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Amy (spunkybluecat), Pituitary Bio

June 29, 2026

MaryO Golden Oldies, Menopause, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , 1 Comment

A Golden Oldie from July 11, 2011

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Hello, my name is Amy.

I was diagnosed with Cushing’s last November and had surgery to remove the pituitary adenoma in March.

It took me FOREVER (over 3 y) to get a diagnosis. None of my doctor’s would really listen. I was SO frustrated but kept on pushing because I KNEW something wasn’t right. Pre- surgery I had excess hair (facial+), weight gain (abdominal), stertch marks, fatigue, very irregular menstrual cycle…..Now that I’ve had the tumor removed I still have problems.

I’m hoping that some of you will help me to answer those questions/problems. My facial hair has slowed down, I’ve lost over 65 pounds in 3 months, I’m going through menpause now (I’m 36yo), my hair is starting to fall out, I have NO energy/fatigued all the time, some days I wake up OK and others I wake up vomiting or very unsteady like I’m going to pass out if I’m on my feet for too long. I am very depressed.

My life has fallen apart. My marriage is over, I have had to move in with my mother, I am unemployed, and I can’t do the fun things that I should be able to do with my 8yo daughter. I have no friends and my family is not supportive at all. They say I just need to get off my *ss. I’m tired of people blaming depression, laziness, etc. I want my life back.

I need help and don’t know where to turn. I hope that I can learn what I need to do solve these problems and meet some people who can send some sunshine my way.

Liberty, Undiagnosed Bio

June 25, 2026

MaryO Golden Oldies, Undiagnosed , , , , , , , , , , , , , , 1 Comment

Liberty is not yet diagnosed, but possibly has a co-secreting tumor that is secreting prolactin and cortisol. She was told she might have a small tumor on her pituitary gland.  Her bio was last updated 6/17/2008

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My first symptom was that I was still lactating after a year of not nursing. I had looked on the computer to see if that was normal. I found a sight that said it was so I didn’t give it much more thought.

Then in July 2003 I was 5 days late having my peroid which has always been normal. Every month since then I have either been late or skipped it all together. I also started getting really bad acne and gaining weight.

The worst symptom is what I thought was PMS. It starts two weeks or so before my period and lasts about two to two and a half weeks. It is so bad I can hardly function. I can’t keep my house clean, I can’t bring myself to cook dinner, I lose my patience with my kids very easily. Then it goes away and just about the time I get back into the swing of things, it starts all over again.

So, I went to the doctor about 3 weeks ago and she said she would put me on birth control to regulate my periods. But first she wanted to run some blood work. So she did the blood work and two weeeks later I was told that my prolactin was high and that I might have a small tumor on my pituitary gland.

Then I was scheduled with a endocrinologist in February. I am going nuts waiting for this appt. I have been on the computer alot. I happened across a website for a pituitary unit in Oregon. I emailed the Dr. and he emailed me his # and told me to call. So, I did. I told him my symptoms and he asked me a few questions. He said he thinks I have a co-secreting tumor that is secreting prolactin and cortisol.

So, I just have to wait now.

Kirsty (kirstymnz), Ectopic Adrenal Bio

June 25, 2026

MaryO Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, Ectopic, Golden Oldies, Lung Surgery, PCOS, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Another Golden Oldie, Kirsty’s bio was last updated 08/18/2009.

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I don’t really remember when it first started. It was probably about a year ago when I think about it.

I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.

As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.

The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.

Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.

My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.

As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.

I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.

The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing’s syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.

The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing’s.

The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)

This test concluded that my Cushing’s was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.

lungsTogether they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.

After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.

The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.

Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.

The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).

After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).

I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.

However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.

My Cushing’s disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).

There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.

Michael B, Adrenal Bio

June 24, 2026

MaryO Adrenal, Adrenal Surgery, Golden Oldies, Male, Nelson's, Pituitary Surgery, radiation, Treatments , , , , , , , , , , , , , , , 1 Comment

Michael B’s Story. Michael B was first diagnosed with Cushing’s in 1979 and had a bilateral adrenalectomy in 1980. In 1983 the symptoms reoccurred and he had a third adrenal removed in 1983. He then developed Nelson’s syndrome and had his pituitary (plus tumour) removed, followed by another pituitary surgery then 5 weeks of radiotherapy.

This Golden Oldie was last updated 06/07/2008

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I was diagnosed with Cushing’s in late 1979 and had a bilateral adrenalectomy in 1980. After the operation my weight reduced and my blood pressure stabilised to normal. In 1983 the symptoms re-occurred and I had a third adrenal removed in 1983 (this was found by the use of radioactive cholesterol isotope injection).

The anterior pituitary is the anterior, glandu...

The anterior pituitary is the anterior, glandular lobe of the pituitary gland. (Photo credit: Wikipedia)

After this I felt good until 1987 when I developed Nelson’s syndrome and had my pituitary (plus tumour) removed. Again all went well until an MRI scan discovered that the tumour had returned.

In 1998 I had this removed followed by 5 weeks of radiotherapy in the hope of preventing a further growth of this tumour. To date and several MRI’s later it seems to be working.

In the early days my symptoms were all physical e.g. moon face, high blood pressure excess weight, abdominal striae, localised headache, I never suffered from depression.

I write to reassure people that it is possible to live a normal life after Cushing’s. Keep up the work on the website. I did not have the luxury of so much information. My information came from trawling through my local library for information for, like others, I got little information from my doctors.

Hannah, Pituitary Bio

June 24, 2026

MaryO Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , , , , , Leave a comment

A woman who piled on 10 stone due to a rare condition has shed the weight in just two years, thanks to a daily exercise routine.

Hannah Mai, 37, was diagnosed with Cushing’s disease, a hormonal disorder caused by high cortisol levels, in October 2020 after gaining 10 stone in just two and a half years.

Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.

In April, 2023, Hannah was taken off her steroid medication and was determined to shed the 10 stone she gained due to the disease – who weighed 20 stone 5lbs and was a size 26.

Through a combination of high-protein meals and daily pilates sessions, Hannah impressively slimmed down to 10 stone 4lbs, fitting into a size 10, all within two years.

