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
Pituitary, Pituitary Surgery, Treatments
adenoma, Dr. Brooke Swearingen, hip replacement, Mass General, pituitary, weight
I am a 66-year old retired French teacher and artist.
Last fall began Cushing’s screening, a year after hip replacement due to AVN. Referred to Dr. Brooke Swearingen at Mass General by Maine Endocrinologist in December 2011, Surgery Feb 2, 2012 to remove a 3mm pituitary adenoma, excellent post-op, no pain, walked out of hospital after one overnight.
Recovery has been gradual but encouraging. Lost 20 lbs but would like to lose more…
I would love to compare notes with other Cushing’s patients to know what to expect in recovery.
January 22, 2026
MaryO
Guillain-Barre syndrome, Other Diagnosis, Pituitary, Undiagnosed
24-hour urinary free cortisol, ACTH, adenoma, cortisol, dexamethasone suppression test, fatigue, Guillain-Barre syndrome, headache, hyperpigmentation, kidney disease, MRI, nausea, neuropathy, pain, peripheral nerve disease, pituitary, swelling, UFC, undifferentiated connective tissue disease, vomiting, weight
Hi. I am retired RN in Oklahoma.
I have undifferentiated connective tissue disease, chronic kidney disease and peripheral nerve disease in arms and legs.
I had an autoimmune disease in 1972 called Guillian Barre that left me with residual neuropathy.
Recently my PCP noticed I had hyperpigmentation and thought it might be Cushing’s. My ACTH was in the upper 70s, serum cortisol normal. My weight has been out of control for years.
I did 24 hour urine with normal result. My PCP ordered MRI and showed suspicion for 6 mm adenoma left side of pituitary. Saw endo who ordered 1 mg Dex test. To see neurosurgeon in Dec.
Have also had some severe headaches and intermittent nasea and vomiting (both unusual for me). Also unreasonable emotional outbursts totally out of character for me. If I have Cushings it must be cyclic or subclinical. I haven’t done my Dex test yet because I just don’t know if I should do it when I feel really bad or really good. I’ve felt like my life has been a roller coaster of highs and lows for over a year now.
My endo said if my Dex test is positive she would need to send me to Mayo because she has never dealt with this and there is no one in Oklahoma she can send me to. I have read many bios on this site. It’s crazy how long it takes for people to get diagnosed. Literature says timely diagnosis is so important in relationship to good outcomes. I don’t have the Cushings striae. I do have really bad swelling and pain, fatigue. I’ve been on a daily diuretic for almost 30 years. If I miss it my face and hands swell up and one eye gets red and tears. I feel like my problems began after I had my last child 30 years ago.
Sending good thoughts to all of you out there and what you have and are currently going through. There are lots of heroes here, and even if my problems turn out to be something else, this website has been a life savior. Thanks so much for being there.
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December 6, 2025
MaryO
Pituitary, Pituitary Surgery, Treatments
24-hour urinary free cortisol, ACTH, adenoma, anxiety, cortisol, depression, endocrinologist, hirsuitism, kidneys, pain, pituitary, saliva, sciatic nerve pain, testosterone, tongue, tumor, UFC
Hi! My name is Tiffiny. I am 34 years old. I was diagnosed with anxiety and depression back in May because of weird pains in my back and on the right front of my stomach. I thought something was wrong with my kidneys and sciatic nerve. I kept getting weird tingling in my legs and face. I was told it sounded like anxiety attacks, which I am sure they were. I am stressed all the time and I don’t know why. I am also very short tempered. I was prescribed meds but I didn’t think I was depressed or have anxiety, so I didn’t take them.
About a year ago I started having weird things going on with my tongue. Every time I would eat anything my tongue would burn and wouldn’t quit bothering me. I noticed that I had white, longer looking taste buds too. I thought it was something I was eating so I kept cutting out foods. Nothing was helping, is it anxiety, is it my imagination, what is wrong with me? I googled burning tongue and lots of things came up, geographic tongue, burning mouth syndrome, and thrush. I decided on August 17, 2014, to go have a doctor take a look at it. He diagnosed me with thrush. I was treated for two weeks. The meds seemed to help but the burning was still there. A month later, one of my kids had a doctor’s appointment. At that appointment, I asked the doctor then if he thought the thrush went away. He said “no it looks like you still had it.” I mentioned to him that I also have major peach fuzz on my face, lots of darker hair on my belly, and darker pigmented spots on my face. I thought I had too much testosterone. He thought my body was for sure out of whack because of the thrush and ordered a bunch of hormone tests. I came in the next day and had my labs done. This is when I found out I had high cortisol!! My results were 28.5 should be between (6.2-19.4). Okay, what the heck is cortisol?? He referred me to an endocrinologist to have it checked out.
