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Trish D (trishtd), Undiagnosed Bio

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I am the mother of a young woman who has been ill for over fifteen years.

As a very young woman – at her 21st birthday and engagement party, she was a size ten and in very good health.  She was a healthy child who grew up in a home where sound nutrition was practised. This is an endeavour she has carried into her own married life, leading a very healthy lifestyle and preferring organic food.

She has never smoked, drunk or used any illicit substance.  She ought be very healthy.

Over the past few years she has been increasingly ill.  Extreme fatigue, massive weight gain, in the upper body and around what used to be her waist.  She has the classic moon face, with no distinguishable jawline or cheekbones. She has a great deal of fat around her neck and a defined ‘buffalo hump’.

She has had a variety of ‘tests’ done by conventional pracitioners, with a diagnosis of Poly Ovarian Cystic Syndrome.  I believe she has Cushings and have encouraged her to seek alternative help.  She has ‘given up’ on doctors as she feels as if she has been treated with disdain.   She has a remarkably positive attitude and a husband who is very loving and supportive.

She does not have the ‘stretch marks’ of Cushings, but my understanding is that that is not a prerequisite.  I have become increasingly concerned about her each time I visit, which is at times, with a few months between seeing her and cried all the way home after the last one, such is the increasing change I see in her.

I am concerned the outcome will be fatal and have finally encouraged her to see another doctor here.   I want to take her to a doctor who is holistic in their attitude, something that seems hard to find.

She is now 40 and nearing the end of her potential child bearing time. I am sad for her that a misdiagnosis and frustration at achieving no result, will not only potentially be fatal, but that the goal of motherhood for her, can not be achieved.

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Margaret D (MargaretD), Pituitary Bio

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Original Bio:

My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.

Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.

In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.

My symptoms kept getting worse with time.

In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.

As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.

In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.

Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.

We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.

I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.

I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.

I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.

I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…

Update December 12, 2013:

It’s been 10 years now since I had my “cure” for Cushings.  I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy.  I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.

I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back!  Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.

Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings.  God Bless to all!

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Miriam, Undiagnosed Bio

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golden-oldie

Hi. I am M and I have had healthy problems for as long as I can remember.

It started when I was 10 with severe anxiety, depression and panic attacks. Luckily, I don’t remember most of the details, but I remember being under the care of a child psychiatrist and a psychologist. I was on a cocktail of medications for about a year. As some point, my mother read a bunch about the dangers of these medications and somehow weaned me off of them. I remained under the care of my psychologist for a year or two after that.

I think we hoped at that point that things would go back to normal, or something like that, but sadly, we were very wrong. A couple of months (possibly a year) later, I was diagnosed with diabetes, shortly before my 12th birthday. This was 12 years ago, when type two diabetes wasn’t often (if at all) diagnosed in kids that age. It took the doctors a while to determine if I was type two or type one, but they eventually settled on type two. In reality, it barely made a difference, as I was on insulin and oral medication- in essence being treated for both types.

Again, I wish I could say that this was the end of my health problems, but it wasn’t. For starters, my insulin resistance was (and still is) so bad that I am on enormous doses of insulin just to maintain a non-dangerous blood sugar level. I have  been plagued by nasty skin (bacterial, yeast and abcess) infections since high school requiring hospitalization from time to time, and anti-biotics terribly frequently.

I was diagnosed with PCOS at some point, having all of the typical symptoms: facial har (I actually bought myself a hot wax pot to avoid the cost and nuisance of going to get it all removed every week or two!). My period has never been regular. I have gone as many as six months without it, but it can be more frequent also. Obviously, I am quite heavy and have struggled with weight my entire life. Dieting is a horrible situation, as it takes extreme effort for me just to maintain my weight.

About two years ago I had terrible gallstones attacks, finally having my gallbladder removed after a week in the hospital with a gallbladder infection. I also have problems with nausea and heartburn which can be very severe at times. About 10 months ago I was diagnosed with an ulcer.

At some point my endocrinologist (whom I see for the diabetes) asked about my family history at length, and then concluded that it simply didn’t all add up. I do have a family histoty of obesity and type two diabetes on both sides of my family, but nobody has ever had a problem before 45-50, other than gestational diabetes. My siblings are on the heavy side, but not obese like I am. I don’t eat differently than they do, I don’t live differently than they do. He ordered a 24 hour urine test, assuring me that he is sure it is nothing but he wants to be thorough. I pressed him for details and he admitted he is testing my cortisol levels as he suspects they may be high and causing some of my problems.

I left the doctor’s office and (against my better judgement!) googled cortisol levels. I stumbled upon cushings disease and lists of symptoms and it all just clicked. I started crying, half in fear but also half in relief. As scary as cushing sounds, I promise it can’t be worse than everything I have endured. The idea that we might be able to treat the root cause of all of my health problems sounded dreamy and amazing.

Then I got back the results of the 24 hour urine test, and it was on the high side, but still within the normal range. The doctor is completely unconcerned, but something in the back of my head can’t let this go so easily (especially reading here and on other sites about the inacuracy of that test in diagnosing cushings).

