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Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome. I am married with two children ages 10 and 4. My husband is an active duty Marine and I am a former Marine.
I’ve always been healthy up until now. I had pretty much a yawn worthy medical history and I wish I still did. I guess it started two years ago when I started having to use the bathroom frequently at night. I did go to the doctor and they just told me to quit drinking before bedtime. I chalked it up to having children and maybe just a weak bladder. I wasn’t thinking rare disease.
Then I noticed that I started to gain weight and my close weren’t fitting right at all. I chalked that up to sitting at my desk job all day and not getting enough exercise. I did go to the doctor to have my thyroid tested and it came back normal. So once again I am thinking it is me and I just need to exercise more.
My husband received orders to California and we moved here in July of 2012. By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress. Determined to get back in shape I start exercising everyday at 630 in the morning. Normally I am not a morning person by any means but since we moved here I find it hard to sleep. I worked out for three months following an exercise regiment but the weight stayed on. My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well. I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad. I had them test my thyroid again, it was normal.
Once again determined to beat the weight I started walking vigourously and watching my calorie intake. I noticed that I would have tingling in my toes at times and that my calves seemed weak. I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going. My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels. I knew something was wrong but I couldn’t put my finger on it.
I started to do my research on the internet and that is when I discovered Cushing’s. But I thought it is so rare I can’t have this. I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.
In March I went back to the doctor and told them to test my cortisol levels. My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California. By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.
The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done. The x-rays did not show anything so they sent me on my way with crutches. By the 4th day of vacay I stayed in bed resting because I really couldn’t walk. I got up to use the restroom and I had the crutches and fell backwards. I ended up fracturing my hip. I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.
They had a really hard time keeping my blood pressure under control during my hospital stay. While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23. Well upon our arrival back home I was referred to Orthopedics because of my hip.
Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo). I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.
Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland. I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.
Is there any good news out there? I really hope so, I just want to be healthy and enjoy life again!
In November 2009 my PCP diagnosed me with pituitary Cushing’s Disease. His diagnosis was confirmed by an endocrinologist at the University of Washington Medical Center in Seattle, WA in January 2010.
English: Concept of Gamma Knife Stereotactic Radiosurgery (Photo credit: Wikipedia)
In March 2010, I had my first pitutary surgery at UW Medical. My second surgery was in September 2010 at the same hospital. My third surgery was at Harborview Medical Center, also in Seattle in May of 2011. After my husband and I learned the third surgery had also failed I had gamma knife radiation on half my pituitary gland in November of 2011, also at Harborview.
After waiting what seemed like a very long year and a half we decided to have my adrenal glands removed by a surgeon from the Seattle Cancer Care Alliance in May 2012.
I am finally without Cushing’s Disease and looking forward to a “normal” life.
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?
I’m a 19 year old male student with Cushing’s syndrome. Basically had accelerated weight gain since late 2011, despite frequent exercise and heavy dieting.
Started to feel a lot more irritable and tired, lost strength at the gym, developed big unsightly purple stretch marks across my abdomen
Initially my doctor just told me that I was getting fat and should do more cardio/eat less. She even commented on how it showed quickly in my face (mild moon facies)
It was entirely reasonable for her to think this, but when the stretch marks didn’t fade as they normally would i did a google search and returned.
Urine test, blood ACTH and cortisol test, repeat urine test. Soon I was sent to an endocrinologist who confirmed Cushing’s syndrome.
I just had an MRI of my pituitary after the ACTH signs pointed to a pituitary source. The Endocrinologist said it appeared to have a 3mm lesion, but it was not 100% conclusive so I am to undergo petrosal sinus sampling for confirmation within the month. Hopefully that will confirm the adenoma with surgery ideally soon after that.
I’m happy to have got it reasonably early; most of my symptoms are still relatively mild, but it really does make you put other things on hold until you can fix it, which means i’m sort of stuck in a lull until its all fixed. I would appreciate any advice for things to do in the mean time to help me feel like i’m doing something positive rather than just waiting.
Location of the pituitary gland in the human brain (Photo credit: Wikipedia)
Cushing’s syndrome is a rare disease which affects 65 patients in one million inhabitants of the EU. Cushing’s syndrome is a state where the body is chronically exposed to a high concentration of cortisol.
The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully.
On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.
I suspect I may have cushing’s syndrome or disease but all I know for sure is I’m sick, I don’t know what’s wrong with me……..and I want to get better.
I just turned 25 in March but looking back i think i’ve been showing symptoms for the last 13 years.
At the age of 13 over the school holidays I gained a bunch of weight (14 kg in a month and a half) and since then my weight just keeps climbing up. I also became lethargic, depressed, unmmotivated, struggled with my concentration and continue to do so. The stretch marks followed the weight gain. I definitely have a really round face, which I guess could be moon face. My face gets really red and flushed. I have very little body hair but its quite strange that i have hair growth on the lower part of my fingers and toes. I have a significant amount of foot pain especially when I get up in the mornings. I have lower back pain too. I wouldn’t say my periods are highly irregular but they are often off from my usual 28 day cycle by about 5 to 14 days. This is becoming a more frequent occurrence. My skin is really thin, soft and doesn’t heal well. Small cuts and bruises take longer than usual to heal and almost always leave scars. I feel hungry and tired all the time.
