October 28, 2026
MaryO
Golden Oldies, Male, Pituitary, Pituitary Surgery, radiation, Treatments
anxiety, cortisol, depression, diastolic heart failure, fatigue, Golden Oldie, Ketoconazole, male, muscle weakness, osteoporosis, pituitary, radiation, restless legs, restlessness, surgery, tumor, Weight gain
My Comments: (will add more later, written by wife)
Pituitary surgery 12/15/05 but not able to get it all.
33 treatments of radiation in April/May 2006
April 2007 still have Cortisol level of 166, back on Ketaconozole
remaining tumor measures 2.6 cm x 1.8 x 1.4
age 51
Cushing’s has lead to:
diastolic heart failure
osteoporosis
gaining 60+ pounds
restless legs
muscle weakness
fatigue
dry heaves (anyone else have this??)
anxiety, depression, restlessness
currently monitoring Cortisol levels, to have another MRI in August
keeping adrenalectomy as last resort
would appreciate tips/suggestions….
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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 6, 2026
MaryO
Male, Pituitary, Pituitary Surgery, Treatments
Navy Navy SEAL, pain, pituitary, surgery, triathlon, wounded warrior
Diagnosed with Cushings while in the Navy, in pursuit of Navy SEAL.
– Had the drill through the face surgery.
– Skipped most pain killers
– refused convalescent leave
– 1 month after rode first 400 mile bike ride (sucked)
– 2 months after, rode second 400 mile bike ride (better)
– 3 months after, raced first triathlon (sucked)
– raced a few more triathlons and 300-400 bike rides
– began racing bicycles
– refused medical retirement from the navy
– Raced RAAM, a 3000 mile 8 day bike race (sucked, and awesome, depends how you look at it)
– Was found fit for full duty
– Was granted a full dive physical for Spec Ops
– Trained with the SEALs for 6 months
– Was awarded a SEAL contract (but was not allowed to go due to Navy politics, such is life)
– Currently play D1 Rugby
– Active member and chapter captain (soon to be) of Team Red White and Blue, a wounded warrior support/awareness group
– Still going strong and always looking for the next challenge.
Destituts Ventis Remus Adhibe (sign I put up in my hospital room during the whole Cushings adventure, means: If the Wind fails to serve, take to the Oars).
– Ive been there, Ive done it. Its all a matter of staring down the nightmare and showing more determination and resolve than it has. Cushings is a wimp. Ok yeah it sucked, but I owned it.
Seriously though, all joking aside, if there is anything I can say or do for anyone going through it all, let me know.
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September 22, 2026
MaryO
Golden Oldies, Male, Undiagnosed
back pain, blurry vision, diarrhea, fatigue, headaches, impotence, insomnia, male, memory loss, muscle ache, painful joints, Stretch marks, striae, weight
A Golden Oldie
My Comments: Onset symptoms: headaches, low back pain, diarrhea, fatigue, muscle/joint pain, memory loss, weight gain in abdomen, bloaded red face, & blurred vision.
Ongoing symptoms: right flank pain (just underneath ribs), stretch marks on stomach and back of upper arms (not purple), impotence, blurred vision, dry/itchy eyes, insomnia, fatigue, muscle joint pain, memory loss, fat around abdomen & face.
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September 12, 2026
MaryO
Adrenal, Diabetes, Male, Other Diagnosis, Steroid-Induced
adrenal glands, diabetic, heart failure, Prednisone, steroids
i am a 65 year old male who was diagnose with cushings about 7 yrs ago
i have no adrenal glands that are working
i have to take prednisone to keep me from crashing
am now a diabetic and have heart failure
i spend 99% of my life in bed i am very weak and in pain most of the time , my family doctor keep giving me prenisone and never gave my body a break from this drug so now what caused me to be so sick is what i have too take to stay alive.
my doctors now really dont no that much about cushings so i feel as though i am just stuck ,
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July 7, 2026
MaryO
Diabetes, Male, Other Diagnosis, Undiagnosed
cortisol, diabetes, hair loss, male, MS, Multiple sclerosis, neuropathy, pain, tired, weak, weight
Hi, My name is alex and i honestly have no idea what’s wrong with me.
about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…
finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered
one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…
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July 4, 2026
MaryO
Hashimoto's, Male, Other Diagnosis, Undiagnosed
actemra, Buffalo hump, cataracts, congestive heart failure, fatigue, gout, humera, husband, hypothyroid, listlessness, male, methotraxate, moonface, pitting edema, Prednisone, Rheumatoid Arthritis, Stretch marks, thin skin, vision, weight
This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.
Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.
Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.
June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.
I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.
A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.
Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.
In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.
I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.
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