, i have 800 kcal diet, and do some exercises, and weight still puts on… my hair is so ugly, my skin is very dry i got eczema that my skin doctor can’t cure, i broke my kneecap with very light impact i have many many other problems, and when i saw this on house md and mystery diagnosis i started my reseach on internet and library, i took very hard road that my endro would write prescriptions for all blood tests and MRT and now i am waiting for results and am very be anxious and have still many many questions.
I know that all cases are different but maybe someone could share, if after treatment or surgery, how hard is to loose weight, and not feel tired all the time? what to expect?
I was diagnosed with Cushing’s last November and had surgery to remove the pituitary adenoma in March.
It took me FOREVER (over 3 y) to get a diagnosis. None of my doctor’s would really listen. I was SO frustrated but kept on pushing because I KNEW something wasn’t right. Pre- surgery I had excess hair (facial+), weight gain (abdominal), stertch marks, fatigue, very irregular menstrual cycle…..Now that I’ve had the tumor removed I still have problems.
I’m hoping that some of you will help me to answer those questions/problems. My facial hair has slowed down, I’ve lost over 65 pounds in 3 months, I’m going through menpause now (I’m 36yo), my hair is starting to fall out, I have NO energy/fatigued all the time, some days I wake up OK and others I wake up vomiting or very unsteady like I’m going to pass out if I’m on my feet for too long. I am very depressed.
My life has fallen apart. My marriage is over, I have had to move in with my mother, I am unemployed, and I can’t do the fun things that I should be able to do with my 8yo daughter. I have no friends and my family is not supportive at all. They say I just need to get off my *ss. I’m tired of people blaming depression, laziness, etc. I want my life back.
I need help and don’t know where to turn. I hope that I can learn what I need to do solve these problems and meet some people who can send some sunshine my way.
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
After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!
During her too-short life, she provided help and support to other Cushies.
Hi y’all! I will try to make this short, but there is a lot to say.
I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.
At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.
Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.
Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?
Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.
At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.
At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.
Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.
At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.
Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.
So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.
By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?
Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.
I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.
In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.
But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)
Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).
Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.
When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.
Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.
Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”
Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?
I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.
I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.
So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.
And, I’ll keep you posted.
Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.
Be well, my new friends,
Kate
p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.
Another Golden Oldie, this bio was originally posted 01/22/2008
Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.
I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.
Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.
In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.
After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.
I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.
Oregon Health Sciences University. (Photo credit: Wikipedia)
That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.
In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.
I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.
Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.
Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.
I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.
Sarah recently had surgery to remove a tumor from her pituitary gland in the hopes of treating her Cushing’s Disease. She died on June 13, 2011 after a brief illness at the age of 28.
More information will be provided when it becomes available.
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Sarah F’s mom posted this: “we will be setting up an account at the royal bank tomorrow afternoon for sarah. we are planning on having a bench put in her name at transfer beach in ladysmith after we get her home. if you would like to help you can make a donation instead of sending flowers. we will post when we have everything set up. thank you everyone for your support and kind words for sarah…..”
Also from Sarah’s mom: “a account is set up for sarah fraik at any royal bank the number is 02000 5000823 any donation is welcome to help with bringing sarah home and getting a bench with her name put on it at transfer beach ladysmith thanks everyone.”
Beth Grant writes: “I already have asked her about how people from out of the country can donate and I’m still waiting to hear back. But my offer also stands to have people paypal me or send cheques and I can just go to the bank here and deposit it to the account. There’s an option to Send Money, so you just click on a few things and it gets sent. I’ve sent and received through paypal many times and never had trouble.”
Last night I was at an open-air concert; and while waiting for the show to start, I was unexpectedly faced with mortality. Everyone at the show was fine, but when I was reading social networking posts, I kept reading people’s messages of peaceful rest to a woman I didn’t know; but I could totally relate to her struggles with a rare disease. Sarah, a young woman dealing with the effects of Cushings Syndrome, passed away from a head cold- a medical complication at the ripe old age of 28. I didn’t need to know Sarah to know that this was just wrong!