I am facing this alone, am not a good advocate for myself, and am overwhelmed already, so I let it go. But now I have a new symptom, and when googling it (again, bad idea) I came across cushings again. And now I just can’t let it go. A couple of months ago I started experiencing severe pain deep in my legs (it feels like it’s the bone) when I walk. At first, I ignored it and started to cut down my walking. Eventually it got so bad that a walk down the block brought me to tears from pain. I finally went to my GP, who sent me for an MRI of my lower back. It turns out that I have a herniated disc in my back, but the doctor explained that he doesn’t think that actually explains the matching pain in both legs, as it is only on my right side.

He checked my vitamin D level, and said it was so low it is undectable. He sent me to an orthopedist, but I am still waiting to see that doctor. I am at my wits end right now. I am not yet 24 years old, and my body is in shambles. I can’t walk a block without pain, and when I push myself to walk and stand on my feet the pain gets so bad that I have to spend a couple of days in bed recovering. My friends talk about doing all kinds of things like going on hikes or visiting the statue of liberty, and I make excuses because I know there’s no way I could physically do something like that.

Right now I am so torn. On the one hand, I have a family history of obesity and diabetes, and have been clinicly diagnosed with that. On the other hand, I read through the list of symptoms thinking “check, check, check…” I am quite large around the middle, but have super skinny wrists, ankles, fingers, etc. I don’t want to be diagnosed with cushings (or any other scary disease) but I can’t stop thinking that nobody’s luck is as bad as mine!

What do you think? Does it sound like I have cushings? If so, how should I proceed? Remeber, I am completely alone in this, I have limited resources and money, and I am timid and terrible at standing up for myself. I hope that someone here can help, because I have never felt so alone and desperate in my life.

Thank you in advance,

M

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Liz D, Adrenal Bio

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golden-oldie

 

Hi my name is Liz and I underwent a laparoscopic adrenalectomy 5/9/12 to remove my 3cm tumor that was releasing high doses of cortisol causing cushings syndrome for what I believe has been about 3-5 years now.

I was diagnosed with PCOS about 5 years ago so everytime I went to a Dr. complaining of my symptoms they blamed it on the PCOS and stress and sent me home.  I knew there was something else wrong, the symptoms didn’t add up, my face would get SO red it was embarassing, I would sweat through my clothes 2-3 times a day, my face became puffy, I would gain weight despite healthy eating and working out like crazy, I was anxious, depressed, I never slept, it didn’t add up.

Luckily I am a physician assistant and remembered learning about cushings briefly in school.  I read that most tumors were in the pituitary gland so a year ago I convinced my Dr to let me get an MRI of my brain to look for this ‘tumor’ that I was sure was there.  Well the MRI came back negative and I was ironically disappointed!  I was so sure I had cushings but maybe I was just crazy?  The symptoms continued to get worse and I just knew that I had cushings even though everyone told me I didnt because I was still petite and didnt ‘fit the picture’.

I had a colleague write a script for me to check my cortisol level and it was a whopping 56.  I immediately called my endocrinologist and got more testing done that week.  My ACTH level came back undetectable and I got an MRI of my adrenal gland done and suprise! There was my tumor.  I am getting married in August and I am so happy that I got this miserable tumor out now so I can restart my life as a normal person.  No one understands unless they have cushings the severity of the disease and how much it can change and effect your life.

I hope that people become more aware of the disease so it is no longer misdiagnosed and brushed off like mine was for so long.  I am so frustrated with my Doctors and with myself for being so ignorant, I feel like I wasted a good portion of the best years of my life suffering with this tumor and I hope people read this and realize there is hope!  Just 10 days out of surgery I feel like a whole new/better person.  I am on oral hydrocortisone now until my pituitary and other adrenal gland wake back up and start producing cortisol on their own but even with the steroids I feel great, a lot of my symptoms have started to resolve since I am at a lower dose of steroids and I can’t wait to start tapering down and be completely off of them hopefully by my wedding.

I am so happy that I was proactive and never gave up looking for my tumor and I cant wait to restart my life 🙂

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Bev, Undiagnosed Bio

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golden-oldie

 

Hello, my name is Bev I have 8 kids yes that is not a typo :)…

I have been fighting whatever is wrong with me for the last 16 yrs.  I have been diagnosed in the past as having a thyroid problem. That was always changing( hypo to hyper thyroidism) and now I am told my thyroid is fine. I was diagnosed with fibromyalgia and PCOS.

Now in  the last year I have gained about 100 lbs. …No matter what I eat or how much I exercise…. I recently went to the ER because of way more than usual water retention along with chest pain and shortness of breath.  They tested me for congestive heart failure, and that is not the problem.

After many blood test and etc. they have “unofficially” said I have Cushings. I go to see the Endoconologist in a week. I dont want to have this as I know noone else does! But it would be a relief to know what is actually wrong with me….. I am tired of this emotional and painful roller coaster my body has me on.

Confused and scared about what is going to happen.

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Kim, Undiagnosed Bio

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golden-oldie

Hello, everyone. Below is information from my introduction at Cushings-Help.