Hannah, from Coventry, Warwickshire, said: “Once I started losing the weight, I just kept going.

“It isn’t easy, you really have to push yourself, and focus on who you want to be and think about who you want to be.”

When she turned 30, Hannah noticed she started gaining weight and went from nine stone to 16 stone in a few months. She revealed that despite frequent doctor visits, she was constantly asked if she was expecting or if her weight gain was due to hormonal changes.

Hannah shared: “I was always around nine stone, but I noticed how I started to gain a bit of weight. I knew there was something wrong with me, but people around me thought I had changed my diet and asked if I was eating more.

“I was asked if I was pregnant six times, and told that my weight gain could be caused by hormones. I went up to 20 stone at my heaviest.”

In October 2020, over two years since her weight began to increase, Hannah woke up one day with a hunched back.

After a quick Google search suggested Cushing’s disease as a possible cause, and noticing the other symptoms including weight gain, she immediately sought medical advice.

She was referred to University Hospital Coventry & Warwickshire, where an MRI scan and blood tests confirmed she had Cushing’s disease.

Hannah added: “I printed off the list of symptoms and took them to my doctor, who then referred me to the hospital.

“There, I had an MRI scan and blood tests, which confirmed that I had Cushing’s disease.

“I was relieved but scared when I got the diagnosis. I had been saying for years that there was something wrong with me.”

Five months post-diagnosis, in February 2021, Hannah underwent brain surgery to remove the pituitary tumour causing the condition, and was put on steroids to manage her symptoms.

After battling with her health and spending two years on steroids to manage her condition, Hannah came off the medication as her health improved.

After she came off her medication, Hannah said she knew she was better and became determined to lose weight.

She said: “It wasn’t easy to lose weight whilst I was still on steroids, as soon as I came off them, I knew this was my body and I was a lot better.

“I really pushed myself, I worked super hard, cut out all sugar, cut out dairy, and gluten after I was diagnosed with celiac disease.

“I have a low-carb, high-protein diet with lots of vegetables, and I do pilates every day.”

Her commitment paid off as she impressively slimmed down from 20 stone to 10 stone within two years. She went from wearing a size 26 clothes to wearing a size 10 – back to where she was before Cushing’s disease.

Hannah said: “I am super proud of myself, I am always worried that the weight will come back.

“I feel so much happier. When I look back at myself, I just can’t believe I was that size.

“When I look back at old photos, I feel very sad about what happened to me, but it makes me think that I need to be proud about how far I have come.”

Adapted from https://www.mirror.co.uk/news/health/i-gained-10st-due-rare-35432462

Jackie (samsmom), Adrenal Bio

June 23, 2026

MaryO Adrenal, Adrenal Surgery, Cyclic, Familial Cushing's, Golden Oldies, Pediatric, Prader Willi Syndrome, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Jackie (samsmom) first started dealing with Cushing’s in her family when her youngest child was born in 1999.

Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well. 
Download from amazon.com: Mystery Diagnosis

Later at the NIH, the gene (PDE11A) responsible for Sam’s illness was found. Her father carried the gene as did her two sisters.

Sam’s doctor at NIH, Dr Stratakis has written several papers on Sam’s case including one that was published in April, 2008. For more on PDE11A or iMad, please see A cAMP-specific phosphodiesterase (PDE8B) that is mutated in adrenal hyperplasia is expressed widely in human and mouse tissues: a novel PDE8B isoform in human adrenal cortex.

Jordan, Jackie’s oldest daughter, has recently had her adrenals removed. She had one removed laparoscopically and the other was an open adrenalectomy.

Listen to Archived Interview from May 15, 2008

Jackie last updated her bio 10/12/2009.  This is another Golden Oldie.

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On march 22nd 1999 Sam was born 5 weeks prematurely, weighing in at 5 lbs 11 oz after a difficult pregnancy and delivery. Sam didn’t ever ‘look’ right to me. I had had two daughters prior to Sam and never felt such a feeling of unrest and anxiety about a baby. The doctors assured me there was nothing wrong with Sam. She had enormous chipmunk cheeks and was bright red. She was very agitated and struggled with feeding due to the size of her cheeks. It was determined within the first 24 hours of life that Sam had “breathing difficulty” and trouble keeping her tempeture up. She was sent to the NICU the evening of her birth.

Around day three… Sam’s ‘pediatrician’ told me that Sam was having high blood pressure readings. A neonatologist was called in to observe her. Her pressures remained high and she was immediatly prescribed high bp meds. After weeks of increasing and adding additional doses Sam still had high bp. On day 18 she was transfered via ambulance to Seattle Children’s hospital.

She was catherized and given a 24 hour urine free cortisol test. She had necrosis so bad in her diaper area she almost lost concousness when her diaper was changed. Her bum was so raw and bloody it bleed through her plastic diapers down her leg. They lay her under a heat lamp and managed to make contact with the bulb to her skin. She got a 3rd degree burn. The 24 hour urine test was botched in the lab. Her hematicrit was 18. They sent us … home. On two different kinds of bp meds and a tube of desitin.

Sam was better off at home. We had a bp machine and monitered her every 4 hours. She was losing weight due to her feeding difficulties and she vomited anything she did manage to get down. Her bp slowly came down. We went to see an endo at about 4 weeks old who wanted to take blood out of her juglar vein for a blood test. All sam’s veins had collapsed at this point. I told him I would take Sam and jump out the window with her before I would allow the jugular blood draw. I left the building.

Over the course of the next month we realized we were on our own. Bill and I noticed that the bp was coming down so we slowly weaned her off the bp med and antibioltics(for the necrosis). Sam was rarely awake at this point and very frail and pale. We felt the meds were doing her more harm than good. We saw countless doctors who all came to the same brilliant conclusion; all these odd symptoms were simply due to her prematurity. Her serum cortisol at this point was 45. The so called doctors said she was under a great deal of stress, and dismissed the idea of Cushings syndrome. Because babies (even children) don’t get Cushing’s… after all.

