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

July 2, 2026

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!

Robyn N (Robyn), Adrenal Bio

June 30, 2026

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

A Golden Oldie

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Hi!  My name is Robyn and I am a 48 year old wife, mother, daughter, sister, aunt, 1st grade teacher and a recovering Cushing’s patient.

My story is so very similiar to the others on this site but because they helped me so tremendously, I felt that I needed to add my own.  Until I was 40 I was extremely healthy and extremeley thin (92-100lbs. on a 5ft. frame)  My menstrual cycle had been like clockwork.  I had normal periods every 26 days.  I had had no problem getting pregnant and was the proud mother of a daughter and a son.  I had never had PMS or pain with my periods.

This all changed around 40.  My periods started becoming very irregular, I had severe cramps, crazy PMS (my husband said it was like Linda Blair with her head spinning around), and heavy bleeding.  I was diagnosed with fibroid tumors.  Dealt with that with hormones but by the time I was 45 I had Premature Ovarian Failure and the pain had become incredible and the bleeding was almost to the hemorraging point.

I had a hysterectomy in July of 2007 (I was 45).  One month later in August of 2007) I was getting out of my bathtub, slipped and fell and broke my acetabulum (hip socket).  I spent 14 weeks non-weight bearing in bed and walking to the bathroom with a walker and in horrible pain until it was decided that I would have to have a total hip replacement.  It was another 9 months before I recovered from that.  By that time my weight had steadily increased.  I thought it was due menopause that I had gone through as a result of the hysterectomy and not being able to walk much less exercise in the last year and a half.

In December of 2008 I decided to have a tummy tuck and a breast reduction because of the weight gain.  In January of 2009, when I went for my post op appointment with my plastic surgeon, I was told that breast cancer had been found in the tissue removed in the reduction.

In March of 2009, I had a mastectomy.  At that time, the plastic surgeon started my reconstruction by putting in a tissue expander.  I had poor healing and all the incisions opened so I had the expander removed.  Since then my weight has increased dramatically.  I got the moon face, the red chest and neck, the buffalo hump and stomach that looks like you are 9 months pregnant.

During this time my primary care physician just left her practice with no forwarding address.  I waited for several months to see if she would resurface in another practice and when she didn’t I had my oncologist recommend another internist.  I saw her in Feb. 2010.  She asked me what my biggest complaint would be and I told her it would be my weight gain in my stomach and how my face and neck looked.

My mother has Multinodular adrenal hyperplasia and I told my doctor that my mother thought I had Cushings.  She told me she thought my mother was right.  She did blood tests and called me to tell me that my cortisol levels were sky high and that she was referring me to an endocrinologist.  She also had me do a 24 hour urine test and a 1mg. dexamethasone suppression test.  Both were indicative of Cushings.  The first time I saw Dr. Rolbands he looked at me and said I was a classic Cushings case and sent me for a CT scan.  I had the scan and I had a tumor in my left adrenal gland.  I went swiftly down hill with symptoms.  The leg pain and fatigue became overwhelming.

By the time I had my surgery, I could hardly walk across the room and my blood pressure was 168/110 taking 2 blood pressure medications.  I had my left adrenal gland taken out on June 29th, 2010.  I am now recovering.  Dr. Rolband is very pleased with my progress in 2 weeks.  My blood pressure was 90/70 and took me off one medication.  I have lost 6.1 lbs. and the pain in my legs had gone away.  All very positive.  I started weaning from the prednisone and that has not been pleasant.  I went from 10 mg. to 7.5 yesterday and I had diarrhea, nausea, body aches and pains.  I’m better than I was before the surgery but I’m ready to feel “normal” again.

Contact Robyn

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Kirsty (kirstymnz), Ectopic Adrenal Bio

June 25, 2026

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fabiana, Pituitary Bio

June 24, 2026

MaryO Adrenal Surgery, Interview, Pituitary, Pituitary Surgery, radiation, Recurrence, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

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

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!

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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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Magdalena, Food-Dependent Cushing’s Bio

June 23, 2026

MaryO Adrenal, Adrenal Surgery, Ectopic, Food-Dependent Cushing's, GIP-Dependent Cushing's, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 8 Comments

Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.

