Home

Voices from the Past: Moxie G, MoxieGarrett, Pituitary Bio

December 1, 2025

MaryO Diabetes, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , 1 Comment

 

August 1, 2017:

It’s been 3 months since my surgery. I’m still trying to piece my story together.

I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months. I was ashamed of my inability to have a healthy pregnancy and nurse my baby. I tucked it away.

Normally a very thin and “bounce back” kinda person (5″8/130lbs), I was unable to entirely lose my baby weight and then noticed a gradual weight gain. My wedding rings no longer fit and when I went to get them resized, I was told my finger had changed by 2.5 sizes. I was embarrassed. I took them off.

My once angular face became puffy & round. I developed acne on my back and arms. Nothing healed. I started noticing dark facial and body hair on my blonde body. Normally a pink person, I didn’t really notice when my skin turned red. Normally easy to bruise, my new ones didn’t alarm me. Having not escaped my pregnancies without some stretch marks, I didn’t think much about the excess ones I was sporting. Always complaining of feeling cold, I now felt like I was overheating and wanted to rip my clothes off. My cuticles cracked and bled and I chalked it up to winters in Canada. Two of my teeth broke and I figured they were just weak… it runs in the family. My newly prescribed glasses made everything look fuzzier… oh well, I’ve always had poor vision. I attributed my alarming hair loss to post-pregnancy normalcy. I figured the continuing lactation was just a left-over indignity. Pretty sexy stuff.

People asked me on a regular basis when I was due. My abdomen was completely rounded, my breasts were huge, but I still had comically thin limbs. It felt like my body was open to judgement and commentary. I was ashamed of my new appearance. I made light of it.

I stopped attending social functions because I hated the way I looked. I couldn’t bear going through the process of trying to find something flattering to wear and then having to field questions about my uncharacteristic weight gain. I felt like I always had to explain myself. It was humiliating. I withdrew.

I had a pathological, insatiable thirst. Normally not a large beverage consumer, I was pounding can after can of whatever I could get my hands on. I planned every excursion around knowing where there were restrooms and where I could buy my next beverage. My sleep was interrupted hourly. It became a joke among my family & friends. I limited where I would go and who I would be around.

I oscillated between having super-human energy (16-18 hour self-imposed workdays) to being so bone-weary that I would fall asleep sitting up at my computer, mouse still in hand. When my symptoms began, I was working in senior positions in advertising agencies. It was a demanding & high-paced lifestyle. Also during this time, I left my career to open my own business. In the 5 years I was sick, I launched a successful childrens’ retail store. I assumed my exhaustion was a natural by-product of my workaholism. All working moms are this tired, right?

I couldn’t understand… I was functioning at a high level… 4 happy kids, a great marriage, a clean house, a successful business, I was even freelancing as a strategist on the side. Why didn’t I feel like myself? What was going on with my body? I surely couldn’t be ill. I was doing just fine. Look. See? I should just try harder.

I often said to my GP that I thought my hormones were outta whack. Nothing was severe enough to warrant a doctor’s visit or alarm. Everything was manageable but there were so many small, strange things happening that I was sure something was off. Eventually, she ordered blood tests. I carried the requisition around for almost a year. I thought I was overacting and wasting people’s time. In June 2016, I had a severe sinus infection and went to my doctor. Sheepishly, I promised to attend to the blood work I had been avoiding.

A week later, my doctor’s office called and told me to walk myself to the hospital emergency room. My sugars were 34 (Normal is 4-6, Coma is 16+). I didn’t know what this meant but was assured it was severe. I called my husband and we went out for dinner. I sent him and my daughter home and walked to the hospital.

I started to get an idea of how serious it was when the hospital staff rushed me in and started giving me insulin shots. No-one could understand why my sugars were so high and how my body was tolerating it without shutting down into a coma. They tried unsuccessfully for 24 hours to bring my sugars down to acceptable levels. With no history of family or gestational Diabetes, I was diagnosed with Type 2.

Dealing with this diagnosis was hard. It was my belief that only fat, lazy people with horrible lifestyles developed this disease. I went home and had to learn how to live like a Diabetic. I cut sugar completely out of my diet. We had to relearn how to grocery shop and cook. I had to start reading and understanding food labels. My husband made me disgusting quinoa muffins. Being a Diabetic became a full-time hobby. And the medications wreaked havoc on my digestive system.

The road to finding out what was causing the resistant Diabetes was in full throttle. I met dozens of doctors, nurses, technicians, and specialists. I had CTs, MRIs, X-rays, diabetes management & dietician appointments, urine tests, blood tests, hormone tests, pre-op & pre-admitting appointments, visual tests, Neuro-opthamology appointments, ENT consults, Endrocrinology reviews… It was constant and exhausting. I developed a deep hatred for medical tape.
So, Diabetes symptoms led to a Cushings Disease diagnosis, which eventually led to a pituitary tumour diagnosis. I had a 9mm Adrenocorticotropic hormone (ACTH)-producing tumour. Surgery was booked. Jokes were made. All of a sudden, I needed everything about as much as I needed a hole in the head (They really did drill a hole in my skull. It’s held back together with glue!). But being diagnosed with a brain tumour was a relief. Something beyond my control was responsible for my current condition. I didn’t do this to myself because I was incompetent, lazy, or deserving. This was done to me and now we could try to fix it.

