May 19, 2026
MaryO
Adrenal
adrenal gland, bladder, Blood pressure, California, Chiropractor, Conditions and Diseases, cortisol, CT scan, cushing, Cushing Syndrome, dexamethasone suppression test, emotional symptoms, Health, hip surgery, irregular periods, moonface, nodule, Northern California, ORIF, Orthopedics, pain, pulmonary embolism, thin skin, thyroid, UFC, urinalysis, weight, X-rays
Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome. I am married with two children ages 10 and 4. My husband is an active duty Marine and I am a former Marine.
I’ve always been healthy up until now. I had pretty much a yawn worthy medical history and I wish I still did. I guess it started two years ago when I started having to use the bathroom frequently at night. I did go to the doctor and they just told me to quit drinking before bedtime. I chalked it up to having children and maybe just a weak bladder. I wasn’t thinking rare disease.
Then I noticed that I started to gain weight and my close weren’t fitting right at all. I chalked that up to sitting at my desk job all day and not getting enough exercise. I did go to the doctor to have my thyroid tested and it came back normal. So once again I am thinking it is me and I just need to exercise more.
My husband received orders to California and we moved here in July of 2012. By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress. Determined to get back in shape I start exercising everyday at 630 in the morning. Normally I am not a morning person by any means but since we moved here I find it hard to sleep. I worked out for three months following an exercise regiment but the weight stayed on. My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well. I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad. I had them test my thyroid again, it was normal.
Once again determined to beat the weight I started walking vigourously and watching my calorie intake. I noticed that I would have tingling in my toes at times and that my calves seemed weak. I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going. My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels. I knew something was wrong but I couldn’t put my finger on it.
I started to do my research on the internet and that is when I discovered Cushing’s. But I thought it is so rare I can’t have this. I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.
In March I went back to the doctor and told them to test my cortisol levels. My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California. By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.
The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done. The x-rays did not show anything so they sent me on my way with crutches. By the 4th day of vacay I stayed in bed resting because I really couldn’t walk. I got up to use the restroom and I had the crutches and fell backwards. I ended up fracturing my hip. I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.
They had a really hard time keeping my blood pressure under control during my hospital stay. While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23. Well upon our arrival back home I was referred to Orthopedics because of my hip.
Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo). I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.
Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland. I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.
Is there any good news out there? I really hope so, I just want to be healthy and enjoy life again!
May 14, 2026
MaryO
Undiagnosed
abscess, anger, Blood pressure, blurry vision, brain lesions, Buffalo hump, cholesterol, Conditions and Diseases, cushing's, cushing's syndrome, depression, fatty liver disease, hair loss, headache, Health, infections, memory, mood swings, moonface, Multiple sclerosis, pain, pre-eclampsia, pregnancy, sleeping problems, sports, Stretch marks, striae, surgery, sweat, swelling, Symptom, UFC, urine, weight
Hi my name is Kristi and I’m seeking any help or advice on Cushings.
I had always been active growing up into sports, running, weight lifting and horseback riding.
27 Yrs ago I gave birth to a beautiful healthy daughter. I was a size 10 and had only gained 25 LBS during prignancy. Less then a year later I was carrying my second daughter. I had no appetite and could barely eat but was gaining 10 pds every other day. My blood pressure soared and I was diagnosed with pre-eclampsia. I have been sick ever since I gave birth.
In the past 20yrs I have put on over 150 lbs and I can’t get it off. I was told I had a fatty liver and my cholesterol and triglicerites are off the chart. I began having memory trouble even forgetting my daughters name, hair loss, blurred vision (even typing this is slow going so forgive any mistakes) I started falling, loosing bladder and bowel control, walk into walls, tables and door frames/ I’ve had bouts of blndness and layered viion (Multiple Sclerosis has been ruled out) chronic body and nerve pain, horrible mood swings from happy, depressed, anger, intolerance (it’s like a daily rollar coaster ride) SEVERE salt cravings, low body temp, heaviness in legs, bruising, infections, trouble healing, brain lesions., trouble sleeping. Get cyst on my breast, head, ears and pubic area. Have little hard bumps on pubic area that never go away. No sex drive left for husband and even when we are active it’s very painful.. Major swelling in face, neck, legs and feet, backaches, headaches. When I stand up I feel like I get a head rush or lightheaded and I flap my arms to stay up or I fall back into bed or chair. I sweat even in winter. I do have the buffalo hump, the stretch marks, the moon face, brain lesions and the discolored skin under breast, behind neck and arm pits.