The endocrinology appointment was scheduled for November 3, 2014, three months later, really! I put myself on the cancelation list and got in rather quickly, September 30. Thank goodness because I am a severe stress case! At the endocrinologist visit, the doctor walked in and said “wow, you are not what I was expecting.” He started talking about the symptoms of Cushing’s syndrome. I am 5’3, 110 pounds, an avid runner and I eat pretty well. I do have very thin arms with bulkier muscles. My veins do poke out on my lower arms and are very visible, very dry hands and red fingers. The red hands/fingers started about two or three years ago which I was told it was Reynold’s disease or some skin condition. The red hands bother me very much, they look very old for my age and it is embarrassing. The doctor then ordered me an ACTH test and two 24 hour urine tests because my blood cortisol results were very concerning to him. Both tests have confirmed Cushing’s. My ACTH levels indicated that it most likely is a pituitary tumor. I was ordered to have an MRI a week later and they found a 6.5mm to 7mm. tumor in my pituitary gland. At this point I was referred to a neurosurgeon.
I met with the neurosurgeon a week later. Their pituitary clinic happened to be the following Friday and they only do it once a month, which happened to be on Halloween. He ordered two more night time saliva tests, a week a part, and the results where two and three times past the limit. I am now scheduled for surgery on Dec. 9th and I am totally freaking out. I do notice weakness in my muscles and have an achy body sometimes. My hair on my head has been falling out a ton for many months. I thought it was from nursing and a bad hair coloring! I keep finding more symptoms I really didn’t notice. Face is getting rounder on one side, I am shaky, cold all the time and believe I am losing feeling in my fingers. It is very hard to distinguish between hot and cold, I have to use my arm. My memory is horrible! I do get acne under my chin and on the sides of my jaw. I get obsessive about everything! I am very antisocial, think everyone is judging me or looking at my face hair, hands, etc. I feel so bad for my girls and husband! My obsession with my tongue and peach fuzz has hopefully saved my life! Trying to be POSITIVE for the steps forward!!
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November 19, 2025
MaryO
Cancer, Other Diagnosis, Pituitary, Pituitary Surgery, Thyroid, Treatments
adenoma, Dr. Maria Fleseriu, pituitary, remission, thyroid cancer, transsphenoidal
Diagnosed with Cushing’s Disease March 2015 .
Had Transsphenoidal hypohysectomy surgery to remove a 6mm adeoma on April 29th .
On replacement hydrocordisol for a year and a half .
Currently in remission. Also went through Thyroid cancer treatment 2 years before Cushing’s diagnosis .
Krista added her Helpful Doctor, Maria Fleseriu, to the Cushing’s MemberMap
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October 12, 2025
MaryO
Adrenal, Adrenal Surgery, Cyclic, Male, Treatments
24-hour urinary free cortisol, ACTH, adenoma, Adrenal, Adrenalectomy, aldosterone, anxiety, Blood pressure, Blood test, bone density, cortisol, cyclical, cyclical Cushing's, depression, dexamethasone suppression test, endocrinologist, glucagon, glucose, macro nodular adrenal hyperplasia, male, metoclopramide, Multinodular adrenal hyperplasia, pituitary, renin, scan, stress, UFC, vassopression, weight
Hi, I have been diagnosed with probable cyclical adrenal cushings. This all started after a scan on my abdomen for something unrelated revealed bilateral adrenal adenomas. When I googled adrenal adenoma everything fitted into place. I had been depressed , put weight on which were my main symptoms along with anxiety.
I was then referred to an endocrinologist in the UK who ordered some initial tests. I did Two 24hr UFC’s on consecutive days one came back at 36 and the one the day after was 91(normal below 50. Another time the normal range was 165 and the 1st one was 108 and the one the day after was 393.
I then did an overnight dexamethasone test and suppressed below 50 to 48. My endocrinologist then said he didn’t think I had cushings and said come back in six months and said it might be due to stress. I then got a second opinion and then the real testing started.
Roll forward four years and I have done about 30 – 24hr UFC’s numerous ACTH and full blood counts. renin and aldersterone, metoclopramide test, glucagon test, vassopression test, oral glucose stimultation test, day curve cortisol, spent a day in hospital walking round the ward for two hours, then eating a mixed meal and then sitting down for two hours while they tested my cortisol every hour . Did a Low Dose Dexamethasone Test and came out in a rash and my blood pressure dropped so got told I can’t do the test again. Had a bone density scan. I hIad a pituitary scan that revealed a lump inside my tongue and then had to have a whole body scan followed by a tongue biopsy(which turned out to be benign.
