May 12, 2026
MaryO
Undiagnosed
antidepressant, Blood test, bruising, chronic sinusitis, concentration, cushing's syndrome, depression, EEG, Electroencephalography, epilepsy, Epileptic seizure, fatigue, foot pain, lethargic, Magnetic resonance imaging, Major depressive disorder, moonface, MRI, pain, PCOS, periods, Polycystic ovary syndrome, seizures, sinus infections, Stretch marks, striae, thin skin, thyroid, weight
Hi Everyone
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.
Thanks for listening
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May 9, 2026
MaryO
Addison's Disease, Adrenal, Adrenal Surgery, Ectopic, Pituitary Surgery, Thyroid, Treatments
Addison's disease, adrenal gland, adrenal glands, adrenals, bilateral adrenalectomy, BLA, Blood test, Buffalo hump, Conditions and Diseases, cortisol, cushing, Cushing Syndrome, DI, diabetes insipidus, fatigue, headache, Health, Ketoconazole, Mass General, migraines, mood swings, muscle weakness, pituitary surgery, surgery, sweating, thyroid, UFC, urine, weight
I was diagnosed with Cushing Syndrome in June 1999. At that time my urine cotisol level was 342.
Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.
I had pituitary surgery at Mass General because my state didn’t do that type of surgery. After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.
When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.
In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.
I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!
May 8, 2026
MaryO
Undiagnosed
acne, anxiety, Blood test, bruising, Celiac, cortisol, Crohn's, cushing's syndrome, depression, diarrhea, dry skin, eczema, fatigue, Fibromyalgia, hair, Health, high blood pressure, hypertension, IBS, insomnia, Irritable bowel syndrome, kidney infection, kidney stones, low ferritin, low iron, night sweats, painful joints, periods, skin, thyroid, UFC, Vitamin B, Vitamin D Deficiency, weight, Weight gain, Weight loss, Weight Watchers
I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.
Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones. My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.
I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.
I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.
The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.
I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.
I need advice.
May 7, 2026
MaryO
Diabetes, Hashimoto's, Undiagnosed
ACTH, Adrenocorticotropic hormone, biopsy, Blood test, Buffalo hump, Conditions and Diseases, cortisol, cushing's syndrome, Endocrine Disorders, eyes, fat, fatigue, goiter, hair, Hashimoto's, headache, Health, hirsuitism, insulin resistance, muffin top, nodule, osteopenia, pain, saliva, sleep, Thyroid scan, UFC, urinalysis, Victoza, weight, X-ray computed tomography
I have been seeing the endo for the last couple of weeks. Lots of blood tests, saliva test, 24 hour urine test. Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.
Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance. First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH. Doctor said possible cushings. Have had extreme fatigue, beard on chin. Muscle and bone pain consistently. Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia. Appt. with endo tomorrow to get results of 24 hr. urine test. Salavia test said was normal.
Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all. She said that I had the hump, muffin top, and belly fat, lean arms and legs. Eyes are puffy all the time now. Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free. Eat lots of vegetables and fruit as well as a little protein. Have not had a mri or cat scan yet. Probably will be next on the list. Will post after my doctor’s appt. tomorrow and update my bio.
I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.
May 6, 2026
MaryO
Adrenal Insufficiency, Adrenal Surgery, Bipolar, Diabetes, Pituitary, Pituitary Surgery, Recurrence, Thyroid, Treatments
Addison's disease, Adrenal, adrenal gland, adrenal glands, Austin Powers, bilateral adrenalectomy, Bipolar, BLA, cushing, cushing's syndrome, Depakote, diabetes, dog, dopamine, double vision, e. coli, Family medicine, fatigue, fludrocort, Health, heart attack, hydrocortisone, OHSU, Paul Newman, potassium, recurrence, thyroid, Vicodin, vomiting, weight
I Am 52 yrs. old . My sympmtoms began when I was 40 yrs. old. I was at at a yearly physical. I was extremeley athletic. I used to ren 70 miles a week. when I was 17 to 19… dopamine I believe kept me well.
One year prior to my symptoms ..I was 39. I was very fatiquiged..my children were suffwering. They were 6 and 9. They are now 17 and 20. I feel I stopped raising them at this age. If any of you have seen the Sting the movie with Paul Newman obbserve that he dunked his head in ice. I was at Lincoln city , Oregon when I attemted this. procedure. I say procedure and I didn’t even know a tumor was forming on my pituairy gland. Who kneew? Not me. It didn’t even occur to me that a growth was growing in my brain!!