Dec. 6th I had a carbuncle which had develped staff and mrsa removed from my armpit. My whole armpit had to be removed and a couple weeks later I developed an abcess and had to go back to surgery. It has been 5 months and I still can’t heal. Have been packing the wound every day and seeing the surgeon every 2 wks. Now I have a carbuncle on the other side and I’m facing more painful surgery after this side heals.
Today I recieved a call that the urine test I took for cushings came back with normal levels. Needless to say I sat down and sobbed. I am 46 yrs old and I have been sick for half my life. I have seen so may doctors, been through so many surgeries and painful testings. I have been told over and over that there is something wrong but the Doctors can’t find it. I thought cushings was the answer and that I could finally get treatment and get better. I look in the mirror and I don’t recogize this person I see….How will I start over again on this long search for answers? Where will I get the strength?
May 7, 2026
MaryO
In Memory, Male, Pituitary
Blood pressure, Cushing's disease, heart attack, hypertension, pituitary tumor, Primary Aldosteronism
Greg died of a presumed heart attack at the age of 55.
September 19, 2015 he said “I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I’ll have to consult my doc and see if this (Primary aldosteronism) may also be an issue.”
He wrote this about a year ago: On your daughter’s wedding day, you wouldn’t go down to the swap meet to pick out some second hand, ill-fitting dress, would you?
You would not.
If you were a baseball team manager getting ready for the World Series, you would not make a call down to your minor league affiliate and ask them to send up their 3rd best pitcher for the 7th game, would you?
You would not.
If you were being audited by the IRS, you would not go to the local high school and ask for assistance from the remedial accounting class, would you?
You would not.
And so, why would you not insist on, in fact demand, the very finest MRI equipment for your pit scan? A false negative is an invitation for massive bills down the road (for the blue pencil people in your insurance carrier’s claims dept.) and years of misery for you, the patient.
And you would not settle for a myopic tailor for that dress, would you?
You would not.
So, make sure your pit scan is done under the proper protocol, and looked at by an experienced hand. Without that, your time in the machine may be wasted.
You deserve the best. This disease will try to do it’s worst. Don’t let it, and don’t let your case be the one that falls in the cracks in the machine, or the system.
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May 5, 2026
MaryO
Adrenal, Diabetes, Pituitary
Adrenal tumor, Blood pressure, Conditions and Diseases, cushing's, cushing's syndrome, energy, Health, hypertension, mood swings, Pituitary adenoma, poor quality of life, weight
I’m married to my best friend who’s health has steadily declined for around 15 years. High Blood Pressure, Diabetes, weigt gain, mood change are part of the decline.
He had a pituitary tumor removed in May 2012 after a diagnosis of Cushings. We know that he still has an adrenal tumor that the endocrinologist thinks was fed by the pituitary tumor.
My husband, my best friend, thinks they have ruined him forever. He feels worse than ever before. The doctors say it may take up to a year, that this has been coming on for a long time. His blood pressure is now controlled and he has gone from 12 blood pressure pills a day down to 2 1/2 pills per day. Other that that, he has a poor quality of life with no energy, no happiness.
I wish I knew more and could help and support him better. I am the fixer in our life, our family, our business that we have worked in together for 10 years and I’m so sad for him.