My surgery was booked at St. Michael’s Hospital with Dr. Cusimano here in Toronto for April 21. Due to a hospital error, my surgery was cancelled at the last minute and re-booked for May 1. After my family travelling here to be with me, getting my house in order, making arrangements for my store, childcare, packing my bags, saying cryptic goodbyes to my loved ones just in case, and even shaving my legs, I was crushed. I had mentally prepared and now I had to wait another 9 days and do it all over again.

Getting prepped for surgery was terrifying. I was in surgery for just over 3 hours and in intensive care for 3 days. I slept a lot during my immediate recovery. I had a bout of Diabetes Insipidus. But the good news? My cortisol crashed immediately. This assured everyone that the tumour was gone. The bad news? I felt like absolute garbage. My mom, my husband, my brother, and my best friend were there with me. I let them take care of me. I let them take care of everything.
Surgical recovery is manageable. Getting the stitches & stints removed from my nose was absolutely horrible and I had what I thought was a panic attack directly after the procedure. It really scared me (I now know it was my adrenalin crashing. My surgery has left me with an adrenal insufficiency which means my body cannot handle any stress, illness or injury.). Scar tissue has formed around one of my nostrils. It is affectionately known as “Mini Nostril”. And I can tell you that not blowing your nose for 3 months is one of the most annoying things in the universe. I went back to work 8 days after surgery. I shouldn’t have, but I’m a show-off. Everybody that sees me is stunned at the transformation thus far. My skin is a normal colour and I have lost nearly 30 lbs. People that knew me before I got sick say, “Welcome Back”. People that didn’t know me previously ask me if I am ok or don’t even recognize me.

Chemical recovery is terrible. My sugars are behaving more normally and I’ve been able to discontinue one of my three medications. I started my hormone weaning a few weeks ago and it is so hard. My latest blood tests show that my body is still not producing it. Every muscle and joint aches. I barely eat anything. I have headaches. It takes me hours to fall asleep. I’m dizzy. I’m weak. I’m exhausted. I’m not sure my digestive system will ever be right. I’m so tired of complaining. This will be my reality for at least a year.

But, I am hopeful. I know that I will heal. And most of all, I am grateful… for the love of my friends & family, the health of my children, the healthcare system of my country, and the chance to reset my life. I put my wedding rings back on yesterday. They fit.

(And what of that fucking tumour? The hospital adopted him. I had to sign papers and everything. You’re welcome, science.)

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Amanda, Undiagnosed Bio

November 24, 2025

MaryO Golden Oldies, Pituitary, pseudotumor cerebri, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , Leave a comment

golden-oldie

 

I have been battling sickness for about a year and half now. It started with my gaining weight pretty rapidly (about 20 lbs. in a month-month and a half). I’ve never been super strict about my eating or exercising but I don’t eat a lot of junk food – don’t buy any chips, soda, cookies, etc.) I also do remain pretty active in the work that I do as an elementary teacher. I’ve never had a problem with my weight before and this particular summer I was teaching 3 sections of dance so I was getting plenty of exercise.  I told my family practioner about the weight gain and he told me that metabolism slows down as you age. Ok. I was 26 when he said this and my metabolism must have went down to 0 for me to gaine so fast! I decided to just be more concious of what I ate and did.

As the months went by, I went on a business trip to Boston. During this trip I was inrcedibly fatigued and felt awful. I thought perhaps I was coming down with something and was put on antibiotics that did nothing to help. In August of 2010 I began to have debilitating headaches. I could not get the headache to go away with any over the counter pain reliever and ended up going to a doctor who diagnosed me with migraines. I tried a few migraine medicines with no luck and had a CT scan that showed nothing abnormal. I was then referred to a neurologist.

I mentioned the weight gain to the neuroogist who thought it was odd that I would gain weight so rapidly, but he pretty much dismissed it as a symptom and said I was getting headaches from overuse of medication. I knew that could not be right, but thought I’d try just taking nothing for a while to see if it helped. It did not. The same neurologist then recommended physical therapy, which helped ease the pain but did not take away the headaches. His final thought was that I was depressed and put me on depression medication.

During this time I was working as a teacher and missing work quite often. I felt awful every day. I continued to gain weight, feel fatigued and weak, have mood swings and began developing stretch marks and acne. I always had wonderful skin and it seemed no matter what cleanser I used, I couldn’t control the breakouts.

I saw another neurologist that was recommended by a parent at my school. She scheduled me for an MRI and a lumbar puncture. My pressure came back a little high during the lumbar puncture and the MRI was fine so she diagnosed me with Pseudo Tumer Cerebri. I took medication for this condition, but ended up with no relief.

I ended up spending a week in the hospital because I couldn’t stand the pain in my head and I was so emotional over the whole experience of not having any answers. They pumped me full of pain medication and migraine drugs. At the end of the week when I still had no answers, I ended up going to see a neurologist that was a headache specialist.

