Pit tumor removed 1999. cortisol getting higher last 3 yrs. now confirmed ‘its back’.
Dr wants to remove both adrenals.
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Elaine, Pituitary Bio
November 17, 2025
Adrenal Surgery, Golden Oldies, Pituitary, Pituitary Surgery, Recurrence, Treatments adrenal surgery, cortisol, Golden Oldie, pituitary, recurrence, tumor Leave a comment
Liz D, Adrenal Bio
November 16, 2025
Adrenal, Adrenal Surgery, Golden Oldies, Other Diagnosis, PCOS, Treatments ACTH, Adrenal, anxiety, cortisol, depression, Golden Oldie, hydrocortisone, laparoscopic, Moon face, MRI, PCOS, pituitary, Polycystic ovary syndrome, steroids, stress, surgery, sweat, tumor 2 Comments
Hi my name is Liz and I underwent a laparoscopic adrenalectomy 5/9/12 to remove my 3cm tumor that was releasing high doses of cortisol causing cushings syndrome for what I believe has been about 3-5 years now.
I was diagnosed with PCOS about 5 years ago so everytime I went to a Dr. complaining of my symptoms they blamed it on the PCOS and stress and sent me home. I knew there was something else wrong, the symptoms didn’t add up, my face would get SO red it was embarassing, I would sweat through my clothes 2-3 times a day, my face became puffy, I would gain weight despite healthy eating and working out like crazy, I was anxious, depressed, I never slept, it didn’t add up.
Luckily I am a physician assistant and remembered learning about cushings briefly in school. I read that most tumors were in the pituitary gland so a year ago I convinced my Dr to let me get an MRI of my brain to look for this ‘tumor’ that I was sure was there. Well the MRI came back negative and I was ironically disappointed! I was so sure I had cushings but maybe I was just crazy? The symptoms continued to get worse and I just knew that I had cushings even though everyone told me I didnt because I was still petite and didnt ‘fit the picture’.
I had a colleague write a script for me to check my cortisol level and it was a whopping 56. I immediately called my endocrinologist and got more testing done that week. My ACTH level came back undetectable and I got an MRI of my adrenal gland done and suprise! There was my tumor. I am getting married in August and I am so happy that I got this miserable tumor out now so I can restart my life as a normal person. No one understands unless they have cushings the severity of the disease and how much it can change and effect your life.
I hope that people become more aware of the disease so it is no longer misdiagnosed and brushed off like mine was for so long. I am so frustrated with my Doctors and with myself for being so ignorant, I feel like I wasted a good portion of the best years of my life suffering with this tumor and I hope people read this and realize there is hope! Just 10 days out of surgery I feel like a whole new/better person. I am on oral hydrocortisone now until my pituitary and other adrenal gland wake back up and start producing cortisol on their own but even with the steroids I feel great, a lot of my symptoms have started to resolve since I am at a lower dose of steroids and I can’t wait to start tapering down and be completely off of them hopefully by my wedding.
I am so happy that I was proactive and never gave up looking for my tumor and I cant wait to restart my life 🙂
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Tiffany, Adrenal Bio
November 15, 2025
Adrenal, Adrenal Surgery, Golden Oldies, Treatments adrenal gland, laparoscopic 1 Comment
Only recently diagnosed after several medical issues.
I had to do my own research and had someone non-medically related suggest that I might have cushings. I was in denial and then after having two others suggest it, I asked to be tested.
The result is that I have Cushings of the adrenal gland, I will be having laproscopic surgery on the 15th of November (2010) and have no idea what to expect.
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Sahana (Sahana), Adrenal Bio
November 14, 2025
Adrenal, Adrenal Surgery, Treatments Acanthosis Nigricans, ACTH, Adrenal, anxiety, cortisol, CT scan, daughter, DEXA scan, hair loss, hump, laparoscopic, memory loss, menstruation, Weight gain 1 Comment
My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.
I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.