At about 3 months Sam’s features started to normalize. The puffiness went slowly away… she began to feed better and the necrosis healed. Slowly she started growing but still vomitted most of her feeds. She screamed relentlessly and slept infrequently and for short bits… I sleep upright in a chair with Sam on my chest the first 9 months of her life. Sam awakened hysterically ever 2 hours on the dot. This continued until she was four years old.

Sam was slow to walk, speak, roll… she was small and thin and very crabby all the time. We trudged on… my other two daughters nearly invisible due to the needs of Sam. I knew Sam was sick. I knew there was something wrong. My husband diagreed with me. He told me to trust the experts. So reluctently, I did. Sort of.

At 19 months of age Sam, still waking every two hours, would be drenched with urine from literally head to toe. This was very strange. I ended up putting towels under her because I ran out of sheets. I slept in a cot in her room. With 10 days… Sam had gained 10 lbs. She was BRIGHT red and agitated. Her bp went back up… her appetite was vorocious. The only thing that soothed her was me rocking her back and forth and patting her back. She fell asleep to Ryan Adams “Stars go Blue”…she would scream until I repeated the song over and over and over…. She would hold her head and cry and cry… finally to sleep for two hours… the repeat.

We brought her to a new endo who thought she had prader wili syndrome. I explained she had gained 10 lbs in 10 days. He might as well have laughed at me. He said she was obese and had behavior problems. He told me it would take 5 weeks to get the PW test results back. When we did it was negetive. Though her cortisol was 49. Stress, he said, stress. By then Sam had shrank back down to her present weight and her chipmunk cheeks were gone. SHe still woke up every two hours and demanded ‘her song’ to get to sleep.

When she was well enough, I flew Sam to Arizona Childrens Hospital and visited with an endocrinologist in Scottsdale. This is the first I heard about cyclical Cushing’s syndrome. No tests were ordered as Sam was asymptomatic at that time. She remained Cushing’s free for about 6 more months.

At around 31/2 years… Sam went into a particularly bad cycle. She was so sick she couldn’t stand up. She sat and cried and cried and cried. Nothing could console her but that damned Ryan Adams song and her black cat Max. She gained 15 lbs in as many days. She got a face full of acne and stretch marks on her stomach. She rocked and cried and held her head.

About this time I posted my first post on this board. I was desperate, angry, terrified and sick with grief. I KNEW Sam was going to die. My posting was answered by the angels that are here… all agreed Sam had Cushing’s, all gave me strength and validated me… all were rooting for Sam. At the doctor the next day she had a urine test that showed protein in the urine. i was told to go to Children’s Hospital immediatly; Sam was diabetic. Huh?

I went in to the hospital raging. I demanded the endo on call…. I shouted at the fellow. I snapped at the nurse…. I kicked the bed out of my way….. and in walked Dr. Dan Gunther. Sam was screaming, I was screaming… he was calm. He sat down. He listened… he nodded…. I went on and on about Cushing’s and the board and the high bp and the acne and the necrosis and no one caring…. and the ‘Stars go blue’… for 2 solid hours. He took notes. I showed him pictures… I showed him what she had looked like 5 days prior…and 10…. He ordered an immediate ultrasound of her adrenals and sent us home with 3 jugs for 24 hour urine cortisols.

Dr. Gunther called me the next day (Thanksgiving) to see how she was. He told me he would help her. He told me he would help me. He told me “no one is going to die.”

Sam and I went to war with the urine tests. She was a champion. She was excessivley urinating at this point (and not night trained anyhow) so I woke her every hour to pee in a little bed pan. Soon Sam was standing up on her little bed, peeing in her sleep and hitting the repeat on her trusty CD player so she drift back off to her song.

Sam’s first 24 hour urine came in a 2900. Dr. Gunther admitted her for testing. He contacted Dr. Stratakis at NIH and followed the testing protocal recommended by him. All of Sam’s tests reveiled a Cushing’s diagnosis. On day 3 Dr. Dan told me there was some suspicion among the hospital that Sam had been given mega doses of steroids and was being posioned. I looked at him as though he had gone mad. He said that some docs felt I was giving her steroids. They thought I had Munchausen by proxy. I assaulted Dr. Dan verbally and he took it. Then he told me that he disagreed with them and kept Sam another day to prove that Sam’s adrenals were the ones making the steroids, not Sam’s mother.

The tests showed that Sam’s adrenals were in fact making the cortisol. I was cleared of any wrongdoing.

Dr. Dan sent us to NIH in February of 2003. Sam was not in a cycle at that time. Sam still tested positive for Cushing’s throughout 2 grueling weeks of testing. On the way home on the plane… Sam started shouting for her song… then she started eating all her food…. then my food…. then tried to get the guy’s next to me food…. I turned on “Stars Go Blue” and just ***knew*** she was starting a new cycle.

Within 10 days of arriving home and 3 more 24 hour urines it was determined that Sam was in a cycle. She gained 12 lbs. Dr. Stratakis told me via phone that she would need to have the bilateral adrenalectomy as she had tested positive for PPNAD. But first she would need to show high numbers AT NIH. They could only schedule us back the end of March… for the first time I prayed that Sam would STAY in the Cushing’s cycle…. Sam turned 4 on March 22, 2003. She got a guniea pig, a pony and twin kittens. She was too sick to care.

On March 28th we arrived back at NIH. Sam was coming OUT of the cycle rapidly, however Dr. S was very startled by the difference in her appearence.. I was insane with anxiety that she would have low numbers and be denied surgery. But my Sam pulled if off…. her 24 hour urines were around 500…. a little lower each day. Dr. S could actually WATCH Sam could out of her cycle.

Sam had a BLA on April 8 2003 (Harvey Cushings b-day and Cushing’s awareness day). Her surgery was successful. She stayed in the ICU for 16 days. 3 of those on an epidural for pain management. She was brave and strong and happy. She was all bubbles and smiles…. and didn’t have so much as a tylenol when the epi came out.

In Summer of 2005 the Discovery Health channel contacted me regarding a new show they were producing called “Mystery Diagnosis”. I agreed to tell Sam’s story along with Dr. Dan who had become one of our closest friends. Our show aired in November 2005.

