October 22, 2026
MaryO
Golden Oldies, Pituitary, Pituitary Surgery, Treatments
24-hour urinary free cortisol, ACTH, bloodwork, dexamethasone suppression test, ectopic, hysterectomy, MRI, pituitary surgery, UFC, Weight gain
From August 12, 2007
I am 32 yrs old. I started having sxs after my 3rd daughter. I started to have face numbness and weight gain after my hysterectomy in 2004. I have had depression since the birth of my daughter in 2003. I had face swelling on and off.
I had started a diet (Chicken, fish, turkey burger, veggies and rice) February 2007. High in protein and low in sodium. I had gained about 30-40 pds since my daughter but then again it was 3rd child. I had lost 24 pds, but was not loosing in my face, upper body and still looked 4 months pregnant after loosing weight. Within weeks I had hypertension, hair all over my face, swelling redness of face, headaches, etc. Ended up in the ER still with no diagnosis and everything related to stress.
I work at a OB/GYN as a medical assistant so I knew something was wrong. One of the doctors I work with kept saying I had Cushing’s Disease but I kept putting her off. I had read about it in school but wasn’t hearing it. I finally did a 24hr urine and to my surprise it was over 1100.
My life had changed since I was dx with this. I did the 5 day suppression twice, (lab messed up the first one). Did 2 MRI’s.
Finally in July 2007 they finally found it!!! I had surgery done July 18th. Still currently on medical leave. Surgery went so well no bruising on my “moon face”. Levels did not drop as expected next morning but ok. 2 days postoperative they did drop in 1/2. Yah!! I’m cured. Have felt pretty good, just tired. Two weeks did 24hr urine, blood work cortisol, and ACTH. Still producing all three. Repeated 1 week later less dexamethasone even. Guess what still producing all 3 but now increasing.
Doctor’s suggest I go off of the steroids now (no point of being on them) and we are going to do more testing. Possible ectopic has been suggested. The surgeon does not want to do radiation or removal due to my age.
I am ready to get on with my life now, and I am confused. I would love to hear from someone with any advise or just to have someone talk to who is going through this.
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October 22, 2026
MaryO
Familial Cushing's, Male, Undiagnosed
24-hour urinary free cortisol, acne, anxiety, blurry vision, cortisol, Dexamethasone, dexamethasone suppression test, dizziness, endo, fatigue, male, Moon face, nausea, painful joints, reflux, respiratory, serum cortisol, skin, spine, steroids, stomach, straie, stress, Stretch marks, tachycardia, trauma, tremors, UFC, weak limbs, weight
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.
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October 15, 2026
MaryO
Male, Other Diagnosis, Thyroid, Undiagnosed
24-hour urinary free cortisol, cortisol, Levothryroxine, male, testosterone, thyroid, UFC, undiagnosed
Hello, I am a 24 year old male who has been feeling out of wack for 4 years now.
I have been going to numerous different doctors to figure out what is going on. It all started with the indication of low thyroid, then noticed low testosterone. I was on levothyroxine for about 2 years. I recently went off all medication, and just had my labs done and i have all normal levels.
Everything i get done is contradictory to my last lab test. I have had positive 24hr cortisol urine results but nothing high enough to diagnose.
Sorry if this is a confussing post 🙂
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October 13, 2026
MaryO
Male, Undiagnosed
24-hour urinary free cortisol, Acanthosis Nigricans, ACTH, Buffalo hump, Childrens Hospital of Philadelphia, cortisol, headache, male, memory, mouth sores, pain, puberty, skin, sleep, slow healing, Stretch marks, UFC, undiagnosed
My son is almost 16 years old and so sick he hardly gets out of bed anymore. Although no Dr.s believes me I do believe he has Cushings and the Dr.s can not give me any other idea’s of what is wrong with him only that he needs to lose weight and exercise more. My son is so tired of hearing this that at his last appointment with a specialist at Childrens Hospital of Philadelphia he left in tears and wants to know why no one is helping him. He is to the point where he doesn’t even want to go to the Dr.s anymore, he thinks it’s pointless. He has only had one 24hr Urine test which came back normal and an cortisol & ACTH test taken at 5pm and these were also within range. I am going to guess maybe things started at the age of 9 or 10 and progressively gotten worse.
His symptoms are as follows and the explained away answers from the Dr.s –
1. Headaches all day everyday – sometimes severe, sometimes just there and no amount of advil seems to take it away completely – Dr.s probably puberty and since he is a big kid take up to 4-advil every 4 hours.
2. Buffalo Hump – we brought him to the Dr. about 2-3yrs ago for this odd hump on the back of his neck – Dr.s it’s just a fat deposit – he just deposits fat in odd places
3. Red to purple stretch marks that fade and get brighter but never go away completely – they appear in masses on his sides, back, shoulders and stomach – Dr.s response although his stretch marks are quite impressive they are typical of what you would see in cushings they are not purple enough or wide enough.
