May 7, 2026
MaryO
Steroid-Induced, Thyroid
bloodwork, cardiac ablation, Conditions and Diseases, depression, ER, Health, Medical Specialties, Medicine, pain, Pain Management, pericardium, pleurisy, Prednisone, PVC, thyroid, ultrasound, X-rays
I am 61 and have been taking prednisone for over 3 years without a successful taper. My journey begans with a cardiac ablation for PVC’s , that ended with my heart being punctured during the precedure. I came home after 2 days in the hospital without a problem. On the 3 day, pain in my chest was unbearable. I thought it was a heart attach. Called the Dr., he prescribed a prednisone pack, like you take for poison ivy. A week so later, I was in the ER with the same pain. More prednisone, higher dose. ER visits have been to many to count by now. Many chest exrays, ultra sounds, echos, with no sign of fluid around the pericardium.
Last ER visit, June 2012, this time it was pleruisy. Seems this inflamation just move around in my upper body. So higher doses of prednisone and send home to taper again. Today I had a bad day, as I have been trying to taper and the pain comes back, this time in my shoulder and right chest. I took 25 mg. today and am pain free now.
My problem other than addiction to prednisone is that no Dr. will treat me. My cardi says its not his problem, even my primary will not treat me. Says she will not prescribe prednisone. An endo. Dr. at John Hopkins prescribed me 1 mg. tablets last year with refil, however, I am down to my last bottle and using fast.. The endo was my thyroid Dr., had the thryoid removed last Aug., anyway, I would like to know if anyone out there knows a Dr. in the D.C/ Baltimore Metro area that they have used that treats prednisone addiction? I am lost to fix this., with no help so far, unless I end up in the ER, then that is only a temp. fix.
I went to my regular Dr. last week, as follow up to ER and she said, ”It sucks to be addicted to prednisone doesn’t it. ” Told me she couldn’t find anything wrong with me and was ready to leave, Iask if she could at least do blood work, make sure all was o.k., since I was on this drug. She signed the lab slip.I still have it, don’t even want to do that.. just depressed about the entire ordeal at this point.
Thanks for listening.
May 7, 2026
MaryO
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
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
MaryO
Adrenal Insufficiency, Pituitary, Pituitary Surgery, radiation, Treatments
Adrenal insufficiency, Buffalo hump, Conditions and Diseases, cushing, cushing's syndrome, cyber knife, Endocrine Disorders, gamma knife, Health, hydrocortisone, hypertension, Megace, moonface, Pancreatitis, pituitary, radiation, striae, surgery
I was dianosed with Cushing’s Disease in 1998. At the time I looked like a textbook case. Moon face, buffalo hump, wasted extremities, straiea, hypertension, pancreatitis. Had resectioning of pituitary in 1998 but had reoccurance in 2002 at which time I had the cyber knife gamma radiation treatment.
Now no cushing’s but I have adrenal insufficiency from the treatment and have to take replacement hydrocortisone and I also take Megace. I have been sick lately and don’t have a very good Endo so I have many questions and I am seeking feedback from others who have post-Cushing’s complications. I want to continue to be active and productive and hope to learn from and also share with others.
May 5, 2026
MaryO
Hypothyroidism, PCOS, Undiagnosed
acne, Alopecia, Buffalo hump, Chronic fatigue syndrome, Conditions and Diseases, cushing's syndrome, dex test, dexamethasone suppression test, fatigue, hair loss, Health, heat intolerance, hirsuitism, hypothyroidism, irregular periods, metformin, mood swings, PCOS, Polycystic ovary syndrome, shingles, Stretch marks, striae, thyroxine, Weight gain
Hi there,
I’m not really sure where to start! I’m 22, and work full time (10-12 hour shifts) as a porter in the operating department of a city centre hospital- so i’m very very active, constantly walking/lifting/carrying on a daily basis.
