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Melissa (MelissaZ), Steroid-Induced Cushing’s Bio

November 1, 2025

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

Hello, my name is Melissa and I have Cushings due to long term Steroid use.

In April of 2012, I was diagnosed with type 2 diabetes and anemia.

About a month after my diagnosis, I started to have repeated sinus infections in my left nostril. After going through a number of antibiotics, my primary did a Cat-Scan which showed a growth the size of a quarter behind my eye.

I was diagnosed with a rare auto-immune disease called Idiopathic Orbital Inflammatory Syndrome (IOIS). Treatment for this was a high dose of Prednisone (steroid. 80mgs per day), which I was being tapered off of but because I was being tapered too fast, the IOIS relapsed so I went back on the high dose again and then tapered from there.

I have been off of the steroids now for 4 months and left with Cushings. I gained 120lbs which is the major of my complaint. I am moody, I do have irregular menstrual cycles, sore muscles (especially in the morning when I wake up), fatigue, memory loss, and a slight hump.

I don’t think my symptoms are as severe as the majority of people here, however, I am 318lbs and extremely misereable with my weight. I have started a nutrition regimen and hoping to drop at least 10-20lbs so that I am more comfortable to work out. I pray everyday that this will go away sooner than I am told it will.

Unfortunately, I am still having issues with my eye as well as problems keeping my sugar levels down. I’m up for any advice and will be more than grateful to share and compare stories with others.

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Susan W, Pituitary Bio

September 10, 2025

MaryO Adrenal, Diabetes, Golden Oldies, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , Leave a comment

A Golden Oldie

After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs).  My Pituitary Tumor was removed on 10/20/11.

My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12.  I also have noduals on both my adrenals.

Other symptoms:  obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.

Susan submitted a second version of her bio.

My testing -> diagnosis -> surgery journey took 2.5 years.  I have always had a weight problem.  All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less.  But when I reached 375 lbs I knew something had to be done.  Things were way out of control.  I could no longer handle this by myself, I needed HELP.

I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat .   So, I asked my Primary Care Doctor if she could test my Cortisol level.  She just laughed and said I would have to go to an Endocrinologist (Endo).  She did not even provide a referral.  Through my insurance company I found an Endo.  On 7/3/09,  my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.

When the test results came back, they showing excess Cortisol.  This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests.  Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test..  (Dr Findling said I looked like I had Cushings for over 10 yrs.)  This was followed by Ostrascam and PET Scan.  Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon.  The first doctor I seen in IL was a bust.  Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.

Now in recovery, I still get weak, tired and sleep a lot.  I have been using a walker and cane to get around.  Interesting to see that other Cushings also have problems with mobility, aches and pains.  I hope this gets better.  I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon.  I am off my High Blood Pressure and 2 of the 3 Diabetes meds.  I have lost 30 lbs in the 7 wks since surgery.   I can;t wait, 1 more wk before I can start swimming again.

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Voices from the Past: Jestina (jestina902), Pituitary Bio

July 2, 2025

MaryO Diabetes, PCOS, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , , , , 2 Comments

Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.

About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.

When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.

My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.

Thank you so much for reading my bio!

Judi L (judi), Undiagnosed Bio

May 1, 2025

MaryO Diabetes, Hashimoto's, Undiagnosed , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

I have been seeing the endo for the last couple of weeks.  Lots of blood tests, saliva test, 24 hour urine test.  Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.

Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance.  First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH.  Doctor said possible cushings.  Have had extreme fatigue, beard on chin.  Muscle and bone pain consistently.  Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia.  Appt. with endo tomorrow to get results of 24 hr. urine test.  Salavia test said was normal.

Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all.  She said that I had the hump, muffin top, and belly fat, lean arms and legs.  Eyes are puffy all the time now.  Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free.  Eat lots of vegetables and fruit as well as a little protein.  Have not had a mri or cat scan yet.  Probably will be next on the list.  Will post after my doctor’s appt. tomorrow and update my bio.

I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.

