Well, I’m 29 now and still undiagnosed. If Cushing’s is what’s wrong with me, I have had it for quite a long time. I gained a lot of weight (60 lbs) the last 2 years of high school (17-18 years old). I lost 30 lbs at age 19 (I just didn’t eat much) and have since gained 70 lbs.
But, I really wonder if this all began when I was a child. However, I was tall, and Cushing’s is supposed stunt growth, so who knows. I was always the tallest kid (male or female) until about seventh grade, and ended up being 5’11”. When I started school I suddenly went from a fairly normal weight to having a giant, hanging belly with stretch marks. I remember by first grade (age 7) wondering where all this fat had come from. My parents blamed it on sitting in school all day, since I was an active child and ran around all day when I was younger, and we ate healthy meals. So, my parents put me in every sport possible: softball starting at age 6, basketball (2 teams) at age 9, soccer at about age 9, volleyball at age 12, golf at age 15. I would go on numerous diets, with the Scarsdale diet working well (high protein, very low calorie, but hard on my gallbladder), and I lost a lot with a 1500 calorie/day low-fat diet. In middle and high school, I was doing 2 hour sports practices (mostly cardio the entire time) every day, year round. I think my face has looked round since elementary school, and pictures from 2007 show a buffalo hump. I sweat more than everyone else (my Dad’s theory was that I developed more sweat glands because of all the sports).
My periods have always been irregular (starting at age 10), sometimes with 4-5 months in between, until I started birth control pills at 19 to regulate them. We figured it was because of stress or all the sports. I had fairly bad acne from about age 12-19, and since then usually still have a few zits, although now I have more body acne. My stretch marks are everywhere, along with spider veins, but the stretch marks are only pink and about 0.5-1 cm wide at their worst. Freshman year of college, I developed a cyst at the base of my tailbone the got horribly infected (I could barely walk) and it had to be surgically removed, leaving a big hole where my tissue had to grow to fill it (my surgeon told me it would take 6 weeks to heal and couldn’t understand why it took 6 months instead). I had many ear infections as a child (pink amoxicillin is yummy), and since age 20 get several sinus, ear or throat infections each year, requiring antibiotics.
Starting in middle school, I would get horrible acid reflux that would keep me up all night (in the days before all the drugs for it, so I really can’t stand Tums anymore). It went away for awhile, and then I started getting bad abdominal pain Sophomore year of college, like cramps unrelated to periods, and skipped a lot of classes because of pain and fatigue. At that point, I thought I either had mono or was severely depressed, because I was just so tired and wanted to sleep all the time. The pain went away after 6 months, but then I developed severe stabbing pain (age 24) in first my lower and then middle and upper abdomen, first diagnosed as IBS and finally after 3 years as a collapsed gallbladder. By the time it was removed, I had recurrent mono, a sinus/throat infection that required 3 rounds of antibiotics, was very fatigued and could barely walk. I still have some abdominal pain, maybe from post-gallbladder surgery syndrome or acid reflux.
I have always gotten stiff, sore muscles, which I attributed to the sports, but now I get even more stiff muscles. I also started getting joint pain in the last few years, it continues to get worse. Even in third grade the teacher noticed my extremely tense shoulders. In the last several years I have also started to become impatient, irritable, moody, and have anxiety and a quick temper (I was extremely even-tempered and calm until after college). I am also getting fuzzier mentally, with a bad memory, lack of concentration, and easily distracted, and often I just feel like I am loosing my ability to think and becoming stupid. Sorry to be so long, there are many more symptoms but you get the idea.
I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.
I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.
My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.
Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.
Update: May, 2007
It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.
For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.
Hello, my name is Rachel, and I am 31, will be 32 in 2 weeks.
I have been suffering from this medical condition, which I believe to be Cushing’s Syndrome, Adrenal Fatigue, or Pheochromocytoma, or maybe a mixture of all 3. I have had this for around 16 years, maybe longer, as I have had the classic “buffalo hump” on the back of my neck since I was 9 years old and have always had trouble with my weight. I have been on many diets since mid-childhood.
When I was around 13, I discovered a weight loss supplement, which I diligently took and lost 20 pounds over a 2-year period. I felt the best I have ever felt my entire life. I eventually had to stop taking it, though, due to not being allowed to bring any meds or supplements to my high school. I was not totally thin, but I looked pretty good. But during that first year of high school, my insomnia returned, and the rest of my symptoms started to emerge.
Autumn 1999 (when I was 14): I started getting daily headaches. Sometimes, they were minor, where I could ignore them, and other times they were so debilitating that I had to miss school. Because I wasn’t allowed to bring medication to school, I had to take Ibuprofen every morning as a preventative.
Autumn 2000: I suddenly gained 20 pounds in one month without changing anything in my diet. The fat was especially much around my face, neck, and torso.
Spring 2001: I developed fatigue, loss of concentration or “spacey-ness”, and being easily physically and mentally drained. I lost contact with many of my neighborhood friends, since I avoided lengthy times spent with them, and sometimes wouldn’t be when them at all because of not having enough energy.
Autumn 2001: Thinking I had hypothyroidism, I had my first doctor’s appointment over these symptoms, especially of the weight gain that was getting worse. Nothing showed up in tests, and the doctor wanted to put me on a 900 calorie diet. I never went back.
Summer 2002: My menstrual cycles became irregular, skipping sometimes 2 or 3 months at a time. Finally, they stopped altogether. I also gained another 20 pounds that upcoming school semester (16 weeks).
Summer 2003: I went to another doctor. She put me on birth control pills to get my menstrual cycles back. It helped a little, but they were very light with severe cramping. I gained an additional 20 pounds from the birth control pills and did not feel good. Once I got off of them, my menstruation stopped again, and I never lost those 20 pounds.