The headache specialist diagnosed me with meningitis. No tests but I got a diagnosis based on my story. She put me on steriods. I began to feel better for a few days. I returned to work and thought I had finally found my answer. Then everything came to a screeching halt and I began to feel awful again. The headache specialist was still convinced it was meningitis and said I was just more susceptible to migraines from the meningitis. I again went through a whole gamot of migraine medications to no avail.

I ended up leaving my job and moving close to my family so I could have support and people to help care for me. I returned to my family doctor who decided to do some blood tests. After running the blood tests, my doctor said that my cortisol level was high and I might have cushings which would explain all my symptoms. I had never heard of Cushings so I began researching it. Once I read the symptoms and others’ stories of how they felt and what they went through I was so sure that here FINALLY was my answer. The doctor did a low dose dexamethasone test which came back with normal levels and it was decided I did not have Cushings.

I was devestated. Not that I wanted to have this illness, I just wanted an answer and thought for sure this was it! I even asked my doctor to retest me which she would not do.

I went to see another doctor. I began going through migraine medications again, acupunture, chiropractor, etc. to find some relief. I finally brought the idea of Cushings to this doctor. She ran some blood tests again. Everything came back with normal levels except my potassium was low. Even though my blood didn’t show it, I’m still convinced I have Cushings and my doctor agreed to send me to an endocrinologist.

I have an appointment on Monday with Dr. Findling in Menomenee Falls. I found him on this site as one of the ‘helpful doctors’. I’m hoping that he can finally diagnose me and I can get on the road to recovery.

I miss my life. I’ve lost friends due to this illness. My marriage is suffering. I cannot work. I basically have no life at all because I rarely feel well enough to do anything and no one understands. Not to mention the psychological toll being sick with no answers has on a person as well as watching my body change so much and not being able to do anything to control it! I want an answer and I want to finally know what I can do to help myself get better.

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

LisaG, Ectopic Cushing’s (Golden Oldie)

October 26, 2025

MaryO Ectopic, Golden Oldies, Lung Surgery, Recurrence, Treatments, Update , , , , , , , , , , , , Leave a comment

golden-oldie

 

Diagnosed April 1997 with Cushings. They figured it was about 9 years in coming to a head. Started with the weight gain then disc problems (surgery), problems with my teeth breaking, acne, facial hair all the good stuff. Kept changing my hair color as something just wasn’t right but eventually realized it was my skin color darkening.

Took a trip to NYC in Feb of 1987 and swelled up and turned yellow during the trip. Went to the Dr when I got back and they tested me for Hepititas (sp?) and AIDS. Dr asked me if I had been using steroids. Changed Dr’s due to a change in my health insurance.

I talked to her for about 10 minutes about all my symptoms and she said “You have Cushings”. She sent me to an endo at Portland Diabetes Clinic. He got me in to see Dr Cook up at OHSU (Oregon Health Science Univ) and he scheduled the Petrus Sinus Sampling. From that they determined it was an Eptopic tumor.

They started doing Catscans and MRI’s until they found a small lung tumor. I finally had surgery in Sept 1987. The months leading up to that surgery were pretty scary. I ended up being pretty heavily medicated by the psychiatrist I started seeing. I think for me the mental and emotional symptoms were as bad or worse then the physical symptoms.

I’d like to say that’s where this ended but…alas. I started experiencing the same symptoms again and went to the Dr again in April of 2005 and was again diagnosed with Cushings. I am back with Dr Cook and am awaiting the results of the second Petrus Sinus Sampling.

Update October 26, 2006

2nd Sinus Sampling again was negative so again have an Eptopic tumor. After about 4 months gave up looking and decided on a BLA. Since my surgery in Sept 2005 until today Oct 2006 I have lost 60 pounds and my Cushing look is starting to fade. I take my medication without fail and have stayed with my new healthy lifestyle. Still looking for my eptopic tumor, it hasn’t decided to be found yet.

To all those not yet diagnosed or “cured”, Hang in there. If you aren’t happy with your doctor, find a different one. Also, don’t wait for someone else to tell you about your disease. Research!! Hope my next update will be for my tumor removal.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | CushieWiki

Don S (Don S), Undiagnosed Bio

October 22, 2025

MaryO Familial Cushing's, Male, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

My name is Don.  I am 35and I am a career firefighter with 14 years on the job.

10 years ago I was injured badly at a fire and almost immediately noticed a change.  My skin began peeling off and I began gaining weight.

I knew about cortisol and its effect on the body because my mother passed away from Cushings at 46 after years of taking steroids for respiratory problems.  My doctors dismissed my issues as stress following the trauma.  My accident happened in March and by July, I had gained  80lbs.  I was constantly fatigued and developed acne all over my body.

A year or so later, I began having stomach issues.  Nausea and Reflux were with me everyday.   I continued to have high serum cortisol throughout the past 10 years but each time, it suppressed to just below the 1.8 threshold with dexamethasone so my doctors just dismissed it as stress.

