August 26, 2026
MaryO
Adrenal, Adrenal Surgery, Treatments
Adrenal, dry skin, hair loss, headaches, muscle ache, painful joints, Prednisone, split nails, surgery, weight
Was finally diagnosed in Feb of this year.
Had surgery mid March to take left adrenal.
Am still on 3mg prednisone daily. Lots of joint muscle aches, headaches, hair falling out, dry skin, split nails… sleeping a bit better but tired during day,can’t walk long or stand without feeling like I’ll hit the ground any minute.
Any weight lost right after surgery is back!
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August 24, 2026
MaryO
Pituitary, Pituitary Surgery, Recurrence, Treatments
depressed, eyes, glucophage, headaches, obese, periods, pituitary, pituitary surgery, remission, weight
Hi and good evening new here So im EvE7070 and oh my were do i start.
I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.
But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong
i even got a allergies to peanuts which I had never had a problem with before crazy right
So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland
So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest
I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again
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July 18, 2026
MaryO
Pituitary, Pituitary Surgery, Treatments
I was mid-diagnosed for about 5 years. Doctors that I had gone to for decades would prescribe me diet pills, told “brisk walking” (even though I walked about 12,000 steps every day at work), I was told to “put down the fork “… finally I was to meet a new doctor- the very first time I met her- she figured it out!
Then came blood tests and mri.
My neurosurgeon appointment was set for Nov. then I got a call that it would be October…. It was the end of September. Yay!! I was so happy someone figured it out!
First surgery didn’t get it all so it was done again. Veins were failing but I finally got to go home. 5 days later I was readmitted for my sodium levels being too low…. I told them my nose kept running- surgery #3- cerebral membrane leak- iv in my foot and a port installed…. and the spinal tap.
Again I got to go home. Was out of work for 11 mos. I was sooo tired. Went from 264 at original surgery to 109. That was in 15.
In the last 9 months I’ve been in the icu twice for adrenal crisis…. Nothing is getting better.
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July 12, 2026
MaryO
News Items, Pituitary, Pituitary Surgery
Australia, carotid artery, Conditions and Diseases, Health, Pituitary adenoma, Pituitary gland, surgery, tumor
He said she needed to start focusing on looking after herself a bit more in her long journey with tumours of the pituitary gland.
“I have a tendency to do too much for other people,” Mrs Dines said.
“It’s just me. It’s in me, it’s what I do.”
The altruistic devotion is central to her being nominated in the community spirit category in the 2013 Pride of Australia awards.
“There is no end to the depth of Kellie’s passion for people in need,” her testimony said.
“She inspires everybody she comes into contact with to be the very best they can be.”
Pituitary and pineal glands (Photo credit: Wikipedia)
Mrs Dines, 40, is the wife of Brad, mother of Carter, 10, and Hunter, 5, and has lived at Teesdale for two years after having spent her formative years growing up at Wallington and attending Geelong’s Matthew Flinders College. She spent 17 “hideous” years battling mystery ill health and receiving all sorts of diagnoses before the discovery of a non hormone-secreting tumour surrounding her pituitary gland, at the base of her brain.
The pituitary gland secretes hormones that influence the workings of many other glands.
She has twice undergone delicate surgery attempting to remove the tumour and now it is growing around her carotid artery.
Mrs Dines’ community devotions have ranged from volunteering at three consecutive Australian International Airshows to inspiring a Black Saturday bushfires appeal that generated two truckloads of food and goods for fire victims, and volunteering as state co-ordinator for the Australian Pituitary Foundation.
After having shifted to Teesdale, she started co-ordinating money-raising efforts for the community’s pre-school and primary school and ran money-raising events for a local single mum contending with breast cancer and a family that lost a child.
She said nomination in the Pride of Australia awards was humbling. “But it’s not why I do things,” she said.
Nominations in 10 Pride of Australia award categories close on Tuesday.
From http://www.geelongadvertiser.com.au/article/2013/07/12/369100_news.html
July 8, 2026
MaryO
Adrenal Surgery, Carcinoid, Ectopic, Golden Oldies, Other Diagnosis, Pituitary Surgery, Treatments
acne, appendix, balding, bilateral adrenalectomy, BLA, carcinoid tumor, depression, ectopic, Golden Oldie, hair, hirsuitism, irregular periods, Moon face, muscle weakness, optic nerve, petrosal sinus sampling, straiae, Stretch marks, weight
I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.
I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.
My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.
Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.
Update: May, 2007
It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.
For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.