4. Severe pain in back and knee (sometimes elbows) – he can’t even take a simple trip to the stores as it is to much for him to walk around – his is 15yrs old and is now asking me to get him a cane to help him get around. Dr.s response to the pain – must be growing pains (my son is 6’1″ and I was just told he is pretty much done growing)
5. He does not sleep at night, says can’t fall to sleep no matter how hard he tries and when he finally does fall asleep in the morning early hours he will sleep most of the day, then wake up still feeling tired. He told me it’s like his mind sleeps but his body doesn’t feel rested at all. Dr.s said he needs to stop video games and t.v. to hours before bed – these types of things stimulate the mind thats why he can’t sleep.
When the Dr.s were told the rest, they really didn’t say anything at all – below are the rest of his symptoms:
6. He is starving at night – he says he has to eat he is so hungry
7. Having a hard time remembering things and getting progressively worse
8. Losing his grip – he can barely right his name – when I ask him to squeeze my hand it hardly even hurts me now and he says when he tries to squeeze hard he gets this odd sensation up his arm and it feels really off .
9. Has a hard time sitting for an extended amount of time – this has caused him to miss the last 6 weeks of school – his says the pain in his back and sides are just to much to handle when trying to sit.
10. He has had numerous skin aliments, mouth sores
11. Always thirsty
12. Acanthosis Nigricans – back of neck, under arms, elbows
13. never a sick child until recently – strep throat, mono (which I was first told he didn’t have), normal colds now last for weeks with him where he never even got colds before.
14. slow healing of cuts and he scars horribly
I am sure there are other things but these are the first to come to the top of my head. His biggest complaint is the memory loss, lack of sleep and pain. I am scared for my son and do not understand how this is acceptable for anyone let alone a 15yr old. I am watching him get worse and watching his precious teenage years just pass right by him.
Contact Denise here.
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October 12, 2026
MaryO
Adrenal, Adrenal Surgery, Cyclic, Male, Treatments
24-hour urinary free cortisol, ACTH, adenoma, Adrenal, Adrenalectomy, aldosterone, anxiety, Blood pressure, Blood test, bone density, cortisol, cyclical, cyclical Cushing's, depression, dexamethasone suppression test, endocrinologist, glucagon, glucose, macro nodular adrenal hyperplasia, male, metoclopramide, Multinodular adrenal hyperplasia, pituitary, renin, scan, stress, UFC, vassopression, weight
Hi, I have been diagnosed with probable cyclical adrenal cushings. This all started after a scan on my abdomen for something unrelated revealed bilateral adrenal adenomas. When I googled adrenal adenoma everything fitted into place. I had been depressed , put weight on which were my main symptoms along with anxiety.
I was then referred to an endocrinologist in the UK who ordered some initial tests. I did Two 24hr UFC’s on consecutive days one came back at 36 and the one the day after was 91(normal below 50. Another time the normal range was 165 and the 1st one was 108 and the one the day after was 393.
I then did an overnight dexamethasone test and suppressed below 50 to 48. My endocrinologist then said he didn’t think I had cushings and said come back in six months and said it might be due to stress. I then got a second opinion and then the real testing started.
Roll forward four years and I have done about 30 – 24hr UFC’s numerous ACTH and full blood counts. renin and aldersterone, metoclopramide test, glucagon test, vassopression test, oral glucose stimultation test, day curve cortisol, spent a day in hospital walking round the ward for two hours, then eating a mixed meal and then sitting down for two hours while they tested my cortisol every hour . Did a Low Dose Dexamethasone Test and came out in a rash and my blood pressure dropped so got told I can’t do the test again. Had a bone density scan. I hIad a pituitary scan that revealed a lump inside my tongue and then had to have a whole body scan followed by a tongue biopsy(which turned out to be benign.
I have had about five CT scans on my adrenal glands and was referred to an endocrine surgeon this week who is going to perform a right adrenalectomy. The right one is 4cm in diameter.
He said looking at the scan he thinks it looks like macro nodular adrenal hyperplasia but wont know till pathology get to examine the specimen.
It’s been a long, long journey but finally looks like it’s coming to a conclusion now.
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October 1, 2026
MaryO
Adrenal, Diabetes, Other Diagnosis, Undiagnosed
24-hour urinary free cortisol, adhesions, Adrenal tumor, Buffalo hump, diabetes type 2, hair, hirsuitism, moonface, scarring, sleep, sweating, tired, UFC, weight
Hi
I’m new to cushings and just looking for some insight into this disease. I’m 67 yrs and for the last 15 yrs I have not felt good and problems getting worse with no explanations in the past. After discussing problems with my Dr I was tested twice for thyroid but tests came back normal.
I do have other problems due to surgeries in the past, I have adhesions, scar tissue etc. I am now type 2 diabetic since last 5 yrs.