In 2012, the dizziness and blurry vision began.  My spine is weak and my joints hurt constantly.  My legs are so skinny and weak, they shake when I stand and my heart races from any exertion.  I managed to continue working until a year ago when I accepted that I was putting myself and others at risk.

For the past year I have been paying guys to work for me in order to keep my job and insurance.  I worked hard for this career and promotions and I will not give it up without a diagnosis and confirmation that I can no longer do the job.

I have a new Endo now and she ordered a Urinary Cortisol.  It came back 4X higher than the upper limit.  She is convinced I have Cushings and it isnt just stress.  I have the following symptoms.  Weight gain of over 100lbs, Long purple stretch marks on my flank, side, and groin, Blurry vision, tachycardia, weak limbs, tremors, anxiety, puffy face, dizziness, stomach issues.

I am hoping after 10years of suffering, I may finally have my answer and that I can begin getting my life back.  I have a wife and 3 year old that really count on me and all I have been doing is letting them down.  Our lives are on hold because we do not know what the future will bring.

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Kim H, Ectopic Bio

October 16, 2025

MaryO Adrenal Surgery, Carcinoid, Ectopic, Golden Oldies, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , 2 Comments

golden-oldie

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.

However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Medical Mysteries: Were Wedding Jitters Making Her Sick?

October 13, 2025

MaryO Cancer, Ectopic, Lung Surgery, Lung Tumor, Treatments , , , , , , , , Leave a comment

Bridget Houser felt despairing. In the months before her 2018 wedding, Houser, who had never struggled with her weight, noticed that it inexplicably began to creep up. In response she doubled the length of her runs to eight miles, took back-to-back high intensity workout classes and often consumed only water, coffee and fruit during the day before a spartan, mostly vegetable, dinner.

Yet no matter what Houser did, her weight stubbornly increased and her oval face grew round, a transformation that was glaringly obvious in comparison with her identical twin sister.

Houser wondered whether the five pounds she gained despite her herculean effort was a corollary of other problems. For the previous two years she had battled a string of maladies: first daily headaches, then crippling anxiety, followed by insomnia, hair loss and acne, something she’d never endured as a teenager.

“Stress was the universal explanation,” recalled Houser, a controller for a small business in Chicago. When doctors suggested that her upcoming marriage might be a cause of her problems, Houser considered, then rejected, the theory. It just didn’t jibe with her feelings.

In early 2019, about six months after her wedding, Houser insisted that her doctors perform several tests. They ultimately revealed that her symptoms weren’t the result of stress or marital misgivings but of a serious illness that had been smoldering for years.

After successful treatment followed by a long recovery Houser, now 34, feels far better than she did during those miserable years in her late 20s.

“I wish I’d been nicer to myself and not blamed myself for what was going on,” she said.

Getting through the wedding

In 2016 Houser began experiencing daily pain in the back of her head, a common spot for tension headaches. When the headaches failed to improve with dietary changes or nonprescription pain relievers, she consulted her primary care doctor, followed by a neurologist who told her she had migraines.

Houser, then 27, noticed that 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. She decided Lasik surgery might help and in October 2017 underwent the procedure, which uses a laser to reshape the cornea, reducing or eliminating dependence on contacts or glasses.

Her vision improved and the pain disappeared — briefly. A week after eye surgery, her headaches returned. “I wasn’t overly concerned,” Houser said. “I know a lot of people have headaches.”

A few months later for no apparent reason Houser developed “really bad anxiety. It wasn’t just like I was anxious,” she recalled. “I couldn’t function. I’m Type A so I knew what anxiety is, but not to this degree.”

One weekday morning in early 2018 she felt so overwhelmed that she took a sick day, then called her twin, Molly, and their mother and told them she needed help immediately.

They managed to schedule a same-day appointment with a psychiatrist whom Houser began seeing regularly, along with a therapist. The psychiatrist zeroed in on her impending wedding and told Houser that the event can cause “huge anxiety.” She began taking an antidepressant along with Ativan, an anti-anxiety drug she used when things got really bad. She also ramped up her yoga practice, hoping it might calm her.

Houser vividly remembers riding the escalator to her office one morning “and in my head I kept saying, ‘I’m in trouble, I’m in trouble,’” although she didn’t know what was wrong.

Her changing appearance had become a source of great unhappiness. Although her weight remained in the normal range, Houser couldn’t figure out why she was gaining weight after drastically slashing her food intake and dramatically ramping up exercise. Her normally thick hair had thinned so noticeably that her hairdresser gently advised her to consult a doctor.

Houser’s psychiatrist thought her hair loss might be caused by her antidepressant and switched medications. That didn’t seem to help.

Houser was particularly bothered by her newly chubby face. “It was like a joke in my family,” she said, adding that she was teased about being overly sensitive.

Even her wedding day was colored by unhappiness about her appearance and the intense amorphous anxiety that seemed omnipresent.

“Rather than think about how excited I was,” Houser recalled, “it was ‘How can I get through this day?’”

