I went to the Dr. in about Sept. of 2014 and was diagnosed with diabetes. I hadn’t seen my primary care Dr. in awhile due to her being out on pregnancy leave. She was there that day and she looked at me and told her nurse to set me up for labs to be tested for Cushings. She told me I had the look of a Cushing patient. I had gained about 50 lbs in about 6 months. I had the moon face and all the weight was in my stomach. My labs came back positive for Cushing. I was already seeing an Endo Dr. and she sent the labs to that Dr.
My Endo Dr did test on me and within 6 months they were positive I had Cushing. It showed I had a tumor on my pituitary gland. I surgery on my pituitary gland on April 11,2017. The endo dr at the hospital I had surgery at told me that the surgery was unsucessful I still had Cushing. They did a MRI in Oct. of 2017 and it showed I have 2 tumors on the gland now. I’m going for another MRI.
On May 7th to update so the surgeon will know if he’s going to take half of the gland or the whole gland. So that’s where I stand at the moment. I have diabetes, high blood pressure, high cholesterol,trouble with my bladder, kidney failure and my heart doesn’t relax its staying stiff all the time and causing me to have chest pains daily. I also have chronic migraines.
I joined a group on facebook when i found out i had it and read alot and asked alot of questions. People that don’t know anything about it needs to read up on it. I sent a link of the Cushing’s site to everyone in my family to read up on it. Some have and some haven’t.
Theres still alot I don’t know and I think it great that the ones that does have it and know alot more than some of us is a blessing.
Fabiana will be our guest in an interview on BlogTalk Radio Wednesday, October 21 at 6:00 PM eastern. The Call-In number for questions or comments is (657) 383-0416.
The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you’re waiting, there are currently 88 other past interviews to listen to!
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Fabiana had transsphenoidal surgery (pituitary) July 30th 2004. She had a recurrence after seven years of being Cushing’s free. A second pituitary surgery on 10/26/2011 was unsuccessful.
Another Golden Oldie, this bio was last updated 9/12/2015
Well it has taken me a year to write this bio…and just to give some hope to those of you just going thru this process…I have to say that after surgery I have not felt better! I am back to who i always knew I was….the depression and anxiety is gone and I am living life like a 24 year old should!
I guess it all started when i was sixteen (hindsight is 20-20 i guess). My periods stopped i was tired all the time and the depression started. We all kind of just chalked it up to being sixteen. But my mom insisted something was not right. we talked with my gyno…who said nothing was wrong, I had a fungus on my head (my hair was getting really thin) and sometimes girls who had normal periods (in my case three years of normal periods) just go awry.
My mom wasnt hearing that and demanded a script for an endo. I went….he did blood work…and metioned cushings. But nothing came back definitive…so they put me on birthcontol and gave me some hormones and the chushings was never mentioned again because that all seemed to work.
As time went on my depression got worse, the shape of my body started to change-my face and stomach was the most noticeable- and my energy level kept going down. I kept going back to the doctors asking to be tested for mono..or something. I went to a psycologist….but i knew there was no reason for my depression. Two of them told me “i had very good insight” and that I didnt need them. I started getting more anxiety..especially about going out socially.
High school ended and my typical optimistic personality started to decline. I put on a good act to my friends but my family was seeing me break down all the time. I went away for college (all the while gaining weight). My sophmore year I had a break down..I called my family crying that i needed help. I couldnt beat my depression. I didnt drink in college because i knew that would mean instant weight gain, i barely went out…i exercised everyday..hard….i joined weight watchers…i stuck with it. I was at 103 lbs….that crept up to 110…that crept up to 117…each time my weight goal would be “ohh if i could just get back to 108..112…115” with each weight gain my original weight goal would get higher and higher.
Internally i felt like I was constantly under a black cloud..i knew there was no reason why i shoudl feel this way..i was doing great in school, i had a supportive family, an amazing boyfriend and great friends…why was i depressed? I was becoming emotionally draining to the people closest to me…I would go home a lot on the weekends…i was diagnosed with PMDS….like severe PMS..and was given an antidepresant…i hated it it made me feel like a zombie…i stopped taking it and just made it apoint to work on fighting the depression….and the weight gain.
