May 8, 2026
Adrenal Addison's disease, adrenal gland, Adrenal insufficiency, cancer, Conditions and Diseases, cortisol, cushing's syndrome, Health 3 Comments
im a 45 yr old female been feeling sick for 5-6 years. like i got flu all the time,real big and fat i am,aching wrists ,knees,SLEEPY always.anxiety ridden….. fatty deposits on collarbone.adrenal mass found in december,
was sent to surgeon and told if its a functioning tumor it mst come out-just got back from my supression test. results in a week.will be a long week…but i pray it can be fixed if its cushings or whatever it is.. God bless.
May 8, 2026
Undiagnosed acne, anxiety, Blood test, bruising, Celiac, cortisol, Crohn's, cushing's syndrome, depression, diarrhea, dry skin, eczema, fatigue, Fibromyalgia, hair, Health, high blood pressure, hypertension, IBS, insomnia, Irritable bowel syndrome, kidney infection, kidney stones, low ferritin, low iron, night sweats, painful joints, periods, skin, thyroid, UFC, Vitamin B, Vitamin D Deficiency, weight, Weight gain, Weight loss, Weight Watchers 1 Comment
I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.
Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones. My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.
I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.
I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.
The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.
I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.
I need advice.
May 8, 2026
Pituitary, Pituitary Surgery, Treatments bloodwork, blurry vision, Cabergoline, carotid artery, cavernous sinus cavity, cortisol, cushing, Cushing Syndrome, diet, edema, exercise, exhaustion, gamma knife, high blood pressure, Houston, hydrocortisone, hypertension, Inferior petrosal sinus sampling, insurance, IPSS, Magnetic resonance imaging, MD Anderson, MRI, pregnancy, radiation, run down, saliva, sinus disease, Stretch marks, striae, transphenoidal, transsphenoidal, tumor, UFC, urinalysis, Vitamin D Deficiency, water retention, weight Leave a comment
The pituitary gland
I was diagnosed with Cushing’s Disease in September 2012. I started my search for a diagnosis back in March.
So here is how my story goes… in January of 2012, I decided that i was going to change my diet and exercise. I had weight to lose from a previous pregnancy. I began working with a nutrionist and personal trainer. I spent a lot of time working out and logging everything that went into my mouth. I even tracked my water intake. It became very obvious that for a hard as I was working that something was wrong. i was gaining weight instead of losing. I was also feeling very run down. I had also started noticing that I did not have very many patience for much of anything and I felt very uptight about silly stuff. I decided to go have my hormones checked.
At first the doctor told me that I was extremely deficiet on vitamin D and needed to drink a lot more water. He said we need to run more tests. He did a salivary test and some bloodwork to check my corisol levels. On my follow up with him he said that i had very high cortisol levels and wanted to run more test. He then went on vacation for a few weeks. I was unable to get answers from his nurse and then he was so behind when he came back that i could never get an appointment.
I started researching on the interenet about high cortisol levels. Everything that I was reading sounded like me. Weight gain (i had gained 100 lb), exhaustion, stretch marks, blurred vision, high blood pressure, water retention, etc. I found another endocrinologist and made an appointment. I told him all my symptoms and what I felt was wrong with me. He asked me what i wanted him to do. I suggested some of the tests that I had read about because I thought i might have cushings and he said, “ok, let’s get started but, cushings is very rare and I doubt that is what is going on”.
After running blood work, 24 urine test, plus many more test, he told me that I had Cushing’s Syndrome. He indicated that this was very rare and that he had not seen but one case before. He ordered an MRI. The radiologist that read my MRI said that he did not see a tumor. However, he did say that he saw “sinus disease”. Now I have never hear of that so i questioned it. I was told that I would need to go to a ENT doctor for learn more about that.
The endo doc wanted to proceed with the IPSS test. I keep studying on the interenet about the disease and all the testing. I even watched a few pituitary surgeries. I just felt like I need to know everything possible besides, I could not sleep so this was a great way to spend hours. I also kept reading all that I could on this site as well. I met with a local neurosurgeon and he scheduled the IPSS test. I asked him about how we would proceed if my test results showed positive for a pit tumor. I was basically told since no tumor was seen in my MRI that the IPSS test would help them to decided which side of my pit they would take. I was totally not comfortable with just losing part of my master gland. I kept my scheduled test but started to research experts in cushing’s. Then I researched which were covered by my insurance.
