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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.

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

In Memory of Kate Myers ~ June 23, 2014

June 23, 2026

MaryO Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, BlogTalkRadio, Hypothyroidism, In Memory, Insulin Resistance, Interview, Other Diagnosis, PCOS, Pituitary, Pituitary Surgery, radiation, Recurrence, Thyroid, Treatments, Video , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

kate-fbkate

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

In Memory of Sherry Carlson ~ May 30, 2020

May 30, 2026

MaryO Addison's Disease, Adrenal Surgery, Cyclic, Golden Oldies, In Memory, Pituitary, Pituitary Surgery, Treatments, Update , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

 

Sherry passed away this afternoon, naturally and peacefully in her sleep.

She loved her community and we know how grateful she was to every one of her friends on here for the genuine love and support she’s received over the years.

We (her family) are processing, but will share details about her celebration of life when we’ve worked it out.

Sherry’s Slideshow:

Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

 

Sherry’s bio:

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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She thought her weight gain was due to giving birth. She learned it was a tumor

May 28, 2026

MaryO Pituitary , , , , , , , , , , , , , , Leave a comment

Dr. Irmanie Hemphill, who first thought her weight gain was due to having a baby. Doctors at Cleveland Clinic Florida in Weston diagnosed her with a tumor in the pituitary gland in her brain.

In the summer of 2019, Irmanie Hemphill gained a lot of weight, developed acne and had high blood pressure. She attributed it to her body adjusting from giving birth just six weeks prior.

“I was thinking maybe it was just hormonal changes from having a baby,” said Hemphill, 38, of Pembroke Pines.

But when Hemphill, a family medicine physician, saw that her nails were turning dark and she gained five pounds within a week, she knew it was something more serious.

Blood tests ordered by her physician came back normal, with the exception of high levels of cortisol detected via a urine cortisol test, which she requested after researching her symptoms online.

The next step was to find out where the excess cortisol was coming from: either her kidneys or her adrenal glands, which produce hormones in response to signals from the pituitary gland in the brain.

The first MRI of her brain did not detect anything abnormal, so her endocrinologist attributed her symptoms to her body adjusting post-pregnancy.

Hemphill sought a second opinion at Cleveland Clinic Weston, where more MRIs of her brain, combined with an Inferior Petrosal Sinus Sampling (IPSS) procedure, detected she had a tumor on her pituitary gland. That led her to be diagnosed with Cushing’s Disease — caused by excess cortisol.

TWO TYPES OF PITUITARY TUMORS

There are two types of pituitary tumors: those that produce active hormones, like the one Hemphill had, and those that do not, which grow in size over time and do not manifest symptoms right away.

Hemphill’s tumor was producing adrenocorticotropic hormone (ACTH), which causes the adrenal gland to produce more cortisol.

Many people with Cushing’s Disease experience high blood pressure and high blood sugar, muscle fatigue, easy bruising and brain fog. If left untreated, the condition can lead to pulmonary embolisms, diabetes, osteoporosis, strokes and heart attacks.

“It was a little bit of relief but also sadness,” said Hemphill, of finding out her diagnosis. “I was very happy that I got a diagnosis but now it’s like, what’s the next step?”

LESS INVASIVE WAY TO REMOVE A PITUITARY TUMOR

Hospitals in South Florida are at the forefront in developing new research, techniques and technologies for pituitary tumors.

The tiny bean-shaped pituitary gland is located at the base of the brain and controls many of the body’s hormonal and metabolic functions.

Last June, neurosurgeon Dr. Hamid Borghei-Razavi of Cleveland Clinic Weston removed Hemphill’s pituitary tumor through her nose. This type of procedure allows surgeons to remove the tumor without damaging the brain.

“It’s a less-invasive approach compared to 20 years ago, when pituitary tumors were removed through the cranium,” he said. “Now, with new technologies, more than 95% of pituitary tumors can be removed through the nose.”

