May 14, 2026
MaryO
Undiagnosed
abscess, anger, Blood pressure, blurry vision, brain lesions, Buffalo hump, cholesterol, Conditions and Diseases, cushing's, cushing's syndrome, depression, fatty liver disease, hair loss, headache, Health, infections, memory, mood swings, moonface, Multiple sclerosis, pain, pre-eclampsia, pregnancy, sleeping problems, sports, Stretch marks, striae, surgery, sweat, swelling, Symptom, UFC, urine, weight
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?
May 8, 2026
MaryO
Chronic Fatigue, Diabetes, Fibromyalgia, Steroid-Induced
anxiety, cholesterol, Chronic fatigue syndrome, Conditions and Diseases, cushing, cushing's syndrome, depression, Diagnosis, epidural, Fibromyalgia, Health, hypertension, hypochondria, iatrogenic, IBS, steroids, triglyceride
I am a 55 yr. old female recently diagnosed with Cushing’s.
Previous diagnoses included: diabetes, HTN, asthma, Chronic Fatigue, Fibromyalgia, high triglyc/choles., IBS. Still in process of testing to determine cause. Had multiple steroid epidurals in past few years. Have had symptoms for over a year.
Doctors misdiagnosed Cushing’s as Chronic Fatigue, Fibromyalgia, anxiety, depression, hypochondria. So fed up with arrogant judgmental doctors.
Have a great endo now who diagnosed Cushings and doesn’t treat me like I’m nuts.
April 27, 2026
MaryO
Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments
aches, anxiety, blood clot, blurred vision, bruising, cholesterol, colon inflammation, concentration, congestive heart failure, cortisol, depression, diabetes, double vision, edema, gastric bypass surgery, hair loss, high blood pressure, myopathy, pain, physical therapy, pituitary, Sleep apnea, striae, weight
Hi, my name is Meriam from California, a 51 years old female. I was diagnosed with Cushing’s last August 2013.
I had all the typical symptoms (weight gain, edema, purple marks, bruising, aches all over the body, hair loss, depression, anxiety, uncontrolled diabetes, high blood pressure, high cholesterol, poor concentration, sleep apnea, etc.) I thought all of these problems was partly caused by my weight gain (230 lbs.). I underwent a gastric by-pass but still didn’t lose weight that much.
Eventually. my body seems to shut down and had been and out of the ER. I suffered congestive heart failure, blood clot, blurred/double vision, colon inflamation, body pains and aches, myopathy but the hardest part was, I lost my ability to walk.
It was a rough year for me; been hospitalized for almost a year. Finally, after 6 months of suffering, my Endocrinologist was able to diagnosed me of having Cushings.
My pituitary gland was removed and was given the necessary treatments. As my cortisol level went down, most of my symptoms disappeared except for bouts of body aches and depression.
I am currently doing physical therapy to be able to walk on my own again. I lost weight and on the way to recovery.
My greatest fear is for the Cushing’s to come back and I do not want to undergo the same ordeal again.
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April 25, 2026
MaryO
Adrenal, Hashimoto's, Other Diagnosis, Thyroid, Undiagnosed
24-hour urinary free cortisol, adrenal adenoma, Blood pressure, bruising, cardiologist, cholesterol, cortisol, Dr. Theodore Friedman, endocrinologist, fatigue, flank pain, flushing skin, food intolerance, glucose, Glucose Tolerance Test, groin, Hashimoto's, hip, kidney stones, low grade fever, low oxygen, muscle weakness, nephrologist, osteopenia, pain, pallor, pre-diabetes, Primary Care, stomach, surgery, tachycardia, thyroid, tired, tremor, urologist
Hi, My name is Diana. I have been sick for over two years now.
I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.
I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.
I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.
Here are my symptoms:
Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)
Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test
Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery
Extreme fatigue/ as tired when I get up as when I go to bed.