I was diagnosed with chronic fatigue when i was 13 after a bout of severe flu/repeated shingles infections, and never really recovered, but i was gradually well enough to live a more or less normal teenage life. I have never struggled with my weight (a constant 9 stone at 5 foot 5), until a year ago, when i suddenly started suffering from extreme weight gain (7 stone in 10 months), fatigue, acne, mood swings, hair loss where there should be hair/hair growth where there shouldn’t be, stria, irregular periods (and when they arrive they’re incredibly heavy, buffalo hump, heat intolerance and all manner of horrible symptoms.
I’ve been diagnosed after tests and ultrasounds with PCOS and hypothyroidism, and am currently being treated with 75mg thyroxine (to be increased), and am due to start on metformin.
There’s been very little improvement in how i feel, and after a pretty horrible meeting with the endo, in which all she really did was call me fat, tell me to stop the late night trips to mcdonalds (I’M VEGAN! mcdonalds is pretty much the antichrist to us!) and refer me to the dietician. i felt really let down and all i could do was try to hold the tears in until i got back to the car.
she didn’t seem to realise that for a 22 year old woman to be feeling more like a 90 year old, is a pretty horrific experience. but i digress…
i’m due to be tested for cushings in a few days time with the low dose dexamethasone, and i know this is awful to say, but i’d jump for joy knowing what’s going on with my body at last.
although i know i have pcos and an underactive thyroid, i just know that there’s something else going on with me, and unfortunately my consultant just won’t listen to me.
my social life has disapeared, i just feel too goddam ill, not to mention my incredibly unsupportive boss, who seems to want to make my life a living hell because i’ve had to take a lot of time off work- she even screamed at me until i cried when i collapsed at work one day. i’ve actually taken to hiding in the toilets in the afternoon to have a nap, and to regroup, just so i can get through the day. never mind that i’m a 22 year old who has gained 7 stone in under a year- it’s hard to feel great about myself!!!
anyway, hopefully one day i’ll find out what’s wrong with me
this was me last year:
and this is me now:
quite a difference huh?! and apologie for the poor fashion sense!
anyway, wish me luck, and and my best wishes for everyone going through diagnoses/treatment for any health issues, we’ll get there in the end 🙂
May 5, 2026
MaryO
Adrenal
adrenal gland, Adrenal insufficiency, blood, cancer, Conditions and Diseases, cortisol, cushing's syndrome, dex test, dexamethasone suppression test, glaucoma, Health, heart palpitations, intolerance to cold, migraines, orthostatic hypotension, Ovarian cancer, tachycardia, weight
The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia
I have just been diagnosed with glaucoma, and I possibly have subclinical Cushings … though I am small (4’10”, 99 pounds), I’ve realized that I have put on an average of a half-pound each month since July of 2012, after years of being fairly stable with my weight.
Also for years I’ve had heart palpitations, a life-long intolerance to cold, and orthostatic hypotension and tachycardia, as well as migraines. I had to push my gyn/onc to get a referral to a endocriniolgist — every doctor seems to think that a “benign” adenoma is an okay one that can be left alone.
Have done an adrenal insufficiency test and will be doing the dex test (two 8 am blood draws) this week.
May 5, 2026
MaryO
Undiagnosed
Arkansas, bloodwork, bruising, Buffalo hump, Conditions and Diseases, cushing's syndrome, depression, fatigue, hair loss, Health, libido, night sweats, sleep doctor, Stretch marks, Weight gain
I am a 32 year old female in Arkansas.
I have not yet been diagnosed with a disease but highly suspect I have Cushings. Over the past 3-4 years I have developed a Buffalo Hump, lost my libido, have drenching night sweats every night, fatigued during the day, tire easily when I excercise, my hair is thinning rapidly, suffer from periods of depression, bruise easily, heal slowly, and scar easily. I also have these little bumps on my arms and torso as well as stretch marks on my sides and upper thighs. I have never had a weight problem but the past couple of years I have gained 70+lbs and have had little luck losing weight and/or keeping it off.
Every time I go to the doctor they do a blood panel and always come back with the same answer “Everything is fine”. EVERYTHING IS NOT FINE!!!!!!!!