When i was done college i was about 120 lbs. My face was getting rounder and rounder..i was noticing more hair on my face and arms…and a hump between my shoulder blades and the bottom of my neck. My mom saw a tv show about Polycystic ovarian syndrome and felt that maybe that was what was going on with me…i went to my PCP with this and she said it was possible and that i should to talk to my gyno….I am 4’8 and at the time weighing close to 125..i talked to my gyno and she said I was not heavy..that i was just “itailan” ..i told her my periods were getting abnormal again even w/the birthcontrol and that i was so tired all the time and my arms and legs ached. I also told her that i was bruising very easily…and that the weight gain would not stop despite my exercising and following the atikins diet very strickly for over 6 weeks. My boyfriend and I decided to try the diet together..he lost 35 llbs in 6 weeks..i lost NOTHING! I went back to my PCP who ordered an ultra sound of my ovaries…..NOTHING.(i kept thinking i was going crazy and that it was all in my head)….she also decided to do some blood work…and as i was walking out the door she said..”you know what..i am going to give you this 24hr urine test too. Just so that we cover everything”. I just kept thinking please let something come back ….please dont let this be all my fault…please dont let this be all in my head…..please dont let me be crazy. When i got the test results back it turned out that the 24hr urine test was the one test i needed to get on the right track to finding what was wrong. My cortisol level was 3x’s the normal.
I went to an endo…by the time i got to the endocronoligist i was up to 130…i could not work a full day without needing a full day of sleep and my body was aching beyond description. I was crying all the time…in my room…and was becoming more and more of a recluse…i would only hang out with my boyfriend in our houses. I looked my symptoms up on the internet and saw cushings…that was it! I went to the endo and told him..i think it is cushings….he said he had only saw it one other time and that he wanted to do more tests. I got CAT scans, x-rays, MRI’s….my adrenals my pituitary my lungs….he did a CRH stimulation test which was getting blood work done every fifteen minutes for 90minutes….it took weeks to get that test scheduled..no one had ever heard of it and therefore did not know how to do it…..finally after 3 months of tests my dr. felt he had enough evidence to diagnos me with cushings disease (tumor on my pituitary) I was diagnosed in March of 2004. By this time i was about 137 lbs i had to work part time (i am an occupational therapist for children..i do home visits….i could not make it thru a whole day)
In April i had to change to office work…i could not lift the children and i could barely get up off the floor. I have to say i was one of the lucky people who worked for people who were very supportive and accomidating…my boss was very willing to work with me and willing to hold my job for me.
July 30th 2004 i finally had transphenodial surgery to remove my tumor (they went thru my lip and nose because they felt my nose was too small). It is now over 1 year later….i am down to 108 lbs, i have so much energy…no depression….and i dont mind looking at myself in the mirror…i am enjoying my friends and my boyfriend…(who stayed with me thru it all) And my family. I feel healthy mentally, emptionally, and physically. And i just got back into my size 2 jeans!!!
It was a crappy time…(as i am sure you all can atest to) but i learned a lot…..most importantly i was bombarded by good wishes and prayers….friends requested masses for me…a nun in brazil prayed for me…people who i never thought i touched their lives…took the time to wish me well…send an email..or call….I got to experience the wonderful loving nature of human beings and i was lucky to be supported by my family (my mom, dad, and two younger brothers) and my boyfriend throughout this entire tough journey.
This experience taught me to realize the strength i have as well as to appreciate the good and the bad in life. I was on hydrocortizone for about 8 months…i was lucky that my tumor was in its own little sack so my pituitary gland was not touched. In the end in took about 7 years to diagnose me..i think that if the dr. at 16 would have pursued the cushings idea nothing would have been found because it took so long for my symptoms to really peak…needless to say i love my PCP and my endo ..and that i changed gyno’s…
I just want to let anyone out there going thru this disease to know..you are not alone….and to take each day is stride…when you need help ask for it….and that this road can lead to a happy ending. God Bless!
ps- it is ok to feel bad about what you are going thru…it is a tough thing to endure…and when the docotors tell you there is noting wrong…..follow your gut…and you keep searching for the doctor that will listen… If there is anyone in the philadelphis of south jersey area who needs someone to talk to please feel free to email me…fapadula@hotmail.com…i will help you out the best i can!
Update November 6, 2011
Well- here is an update, after seven years of being Cushings free it has returned.
With in those seven years I married my college boyfriend and we now have a son- Nicholas who will be 2 in Decemeber. It has been a blessed and wonderful seven years. However right around when my son was turning 1 I started to notice symptoms again. Increase facial hair, the whole “roundness” of my body, buffalo hump. I decided I was going to work out hard, eat right, and see – I didnt just want to jump to any conclusions. I stuck to it- and nothing…..my hair started thinning again and the acne was coming back and then the missed periods…..so I went to my PCP- told them i needed the 24hr urine and wouldnt you know…..427 cortisol level (on that 0-50 scale)……here we go again.