Autumn 2003: I went to another doctor from the University of Chicago. He tested various hormones and found that my androgen levels (mainly testosterone) were so high that it was off the charts. He thought that I might have Polycystic Ovarian Syndrome, so he entered me in several studies he was conducting for people with PCOS. I was given several test medications and had more tests done testing insulin resistance, glucose tolerance, and other things. Nothing came up positive. During that time, I also had an ultrasound done on my ovaries to check for cysts. Nothing showed up. After other tests were done, he concluded that I did not have PCOS, and that I might actually have Cushing’s Syndrome. I couldn’t go back to him, though, as his regular appointments without the studies were really costly. This whole time of the studies lasted till summer of 2004.
I also gained an additional 30 pounds during this time.
>My symptoms of fatigue and loss of concentration continued to worsen, so I had to become a part time student to avoid exhaustion with classes. I felt my worst usually starting around 1 or 2pm, and lasting till around 5pm.
Summer 2005: Diarrhea started abruptly and has been continuing ever since. A year later, I had discovered that caffeine could cause it, so I got off of all caffeine, which alleviated it for a few months. However, it returned shortly after, blossoming into 3 different kinds and becoming worse and more frequent over the years. I used to have it only at night, but now, I have it in the morning as well, and some at night, and sometimes some in the afternoon. I can have even 5 or more bouts of it a day, which makes it difficult for me in any public place. It slows me down in the mornings (as I sometimes have to spend an hour in the restroom) and often makes me late for things.
2006-2010: I have gone to many doctors over this time, each one testing my cortisol, TSH, T3 and T4, testosterone, DHEA, progesterone, and insulin levels, and each one coming up with nothing abnormal except high testosterone.
Spring 2009: I developed a candida skin infection that has been reoccurring since then. Antifungals do not take it away, only antibiotic ointments. However, even the antibiotic ointments do not take it completely away, as it keeps reoccurring and showing discoloration in spots where it had been previously.
Spring 2010: Episodes of light-headedness, shortness of breath, and rapid heart rate started appearing, ranging anywhere from 5 minutes to an hour in duration. They would come completely at random, sometimes 3 or more times a week, and sometimes not for several months.
2011: I developed slow motility, where it takes hours for my meals to digest. This made it hard for me to get to bed at a normal bedtime like 10pm, since I couldn’t lie down without getting horribly nauseous. This also affected my diarrhea, making it where I have to push to make it come out, since my intestines do not contract much to squeeze it out or they contract very slowly.
Summer and Autumn 2011: I went to 2 doctors in New York who also tested my cortisol levels and catecholamine levels to test for pheocromocytoma, which all came out normal. I also had an MRI done on my brain to check for growths on my pituitary gland. Nothing showed up with that, either. I also went to Mayo Clinic in Rochester, MN. My results in those tests also were all normal, and no diagnosis was made.
Spring 2012: My menstruation returned to regular monthly cycles.
Winter/Spring 2013: I suddenly started to become sensitive to cold, so winter became almost unbearable for me. This cold sensitivity has been increasing every year thereafter. Even temperatures in the 60-degree Fahrenheit range make me feel chilled and forced me to dress in double and triple layers of clothing.
Also, around this time, my fatigue reached a new level of severity, making my “dead” time duration between 12pm-6pm.
Spring 2014: My menstrual cycles suddenly changed again, where I had constant menstruation for over 3 months.
2015: My fatigue, again, worsened, making me so tired that I could fall asleep throughout the afternoon and most of the evening. This extreme tiredness would come especially shortly after I would eat a meal, particularly in the midday. This made studying for my classes very difficult and time consuming, since I was so slow.
I also started to notice I could feel a small lump on my upper left side, just below my ribcage. This lump started out the size of a golf ball and has increased to the size of a baseball. It makes me feel nauseous if it’s pressed on with little pressure and hurts when it’s pressed on hard.
My menstrual cycles became irregular again and have stayed that way ever since.
Spring 2016: After getting nowhere with endocrinologists, I went to see a gastroenterologist because of my diarrhea and lump. A CAT scan was done of my abdominal area showing nothing abnormal. In fact, the space where the lump should be in the pictures just shows empty blackness, no organs or growths whatsoever.
Over the course of these years, I have done a lot of my own research and have noticed that my symptoms all match 3 possible conditions: Cushing’s Syndrome, Adrenal Fatigue, and Pheocromocytoma. I am wondering if all these three conditions can coexist in the same body. I know that Cushing’s results from a growth on either the pituitary gland or the adrenal cortex of the adrenal gland, making the adrenal gland produce too much cortisol.
I also know that pheocromocytoma results from a growth on the medulla of the adrenal gland, producing high levels of catecholamines, which, for some reason, does not always show up in a blood test. And I know that adrenal fatigue results when the adrenal glands become exhausted from constantly producing high levels of cortisol during stress that lasts over a long period of time, so they don’t produce enough. So could it be that I have a growth on one of my adrenal glands that extends from the adrenal cortex into the adrenal medulla, causing the symptoms of Cushing’s and pheocromocytoma, while my other adrenal gland has adrenal fatigue? That would make sense why nothing shows up on the tests, because one adrenal gland is producing too much cortisol, and the other is not producing enough. So the two would cancel each other out, yet I could still experience symptoms.
I have gone to 12 doctors over these 16 years, and not a one has ever come up with a diagnosis or even cared about investigating the cause. They resist doing further testing and evaluating, because nothing shows up in the initial blood and urine tests. They don’t even believe me and think that it must be depression or that I am just making it all up. I have been criticized, rebuked, and laughed at by them. I even had a doctor chuckle as he told me, “You better get your periods back or you could get cancer of the uterus”. I have run out of doctors and have basically given up hope.