In the meantime, I kept the appointment for the IPSS since I didnt want to lose any time. I checked into the hospital and got prepped for my test only to have the doctor come in to tell me that we would not be doing the procedure because the company that made the medications used for testing no longer was making the mediation. Now then, how do you not know this before you prep someone for the procedure?!?! I told the doctor that there were other hospital that were treating cushing patients and were performing this test. I had been reading about them on the boards. He told me that there was not anyone in the US that had the meds. That was when I really knew that I was going to have to leave my state to get treatment.
I called my endo and explained what had happend and asked for a referral to MD Anderson in Houston, TX. I also went online and did a self referral. I just kept following up with them. They have a pituitary tumor board that reviews cases. My case was approved and I had my first appointment in Sept 2011. I spent on day running tests, having an MRI and meeting with the a new endo.
Within 48 hours, he confirmed that I did have cushing’s disease and showed me the tumor on my pituitary. In November 2011, I underwent transphenoidal pit surgery. An 8mm tumor was removed. There was some concern because the tumor was right up against my cavernous sinus cavity. This is where your carotid artery is and the surgeon did not want to get close to this artery.
Unfortunalely, I did not experince a “crash” after surgery. My levels did indicate they were in the normal range so the doctors sent me home with a perscription of hydrocortisone.
English: Cavernous sinus (Photo credit: Wikipedia)
for me. He is going to confer with my endocrinologist and then I will go from there.
May 8, 2026
Adrenal, Adrenal Surgery, Treatments accupuncture, ACTH, Adrenocorticotropic hormone, aging, blurry vision, bone density loss, cortisol, cushing, Cushing Syndrome, cushing's, cyclical Cushing's, DHEA, diet, edema, exercise, forgetful, hot flashes, Magnetic resonance imaging, menopause, moody, MRI, National Institutes of Health, NIH, osteoporosis, panic, pituitary, pseudo Cushing's, sleep, stress, surgery, tired, weight Leave a comment
HI!
I had Cushings symptoms for about 20 years (I am 43) before I finally had surgery at NIH on August 29, 2012. Before 2 years ago, I had never even heard of Cushings. Without the aid of a very perseptive medical accupuncturist, I would probably still be suffering today. Perhaps, if I had heard about it sooner, I wouldn’t have suffered for so many years. My goal is to help as many people as possible in battling this devastating disease.
I am so happy that I have a new chance at a real life! Feel free to contract me. Below is a piece I wrote before surgery and my stats.
🙂 Marian
————————————-
My Experience with Cushing’s Syndrome
The changes came about gradually. So gradually, that it is very difficult to pin-point exactly when the overall change became larger than the sum of individual changes and thus was something that was difficult to ignore. For my whole life, I was “Marian” and then one day, I was someone else. I had become someone unrecognizable: the “Not Marian.”
One of my favorite books, “The Tipping Point,” by Malcolm Gladwell, expands on the premise that little changes make a huge difference. Individually, the changes I experienced were easily explained. I was tired. I had nighttime hot flashes. I gained weight. I was moody and forgetful. My sight was blurry. I often typed or said the wrong word. I couldn’t sleep. I couldn’t remove my rings without soaping up my finger first. One day, I forgot how to roll down my car windows. I experienced moments of panic where I was driving and couldn’t remember what road I was on or where I was going. When I mentioned any or all of these symptoms in a group of women over forty, I heard a cavalcade of similar stories, usually expanding into an animated discussion centering on menopause and aging.
I also noticed that I stopped getting compliments. People, except my amazingly supportive husband, just didn’t say that I looked nice or pretty anymore. I tried not to be vain; I thought that I probably had just reached the point where I aged enough that I no longer was going to get the attention that I used to get. I had “hit” the proverbial “wall.”