Normal thyroid

After her wedding Houser felt worse. She developed severe insomnia, night sweats and acne. In February 2019 a nurse practitioner in her primary care practice ordered tests of her thyroid, which were normal. When Houser pressed for additional testing, she was referred to an endocrinologist. He told her she was stressed.

Dissatisfied, she saw a second endocrinologist who agreed with the first. “She said ‘I don’t think there’s anything wrong with you’” metabolically, Houser recalled. The second endocrinologist’s nurse even revisited the marriage question in the presence of Houser’s husband, Doug, who had accompanied her to the appointment. “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.”

Months earlier, the nurse practitioner who ordered the thyroid tests briefly mentioned measuring levels of cortisol, a hormone involved in the body’s response to stress and other functions. Elevated levels of cortisol can indicate Cushing’s syndrome, an uncommon hormonal disorder that occurs when the body produces too much of the hormone over a prolonged period.

“She had thrown cortisol testing out there and I think it was always in the back of my mind,” Houser said.

She asked the second endocrinologist to order cortisol tests. The doctor agreed, but not before telling Houser that she didn’t think she had Cushing’s because she lacked the classic symptoms: major weight gain, purple stretch marks and a fatty hump between the shoulders. Houser did have the “moon face” characteristic of Cushing’s that is also seen in people who take high doses of steroids for long periods to treat various illnesses — but Houser wasn’t taking steroids. Insomnia, headaches, acne and anxiety can be symptoms of Cushing’s.

There are several forms of Cushing’s syndrome, which typically results from a tumor — usually benign but sometimes cancerous — in the pituitary or adrenal gland that pumps out excess cortisol. Sometimes tumors develop elsewhere in the body such as the lungs or pancreas. Cushing’s affects roughly five times as many women as men and typically occurs between the ages of 30 and 50. If left untreated, it can be fatal.

A trio of tests measuring cortisol levels in Houser’s blood, urine and saliva were significantly elevated; the amount in her urine was eight times higher than normal. The formerly skeptical Chicago endocrinologist told Houser she had Cushing’s and referred her to James Findling, a Milwaukee endocrinologist who is internationally recognized for his treatment of the disease.

“I was just so happy to have a diagnosis,” Houser recalled.

Revealing photos

Findling asked Houser to bring photographs taken several years earlier to her October 2018 appointment. It is a request he makes of patients as a way of spotting telltale physical manifestations. In Houser’s case, the facial change was particularly striking because she is an identical twin.

Findling noted that delayed diagnosis is typical, because physical changes and other symptoms tend to occur gradually and insidiously. Houser, he added, “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.”

The next step was determining the location of the tiny tumor. Tests found nothing in Houser’s pituitary or adrenal glands, and CT scans of her pelvis, chest and abdomen were clean. Findling ordered a dotatate PET scan, a highly sensitive CT scan that can find tumors that elude conventional imaging. The scan revealed a nodule in Houser’s left lung.

Houser sought a second opinion from a thoracic surgeon in Chicago. While Findling and a thoracic surgeon at Milwaukee’s Froedtert Hospital strongly recommended that she undergo surgery to remove the tumor, the Chicago doctor disagreed. He said he didn’t think the lung nodule was causing Cushing’s and recommended that Houser continue therapy and anti-anxiety medication.

“Do you know what it’s like to wake up from surgery and to not be better?” she remembers him asking her.

After deliberating with her husband and conferring with her Milwaukee doctors, Houser opted for surgery performed Oct. 30, which removed part of her left lung. A pathologist determined that the nodule was a rare, slow-growing neuroendocrine lung cancer known as a bronchial carcinoid, which can cause Cushing’s. The Stage 2 cancer had spread to a nearby lymph node.

“Fortunately I think we got it early,” Findling said. “She’s had a sustained remission and a cure of her Cushing’s.”

“The cancer didn’t rock my world,” said Houser, who had previously had a melanoma skin cancer removed. (Doctors have told her they don’t think the cancers are related.) “It was about not having Cushing’s anymore, which was more important.”

So why didn’t Houser’s doctors, among them endocrinologists, suspect Cushing’s?

Findling, who estimates he has treated as many as 2,000 people with the disease in his 40-year career, said that while doctors are taught that Cushing’s is rare, it’s not. He cites a 2016 study, which that found that 26 of 353 endocrinology patients were found to have the disease.

Textbook descriptions, which include the presence of purple stretch marks and a hump, are “almost a caricature,” Findling observed. “It’s pretty well recognized that Cushing’s is more subtle than that … and can cause neuropsychiatric and neurocognitive problems.”

Houser’s normal weight and the fact that she didn’t have high blood pressure or diabetes may have misled doctors.

“I think we’ve moved the needle a little bit, especially among endocrinologists,” he continued, 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.”

“When you make this diagnosis it can have fabulous outcomes,” he added, citing Houser’s case. “That’s why I’m still doing this at my age.”

Houser considers Findling to be her “literal lifesaver.” She spent the next year seeing him as she was slowly weaned off medications to normalize her hormone levels and recover her strength.