I was admitted to hospital because of stomach pain in July this year, I had a cat scan which showed I had tumours on my adrenal glands. The left being the largest. I am waiting to see the endo surgeon in November but have just finished some tests I’ve blood, 12 hr and 24 hr urine specimen. No results as yet.
My symptoms are as follows.
Sweating mainly evening time around 9pm
Can’t sleep until 3am, but could easily sleep on afternoon if I allowed myself.
Changes in face. When I look in mirror I often think this does not look like me.
I have put weight on but not a lot. I have been noticing a lot of facial hair on my face.
I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.
Some things I can maybe put down to age.
I would appreciate any comments from members. I will let you know when I get results.
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September 14, 2026
MaryO
Golden Oldies, Undiagnosed
24-hour urinary free cortisol, Golden Oldie, UFC
A Golden Oldie
well, hmm, after years of wondering whats wrong with me, I came across this thing called Cushings on the net, and low and behold it explains everything… now I am on the quest of getting a dx. But my husband works for the local goverment and here they send us to a “free” dr. I really think that this “free” dr is paid to NOT find things wrong with us….
Wish me luck, I just did my first 24 hour urine, (waiting on the results) and after I get those results based on if they find anything I will pay for a REAL dr. out of my own pocket….. HELP!!!!!!!!!!!!!!!!!!!
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July 10, 2026
MaryO
Hypothyroidism, Undiagnosed
24-hour urinary free cortisol, anemia, bloodwork, cardiologist, cotton swabs, cry, cushing, Cushing Syndrome, depression, dizziness, endocrinologist, fatigue, heart palpitations, hypothyroid, insomnia, Levothryroxine, Moxie, Multi-vitamin, PCP, saliva, sleep, Symptom, thyroid, UFC, vertigo, Vitamin B-12 Deficiency, Vitamin D Deficiency, Worry
I’m a 33 year old female. I have 3 young boys ages 8, 5 & 2.
About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day. I went to my primary physician who stated I might need to have my thryroid rechecked. I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine. He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D. He suggested I try a multivitamin. I went out and splurged on the best vitamins I could find but they were of no help.
I returned after experiencing palpitations and dizziness. I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them. I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.
My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered. He suggested I take a sleep study test to check for insomnia. The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.
I was referred to a cardiologist becasue I was also feeling extremely cold and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier. I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.
I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists. My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.
I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name. She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done. I did this and she called me stating the tests came back abnormal and she wanted me to do another tests. She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results. She told me not too panic and just go about life as usual.
I came home with a 24 hour urine collection container and another round of saliva tests. I got a call from her nurse stating everything was normal. I insisted I wanted a f/u visit with the Dr. At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.
This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry. Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.
My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me. I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.
~~~
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July 1, 2026
MaryO
Adrenal Insufficiency, Other Diagnosis, Thyroid, Undiagnosed
24-hour urinary free cortisol, adrenal fatigue, adrenal gland, brain fog, cortisol, dexamethasone suppression test, endocrinologist, energy, Epstein Barr, fainting spells, fatigue, h.pylori, hematologist, moonface, muscle ache, pain, rash, salivary, steroid cream, T3, vitamin D, weight
Hi. I am a 40 year old female who has been feeling “not quite right” for almost 10 years. I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years. I continually have vitamin D deficiency issues. I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.
This year, I started feeling worse than usual. I have zero energy and my brain is in a perpetual fog. My muscles and body ache, my face is round, and I have gained 40+ lbs over the years. There are days that I physically cannot get out of bed. I have fainting spells and a racing heartbeat at times. I crave carbs and salt. There is not enough water in the world to drink and I have to run to the bathroom frequently. No matter how hard I try the weight will not come off. When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.
I was an avid equestrian- 3 day eventer. I was riding and showing no less than 3 times a week. I was getting fit. Now I am just a useless blob that can’t do anything. I have been pushing to go to the barn to just groom and be with my horse as much as I can.
My doctor found that I have an unusually high blood cell count a couple of months ago. I was sent to a hematologist to find out why. We did so many tests I quit counting. The conclusion was that I am not sick enough to be sick. So many tests were coming back normal or high normal. No lupus, no leukemia, no answers. I finally asked about Cushing’s because I have a majority of the symptoms listed. My doctor was skeptical, but agreed to let me do a 24 hour urine test. It came back high. This has allowed me to move to an endocrinologist. I also have high levels of reverse T3.
So far I feel like a complete lab rat. I have now done 2 salivary Cortisol tests and have another urine test this week. One of the 2 saliva tests came back very high. My doctor said we have to do yet another saliva test to test the last results. After all of this we will do a dex suppression test.
At this point I am very depressed that I am unable to live my life. Riding is not an option because I just get “floppy” and risk falling off. I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.
I am so lucky to have a doctor that believes my symptoms are real. She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do. For now, I am just a good lab rat.
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