In September 2006 Dr, Stratkis contacted us and told us he had found the gene responsible for Sam’s illness. Her father carried the gene as did her two sisters. I did not. Both of Sam’s sisters went back east for testing. Each were negative for active Cushing’s Syndrome.

In April of 2007, my eldest, Jordan (15 then) was back at NIH. She had had a 60 lbs weight gain during the school year. I knew what was happening. Dr. S’s tests confirmed it. Jordan had her left adrenal gland removed in October of 2007. There were complications and only one gland could be taken at that time. She recovered from that surgery within 2 weeks and we arrived home October 11, 2007. I recieved the devestating news that Dr. Dan Gunther had passed away. His death ruled a suicide.

During Christmas break Jordan began to get sick again. Her weight increased and her bp and sugars rose. I took it upon myself to find an endocrinologist and surgeon at Stanford University Advanced Cancer Center willing to preform her unilateral adrenalectomy. Dr. Jeff Norton preformed an open procedure and Jordan has recovered nicely. She has had little relief from Cushing’s symptoms and is still unable to go to school. Every day is a baby step for all of us. My life is a maze of pills 3 times a day for 2 kids at 3 different times. Forever.

Jordan and I will travel to NIH the last week of May 2008 for post op/6month testing. I am praying she does not have an active Cushing’s tumor on her pituitary.

I often wonder what happened in my other lives that dealt me such a tragic hand… whatever it was I hope it was fun. Sometimes I pretend I am a character in a Robin Cook novel… it isn’t that far of a stretch.

I miss my friend Dr. Dan everyday. My heart still aches whenever I think of him. I may never get over his death.

As I type this Jordan has just come in from a pedicure with her middle sister and Sam is watching Scooby doo… I can hear Sam’s CD still playing upstairs where she left it on… I swear to God it’s playing Ryan Adams “Stars Go Blue”.

 

Jackie and Jordan were the subjects of a Live Interview in the Cushing’s Help Voice Chat / Podcast series May 15, 7:30 The topic was Cushing’s in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist.

Listen to CushingsHelp on internet talk radio

Melissa, Pituitary Bio

June 22, 2026

MaryO Pituitary, Steroid-Induced , , , , , , , , , , , , , , , , 1 Comment

I was diagnosed with Cushing’s Syndrome about 4 yrs ago at 40 yrs old if my terrible memory serves me right.

I was told it was due to the steriods my Neurologist prescribed for Trigeminal Neuralgia and other severe facial pain. I was 110 lbs before the weight gain which ended up leaving me somewhere over 200lbs.

I had the moon face, buffalo hump, fluid retention, hair loss, blurry vision, thinning skin, confusion, anxiety, depression, terrible back pain, skin eruptions, hot flashes, and exhaustion etc. I struggled to stay awake and would fall asleep mid sentence.

The back and hip pain were so intense I couldn’t walk on my own so I had to use  a walker for over 2 yrs. Sometimes I still have to use it. I needed help getting to the bathroom. I was to weak to stand up in the shower. I was in bed 95% of the time. I was sick for a couple of years before my diagnosis.

Once PROPERLY diagnosed after many Drs made me feel as though this was all in my head. I was finally put on a long steroid taper, potassium and vitamin D. Fast forward 4 years after being told I had Cushing’s I am still debilitated by some of the syptoms.

Though I was told in the ER that my pituitary gland has started working again I am extremely weak and in pain. So much so I rarely get put of bed unless it’s for a Dr’s appointment. I have lost over 50 lbs but am left with purple stretch marks on my upper arms, breasts, stomach and hips. Also the skinny arms and legs with a fatty midsection. I am so frustrated with my body not allowing me to live a normal life.

Hopefully someone here can help me with some way to fight the fatigue, lethargy, libido and hot flashes that still remain.  I am taking  magnesium and vitamin D. and several other medications for a variety of symptoms but nothing in particular for the last symptoms I mentioned.  Is there anything one can do to have more energy? I become out of breath just walking across the room.
Many prayers and blessings to those suffering from Cushing’s.

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Joseph (joeysauce), Pituitary Bio

June 19, 2026

MaryO Male, Pituitary, Pituitary Surgery, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Hello everyone. My name is Joe. I’m a 23, soon to be 24 year old male who is (hopefully) in remission from ACTH-dependent Cushing’s disease and two transsphenoidal surgeries.

I’d like to say my journey all started back in November of last year. Though, the past year has been a stressful, anxiety filled year for me with a roller coaster of it’s own. I was working full-time as a web designer at a web firm down the block from me for a little over a year, but was just getting so sick of the grind. I was also dating a younger girl for about 2 years up at this point, who had just left for college last August. Thinking that I was finally going to have a little more time to myself to make and save money and just freedom in general, I was proven very wrong. As soon as she left, the separation anxiety hit me like a TON OF BRICKS. I could hardly sleep, go to work, or even function. I knew the first thing I needed to do was free myself of the miserable grind of work and get back to freelance work. I told my job I was leaving and actually had an opportunity to do some other work with my uncle across the country decorating malls for the upcoming holidays as soon as my two weeks approached. It was a nice break and a good way for me to get away and experience some new things, like my girlfriend was doing. When my girlfriend first went away, I started taking Valerian Root to help me sleep and have been taking St. John’s Wart for about a year and a half to keep the anxiety as it’s lowest. I decided that when I get home from this trip, now that I’ll have a MUCH more free life, that I’d like to cut out all these vitamins that I’ve been taking for years to help with my skin, health and anxiety. Like Fish Oil, Vitamin A, E, C, Multivitamins, Probiotics, etc. I wanted to come home and have an awesome natural routine of exercising, working, and juicing. It sounded perfect. Make money, get fit, stay healthy and feel good. As the end of the trip approached, I was pretty much finished with all the vitamins. We traveled for about a month and a half and was home just in time for Thanksgiving. My girlfriend was home then as well, so it was good to see each other again finally. We were in touch as much as we could be when we were both away and decided to keep things going.