So where I am right now, spring 2017: My symptoms have gotten so bad that I am almost debilitated. Every day, I always wake up feeling just as tired as I did the night before. No matter how much sleep I get, I do not feel rejuvenated whatsoever. This makes it impossible for me to get up before noon, so often times, I am just eating breakfast/lunch around 3 or 4 o’clock in the afternoon. I have no energy all day long, and the fatigue makes me unable to do much of anything during the times I am awake. Most of the time, I feel like I am moving in slow motion, because time seems to pass by so quickly. I have to take frequent breaks from mental or physical tasks just to regain some strength and energy. I try to avoid social events, as I don’t have the energy to be with people and get easily stressed and drained. So I am alone much of the time. I can only take one class per semester in college now, as I don’t have enough energy to study.
I have acquired muscle weakness in my arms, hands and legs, that makes it incredibly difficult, and sometimes painful, to go up and down stairs, along with doing the process of going from sitting to standing or vise-versa. I appear as “lazy” since I can’t even get up from my chair to get something that is just a few feet away from me. The muscle weakness in my arms and hands makes it difficult to even do handwriting.
My memory if often foggy, also making studying difficult, as I can’t remember what I am reading. Many times, if a friend asks me what I have done during the last few days, I can’t remember. I can experience a fun event, and I still will forget and have to force myself to think about what it was. I feel like in a fog all day.
Almost every day, I will wake up with a headache, or I will get one over the course of the day. I have to take painkillers, such as Alleve, everyday just to keep my headaches under control. And sometimes, my headaches are so bad that they debilitate me. With those kinds of headaches, taking up to 12 Alleve in one day will not take them away.
Painful diarrhea keeps me in the restroom sometimes up to an hour or longer with each bout. I have to eat my evening meal earlier and earlier, so I don’t have to sit up late waiting for it to digest. I even have to keep from lying down for over an hour after drinking just water.
My immune system is also impaired, so I can get sick easily and have reoccurring candida infections. Colds and the flu hit me hard, often debilitating me for weeks. I take vitamin D3 to enhance my immune system to not get sick as often, since I have to ride the train and bus going to and from school. I have also acquired more allergies over these years. My nose has gotten really sensitive to perfumes and fragrances. I never used to be allergic to animals, but now, I can’t even go into a house that has pets without getting a bad sore throat and runny nose for 3 days after. And in general, I have noticed my lungs and nasal passages are producing more mucous, so I have to keep coughing and blowing my nose frequently, or I get a sore throat.
My menstrual cycles are very light and almost non-existent. I haven’t had one since January, and it’s now the beginning of April.
I am now 100 pounds overweight and can’t lose it, even with the same weight loss supplement I took before my first year of high school. The majority of the fat is around my face, neck, and torso, with some now accumulating on my upper arms and upper legs and pale purple stretch marks on my belly and upper arms. I have the typical fat distribution and appearance of Cushing’s Syndrome.
I still get the episodes where I experience a rapid heart rate, light-headedness, and shortness of breath. During those times, I have to breathe harder and just stop whatever I am doing. I have even almost felt like passing out at times.
I will be graduating in 4 weeks and am very afraid, as I don’t know how I will handle the stress and demands of a full time job, especially if I have to interact with people. I have very few friends, and half of my own family doesn’t believe me when I talk about my condition. I feel ugly and boring and have become very depressed. Is there ANYONE IN THE WORLD who will help me??? I hope someone (like a doctor perhaps) will read this bio of mine, and have compassion in their heart and be eager to help me.
I will never forget the day my hair loss went from “God, don’t I leave a lot of hair around the apartment” to “F***!!!! ”. I’d always considered my hair as one of my best features, it was long, wavy, strong, shiny and I loved it! When I started to see handfuls coming out in the shower it was terrifying. I was like a chemotherapy patient, it was unstoppable and devastating. I saw up to three GPs (Family doctors) who all only seemed interested in the level of stress in my life. Not one of them really took me seriously, I did a couple of blood tests, out of my own persistence that something was wrong, but nothing jumped out of these results to my doctors. I kept being told that my hair was falling out because I was stressed but I was stressed because my hair was falling out!
To be fair, this was a particularly stressful time in my life. I had just finished a year working abroad, in Portugal, which I’d found very lonely and isolating. I’d just returned home to Cork but things didn’t pan out the way I had hoped they would on my return. I was living on my own and trying to reacclimatise to something which wasn’t the same. Around the week leading up to the extreme hair loss I’d found myself in a particularly stressful situation. After about two weeks the hair loss settled down from terrifying to worrying. Since no one seemed as bothered by it as I was, I let it take a back burner. The doctor told me it was normal, the hairdresser told me it was common, I fell into accepting that there wasn’t a problem.
Flash forward five months and I’m sitting in my bosses’ office for a meeting. I look down at my arm, both my arms are covered in purple spots. It’s not itchy. It looks like a rash. I run a glass over it. The spots don’t disappear. I let out a loud exhale “phew it’s not meningitis. I’m fine”. I go to carry on with the meeting. My boss is having absolutely none of it. She knows that whatever is on my arm is weird. So she bundles me into a taxi and sends me off to an urgent care clinic. Since I was working as a chemist at the time for a pharmaceutical company, the obvious questions were “were you in contact with any chemicals?”, “are you allergic to anything you’re working with?”. I knew I hadn’t been exposed to anything so I decided to tell the nurse about my hair loss. I can’t thank this woman enough for the next question she asked me. This was a moment, although I didn’t know it at the time, that went onto change my life. She asked me “has the shape of your face changed?” To this I went ABSOLUTELY!
I’d put on weight in the previous year. It had started when I was living in Portugal. I’d put it down to a diet of beer and white bread. I hadn’t known, but any friends who’d come to visit me had thought that I’d put on a very noticeable amount of weight in a very short time. But this hadn’t made sense to me. I was working out at least 5 days a week and even up to 7 days a week. I was lifting weights and getting weaker not stronger. My diet was excellent (except for the booze and cigarettes) but my face and middle just kept ballooning while my arms and legs were turning into sticks. My clothes weren’t fitting. I was ashamed of my face and belly. I wouldn’t let myself be photographed. I was disgusted by my own body.