I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely 🏼
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Bev, Undiagnosed Bio
November 14, 2025
Fibromyalgia, Golden Oldies, Other Diagnosis, Thyroid, Undiagnosed Blood test, chest pain, congestive heart failure, Fibromyalgia, Golden Oldie, PCOS, Polycystic ovary syndrome, shortness of breath, thyroid, undiagnosed, weight Leave a comment
Hello, my name is Bev I have 8 kids yes that is not a typo :)…
I have been fighting whatever is wrong with me for the last 16 yrs. I have been diagnosed in the past as having a thyroid problem. That was always changing( hypo to hyper thyroidism) and now I am told my thyroid is fine. I was diagnosed with fibromyalgia and PCOS.
Now in the last year I have gained about 100 lbs. …No matter what I eat or how much I exercise…. I recently went to the ER because of way more than usual water retention along with chest pain and shortness of breath. They tested me for congestive heart failure, and that is not the problem.
After many blood test and etc. they have “unofficially” said I have Cushings. I go to see the Endoconologist in a week. I dont want to have this as I know noone else does! But it would be a relief to know what is actually wrong with me….. I am tired of this emotional and painful roller coaster my body has me on.
Confused and scared about what is going to happen.
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Cat (ceebee), Undiagnosed Bio
November 13, 2025
Undiagnosed daughter, hypercortisolism, testing, undiagnosed 2 Comments
Hi, I’m Cat and I have a 17 year old daughter who may have Cushing’s. I am aggressively seeking help for my girl.
We are on doctor #3 and have hit another wall w/ this one too. My daughter has several physical manifestations of Cushing’s, as well as two episodes of hypercortisolism confirmed on labwork. However, my daughter’s obvious symptoms are being quickly brushed off.
I need major support in how to navigate this hellish ride and I am seeking guidance in finding a Cushing’s specialist who will either rule in or rule out a diagnosis of Cushing’s in my girl.
thank you
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Bridget H, Ectopic Cushing’s
November 13, 2025
Ectopic, Lung Surgery, Success Stories, Treatments Dr. James Findling, endocrinologist, lung, neuroendocrine lung cancer, PET scan Leave a comment
For years, Bridget Houser experienced a number of symptoms, including mysterious weight gain and headaches, that gradually got worse over time. But while many doctors attributed the symptoms to stress, tests ultimately revealed Houser had a serious illness, Sandra Boodman reports for the Washington Post.
What was causing these symptoms?
Houser had never struggled with her weight before, but she noticed in 2018, months before her wedding, it was starting to increase. In response, she increased the intensity of her workouts and cut her food intake. But still, her weight continued to increase.
Houser wondered if her weight gain was linked to other problems she had experienced in the past. In 2016, Houser started experiencing daily pain in the back of her head, and after the headaches failed to improve after changing her diet and using nonprescription pain relievers, Houser spoke to her primary care doctor and a neurologist.
She noticed the headaches were worse when she wore contact lenses. “It was affecting my daily life and I talked myself into thinking the problem was my contacts,” she said. As a result, she got Lasik surgery, which helped improve her vision and cured her headaches for about a week until they returned.
Months later, Houser said she developed “really bad anxiety. It wasn’t just like I was anxious,” she said. “I couldn’t function. I’m Type A so I knew what anxiety is, but not to this degree.”
In 2018, she spoke to a psychiatrist and a therapist. The psychiatrist noted Houser’s upcoming wedding, saying the event can cause “huge anxiety.” Houser started taking an antidepressant as well as Ativan, an anti-anxiety drug.
While Houser’s weight was in the normal range, she still couldn’t figure out why it was continuing to increase, despite changing her diet and workout. She also noticed her hair, which was typically thick, had thinned so much that her hairdresser suggested she see a doctor.
Houser’s psychiatrist suggested the hair loss could be related to her antidepressant and switched her medication, but that didn’t change anything.
Following Houser’s wedding, she started feeling worse, developing severe insomnia, night sweats, and acne. In February 2019, a nurse practitioner at Houser’s primary care practice ordered thyroid tests, which came back normal, and referred Houser to an endocrinologist, who told Houser she was stressed.