The procedure takes just a few hours to complete, based on the size and location of the tumor. Patients usually stay at the hospital for one to two days afterward for observation.

The removal of Hemphill’s tumor, which was three to four millimeters in size, put an end to her Cushing’s Disease and her symptoms, though it took six months to a year for Hemphill to feel normal. (She was prescribed cortisol for six months until her adrenal glands could restart producing cortisol on their own.)

“Sometimes it’s very hard to make a diagnosis for pituitary tumors because we don’t see them in the MRIs,” said Borghei-Razavi.

“We call it MRI Negative Cushing’s Syndrome. It means we don’t see it in the MRI, but the cells are there,” he said.

Borghei-Razavi and Hemphill credit the Inferior Petrosal Sinus Sampling (IPSS) test as pinpointing her tumor. Cleveland Clinic Weston is among only a handful of medical practices in South Florida that use this technique.

Three Ways to Remove the Tumor

Most pituitary tumors are benign. The challenge is when it comes to removing the tumor.

“Pituitary tumors come in all shapes and sizes,” says Dr. Zoukaa Sargi, a head and neck surgeon at Sylvester Comprehensive Cancer Center at the University of Miami.

“There are non-functional tumors that do not secrete hormones that can reach extreme sizes of up to 10 centimeters before coming to medical attention. This is the equivalent of the size of a grapefruit,” he says.

“Then there are functional tumors that produce hormones that are typically discovered much sooner and can be only a few millimeters in size before coming to medical attention. A small proportion, less than 1%, are malignant,” he adds.

There are three treatment options for pituitary tumors: surgical removal, medical therapy and radiation.

“Medical therapy is only applicable in certain functional tumors that produce hormones,” says Dr. Ricardo Komotar, a neurosurgeon who is director of the Sylvester Comprehensive Cancer Center Brain Tumor Initiative.

“Radiation is an option primarily for inoperable tumors with high surgical risk. Surgical removal is the optimal treatment in the vast majority of pituitary cases, conferring the greatest benefit with the lowest morbidity,” he says.

Dr. Rupesh Kotecha, chief of radiosurgery at Miami Cancer Institute (MCI), part of Baptist Health South Florida, says there are a number of different hormones that the pituitary gland can secrete.

“Prolactin is the most common form of pituitary adenoma that’s functioning and accounts for 30% to 50%,” he said.

Excess prolactin can cause the production of breast milk in men and in women who are not pregnant or breastfeeding.

Kotecha said the next most common are growth-hormone secreting tumors, which occur in 10% of patients.

ACTH-secreting adenomas — the kind that Hemphill had — account for 5% of patients, while 1% secrete TSH, which causes the thyroid gland to be overactive.

MCI’s Proton Therapy delivers high-dose radiation that treats the tumor’s area, allowing for surrounding tissues and organs to be spared from the effects of radiation.

“The pituitary gland essentially sits in the middle of the brain,” says Kotecha. “It’s sitting in the middle of all of these critical structures.”

From https://www.miamiherald.com/living/health-fitness/article251653033.html

Voices From the Past: Erin, Undiagnosed Bio

May 9, 2026

MaryO PCOS , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Hi. My name is Erin and I’m 28 years old. The first time I ever heard of Cushing’s was a couple weeks ago while doing a search for hormonal imbalance. I’ll explain why later. I am currently doing a 24 hour urine cortisol test, and thought that in between peeing in the large container, I’d share what little story I have.ufc

I have always been a normal weight and healthy, well, up until about 5 years ago. I mean, obesity was NEVER a word that had to be used to describe my weight. I’m 5’8″ and lingered around 140 lbs my entire life. I was quite the drinker, too. I started gaining weight when I was about 22 or 23, and started taking Adderol to get the weight down, and it worked like a charm. (I am currently a recovering alcoholic and have been in recovery for over a year now.)