So, this nurse spotted something which no one had spotted before. She believed me, she knew that something was wrong and she (along with my wonderful boss) started me along the road to diagnosis and recovery.
Next comes a tremendous mistake from me. My attitude of “era it will be grand” nearly ruined my life and landed me ill in a very serious way. If I’d done what I was supposed to do at this point my disease would have been diagnosed and treated before it started to run away, with me dragged along behind it. I know why I didn’t pursue diagnosis. I was lazy about doing the testing, the hair loss had calmed down, I still just thought I was fat and I didn’t realise how sick I was because I had so many symptoms which came on so gradually that they just became normal to me.
I had my first appointment with an endocrinologist in April 2015. Turns out she knew from one look at me what was wrong. She recommended a 24 hour urine test but I had to be at least 6 weeks off of oral contraceptives for the test. I went off the contraceptives but by the time the 6 weeks had passed I just didn’t bother. I didn’t want to carry around a pee bottle for the day and besides the hair loss had settled down and I wasn’t sick was I?
How did I not realise I was sick?
I’d almost gone bald
I was constantly covered in bruises for no reason which didn’t heal
I never got to the bottom of my strange rash
I was swimming in a constant brain fog
I couldn’t sleep at night but I was tired all day
I put all of my symptoms down to sessioning too hard, being hungover all the time and injuring myself when I was drunk.
That was until I woke up one morning at my friend’s house, admittedly after a night of drinking, without the use of my arms, legs or hands. I woke up really early in the bed with stiffness in my limbs. When I got out of bed my legs were no good to me. I dragged myself to the bathroom on my hands and knees and sat in the shower to wash myself. I went down the stairs on my bum, got into my car and tried to drive home to my mam’s house. It took me about an hour to do a 10 minute drive. I couldn’t get out of second gear because I couldn’t press the clutch, which was just as well because my right leg was no good for using the brakes. Once I got home, naturally I was a bit concerned but I’d loosened out after a bit of movement and strangely wasn’t all that bothered by my period of paralysis!
Once I walked in the back door of my house, with my mother behind me she spotted one of the oddest things! It was like someone had thrown a cup of coffee at the back of my head and it had dried on the back of my neck. At this stage my hair was so thin that the only way I wore it was in a bun at the back of my head. This strange staining was there for all the world to see! I’d no idea how long it had been there given it’s not a part of my body I spend much time looking at. Turns out it had been there about a week and I could even see it growing and spreading up into my hair line and around the front of my face.
Mam wanted me rushed to the emergency unit. I wasn’t so keen on that, so we compromised. It being a Saturday we went to the on call doctor. Now starts the saga of doctors prescribing me steroids, steroids and more steroids. Little did I know that my problem was having too much steroids. I hadn’t heard mention of the term “Cushings Syndrome”. Nobody had brought this up. I took the steroids I was prescribed. I went downhill. I wasn’t experiencing the paralysis but I was having horrendous joint pain. I would watch as my hands, elbows knees and ankles swelled to size of large oranges. I couldn’t use a pen with my swollen fingers. Stairs were a struggle with my swollen knees. I hobbled around like an old woman. I didn’t understand what was going on with my body. I was panicking. I went to my GP in Cork, she prescribed a higher dose of steroids. It was only worse I got. She prescribed higher doses of steroids again. I felt this doctor wasn’t helping me, she wasn’t listening to my concerns and her only idea was to keep upping my dose of corticosteroids. What a disaster!
Luckily, my aunt is a docotor in the major hospital in Cork. She got wind of my problems, pulled some strings and had me admitted to the acute care clinic in her hospital for the following day. This was the first of my “holidays to CUH” as I started to call them. Here I saw what I can only call a plethora of doctors. Consultants that take months to years to get appointments with were calling to check on me willy nilly. I saw emergency consultants, rheumatologists, dermatologists, radiologists and finally the endocrinologist. We were all working to the assumption that I had some strange sort of viral arthritis which was causing my joint pain and swelling.
face
It was here in hospital that someone got to the bottom of the strange coffee stain on the back of my neck. It was merely a fungal infection (tick off the symptom of persistent infections).
After having received a very stern talking to from the endrochronolgist I proceeded to do a battery of tests including 24 hour and 48 hour urine samples, dexamethasone 24 hour and 48 hour, several trips and “holidays to CUH” all culminating in a MRI to confirm that I had an adrenal tumour producing far and above the natural and required levels of cortisol. This was the answer to everything.
After my diagnosis I started reading up on the symptoms of Cushing’s Syndrome. I realised that I had every single symptom on the list. Things that I hadn’t even realised were wrong with me until I gave myself permission to be ill.
I had the stretch marks on my arms, sides and legs. I’d though these were from my weight gain but who gets stretch marks on their arms? Turns out my skin was so weak it was tearing.
The cognitive deficiencies. I am someone who had always prided themselves on their intelligence, ability to think on my feet, to understand things rather than learn them. I’d always been a high achiever. I’d noticed myself getting stupider. I would be looking at someone talking to me and I’d be trying to figure out what day of the week it was. I found holding a conversation extremely difficult and very stressful. I wasn’t able to engage with people.I wasn’t able to listen, concentrate or respond. My memory was non-existent. Trying to think was like trying to swim through a thick, gloopy soup. I had put this drop in mental ability down to the partying and finding out that maybe I wasn’t as capable as I thought I was in the working world.
Bio, Continued: The bruising. I was bruising my arm from putting my handbag on my shoulder. The purple dots were actually tiny bruises. My legs were constantly just purple. I couldn’t heal. I was doing so many blood tests that the skin on my arms was constantly purple and wouldn’t heal.
Lack of libido. What libido?!