I went from 135lb to 265lb. in 3 months. I was so frightented!!!!!!!!!! My doctor told me to go to an encronologist…very important DOCTOR!!! Most doctors do not have the slighist idea what Cuhing’s is ..Dogs ,horses, and PEOPLE get it. Some doctors are either dumb or totally ignorant. The E. doctor said it looked like I had Cushing’s syndrome. I then made him fall off his chair in laughfter! My family and I recently put a family dog down with Cushing’s disease. I wanted to know if it was contagious?? No, he said wiping his eyes from laughing. He appologigized when I started crying.. I wanted to know how I got it. My dogs was in the adrenal glands. Fatal. We said goog-bye to BUDDY>> My doctor said he hoped I did not have the same dianosis.
After thousands of dollars later..Thank goodness we had great West insuanarce..Get it if you can. Covered everything 100 percent. Discovered a benign tumor on my left pituiary gland. They removed it through my nose . I also had my 9th sinus surgury. It was also from my left nostril. I got fake diabetes. It went away when I left the hospital. The weight started dropping with the help of a nutrisionist. I was taking hydrocortisone. pills. I lost 65 lbs. A few years later my head started hurtimg worse.
After One day of test at a major University OHSU I was diagnosed again with the same tumor . but 3x’s bigger . Surgery through my mouth. Weight came back and some. I asked what my options were? #00lbs, heart attack and death. They told me to remove my adrenal glands. I did. I now have diabetes ,I take 200mg. because my thyroid is so large. Guiess what?? My immunec system is nill.
I wanted to be healthy I loved bananas… get what I got ?? I got the e-coli scare with the spinacach in the bag. E.R. 3 weeks . Everyone in yellow smocks.. No visitors! June 2007… I lost 40 lbs. I was going out to lunch with my husband saw double. Uncontrollable votimiting… E.R. Encronologist. or family doctor. After driving 90 miles an hour 45 minutes away we arrived. I was talking all the way through it . No pulse ..I said am I dead? My doctor said Shut up. No heartbeat. I said am I dead yet? She said shut up agin. I wass vvvvvvvvv teching. I said where are the cameras for HOUSE the t.v. show. I sell novelty neck ties my huband Allen just so happenned to be wearing a Bug’s Bunny tie…I guess you know what i said ..What’s up doc??
The Paramedic behind me was 2x’s larger than my husband He said I was going to the hospital. They put me in the ambulance. Allen asked my husband if he wanted to come . He said he would follow. When they closed the door Allen said if you feel anytjhing hit my knee. 10 seconds later I hit his knee as hard as I could. I felt an elephant!! If you want me to tell you what death is ask me. I died for 5 seconds. plus I was clinically dead at the doctor’s office. My potassium level was7 normal is 4.2 to 5. If anyone has seen Austin Powers drinking poop quadruaple it I attempted to drink it. Started vomiting it. A Doctor was walking by…USE ANOTHER ORAFACE!!!! The butt. I was drowning. Needless to say , my children were screwed up again.. I called the oldest Brandon ,the youngest Nathan and a very nice gentleman if i wasn’t married I would marry him…SHAROn 14, MEGAN 11 and ALLEN!! I now take fludocrt and hydrocortisone @ 4:00 P.M. everydyt. If I miss two consecutive days I will die.
I am also Bi polar I feel their is a correlation with Cushing’s disease. I take Depacote etc. 12 more pills plus hydrocortosone in the morning too! I Have 2 books at home Manic Depressive Disorder. By Fredrick Goodwin and Jay Jamison. Worth reading. Stated Cushing:s disease is derived and assossiated with bipolar. I believe I have been bi polar from birth. Only episodes I had as a child…TRAUMA!!!!! I now have addison’s disease too! What else could go wrong?
By the way, I have a theory bipolar is assosiated chromosome 13. I also think cancer is a virus. Hit or miss. Cushing’s is fatal i not treated properly. Adrenalectomies are the worst . Take Vicatin .I threw it at my husband I did not want to get addicted to it like House. I used ice 24/7. I won’t go into the detatails it was bad. If you do get one , move I used a swifter, and a cane. No wheel chair or death for me!! I’m a fighter!!
Thank you for allowing me me to tell my story. I want to write a book about my experiences. I hope there is a publisher out there so I can get my Life story across!!