I recently was referred to a sleep doctor and during my appointment yesterday I told the doctor I feel like I might have Cushings and need to see an Endocrinologist. I finally got my referral and hope I am on the road to a diagnosis of some sort and an explanation for what is going on with me!
May 5, 2026
MaryO
Adrenal, Cyclic, Pseudo-Cushing's
ACTH, adenoma, Adrenocorticotropic hormone, anxiety, Bone, bone scan, brain, Buffalo hump, Conditions and Diseases, cortisol, CT scan, cushing, cushing's syndrome, DHEA, fatigue, fluid retention, Health, heart palpitations, irritability, Magnetic resonance imaging, moonface, MRI, night sweats, NIH, pituitary, weight
Hi!
I have provided a timeline of my Cushing’s related tests and symptoms.
Symptoms since 1994
Diagonsed: August 2012
Surgery: August 2012
Other Key Dates/Symptoms:
1993-2009: NIght sweats, heart palpitations, difficult losing weight, anxiety
2010:
+Kaiser Acupuncturist checked DHEA levels. Lowest she had ever seen.
+Referred to Kaiser endocrinologist (Dr. Lee)
+ACTH Very low
+Cortisol moderately high
+Abdomen CT showed 2 cm growth (Mis-read as possible cancer by radiologist)
+MRI showed possible small brain adenoma
+Referred to NIH
+Labs normal
+Reviewed MRI/ CT. CT showed 2 cm adenoma (benign) and no brain adenoma. (They said Kaiser overead the MRI and were sure about the CT not showing any cancerous characteristics)
+Initial diagnosis: Psuedo Cushing’s and revised to Cyclical Cushings
2012
+Increased symptoms. Weight gain, hump, fluid retention, moon face, fatigue, irritability
+NIH follow up showed high cortisol (confirmed 2X), low DHEA, low ACTH
+Suppression test confirmed Cushing’s Syndrome
+Bone scan showed 25% bone density loss in 3 years.
+Diagnosis: “Sub Clinical” Cushing’s Syndrome (borderline…I don’t “look” like Cushiing’s unless you compare before and after photos.
+Repeat CT confirmed benign 2 cm adenoma (no growth)
+Surgery scheduled for Aug 27, 2012. Re-scheduled for Aug 29, 2012.
Hope this helps!
Feel free to contact me,
MaidM
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.
May 5, 2026
MaryO
Undiagnosed
arthritis, Conditions and Diseases, Health, Medicine, Musculoskeletal Disorders, Support Groups
hello Iam so glad to have found this site
I am only starting out on my journey and now I wont feel so alone I am 56 married for 39 years with 3 children and 4 grandchildren I have not being well for 15 years Iam being treated for arthritis at the moment but Iam not sure any more about this.
I have alot of the symtoms of cushings which I was putting down to arthritis and side effects of meds till i got hump and my doctor send me to endo look forward to getting to know people and therestories thanks to mary o and evebody involved in setting up the site
May 4, 2026
MaryO
Adrenal Insufficiency, Adrenal Surgery, Diabetes, Pituitary, Treatments
Adrenal insufficiency, anemia, bilateral adrenalectomy, BLA, Carcinoid, Conditions and Diseases, CSF leak, cushing's syndrome, diabetes, digestive, fatty liver disease, Health, Magnetic resonance imaging, Pituitary adenoma, transsphenoidal, Vitamin D Deficiency
I had 3 transphenoidal surgeries 1 month apart in 2003. I had a csf leak and when it was repaired the pituitary had become necrotic and I lost the whole gland.
They said that did not cure the cushings so I had a BLA in 2004.
I have had nothing but health problems since then. Diabetes, fatty liver disease, frequent adrenal insufficiency, severe anemia despite no periods, vitamin d deficiency, and other strange things.
They are now working me up for the neuroendocrine carcinoid tumor in the stomach or small bowel. It has been quite a road and I am not sure if I would do this all again if I could.
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