A Golden Oldie last updated 01/22/2008.

~~~

Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.

I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.

I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.

When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.

Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.

At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.

I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.

Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.

I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…

At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.

It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.

The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.

The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.

I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.

I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.

I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.

If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.

The most important advice i have to give is this:

    1. GO TO A TEACHING/RESEARCH HOSPITAL!!!
    2. If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
    3. IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
      • the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).
      • I use stevia instead of sugar because its natural (health food isle.)
      • alcohol really hurts now, so only a little wine occassionally.
      • lots of yogurts.
      • every couple days a mixture of senna laxative and stool softener (not too often)
    4. Remember the squeekiest wheel gets the grease.

Lee B, Ectopic (pituitary and lung tumor) Bio

June 21, 2026

MaryO Adrenal Insufficiency, Ectopic, Empty Sella, Golden Oldies, Pituitary, Thyroid , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Another Golden Oldie, Lee had both pituitary and lung tumors.  This bio was originally posted 06/07/2008.

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Whee1 where to start!. During 2002 noticed that I had extreme daily hair loss, weight gain even while on diet, depression and general feeling of not being well and decreased sleep and change in sleep pattern. Went to a psychologist who said I was “sane” and diagnosed me with depression related to organic disease.. but what? the fatigue increased – looked like a walking zombie and could barely make it through the day. I worked in a very high powered job. Started experiencing rapid heartbeat – and landed up twice in the ER. Before going to the cardiologist I had a chest xray and saw a shadow on my lung. As an ex-smoker I was concerned and ordered a CT with contrast. I am an RN with a background in Oncology. to cut a long story short, landed up at the oncologist who agreed with me regarding the need for a biopsy. I had to fire my GP who told me to wait another 6 months and do a repeat. I diagnosed myself with a carcinoid tumor, had the upper part of my right lung removed.

I kept on complaining of increased symptoms – moon face, fatigue, headaches, joint pain etc. Got diagnosed with sleep apnea. My oncologist pooh poohed everything but further staining of my lung tumor indicated that it was secreting ACTH – Cushings!

Had a brain MRI – my sella is totally empty and I have a 7mm tumor – not sure what even after 3 MRI’s. Had a full endocrine workup – the endocrinologist siad everything was fine! HA! Turned out I have Hashimoto’s with thyroid cancer – just had that removed. My thyroid was so swollen including the lymph nodes which made me suspicious for metastases- that they could not visulize the Recurrent Nerve – so now I have permanent vocal cord damage and cannot work.

Before this I decided to go to see Dr Friedman. What a blessing. I have adrenal insufficiency, he thinks intermittent Cushings from another carcinoid tumor, who knows where and extreme growth hormone deficiency. I need to have the pituitary tumor removed but am awaiting recovery after my thyroid operation.

I feel terrible – cannot really function, cry all the time, have severe headaches, joint aches, nausea etc. I hope and pray that the pituitary operation will fix up my problems.

Joseph (joeysauce), Pituitary Bio

June 19, 2026

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Contact Joseph

Joseph may be interviewed in an upcoming BlogTalkRadio show.

ORKitty, Pituitary Bio

June 14, 2026

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

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

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

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

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

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

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

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

Oregon Health Sciences University.

Oregon Health Sciences University. (Photo credit: Wikipedia)

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

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

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

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

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

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

Jenny (Jenny), Adrenal Bio

May 19, 2026

MaryO Adrenal , , , , , , , , , , , , , , , , , , , , , , , , , , , 10 Comments

Hi I am a 34 year old female who has just been diagnosed with Cushing’s Syndrome.  I am married with two children ages 10 and 4.  My husband is an active duty Marine and I am a former Marine.

I’ve always been healthy up until now.  I had pretty much a yawn worthy medical history and I wish I still did.  I guess it started two years ago when I started having to use the bathroom frequently at night.  I did go to the doctor and they just told me to quit drinking before bedtime.  I chalked it up to having children and maybe just a weak bladder.  I wasn’t thinking rare disease.

Then I noticed that I started to gain weight and my close weren’t fitting right at all.  I chalked that up to sitting at my desk job all day and not getting enough exercise.  I did go to the doctor to have my thyroid tested and it came back normal.  So once again I am thinking it is me and I just need to exercise more.