So back to endo- now at Penn Pituitary Center…..it was another journey b/c the tumor wasnt definative on MRI, and it seems to be cycling…..but I was diagnosed with Cushings again- with the option of 2nd pit surgery or BLA…….after some months of trying to make a decision I went with the 50/50 chance of the second pituitary surgery on 10/26/2011.
It didnt work- my levels never came down in the hospital and I went home w/ out of range cortisol levels and no need for medication……BLURG……Sooooo on to the next step…..after I recover from this surgery I will most likely have the BLA- with the hopes of not having to deal with Cushings ever again. This time around has been a little more difficult just with being a mom and feeling sick- but I still continue to be amazingly blessed with a supportive family and husband and we are surrounded by love and support and for that I am beyond greatful.
I keep all of you in my prayers for relief and health- as I ( we all) know this no easy journey.
Many Blessings!
Fabiana
Update September 12, 2015
So to bring this up to date. My second pituitary surgery in 2011 was unsuccessful. January of 2012 I had both of my adrenal glands removed. Going to adrenal insufficiency was a very difficult transition for me. It took me nearly 2 years before I felt functional. As time went on I felt more human, but I haven’t felt healthy since that day. I can and do function, but at a lower expectation of what I used to be capable of….my “new normal”.
My husband and I decided to try for a second child…my pituitary was damaged from the second surgery and we needed fertility…after 8 months of fertility I got pregnant and we had our second son January of 2015.
In April of 2015 we discovered that my ACTH was increasing exponentially. MRI revealed a macroadenoma invading my cavernous sinus. The tumor is sitting on my carotid artery and milimeterrs away from my optic chasim. I was not a candidate for another surgery due to the tumors proximity to.both of those vital structures.
So September 1st of this year I started daily radiation treatments. I spent my 34th birthday getting my brain zapped. I am receiving proton beam therapy at the Hospital of the University of Pennsylvania. I am so lucky to live so close to an institute that has some of the rarest treatment options.
Again Cushing’s is disrupting our life, my husband goes with me every night to radiation while family takes turns watching the kids….I am now on my 18th year of fighting this disease. I never imagined it would get to this point.
But here we all are making the best of each day, fighting each day and trying to keep things as “normal” as possible. Blessings to all of you fighting this disease…my new go to saying is” ‘effing Cushing’s”! For you newbies…Fight, Advocate for yourselves, and find a doc who doesn’t dismiss you and hang on to them for dear life.
My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.
Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.
In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.
My symptoms kept getting worse with time.
In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.
As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.
In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.
Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.
We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.
I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.
I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.
I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.
I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…
Update December 12, 2013:
It’s been 10 years now since I had my “cure” for Cushings. I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy. I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.
I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back! Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.
Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings. God Bless to all!
My Thanksgiving Day was less stressful this year than I thought it might be, because I had my head examined the day before at Johns Hopkins at about 9:30 in the morning. By 1:30 in the afternoon, my endocrinologist there, a metabolic bone specialist, had emailed me that I was the proud parent of a 0.7mm lesion on the right side of my pituitary gland. All day Tuesday I had performance anxiety because I feared that after six months of testing every liquid my body could produce for excessive cortisol, I had finally been given the green light to undergo the Holy Grail of tests and have a look-see at the Master Gland. I feared that I wouldn’t be able to come up with the goods, but I managed to produce, and now I’m being referred to a neurosurgeon.
It’s been a very long process, even though the testing has only been a six month part of it. In 2001, I broke my collar bone while playing tennis. Granted, I fell down, but it’s not like I made a Boris Becker leap for the ball or anything. Then in 2003, my first stress fracture, followed by another one in 2005. Then a crushed wrist on another tennis court mishap–my feet got tangled up when I was moving backward, and within a week, I was having my wrist rebuilt with a titanium plate and several screws. Then there was the broken tailbone, followed by the upper arm compression fracture suffered while pushing a small car off an ice shelf in Ohio. And finally the L4 vertebra that I broke loosening the lug nuts on a tire I was changing with my still-healing broken arm.
After each incident, I would ask the doctors what could be causing all these weird bone breaks, and sometimes they would send me off for a dexascan to see if I might have osteoporosis, but the test always said no, and the doctors were always orthopedists of one sort or another. They would shrug and say that these things happen. After the upper arm (this past January), and the subsequent dexascan, the ortho told me that the test said I didn’t have osteoporosis, that if I wanted to try to learn more about the bone formation, I should see an endocrinologist, but he didn’t know of one to whom he could refer me. He did refer me to his colleague to have my osteoarthritic hip replaced. I’m 53, by the way. He told me that going to an endocrinologist was likely to yield nothing, and he opined that I was suffering from “Laree Martin syndrome,” if I need for it to have a name.