Muscle weakness with any exertion, especially going up stairs and most days just walking across the room
Pallor
low grade fever on and off
blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently
Rising cholesterol over the last couple of years with no change in diet
Right flank pain
Low back pain
Burning pain in upper buttocks and upper back thighs
Stomach and groin pain
Extreme hip pain
Shaky and fine tremor in hands and sometimes my head also shakes
Mildly elevated cortisol (24hr urine cortisol test)
Have been diagnosed with osteopenia in the past
Hashimoto’s
I break out with clammy/flushing skin sometimes during the day but mostly at night.
Cannot tolerate carbohydrates (not for many years) /have many food intolerances
Easy bruising
So, that’s pretty much it. Thank you for letting me join!
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March 5, 2026
MaryO
Diabetes, Undiagnosed
cardiologist, cholesterol, diabetes, endo, Golden Oldie, hematologist, high blood pressure, Mystery Diagnosis, Neurologist, undiagnosed, weight
Two months before my 31st birthday, I was diagnosed with diabetes. I was really shocked considering no other family member (maternal or paternal) had this disease.
Well, as the months followed, so did other diseases such as high blood pressure, high cholesterol, etc. Each diagnosis brought more shock because I felt great and could keep up with any 20 year old out there. Within the next two years I had gain 70 pounds and looked like an apple with popsicle sticks for legs. I also seemed to have more symptoms which seemed to be dismissed by the doctors because it was also a symptom of one of my other diseases.
In the past 8 1/2 years, I’ve had 3 doctors, 3 endocrinologists, a hemotologist, a nuerologist, and 2 cardiologists that just keep attaching my symptoms to one of the labels that has already been given to me. Now, at the age of 40, I feel like I have the body of an 80 y/o. I can hardly walk because of the clots in my legs (have 2 stints), can’t stand for long and bending just kills my back because of the crack in my L5 S1 vertebrae, and among other things, can’t seem to do anything because of the extreme fatigue I have. I have no doubt that I have diabetes, high blood pressure, high cholesterol, clotting problems with my arteries, and everything else they want to label me with, but it seems to me that after only 8 1/2 years, my health shouldn’t have gone down hill so fast. I also take 16 pills a day because each doctor wants to give me a medication for each symptom.
For a few years, I’ve been searching the internet for an answer. I would spend hours and seem to hit a brick wall each time. Still, I wasn’t going to give up. No one gets so sick that quickly from any of the diseases I’ve been diagnosed with. Just the other day, I was watching Mystery Diagnosis . I don’t even remember what it was about, but it did prompt me to start my internet search again. I did something different this time. I didn’t research all of my “diseases”. I simply typed in the search field: “Do any diseases mimic diabetes”. Guess what popped up all over my screen. Yep, Cushing’s Disease. I went to article after article and website after website. I was amazed to find that many of my symptoms were linked to Cushing’s Disease. I couldn’t believe what I was reading. My “diseases” could actually be a symptom of a bigger disease which would explain a lot to me. Now I have another endo which I’ve made an appointment with (a month away, yuk) and I’m going to ask to be tested specifically for Cushing’s Disease.
Below I’ll list my symptoms.
Round “Moon” Face, Fat Lump on Back of Neck, Low Potassium, High Cholesterol, High Blood Pressure, High Blood Sugar, Glucose Intolerance, Insulin Resistant, Muscle Weakness, Fatigue, Anxiety, Irritability, Depression, Decreased Fertility, Decreased Libido, Acne-like Rash, Backaches, Excess Facial or Chin Hair, Slow Healing Cuts or Scratches, Large Abdomen, Insomnia, Irregular Periods, Edema, Scalp Hair Loss, Excess Sweating, Memory Problems, Dizziness, Low Growth Hormone.
I also have a chronically high platelet and white blood cell count. The Hematologist couldn’t even figure it out (Yes, cancer has been ruled out with a bone marrow biopsy). I’m not sure if that has anything to do with Cushing’s or not, but unfortunately I have that as well.