“So, about me…I’ve had various non-specific symptoms since I was a child and various specific diagnoses as an adult … hypothyroid, fibromyalgia, adult ADD (misdiagnosed and treated as bipolar from 2005-2008), chronic atrophic gastritis and chronic duodenitis (diagnosed via biopsy), colon polyps, non-celiac gluten sensitivity, sinus polyps, insomnia alternating with hypersomnia (sometimes I sleep up to 15 hours a day), plus an REM sleep disorder (REM sleep latency 287 min/378.5 total sleep time, REM sleep 37.5 min with 12 upper airway resistance episodes during that time) … and the list goes on. I have multiple vitamin deficiencies too (C, D, zinc and iron) and other abnormal blood levels (low arginine and dopamine, and high folic acid, glutamine, glycine, norepinephrine and ornithine). The levels that made some people suspect Cushing’s (vs. PCOS) were my DHEA and Testosterone. My highest DHEA was 1342, lowest Free T is 0.2.

From a CT scan of my abdomen in August 2011, I know there’s a “probably benign” lesion on my liver, a cyst on my kidney (plus medullary sponge kidney), a 10 mm cyst on my ovary and an umbilical hernia. My PCP considers all of this normal. Also, I’ve had four fractures as an adult (two in 2008 alone, one that required surgery) partly because of poor balance and coordination (frequent trips and falls, dropping things, etc.). I was through an EEG and 24-hour EKG because I fainted and collapsed on the sidewalk outside of my kids’ school at the end of December 2011. Those tests were normal.

…In terms of my physical appearance, I don’t have stretch marks but the shape of my face changes almost daily. It’s been hard for me to piece together a visual timeline since I hate having my picture taken and therefore, steer clear of camera lenses. (NOTE: I did manage to put a timeline together…You can find it here. http://cushings.invisionzone.com/index.php?app=gallery&album=408) How sad is it that I have very few pics with my kids because the person I see in the mirror is a stranger! I don’t even resemble the person I once was…my weight just continues to creep up regardless of how little I eat or how much I exercise. The fatigue has gotten REALLY bad lately and my tolerance for any physical activity is gone. I have regular shortness of breath and my blood pressure and heart rates are all over the place. Just the thought of doing stairs to throw in a load of laundry is overwhelming. And after showering to get ready to go somewhere, the only place I’m ready to go is back to bed. I also have a small buffalo hump and my neck is very thick. 16″ necklaces that used to fit comfortably won’t even close now.”

January 30, 2012

Today I had an initial appt with an endo who ordered the following tests:

Gave blood today to measure:

UR/CS/CBC/FT4/T3RIA/TSH (have confirmed hypothyroid; TSH has been remaining high even on 125 mcg Synthroid)

GONAD #1

Thyroid Antibodies

Vitamin B12/Folate

IGF-1 (have two kids with GHD being treated, third child is being tested; endo suspects IGF-1 may come back low)

IGF-BP3

ACTH

Cortisol

Cardio CRP

DHEA (history of high DHEA … 554, 717, 1342)

Ferritin

Prolactin

Free Testosterone (history of low Free T)

Vitamin D, 25 (have confirmed Vitamin D deficiency, rechecking levels)

Vitamin B1

Vitamin B6

Vitamin C

Tuesday, January 31 having DEXA scan of spine, hips, and right wrist and ankle (have had multiple fractures on right side…cuboid (foot), anterior process (heel), elbow, wrist).

Thursday, February 3 having nerve conduction study because of peripheral neuropathy in hands and feet

Friday, February 4 meeting with opthamalogist for vision testing (peripheral vision is diminished, causing dizziness, balance issues, resulting in falls)

I’m waiting for endo’s order to have an MRI of the pituitary. Endo reviewing report from the CT scan I had in December 2011 after my fainting episode/collapes on the sidewalk outside my kids’ school. The report says nothing except there were not hemmorages, so anticipate order for MRI will be coming soon.

This seems like a lot of tests, but I think the endo wants to determine where to dig deeper. The nurse practitioner asked a lot of questions that led me to believe she may have been suspecting Cushing’s and/or growth hormone deficiency. And they were interested in a timeline I’d put together demonstrating my eight month experience on Ketoconazole, which allowed me to shed weight and caused an improvement of symptoms. (The weight went back up and symptoms flared off Keto as posted above.)

I guess I’m in a waiting pattern now as the endo pulls together the results of all these tests and decides which tests will be next. The only next test that was discussed was GH stim testing, again leading me to believe the endo may think he’ll uncover that issue, especially since I have two kids who are GHD. (My son also has smallish pituitary and chiari malformation and my daughter has a Rathke’s cleft cyst.) I know a lot of the standard Cushing’s tests are missing from the above list, but this is a starting point. I’ve never had such a full endocrine workup, so at least I’ll have a baseline.

I’ll post more about my journey as my test results start coming in.

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Rashelle, Pituitary Bio

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From 10/11/2010:

My name is Rashelle and here is my success story.