My gynocologist, who works in the same hospital center as Ortho 1, we now lovingly refer to him as Frick, referred me to an endocrinologist who also practices in the same hospital center. I got myself hooked up with her, and she very quickly determined that since I had broken not one, but all of the bones that are considered to be typical indicators of osteoporosis, despite multiple dexascans to the contrary, I had osteoporosis. Shortly thereafter, she discovered excess, but “unimpressive,” levels of cortisol in my system.
Ortho 2, we’ll call him Frack, saw me prior to my hip replacement, and I complained about my back injury the week prior. He pronounced that I had not broken my vertebra, but he offered to send me for an MRI, if that would make me feel better. I scheduled the MRI, had it in the evening, called his office in the morning to report that I had gone for the test, as he had asked me to do, and instead of leaving a message, I got put directly through to the doctor. Turns out that he was wrong, and it is possible to break your L4 vertebra pulling on a lug wrench with a still-healing compressions fracture in your upper arm . . . if you have osteoporosis. When I told him that he didn’t have to worry about my bones in general, because I was seeing an endocrinologist for that. I just needed him to be extra careful not to break anything when implanting the new hip. I told him that the endo specialist was working me up for Cushing’s, and he told me that I certainly did not have Cushing’s, because I wasn’t 100 pounds overweight and diabetic.
By September, the endo doc concluded that my results were equivocal for Cushing’s, but she encouraged me to go to Johns Hopkins to the metabolic bone specialist, since there wasn’t another good explanation for my osteoporosis, which had by that time been objectively diagnosed with a bone biopsy. She felt that she had no choice, clinically, but to treat my osteoporosis as post-menopausal in origin, even though my bone breaks began 8 years ahead of my menopausal symptoms. Off to Johns Hopkins.
The bone specialist took the history, again . . . did some more testing (blood, saliva, urine, again . . . ) and then consulted with the adrenal team, who agreed with her diagnosis of ACTH-dependent Cushing’s disease. Unfortunately for all of you who read these bios, it’s more complicated than just Cushing’s, because I had bilateral pulmonary emboili and a DVT in my leg when one of my stress fractures had me on non-weightbearing restrictions for six weeks. That little incident was also considered a fluke, until about six years later when I was diagnosed with an autoimmune condition that is also considered to be “rare.” It is a mouthful to say–antiphospholipid antibody syndrome (APS). It’s main risk is hypercoagulability, and its treatment involves lifelong warfarin (brand name Coumadin), which people mostly call a “blood thinner,” although it doesn’t really act that way.
I feel somehow more than lucky to have two fairly uncommon, fairly complicated conditions with fairly scarey treatment options. I feel like I need a Fairy Goddoctor to be able to properly manage my surgery and treatment, because of the risks associated with drug interactions with the warfarin, the higher risk of clotting that I already have from the APS, which is apparently compounded by Cushing’s, and my understanding that I’m not supposed to be mixing hormones, including steroids, with the warfarin. Nevertheless, it was good to know so quickly after the MRI that the result was that I flunked that test as well as I had flunked all the others previously. I thought I was going to have to stress over that for the entire long weekend, but no. Instead, I pretty much put it out of my mind until tonight, and now you’re getting the Reader’s Digest version of the last 12 years of my medical experience.
The doctors have exhausted my resilience with all of their certainty, which over the years I relied upon to conclude that I was just clumsy and that my weight struggles with those extra 25 pounds that could pack on in a couple of months, especially when I was recuperating from a fracture, without really changing my diet much, were probably associated with my inconsistent sleep and the fact that I will reach for pizza when I am feeling particularly low. So when I read here and there about the recovery process after surgery and how difficullt and complicated it can be, I have to admit that my first reaction was that I should quit work, take a year off, spend all my money on travel or whatever I would feel like doing, and then just commit suicide and be done with the whole thing. And that still has a sense of comfort associated with it when I remind myself of what I’m in for for the next maybe couple of years or more in recovery . . . and possible relapse . . .
But I have a 82 year old mother, and I”m her baby, and I witnessed her sorrow when my brother was killed in a motorcycle accident about 18 months ago, and I wouldn’t put her through that again. Instead, it’s my intention to take as much time off work as possible after surgery to let myself gather my emotional resources and get over the angry, bruised feeling that I have from both diagnostic processes that have lasted over a decade. I appreciate that this space is here for newbies like myself to say out loud what most of my friends and family either can’t or don’t want to hear. It doesn’t really matter so much that anyone is listening; I just need to say it.