Here’s where things started to change. One of the FIRST things my mom said to me when I got home was “Wow, your face looks puffy and swollen.” I actually agreed and said it’s probably this stuff that I decided to stop taking called “hyaluronic acid”. It’s supposed to make your skin more supple and moisturize from the inside out. I figured that’s why my face was looking that way. I JUST started using it too. As the weeks went on, I noticed that there was a prominent redness in my cheeks as well. My cheeks were usually red like this, and I always thought I had Rosacea, but noticed that they were now red the whole day long, and I could almost see where the redness kind of cuts off. I didn’t pay much attention to these signs, but still was a little concerned.

As the holiday’s approached, I didn’t really get a chance to start working out or running or anything that I planned to do now that I was working home. I was gaining a little bit of weight in my face and my tummy, but just blamed it on being lazy. My girlfriend noticed and would tell me that I’m getting chubby and looking different. It was getting pretty annoying at this point hearing everyone saying that I’m puffy and chubby looking. I then started to work out a little and was running as much as I could outside, even though the winter was approaching and it was getting harder and harder to run. I really wasn’t seeing much progress and even started to diet pretty hard with veggies. The crazy part is that I’ve ALWAYS been such a thing HEALTHY person. Always juicing veggies, always drinking water, always taking vitamins, very athletic, etc. It was crazy that I couldn’t get rid of this belly weight or get my face to slim back down.

This is when the weirdest thing happened…The stretch marks. I began to freak out. I saw these ugly purple lines on my inner thighs and was really confused. I thought…”How can someone my size get marks like this…am I exercising too much?” This was around February, and my girlfriend came home on another break and I remember one morning her mother made a comment and said “Wow, your face is so puffy and red, maybe you’re allergic to something, you look so different” This is when I finally decided that I needed to see a doctor. I decided to see an allergist to figure out why my face is so red and bloated looking. We did all kinds of allergy tests just to find out that I’m allergic to most environmental allergens. In between visits, I was doing my research. I started to Google things like “stretch marks inner thighs” and eventually came across the word “Cortisol”. Then Googling Cortisol, I eventually came across “Cushings”. I started to read the symptoms and began to notice that the majority of them were exactly what I had. The “moon face”, the “striae”, the “central obesity”. Then I realized how bad my sleep was over the passed few months. I thought it was just me being anxious about work, because I would wake up VERY early in the morning and wouldn’t be able to fall back asleep, so I would just get up and make breakfast and hop on the computer. Then I remembered the headaches I’ve been getting, or how tired during the afternoon I’d be. I was starting to make sense.

So one of the visits with allergist, I figured I’d mention the research I was doing. I asked the doctor if he was familiar with the disease. He said he definitely is. I showed him how different I looked a few months ago, and showed him my stretch marks. He was pretty shocked to see, but said it could just be from just eating bad and not exercising enough. I asked him if he could get me a blood test to check my Cortisol anyway. He said absolutely and sent me to a lab a few blocks away. I was very much expecting to see high cortisol levels. Like a fool, I went right after my appt with him, so the blood was taken around 12PM. I didn’t realize then that cortisol should be drawn around 8AM, but anyway…

The next time I came in to see him, he gave me the results. He said “You wanted to know if your Cortisol was low, right?” I said “No, I wanted to know if it is high.” He said “Oh…well, yes, they are a bit high.” He did mention that the RX said for me to have them taken in the morning and was kind of mad that the nurse didn’t notice that and say to come back in the morning. He said they could be high because of the time of the day and maybe the stress because of what I thought was going on. I knew now that I had to take these results to an endo.

This is when I started to mention things to my parents. They knew I was seeing the allergist and I have already talked to them about the cortisol and cushings, but I didn’t really get in depth. Once I had this blood taken, I knew I had to let them know what I think is really going on. I explained that the disease is caused by a tumor in the brain, or in your adrenal glands and they thought I was talking crazy. I was looking for local endos and found one not too far from me. When me and my mother first met with him, I knew instantly I wasn’t going to like him. It seemed I had to introduce myself before he even said anything. When I explained what I thought was going on, having Cushing’s and all, he said “You don’t look suspicious of Cushings at all.” He mentioned that the disease is VERY rare and that he has only diagnosed it about two times in his career. He looked my stomach, the back of my neck and said that when people have moon face, you usually see fatty deposits by the side of their eyes. As much as I didn’t want to hear I have Cushings, I wanted a solid answer to what is going on. He didn’t even ask to see the stretch marks when I mentioned them. He said, “Yes your cortisol is high, so we will do further testing.” I took home the urine test and also had a few blood tests done. Very anxious at this point, a few days passed and we came to see him again. Just as I thought, very high cortisol levels. He seemed very shocked and pretty much stated that Yes, I do have Cushings. He then wrote up multiple RXs for me to have done. An MRI, a CT scan, a chest scan. I was beginning to get pretty nervous. He explained how the disease is very complicated to diagnose and to find where the excess cortisol is coming from exactly. I was becoming very knowledgeable at this point and knew it wasn’t going to be an easy process.

Things started to get a little ‘different’ around the house and with my relationships. I’m actually a triplet and 1 of 3 children. My brother and I are very close, but not so much with my sister. My brother knew what was going on, but didn’t really know much about the disease. I would tell him and explain to him, but not really sure if he was even listening much. My dad was starting to get involved with things and becoming supportive of the changes. I was getting depressed with how I look and felt, and thankful my girlfriend was still away, even though I could’ve used her support…I just didn’t want her to see me like this. Things started to become pretty stale with her and my health was becoming more of a priority. I told her what was going on, but she hardly understood. So I started with the CT scan.

The doctor suspected the tumor to be found my in adrenal glands. Unfortunately, there was nothing to be found. The doctor then took some more blood work and realized that we should be looking in the pitutary. I then had an MRI done. At this time I receiving help from the whole family. My aunts and uncles were doing some research too, looking for better doctors. We live on Long Island, New York…so Manhattan is just a small trip away. It’s said that the best doctors around here are located in NYC. My mom found an endo by the name of Eliza Geer at Mount Sinai Hospital in Manhattan. We were lucky enough to get a appt rather quickly. We were still waiting on the results of the MRI at this point and recieved them the day of the appointment.