Based on what I have read from many of Sarah’s friends, I got a brief snapshot of the situation. Not only was she a very special woman that many people loved, her passing was made more tragic because maybe it was avoidable. It seems that several people were concerned that the quality of her medical care was at least partly to blame for her early passing. Now I did not know Sarah or her issues to agree or disagree, but it brings up a really important topic of discussion for the rest of us: what is a good relationship with your medical professional? For those who are unfamiliar, Cushings Syndrome is a hormonal disease that impacts people who have a consistently high exposure to cortisol (a hormone released into the body as a response to stress). I have had cause to learn a lot about Cushings because of the number of Acromegaly patients who have to juggle the effects of both diseases.
While I know this discussion can be uncomfortable, I would like for you to ask yourself honestly: DO YOU TRUST YOUR MEDICAL PROFESSIONAL? Please understand the question I am asking is different than whether you like your doctor. While it is nice if you like your doctor, it is not as critically important that you like your doctor, as it is that you trust him or her. I promise you that I am not golfing buddies with any of my medical professionals; but… I am confident that they are providing me with the best possible medical care I could ask for, without my traveling to a dozen other cities. Ultimately, this is an essential question you need to answer for yourself because your answer can directly impact the quality of your health care, and therefore the length and quality of your overall life.
Now does trusting your doctor mean they know everything there is to know about all things medical? NO! Just because you trust your doctor or nurse does not guarantee that they know everything about every disease you may ever have. Willingness to learn accentuates, not lessens a doctor’s credentials as a diagnostician. Many of us have had cause to teach our doctors something about our disease not covered in the textbooks yet. When I was growing up, I knew a doctor’s wife who used to love to joke that ‘that’s why it’s called practicing medicine. They have to keep trying till they get it right.’ It is impossible for any one medical professional to know everything about everything. The question you need to answer for yourself is whether you trust them to listen to what you say and help you to make your life more pleasant, because of or in spite of your medical situation.
Sadly, for some of us, our medical issues are not a joke but a depressing reality- that we have to go years before we find the right medical professional who can both treat us medically AND handle our personalities in a way that will help us to trust our doctor/nurse/physician assistant.
Now, if it is true that the doc is merely practicing, why is our trusting them so essential to the relationship? That is simple. Honesty. If you are anything like me, you would rather go to a medical office than a psychic for your medical care. If you are withholding from your doctor, for any reason, you are detracting from your own medical care – and making it nearly impossible for your doctor to properly treat you! I am not saying you should call your doctor’s office because you stubbed your toe getting into bed last night and your nail is bruised in the morning, but if you stubbed your toe last night and you were in so much pain that you woke up and took seventeen aspirin, this is an issue worthy of a chat. Your medical professionals need to understand who you are, how you feel, what your pain threshold is, and how you manage your medical issues when he or she is not around (yes, this means your OTC treatments AND if some of your self-treatments do not necessarily come from recognized pharmacies- while this may be an awkward conversation and you may get scolded, such decisions by you can effect your treatment too!). Medical professionals and their patients must know they can trust each other.
Ultimately, we are the patients- its kind of like being the customer at a store. If you want to do hours of research before you buy the best can opener, or if you want to consistently look over your doctor’s shoulder, that is your right; but ultimately you need to have faith in the purchase you make at the store, just as you need to have faith in your doctor’s course of treatment. If you do not feel comfortable enough doing that, then you have a decision to make: is your lack of trust in the doctor their fault, or is it yours (as the patient)? Again, not an easy question to honestly answer, but essential in our long-term well-being! If you have been withholding too much from the doctor, waiting for the doc to miraculously figure out what’s wrong seems both unlikely and unfair- and largely a mess of your own doing. Going to another doctor is simply going to slow your treatment, and likely perpetuate the problem. It is not the doctor’s fault that you are not honest with them about your issues. Open up with your doctor and have a frank discussion- see where things go from there. But if you are honest with your doctor, and you still feel like the doctor is either uninterested, unable or unwilling to figure out your issues, or is flat out too busy to give you the focus you require and deserve, well then you need to look at possibly seeking a new medical professional.