She is monitored for Cushing’s annually, remains cancer-free and, other than residual fatigue, feels well. In October 2021 she gave birth to a daughter. Her son was born eight weeks ago.

Houser regards the help provided by her family, particularly her husband whom she called “my biggest supporter,” as essential. That seems especially ironic because stress about their marriage had been blamed for symptoms that were actually caused by a cancer.

“He was a huge help in calling doctors and making the necessary appointments when I didn’t have the energy to fight anymore.” His unwavering love, she said, was “a testament to our strong marriage.”

From https://www.washingtonpost.com/wellness/2023/10/07/weight-anxiety-wedding-medical-mysteries/

Katelyn, Pituitary Bio (News article)

October 10, 2025

MaryO Interview, News Items, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , Leave a comment

WHEN Katelyn Bonacasa’s face got “red and burning hot” and became a “complete circle”, it was dismissed by doctors as “adult acne” and “postpartum changes”.

After being repeatedly fobbed off for months on end, she decided to do her own research – and was able to get to the bottom of what was really going on.

The first symptoms Katelyn, then 29, noticed was red, bumpy irritation across her chest.

A dermatologist said it had been hormonally triggered and gave her a wash and cream, which cleared it up.

But soon after that her face started to change.

She said: “Moon face was the first major symptom I noticed.

“My face lost all shape and became a complete circle. On top of that, it was red and burning hot all the time.”

Within weeks her hair began falling out and she lost nearly a third of it, while new hair sprouted across her face, from forehead to chin.

Acne erupted across her skin, her body bruised easily, and even the smallest cuts would take months to heal.

“I was literally unrecognisable to myself,” Katelyn admitted.

“I gained 30lbs so quickly, I couldn’t keep my eyes open from fatigue, but I also couldn’t sleep.

“I was depressed, anxious, angry, and constantly on edge. I felt like I was losing my mind.”

Her periods stopped, her thyroid became enlarged, and blood work showed her body wasn’t responding as it should to insulin.

Katelyn recalled: “The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day.”

Yet for eight long months, doctors dismissed her insisting symptoms were “postpartum changes” or “normal for women”.

“I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine’,” Katelyn claimed.

“He told me it was probably just postpartum. He ordered the most basic thyroid test, nothing comprehensive, and wrote in his notes that he had ‘no suspicion of anything’.”

Another doctor brushed her skin changes off as adult acne. An OB/GYN told her to try running on a treadmill.

“These things are normal as a woman,” one endocrinologist said flatly.

So Katelyn, from Long Island, New York, began doing her own research.

“I realised the only thing I hadn’t been tested for was Cushing’s disease,” she said.

When repeated blood tests showed cortisol levels three or four times higher than normal, and a urine test came back at 720 when the normal range is 3 to 45, her suspicions were confirmed.

“From the very first time I had blood work done, I never once had a normal cortisol reading,” she said.

“That’s when I knew it had to be Cushing’s.”

Cushing’s disease is caused by having too much of the hormone cortisol in your body and can be caused by a small, non-cancerous growth in the pituitary gland.

Katelyn was sure she finally had an answer and found a neurosurgeon who specialised in pituitary and skull base tumours.

“I asked for a consultation before I even had the MRI, because I was so sure this was what I had and I was right,” she said.

When an MRI confirmed a 1.5cm tumour, she sent her labs and scans to his office. Within eight weeks of that first phone call, she was in surgery.

Katelyn says: “I was the one who connected the dots and pushed for the right tests.

“I trusted myself, and that’s what saved me.”

Now 30, Katelyn has detailed her symptoms and repeated dismissals by doctors on TikTok, reaching thousands of people.

“Since posting my videos, I’ve had hundreds of people messaging me with questions about my journey,” she said.

“It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything.

“A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise, with zero control over it.

“But this too shall pass. It gets better.”

From https://www.thesun.co.uk/health/36966323/moon-face-dismissed-adult-acne-cushings-disease/ – lots of pictures. And ads.

Shannon, Pituitary Bio

September 30, 2025

MaryO Golden Oldies, PCOS, Pituitary , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

A Golden Oldie

The pituitary gland

The pituitary gland

I’m 31 years old and feel like I’m 80.  I’ve been ill for so many different things over the past couple of years.

In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why.  I still have vision disturbances but after two med packs of steriods the double vision went away.

I came across this web site last week and connected with so many things from other people. I printed off the sheets and took them to a new neurologist I was scheduled to see.  To my amazement he completly agreed with me! He said it was very likely I did have cushings and/or PCOS.

He scheduled an appointment for a Endocrinologist that specializes in this area and I am to see them Tuesday. I will update from then but I want to say I’m grateful for this site because it gave me some hope of an answer. I’ve been so miserable. I felt like my soul was trapped by my body and I didn’t even have the energy to make it better.

If you’re doctor makes you feel crazy, find another one. I know even with insurance it’s expensive but help is imperative.