My husband received orders to California and we moved here in July of 2012.  By this time my emotions are all over the place, my weight keeps creeping up but I think it is just stress.  Determined to get back in shape I start exercising everyday at 630 in the morning.  Normally I am not a morning person by any means but since we moved here I find it hard to sleep.  I worked out for three months following an exercise regiment but the weight stayed on.  My periods started to be further in between and would only last a couple of days, I went to the doctor for that as well.  I was told there is “irregular” periods and then there is “irregular” periods and mine were not that bad.  I had them test my thyroid again, it was normal.

Once again determined to beat the weight I started walking vigourously and watching my calorie intake.  I noticed that I would have tingling in my toes at times and that my calves seemed weak.  I thought I pulled a groin muscle but I didn’t let it slow me down I just kept going.  My face started to get rounder and puffier, my skin seemed so thin that I could see all of the vessels.  I knew something was wrong but I couldn’t put my finger on it.

I started to do my research on the internet and that is when I discovered Cushing’s.  But I thought it is so rare I can’t have this.  I started going to a Chiropractor for neck pain and when they took my blood pressure they were so alarmed they took it a couple of times to double check.

In March I went back to the doctor and told them to test my cortisol levels.  My husband was due to deploy in April so he planned a surprise vacation to Angel’s Camp in Northern California.  By this time I can hardly walk because of my pulled groin muscle, but I was determined to have fun with my family.

The second day we were on vacation I could hardly walk so I went to prompt care and had x-rays done.  The x-rays did not show anything so they sent me on my way with crutches.  By the 4th day of vacay I stayed in bed resting because I really couldn’t walk.  I got up to use the restroom and I had the crutches and fell backwards.  I ended up fracturing my hip.  I had surgery and told the doctors I was currently getting tested for Cushing’s and that my 24 hour urine test came back abnormal.

They had a really hard time keeping my blood pressure under control during my hospital stay.  While I was on vacation the endocrinologist office had called me to schedule an appointment but first I had to have another 24 hour urine test and dexamethasone test done before the appointment which was scheduled for April 23.  Well upon our arrival back home I was referred to Orthopedics because of my hip.

Ortho took x-rays and it was determined that after the surgery my hip was not aligned right and a second surgery ORIF was needed. It was conveniently scheduled for April 23 (the day I was supposed to see Endo).  I had my second hip surgery done and while I was in the hospital they were so concerned with my heart rate and blood pressure they did a CAT Scan for pulmonary embolism.

Well thankfully I did not have a PE but they did discover a nodule on my left adrenal gland.  I am having it removed on June 11th and from what I’ve read I am terrified of the aftermath.

Is there any good news out there?  I really hope so, I just want to be healthy and enjoy life again!

Christine (Christine S), Pituitary Bio

May 9, 2026

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

I don’t know really where to start.

My life has changed a lot in the past year.  Last August, I was diagnosed with Cushing’s but if it wasn’t for my boyfriend watching a special on Cushing’s I would still be battling the symptoms today.  About 5 years ago I started to gain weight.  I’ve always been very active and eating  protein diet. I would exercise 5 -6 times a week and still gain weight. It didn’t make any sense to me. I  had a personal trainer and he didn’t understand why I wasn’t losing wieght. My stomach continued to get a bigger pouch. I looked pregnant.  Over the course of the past few years my weight went up and down.  Then I started bruising very easily. People probably thought I was in abusive relationship which was not the case. I had my blood tested for being anemic. My white and red blood cell count went up and down. The doctor’s did not know what was going on and sent me on my marry way.

July 2012, my life changed. My boyfriend caught the end of special on  Cushing’s. He asked me if I’ve ever been tested for it? I said “No”!! I  was telling my mom about it and how my boyfriend felt I should get tested for it. I really didn’t want to go to my doctor and say test me for Cushing’s. She told me to go get tested. The more I researched it the more I realized I may have this. I finally made an appointment. I went to my doctor and highlighted all the related systoms. I had 11 out of 13. She believed me and started testing me. After all the urine, blood, CT and MRI scans. They diagonosed me August 2012.

I must say I’m lucky things fell into placed. It wasn’t long after my diagonses I was making appointment with Dr. Q at John Hopkins University to have my tumor removed. I

Location of the pituitary gland in the human brain

Location of the pituitary gland in the human brain (Photo credit: Wikipedia)

He would have to remove my gland if he wanted to remove the lesion. Which means I would not have any hormones. He did not want to take that away from me since I’m only 28 and have a lot of life ahead of me.  6 months post surgery I’m still taking Hydrocortisone. They are slowly weaning me off the drugs.  I can see a few changes. My memory and concentration is coming back. I now have definition back in my face. My weight is still up but that’s due to steriods. I hope that comes down once I’m off.

I beleive I was diagonosed at the right time. It seems like my symptoms took a turn for the worse in a matter of month after I was diagonosed. I wonder today what my life would be like if my boyfriend never saw the special and I never had the surgery. Dr. Q and him saved my life!!!   I just pray everyday that the lesion does not turn into Cushing’s. So far, I’m in remission!!!!

One note to all my fellow Cushie’s ~ You have to fight for yourself. Cushing’s is hard to diagonose. If you’re doctor’s don’t believe you find someone who does. Don’t give up!!!

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