It is easy to look in a mirror and only see a stylized version of yourself. But, photos are more precise. For some time, I had noticed something “off” in the photos that were sometimes posted of me on-line. They just didn’t look like me anymore. I untagged myself and brushed them off as bad photos with only the vague realization that the “Marian” I thought I was, was no longer me.
My epiphany came in the form of the photos on my work identification cards, taken about three years apart. Not only do I look like I have aged about ten years — I also look completely different. My face is much fuller, my features are distorted, my eyes are sunken, my hair is stringy, and my skin is sallow. I look like a bad photo copy of my former self.
Now, I realize that how I look is a small part of who I am as a person. However, it is also the part of me that everyone sees first. I remember being in the dressing room at Target and catching a glimpse of the “Not Marian” in the mirror. I was astonished at my reflection and cried.
A friend suggested that I just realize that this “Not Marian” is who I am now. I don’t think that this bad advice; it is just advice that is easy to say, but difficult to follow. I often compare my sense of futility regarding my desperate attempts to become “Marian” again to Hercules’s labor of cleaning the Aegean Stables. I exercised four or so times a week. I went to a diet doctor. I ate under 1200 calories a day. I bought new clothes. I got my nails done. Despite these efforts, I only saw minor improvements in the way I looked and felt. I still felt as though I was always wearing a rubber suit over my skin that covered my former self.
In many ways, the diagnosis of Cushing Syndrome was a relief. Finally, there was an explanation for the way that I felt and, though serious, Cushing’s is generally a completely curable disease. But, knowing I have Cushing’s presents another problem, when is it appropriate to tell peop
My initial inclination was to tell everyone. I wanted to explain the difference between the “Marian” you remember and the “Not Marian” that you see now is a result of this rare disease I have. “It’s not really me! It’s the Cushing’s.” I tried it a couple of times with mixed results.
Mostly, people said that they had not noticed a significant change in the way I looked or behaved. My closer friends were more tolerant, expressed concern, and asked questions. The reality is that nothing (except maybe vacation recaps) is more uninteresting in light conversation than talking about illnesses and ailments. And though it was significant to me, the changes were not readily observable. So, I will try not to talk about it.
I know that my upcoming surgery is not a panacea, though it is nearly impossible not to view it as such. I have scrolled through hundreds of websites and blogs looking at photos and reading synopses of people before and after treatment. I have connected with someone who was successfully treated for a Cushing’s syndrome through Cushing’s Support and Research Foundation. Ultimately, my hope is that the loss of me is only temporary and that through successful treatment of the disease; I can begin to feel like “Marian” again.
STATS
July 2010: MRI at Kaiser showing a pituitary adenoma. High 24 Hour cortisol. Low DHEA. Low ACTH. Referred to NIH.
Late July 2010: CT at Kaiser showed “suspicious” tumor on left adrenal. (High HU, e.g. cancer)
Sep 2010: NIH testing.
Nov 2010: NIH re-read the results of CT and MRI. NO pituitary adenoma and BENIGN tumor on left adrenal.
Dec 2010 – April 2011: Unable to replicate high cortisol test at NIH. Diagnosed as pseudo Cushings due to stress. Yearly follow up recommended.
April 2012: Follow up testing at NIH. Cortisol is high. CT of adrenal tumor is stable.
June 2012. Second cortisol at NIH is high. Diagnosis cyclical Cushings. Will not operate. Note that I do not look like clinical Cushings, so that was part of the problem.
July 2012: Bone density loss of 25% in three years confirmed through Kaiser. I happened to luckily have had a previous bone scan so that they could compare. The current bone density scan wouldn’t have been enough because I didn’t have osteoporosis yet.
Aug 6, 2012: Referred for surgery on Aug 27.
Aug 26, 2012: Enter NIH. Surgery postponed but I can’t leave because of the testing!
Aug 29, 2012. Surgery! The surgery itself was easy.
Sep 2, 2012: Left NIH
Returned to work half days Sept 4 and full time Sep 10.
May 8, 2026
Pituitary, Pituitary Surgery, Treatments blog, cortisol, cushing, Cushing Disease, cushing's syndrome, Endocrinology, Health, Magnetic resonance imaging, MRI, pituitary, pituitary surgery, recovery Leave a comment
After constant wondering for over two years, I was sent to see an Endocrinologist about my weight. Numerous tests and an MRI, I was diagnosed with Cushing’s Disease.