I grew up as a tall, skinny, athletic and active girl. I was one of those girls you envied who could eat what I wanted, when I wanted without having to worry about gaining weight. In fact most my high school life I maintained a steady weight of 118 pounds.

That all changed in the blink of eye during my senior year of high school. At 18 yrs old my once long and skinny face, turned round and moon-like. My stomach, once flat as a board, now looked like the belly of a pregnant woman. I once stood tall but found it difficult to keep my shoulders back with the “buffalo hump” now protruding behind my neck. My nice long legs now were now covered in stretch marks and I started getting unwanted hair in places where hair should not grow on a girl. I stopped getting my period, felt tired all the time and started to get really bad migraines. I suffered insomnia and depression.

I knew there was something wrong but didn’t know what. The worse part was the embarrassment of gaining so much weight, over 50 pounds in a matter of 4 months.  I would run into old classmate and I could tell by the look on their faces what they were thinking. Some would do double takes, not even recognizing me at first glance. Once I ran in to my high school crush, whom I hadn’t seen in years, and he was so confused by my appearance and swollen face that he asked if I had just gotten my wisdom teeth out? I wanted to crawl under a rock and hide.

After being testd for all sorts of thing,  my family doctor (whom I’m sure thought I was a hypochondriac by now) referred me to an Endocrinologist in 1999. Finally I would be getting some answers!

Much to my disappointment the specialist found nothing wrong with me except claiming that I had a bad case of Polycystic Ovary Syndrome (PCOS). Regretfully this was a wrong diagnosis that caused me to live with Cushing’s disease 4 years longer than I could have. I was prescribed some medication to help with my facial hair on my chin and upper lip. But that was the least of my worries, the hair was hardly noticeable, it was my weight that I was concerned about. From then on I  became an exercising dieting queen. I was going to Curves and working out at the YMCA and I tried every diet imaginable from Weight Watchers to Jenny Craig, Atkins to Body for Life. But no matter what I did nothing seemed to work. I was so frustrated! My last resort was to lay out the money to see Dr Lefebvre, a weight maintenance control specialist. After a few months of treatment, being told to eat 500 calories a day, and losing a minimal amount of weight, I was questioned about how much was I really eating as to inadvertedly accuse me of being a closet eater.

In the year 2000 I went backpacking through Europe for 2 months. Despite the headaches, fatigue and extra weight I had to carry around I was determined to have a good time. The trip was challenging, after 2 months of walking everywhere with a heavy backpack on my back I still had not lost any weight. During this time I was also earning a Degree in Journalism and working lots of hours. Trying to balance school, work and a social life was a difficult because I was exhausted all the time and had zero energy.

Fast Forward to November 2002, age 23; my mom had been with me through this whole rollercoaster ride and was just as frustrated as I was. One night she was searching the internet for what could possibly be wrong with me when she came across this website on Crushing’s Disease. She called me over and we were amazed to find that I had almost every single symptom listed! So the next day I asked my doctor for if I could get a second opinion from a different Endocrinologist.

This time my new specialist said it was unlikely I had Cushing’s yet sent my to get a 24 hr urine test, something the previous Endo had neglected to do. She said it was the “golden test” that would confirm if I did indeed have it. I remember when the test results came in and I got the news. My cortisol level was unequivocally elevated at 1061.3 nmol/day indicating that I most certainly had Cushing’s disease. I was so scared, yet even more so I was relieved that I had finally been diagnosed. The next step was an MRI to determine whether or not I had a tumor on my pituitary gland or on my adrenal gland. As it turned out the tumor lesion was on my pituitary and measured 0.9 x 0.9 x 1.6 cm in height. It was explained to me that pituitary tumors have a 65% cure rate, but there is a lack of cure with pituitary surgery when the tumor is over 1 cm. So my cure rate goes was only 35%. Even so I was anxious to proceed with the surgery despite these statistics.

On Feb 7, 2003 I had the surgery and was discharged from the hospital 5 days later. The road to recovery was a long one but I had high hopes when I notice that my headaches had disappeared and I got my period again for the first time in 4 years. However, I still appeared quite “cushingoid.” Doctors believed that I had been cured but could not tell for sure as it was hard to distinguish scar tissue from the tumor on the MRI. They warned me that results (losing the weight) could take a while so I went on with my life waiting and watching patiently for any changes.

Later that year on October 2003 I was rushed to that hospital for what appeared to be a really horrific migraine. But it was a lot different then any other headache I had ever had. The pain was so intense and almost intolerable I wanted someone to take a gun a shoot me! I spent 36 hours in Emergency being treated for what the emergency doctors diagnosed as “just a bad migraine.” Finally obtaining a CAT scan showed that it wasn’t a migraine after all, my tumor was still there and had hemorrhaged and bled into my optic nerve. I had right sixth nerve palsy with decreased visual acuity in my right eye. I spent 3 weeks in the hospital and could not see properly out of my one eye for over 5 months. Luckily my vision eventually came back 100%. My specialist and surgeon decided that the hemorrhaging had been a blessing in disguise as it could mean that the tumor could be all gone after the episode but it would be too soon to tell.