April 25, 2026
MaryO
Adrenal, Hashimoto's, Other Diagnosis, Thyroid, Undiagnosed
24-hour urinary free cortisol, adrenal adenoma, Blood pressure, bruising, cardiologist, cholesterol, cortisol, Dr. Theodore Friedman, endocrinologist, fatigue, flank pain, flushing skin, food intolerance, glucose, Glucose Tolerance Test, groin, Hashimoto's, hip, kidney stones, low grade fever, low oxygen, muscle weakness, nephrologist, osteopenia, pain, pallor, pre-diabetes, Primary Care, stomach, surgery, tachycardia, thyroid, tired, tremor, urologist
Hi, My name is Diana. I have been sick for over two years now.
I have had kidney stones for the last 2 1/2 years, constantly passing them and have had three surgeries related to that.I still have seven stones left in both kidneys total. I didn’t feel well after the second surgery, and never recovered from the third which was last August. I have been to 3 urologists, thinking it was a urological problem. They all told me it was not connected to my stone problem.
I have been to two nephrologists and two endocrinologists and a cardiologist along with my Primary Care. The second nephrologist told me he knew what my problem was, Cushing’s Syndrome. That was when I went to my second endocrinologist because my own endo wasn’t on the same page, however she did no further testing and at first told me she thought I was borderline cushing’s followed by a phone call telling me she didn’t think I had it.
I have an adrenal adenoma in my left adrenal gland.I am going to see Dr. Theodore Friedman next month.
Here are my symptoms:
Easily out of breath (don’t know what you call the meter the doctors use to measure your oxygen but my oxygen is low on that meter)
Recently diagnosed with pre diabetes with random high glucose readings but did not test positive for Diabetes with a Glucose Tolerance Test
Tachycardia (never had this before getting ill) that wakes me up in the middle of the night, this started after my third surgery
Extreme fatigue/ as tired when I get up as when I go to bed.
Muscle weakness with any exertion, especially going up stairs and most days just walking across the room
Pallor
low grade fever on and off
blood pressure that fluctuates between 97/67 to 136/84 was always low and has increased frequently
Rising cholesterol over the last couple of years with no change in diet
Right flank pain
Low back pain
Burning pain in upper buttocks and upper back thighs
Stomach and groin pain
Extreme hip pain
Shaky and fine tremor in hands and sometimes my head also shakes
Mildly elevated cortisol (24hr urine cortisol test)
Have been diagnosed with osteopenia in the past
Hashimoto’s
I break out with clammy/flushing skin sometimes during the day but mostly at night.
Cannot tolerate carbohydrates (not for many years) /have many food intolerances
Easy bruising
So, that’s pretty much it. Thank you for letting me join!
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March 19, 2026
MaryO
Interview, Undiagnosed
adrenaline, BlogTalkRadio, Blood pressure, bruises, Buffalo hump, carb intolerance, confusion, Dysautonomia, exercise, hyperpigmentation, interview, memory problems, POTS, reactive hypoglycemia, saliva, severe dehydration, stress, sweating, vision, weakness
Hello all,
I do not know where to begin. For many years I have been struggling with these symptoms. I have proximal weakness, intolerance to stress, blood pressure fluctuations, hyperpigmentation, reactive hypoglycemia, sweating, severe dehydration, very bad confusion, vision, memory problems, physical body changes (hump, bruises), carb intolerance, and inability to exercise.
My endocrinologist did a workup for Cushing’s disease and the midnight saliva test was high. She brushed it off as “stress”. I am seeing a doctor now that says I have POTS and Dysautonomia. My doctor says I have inappropriate adrenaline rushes.
My body is falling apart because I haven’t found a doctor who will take my symptoms and test results serious. I would like to talk to others who are having trouble getting diagnosed and also to those who have gotten diagnosed who have a good doctor.
God Bless and Thank You,
Deborah
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March 6, 2026
MaryO
Steroid-Induced
Blood pressure, Brain tumor, glucose, hump, steroids, wean
Have been experiencing symtoms since mid90s. Spent almost four years on high doses of steroids for brain tumor, snd diffilculty being weaned off.
Midsection has continued to grow,blood pressure and glucose levels have risen. Upper body muscle has all but disappeared, have the hump on back of neck. Developing facial hair, have lost upper body muscle
No answers till endocrinologist recently!