Sincerely,,
Linda
May 5, 2026
MaryO
Hypothyroidism, PCOS, Undiagnosed
acne, Alopecia, Buffalo hump, Chronic fatigue syndrome, Conditions and Diseases, cushing's syndrome, dex test, dexamethasone suppression test, fatigue, hair loss, Health, heat intolerance, hirsuitism, hypothyroidism, irregular periods, metformin, mood swings, PCOS, Polycystic ovary syndrome, shingles, Stretch marks, striae, thyroxine, Weight gain
Hi there,
I’m not really sure where to start! I’m 22, and work full time (10-12 hour shifts) as a porter in the operating department of a city centre hospital- so i’m very very active, constantly walking/lifting/carrying on a daily basis.
I was diagnosed with chronic fatigue when i was 13 after a bout of severe flu/repeated shingles infections, and never really recovered, but i was gradually well enough to live a more or less normal teenage life. I have never struggled with my weight (a constant 9 stone at 5 foot 5), until a year ago, when i suddenly started suffering from extreme weight gain (7 stone in 10 months), fatigue, acne, mood swings, hair loss where there should be hair/hair growth where there shouldn’t be, stria, irregular periods (and when they arrive they’re incredibly heavy, buffalo hump, heat intolerance and all manner of horrible symptoms.
I’ve been diagnosed after tests and ultrasounds with PCOS and hypothyroidism, and am currently being treated with 75mg thyroxine (to be increased), and am due to start on metformin.
There’s been very little improvement in how i feel, and after a pretty horrible meeting with the endo, in which all she really did was call me fat, tell me to stop the late night trips to mcdonalds (I’M VEGAN! mcdonalds is pretty much the antichrist to us!) and refer me to the dietician. i felt really let down and all i could do was try to hold the tears in until i got back to the car.
she didn’t seem to realise that for a 22 year old woman to be feeling more like a 90 year old, is a pretty horrific experience. but i digress…
i’m due to be tested for cushings in a few days time with the low dose dexamethasone, and i know this is awful to say, but i’d jump for joy knowing what’s going on with my body at last.
although i know i have pcos and an underactive thyroid, i just know that there’s something else going on with me, and unfortunately my consultant just won’t listen to me.
my social life has disapeared, i just feel too goddam ill, not to mention my incredibly unsupportive boss, who seems to want to make my life a living hell because i’ve had to take a lot of time off work- she even screamed at me until i cried when i collapsed at work one day. i’ve actually taken to hiding in the toilets in the afternoon to have a nap, and to regroup, just so i can get through the day. never mind that i’m a 22 year old who has gained 7 stone in under a year- it’s hard to feel great about myself!!!
anyway, hopefully one day i’ll find out what’s wrong with me
this was me last year:
and this is me now:
quite a difference huh?! and apologie for the poor fashion sense!
anyway, wish me luck, and and my best wishes for everyone going through diagnoses/treatment for any health issues, we’ll get there in the end 🙂
May 5, 2026
MaryO
Undiagnosed
Arkansas, bloodwork, bruising, Buffalo hump, Conditions and Diseases, cushing's syndrome, depression, fatigue, hair loss, Health, libido, night sweats, sleep doctor, Stretch marks, Weight gain
I am a 32 year old female in Arkansas.
I have not yet been diagnosed with a disease but highly suspect I have Cushings. Over the past 3-4 years I have developed a Buffalo Hump, lost my libido, have drenching night sweats every night, fatigued during the day, tire easily when I excercise, my hair is thinning rapidly, suffer from periods of depression, bruise easily, heal slowly, and scar easily. I also have these little bumps on my arms and torso as well as stretch marks on my sides and upper thighs. I have never had a weight problem but the past couple of years I have gained 70+lbs and have had little luck losing weight and/or keeping it off.
Every time I go to the doctor they do a blood panel and always come back with the same answer “Everything is fine”. EVERYTHING IS NOT FINE!!!!!!!!
I recently was referred to a sleep doctor and during my appointment yesterday I told the doctor I feel like I might have Cushings and need to see an Endocrinologist. I finally got my referral and hope I am on the road to a diagnosis of some sort and an explanation for what is going on with me!
May 5, 2026
MaryO
Adrenal, Cyclic, Pseudo-Cushing's
ACTH, adenoma, Adrenocorticotropic hormone, anxiety, Bone, bone scan, brain, Buffalo hump, Conditions and Diseases, cortisol, CT scan, cushing, cushing's syndrome, DHEA, fatigue, fluid retention, Health, heart palpitations, irritability, Magnetic resonance imaging, moonface, MRI, night sweats, NIH, pituitary, weight
Hi!
I have provided a timeline of my Cushing’s related tests and symptoms.