We took them to Dr. Geer. Now this Dr. is no ordinary endo. She actually is VERY familiar with the disease and runs a research study on Cushing’s on “Body Composition and Metabolism” in Cushings patients. Immediately, we knew were at the right place. She took a look at all the blood work and could most definitely tell that what is going on is definitely Cushings. She was very impressed with me that I was able to basically diagnose myself, and asked me if I was studying in the medical field, hah. She knew that there was no need for more testing, but now just to figure out the source. We gave her the CD with the MRI results but she had trouble getting the images to show up on her computer. She asked that if we could wait a bit longer, that we could meet the neurosurgeon that she works with, Dr. Kalmon Post, and we would look at the imaging together in his office. Feeling pretty good about the new doctor, we waited a bit in the lobby until they could both see me again. During the wait, I dozed off, but woke up to my mother and aunt talking to a lady in the lobby. She was with her son. After some conversation with her, they found out that he also had Cushings, and has been going through it for several years. He is 20, so a few years younger than me. My aunt asked if it was okay to exchange emails, so me and him have actually been in touch since our surgeries.

Anyway, it was finally time to meet both doctors. Feeling very nervous and anxious, we sat with them and he explained a little more about the disease, and the complications of the surgery, etc. He made a joke about my rosy cheeks and it actually made me feel a bit comfortable with him. He also said how the reversal of the symptoms almost seem magical. I was beginning to feel really good about him as well. He said that he does pituitary surgeries multiple times a week. He then opened the CD and we all looked at the images together. He explained that when there is a distinct tumor found, you will see it quite easily and explained how it would make the gland look in the scan. Unfortunately…we couldn’t find anything. He explained that at this point it could so small that it may never show up on the scan, so he never wants to go into the gland and begin any sort of surgery without being 100% positive that this is the source of the problem. He then explained that there is procedure that completely confirms where the source is…”Inferior petrosal sinus sampling” It sounded pretty strange to me, but I knew it had to be done. As soon as we left his office, we made an appt with Dr. Patel to have the IPSS done ASAP.

A week later we were back for the procedure. What a strange procedure…but all went well. The results came back telling Dr. Post that it’s time for surgery. I think it was another week or so later that we made the appt for my first surgery on May 6th 2013. Both anxious and excited, I was more that ready to get this done and over with. My surgery was late in the day, so I wasn’t in recovery until I think about 6pm and then in my hospital bed until about 8pm. I remember my endo coming to see how I was feeling, as well as my surgeon. Knowing that I was supposed to be feeling flu-like symptoms, I was honest and said that I felt okay. My parents spent the next few hours with me until they had to leave. Unfortunatly, I was not feeling any sort of crash, but just very uncomfortable from the darn nasal-tampon in my nose. The next day the blood results came back from after the surgery and my cortisol levels were still very high. Disappointing news, but pretty much expected. I think they were 77. Though, the doctors mentioned that a second surgery is common and that the levels may be high because of the time of the day. We still kept our fingers crossed that they would still be dropping over the next day. They did come down ALOT the next day, but not in a normal range. I was sent home on the Hydrocortisone, incase that they would continue to drop, though I wasn’t very optimistic at this point. The pathology report did come back that whatever he did remove was all tumor, so that was good to hear.

Still feeling the Cushing-like symptoms over the next few days, I took my week later blood work again just to find out that the cortisol levels went back up. My endo said that I am going to need another surgery. I remember my surgeon explaining how he wants to be as gentle as possible when messing around with my pituitary, to make sure no damage is done to it. So I understood that maybe there is some tumor cells left behind and this time he will get the job done. We were lucky enough to schedule the second surgery only about a week or so later, with a very early appointment (May 20th).

Right before the surgery, the surgeon came to me and my mother and mentioned “Hyperplasia”. He said it’s very rare, but there is a chance that my gland is what’s producing the excess ACTH and not a tumor. He said is going to try his best to determine that and continue to remove any abnormalities he see, as aggressively as he thinks he needs to be. A few hours later, waking up in recovery I felt crazy anxious. I couldn’t stand the oxygen mask so I removed that after a few minutes. I could not wait to be in my bed. Unfortunately, again, I was not feeling the crash. Disappointed again, we were giving it time and hoping again that there were just a delay in the levels dropping. The next two days passed, and my levels were still a bit high. I saw both my surgeon and endo before leaving the hospital, and we spoke about other treatments at this point, but obviously we were going to wait on the near future cortisol results before moving forward with anything else. Me and my family were pretty devastated at this point, but my parents were still being optimistic. Not able to understand how this “amazing” doctor was having a hard time curing me and why it has to be so complicated for me was beyond everyone at this point. Sent home with HC again, everyone was praying for a drop in the cortisol levels. My doctor had me get my blood taken that following Friday with STAT on it. I spent most of that day with anxiety attacks and tears, over the fact that I just didn’t know if I was cured or not. I was feeling pretty dizzy and sick to stomach…but didn’t really noticed that UNTIL…

I received a call later that day from my endo. She first asked me how I was feeling. I told her very anxious and pretty dizzy. She responded with “Good! Because your results came back and your cortisol is at 12.” My parents both jumped up (I was laying in their bed between them…yes, I felt that awful about everything going on) in shock and awe. I was shocked to hear good news for once. She said to continue the HC and that we will be doing follow up bloodwork in about a week. The next blood test approached, with prayers that it would be even lower or at least hopefully in a normal range. This time the levels were a LITTLE raised, to 18…so my doctor felt that at this time we can begin to taper the medication since my levels are indeed high, yet still in a normal range. At this point, we believed that I am in remission and on my way to recovery.

A week later, we went for the two week follow up with both the surgeon and endo. We were able to meet with both of them at the same time. Both doctors said that I am starting to look less cushing-oid, which was relieving to hear. My endo explained that because of the surgery, my Thyroid and Testosterone levels are also a bit low, and that I’d have to go on replacement until both levels are normalized. I figured that this follow up would only be to talk and go over a few things, with not any real results or new good news, but I was okay with that. Though, we did have an interesting conversation with the surgeon.