Here’s a list of my symptoms:

-hump on my neck (have had for a while and thought it was from bad posture!)
-cyctic acne
-hair loss
-hair growth where it should not be
-loss of libido (I’m 31 this is so not right)
-fatigue
-muscle weakness
-back pain
-fat in the middle
-moon face
-horrible stretch marks
-no period for over a year (my last gyno told me I was just lucky)
-vision disturbances
-depression
-anxiety
-hypertension
-extremly low cholesterol
-hard to breathe, like there’s somthing heavy on my chest
-reoccurent kidney stones
-cyst on ovaries
-frequent bathroom visits
-terrible constipation
-swelling of legs and feet
-water rentention

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Melissa C, Pituitary Bio

September 20, 2025

MaryO Golden Oldies, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , Leave a comment

A Golden Oldie

It started with severe skin acne on my back and arms. Then the bloating started. I went from one docter to the other. For months and months I was left undiagnosed. I gained so much weight, I went from a xs to a xl in a matter of 2 months.

My sugar levels was out of control and I could not concentrate on my studies. My hair started falling out and I got ugly stretch marks all over my hips and thighs.

I was finally diagnosed and had the tumar removed. Its a few weeks after surgery and I have started losing weight. I still feel ugly though, Im getting treated for low cortisol levels and I still have head aches.

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Andrea L, Pituitary Bio

September 3, 2025

MaryO BlogTalkRadio, Golden Oldies, PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

A Golden Oldie

I first noticed something abnormal about my health in the summer of 2009, at age 23. I suddenly developed severe acne when I had had clear skin since I was a teenager, and I noticed more hair on my face and body than I was used to. In retrospect I realize that I’d also had bouts of weight gain, a buffalo hump and excessive sweating during my adolescent years, but I didn’t think anything of it at the time.

Around the same time I noticed the acne and hair growth, I also started putting on weight. I’d been on the thicker side for my height since childhood, so I decided to join Weight Watchers. Even though I was hungry a lot of the time, I stuck to the plan religiously and lost about a half pound per week. It was slow, but I was moving in the right direction so I stuck with it. I had bouts of fatigue throughout the process, but I would just assume that I needed to tinker with my diet – more protein, less protein, more fruit, less fruit, whatever. I tried a lot of different things, always focusing on getting adequate nutrition, but never had the energy that my Weight Watchers buddies seemed to have.

About six months later I finally went to my mom’s endocrinologist when I was visiting my parents in Texas. I was concerned that the acne and hair growth meant I had PCOS. All those tests came back normal, so the doctor gave me a 24 hour UFC just in case. It came back elevated, and she said I ought to follow up with an endocrinologist in New York where I live.

My next menstrual period didn’t come until 4 months later, and then they stopped completely.

My new endocrinologist in New York ordered more tests (you all know the drill). Over the next six months or so the 24 hour UFCs kept coming back high, salivary cortisols were normal or high, and one dexamethasone suppression test was kind of ambiguous. The doctor said that my urine volume was really high and might be screwing up the results, so I retested after limiting my fluid intake. That UFC came back normal, so I was instructed to follow up in six months.

As if on cue, the months following my normal UFC were great. For some reason I finally felt like I was bursting with energy. Beyond that, I had lost weight and even landed my dream job. At the time I assumed that the energy was from finally finding the right balance in my diet. The acne and hair growth were still there, but as far as I was concerned it was nothing that couldn’t be solved with some tweezers and makeup. Later I noticed in photos that even though I had lost weight, my face was much rounder than it had been before.

The nightmare began in January of 2011. I started feeling more anxious than usual. I began to cut more and more things out of my schedule because I didn’t feel like I had the mental energy to handle my normal workload. I had to take a Benadryl most nights to sleep. I started suffering from regular constipation for the first time in my life. My appetite increased markedly; I kept feeling less and less satisfied with my normal diet. I gave in and started rapidly gaining weight again.

After a particularly stressful week in February, I asked my mother to stay with me in New York for a little while, admitting that I had been feeling out of sorts. I figured I’d take a week off from work and just do fun stuff and I would be right back to normal.

…Wrong.

The bouts of fatigue returned, this time so crushing that I didn’t even have the energy to make my own meals. I’ll never forget the day I attempted to go out for my morning jog, trying to convince myself that it was all “in my head,” and despite having plenty of cardiovascular and muscular strength, I could barely take a single step. I felt like the world had gotten bigger somehow, like I drank the shrinking potion from Alice in Wonderland.

At the same time, my appetite became so ravenous that I felt like I could gnaw my arm off 24/7. I also started feeling scatterbrained and having difficulty focusing. These were the beginnings of the cognitive symptoms that would prove to be the most debilitating of all.

My mother, god bless her eternally, suggested that the odd change in my mental state might have something to do with all those abnormal hormone levels from the prior year’s tests. I followed up with the endocrinologist again and had a very high 24 hour UFC. He ordered an MRI. My symptoms were getting worse, but my mom fatefully broke her foot and had to return to her home in Texas.

By the time March arrived I was so scatterbrained that I constantly felt drunk. Going to work was petrifying. My appetite was still insatiable.