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July 7, 2026
MaryO
Pituitary, Pituitary Surgery, Treatments
cortisol, cushing, Cushing Disease, cushing's syndrome, Health, June 2011, Magnetic resonance imaging, MRI, petrosal sinus sampling, pituitary, surgery, transsphenoidal, tumor, weight, Weight loss
Hi all!
I am a 24 year old little miss you was diagnosed with Cushing’s Disease in Spring 2010.
I did a ton of tests, including pretosal sinus sampling and MRI’s, and although images and direct location of the tumor were not possible, my doctors were able to confirm a pituitary origin for my cushings.
I had my first transphenoidal surgery in June 2011 and was finally off replacement cortisol by mid november 2011.
In august, as I began to tapper off my medications, I was FINALLY able to loose some weight, loosing 30lbs between August and December.
I stopped losing weight and began another downfall in my stupids between february 2012 until april, at which time my monitoring tests showed my cortisol levels to be again up around the same levels pre-surgery 🙁 so sadly I’m looking again into what my life entails with this Cushing’s having resurfaced 🙁
July 5, 2026
MaryO
Cancer, Pituitary, Pituitary Surgery, Thyroid, Treatments, Update
ACTH, Blood test, cortisol withdrawal, Dr. Van Gompel, headaches, IPSS, Mayo, nausea, pituitary, pituitary surgery, pituitary tumor, saliva, thyroid cancer, thyroidectomy, update, wean
hi there…
i had the pituitary surgery. They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1. They consider that a cure.
it is a very painful recovery for me and i am documenting each day.
The headaches and pressure in my head were so awful and painful but have now on day 6 subsided. They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12! The nausea was bad too. The cortisol withdrawal hasn’t been so horrible yet. They have me on a taper program of each week taking less.
The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft. He wanted a “home run”. I asked after if he got the home run and he said yes.
The whole Mayo experience was strange. You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent. The endocrinologist is the only one who calls back personally but I guess that is a lot. I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic. Things just fell into place there. As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning. A one stop shop. I was scared and there alone but got through it.
The next 3-12 months will be difficult. I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr. I just need to check myself and get off them as soon as I get these headaches under control.
Mary, I’d like to stay active on your site. I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure. Please let me know the best way I can do this and you may post this if you’d like. Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.
I just know I am grateful to you and this site.
Lili
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July 2, 2026
MaryO
News Items, Pituitary, Pituitary Surgery, Recurrence, Treatments
Alopecia, Asthma, depression, dyslipidaemia, headaches, hypertension, obesity, Osilodrostat, Pasireotide, Sleep apnea, transsphenoidal
A 45-year-old female developed clinical and biochemical recurrent Cushings’ Disease 2.5 years after transsphenoidal hypophysectomy for 2cm pituitary macroadenoma.
Past medical history included Type 2 Diabetes mellitus, asthma, hypertension, grade 3 obesity, dyslipidaemia, depression and sleep apnoea. MRI showed residual pituitary tissue with left sphenoid sinus extension.
MDT advised repeat transphenoidal surgery over radiotherapy due to presence of a clearly visible surgical target. Neurosurgery was initially delayed at patient request. She commenced metyrapone, titrated to cortisol levels but this was poorly tolerated. Whilst awaiting neurosurgery, she developed pituitary apoplexy with right sixth nerve palsy and superior quadrantanopia. MRI showed reduced tumor volume but she became progressively hypercortisolaemic. MDT discussion felt redo transphenoidal surgery no longer appropriate but unfortunately, the patient declined radiotherapy.
Over the next 5 years, her metabolic control deteriorated, managed with intensive insulin regime, GLP-1 agonist and SGLT2 inhibitor, anti-hypertensives, statin, Levothyroxine for central hypothyroidism, prophylactic Rivaroxaban for thromboembolic risk and intermittent Metyrapone.
Despite this she developed worsening alopecia, arthralgia, myopathy and NAFLD and became wheelchair dependent.
Options of pituitary radiotherapy, bilateral surgical adrenalectomy or ablation were discussed. Bilateral surgical adrenalectomy was accepted by the patient but delayed due to Covid-19 pandemic. Whilst awaiting adrenalectomy she developed worsening headaches and superior quadrantanopia. Repeat MRI showed increase size of pituitary adenoma with supraseller extension. She commenced Pasireotide after MDT discussion but attended A/E with worsening headache, visual field defect and ongoing cushingoid symptoms after 3 doses. Repeat MRI scan showed no significant tumour growth or apoplexy and MDT recommended Osilodrostat, which the patient is awaiting.
Conclusion: This challenging case highlights the alternative options of managing resistant hypercortisolaemia in an individualized approach and the difficulty explaining complex treatment options with patients.