Irregularities with my period. I wasn’t getting periods at all since I’d stopped using oral contraceptives. I knew I wasn’t pregnant, see the point above and thought that I was just skipping some periods.
Brittle bones. I was diagnosed with osteoporosis at 24.
Joint pain. I wasn’t able to bend my knees to get up or down stairs. My bedroom is three flights of stairs from the kitchen. More than once I ended up stranded in the kitchen, not able to get back upstairs to lie down on my bed and feel sorry for myself.
The swelling wasn’t confined to my joints. There were days my face was so swollen it was hard to see out my eyes as my cheeks inflated and rose to meet my brow bone.
Sleep. I’d turned into an insomniac who wandered the house late at night not awake enough to do something but still unable to sleep.
Body hair. I was managing to grow a beard despite going bald! I started to get my cheeks waxed thinking this was a normal cosmetic procedure that other girls just didn’t talk about.
Stress. The choice between two different types of cheese could cause me so much anguish as to leave me in tears.
Up until the point where I was diagnosed, I hadn’t allowed myself to be sick. After the diagnosis I never let myself feel sorry for myself. I just got on with it. Planned for surgery and that was it.
In October 2015 I underwent a full left adrenelectomy to remove a tumour from my adrenal gland.
After the surgery I’d a whole new condition to learn to deal with. My right adrenal had been suppressed while my tumour was active. This left me with no natural cortisol in my body. A 180 deg turnaround from being pumped up on steroids 24 hours a day. I was on replacement steroids but my body was readjusting. I slept most of every day. I couldn’t pick up a carton of milk. If I didn’t take my medication I was in serious trouble.
I was back at work the week before Christmas. This was much too big a leap! I’d been frustrated by the speed of my recovery. I recovered from surgery quickly but the recovery from Cushing’s was slower. I’d expected everything to just go back to normal after the surgery and hadn’t anticipated the gradual decline in symptoms. I ended up getting very sick with a virus and really thought my family would have me admitted to hospital. There are two days that all I can remember is lying on the couch sweating. I lost 8 lbs in a day! I’d pushed myself too far.
And yet I still didn’t learn! I’m not someone that likes to be inactive. I also just wanted life to go back to normal. I returned to work again in January on half days and gradually built myself up to working full days.
Slowly but surely, I was taking less and less medication. I was able to stay awake a little bit longer every day. My mind was coming back to me. I was losing the bright red colour from my face. One day I woke up, looked in the mirror and suddenly had cheek bones again. I looked like my old self. By January I’d gone from a dress size 14 to a 6 with hardly any weight loss. It was just like someone had stuck a pin in me and I was deflating back down to a regular size. My hair was growing back but still had horrible wispy ends so I chopped all the sickness out of my hair. By April I wasn’t taking any steroids. I’d again pushed myself to the limit and instead of tapering slowly had gone down in major jumps. Weeks where I was doing a major jump involved lots and lots of tears. And then some more tears.
By June I noticed that I hadn’t had a day where my joints were sore since I couldn’t remember when.
Things like falling down the stairs because my legs couldn’t support me won’t be forgotten. Standing at the top of the stairs and knowing I can’t get down. My hands turning into claws. Or accidentally going into steroid withdrawals a few days post surgery (I was the crazy patient running up and down the hospital corridor screaming and crying in the middle of the night). These won’t be forgotten but they will fade in importance. The things that won’t are my little brother coaching me through all the tubes I woke up with after surgery, my friends bringing me bottles of diet coke and fancy hummus in hospital, the friend who came to see me every day in hospital, the one who picked me up and took me home, my mam who told me I was brave and that I’d gone through a lot, and the boy who listened to me cry when the pain still hadn’t gone away.
As of today I have been declared fully recovered bar one more hurdle. My repeat bone density scan. In two weeks’ time I have to repeat this to see if I still have osteoporosis. Whatever about having a tumour at 23, being diagnosed with osteoporosis at 24 just isn’t on! I’ve been drinking plenty of milk and tons of cheese though so fingers crossed.
About 2 and a half to 3 yrs ago, i was being treated for a condition called Reflex Sympathetic distrophy.
While they were treating me, they were injecting me with steriods. And from that symptoms started showing up that had nothing to do with my rsd condition like; the red moon face, the obesity, the irregular periods, and the striae marks.
Due to the VA ruining all the tests they did, about 6 months later i was rushed to the hospital near death, when the doctors at the hospital did the tests they discovered that i had cushing’s syndrome and that i was lucky to be alive.
I am now cured of cushing’s however i still the striae marks all over my body and am still somewhat fat. I am afraid i could get sick again and am very self concious about my body.
about 4 years ago her periods stopped…looking for a possible cause blood work was taken and she had significant rise in prolactin levels.
An MRI was taken and a prolactinoma of 2mm was found on her pituritary gland.
A few months later she fell pregnant and had a beautiful healthy baby boy…..After the pregnancy prolactin levels were still high but an MRI showed that the tumor had gone ???
Since then (about 15 months) my daughter has gained about 30 kilos, tired all the time hump on her back (neck) a much more rounded face, and her periods have returned but they are never on time. She has also been treated for what they believe was postpartum depression.
Does anyone know if a tumor can just disappear? And what test would you ask for now?
After reading this web site I cant believve that her endo hasnt checked her for cushings.
Thankyou Dee
(MaryO note: Although Dee asks several questions, she didn’t give permission for a link to her email address to be added to her bio)
Hmmm, where to start? “Hello” to one & all, & how I wish I had discovered this friendly & helpful site 3 years ago. Ah well, better late, than never, eh?
Anyway, back to me : in a nutshell – 47 year old single female, 87kg, 5’4″, Post Cushings Syndrome through Adrenal tumour & subsequent unilateral Adrenalectomy I’m now Hydrocortisone (HC) dependent , Hypothyroid (just switched to NDT & T3 combo from synthetic T4 & T3), Pituitary microadenoma.