Just remember, starting with a new doc can be difficult. If he or she is popular, you might wait at least a month or two just to get that first appointment where no treatment might legitimately get started. During this time that you wait, your issues are not being treated at all. On top of that, you and your new doc both need to figure each other out, and again you need to try to build that trust and understanding with a new doctor and staff, working toward a momentum of medical stability. All that being said, if you are not happy, and are ready for the switch, then go for it! Remember, you are most responsible for your own medical care, since you are the person most greatly invested in your own well-being! Don’t stay with a doctor simply because you are afraid to leave. If you are ready to move on to a new doctor’s office, just make sure you are doing it for the best reasons. Hopefully your new doctor’s office will offer you the ability to trust and be totally forthright.
I am just saying that if you are dealing with some sort of extraordinary medical condition, please invest your time to be totally honest with your physician(s). Talk with him or her in a frank and honest way. If your disease has major issues that are kind of sensitive to talk about, and you are afraid to talk face-to-face with your doctor but feel you can be more frank with the nurse or physician assistant, then do that! If the issue is particularly awkward for you, then at the very least, keep a journal and share that with your doctor’s office. At least the information is being conveyed. While there are preferred methods of sharing, getting the information is more essential than the method of delivery.
I don’t know what the facts are that surround Sarah’s case, but it is a tragedy any time a 20-something person passes away. Don’t let her passing be for nothing. We can learn from her. Take care of yourself medically, and work to foster a relationship of openness and trust with your medical professionals. Without trusting our medical professionals, how can we expect them to treat us in a way to actually improve our health? And at the end of the day, what is more important than our health? Dare I say it… nothing.
Hi my name is Kristi and I’m seeking any help or advice on Cushings.
I had always been active growing up into sports, running, weight lifting and horseback riding.
27 Yrs ago I gave birth to a beautiful healthy daughter. I was a size 10 and had only gained 25 LBS during prignancy. Less then a year later I was carrying my second daughter. I had no appetite and could barely eat but was gaining 10 pds every other day. My blood pressure soared and I was diagnosed with pre-eclampsia. I have been sick ever since I gave birth.
In the past 20yrs I have put on over 150 lbs and I can’t get it off. I was told I had a fatty liver and my cholesterol and triglicerites are off the chart. I began having memory trouble even forgetting my daughters name, hair loss, blurred vision (even typing this is slow going so forgive any mistakes) I started falling, loosing bladder and bowel control, walk into walls, tables and door frames/ I’ve had bouts of blndness and layered viion (Multiple Sclerosis has been ruled out) chronic body and nerve pain, horrible mood swings from happy, depressed, anger, intolerance (it’s like a daily rollar coaster ride) SEVERE salt cravings, low body temp, heaviness in legs, bruising, infections, trouble healing, brain lesions., trouble sleeping. Get cyst on my breast, head, ears and pubic area. Have little hard bumps on pubic area that never go away. No sex drive left for husband and even when we are active it’s very painful.. Major swelling in face, neck, legs and feet, backaches, headaches. When I stand up I feel like I get a head rush or lightheaded and I flap my arms to stay up or I fall back into bed or chair. I sweat even in winter. I do have the buffalo hump, the stretch marks, the moon face, brain lesions and the discolored skin under breast, behind neck and arm pits.
Dec. 6th I had a carbuncle which had develped staff and mrsa removed from my armpit. My whole armpit had to be removed and a couple weeks later I developed an abcess and had to go back to surgery. It has been 5 months and I still can’t heal. Have been packing the wound every day and seeing the surgeon every 2 wks. Now I have a carbuncle on the other side and I’m facing more painful surgery after this side heals.
Today I recieved a call that the urine test I took for cushings came back with normal levels. Needless to say I sat down and sobbed. I am 46 yrs old and I have been sick for half my life. I have seen so may doctors, been through so many surgeries and painful testings. I have been told over and over that there is something wrong but the Doctors can’t find it. I thought cushings was the answer and that I could finally get treatment and get better. I look in the mirror and I don’t recogize this person I see….How will I start over again on this long search for answers? Where will I get the strength?
regular mass e-mailings to my close friends to keep them apprised of how I was doing so they could best offer support;
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