The depression and fatigue is by far the most debilitating of all the symptoms I have suffered from. My grades in school and later on University have steadily dropped since the age of 13. I find it really hard to concentrate. It was only when I began failing in uni that my parents finally allowed me to see a doctor who was a psychiatrist in 2009.
I had an abnormal EEG showing evidence of seizures. The evidence was not sufficient enough to diagnose me with epilepsy but he called it seizure equivalent depressson. I was then put on heavy rounds of anti-depressants and anti-convulsants which kept on being adjusted. Different dosages and combinations would work for awhile then stop so that meant more combinations, stronger drugs and higher dosages. To cut a long story short I finally quit the meds in Dec 2011 and began to see a new psychiatrist in May 2012 who ordered blood tests, a thyroid test, sleep-deprived EEG and an MRI.
My blood sugar and cholestrol is normal but heading towards the high range which worries me but not suprising given that I’m obese. The EEG again showed slight evidence of seizures but when I was referred to a neurologist he said I show no evidence of seizures and that normal people have abnormal EEGs all the time(?????) This is despite a history of epilepsy on my Dad’s side of the family. What about non-convulsive seizures-could this explain the lack of poor concentration?
The MRI came out normal, only showed that I suffer from chronic sinusitis. But then again it wasn’t done by a specialist in the diagnosis of pituitary tumours and they most definitely were not looking for one so if there is a microadenoma, its flown under the radar. The blood tests showed I have a low white blood cell count (neutrophils and monocytes). My cortisol level was normal but then again it wasn’t a 24-hour cortisol test.
From my own research I found that chronic sinusitis could be linked to the depression but my Psychiatrist seemed to be unwilling to explore these leads any further and advised me to stop researching so much online. At the same time he put me a new round of anti-depressants and anti-convulsants which left me feeling weak, tired and drained. For the first two weeks I slept all day and could barely get out of bed. I quit these too in September 2012 and since them haven’t seen any doctors but symptoms remain and its a struggle to live with them every day.
I am still financially dependent on my parents who are tired of my constant “depression” which they feel is an attitude problem so I don’t even speak about it with them any more. They feel I should just try harder. I hope to graduate from Uni this year but due to my health problems I’m 3 years behind and my grades have suffered. I have health insurance which makes it very difficult to get referrals to specialists and they hardly covers pre-exisitng conditions. All treatment described above was paid for by my parents and not health insurance. They are retired now and don’t want to spend a ton of money they don’t necessarily have, looking for a phantom condition. I understand their point of view but I feel if I had a child I would do all I could to help them get better.
The more time that passes the more difficult it becomes and the more paralysed I feel. I have a part time internship at a law firm that is even becoming too much now. I can barely study. I’ve lost almost all my friends either because I isolate myself or am too tired and depressed to be there for them like a good friend should.
As of March 2013 I went to see a gynacologist about my irregular periods he ordered another thyroid test, prolactin test and a Pelvic scan so i’ll see how that goes….maybe its PCOS.
Anyway I have no one to talk to . I don’t know what to do next. I wonder if anyone else has been/is in a similar position.
I have a very good friend who appears to me to have many of the Cushing’s Syndrome/Disease symptoms.
Several years ago I persuaded her to have her doctor run a 24 hour test. This test came up negative, and she has refused to consider pursuing this possible diagnosis ever since.
Currently my friend is experiencing debilitating emotional symptoms in response to issues within her family. She is 59 years old with serious high blood pressure and severe sleeping problems.
I am worried that she will not live much longer unless she seeks medical help. I am seeking tips from people on this forum in an effort to get my friend the medical help I feel she needs.
Neurological conditions can affect the brain, spinal cord, nerves, and muscles, making daily life challenging for patients and families alike. Whether someone is dealing with Parkinson’s disease, epilepsy, stroke, tremors, or memory disorders, selecting the best neurologist in Pakistan is one of the most important decisions for proper diagnosis and long-term care. A qualified specialist […]
Welcome to Cushing's Help and Support. This site provides information, support, news, and education for people with Cushing's or other endocrine problems, their friends and families. Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of cortisol. Cushing's is a debilitating disease which causes the overproduction of […]
Adrenal crisis is a life-threatening medical emergency, associated with a high mortality unless it is appropriately recognized and early treatment is rendered. Despite it being a treatable condition for almost 70 years, failure of adequate preventive measures or delayed treatment has often led to unnecessary deaths.
(Video) Pituitary tumors start in the pituitary gland. They’re usually benign (not cancerous) and rarely spread to other parts of the body. Dr. Borghei-Razavi discusses pituitary tumors and treatments…
Older age, and lower baseline neutrophils and NLR, were associated with prolonged postoperative GC replacement. These findings suggest that routine hematologic markers may help predict delayed recovery and guide individualized tapering strategies.
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