Lisa (Lisa), Pituitary Bio

April 29, 2025

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

I was diagnosed with Cushings in Feb 2011 at the age of 30, after 6 months of inconclusive testing to find out what was going on with me.  Bone marrow biopsy, CT scans, MRI’s, urinalysis, bloodwork, you name it, it was done.  The first symptom I noticed was my left foot swelling (edema) after a workout injury.  The swelling remained long after it should have, and I thought I damaged my lymphatic system.  A trip to the endocrinologist and a CT scan proved that untrue, but he did notice I had an enlarged spleen and a high red blood cell count.  He didn’t seem to think that was a concern, but around that time I also began to experience a constant pain in my right flank.  So I went to a gastroentrologist.  Then a hemotologist, then a cardiologist, etc.  My final diagnosis came after my hemotologist ran a urine sample and noticed a highish level of cortisol.  She sent me back to my endocrinologist.  Before I went, I started a heavy Google search for what high levels of cortisol could mean, and came across Cushing’s.  I knew that was what I had.  I had been diagnosed with a prolactinoma 4 years prior (which I had told every doctor I had seen) and no one made the connection.  I demanded my endo test me.  He didn’t want to, telling me that I hadn’t gained weight and that people who had Cushing’s were really sick.  I demanded, and he gave me a supression pill to take the night before I came in for bloodwork.  He called me with the results a couple of days later, accusing me of not taking the pill.  Of course I took the pill, I said.  He said that the pill hadn’t suppressed my levels as it should have, but he didn’t believe it, and wanted me to then do a 24hr cortisol urinalysis.  I agreed, but also scheduled an appt with a neurosurgeon.  The neurosurgeon had the same hesistation, but also did the 24hr test.  A week later, the tests came back in.  My cortisol levels were 8 times what they should have been.  I definitely had Cushing’s.

I had transsphenoidal surgery a month and a half later.  I spent a week in the hospital that can only be described as hell.  My body crashed hard and every part of me ached.  The next four months proved equally as challenging, my energy being non-existent and my replacement dosage being difficult to keep correct.  But a year and four months later I’m very close to being off the replacement dosage, and feeling back to normal.  Thank goodness for Cedars Sinai pituitary center for their attentiveness and care.

The biggest lesson I learned was to trust yourself.  I did not gain weight when I was sick.  I did begin to develop a moon face and a small tummy, but my weight remained constant.  I was waking up at 3 in the morning every day, my blood pressure spiked, my muscles weakened, I bruised easily, I lost hair on my head, my skin became mottled and thin.  I don’t know if the weight gain would have happened eventually or not, but I truly believe I wouldn’t have stayed alive long enough for that to happen… the change from healthy to sick happened so rapidly in my case that if it kept up I doubt I would have lived much longer that a year or so.  I worry about recurrence every day, and have had numerous visits to the ER since surgery due to adrenal crisis, but at least I know what to do when that happens and can take care immediately.  And as I’m sure most of you would agree, I treasure every healthy day.

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TONIGHT! Interview with Fabiana

October 21, 2015

MaryO Adrenal Surgery, BlogTalkRadio, Golden Oldies, Pituitary, Pituitary Surgery, radiation, Recurrence, Treatments, Update , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

 

interview

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!

~~~

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.

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Anthony G, Pituitary Bio

May 7, 2013

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

The opening in a GE Signa MRI machine

The opening in a GE Signa MRI machine (Photo credit: Wikipedia)

58 year old male.

In 2009 was in excellent health. Have suspected something wrong with me for two years. Just was not feeling like my old self.

Diagnosed with Cushings October 8th, 2012. Developed symptoms of: Stomach extension (looked like I was pregnant), round face, skin easily bruses and tears, edema on feet and legs, high blood pressure, depression, brittle hair and hair loss, lack of concentration, & blury vision. Cat scan and MRI were negative, IPSS proved positive for Cushings.

Pituitary surgery performed on December 4th, 2012. Two microedenomas identified and removed.

Recovery pending.

Laura C (Laura), Pituitary Bio

May 6, 2013

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

In the early part of 2007 I was feeling very tired, was gaining weight even though I was eating 800 – 1000 calories a day and exercising 1 hour per day.  I would go to my doctor and she would dismiss me inferring that I was just an overweight, middle aged woman looking for a quick fix to loose weight and control my diabetes.  This went on for several months with me seeing her every 3 or 4 weeks with the same complaint.

Finally in mid 2007 I said enough was enough and demanded that she order some blood tests.   Well, she ordered  the 24 hour urine collection test for cortisol and lo and behold, my cortisol levels were off the chart.  I was immediately referred to my endo and after ruling out many other things with MRIs, CAT scans and full body scans with radioactive injections,

I was referred to my neuro surgeon and he saved my life.  The beginning of December of 2007, I had surgery to remove 1/2 of my pitutary gland that had micro (benign) tumors.  12 hours after surgery, my cortisol levels wer down to the high “normal” range.

Today, 5 years later, I have no cortisol issues at all and now my endo says I have a “history of Cushings disease”.

Coleen (EyeRishGrl), Pituitary Bio

May 4, 2013

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.