Dr. Post, the surgeon wanted to explain what was going on with this pathology report. He is known to be one of the top neurosurgeons in the country and has done thousands of pituitary surgeries. He said that I seem to be a very perplexed case of Cushings. From what he can see when he performed the surgery is that the abnormalities do NOT look like tumor cells, but that the pathologist insists that what they look like to them ARE tumor cells. Because of the confusion, he is having my pathology report results sent out to other surgeons and pathologist for further questioning. At this point, he feels that the abnormalities that he removed are indeed abnormal pituitary cells, or Hyperplasia, like he explained to me and my mother before performing the second surgery. From how it sounded to me and my parents, that treatment for Hyperplasia is pretty much the same and that if all of the abnormalities have been removed, then I should be cured. He did also say that during the second surgery, he removed a lot more abnormal cells than he did the first time. Knowing that I perplexed one of the best surgeons in the country, we all felt a bit confused and a little down about things. We spent the rest of the day in Manhattan and headed home trying to keep our chins up.

Well, today I think has been about 2 weeks from the follow up, and almost a month from surgery. I’d like to say that I am seeing changes with my face, but it’s really hard to tell, though everyone around me is saying that I look fantastic. I can’t seem to get rid of the awful bloat belly, though. I have been going to the gym with my cousin for a week or so now, since my body has been feeling ALOT Bbtter than it has the passed couple months.

Last week my endo was away for the week, and being that I have been feeling better, she decided to give me the week off from blood work, which was relieving. I finally received my Thyroid RX yesterday and began it today and will be getting the Testosterone tomorrow. I got a call from my endo today and she is having me get blood work for my cortisol this Thursday. I am praying everything is normal and that I can continue to ween off the HC even more. I’d also like to mention that I going to see a laser dermatologist tomorrow for a consultation to see what can be done about the hideous stretch marks that my legs are covered in.

So it seems at this point I still am not 100% positive that I am in remission and this Thursday’s results should give us a pretty definite idea. I think this just about covers everything you guys need to know about me and my journey and battle with Cushings. I’m sure there’s so much I left out, though I am sorry it’s such a long introduction. I do feel my story is quite unique, being that I basically diagnosed myself and caught the symptoms so quickly. Please, if anyone has any questions or anything they’d like to discuss, PLEASE feel free to post back. It looks me DAYS to finish this and about 6 drafts that I started over a month ago when I was going to introduce myself to you guys before my surgeries…just was never able to bring myself to finish.

Contact Joseph

Joseph may be interviewed in an upcoming BlogTalkRadio show.

In Memory: Diana Crosley

June 18, 2026

MaryO Adrenal, Adrenal Insufficiency, Adrenal Surgery, Cancer, Golden Oldies, In Memory, Other Diagnosis, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

diana2003a

Portland, OR, Cushing’s Conference, October 2003, Day 2, at a “House of Magic” dinner.

diana2003b

Portland, OR, Cushing’s Conference, October 2003, Day 3. It was very windy on the Oregon Coast!

diana2005

Brighton, MI: Cushing’s Weekend, October 2005

diana2007

Columbus, OH Cushing’s meeting, 2007

Diana’s official obituary from Adams Funeral Home:

Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family.  She was born September 30, 1955, in Sidney, the daughter of Francis Alexander, and the late Laverne Egbert Alexander.

Diana is survived by her father and step-mother, Francis and Carole Alexander, of Sidney; daughters, Stacie Crosley, of Columbus, Casey Crosley, of Silver Spring, Maryland, Ericka Crosley, of Sidney; one granddaughter, Ella Laws, of Sidney; two sisters, Kathy and Randy Watercutter, of Minster, and Susan Alexander, of Mt. Vernon, Missouri.

Diana was a 1973 graduate of Anna High School. She was a registered nurse for many years. In her spare time she enjoyed meditating and doing yoga. She also enjoyed relaxing at the beach in Florida.

Her family, her children and especially her granddaughter, was the love of her life. She will be deeply missed by all.

The Crosley family would like to express their sincere thanks to Ms. Lisa Blagg and the entire staff of Wilson Hospice for the continued compassionate care of their mother during her extended illness.

Funeral services will be held on Saturday, June 21, 2014, at 3:00 p.m., at the Adams Funeral Home, 1401 Fair Road, Sidney.

Family and friends may call from 12-3 p.m. on Saturday, prior to services at the funeral home.

Memorial contributions may be made to Wilson Memorial Hospice in Diana’s memory.
Envelopes will be available at the funeral home.

Diana’s Cushing’s Help bio:

As with everyone who suffers from this disease, mine is a rather long story.

In retrospect, I believe I became symptomatic sometime around 1994. Particularly, I remember the weight gain and facial hair. I was also somewhat depressed, but at the time I was in an emotionally and physically abusive relationship and had a lot of “on the job stress” in my position as a psychiatric nurse, working for an HMO. In addition, my grandmother was ill, I turned 40 and I attributed most of my problems to “life” In 1995, I accepted a job transfer from Dayton, Oh to Birmingham, Al. My grandmother had died and I needed to get away from the relationship. Unfortunately, the office in B-ham closed after approx 18months and I accepted a position as RN/Medical director at a residential facility for children with autism, seizure disorders and behavioral problems.

Meanwhile, I continued to gain weight, I began to notice some “swelling” on the back of my neck, I bruised very easily and had problems concentrating. I went on the Phen-fen diet and lost approx 40 lbs. Of course, now I’m wondering How did that happen? If the weight gain was Cushing related In June of 1998, I was thrown from a horse and fractured my pelvis in two places. Again unfortunately, the initial x-ray didn’t reveal any breaks, so I continued to work in extreme pain. My physician kept saying I was “just a slow healer”

At this point my blood pressure skyrocketed, the slightest scratch or bump would result in a major hematoma and skin tear. I had a cardiac work-up and was told I had ischemic tissue in my left ventricle and was sent to Houston for a cardiac cath.