Finally, the mood swings came. By “mood swings,” I don’t mean irritability. I mean that I became an ultra-ultra-rapidly cycling manic depressive. I would wake up at 3:30 in the morning giddy with energy, writing long, rambling e-mails to everyone I know, trying to go for a jog only to have to stop and dance to the music on my MP3 player in the middle of the Bronx. Then I would feel horrendously depressed mere hours later.

I could spend a lifetime attempting to describe the pain of bipolar depression. It is beyond despair. Take the icky feeling you might get with a cold or a flu and multiply it by a thousand. I was so distressed I felt like my brain was on fire. Like I had been poisoned. It would get so bad that I couldn’t speak. I vomited just from the discomfort. Once I went to the ER, desperate for relief. All my vitals were normal. They just let me ride it out, like I was having a bad drug trip. Later, I described these feelings to my roommate, who said she felt that exact feeling while going through narcotics withdrawal.

One of the most interesting aspects of this experience was that every time I got a migraine headache (which I’ve had periodically for most of my life), my depression would lift or I would get more manic. Note that if I had a choice, I would take a migraine every day of my life over the pain of severe depression.

I went to a psychiatrist, and much to my dismay, he told me I was not crazy. He gave me totally ineffective herbal mood-lifters and told me to go back to the endocrinologist. I started taking huge doses of caffeine in an attempt to take the edge off the low moods. It worked temporarily, but the feeling always returned. I ended up back in the ER after experiencing a lovely phenomenon called “sleep paralysis” (Google it) for two hours straight, which understandably gave me a panic attack. I was put on benzodiazepines, which prevented another panic attack but did nothing to make me more comfortable.

Some interminable time later, my endocrinologist called to inform me that I had a 5mm adenoma on my pituitary gland. I wept with relief and my family made immediate arrangements to take me to MD Anderson for surgery.

Maybe if I had read some of the bios on this site I would have anticipated what was to come. Cushing’s patients never have it that easy. In my scatter-brained, benzo-doped, manic-depressive stupor, I showed up at MD Anderson for…more tests. There, both a 24 hour UFC and dex/CRH test came back normal. A few things about the dex/CRH test were not administered as planned, but the in-house testing results combined with my still-normal bodyweight convinced MD Anderson that I did not have Cushing’s, and was simply a total nut case. They sent me on my way.

Finally I returned to my mom’s endocrinologist, the same woman who had had the foresight to give me my first 24 hour UFC. She ordered another round of tests and sent me to a wonderful psychiatrist who promised to do her best to make me feel better while we waited for a diagnosis. A litany of psychiatric medicines (mood stabilizers, sleeping pills, stimulants, antidepressants) would each work for a few days or a week and then wear off. Eventually the mood swings turned into a persistent, mind-numbing depression.

In retrospect, the benefit of having my mood fluctuate so violently earlier in my illness was that the depression didn’t have time to take hold of my thoughts. It was painful, yes, but I was able to fight the feelings of hopelessness and self-hatred with logic and positive self-talk. Later on I was not only completely miserable, but also came to believe that my misery would never end. I’m amazed I lived to tell the tale.

By midsummer I had a few more elevated 24 hour UFCs under my belt and had gained enough weight to look more “cushingoid.” This time I went to Methodist Hospital in Houston. The surgeon there agreed with my endocrinologists that I had pituitary Cushing’s, but disagreed that my MRI showed a defined adenoma. Again, Cushing’s patients never have it that easy. Luckily this surgeon was caring and proactive enough to order an IPSS and schedule me for surgery, though he warned me that it may not cure my depression. I asked for the surgeon to remove my entire pituitary gland in the event that he didn’t find a tumor.

August 23rd, 2011 was the day of my rebirth. I can attribute my euphoria in the week after the surgery to the strong pain meds I was on for the CSF drain, but by the time they were out of my system I was astounded to find that my mood and thinking were absolutely 100% normal. I can once again think, laugh, smile, sleep, taste, and enjoy the company of others. Within three weeks I had enough mental energy to resume working from home.

No tumor was found, so my entire gland was removed. No amount of hormone replacement in my future can dampen the joy of having my self back, permanently, with no fear of relapse. I’m not even fully recovered from surgery and I’m feeling better than I have in quite a long time. Even the constipation and acne are gone!

It’s disorienting and traumatic to have essentially lived with a temporary form of bipolar disorder, only to be cured of it as suddenly as it began. I fancied myself knowledgeable about mental illness before this, but I know now that you just do not fully understand it until you feel it first-hand. Luckily it all feels like a distant memory now. There must be a natural sort of psychological distancing that occurs with a traumatic experience like that.

As I posted on the forums shortly after my surgery, for those of you who may have given up hope, keep fighting! Take it from me that there are better times ahead.

Note: Email Andrea or add comments to this bio below.

Andrea was interviewed on the BlogTalkRadio Cushing’s Program on Wednesday, October 19, 2011

Listen live at http://www.blogtalkradio.com/cushingshelp/2011/10/19/andrea-l-pituitary-success-story

This interview is archived at http://www.blogtalkradio.com/CushingsHelp and iTunes podcasts at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Older Entries