Adapted from https://www.endocrine-abstracts.org/ea/0094/ea0094p245
July 2, 2026
MaryO
Diabetes, PCOS, Pituitary, Pituitary Surgery, Treatments
back pain, Blood test, Buffalo hump, CT scan, cushing, cushing's syndrome, diabetes, endocrinologist, Endocrinology, Facebook, hair, moonface, pain, PCOS, pituitary, Polycystic ovary syndrome, scoliosis, surgery, Washington, Weight gain, X-ray computed tomography, X-rays
Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.
About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.
When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.
My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.
Thank you so much for reading my bio!
June 30, 2026
MaryO
Adrenal, Adrenal Surgery, Cancer, Golden Oldies, Other Diagnosis, Treatments
24-hour urinary free cortisol, Adrenalectomy, Blood pressure, Blood test, breast cancer, breast reduction, cortisol, CT scan, dexamethasone suppression test, diarrhea, fatigue, fibroids, hysterectomy, mastectomy, Multinodular adrenal hyperplasia, nausea, pain, periods, Prednisone, Premature Ovarian Failure, UFC, weight, X-rays
A Golden Oldie
~~~
Hi! My name is Robyn and I am a 48 year old wife, mother, daughter, sister, aunt, 1st grade teacher and a recovering Cushing’s patient.
My story is so very similiar to the others on this site but because they helped me so tremendously, I felt that I needed to add my own. Until I was 40 I was extremely healthy and extremeley thin (92-100lbs. on a 5ft. frame) My menstrual cycle had been like clockwork. I had normal periods every 26 days. I had had no problem getting pregnant and was the proud mother of a daughter and a son. I had never had PMS or pain with my periods.
This all changed around 40. My periods started becoming very irregular, I had severe cramps, crazy PMS (my husband said it was like Linda Blair with her head spinning around), and heavy bleeding. I was diagnosed with fibroid tumors. Dealt with that with hormones but by the time I was 45 I had Premature Ovarian Failure and the pain had become incredible and the bleeding was almost to the hemorraging point.
I had a hysterectomy in July of 2007 (I was 45). One month later in August of 2007) I was getting out of my bathtub, slipped and fell and broke my acetabulum (hip socket). I spent 14 weeks non-weight bearing in bed and walking to the bathroom with a walker and in horrible pain until it was decided that I would have to have a total hip replacement. It was another 9 months before I recovered from that. By that time my weight had steadily increased. I thought it was due menopause that I had gone through as a result of the hysterectomy and not being able to walk much less exercise in the last year and a half.
In December of 2008 I decided to have a tummy tuck and a breast reduction because of the weight gain. In January of 2009, when I went for my post op appointment with my plastic surgeon, I was told that breast cancer had been found in the tissue removed in the reduction.
In March of 2009, I had a mastectomy. At that time, the plastic surgeon started my reconstruction by putting in a tissue expander. I had poor healing and all the incisions opened so I had the expander removed. Since then my weight has increased dramatically. I got the moon face, the red chest and neck, the buffalo hump and stomach that looks like you are 9 months pregnant.
During this time my primary care physician just left her practice with no forwarding address. I waited for several months to see if she would resurface in another practice and when she didn’t I had my oncologist recommend another internist. I saw her in Feb. 2010. She asked me what my biggest complaint would be and I told her it would be my weight gain in my stomach and how my face and neck looked.
My mother has Multinodular adrenal hyperplasia and I told my doctor that my mother thought I had Cushings. She told me she thought my mother was right. She did blood tests and called me to tell me that my cortisol levels were sky high and that she was referring me to an endocrinologist. She also had me do a 24 hour urine test and a 1mg. dexamethasone suppression test. Both were indicative of Cushings. The first time I saw Dr. Rolbands he looked at me and said I was a classic Cushings case and sent me for a CT scan. I had the scan and I had a tumor in my left adrenal gland. I went swiftly down hill with symptoms. The leg pain and fatigue became overwhelming.
By the time I had my surgery, I could hardly walk across the room and my blood pressure was 168/110 taking 2 blood pressure medications. I had my left adrenal gland taken out on June 29th, 2010. I am now recovering. Dr. Rolband is very pleased with my progress in 2 weeks. My blood pressure was 90/70 and took me off one medication. I have lost 6.1 lbs. and the pain in my legs had gone away. All very positive. I started weaning from the prednisone and that has not been pleasant. I went from 10 mg. to 7.5 yesterday and I had diarrhea, nausea, body aches and pains. I’m better than I was before the surgery but I’m ready to feel “normal” again.
Contact Robyn
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