Then, March 2004 I awoke in the back of the ambulance to be told that I had had a grand mal seizure. Doctors found this to be a mystery since I had no history of seizures or epilepsy. Tests concluded that the crushing’s was still present and I had another MRI which showed residual tumor still extending into the cavernous sinus which is not approachable surgically. The tumor was now only a dangerous 4 mm from my optic nerve.  So the next option was to be referred to a Radiation Oncologist to discuss the option of radiation.

On Oct 20, 2004 I had stereotactic radio surgery. The following week I felt great until the effects of the radiationg suddenly hit me. The radiation took a toll on me and I could not even find the energy to get myself out of bed. It was by far the sickest I have ever been in my whole entire life. Eventually, after being bed ridden for several months I regained my strength and things got back to normal. I still had not lost any weight and showed most of the signs of crushing’s. It is believed that by doing the radiation, it impacted my pituitary function causing it to lose partial functioning. As a result my adrenal glands started to over react to compensate which was not helping my Crushing’s at all.

So, the next step was for surgeons to perform a bilateral adrenalectomy. In June 2006 what was suppose to be a simple, not so risky surgery turned out the opposite. The procedure should have only consisted of 4 very small incisions done laparoscopy. However, during my surgery they discovered that my liver was too large and had to do a complete incision across my whole stomach in order to proceed. Post surgery my blood pressure was so high I was monitored and not let out of the post opt room for 14 hours. On a side note while going through my medical records I discovered that after they had stitched me up a I had to have an X-ray while still under the anesthetia . Apparently the operation room was missing a pair of scissors and they were thought to have been left inside me! Luckily they were found elsewhere.  My recovery was a long and painful but I kept hoping and praying that this would be the cure, especially after my long history of unsuccessful attempts. First the pituitary surgery, the tumor hemorrhaging, the grand mal seizure, radiation, and then the bilateral adrenalectomy. I couldn’t imagine what I was going to do if this did not work as I knew I was running out of options. My fear of never finding a cure led me to seek further answers.

In January 2007 at the age of 26 and a few months post op my parents took me to the Mayo Clinic in Arizona. With all my medical records in hand we met with top of the line doctors and discussed my condition and prior attempts to get cure my crushing’s. The doctors said it was unfortunate and just plain bad luck that I had encountered so many problems on my quest for the cure. As far as the specialist was concerned everything that could be done, had been done. Six months after I got my adrenal glands out I finally noticed that I had started losing weight. At this point I had given up on exercise and eating healthy so found it to be a small miracle. Day by day and month by month the pounds started melting away. I was losing weight as fast as I had put it on and the best part was I wasn’t even putting in any effort to do so. Before I knew it I was down to a healthy 130 pounds and back to myself.

At the age of 27, I had been cured of Crushing’s! I  to had overcome this horrible disease that It had overtaken my life and I\could  begin working on getting my life back. By this point I found it difficult to find a job in the journalism field due to the fact that I had a huge gap in my resume. Having graduated so long ago and not having had any experience made it impossible to even get an interview. Looking back at all I had been through I expected to be happy I had been cured but instead I strangely became depressed.

Once an dedicated Christion, I was now mad at God for making me miss out on so much. I felt like by now I should have been married, had kids, owned a home, been established in my career etc. But I wasn’t. I had lost out on so much precious time. I started to hate the job I once loved, sleep a lot, and do things that were out of character for me. I got involved in a relationship with a married man whom I had met on a plane and that didn’t even live in my city. It had been so long that any one of the opposite sex had even paid attention to me that I thrived on the attention. I latched on and became obsessed and needy (totally not me). I just could not find happiness and had delusions of what my life could be like with this secret love affair. On a whim I decided I was going to move to the same city  as him. So  I packed up all my belongings, ordered a moving truck, gave notice to the place I was renting, got a transfer at my job, and found a new place to live.

Three days before I was suppose to leave I overdosed on some pills. I dont remember the incident, not even taking the pills, just the part of having to drink that disquisting tar stuff. I was admitted to the Psych ward and held against my will. I spent 3 weeks as an inpatient and attended therapy sessions daily. I was diagnosed with bi-polar disorder and it was explained to me by my psychiatrist that I had been grieving from a sense of loss. Only the loss was not a person, it was a loss of time. While battling cushings I was always concentrating on getting better that I didnt even have time to focus on my life goals. But now that I was better I had time to realize all the I missed out on. After being released as an inpatient I became a mandatory outpatient. For one month I had to attend daily classes at the hospital. The sessions focused on being in the present and included things like art classes, sailing, yoga and medititation as well as daily therapy sessions. I learned all sort of coping mechanisms so now when I am depressed  instead of sleeping to escape the pain, I draw color, write  or make a collage. In the end what could have ended in tragedy, opened my eyes and helped me a great deal. I still battle with depression and at times fall into a deep black hole but I always manage to pull myself out of it.