Houser then saw a second endocrinologist who agreed with the first one. “She said, ‘I don’t think there’s anything wrong with you,'” Houser said. The second endocrinologist’s nurse suggested getting married may be causing stress. “She said, ‘I knew on my honeymoon I shouldn’t have gotten married,'” Houser remembered her saying. “‘Are you in a happy marriage?’ I couldn’t believe it.”
Finally, a diagnosis
In addition to testing her thyroid, Houser’s nurse practitioner suggested measuring her cortisol levels. Cortisol is a hormone produced by the body in response to stress and other things. Elevated cortisol levels can be indicative of Cushing’s syndrome, an uncommon hormonal disorder that typically results from a tumor, in which the body produces too much cortisol over a long period.
“She had thrown cortisol testing out there and I think it was always in the back of my mind,” Houser said.
There are various forms of Cushing’s syndrome — the tumors that cause them are typically benign but can sometimes be cancerous and are usually located in the pituitary or adrenal gland, Boodman reports. Sometimes those tumors can develop somewhere else in the body, like the lungs or pancreas. The disease affects around five times as many women as men, usually occurring between the ages of 30 and 50, and can be fatal if left untreated.
Houser asked the second endocrinologist to order cortisol tests. The doctor agreed to the tests but said she didn’t believe Houser had Cushing’s because she lacked the classic symptoms of the disease, which include major weight gain, purple stretch marks, and a fatty lump between the shoulders. Other symptoms of Cushing’s can include insomnia, headaches, acne, and anxiety, Boodman reports. However, Houser did have the “moon face” that is seen in people with Cushing’s.
A series of tests revealed elevated cortisol levels in Houser’s blood, urine, and saliva, with her urine having cortisol levels eight times higher than normal. The endocrinologist diagnosed Houser with Cushing’s and sent her to James Findling, an endocrinologist in Milwaukee who is internationally known for his treatment of Cushing’s.
Findling ordered a dotatate PET scan to find where Houser’s tumor was, finding it in her left lung. Ultimately, after much deliberation, Houser elected to undergo surgery to remove part of her left lung. A pathologist found the tumor was a rare, slow-growing neuroendocrine lung cancer known as bronchial carcinoid, which can cause Cushing’s.
“Fortunately, I think we got it early,” Findling said. “She’s had a sustained remission and a cure of her Cushing’s.”
Why did it take so long to diagnose?
Findling estimates he’s treated as many as 2,000 people with Cushing’s in his 40-year career, and noted that delayed diagnosis is common, because physical changes and other Cushing’s symptoms are gradual.
Findling said that, while doctors are taught that Cushing’s is a rare disease, it isn’t, noting a 2016 study that found 26 of 353 endocrinology patients had the disease.
Descriptions of the disease in textbooks, including the presence of purple stretch marks and a hump, are “almost a caricature,” Findling said. “It’s pretty well recognized that Cushing’s is more subtle than that … and can cause neuropsychiatric and neurocognitive problems.”
Findling also noted that Houser “didn’t look like the typical Cushing’s patient. She wasn’t obese and she didn’t have diabetes or hypertension. It was more subtle than many cases.” It’s possible Houser’s normal weight and lack of hypertension or diabetes could have misled doctors, Findling said.
“I think we’ve moved the needle a little bit, especially among endocrinologists,” he said, adding that “the threshold for screening has got to change. Once you tell a primary care doctor that it’s a rare disorder, it goes in one ear and out the other. They think they’ll never see it.” (Boodman, Washington Post, 10/7)
Adapted from https://www.advisory.com/daily-briefing/2023/10/20/cushings
MizBellaTru, Undiagnosed bio
November 12, 2025
Diabetes, Golden Oldies, Other Diagnosis, Undiagnosed ankle, antibiotics, auto immune, Bell's Palsy, blood tests, calcium, colon, diabetes, diuretic, dizziness, Dystonia, ear, edema, endo, ER, eye, genes, hospital, infectious disease, inflammation, insulin, Iritis, kidneys, mastoid, medications, Menieres, Neurologist, seizure, sinus, staph infection, steroid, surgeries, ulcerative colitis, urine, weight 1 Comment
A Golden Oldie from August 12, 2007
I’m a 48-year old female who has had an awful lot of illness over the past 12 years and starting to wonder if there could be some connection to all of it even though my doctors don’t think there is. They just think I’m one of those unlucky souls who just is sick alot and doesn’t have very good genes.