Ok this part’s kind of funny, now of course at the time I couldn’t believe it. If anyone’s familiar with Houston, you know how terrible the traffic can be. I arrived for the cath, at 8am I was prancing like a wild animal in my room as I waited for the nurse to bring me my “sedative” At approx 11:00 she came in and began to take my vitals. Almost simultaneously, she was paged, returned to my room to tell me that the cardiologist had broken his tooth while eating a muffin for breakfast and all his procedures for the day were cancelled. I had to reschedule. Thankfully, when I did have the cath, he told my my heart” was beautiful” When I asked about the results that said I had dying tissue he replied “Oh, that must have been a blurp on the film”.

Moving on, even though my heart was fine, I had now regained all of the weight I had lost and was in constant pain. I then moved to Florida to stay with a friend’s mother, who had suffered a stroke. I began working per diem as a Home Health RN. I kept getting worse in all areas. I went to a doctor in Fl. who told me I was depressed and getting older, ergo all my problems. He told me that the buffalo hump was a fatty lipoma and referred me to a surgeon to have it removed. I went to a surgeon for a consult, was scheduled for surgery and my COBRA ran out on my insurance and I couldn’t afford to continue it.

I then went to a plastic surgeon, who confirmed it was a fatty lipoma, of course One of the biggest he had ever seen. He even photographed it to use for teaching seminars. And don’t you know, it grew right back. I spent 1700.00 (on credit) and it came back. At this point, I was having trouble standing, sitting, lying down. I was in constant pain and was having a lot of problems just trying to do my job. I went to another physician who thought I was depressed and maybe had leukemia because my lab work was all screwed up. Here again, the bad news was I was dying but it might take twenty years for the leukemia to kill me. At this point, I was ready to hang it all up.

Then, in Aug of 2001, I had just seen my last patient and was on my way to the office to complete the paperwork when a young man did a U-turn and t-boned me on the driver’s side. This just about put me over the edge, however, again, on the bright side, I went to a chiropractor, whom I had been seeing, and she ordered an MRI of my back. The MRI also, incidentally, revealed massive bilateral, adrenal hyperplasia.

I contacted the Nurse’s Endocrine Society. They sent info on Cushing’s. I could not believe the sketching of the women with Cushing’s it looked just like me. I also fit the symptom profile, almost completely. I was referred to an endocrinologist in Melbourne, FL. He did the 24-hour urines and dex test, confirmed the diagnosis, I was already convinced. He contacted the NIH as I didn’t have health insurance. I had a bilateral adrenalectomy (right side laproscopically and open left side as I began to bleed) Jan 17, 2002. I was discharged on Jan 26th.

I came to Ohio to stay with my daughters while I recovered, never thinking in my wildest imagination that that process would be so lengthy and utterly miserable. I hurt everywhere like I had never hurt before. I developed a serious sinus infection I went back to Florida in Feb. I stayed with friends. I applied for disability, I hoped for a worker’s comp settlement for my back injury. The insurance company who was handling my claim filed Chap 11 and all pay outs were suspended. They did pay for some physical therapy. There contention is that it was the Cushing’s that was my major problem and not related to the accident, however, duh! They’re right, but because I had the Cushing’s the injury I incurred in the accident was more severe than the average person would have sustained.

When I went to the NIH in Jan the chest X-ray revealed multiple healing rib fractures which were most likely a result of the accident. So, I’m still awaiting word on my disability, I was denied, appealed, denied again and am waiting for the hearing. In the meantime, my car was repossessed, I will most likely have to file bankruptcy and am now staying with my oldest daughter in Columbus.

I have lost approx 55lbs, my skin is healed, my buffalo hump and moon face are gone. I am still in quite a bit of pain in my joints, muscles and bones. I don’t have the energy I would like to have and I still have spacey moments. The mental part has been tough. A lot of days I really wanted to be dead. I was on morphine for my pain and I was so sick I would start vomiting and it would go on for 24-36-48 hrs. I finally quit taking the morphine and thank God, that has stopped. I am relying on my family and friends for everything and I’m used to being the giver, not the taker. I guess I’m learning to be humble and I am so much better, it’s just that I’ve just gotten access to the internet, and have been reading the chat board and message board and it seems that I am still a “slow healer”

It has been one year since that surgery and I guess my expectations were that if I kept trying to be patient, get through this year things would be back to a semblance of normalcy. OK I know I’m wordy.

Thanks for the support and I would welcome input from anyone.

Diana

Update January 28, 2011

It’s been awhile since I’ve been on the boards and I’ve tried to update my bio on occasion. However, due to my impaired technical abilities (lol) I was unable to figure out how to do so, even though Mary has made it SO easy. Again, lol

Anyway, the first five yrs post BLA were painful and traumatic but also a blessing. In 2005 I started taking yoga classes and that was the beginning of an amazing transformation for me. It led to meditation and an exploration of the spiritual meaning of this illness and of life in general. Of course the transformation wasn’t immediate and it is ongoing but I feel so blessed to be experiencing this life. I’ve learned to be grateful for the gifts of all of my experiences. Without Cushings, I never would have met some of the most caring and amazing people on this earth.

In July of 2008 I returned to Florida. I am now living in a little beach town, bought a bicycle and ride it almost every day. I still have pain, but it’s manageable and I focus on my breath and gratitudes as a way of managing it. I’ve learned the value of positive thoughts and intentions. I’ve learned that we are all more powerful than we may have ever imagined. I’ve met some amazing people here and continue to read and attent seminars and classes on exploring my purpose in this life and the gifts I have to give to the universe.

To all who are just beginning this Cushing’s journey, and for those experiencing the feeling of “no light at the end of the tunnel” -the light is there, just waiting for your arrival.

You can and will get through this, your life is not over.

Again, many thanks to Mary O who has given her gifts to help other souls navigate their way through a painful time

Much love to all
Diana

ORKitty, Pituitary Bio

June 14, 2026

MaryO Adrenal, Adrenal Surgery, Ectopic, Golden Oldies, Pituitary, Pituitary Surgery, Thyroid , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Another Golden Oldie, this bio was originally posted 01/22/2008

Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.

I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.

Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.

In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.

After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.

I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.

Oregon Health Sciences University.

Oregon Health Sciences University. (Photo credit: Wikipedia)

That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.

In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.

I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.

Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.

Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.

I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.

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