I have had about five CT scans on my adrenal glands and was referred to an endocrine surgeon this week who is going to perform a right adrenalectomy. The right one is 4cm in diameter.
He said looking at the scan he thinks it looks like macro nodular adrenal hyperplasia but wont know till pathology get to examine the specimen.
It’s been a long, long journey but finally looks like it’s coming to a conclusion now.
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September 11, 2025
MaryO
Adrenal, Adrenal Surgery, Golden Oldies, Other Diagnosis, Pheochromocytoma, Pituitary, Treatments
adenoma, Adrenal, eyes, Golden Oldie, hysterectomy, insulin resistance, MRI, occular migraines, pheochromocytoma, Pituitary adenoma, weight
A “Golden Oldie” from 2008.
Hi everyone. My name is Jeannine and I am an old member of this site. I haven’t been on it since 2003 because I thought my problems were over. Obviously, this is not the case.
I am a 49…soon to be 50. I’ve been married for 29 years and have two sons(26 & 20) and one daughter-in-law. After 3 long years of being told I was crazy and lazy, and searching for answers for my rapid weight gain, fatigue, and lots of other weird symptoms, an adrenal adenoma was accidentally discovered when having a CT scan before my hysterectomy.
After initial testing, I only had very mild elevations in a few tests and negative results in most others. I was told to wait and watch. As the year progressed, I became sicker and heavier. I begged, demanded and finagled tests, still only to be told I just “wasn’t sick enough.” One year and 100 lbs. later, my 24 hr. urines were finally high enough to convince the dr. to do surgery.
My test results were never very clear and I was never given a diagnosis, even after surgery. The weird part about my test results were that I tested positive for a pheochromocytoma as well as for a cortical adenoma. I had my left adrenal gland removed in April of 2003. It was not a pheo and the pathology listed “adrenal cortical adenoma”.
I never had to have any hormone replacement, and aside from not losing the weight and becoming insulin resistant, I was cured. I couldn’t lose the weight on my own, so I joined Optifast, the medical liquid diet program. Over the course of about 6 months, I lost 60 lbs.
Unfortunately, as I started to re-enter normal eating patterns, the weight began to return. There was a steady weight gain almost every week for the past 12 months. I have now gained 50 lbs back. Aside from gaining weight, A few months ago, I started to feel badly again. I immediately had my endo send me for 24 hr. urines and basic blood work, but everything was negative.
Then, a few weeks ago, I went to a new opthamologist to have my eyes examined. I mentioned to him that I sometimes got weird visual symptoms with blurry lines in my eyes. I had first noticed them a few months after my adrenal surgery four years before and they had continued to occur sporatically ever since. I had my eyes examined twice during these last 4 years and nothing was ever shown to be wrong. The new dr. suspected occular migraines, but because of my history with the adrenal tumor, he decided to do a cranial MRI. Lo and behold, I was just diagnosed with a 3-4mm pituitary tumor. So…..here I am, back on the boards looking for answers. I have an appt. in three weeks to see my endocrinologist and the testing will begin.
While I really don’t want to be here, it’s nice to be able to come “home.”
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August 27, 2025
MaryO
Adrenal, Adrenal Surgery, Treatments
adenoma, adrenal adenoma, adrenal surgery, anxiety, fatigue, hump, hydrocortisone, itchy, pituitary, red face, sleep, slow healing, tired
Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .
I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.
I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.
Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.
Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.
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June 27, 2017
MaryO
Golden Oldies, Other Diagnosis, Thyroid, Undiagnosed
adenoma, Golden Oldie, Grave's Disease, hydrocortisone, steroid, thyroid, undiagnosed
Originally from December 20, 2008
Being checked for Cushing’s. Have adenoma, long term hydrocortisone user, Graves Disease, a lot of the symptoms.
Don’t know much about Cushing’s.
Having cortisol,diabetes,lipid,blood test all next week.
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June 8, 2016
MaryO
Other Diagnosis, Pituitary, Thyroid
adenoma, cortisol, CT scan, Cushing's disease, Dr. Roberto Salvatori, goiter, MRI, pituitary, thyroid
I was diagnosed in April 2016 with Cushing Disease caused by a pituitarty adenoma. I believe I have struggled with these syptoms for over a decade.
I had a goiter removed from my thyroid in 1997 and have had numours biopsys on other nodules on my thyriod over the years.
Fortunately, I changed doctors and walk into Dr. Levetan office in Chestnut Hill Hopital. The discovery of my high cotisal levels, many tests, MRIs and a cat scan confirmed my diagnonis. She gave me many answers to different symptoms I have been struggling with that seem to be worse by the day.
In May, I met with Dr. Salvatori at John Hopkins and I am scheduled for surgery 8/10/2016.
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