Here’s what I can tell you about me health-wise:
In 96 I had to have my colon removed due to Ulcerative Colitis. This resulted in 3 surgeries.
In 97 I developed Iritis (inflammation of the eye) and one of the docs said that because I no longer have a colon and have an auto-immune disorder that now my whacked out immune systems has started attacking my eyes. I’m in remission currently but this will be something I’ll have to deal with for the rest of my life.
Things were fairly quiet for a few years with the exception of having Iritis flare-ups and don’t remember anything else going on until 2000 when I broke my left ankle (badly) and now have a steel plate with 11 bolts holding my ankle together. (This happened in 2000 and I still have problems with that ankle).
In 2001 I was diagnosed with Diabetes. This had run in my family (my great-grandmother had been diabetic and I had been borderline diabetic as a child). I started out taking oral medications but after a couple of years this wasn’t enough and it resulted in me being on insulin now for the past 3 years. (Sugars still aren’t under control).
Also in 2001 I had some kind of seizure. Was taken to the hospital and after a lot of blood tests they thought it might be due to a calcium deficiency and recommended I go see an Endo. However, when I wen to see an endo he didn’t think my calcium was deficient enough to cause what had happened and recommended I go see a neurologist. The neurologist thought it was some kind of seizure too and ran some preliminary tests on me but he wouldn’t return any calls for me to find out what other tests should be run. I gave up on him and still never had an answer about what had caused this very weird episode. (What had happened was that I had been at work and all of a sudden my jaw started to tighten up and my head cocked to the side and I started making all these weird grimaces. My mouth became locked up so could barely get any words out. I couldn’t turn my head – it was as if it was locked in place. This is what led the ER (after running blood tests) to determine that they thought my reaction was due to low calcium. To get my rigidity to loosen up, they gave me several shots (can’t remember now what it was) but it finally had allowed my body to loosen up enough that I could finally leave the hospital. This event lasted several hours and moved in to my arms where they became so rigid that it felt like someone was turning my arms inside out. I was completely exhausted after that had happened.
As time went on I would have periodic episodes of what was thought to be a seizure and I just started to learn to live with it. Sometimes only my face was affected and sometimes my whole body would become very rigid and after several hours these episodes would pass but I was always left feeling completely worn out.
Throughout all this time my Diabetes has been almost impossible to get it under control. My insulin doses would be increased but I never could get my sugars to stabilize.
In the spring of 2006 I developed some type of wound on the top of my left foot. It spread and ulcerated and I went to several types of doctors and a couple of them thought it might have been a spider bite of some kind and due to the diabetes it wasn’t healing. I was put on various types of strong antibiotics but nothing was helping. I finally was referred to an infectious disease expert and he said I had some type of serious strain of staph infection and he finally was able to get me on an antibiotic that started to help me heal. I’m now left with some horrible scarring on my left foot but at least I didn’t lose my foot which is what I thought might happen.
In August of 2006 I developed Bells Palsey on the left side of my face. I went to a neurologist (different one from the one I had gone to for my “seizure”). He was the one who diagnosed me with Bells. In the process of seeing him I had one of those episodes in his office and he watched me very closely as it evolved and told me that he thought I had a form of “Dystonia” which is a movement disorder. After a couple of months my Bells resolved although I do have some permanent nerve damage in my face which affects how I smile but it seems to only be really noticeable to me.