Now for the details…..are you siting comfortably? I’ll try to keep to the plot ! Suffered with bouts of fatigue & depression since my early 20’s. Spells on different types of anti-depressants which didn’t help me much.
Skip to 2004,weight going up despite no change in eating/excercise habits (those intermittent years were filled with seeming to pick up every bug & cold that was going around & weirdly taking longer than others to get over illness) prescribed Zoladex implant to relieve very painful & intolerably heavy periods, along with severe mood swings.
Tiredness is now just an unwelcome fact of life for me, weight still increasing gradually. Developed Psoriasis.
June 2012 diagnosed Hypothyroid after completely breaking down in GP’s surgery & being referred to Endocrinologist. Signed off work for foreseeable future. Prescribed Levothyroxine, Zolpidem & Ramipril, weight goes up more. More investigations pinpointed extremely high cortisol levels, (I have all the physical signs of Cushings at this point – but Endo has not even mentioned the condition to me!)
Meanwhile referred to Neurologist for my now weekly migraines, prescribed Propranolol & he & Endo agree on cranial MRI scan to help both of their cases with me. Full body scan also booked. In the same week I learnt that I had both a tumour on my right Adrenal & also a Pituitary micro-adenoma. More tests which determine that it is the Adrenal tumour causing my Cushings (oh, & I had to ask Endo if what I had was Cushings – as he had still not even uttered it’s name to me! )
Unilateral Adrenalectomy performed Aug 2013 (had to fly 200 miles to have it done – alone – haven’t told my family who live 300 miles away about either tumour).
Post op weaned down from 40 mg to 17.5mg HC per day, over few months. Feb 2014 went into adrenal crisis & rushed to hospital – remaining adrenal obviously not working yet.
Since then, have had 9am bloods every 2 months & follows up with Endo & still no sign of life in Adrenal. Have lost only about 4kg max since the op – still obese & unable to loose weight & still have the classic Cushings apple shape.
In Aug 2015 returned to work full time, in a downgraded role, & have to up dose to 20mg HC just to get me through working day. Begged Endo for T3 to try alongside the Levo & was granted in Nov 2015 . Slight improvement at first, but short lived. Also i asked to come off Zoladex implant, to see If that side of things are any better yet. No period yet. Shattered & aching, have no social life or energy & spend weekends resting in lieu of working week & in prep for the next one, waning to be alone.
Grasping at straws to feel better so am now (since mid April 2016) self medicating on NDT & T3 as Endo does not support prescribing it. Endo does not want to see me now until Sept 2016 , when I am due an MRI again to check on the Pituitary tumour size/growth & have next 9am bloods.
That’s about it medically………quite enough for me, thanks ! P.s I have bad brain fog (& also Sinusitis at the mo) so may well have missed something & will probably remember it in about 3 days or so !!
18 yr old daughter. Diagnosed with alopecia areata as a toddler. Continued through childhood until eventually lost most hair on body. Some re growth at puberty, but minimal. (Checked for PCOS age 15 ultra sound looked fine but showed mild fatty liver, she had started to put on excess weight)
Age 15. Late menses, then irratic, sometimes every 4 or 5 months, then heavy or light. Height growth stopped around 16. (Few inches shorter than all female relatives. ) Weight again, headaches, back pains, hump, chest pain episodes (3 different times), (ruled out as stress in the ER even though all episodes happened while she was having fun) light headed upon awaking in am, then felt nausea, sometimes vomits until bile. (many times led to testing of gall bladder some disfunction), (cyclical) constant throat and tonsil infections led to tonsil removal, still many throat and urinary infections, excellent student but deals with extreme fatigue, occasional brain fog, anxiety at times, moodiness, dry eye, thirsty a lot, some course black hair growth occasionally, acne, red face, moon face, problems in heat, a few pigment discoloration in spots, some purple stretch marks, weight gain heavier in midsection, repeatedly tries to eat healthy and can’t drop wieght unless she is ill and not eating at all.
Seems to be cavity prone even though she is diligent and obsessive about clean teeth. Wears corrective lenses, has vision blurriness at times, can’t wear contacts due to dry eye and discomfort.
Finally ended up at endo after many other doctors. Have been waiting over 3 weeks for results of dex suppression text. Still no news from doctor, even though I call. Frustrated, have known things were wrong outside of the norm, separate of the auto immune disease Alopecia Areata. Yet no one can figure out a connection or what.
My Daughter hasn’t felt good in 4 years. I’m sick and tired of no one trying to find cause. If it is Cushing’s, why the lack of urgency to help us figure out. After chest pains episodes etc, I’m scared of damage to her body. Not to mention possible infertility issues down the road. I’m tired of being treated as if its nothing All I want is my kid to be the happy go lucky, full of energy, brave, intelligent, confident (even though she has been bald most of her life), like she was her freshman year of high school.
Hello Cushing’s world! My names is Chelsea. I’m 23, female and waiting for a possible Cushing’s diagnosis. I’m trying to see if anyone has a similar story to mine? I’ve had a hard time finding people in my age bracket with similar symptoms or test results.
Up until I was 21, I was 110 pounds soaking wet. I’m 5’3 and have always been extremely active. I was on the USTA junior tennis circuit for 15 years and then started coaching when I was in college. I also was always on a high protein, low card diet for the majority of my life.
I also went on birth control at age 13 and stayed on it until I was 20. The first 6 months off of birth control, I never had a period but I assumed it was normal after being on the pill for so long so I didn’t worry about it.
Then, about 3 and half years ago, roughly six months after I turned 20, I gained 45 pounds in a matter of 5 months. Completely unexplained when, at the time I was coaching a JV tennis team and in kickboxing class twice a week. Obviously I was utterly shocked and disappointed. I started trying to lose the weight. I cut down from 1500 calories a day to 1200 and amped up my cardio routine.