When I started trying to get sober, I noticed little things, but mainly the weight gain. I have always had larger hips and thighs and a smaller waist, so when I began to look 6 months pregnant, I thought it was odd (and embarrasing). I have bruised very easy every since I was a teenager, but in the past few years the bruises come easier and are quite large. My acne will just not quit, and I started sprouting these thick hairs on my face, chest, and abdomen. My face has ballooned out like a pumpkin, and I don’t hardly recognize myself anymore.

In May 2012 I had a miscarriage at 12 weeks. During the pregnancy I started getting these purple stretch marks all over my thighs and hips, and since I had neve been pregnant before, decided this was normal. Before then I was having trouble getting pregnant, but just chalked it up to bad timing. After the miscarriage, I noticed my menstrual cycles were different. They had shortened from 26-27 days to 22 days, and just didn’t seem right. I started seeing my gynecologist every month, but kept getting dismissed because it hadn’t been a full year since the loss, and my hormones were probably still imbalanced. I did get them to test for PCOS, and everything came back normal, including an ultrasound, which just made me seem crazy.  I switched gyns and eventually had a hormonal blood test, which revealed very low estrogen and progesterone, and I was referred to a fertility specialist. Another blood test there revealed my ovaries are not responding very well and not secreating enough of the AMH hormone.

About a month and a half ago I decided to battle the bulge, and joined a gym and changed my diet. After 2 weeks of cardio and strenth training almost every day, I hadn’t lost a pound. Then at week 3, I finally noticed a 2 pound weight loss, but that’s when the knee pain started. For no reason at all, my knees became VERY sore, swollen, and were bruising from the inside of the joint. I saw an orthopedic who couldn’t find any evidence of injury, gave me a cortisone shot in each knee, and sent me on my way. I should also mention that a week before that I had a cortisone injection in my back for a herniated disc that was causing sciatic nerve pain.

A few days after the last set of injections in my knees, I started feeling very ill and run down. I had also just missed a period for the first time in my reproductive history, and after a negative blood pregnancy test, was told my hormones were too low for my period to start on its own. I thought I was feeling under the weather because of the missed period, so that’s when I started looking up hormonal imbalances online. When I came across the word Cushing’s, I couldn’t stop reading about it. I thought, oh my god, these people are me! They look like me! Thinking back over the years, all of these individual symptoms could be explained away due to stress, inactivity, lifestyle change, etc. But collectively, I started to see the bigger picture.

So, I am currently testing with my PCP. I am selfishly hoping that I get a quick diagnosis, or if it isn’t Cushing’s, that they find some other reason for all of these symptoms. But from what I’ve read this is going to be a long process.

Genevieve (JenNYC), Undiagnosed Bio

May 8, 2026

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

to-do-diagnosis

 

I have many Cushings symptoms. I developed severe, often incapacitating IBS nearly 12 years ago and believed I had Crohn’s or Celiac Disease. All tests came back negative.

Around 5 years ago my symptoms got worse, and my normally thin to average weight shot up, despite normal diet and exercise. I became depressed, anxious, and had painful joints and flu-like symptoms. I also had irregular periods and skin problems (dry skin/eczema, acne, frequent brusing and skin infections and bug bites that never healed). My blood pressure at times was high and other times normal, my face would flush, and I had kidney infections and kidney stones.  My hair started to thin. The worst part was the weight gain- all in the face and stomach area; although my arms and legs were thin by stomach was bloated and very heavy.

I was told by several doctors to excerise and diet and have– nothing works. I had blood tests done and they found low ferritin, very low iron/Vitamin B/Vitamin D, alternating high and low blood pressure & thyroid. I was diagnosed with anxiety or fibromyaligia, depending what doctor I went to. I was told I did not have IBS, although I have diarrhea almsot daily.

I also have low muscle tone, poor energy, insomnia, chronic fatigue during the day, and wake up in night sweats.

The one test that was finally ordered for high cortisol (24 hour urine test) came back ‘normal’ range– so either it was a fluke or I really am crazy.