I honestly believe that since losing my adrenal glands I have become a different person. My emotions are intensified, I get stressed and sick easily and am quick to anger. It has definitely taken some time to get use to. Istill have to see the doctor regularly to monitor my meds and will be on medication for the rest of my life. I have hypoglycemia and Addison’s disease which so far only affects my skin pigmentation and gives me a year round tan. All of that is nothing compared to what I was dealing with when I had cushing’s. Having the disease strangely somehow has made me a better person. I am not quick to judge a book by its cover and really truly care for people. In fact, after all the time i spent in the hospital I am now back in school to become a nurse.

So remember that what ever you are facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believing.

Update 11/4/2013

In fact, after having completed my Degree in journalism I am now going back to school to become a nurse. After my experience I want nothing more than to help people who are sick. Just remember that what ever you’re facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believe you will be cured.

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Andrea L, Pituitary Bio

1 Comment

A Golden Oldie

I first noticed something abnormal about my health in the summer of 2009, at age 23. I suddenly developed severe acne when I had had clear skin since I was a teenager, and I noticed more hair on my face and body than I was used to. In retrospect I realize that I’d also had bouts of weight gain, a buffalo hump and excessive sweating during my adolescent years, but I didn’t think anything of it at the time.

Around the same time I noticed the acne and hair growth, I also started putting on weight. I’d been on the thicker side for my height since childhood, so I decided to join Weight Watchers. Even though I was hungry a lot of the time, I stuck to the plan religiously and lost about a half pound per week. It was slow, but I was moving in the right direction so I stuck with it. I had bouts of fatigue throughout the process, but I would just assume that I needed to tinker with my diet – more protein, less protein, more fruit, less fruit, whatever. I tried a lot of different things, always focusing on getting adequate nutrition, but never had the energy that my Weight Watchers buddies seemed to have.

About six months later I finally went to my mom’s endocrinologist when I was visiting my parents in Texas. I was concerned that the acne and hair growth meant I had PCOS. All those tests came back normal, so the doctor gave me a 24 hour UFC just in case. It came back elevated, and she said I ought to follow up with an endocrinologist in New York where I live.

My next menstrual period didn’t come until 4 months later, and then they stopped completely.

My new endocrinologist in New York ordered more tests (you all know the drill). Over the next six months or so the 24 hour UFCs kept coming back high, salivary cortisols were normal or high, and one dexamethasone suppression test was kind of ambiguous. The doctor said that my urine volume was really high and might be screwing up the results, so I retested after limiting my fluid intake. That UFC came back normal, so I was instructed to follow up in six months.

As if on cue, the months following my normal UFC were great. For some reason I finally felt like I was bursting with energy. Beyond that, I had lost weight and even landed my dream job. At the time I assumed that the energy was from finally finding the right balance in my diet. The acne and hair growth were still there, but as far as I was concerned it was nothing that couldn’t be solved with some tweezers and makeup. Later I noticed in photos that even though I had lost weight, my face was much rounder than it had been before.

The nightmare began in January of 2011. I started feeling more anxious than usual. I began to cut more and more things out of my schedule because I didn’t feel like I had the mental energy to handle my normal workload. I had to take a Benadryl most nights to sleep. I started suffering from regular constipation for the first time in my life. My appetite increased markedly; I kept feeling less and less satisfied with my normal diet. I gave in and started rapidly gaining weight again.

After a particularly stressful week in February, I asked my mother to stay with me in New York for a little while, admitting that I had been feeling out of sorts. I figured I’d take a week off from work and just do fun stuff and I would be right back to normal.

…Wrong.

The bouts of fatigue returned, this time so crushing that I didn’t even have the energy to make my own meals. I’ll never forget the day I attempted to go out for my morning jog, trying to convince myself that it was all “in my head,” and despite having plenty of cardiovascular and muscular strength, I could barely take a single step. I felt like the world had gotten bigger somehow, like I drank the shrinking potion from Alice in Wonderland.

At the same time, my appetite became so ravenous that I felt like I could gnaw my arm off 24/7. I also started feeling scatterbrained and having difficulty focusing. These were the beginnings of the cognitive symptoms that would prove to be the most debilitating of all.

My mother, god bless her eternally, suggested that the odd change in my mental state might have something to do with all those abnormal hormone levels from the prior year’s tests. I followed up with the endocrinologist again and had a very high 24 hour UFC. He ordered an MRI. My symptoms were getting worse, but my mom fatefully broke her foot and had to return to her home in Texas.

By the time March arrived I was so scatterbrained that I constantly felt drunk. Going to work was petrifying. My appetite was still insatiable.

Finally, the mood swings came. By “mood swings,” I don’t mean irritability. I mean that I became an ultra-ultra-rapidly cycling manic depressive. I would wake up at 3:30 in the morning giddy with energy, writing long, rambling e-mails to everyone I know, trying to go for a jog only to have to stop and dance to the music on my MP3 player in the middle of the Bronx. Then I would feel horrendously depressed mere hours later.

I could spend a lifetime attempting to describe the pain of bipolar depression. It is beyond despair. Take the icky feeling you might get with a cold or a flu and multiply it by a thousand. I was so distressed I felt like my brain was on fire. Like I had been poisoned. It would get so bad that I couldn’t speak. I vomited just from the discomfort. Once I went to the ER, desperate for relief. All my vitals were normal. They just let me ride it out, like I was having a bad drug trip. Later, I described these feelings to my roommate, who said she felt that exact feeling while going through narcotics withdrawal.