Cheers!
Laree (who actually has Cushing’s disease, not Laree Martin’s syndrome)
Jordy is a British man who has been dealing with Cushing’s and many surgeries.
He finds rollercoasters boring, barely broke a sweat zip-wiring off the Tyne bridge and even a parachute jump did not raise his heart rate.
Just a few years ago even the thought of daredevil exploits would have terrified him, but now Jordy Cernik is frightened of nothing.
While that might sound an ideal scenario, the 38-year-old’s new-found bravery is actually the unexpected side-effect of surgery for a rare condition.
Cushing’s Syndrome resulted in the dad-of-two having an operation to remove the gland which produces adrenalin, the hormone which makes us feel scared.
He says: “I would never have had the guts to do any of this, but now nothing fazes me. I’m up for anything – I’m even thinking about doing a wing-walk on a plane too.
“I nearly did a bungee jump a few years ago, but I just couldn’t do it.
“Now I just take whatever is thrown at me and if a challenge helps me raise money for charity, the more daring the better.”
Over the past four months he has completed the parachute jump and zip-wired from the top of Newcastle’s Tyne Bridge and now he is getting ready to complete the last of a trio of challenges – next month’s Bupa Great North Run.
“The doctors didn’t tell me this could be one of the side-effects of the operation,” says Jordy. “But then the condition is so rare I don’t think they know everything about Cushing’s yet.
“Doing the skydive was the ultimate test. I thought that if I was ever going to get scared again then that would be the moment.
“But as we took off in the plane I felt nothing, and when I edged towards the door to jump I felt nothing, and even when I leapt out and pulled my parachute, I didn’t feel scared at all.
“It can be quite frustrating as well though.
“The first time I realised I had changed was when I went on the rides at a theme park with my kids and I just didn’t feel a thing. I just sat there, bored.”
However, the last of his hat-trick of challenges, the Run, will require him to push through the ever-present pain which he has endured for years as a result of Cushing’s.
Britain’s biggest mass participation event, for which The Daily Mirror is a media partner, takes place over a 13.1 mile course from Newcastle to South Shields.
But the syndrome has left Jordy, from Jarrow, near Newcastle, with arthritis, back problems and brittle bones. Worse still, the absence of adrenalin means he now lacks one of the body’s natural painkillers.
“I’m always in pain,” he says. “I’ve just had to learn to zone it out day-to-day and I’m going to have to do that even more when I’m on the run.”
Cushing’s affects around one in 50,000 people in Britain.
It causes a malfunction of the adrenal and pituitary glands which means increased amounts of corticosteroids are produced – often leading to massive, irregular weight gain.
In just three years 5ft 8in Jordy ballooned from 11st 5lb to almost 17st.
While his limbs remained slim, the former Territorial Army recruit saw the pounds pile around the major organs in his torso and head.
“I went through years of hell and I can only describe it as living in someone else’s body,” says the part-time radio presenter and events host.
“I developed this big round moon face and really quite large man boobs, which was so embarrassing.
“But there was absolutely nothing I could do about it. I could go to the gym six days a week and still couldn’t lose any of the weight.
“One of the worst things was that people would stare.
“Sometimes they’d take the mickey – often to try and make me feel better, by making light of things – but it would almost always hurt my feelings.
“And my career as a presenter suffered. I tried to play up to the character of being a big, jolly chap but I always felt I was too fat for TV, which is what I would have liked to do a lot more of.”
But it was the effect on his home life with wife Tracy, 43, and daughters Aimee, seven, and four-year-old Eive that for him was far worse.
“I had other really difficult symptoms which included profuse sweating which meant I couldn’t even hold my kids without wrapping them in towels first,” he says.
“Anyone who has children knows how hard that is, not to be able to do normal things. I often used to be in tears.
“Another symptom was extreme grumpiness, so I would find myself suddenly getting really angry and just exploding at them, plus I was always too exhausted to play with them. It was terrible.”
Jordy believes he can trace his symptoms back 15 years although his Cushing’s was only diagnosed in 2005.
He had visited his local surgery with a string of complaints, but by chance saw a different doctor one day and the syndrome was diagnosed.
“I don’t have any ill-feeling about that,” he says, “because the syndrome can be tricky to spot, partly because it is so rare.”
He went on to have both his pituitary and adrenal glands removed but needed a total of seven operations between 2005 and 2010 and not all went smoothly.
During one to remove his pituitary gland, which is inside the skull, the lining of his brain burst due to the stress of repeated surgery.