I am 2 months post pituitary operations and things are lookings up.
Heres to a road to recovery! 🙂
See my full story here: www.mylifeasacushie.blogspot.ca
May 7, 2026
Pituitary blog, cortisol, cushing, cushing's, cushing's syndrome, Family medicine, Health, pituitary, Weight loss Leave a comment
I was diagnosed with Cushing’s Disease January 2011. The doctors suspect I was suffering from it for at least 2 years prior to diagnosis.
I originaly thought I was just losing weight and having skin problems due to stress and getting older – even though I was still in my mid-late twenties.
A family friend and nurse told my mom one day that she thought I had Cushings and encouraged my mom to get me to look into it. Thank goodness I did. I had honestly nearly given up because I was so ashamed to go to doctors who just told me I needed to work out more and eat less. I was making an effort to lose weight but nothing worked! I told my mom no at first but after a few phone calls of her crying and begging me to go I finally agreed. I sat down at my computer and googled symptoms and sure enough I fit almost every descriptor on the Cushings list.
It took a few months to get into a specialist but my family doctor rushed it. I was so lucky to have this doctor. She was actually just covering for my regular doctor but she was the first one to take me seriously and really investigate my concerns.
Now, two years and three pituitary surgeries later things are looking good! I am back to work and feeling better than I can remember feeling in a long time. I have kept a blog sporadically documenting my experiences with Cushings that I invite you to read for more details on my bio. I hope that my story can be an inspiration to those who are feeling hopeless. I often felt that way but tried to stay positive and believe that one day I would be cured and fingers crossed, it seems like I am 🙂
It is possible to come out on top!! Best of luck to everyone 🙂
May 7, 2026
MaryO, Pituitary, Pituitary Surgery, Treatments cortisol, cushing, Cushing Disease, cushing's syndrome, Health, Magnetic resonance imaging, pituitary, pituitary surgery, surgery Leave a comment
Good Evening, My name is Stacy…I am 1 year Post-Op (2 Pituitary Surgeries in 3 days) and feel absolutely WONDERFUL!
After MUCH reflection I am thankful for what I have gone through. Although Cushing’s Disease is something I wouldn’t wish on any one; I must say I have been and am enriched day by day. Enriched with more knowledge and understanding and the ability to help others.
After 14 years of un-diagnosis FINALLY THERE WAS AN ANSWER. One, there was the Primary Care Physician who suggested it and there after this Board.
MaryO, without you I would probably be in my grave. Thank You for your dedication and sharing so much of your self with us! PS. Thank You for sending my Dear Friend Anne from Australia: she’s the BEST!
We adore you!
Stacy
May 7, 2026
Diabetes, Hashimoto's, Undiagnosed ACTH, Adrenocorticotropic hormone, biopsy, Blood test, Buffalo hump, Conditions and Diseases, cortisol, cushing's syndrome, Endocrine Disorders, eyes, fat, fatigue, goiter, hair, Hashimoto's, headache, Health, hirsuitism, insulin resistance, muffin top, nodule, osteopenia, pain, saliva, sleep, Thyroid scan, UFC, urinalysis, Victoza, weight, X-ray computed tomography Leave a comment
I have been seeing the endo for the last couple of weeks. Lots of blood tests, saliva test, 24 hour urine test. Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.
Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance. First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH. Doctor said possible cushings. Have had extreme fatigue, beard on chin. Muscle and bone pain consistently. Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia. Appt. with endo tomorrow to get results of 24 hr. urine test. Salavia test said was normal.
Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all. She said that I had the hump, muffin top, and belly fat, lean arms and legs. Eyes are puffy all the time now. Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free. Eat lots of vegetables and fruit as well as a little protein. Have not had a mri or cat scan yet. Probably will be next on the list. Will post after my doctor’s appt. tomorrow and update my bio.
I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.