One of the most interesting aspects of this experience was that every time I got a migraine headache (which I’ve had periodically for most of my life), my depression would lift or I would get more manic. Note that if I had a choice, I would take a migraine every day of my life over the pain of severe depression.

I went to a psychiatrist, and much to my dismay, he told me I was not crazy. He gave me totally ineffective herbal mood-lifters and told me to go back to the endocrinologist. I started taking huge doses of caffeine in an attempt to take the edge off the low moods. It worked temporarily, but the feeling always returned. I ended up back in the ER after experiencing a lovely phenomenon called “sleep paralysis” (Google it) for two hours straight, which understandably gave me a panic attack. I was put on benzodiazepines, which prevented another panic attack but did nothing to make me more comfortable.

Some interminable time later, my endocrinologist called to inform me that I had a 5mm adenoma on my pituitary gland. I wept with relief and my family made immediate arrangements to take me to MD Anderson for surgery.

Maybe if I had read some of the bios on this site I would have anticipated what was to come. Cushing’s patients never have it that easy. In my scatter-brained, benzo-doped, manic-depressive stupor, I showed up at MD Anderson for…more tests. There, both a 24 hour UFC and dex/CRH test came back normal. A few things about the dex/CRH test were not administered as planned, but the in-house testing results combined with my still-normal bodyweight convinced MD Anderson that I did not have Cushing’s, and was simply a total nut case. They sent me on my way.

Finally I returned to my mom’s endocrinologist, the same woman who had had the foresight to give me my first 24 hour UFC. She ordered another round of tests and sent me to a wonderful psychiatrist who promised to do her best to make me feel better while we waited for a diagnosis. A litany of psychiatric medicines (mood stabilizers, sleeping pills, stimulants, antidepressants) would each work for a few days or a week and then wear off. Eventually the mood swings turned into a persistent, mind-numbing depression.

In retrospect, the benefit of having my mood fluctuate so violently earlier in my illness was that the depression didn’t have time to take hold of my thoughts. It was painful, yes, but I was able to fight the feelings of hopelessness and self-hatred with logic and positive self-talk. Later on I was not only completely miserable, but also came to believe that my misery would never end. I’m amazed I lived to tell the tale.

By midsummer I had a few more elevated 24 hour UFCs under my belt and had gained enough weight to look more “cushingoid.” This time I went to Methodist Hospital in Houston. The surgeon there agreed with my endocrinologists that I had pituitary Cushing’s, but disagreed that my MRI showed a defined adenoma. Again, Cushing’s patients never have it that easy. Luckily this surgeon was caring and proactive enough to order an IPSS and schedule me for surgery, though he warned me that it may not cure my depression. I asked for the surgeon to remove my entire pituitary gland in the event that he didn’t find a tumor.

August 23rd, 2011 was the day of my rebirth. I can attribute my euphoria in the week after the surgery to the strong pain meds I was on for the CSF drain, but by the time they were out of my system I was astounded to find that my mood and thinking were absolutely 100% normal. I can once again think, laugh, smile, sleep, taste, and enjoy the company of others. Within three weeks I had enough mental energy to resume working from home.

No tumor was found, so my entire gland was removed. No amount of hormone replacement in my future can dampen the joy of having my self back, permanently, with no fear of relapse. I’m not even fully recovered from surgery and I’m feeling better than I have in quite a long time. Even the constipation and acne are gone!

It’s disorienting and traumatic to have essentially lived with a temporary form of bipolar disorder, only to be cured of it as suddenly as it began. I fancied myself knowledgeable about mental illness before this, but I know now that you just do not fully understand it until you feel it first-hand. Luckily it all feels like a distant memory now. There must be a natural sort of psychological distancing that occurs with a traumatic experience like that.

As I posted on the forums shortly after my surgery, for those of you who may have given up hope, keep fighting! Take it from me that there are better times ahead.

Note: Email Andrea or add comments to this bio below.

Andrea was interviewed on the BlogTalkRadio Cushing’s Program on Wednesday, October 19, 2011

Listen live at http://www.blogtalkradio.com/cushingshelp/2011/10/19/andrea-l-pituitary-success-story

This interview is archived at http://www.blogtalkradio.com/CushingsHelp and iTunes podcasts at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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Angela Marie (Angela M), Undiagnosed Bio

6 Comments

Growing up I’d always been anywhere from underweight to average with a couple chubby phases in my pre-teens and teens. I actually got into modeling work for nearly 10 years and I found myself having to take time off in 2008..At least I thought it would just be little while. Between anxiety, being fairly active and a high metabolism, I never had trouble losing weight until In 2007 out of nowhere, I found myself rapidly gaining a lot of weight. All together I had gained about 60-70 lbs in well under a year without my diet or lifestyle ever changing and I’d always been a light, picky eater. I went from a usual size 5-7 to 15 or S/M to XL/XXL. I got back into yoga, pilates and even bought a Total Gym. Working out and dieting even I wasn’t losing even so much as water wieght. I was notiing a whole host of new symptoms. From purple stretch marks, gaining weight, my fingers, toes and palms of hands constantly bright red. Weight gain/appearing swollen only in my torso and upper body, to even my features changing. Adema, constantly craving and eating ice. My once heart shaped face was now completely round and full starting from the top of my ears. I appeared more swollen than anything.