And while removing a rib to access the adrenal gland in his torso, his lung was punctured.
That wasn’t the end of the complications. He later developed severe meningitis and ended up on a life-support machine.
“But I still consider myself lucky,” he says. “The doctors told me, ‘You died twice really, you shouldn’t even be here’.”
Things have begun to look up in the past few years, however. The Cushing’s is in remission and Jordy has lost four stone.
His life hasn’t returned to normal entirely – he still has to take 30 pills a day, a cocktail of painkillers and hormones, plus drugs to slow the corrosion of his bones.
He has also been diagnosed with another rare condition, sarcoidosis, which creates nodules of irregular cells in the body and can cause serious complications. He’s convinced he has always had it but it has lain dormant until his body was at its most vulnerable.
At present the nodules can only be found on his skin and he’s being monitored to ensure that it doesn’t spread to his internal organs.
Thanks to the surgery, his life has improved enormously since 2010.
In July he had a breast reduction op which not only improved his appearance but also removed the dangerous accumulation of fat around his heart.
Part of this new chapter involves taking part in the Great North Run and raising money for the Cash for Kids appeal run by his local radio station Metro Radio.
The appeal aims to help children and young people in the North East who are disabled or have special needs, or those who suffer from abuse or neglect.
Jordy’s fundraising goal is a relatively modest £1,000, but for him joining the half marathon’s 56,000 participants on September 15 will be as rewarding as hitting his target.
“I really don’t know if I’ll be able to complete the course.” he says. “But I’m looking forward to it and I’m going to give it my best shot.
“Not feeling fear may feel like the power of a superhero, but what I really need for the Great North Run is superhero strength.”
The Bupa Great North Run is Britain’s biggest mass participation event and is organised by Nova International.
It will include world class athletes Mo Farah, Haile Gebrselassie and Kenenisa Bekele – plus 56,000 other runners.
The event is live on BBC One on Sunday 15th September between 9.30am to 13.30
He said she needed to start focusing on looking after herself a bit more in her long journey with tumours of the pituitary gland.
“I have a tendency to do too much for other people,” Mrs Dines said.
“It’s just me. It’s in me, it’s what I do.”
The altruistic devotion is central to her being nominated in the community spirit category in the 2013 Pride of Australia awards.
“There is no end to the depth of Kellie’s passion for people in need,” her testimony said.
“She inspires everybody she comes into contact with to be the very best they can be.”
Pituitary and pineal glands (Photo credit: Wikipedia)
Mrs Dines, 40, is the wife of Brad, mother of Carter, 10, and Hunter, 5, and has lived at Teesdale for two years after having spent her formative years growing up at Wallington and attending Geelong’s Matthew Flinders College. She spent 17 “hideous” years battling mystery ill health and receiving all sorts of diagnoses before the discovery of a non hormone-secreting tumour surrounding her pituitary gland, at the base of her brain.
The pituitary gland secretes hormones that influence the workings of many other glands.
She has twice undergone delicate surgery attempting to remove the tumour and now it is growing around her carotid artery.
Mrs Dines’ community devotions have ranged from volunteering at three consecutive Australian International Airshows to inspiring a Black Saturday bushfires appeal that generated two truckloads of food and goods for fire victims, and volunteering as state co-ordinator for the Australian Pituitary Foundation.
After having shifted to Teesdale, she started co-ordinating money-raising efforts for the community’s pre-school and primary school and ran money-raising events for a local single mum contending with breast cancer and a family that lost a child.
She said nomination in the Pride of Australia awards was humbling. “But it’s not why I do things,” she said.
Nominations in 10 Pride of Australia award categories close on Tuesday.
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.
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, 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.
Fabiana had transphenoidal surgery (pituitary) July 30th 2004. She had a recurrence after seven years of being Cushing’s free. A second pituitary surgery on 10/26/2011 was unsuccessful.
Another Golden Oldie, this bio was last updated 9/12/2015
Fabiana will be our guest in an interview on BlogTalk Radio Wednesday, October 21 at 6:00 PM eastern. The Call-In number for questions or comments is (657) 383-0416.
The archived interview will be available after 7:00 PM Eastern through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. While you’re waiting, there are currently 88 other past interviews to listen to!
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Well it has taken me a year to write this bio…and just to give some hope to those of you just going thru this process…I have to say that after surgery I have not felt better! I am back to who i always knew I was….the depression and anxiety is gone and I am living life like a 24 year old should!