I don’t know what to do. Doctors, family and friends, tell me “just diet and exercise”–thinking weight gain is just a willpower issue– but what about all these other symptoms? I feel like I have flu every da y and miserable. My joints ache severly and although I have been working out, calorie counting, and doing Weight Watchers, and (alternately raw vegan and liquid diets) for months I don’t lose any weight and look 7 months pregnant.

I need advice.

Emma (emma22), Undiagnosed Bio

May 5, 2026

MaryO Hypothyroidism, PCOS, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi there,

I’m not really sure where to start! I’m 22, and work full time (10-12 hour shifts) as a porter in the operating department of a city centre hospital- so i’m very very active, constantly walking/lifting/carrying on a daily basis.

I was diagnosed with chronic fatigue when i was 13 after a bout of severe flu/repeated shingles infections, and never really recovered, but i was gradually well enough to live a more or less normal teenage life. I have never struggled with my weight (a constant 9 stone at 5 foot 5), until a year ago, when i suddenly started suffering from extreme weight gain (7 stone in 10 months), fatigue, acne, mood swings, hair loss where there should be hair/hair growth where there shouldn’t be, stria, irregular periods (and when they arrive they’re incredibly heavy, buffalo hump, heat intolerance and all manner of horrible symptoms.

I’ve been diagnosed after tests and ultrasounds with PCOS and hypothyroidism, and am currently being treated with 75mg thyroxine (to be increased), and am due to start on metformin.

There’s been very little improvement in how i feel, and after a pretty horrible meeting with the endo, in which all she really did was call me fat, tell me to stop the late night trips to mcdonalds (I’M VEGAN! mcdonalds is pretty much the antichrist to us!) and refer me to the dietician. i felt really let down and all i could do was try to hold the tears in until i got back to the car.

she didn’t seem to realise that for a 22 year old woman to be feeling more like a 90 year old, is a pretty horrific experience. but i digress…

i’m due to be tested for cushings in a few days time with the low dose dexamethasone, and i know this is awful to say, but i’d jump for joy knowing what’s going on with my body at last.

although i know i have pcos and an underactive thyroid, i just know that there’s something else going on with me, and unfortunately my consultant just won’t listen to me.

my social life has disapeared, i just feel too goddam ill, not to mention my incredibly unsupportive boss, who seems to want to make my life a living hell because i’ve had to take a lot of time off work- she even screamed at me until i cried when i collapsed at work one day. i’ve actually taken to hiding in the toilets in the afternoon to have a nap, and to regroup, just so i can get through the day. never mind that i’m a 22 year old who has gained 7 stone in under a year- it’s hard to feel great about myself!!!

anyway, hopefully one day i’ll find out what’s wrong with me

this was me last year:

 

and this is me now:

quite a difference huh?! and apologie for the poor fashion sense!
anyway, wish me luck, and and my best wishes for everyone going through diagnoses/treatment for any health issues, we’ll get there in the end 🙂

Dana E (Dana), Undiagnosed Bio

May 4, 2026

MaryO Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 4 Comments

Hello, my name is Dana. I am a 43 year old female. I live near Dallas, TX. I attend college and spend allot of my time taking care of my crazy family, whom I love very much. After reading posts on this site I decided to document my symptoms and experiences.

A couple of days ago I was discussing my endoscopy and colonoscopy results with my mother-in-law. They showed I have GERD, esophagitis, stomach erythema, duodenitis, hiatal hernia, hemorrhoids, nine polyps, and IBS. Wow. After all that she asked me if I was checked for goiter. GOITER? I told her I was just fat. Over the last several years I have gained weight. I did the Atkins diet in 2000 and lost 70 lbs, but gained back 100. Most of my weight is in my abdomen, face and neck. I have relatively small legs, hips and rear. I have had several people think I was pregnant and told how disproportionate my body is. Recently my kids and even my 4 year old grandson have commented on my weight and health. I have noticed that my neck is getting larger, despite being the same weight for a while now.  I have poor eating habits, which I am trying to change. I only eat once or twice a day and I am an active person. I do not exercise except for walking. After my mother-in-laws comment I decided to do some research.