My period had come back, but I started noticing that it would always come about 8-10 days after I expected it to come. Again, I assumed my body was just getting back into the swing of things after going off the pill.
During all of this, it was time for my yearly physical with my GP. I went to the appointment, had weight and height taken, and was ready to discuss with him the weight problem I got in what seemed like overnight. After walking him through my diet and exercise routine and mentioning my period irregularity, he simply insinuated that I was probable a closet over eater and said “Just eat more celery”.
Still to this day I can not look at celery without my blood boiling. He also said that once I lose the weight, my periods will get normal. Ok. I’m 20 at the time and a little naïve in my thinking that, “he’s the doctor, he must be right”. So I pressed on in my quest to lose the weight. To no avail. Instead, every Wednesday when I stepped on the scale, it showed that I had gained a pound of two.
At this point I’m weighing in at 158. Not grossly overweight but also not a healthy BMI. I also started noticing that my once long, strong jaw line was turning into mush and seriously thought I needed a chin implant. Then I noticed that I was starting to oddly resemble a linebacker. The fat on my back between my shoulders came out of no where. I have worn a scarf almost every day since to hide it. I also noticed that, while the sleeves in my shirts were fitting fine, my pants were not buttoning and I could no longer wear my mid-drift bearing tops without looking at myself and crying.
The depression began to set in. I had been diagnosed with bipolar disorder at 18 due to boughts of depression followed by highly elevated mood, never quite reaching mania. Also, I was anxious 24/7. I never took antidepressants. Only a mild mood stabilizer and still do to this day. It is the only medication I’m on.
Back to age 20, the next thing I noticed was that I could no longer bear going to school, coaching tennis, and working part time. It was everything I could do to just get out of bed. My back ached, my knees ached, and I was not even recognizing myself in the mirror. As my mother puts it, I started looking like I was stung my a thousand bees rather than putting on weight.
It was about this time, age 21 that I had skin problems. So I went to the dermatologist who diagnosed me with mild eczema on my elbows and tops of my hands. But it hurt. I couldn’t and still can’t stand for my hands to come in contact with anything hotter than warm bath water.
It then came time for my annual gyno appointment. Again, I rehashed everything I had been feeling and noticing and again, I was told it was just “life stress” and to “learn to relax and work hard to lose the weight”. So again, I left feeling like it was all in my head. The next few months is when I started noticing that I was not functioning like I used to. The comment I often made to my mom was ” I just feel like I’m on autopilot all day. Everything seems so hazy.” She began thinking I may have a thyroid problem.
SO I made another appointment with my GP and brought her with me. He adamantly insisted it was in my head and would not order blood work. Again, I left feeling like this was all my fault. A few months later, I accepted a job after graduation and moved to Boston. This is when I first noticed the disgusting black mustache that had taken up residence above my upper lip. I began having to shave it every day and decided well this must have something to do with my period problem, that was still coming farther and farther apart every couple of cycles. Again, more weight gain.
Finally, I hired a personal trainer and nutritionist. I met with the trainer twice a week and the nutritionist once a week. I kept up with this regime for about 11 months. I lost a grand total of…… four pounds. I was defeated to say the least.
During those 10 months I noticed that my vision was so blurry. Every day all day, it was slightly fuzzy but there would be instances where it would get so bad, I could no longer read my phone. I had been diagnosed with refractive amblyopia when I was 5 ( a non-wandering lazy eye) but I had never had blurry vision before. I decided to find a GP in Boston and made an appointment.
I yet again, went through my whole list of symptoms that I had been gradually wracking up over the last two years and again, heard “you need to just try harder to get the weight off and then everything will go back to normal”. UGH. I thought by choosing a female doctor this time that I’d hear something at least a little more hopeful. But no.
A few months later, I took a job with a great company and relocated to Houston. It was this time last year and I had completely missed a period. 84 days with no period. I decided to get serious. I starting tracking my cycle and recording my weight. I met with another GP. Again, I heard, you need to lose the weight. I was done. I resolved that this must be how I was going to spend my life. Fat, achy, depressed, most probably infertile, and going through life in a haze. However, I kept tracking my periods just so I’d get an idea of when to expect them.
Then, in October of 2015, I accepted a dream promotion and relocated to Seattle. I had started having hot flashes in Houston but guessed that it had to just be that Texas heat. However, they continued in Seattle. I was still living life with the sense that maybe all people feel like me. Maybe all people have aches and pains and can’t muster up the energy to do tasks as simple and mundane as cleaning the coffee pot.
Then, I went home over Christmas where I experienced the three most awful hot flashes of my life. My whole body started tingling, I felt like I was being held up to a fire. I resolved then and there that when I got back to Seattle, I was making a gyno appointment and I was not going to leave that office until the doctor thoroughly listened to me and blood work was ordered. I had a “don’t take no for an answer attitude”.
Luckily, by God’s grace I presume, I didn’t need that attitude. My new gyno is now my hero. Immediately after I went through the last three years of my symptoms, he sent me for blood work. He was thinking PCOS or a thyroid problem. Maybe both. A week went by and I never heard from him. He had said he’d call in two days. Finally, after I called the office about 5 times, he called and said he was sorry to keep me in suspense but that he had never seen blood work like mine. He was expecting to see either my thyroid levels elevated or my testosterone/androgen elevate. Instead, those were all in normal range. What wasn’t in normal range was my moderately elevated Prolactin level and my “through the roof” DHEA level. He had consulted four other doctors who were all just as puzzled as he was and recommended he refer me to a medical endo.
In the meantime, I had made an appointment with a new GP. I went to that appointment two days after my gyno called with my test results. I didn’t mention that conversation with my new GP. I wanted to see what her opinion was when I presented her with my symptoms and test results. She too thought PCOS with symptoms but when she looked at my blood work said ” I have no idea but something is not right”. SCORE! I couldn’t have been happier.
