September 23, 2026
MaryO
BlogTalkRadio, Golden Oldies, Interview, Pituitary, Pituitary Surgery, Recurrence, Treatments
BlogTalkRadio, Golden Oldie, interview, obese, pituitary, podcast, recurrence
A Golden Oldie
Robyn was diagnosed with Cushing’s Disease in 2004 and had 2/3 of her pituitary removed. This was after 8 years of going from doctor to doctor and thinking she was going to go crazy.
She writes: “Anyway, after my surgery in February of 2004 I had probably a good three years and then I slowly started feeling bad again. I am now going through what I did 8yrs ago. My endocrinologist doesn’t think that the Cushing’s is back because of my tests being borderline. He told me that he thinks I am obese and I need to have stomach surgery. I seriously cried for days and told him that I disagreed and I wasn’t going to give up…I need support in following through with the tests that I need to. Like I said I have been putting them off because subconsiously I am so worried that they will tell me that I don’t have the Cushing’s back and I will have to live like this the rest of my life. Tired of being so heavy and uncomfortably large, sweating to the point of dripping, aching all over and not having any desire or motivation to do anything.
I’m praying the tests come back showing that the tumor is back and they will go in and take the rest of the pituitary out.”
<!– Read Robyn’s complete bio –>
This interview was archived and available through BlogTalkRadio, or through iTunes Podcasts
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September 12, 2026
MaryO
Other Diagnosis, PCOS, Pituitary, Pituitary Surgery, Treatments
fatigue, muscle loss, painful joints, PCOS, Stretch marks, Weight gain
I’m 28 years old. I had a pituitary tumour removed at the start of this year.
My main symptoms were weight gain, bright red stretch marks, joint pains, muscle loss and fatigue.
I was originally diagnosed with PCOS, but when diet and exercise caused no improvement I kept looking. Once the stretch marks appeared I was referred to an endocrinologist who conducted urine and blood tests. My cortisol levels were double the normal level. I was then referred to a surgeon who ordered an MRI and found the tumour.
The tumour was removed.I was in ICU the first night then a week more in hospital. It took me about 3 months to recover from the surgery. I am now recovering from the disease itself which is ongoing.
I do physical rehabilitation 6 days a week as well as regular seeing a dietitian, psychologist, endocrinologist, exercise physiologist and hormone specialist.
I’m hoping to return to work next year, which will be about a year after my surgery. I believe the disease has manifested for many years.
I think the perhaps the hardest part of the disease is the time it takes to get a diagnosis. I hope my story can help others get their answers sooner.
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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!
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