I have almost every symptom of Cushing’s. Central obesity, thinning skin and bruising, especially on my hands. Oral candidiasis, axillary and cervical skin tags, round, fat, red face and neck, oily skin and hair with recent increased acne, headaches, fat pad on back of neck, blurry vision, fatigue, back pain, arm weakness, heat intolerance, pain in joints and swelling in hands and feet, thirst, facial hair, and increased heart rate at weird times. I have been treated for depression/bi-polar for several years now. It took two and a half years of experimenting to find something that would keep me stable. I still have emotional instability, depression, cognitive difficulties, and mood swings. I have many stretch marks but only a few are red. I have very fair skin so my coloring is not the same as others. The only symptoms I do not have are irregular periods. I do have what feels like a soft mass under my chin fat. There are lymph nodes under the area, so this could be the cause.

I pray I am able to find a doctor who will not dismiss my symptoms as some of you have experienced. My first appointment will be next week with my primary care physician and we will go from there. Wish me luck and I will update regularly.

Does anyone know of a good endocrinologist in the Dallas-Ft. Worth area?

Coleen (EyeRishGrl), Pituitary Bio

May 4, 2026

MaryO PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Mid-2004, at age 24 and halfway through planning my wedding, I started gaining weight. Hair started growing on my chin. Unexplained bruises started appearing on my legs. The wedding dress I had ordered in January didn’t fit, and the salon had to rush-order an extra four yards of fabric, so the seamstress could insert an extra panel in the bodice.

No matter what I did, I couldn’t lose the weight. My face became round and red, and while I had never completely outgrown my teenage acne, it got 10 times worse. Even the strongest acne drug on the market, Accutane, couldn’t make it go away. I had been taking oral birth control pills to ease PMS cramps, but when I accidentally skipped a few pills in early 2006, my period never came. My gynecologist referred me to an reproductive endocrinologist who diagnosed me with Poly-Cystic Ovarian Syndrome. My blood sugar tested high; I was pre-diabetic. Unbeknownst to me, they tested my steroid levels. They were elevated, but out of the range of normal.

In September 2006, my father was watching a local NBC news (which was a bit unusual; he normally always watched the local ABC news). The health segment was on, which he normally ignores. They were profiling a woman with a rare disease called Cushing’s. The woman had the same round, red face, and distended stomach. He called for me to come see the TV. “I think that’s what you have.”

I found a general practitioner, as I didn’t have one at the time. Prior to my first appointment, I wrote out my health history. I attached pictures of myself as I used to be (prior to getting sick, I was about 130 pounds). I listed my complaints (always tired, bruising, no period, acne, high blood sugar, depression). I brought everything with me. His response? “You don’t have that; it’s too rare.” Instead he told me I had high blood pressure (another Cushing’s symptom), gave me a prescription and told me to come back in two weeks.

He bullied me into enrolling in a study on depression and anxiety through a local teaching hospital. In order to enroll, I needed to submit a urine test. The urine test showed above-normal steroid levels, but he continued to insist I did not have Cushing’s. The study weaned me off my anti-depressant and onto an anti-psychotic. I was to slowly increase my dosage, stay there for a month, then wean off. In the meantime, I was going back to the general practitioner every two weeks for a blood pressure check (paying a co-pay every time). The general practitioner continued to diagnose me with everything ELSE under the sun, even referring me to a neurologist to rule out early-onset Parkinson’s disease. The neurologist told me that my general practitioner was an “idiot” (his words) and said, “Get thyself to a endocrinologist.” I called for an appointment, but they couldn’t fit me in for two months.

In the meantime, the anxiety/depression study had me wean off the anti-psychotic, and I relapsed so deeply into depression, I contemplated but never attempted suicide.