After years of feeling crazy and lazy and defeated, I had validation that my body was working against me. She didn’t come out and say “I believe you have Cushing’s” but she did say “When you see the endo, please ask him about Cushing’s”. My guess is, she didn’t want to make that kind of diagnosis. I got my referral to endo and called to make the appointment, it’s for next week. And I found out my gyno had written “possible Cushing’s?” on my referral. So now I’m anxiously awaiting my endo consultation. His assistant called yesterday and asked why no one had order a pituitary MRI yet. I told her that these were the first two doctors out of 7 that I have seen in the past two years who ever even believed something was wrong. She decided we should do the consultation and go from there. Weird to say, but I really hope it is a cut and dry endocrine issue. Then I’d have a real answer. So now, I’m at 173 pounds, 5’3, (obese as I have been told by several non Seattle physicians), with stage 1 hypertension and a multitude of symptoms that I hope are all linked together.
If anyone has had a similar experience, please reach out. I know this is different for every patient but any kind of similarity will be welcomed while I anxiously await the endo appointment next week.
My name is Lauren. I am currently being tested for Cushing’s Disease. I’ve read that every patient is different, and from what I can see it is completely true.
I am not entirely sure how long ago my story started. I began seeing my family doctor in high school because I was having menstrual issues. At the time my Mom’s biggest concern was that I was having very irregular periods. She had also noticed that I had been growing hair on my face, under my chin and side burns. I was referred to two different specialists – an Endocrinologist and a Gynecologist to try and determine that root cause.
After multiple appointments with both specialists, the Endocrinologist said that I was on the edge of being Hypo(?) Thyrodism (it’s the one that makes you gain weight) and the Gynecologist said that I had PCOS (or PCOD – the name has recently changed, but I prefer to think of it as a Syndrome instead of a disease). I had a large amount of weight gain between grades 10-11, bumps (or cysts) all over my ovaries, facial hair growth and very irregular periods. I disagreed with the diagnosis.
Even at the age of 15 I felt that it was not the right diagnosis. I had friends with PCOS, and every one of them had insanely painful menstruation and small breasts. This may sound silly, but it was honestly the boobs that made me feel like the diagnosis was wrong. I may have small boobs for my family, but I still carry around size D (or DD depending on my weight) breasts. Either way, the voice of a 15 year old does not tend to carry far and I ended up being prescribed Glumetza (Metformin – used in Diabetes patients) and Yaz (Birth Control).
The Glumetza has always made me sick. I can’t eat my favourite foods with out feeling sick, if I can even get it in my mouth. The one thing I’ve always told my family is that it’s like being pregnant 24/7 with no bun in the oven. I’ve been on and off the medication for years now.
About 6 months ago I went in to see my family Nurse (I’ve stopped seeing my family doctor since, as the diagnosis is always “Lose weight”). I had been having chest pains while working out. Now although I say chest pains, it was more like severe pressure in my left shoulder. I would get dizzy and light headed while running with my sister, and on one occasion I threw up (Just bring it up to my sister, and she will start describing the cheesy spagetti coming flying out of my mouth and on to the yard of one our neighbours.. she still will not run that way).
At the point Erin (the amazing family nurse) also mentioned that my blood pressure had been high, not just recently, but for the last year. Furthermore I was hypertensive. I had heard this term before because for the last year my Mother had been going through her own set of genetic heart issues. My Mom had just been diagnosed with Coronary Artery Disease (genetic form of it) and Superventrical Tachycardia (SVT – PSVT specifically). My Mother was also Hypertensive. This was concerning to Erin, as it had already been determined that my Mom’s condition was genetically given to her.
After monitoring my blood pressure for 3 months, with no improvements I was referred to an Internalist who also specialized in Cardiology. He’s great, just for the record. It’s not very often I that I get to speak with a doctor who understands sarcastic humour. Dr. A-R immediately removed me from Mavik (Blood Pressure Pill) as it was actually doing more harm then good. The palpitations that I was having on those pills were beyond intense, and the worst I ever had. They were never long lasting, never lasting more than 20 seconds at absolute most, but I can definitely say that I do not envy my Mom. Dr. A-R diagnosed me with SVT after a 14 day heart monitor. He literally called me the following Monday after I handed the monitor in. He immediately changed my medication from Mavik to a Calcium Channel Blocker. I still have heart episodes but not nearly as many or as bad as when I was on Mavik.
At my 3 month check in last week he said that he was concerned, because he did not believe that the blood pressure and the SVT were actually connected. He believes that I also have Cushing’s Disease. I had some blood work done a few weeks back that showed a very high number for a stress hormone in my blood. Now I am new to this whole thing, and my memory is horrendous, so I honestly do not remember what that hormone is called. I laughed when he said it though, for two reasons. 1. When I was diagnosed with PCOS, I was told that my body didn’t make hormones, hence the thoroughly detested Glumetza. Apparently that’s a different hormone. 2. It’s a stress hormone? Seriously? I am stressed 24/7 between work, home and my constantly changing relationship with the love of my life. I asked him if that would affect the number. As all of you know, it didn’t. At 8am when I had my blood work done, it shouldn’t be that high. He asked that I do a 24 hour Urine test. I waited until this weekend to do it, and I can honestly say that I did not enjoy a single moment of that test.
My Symptoms:
> Weight Gain
> Facial hair
> Irregular Periods
> High Blood Pressure (Hypertension)
> Back Pain (Which I always assumed was from my curved spine – scoliosis)
> I have a little bump on my shoulders, but unless you’re looking for it, you won’t see it.
> High levels of stress hormone.. and waiting on results for Cortisol.
> I recently have been struggling with depression
> Anxiety & Irritability are a constant.
> Acne
I am currently waiting on my urine results.. and I have no idea what to expect. I do not even know how long it will take to get results.
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