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February 28, 2026
MaryO
Golden Oldies, Hypothyroidism, Other Diagnosis, PCOS, Thyroid, Undiagnosed
Blood pressure, Golden Oldie, high cholesterol, hyperthyroidism, Mystery Diagnosis, PCOS, period, thyroid, undiagnosed, water retention, weight
I am 33 years old and at the age of 17 I had a sudden onset of weight gain during my senior year of high school. I was a size 8 and graduated wearing a size 18. My weight was mainly in my face and my stomach. My legs were small so my pants would be big in the leg but I needed a large waistline. I began taking birth control & thought it was a side effect from that.
I stopped having my period completely when I went to college & doctors said it was stress & I just needed to diet & excercise. I never ate alot and was a normal active teen. over the last 15 years I have been treated for blood pressure, water retention, high cholesterol and symptoms of PCOS.
In 2003 I was sent to an endocrinologist for suspected metabollic syndrome (syndrome X) that was ruled out & after an ultrasound of my thyroid I was told I had an enlarged thyroid & was treated for hypothyroidism. I quit my job & moved to another city to return to college loosing my health insurance & so I was back at the University health center. Blood tests showed my TSH levels & malehormone levels to be fine so they would not continue to treat me for the thyroid issue. Just cholesterol & sent me to a nutritionist.
After graduating & moving to GA, I went to see a new doctor and went through my history to be told the same, my levels are normal. Because my insurance does not require a referral & knowing I had a previous diagnosis of hypothyroidism I scheduled an appointment with an endocrinologist. My firstvisit wasn’t with him but with his PA in which I went over my long drawn out history. Blood work was done & upon seeing him on the second visit I was told the same, my levels are normal & I havehigh cholesterol so he treated me for that. It wasn’t until I stressed to him that I had been on cholesterol medication until the previous endocrinolgist did the ultrasound and took me off of it & said the thyroid medication would take care of it that he said he would send me for an ultrasound. The ultrasound revealed small nodules, that were not there in 2003, but he says are too smallto be concerned with & he will check them in 6 months to see if they have grown, other than that I’m fine. I know this is not the case. I watch what I eat, I excercise for 2 hours 5 to 6 days a week & cannot loose any weight. I am frustrated & am noticing increases bouts of depression where I can’t control my emotions one day & the next I’m fine. I am always exhausted, and after excercising I need a nap, I thought excercise was supposed to give you energy.
I was just about to give up & begin to reconcile that its just me & I’m crazy as the doctors want me to think until two weeks ago I saw an episode of TLC’s Mystery Diagnosis where this woman was basically telling my story of the sudden weight gain & other symptoms & how she basically self diagnosed herself with Cushing’s Syndrome & went to an endocrinologist who confirmed it & she had surgery to remove a tumor. When I heard this, I knew this had to be it, but am wondering why my endocrinologist never mentioned this disease or tested me for it. I really do not like his lack of concern and care so I called another office to schedule an appointment which I cannot get until September 1st.
After doing further research I decided I really want to see someone who is knowledgeable about Cushing’s so I found the Pituitary center at Emory University hospital in Atlanta. I called today for an appointment & was asked my diagnosis. I told her I don’t have one yet, I was seeking a consultation for a diagnosis of suspected Cushings. She asked who my doctor was and about MRI results. I told her I haven’t had an MRI and that my doctor never did a cortisol test or any urine tests just only non fasting blood work. She told me to have my labs sent to them & that they would review them & call me to schedule an appointment. I faxed both my regular doctor & my endocrinologist a request for my records to be sent to this lady’s attention. I am scared that my labs will not show anything to warrant an appointment & I don’t know where to go from here.
I don’t have the money or time I feel to continue to wait months for an appointment to get an accurate diagnosis.
Does anyone out there have any suggestions on what I should do?