In late fall of 2006 I noticed my right ear was hurting quite a bit and was draining. I went to this ear doc and she determined I had a ruptured eardrum with a huge hole that might require surgery. She also determined (after some tests) that I had an infection in the mastoid and said it was imperative that I not let any water get in my ear so that the ear could dry out enough and the infection to clear up before I have surgery. She said it could take a couple months before my ear might be dry enough and told me to come back in a couple of months. During that first visit she also did a hearing test on both ears to establish a baseline. I came back to see her in Jan 2007. When she looked at my ear she said it looked like the eardrum was starting to show some signs it was trying to heal itself (because originally she thought the hole was too big for it to ever heal on its own). She told me to give it some more time and come back again in a couple of months. I came back to see her in April 2007 and the hole was still showing some progress in trying to repair itself so she said she didn’t want to operate if my body could heal the hole. In June of 2007 my left ear started producing a very high pitched ringing sound. I’m not talking a little ringing sound but a sound loud enough it kept me up at night. I had noticed my hearing had diminshed quite a bit in that left ear. I then developed some dizziness and a sense of fullness in my left ear and noticed that when the barometric pressure changed my head felt like it was going to explode. When I went back again to the ear doc she surmised that she thought I now had developed Menieres. She put me on a diuretic and a steroid as this is supposed to help with Menieres but it didn’t seem to do a thing for me. The ear doc ran another hearing test and found that my hearing in my left ear had diminished since it was first baselined last December.
So, a little over a week ago my right ear (the one with the perforated eardrum) started hurting quite a bit and the ear started draining. Again I went back to the ear doc and she determined I had a sinus infection and an ear infection so she put me on an oral antibiotic and antibiotic ear-drops. It’s been a full 7 or 8 days on this antibiotic treatment and my hearing in my right ear has diminshed considerably to where I can hardly hear a persons’ voice on the phone. I’m to stay on this present course of antibiotics for another week. In the past I’ve always responded to antibiotics but it doesn’t seem to be helping this time. My right ear has been draining for a whole week and it’s never done that before.
Also I want to point out that I gained a lot of weight over the last 15 years and I’m now about 120 lbs overweight. I gained 12 of those pounds in just less than 2 weeks recently and my eating hasn’t changed. This is what made me start looking on the internet about rapid weight gain when I came across Cushings and started wondering if I could have this.
At this time I’m waiting on some results from a urine test to see if I’m starting to have a problem with my kidneys because I’m dealing with a lot of edema lately. I don’t know if all the problems I’m having such as the poor wound healing, edema, diabetes, developing high blood pressure are all separate things or more related to my Diabetes.
So at this time I can’t claim that I’m a “cushie” because that’s not been identified yet but I’m thinking that I should get tested for it.
Anyway, that’s what’s going on with me right now.
Thank you for reading this very long bio.
MizBellaTru
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Michelle (Michelle), Cyclical Cushing’s Bio
November 10, 2025
Cyclic, Undiagnosed Buffalo hump, cortisol, cyclical Cushing's, depressed, hives, Mayo Clinic, Weight gain 1 Comment
I am an avid runner run about 15 miles a day then in April I gained 50 lbs my worst nightmare. I gained 50 lbs in two lbs with no change in activity or eating. I was ashamed and embarrassed I didn’t want anyone to see me my friends or family.
Then I broke out in hives all over my body I went to urgent care. They saw a large hump on the back of my neck thought I had cushings. I saw 10 different doctors in la. One passed me off to another.
It was a nightmare then I went to Mayo Clinic where she thought I had cushings from an external source ( September ) she told me to just wait and everything would go back to normal. Even though there was no outside steroid source.
Then I wasn’t getting better in the end of October I went to two doctors in nyc, who didn’t do anything.
Finally I found an artical on cyclical cushings and sent it to my doctor at Mayo Clinic. She agreed with me and told me to come in. My cortisol was finally high now and she’s running other tests I hope I’m fixed soon.
I’m so sad and depressed.
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