My first endo diagnosed me with hypothyroidism. He was the first to suggest Cushings and my first 24 UFC was 4 times higher than normal and the next was slightly above normal. The rest after that were in the normal ranges. Eventually hypothyroidism was ruled out after routine tests came back normal without taking the Synthroid and telling my doctor I was. Once I admitted it, he was so angry I proved him wrong that he dismissed me as a patient.

I was sent to another Endo and a specialist he referred me to. The next endocrinologist ended up being the most arrogant, rude person I’ve ever met and the few appointments I had with him ended up being mostly arguments or me breaking down into full blown panic attacks. The specialist I seen and his fellow who are supposed to be the best in my state initially believed I have Cushings once they went over my symptoms, medical history and photos documenting my physical changes. The specialist and my past endocrinologists even had grand round meetings on my case and still blew me off!

In 2008 I started having fluid/discharge from my right breast and after tons of testing to rule out breast cancer I was sent to surgery to remove the ducts. After this traumatic surgery, I still have fluid and from both breasts now that’s been ongoing for 6 years. Even after expalaining my situation and medical issues, I’m just told to lose weight. I went from completely normal sugar levels to borderline diabetic to “full blown” diabetic within a matter of months at the age of 26. I’ve seen numerous dieticians, nutrition and diabetic classes and no one can figure out why I’m not losing weight doing everything right. I was prescribed Metformin and lost a little over 20 lbs, but it was such a high dose it had to be lowered and I stopped losing any more weight.

Since everything started in 2007 it seems I’m adding more and more symptoms almost monthly to my already too long list with no answers as to why or what is causing them. I’ve done more research than some would consider humanly possible and probably more than some doctors I’ve seen! Reading blogs, forums, bio’s, etc. I can’t believe how many of the same symptoms I have as other patients. Mystery Diagnosis anymore is hard to watch relating so much to the stories I break down crying. The only symptoms I seem to be lacking is the constantly high cortisol, pronounced buffalo hump and thinning skin. Other than that I seem to have every single one, even the rarest or some I’ve never even seen associated. I’ve been offered so many possible diagnosis’, but nothing definitive. Everything from metabolic syndrome and PCOS to auto immune, parathyroid and that’s just your body!

I’ve seen or been pushed off on just about every specialist there is. At least my primary doctor admits there is something serious going on, but it’s over his head. Every single one of my other doctors, PA’s, surgeons or specialists believe I have Cushings, but I need an Endocrinologist to agree.

6 years later I still with labs all over the place, a list of literally 30+ symptoms and health problems because of this mystery disease that’s yet to be diagnosed. My Cortisol tests seem to be back and forth, but mostly showing low. My testosterone, ACTH and Insulin Like Growth Factor are all elevated. My vitamin D and iron are extremely low even with prescription strength vitamins. My white cell count is high enough to be sent to a cancer center to rule out different types of cancer. I was dagnosed with fattly liver disease and no answers as to why. Hair growth on my face and body, acne breakouts worse than I ever had in my teens. Chronic reoccuring skin, bacterial and viral infections.Dark pigmentation under my arms. Excessive sweating to the point my hair is soaked or sweat drips from my face in cool weather or shopping. Severe intolerance to heat. Growths or polyps on different organs without any further testing and more abnormal labs and symptoms than I can keep track of. I’m just at that point where I’m not sure if I give up and let it take me out or just keep searching for that one possible doctor who will listen and order the right tests.

All I know is I’ve lost so much of my life being so sick and disabled. Not working, not even modeling work on the side, no college to work with animals and be a veterinary tech, turning 30 and still not being able to get pregnant, going out and having fun like I should or even recognizing myself in the mirror. Loving swimming and summer, but can’t stand looking at myself or being engaged for over 5 years and pushing off a wedding because I don’t want to walk down the isle like this and look at my wedding photos remembering this time in my life.

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Shelleyw, Adrenal Bio

1 Comment

Hi all! I am joining this group because my 19 year old daughter is going through testing for cushing’s.

She has PCOS although she is very thin. Her cortisol levels have come back high on more than several occassions, so our GYN sent us to the endocrinologist.

They have done 2 24 hour urine, Dexa suppression, cortisol serum, ACTH, CBG, DHEA, 2) Salivary tests. This has been ongoing since May. The Endo said that she has failed all of the tests, and she just did a third 24 hour urine and CBG again.

They are really puzzled, as she really doesn’t fit the normal symptoms list(neither did she fit PCOS). They have said that it seems to be adrenal as the ACTH was low and the DST was high. So we are patiently awaiting the results.

She is my only child. I am so afraid. We also have Ehlers-Danlos syndrome.

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