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February 5, 2026
MaryO
Adrenal, Hypothyroidism, Other Diagnosis, Undiagnosed
24-hour urinary free cortisol, adrenal adenoma, Blood pressure, Carcinoid, hypothyroid, muscle weakness, pneumonia, Prednisone, Synthroid, tingling fingers, UFC, undiagnosed, weight
44 yo female
have been overweight for a while
always fatigue, muscle aches, pain/joint all I related to weight
only history is hypothyroid been on synthroid since 15ish
recently had UTI that was resistant to lots of abx then developed a bronchitis to pneumonia
then the UTI came back was on prednisone at start of pneumonia for 14 days then developed pain in left side and arm cardiac negative and high blood pressure out of blue
been worked up for carcinoid syndrome – neg
VMA and metanephrine – Neg
Lupus – neg
they have no idea why bp so high all of sudden i have palp with it
always notice muscle weakness I never have any strength
extremities tingle at times
but face has had horrible red butterfly redness dr doesn’t like
now wants me to be worked for cushing going to do 24 urine tomorrow
but i have had ct scans of abd and chest and one ct angio of chest showed a tiny tiny adenoma on left adrenal gland the radiologist said so small that they may not even comment on it
i do have the fat in neck/ shoulder/back
i just feel off not myself almost shaky inside i have no desire to do any activity although i know i need to
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January 22, 2026
MaryO
Diabetes, Ketoconazole, Male, Other Diagnosis, Pituitary, Treatments
Blood pressure, bruising, depression, diabetes type 2, Dr. Roberto Salvatori, IPSS, Johns Hopkins, Ketoconazole, libido, moonface, MRI, Pituitary adenoma, Stretch marks, striae, thin skin, weight
I was diagnosed with Cushings Disease in September of 2015.
I used to be skinny. I was 160 lbs dripping wet. I had a thin face and exercised regularly. In fact, up until 2 years ago, I was doing CrossFit every morning at 5AM, and was pretty good at it!
I guess about 5-6 years ago, I started putting on weight. It started with what I thought was just a beer belly. I was dating a great girl and we went out a lot to eat and drink. I figured I was just getting fat and happy. Fast forward (got married to her) and we started to live our lives together. One day (2012) I was going in for a routine physical and was going over some things with my PCP. He suggested we do a finger prick to check my Glucose levels. The sample showed a 567. He was astonished, and immediately admitted me to the hospital. I ended up taking 5 IV bags as I was severely dehydrated. My PCP then schedule me in for the next day so that he could tell me I had Type 2 Diabetes (runs in family). They started me on drugs and insulin injections. So there I was, being treated for Diabetes (the Sugars as they call them) and High Blood Pressure (HBP).
This went on for a while and my wife and I decided to moved to Florida. In the mean time my undiagnosed Cushings was starting to rear it’s ugly head. Big belly, stretch marks, limb atrophy, fatigue, major depression, reduced libido, moon-pie face, thin skin and bruising easily. The depression caused a lot of issues with my marriage and we ended up getting a divorce. I moved back to Baltimore for support from my family.
I worked at my uncles shop for about a year, then was offered a new job with a great company and I jumped at the chance. By this time, the atrophy in my legs had started to really take effect. The job ended up being too physical for me and I had to resign after 1 one month.
I decided to see a new PCP as I was not happy with my previous one. Within the first 20 minutes of our initial consult, she recognized the Cushings symptoms and quickly referred me to the Endo Department (Dr. Taylor) at Mercy Medical. She had me do a bunch of blood work and urine tests. The cortisol numbers were off the charts.
She then referred me to Dr. Salvatori at John’s Hopkins Hospital (JHH). I was very lucky as she got me in there quickly. After speaking with him, he thought I had a Pituitary adenoma based on the crazy ACTH levels. We did and MRI, and an IPSS. The IPSS showed it was secreting from the right side mostly. The left had some high numbers, but nothing like the other side. In the MRI, they could not see the tumor.
Dr. Salvatori suggested on more thing before resorting to surgery. I am to have a “wet MRI” in January., 2016 This should give a much clearer scan. He also started me on Ketoconozale.
This is all happening very fast (diagnosed Sept 2015), and I am looking forward to the upcoming treatments.
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