Sometimes we tend to forget that many doctors only spend 7-10 minutes a visit speaking with us and forget about us about 7-10 minutes after leaving the room, and they certainly don’t lay awake at night thinking of us. It is much easier for them to treat a symptom that has already been issued a label rather than find a bigger cause for it, so we sometimes have to take matters into our own hands and help ourselves.
I’m thankful to have found this sight. If I find out that I do not have Cushing’s, I will continue my search, but it is nice to know that I will find an answer someday.
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December 31, 2025
MaryO
Diabetes, Undiagnosed
Buffalo hump, cholesterol, cortisol, high blood pressure, lipoma, lumps, Madelung's Disease, Stretch marks, striae, Type 2 Diabetes
I have a giant buffalo hump on the back of the neck with vertical blue/purple lines below it.
I also have lipomas not symetrical across my upper back. Then there are two symetrical lumps near each arm pit.
Two lab results come back saying I have a normal cortisol level.
I am diabetic, type 2, with high blood pressure, and only slightly elevated cholesterol levels.
I am wondering if I may have Cushings as well as Madelung’s disease. I am very confused.
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December 3, 2025
MaryO
Adrenal Surgery, Ectopic, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments
ACTH, adrenal gland, bilateral adrenalectomy, BLA, cholesterol, cortisol, cure, cushing's, cushing's syndrome, diabetes, Dr. Johnny Delashaw, Dr. William H. Ludlam, ectopic, endocrine, God Bless, hair loss, hypertension, hypophysectomy, Internal medicine, ituitary Diseases Clinic, MRI, Pacific Northwest, PCOS, Pituitary gland, Polycystic ovary syndrome, Stretch marks, striae, success, surgery, Swedish Hospital, Swedish Neuroscience Institute, thyroid, tumor, update, weight
Original Bio:
My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.
Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.
In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.
My symptoms kept getting worse with time.
In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.
As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.
In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.
Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.
We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.
I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.
I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.
I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.
I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…
Update December 12, 2013:
It’s been 10 years now since I had my “cure” for Cushings. I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy. I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.
I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back! Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.
Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings. God Bless to all!
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September 21, 2025
MaryO
Bipolar, Diabetes, Golden Oldies, Other Diagnosis, Thyroid, Undiagnosed
anxiety, Bipolar, blood clot, Blood pressure, blurry vision, Buffalo hump, cholesterol, depression, fluid retention, Golden Oldie, heart attack, hysterectomy, Lasix, migraines, muscle ache, neuropathy, obesity, painful joints, thin skin, thyroid, Veteran, weight
A Golden Oldie
I am a Veteran who goes to the Veteran Clinic for my healthcare. I have been going there for a little over a year. I go to a womens clinic for both my primary care and gyn.
Backing up a bit…Since my youngest son who is turning 18 next month was about 3, I recall the onset of many of the symptoms of Cushing’s Disease. However, I didn’t realize what was going on. I believe a lot of my symptoms started when I fell down backwards down a flight of stairs breaking my elbow and wrist. I really haven’t been the same since. I have slowly put on 120 pounds over the years, all of it being in my mid-section. I have suffered off and on migrane headaches. My arms and legs are thin as rails compaired to my mid body. My skin has gotten transparent and dry. I have the thick cushion of fat tissue between my shoulder blades.
Then in 2007 I had a severe hysterectomy due to massive bleeding/clotting and cysts. I had serious complications which include blood clots in my legs and also a PE. I have gone down hill from there. My bones, muscles and joints ache so bad and can barely get up and down. I can’t hardly stand more then a few minutes at a time. I have fluid retention so bad that my current doctor finally put me on lasix daily. Finally I suffer from depression and anxiety and I hate to go out in public because of my condition. Though my husband gets frustrated with me he is still very protective of me and helps.
I have had so many doctors imply that my problems are phycological or due to my obesity and I am simply tired of that. I am on 17 medications now due to blood pressure, fluid retenstion, thyroid, diabetes, neuropathy, depression and anxiety, cholesterol and to insure against a heart attack.