I brought the same health history, photos and complaints to the endocrinologist in January 2007. I didn’t even finish my “presentation” when he said, “You have the most classic case of Cushing’s I’ve ever seen.” He explained what it was, and the different causes. He explained that I was most likely facing surgery, and I would need to contact an endocrinologist at one of two hospitals in the city. I went to the one that was able to give me the earlier appointment, which turned out to be the Hospital of the University of Pennsylvania.

My first appointment was very disappointing. They wanted to run their own battery of tests, the same tests I had already completed. To be honest, I broke down and cried on the exam table. But I did their tests. I got an MRI. They were concerned that my tests showed symptoms of Cushing’s, but there was no tumor visible on the MRI. They recommended I undergo a procedure called Inferior Petrosal Sinus Sampling. It happened in May 2007. I was sedated, and a catheter was inserted into the vein near my groin. Tubes were threaded up to my brain. I was given an injection of steroids, and my body’s reaction was measured. Results indicated the tumor was on the right side. Surgery was scheduled for the end of July 2007.

On July 3rd, after coming home from a meeting with a realtor where my then-husband and I put in an offer and good-faith deposit on our first home, I passed out and fell down the stairs. My family called 9-1-1, and the EMTs transported me to a local hospital’s emergency room. They tried 12 times to take blood, but were unsuccessful. They told me I was dehydrated, and to stop taking my blood pressure medication.

Two days later, I met with the ear, nose and throat doctor who would assist in the surgery. He explained his role, and the risks of the surgery, which included death. I asked how many have died from the surgery. He said that in the years he had been assisting the neurosurgeon who’d be doing my surgery, the only patient they’d ever lost on the table had undiagnosed blood clots in his lungs.

Three days later, while at work at a university in New Jersey, I collapsed again while standing at the copy machine. I was taken to a different hospital. My family arrived and explained my condition to them. They were unfamiliar with it, and asked for my endocrinologist’s phone number to consult with him. He directed them to check my lungs for clots. Sure enough, a CT scan showed massive blood clots on both lungs — they were 80% blocked. I was admitted to the ICU. I couldn’t even roll over in bed without gasping for breath. My surgery was cancelled.

I spent 5 days in the ICU while they did ultrasounds, CT scans and other tests. They wanted to give me Tissue Plasminogin Activator, a scary clot-busting drug that carries a risk of causing internal bleeding. I requested a transfer to the hospital where I was being treated for Cushing’s. I spent another five days in the hospital there, getting more ultrasounds and CT scans. They recommended a “wait and see” approach, and I was discharged on blood thinning medication.

Several months of doctor visits followed. I saw the endocrinologist, the neurosurgeon, the pulmonologist, and the hematologist. The first two argued with the second two about when surgery would be safe. I finally got word that my surgery would occur mid-December 2007.

The surgery itself was uneventful, and a suspicious mass was removed. My steroid levels plummeted (my pituitary had stopped producing steroids while the tumor made them) and I supplemented with hydrocortisone pills. At a follow-up appointment four months later, my endocrinologist was concerned that my pituitary had not “woken up” and started producing steroids on its own again. I had to wear a Medic Alert bracelet, because my body wouldn’t be able to cope with a major injury or illness.

It took almost a year for any steroids to be detected through blood tests. But in the meantime, the weight nearly melted off. My acne went away. My period returned. My blood pressure and blood sugar returned to normal. My depression eased. My hair thickened. I was able to sleep at night without a sleep aid. I stopped the blood thinners. Once my coritsol levels returned to normal, I only went back every six months, and later once a year, for follow-ups. My endocrinologist proclaimed me cured.

I am now 32 years old. My marriage did not survive Cushing’s disease, but I’m with someone new, and we have a healthy, happy baby boy. Part of the clots calcified in my lungs, and I will always be about 10% blocked (which means I’ll never run a marathon, but hey! I never planned to, haha). As the years pass, the struggle with Cushing’s feels like it happened to someone else.

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