I guess it all started when i was sixteen (hindsight is 20-20 i guess). My periods stopped i was tired all the time and the depression started. We all kind of just chalked it up to being sixteen. But my mom insisted something was not right. we talked with my gyno…who said nothing was wrong, I had a fungus on my head (my hair was getting really thin) and sometimes girls who had normal periods (in my case three years of normal periods) just go awry.
My mom wasnt hearing that and demanded a script for an endo. I went….he did blood work…and metioned cushings. But nothing came back definitive…so they put me on birthcontol and gave me some hormones and the chushings was never mentioned again because that all seemed to work.
As time went on my depression got worse, the shape of my body started to change-my face and stomach was the most noticeable- and my energy level kept going down. I kept going back to the doctors asking to be tested for mono..or something. I went to a psycologist….but i knew there was no reason for my depression. Two of them told me “i had very good insight” and that I didnt need them. I started getting more anxiety..especially about going out socially.
High school ended and my typical optimistic personality started to decline. I put on a good act to my friends but my family was seeing me break down all the time. I went away for college (all the while gaining weight). My sophmore year I had a break down..I called my family crying that i needed help. I couldnt beat my depression. I didnt drink in college because i knew that would mean instant weight gain, i barely went out…i exercised everyday..hard….i joined weight watchers…i stuck with it. I was at 103 lbs….that crept up to 110…that crept up to 117…each time my weight goal would be “ohh if i could just get back to 108..112…115” with each weight gain my original weight goal would get higher and higher.
Internally i felt like I was constantly under a black cloud..i knew there was no reason why i shoudl feel this way..i was doing great in school, i had a supportive family, an amazing boyfriend and great friends…why was i depressed? I was becoming emotionally draining to the people closest to me…I would go home a lot on the weekends…i was diagnosed with PMDS….like severe PMS..and was given an antidepresant…i hated it it made me feel like a zombie…i stopped taking it and just made it apoint to work on fighting the depression….and the weight gain.
When i was done college i was about 120 lbs. My face was getting rounder and rounder..i was noticing more hair on my face and arms…and a hump between my shoulder blades and the bottom of my neck. My mom saw a tv show about Polycystic ovarian syndrome and felt that maybe that was what was going on with me…i went to my PCP with this and she said it was possible and that i should to talk to my gyno….I am 4’8 and at the time weighing close to 125..i talked to my gyno and she said I was not heavy..that i was just “itailan” ..i told her my periods were getting abnormal again even w/the birthcontrol and that i was so tired all the time and my arms and legs ached. I also told her that i was bruising very easily…and that the weight gain would not stop despite my exercising and following the atikins diet very strickly for over 6 weeks. My boyfriend and I decided to try the diet together..he lost 35 llbs in 6 weeks..i lost NOTHING! I went back to my PCP who ordered an ultra sound of my ovaries…..NOTHING.(i kept thinking i was going crazy and that it was all in my head)….she also decided to do some blood work…and as i was walking out the door she said..”you know what..i am going to give you this 24hr urine test too. Just so that we cover everything”. I just kept thinking please let something come back ….please dont let this be all my fault…please dont let this be all in my head…..please dont let me be crazy. When i got the test results back it turned out that the 24hr urine test was the one test i needed to get on the right track to finding what was wrong. My cortisol level was 3x’s the normal.
I went to an endo…by the time i got to the endocronoligist i was up to 130…i could not work a full day without needing a full day of sleep and my body was aching beyond description. I was crying all the time…in my room…and was becoming more and more of a recluse…i would only hang out with my boyfriend in our houses. I looked my symptoms up on the internet and saw cushings…that was it! I went to the endo and told him..i think it is cushings….he said he had only saw it one other time and that he wanted to do more tests. I got CAT scans, x-rays, MRI’s….my adrenals my pituitary my lungs….he did a CRH stimulation test which was getting blood work done every fifteen minutes for 90minutes….it took weeks to get that test scheduled..no one had ever heard of it and therefore did not know how to do it…..finally after 3 months of tests my dr. felt he had enough evidence to diagnos me with cushings disease (tumor on my pituitary) I was diagnosed in March of 2004. By this time i was about 137 lbs i had to work part time (i am an occupational therapist for children..i do home visits….i could not make it thru a whole day)
In April i had to change to office work…i could not lift the children and i could barely get up off the floor. I have to say i was one of the lucky people who worked for people who were very supportive and accomidating…my boss was very willing to work with me and willing to hold my job for me.
July 30th 2004 i finally had transphenodial surgery to remove my tumor (they went thru my lip and nose because they felt my nose was too small). It is now over 1 year later….i am down to 108 lbs, i have so much energy…no depression….and i dont mind looking at myself in the mirror…i am enjoying my friends and my boyfriend…(who stayed with me thru it all) And my family. I feel healthy mentally, emptionally, and physically. And i just got back into my size 2 jeans!!!