I am 52 years old and I feel like my life is coming to an end. I just recently was reassigned to another primary doctor as my old one left the clinic. I didn’t like her at first, her personality was so different from my last doctor. But Friday she did a completed physical and gyn exam. She asked me if I had ever been diagnosed with Cushing’s Disease. I had never heard of this disease. She started pointing out all the classic signs. She decided she wanted me to have a blood test and was very determined I had it done. I went home and researched it and indeed I have all but maybe one of the symptoms.
I am a little bit nervous about it and realize its a waiting game as far as tests and more test. On the other hand I feel like I can finally put a name to what’s been going on and hopefully feel better. I am glad I found this support group and would enjoy talking to others
UPDATE March 6, 2012: Also, additional systems include excessive hair growth on my face, foggy vision, inability to concentrate, red patchy marks on my arms and I have been told I am slightly bi-polar as well at suffering from anxiety and depression.
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July 22, 2025
MaryO
Other Diagnosis, PCOS, Undiagnosed
acne, cholesterol, contraceptive, cortisol, gynecologist, metformin, ovary, PCOS, periods, Polycystic ovary syndrome, triglyceride, vegan, vegetarian
Im currently 24. In 2008 I was diagnosed with PCOS because of my very absent periods, an ovary full of cysts and acne. At that moment the gyno only gave me contraceptive pills.
In 2013 another gyno started giving me also metformin 2x500mg. Also because all these years my cholesterol and triglicerides were always high even though I have been vegan and vegetarian for over 7 years.
In 2010 I fractured one ankle and in 2014 I fractured the other ankle and Ive had multiple surgeries to try to fix that. Ive had continuous weight gain all these years even though I watch my diet and I exercise all the time.
I recently asked my GP to test for cortisol, also because now I’ve been almost a year without any libido. It turned out that my AM cortisol was high, and she repeated it a month later and it came out even higher. Now she referred me to an endocrinologist.
I have the appointment with the endocrinologist in three weeks. Im very nervous about this appointment, and I really just want to figure out what is wrong with my body. Wish me luck 🙂
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July 15, 2025
MaryO
Golden Oldies, Pituitary, Pituitary Surgery, Recurrence, Treatments
bleed, cancer, cholesterol, doctors, endoscope, Golden Oldie, hormones, hump, menstrual cycle, Moon face, Pittsburgh, pituitary, pituitary tumor, pregnant, recurrence, skin, strata, Stretch marks, surgery, tumor, Weight gain
Originally from December 29, 2007
Hi there, I am 26 but I was diagnosed at the age of 16 with a pituitary tumor, 17 when I had removed the first time and 19 the seconded time.
Here is the story. I was pregnant at 15 and gave birth at 16. My son was born in June (I was 135 lbs) by December I was 240lbs. I had all the classis symptoms. Weight gain, thin skin, upper back hump, moon face, lack of a menstrual cycle, high cholesterol and the strata (all over stretch marks).
I was diagnosed in March in July (1999) since I live near Pittsburgh I had surgery with one of the doctors who developed the use of the Endoscope for removal of pituitary tumors. I had been told that the tumor would not come back. It was fine to have more kids. There was one in a billion chance that it would be a tumor that grows like cancer, and then there was a one in a million chance that there would be any of the tumor left behind that could grow back. A
fter words I lost most of the weight and the moon face. I had no need for hormones, because they only remove part of my pituitary, I also graduated high school and was married.
I felt very good when I gave birth to my 2nd son 22 months later (April 01). I was 160lbs. Well, I tried to ignore the weight gain, the lack of menstrual cycle, but when my hump started to come back and when in infant’s finger nail scratched me and I bleed, I self diagnosed this time and went to the doctor for confirmation.
I was 280lbs when I went in for the second time in November (2001). Now I am 90% sure there is a tumor up there I do not know I do not want to have a M I R to see. My husband and I will not have any more kids.
I still have a fear that it will come back on its on or if I suffer a body troma that causes the pituitary to enlarge that it will cause the tumor to grow and I will have to go through this again. I am still struggling to lose this weight. I am now 230
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