May 6, 2026
Pituitary allergies, Birth control, brain fog, cortisol, cushing, cushing's syndrome, hair loss, headache, hirsuitism, PCOS, period, Polycystic ovary syndrome, rash, saliva, sinus infections, Stretch marks, striae, Symptom, tired, ultrasound, weak, weight Leave a comment
Hi!
My name is Marki, and I am a 21 year old student. I have been suffering from Cushing’s-like symptoms for a while now, and the doctor at my college health center just recently told me that I most likely have Cushing’s.
My symptoms have all intensified over the past few years. I have gained almost 60 pounds in the last 11 months, I feel weak and tired almost all the time and my muscles have gotten so weak that I have a hard time walking up 2 flights of stairs to my apartment. I sleep for at least 10 hours a night, and have to set at least 5 alarms to be able to wake up for my 9:15 class, and I still end up missing it a lot of the time. I feel like I am walking around in a fog most of the time, and school is harder than it’s ever been. I am having a really hard time retaining information, even after studying for hours.
About 3 years ago I started growing hair under my chin, and getting stretch marks on my boobs. The stretch marks have now appeared on my belly below and around my belly button. My hair has always been really thick, and I have noticed that it is a lot thinner than it has ever been. I have also developed a lot of new allergies, including raspberries, tide laundry soap, nickel, and something else that I haven’t figured out yet, so I have a rash all over my stomach, armpits and thighs. I have had severe headaches since I was about 14, and they are getting more and more common. I also get frequent sinus infections. I got implanon (a type of birth control that they implant in your arm) about a year ago, and haven’t had a period since it was inserted. I have been on birth control (perscribed because of the hair on my chin) since I was 17, so I don’t really know if my period would be regular without it or not.
When I went into the health center I told the doctor about all of these symptoms, and his first thought was PCOS. I had an ultrasound, and there were no cysts. He then started testing me for Cushing’s and referred me to an endo in San Francisco. The endo ordered both a 24 hour urine test and a midnight saliva to be done before my appointment. These were the results:
24 hour-
range- 0-50
me- 49.7
Midnight saliva-
range- .5-1
me- 9.16
So, my free cortisol was within range, and my saliva was more that 9 times the normal levels. I have read a lot about Cushing’s in the last two weeks, but I still have a lot of questions! If anyone has any advice on how to deal with the sleep issues, what tests to request, or any other advice, I would really appreciate it! I need to figure out how to stay awake during the day so I can pass my classes!
Update:
My names Marki, and I am a 21 year old senior at Westmont College. After I finish my bachelors I plan on going to Physicians Assistant school to get my masters. This has been a crazy year for me. A few months ago, my doctor told me that I might have Cushing’s, and since then it has been a constant parade of tests. My body and attitude have changed SO much, and it is making school and life in general really hard. I am lucky to have the support of my family and friends, and I can’t wait to get through this and get on with my life! If anyone has any advice, feel free to message me 🙂
May 6, 2026
Diabetes, Pituitary, Pituitary Surgery, Treatments Blood test, cortisol, CT scan, cushing's, cushing's syndrome, diabetes, Health, Magnetic resonance imaging, MRI, radioactive injection, surgery, weight, X-ray computed tomography Leave a comment
In the early part of 2007 I was feeling very tired, was gaining weight even though I was eating 800 – 1000 calories a day and exercising 1 hour per day. I would go to my doctor and she would dismiss me inferring that I was just an overweight, middle aged woman looking for a quick fix to loose weight and control my diabetes. This went on for several months with me seeing her every 3 or 4 weeks with the same complaint.
Finally in mid 2007 I said enough was enough and demanded that she order some blood tests. Well, she ordered the 24 hour urine collection test for cortisol and lo and behold, my cortisol levels were off the chart. I was immediately referred to my endo and after ruling out many other things with MRIs, CAT scans and full body scans with radioactive injections,
I was referred to my neuro surgeon and he saved my life. The beginning of December of 2007, I had surgery to remove 1/2 of my pitutary gland that had micro (benign) tumors. 12 hours after surgery, my cortisol levels wer down to the high “normal” range.
Today, 5 years later, I have no cortisol issues at all and now my endo says I have a “history of Cushings disease”.
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