Symptoms since 1994
Diagonsed: August 2012
Surgery: August 2012
Other Key Dates/Symptoms:
1993-2009: NIght sweats, heart palpitations, difficult losing weight, anxiety
2010:
+Kaiser Acupuncturist checked DHEA levels. Lowest she had ever seen.
+Referred to Kaiser endocrinologist (Dr. Lee)
+ACTH Very low
+Cortisol moderately high
+Abdomen CT showed 2 cm growth (Mis-read as possible cancer by radiologist)
+MRI showed possible small brain adenoma
+Referred to NIH
+Labs normal
+Reviewed MRI/ CT. CT showed 2 cm adenoma (benign) and no brain adenoma. (They said Kaiser overead the MRI and were sure about the CT not showing any cancerous characteristics)
+Initial diagnosis: Psuedo Cushing’s and revised to Cyclical Cushings
2012
+Increased symptoms. Weight gain, hump, fluid retention, moon face, fatigue, irritability
+NIH follow up showed high cortisol (confirmed 2X), low DHEA, low ACTH
+Suppression test confirmed Cushing’s Syndrome
+Bone scan showed 25% bone density loss in 3 years.
+Diagnosis: “Sub Clinical” Cushing’s Syndrome (borderline…I don’t “look” like Cushiing’s unless you compare before and after photos.
+Repeat CT confirmed benign 2 cm adenoma (no growth)
+Surgery scheduled for Aug 27, 2012. Re-scheduled for Aug 29, 2012.
Hope this helps!
Feel free to contact me,
MaidM
May 4, 2026
MaryO
Undiagnosed
acne, Bipolar, blurry vision, brain fog, bruising, Buffalo hump, candidiasis, central obesity, colonoscopy, cushing, cushing's syndrome, depression, duodenitis, edema, endoscopy, esophagitis, fatigue, GERD, headache, Health, heat intolerance, hemorrhoids, hiatal hernia, hirsuitism, IBS, mood swings, moonface, pain, polyps, Primary care physician, Shopping, skin tags, stomach erythema, Stretch marks, striae, Symptom, thin skin, weight, Weight loss
Hello, my name is Dana. I am a 43 year old female. I live near Dallas, TX. I attend college and spend allot of my time taking care of my crazy family, whom I love very much. After reading posts on this site I decided to document my symptoms and experiences.
A couple of days ago I was discussing my endoscopy and colonoscopy results with my mother-in-law. They showed I have GERD, esophagitis, stomach erythema, duodenitis, hiatal hernia, hemorrhoids, nine polyps, and IBS. Wow. After all that she asked me if I was checked for goiter. GOITER? I told her I was just fat. Over the last several years I have gained weight. I did the Atkins diet in 2000 and lost 70 lbs, but gained back 100. Most of my weight is in my abdomen, face and neck. I have relatively small legs, hips and rear. I have had several people think I was pregnant and told how disproportionate my body is. Recently my kids and even my 4 year old grandson have commented on my weight and health. I have noticed that my neck is getting larger, despite being the same weight for a while now. I have poor eating habits, which I am trying to change. I only eat once or twice a day and I am an active person. I do not exercise except for walking. After my mother-in-laws comment I decided to do some research.
I have almost every symptom of Cushing’s. Central obesity, thinning skin and bruising, especially on my hands. Oral candidiasis, axillary and cervical skin tags, round, fat, red face and neck, oily skin and hair with recent increased acne, headaches, fat pad on back of neck, blurry vision, fatigue, back pain, arm weakness, heat intolerance, pain in joints and swelling in hands and feet, thirst, facial hair, and increased heart rate at weird times. I have been treated for depression/bi-polar for several years now. It took two and a half years of experimenting to find something that would keep me stable. I still have emotional instability, depression, cognitive difficulties, and mood swings. I have many stretch marks but only a few are red. I have very fair skin so my coloring is not the same as others. The only symptoms I do not have are irregular periods. I do have what feels like a soft mass under my chin fat. There are lymph nodes under the area, so this could be the cause.
I pray I am able to find a doctor who will not dismiss my symptoms as some of you have experienced. My first appointment will be next week with my primary care physician and we will go from there. Wish me luck and I will update regularly.
Does anyone know of a good endocrinologist in the Dallas-Ft. Worth area?
May 4, 2026
MaryO
Pituitary
fatigue, surgery, tired, tumor
Have had 8 grueling months of tests and could have done with support as I was quite confused. Nothing in Australia. Tried internet but didnt see this site.
Have just had R/O pituitary tumour (va noseM & am in recovery phase.
Not clear on what to expect but am experiencing extreme tiredness.
?Normal.
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