October 28, 2025
MaryO
Adrenal, Cyclic, Ectopic, Familial Cushing's, Food-Dependent Cushing's, GIP-Dependent Cushing's, Pituitary, Pseudo-Cushing's, Recurrence, Success Stories, Undiagnosed
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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 6, 2026
MaryO
Pituitary
allergies, Birth control, brain fog, cortisol, cushing, cushing's syndrome, hair loss, headache, hirsuitism, PCOS, period, Polycystic ovary syndrome, rash, saliva, sinus infections, Stretch marks, striae, Symptom, tired, ultrasound, weak, weight
Hi!
My name is Marki, and I am a 21 year old student. I have been suffering from Cushing’s-like symptoms for a while now, and the doctor at my college health center just recently told me that I most likely have Cushing’s.
My symptoms have all intensified over the past few years. I have gained almost 60 pounds in the last 11 months, I feel weak and tired almost all the time and my muscles have gotten so weak that I have a hard time walking up 2 flights of stairs to my apartment. I sleep for at least 10 hours a night, and have to set at least 5 alarms to be able to wake up for my 9:15 class, and I still end up missing it a lot of the time. I feel like I am walking around in a fog most of the time, and school is harder than it’s ever been. I am having a really hard time retaining information, even after studying for hours.
About 3 years ago I started growing hair under my chin, and getting stretch marks on my boobs. The stretch marks have now appeared on my belly below and around my belly button. My hair has always been really thick, and I have noticed that it is a lot thinner than it has ever been. I have also developed a lot of new allergies, including raspberries, tide laundry soap, nickel, and something else that I haven’t figured out yet, so I have a rash all over my stomach, armpits and thighs. I have had severe headaches since I was about 14, and they are getting more and more common. I also get frequent sinus infections. I got implanon (a type of birth control that they implant in your arm) about a year ago, and haven’t had a period since it was inserted. I have been on birth control (perscribed because of the hair on my chin) since I was 17, so I don’t really know if my period would be regular without it or not.
When I went into the health center I told the doctor about all of these symptoms, and his first thought was PCOS. I had an ultrasound, and there were no cysts. He then started testing me for Cushing’s and referred me to an endo in San Francisco. The endo ordered both a 24 hour urine test and a midnight saliva to be done before my appointment. These were the results:
24 hour-
range- 0-50
me- 49.7
Midnight saliva-
range- .5-1
me- 9.16
So, my free cortisol was within range, and my saliva was more that 9 times the normal levels. I have read a lot about Cushing’s in the last two weeks, but I still have a lot of questions! If anyone has any advice on how to deal with the sleep issues, what tests to request, or any other advice, I would really appreciate it! I need to figure out how to stay awake during the day so I can pass my classes!
Update:
My names Marki, and I am a 21 year old senior at Westmont College. After I finish my bachelors I plan on going to Physicians Assistant school to get my masters. This has been a crazy year for me. A few months ago, my doctor told me that I might have Cushing’s, and since then it has been a constant parade of tests. My body and attitude have changed SO much, and it is making school and life in general really hard. I am lucky to have the support of my family and friends, and I can’t wait to get through this and get on with my life! If anyone has any advice, feel free to message me 🙂
May 6, 2026
MaryO
Pituitary
anxiety, cushing's, depression, despair, health insurance
I was diagnosed with Cushing’s approximately 10 months ago. My health insurance ran out so I have had no treatment.
The psychological symptoms are very bad – depression, anxiety, loss of emotional control.
All I am able to do is go to work and that is becoming very difficult. Despair.
May 6, 2026
MaryO
Adrenal Insufficiency, Pituitary, Pituitary Surgery, radiation, Treatments
Adrenal insufficiency, Buffalo hump, Conditions and Diseases, cushing, cushing's syndrome, cyber knife, Endocrine Disorders, gamma knife, Health, hydrocortisone, hypertension, Megace, moonface, Pancreatitis, pituitary, radiation, striae, surgery
I was dianosed with Cushing’s Disease in 1998. At the time I looked like a textbook case. Moon face, buffalo hump, wasted extremities, straiea, hypertension, pancreatitis. Had resectioning of pituitary in 1998 but had reoccurance in 2002 at which time I had the cyber knife gamma radiation treatment.