It was a crappy time…(as i am sure you all can atest to) but i learned a lot…..most importantly i was bombarded by good wishes and prayers….friends requested masses for me…a nun in brazil prayed for me…people who i never thought i touched their lives…took the time to wish me well…send an email..or call….I got to experience the wonderful loving nature of human beings and i was lucky to be supported by my family (my mom, dad, and two younger brothers) and my boyfriend throughout this entire tough journey.
This experience taught me to realize the strength i have as well as to appreciate the good and the bad in life. I was on hydrocortizone for about 8 months…i was lucky that my tumor was in its own little sack so my pituitary gland was not touched. In the end in took about 7 years to diagnose me..i think that if the dr. at 16 would have pursued the cushings idea nothing would have been found because it took so long for my symptoms to really peak…needless to say i love my PCP and my endo ..and that i changed gyno’s…
I just want to let anyone out there going thru this disease to know..you are not alone….and to take each day is stride…when you need help ask for it….and that this road can lead to a happy ending. God Bless!
ps- it is ok to feel bad about what you are going thru…it is a tough thing to endure…and when the docotors tell you there is noting wrong…..follow your gut…and you keep searching for the doctor that will listen… If there is anyone in the philadelphis of south jersey area who needs someone to talk to please feel free to email me…fapadula@hotmail.com…i will help you out the best i can!
Update November 6, 2011
Well- here is an update, after seven years of being Cushings free it has returned.
With in those seven years I married my college boyfriend and we now have a son- Nicholas who will be 2 in Decemeber. It has been a blessed and wonderful seven years. However right around when my son was turning 1 I started to notice symptoms again. Increase facial hair, the whole “roundness” of my body, buffalo hump. I decided I was going to work out hard, eat right, and see – I didnt just want to jump to any conclusions. I stuck to it- and nothing…..my hair started thinning again and the acne was coming back and then the missed periods…..so I went to my PCP- told them i needed the 24hr urine and wouldnt you know…..427 cortisol level (on that 0-50 scale)……here we go again.
So back to endo- now at Penn Pituitary Center…..it was another journey b/c the tumor wasnt definative on MRI, and it seems to be cycling…..but I was diagnosed with Cushings again- with the option of 2nd pit surgery or BLA…….after some months of trying to make a decision I went with the 50/50 chance of the second pituitary surgery on 10/26/2011.
It didnt work- my levels never came down in the hospital and I went home w/ out of range cortisol levels and no need for medication……BLURG……Sooooo on to the next step…..after I recover from this surgery I will most likely have the BLA- with the hopes of not having to deal with Cushings ever again. This time around has been a little more difficult just with being a mom and feeling sick- but I still continue to be amazingly blessed with a supportive family and husband and we are surrounded by love and support and for that I am beyond greatful.
I keep all of you in my prayers for relief and health- as I ( we all) know this no easy journey.
Many Blessings!
Fabiana
Update September 12, 2015
So to bring this up to date. My second pituitary surgery in 2011 was unsuccessful. January of 2012 I had both of my adrenal glands removed. Going to adrenal insufficiency was a very difficult transition for me. It took me nearly 2 years before I felt functional. As time went on I felt more human, but I haven’t felt healthy since that day. I can and do function, but at a lower expectation of what I used to be capable of….my “new normal”.
My husband and I decided to try for a second child…my pituitary was damaged from the second surgery and we needed fertility…after 8 months of fertility I got pregnant and we had our second son January of 2015.
In April of 2015 we discovered that my ACTH was increasing exponentially. MRI revealed a macroadenoma invading my cavernous sinus. The tumor is sitting on my carotid artery and milimeterrs away from my optic chasim. I was not a candidate for another surgery due to the tumors proximity to.both of those vital structures.
So September 1st of this year I started daily radiation treatments. I spent my 34th birthday getting my brain zapped. I am receiving proton beam therapy at the Hospital of the University of Pennsylvania. I am so lucky to live so close to an institute that has some of the rarest treatment options.
Again Cushing’s is disrupting our life, my husband goes with me every night to radiation while family takes turns watching the kids….I am now on my 18th year of fighting this disease. I never imagined it would get to this point.
But here we all are making the best of each day, fighting each day and trying to keep things as “normal” as possible. Blessings to all of you fighting this disease…my new go to saying is” ‘effing Cushing’s”! For you newbies…Fight, Advocate for yourselves, and find a doc who doesn’t dismiss you and hang on to them for dear life.
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