Now no cushing’s but I have adrenal insufficiency from the treatment and have to take replacement hydrocortisone and I also take Megace. I have been sick lately and don’t have a very good Endo so I have many questions and I am seeking feedback from others who have post-Cushing’s complications. I want to continue to be active and productive and hope to learn from and also share with others.
May 6, 2026
MaryO
Diabetes, Pituitary, Pituitary Surgery, Treatments
Blood test, cortisol, CT scan, cushing's, cushing's syndrome, diabetes, Health, Magnetic resonance imaging, MRI, radioactive injection, surgery, weight, X-ray computed tomography
In the early part of 2007 I was feeling very tired, was gaining weight even though I was eating 800 – 1000 calories a day and exercising 1 hour per day. I would go to my doctor and she would dismiss me inferring that I was just an overweight, middle aged woman looking for a quick fix to loose weight and control my diabetes. This went on for several months with me seeing her every 3 or 4 weeks with the same complaint.
Finally in mid 2007 I said enough was enough and demanded that she order some blood tests. Well, she ordered the 24 hour urine collection test for cortisol and lo and behold, my cortisol levels were off the chart. I was immediately referred to my endo and after ruling out many other things with MRIs, CAT scans and full body scans with radioactive injections,
I was referred to my neuro surgeon and he saved my life. The beginning of December of 2007, I had surgery to remove 1/2 of my pitutary gland that had micro (benign) tumors. 12 hours after surgery, my cortisol levels wer down to the high “normal” range.
Today, 5 years later, I have no cortisol issues at all and now my endo says I have a “history of Cushings disease”.
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
Adrenal
adrenal gland, Adrenal insufficiency, blood, cancer, Conditions and Diseases, cortisol, cushing's syndrome, dex test, dexamethasone suppression test, glaucoma, Health, heart palpitations, intolerance to cold, migraines, orthostatic hypotension, Ovarian cancer, tachycardia, weight
The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia
I have just been diagnosed with glaucoma, and I possibly have subclinical Cushings … though I am small (4’10”, 99 pounds), I’ve realized that I have put on an average of a half-pound each month since July of 2012, after years of being fairly stable with my weight.
Also for years I’ve had heart palpitations, a life-long intolerance to cold, and orthostatic hypotension and tachycardia, as well as migraines. I had to push my gyn/onc to get a referral to a endocriniolgist — every doctor seems to think that a “benign” adenoma is an okay one that can be left alone.
Have done an adrenal insufficiency test and will be doing the dex test (two 8 am blood draws) this week.
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 5, 2026
MaryO
Adrenal, Diabetes, Pituitary
Adrenal tumor, Blood pressure, Conditions and Diseases, cushing's, cushing's syndrome, energy, Health, hypertension, mood swings, Pituitary adenoma, poor quality of life, weight
I’m married to my best friend who’s health has steadily declined for around 15 years. High Blood Pressure, Diabetes, weigt gain, mood change are part of the decline.
He had a pituitary tumor removed in May 2012 after a diagnosis of Cushings. We know that he still has an adrenal tumor that the endocrinologist thinks was fed by the pituitary tumor.
My husband, my best friend, thinks they have ruined him forever. He feels worse than ever before. The doctors say it may take up to a year, that this has been coming on for a long time. His blood pressure is now controlled and he has gone from 12 blood pressure pills a day down to 2 1/2 pills per day. Other that that, he has a poor quality of life with no energy, no happiness.
I wish I knew more and could help and support him better. I am the fixer in our life, our family, our business that we have worked in together for 10 years and I’m so sad for him.
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