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Toni (Toni), Adrenal Bio

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adrenal-location

 

Diagnosed with cushings syndrome, right adenoma. Reviewed right adrenalectomy after 3 years of being bounced from doctor to doctor. Diagnosed with high blood pressure, high cholesterol. Hair loss, intense itching, bruising, weight gain, depression and osteoporosis, eith multiple fractures, torn ligaments and tendons.

Finally after researching a medication that one endocrinologist put me on for the osteoporosis I found another endocrinologist in NY at colombia presbyterian hospital that specializes in premenapausal idiopathic osteoporosis and this medication. I got an appointment with her.

On one review of my history she sent me for 24 hr urine cortisol which came back through the roof.

She then refereed me to their adrenal specialist had a CT scan which revealed a 3.5cm maas on right adrenal gland. Had surgery the next week and am now 4 weeks post op.

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Robert, Pituitary Bio (Golden Oldie)

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golden-oldie

 

My Comments: (will add more later, written by wife)

Pituitary surgery 12/15/05 but not able to get it all.
33 treatments of radiation in April/May 2006
April 2007 still have Cortisol level of 166, back on Ketaconozole
remaining tumor measures 2.6 cm x 1.8 x 1.4

age 51

Cushing’s has lead to:
diastolic heart failure
osteoporosis
gaining 60+ pounds
restless legs
muscle weakness
fatigue
dry heaves (anyone else have this??)
anxiety, depression, restlessness

currently monitoring Cortisol levels, to have another MRI in August
keeping adrenalectomy as last resort

would appreciate tips/suggestions….

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My life wasn’t always so charmed-Sam DeBianchi

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Bravo’s Million Dollar Listing Miami‘s high-powered Realtor Sam DeBianchi may be known for selling some of the most spectacular properties in South Florida, but in the new issue of Life & Style, the reality star reveals that her life wasn’t always so charmed.“I almost died at an early age,” Sam exclusively says to Life & Style about suffering from Cushing’s disease as a child.

The disease, which occurred when a pituitary tumor bloated her body, had cursed her with thick facial hair. “It gave me osteoporosis and diabetes — and it was going to kill me,” Sam tells Life & Style.

Cushing’s disease also caused Sam emotional pain from bullying she experienced in middle school. “They would circle me every day and go on and on about how ugly I was,” Sam recalls. “I’d cry to my mom and dad, begging them to home school me.”

But at 14, a visit to the gynecologist changed everything. “He rubs my face and says, ‘You have a lot of hair,’” Sam remembers. “And I’m thinking, ‘Thanks, jerk!’” But the doctor was genuinely alarmed by the growth and sent Sam to an endocrinologist. Ultimately, she was diagnosed with Cushing’s.

Sam went to an expert at the National Institutes of Health in Bethesda, Maryland, where she became a case study and underwent two delicate surgeries at 15. “The doctor said the tumor was near the optic nerve and if something went wrong, I could go blind,” Sam solemnly reveals.

Thankfully, the operations were a spectacular success. “I feel so lucky to be here today, living the life I love,” Sam says. “Now some of the people who were nasty to me back in school suddenly want to hang out,” she tells Life & Style. “I’m friendly to them — but I don’t forget.”

From My life wasn’t always so charmed-Sam DeBianchi |SpyGhana.com.

Laree (Laree), Pituitary Bio

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My Thanksgiving Day was less stressful this year than I thought it might be, because I had my head examined the day before at Johns Hopkins at about 9:30 in the morning.  By 1:30 in the afternoon, my endocrinologist there, a metabolic bone specialist, had emailed me that I was the proud parent of a 0.7mm lesion on the right side of my pituitary gland.  All day Tuesday I had performance anxiety because I feared that after six months of testing every liquid my body could produce for excessive cortisol, I had finally been given the green light to undergo the Holy Grail of tests and have a look-see at the Master Gland.  I feared that I wouldn’t be able to come up with the goods, but I managed to produce, and now I’m being referred to a neurosurgeon.

It’s been a very long process, even though the testing has only been a six month part of it.  In 2001, I broke  my collar bone while playing tennis.  Granted, I fell down, but it’s not like I made a Boris Becker leap for the ball or anything.  Then in 2003, my first stress fracture, followed by another one in 2005.  Then a crushed wrist on another tennis court mishap–my feet got tangled up when I was moving backward, and within a week, I was having my wrist rebuilt with a titanium plate and several screws.  Then there was  the broken tailbone, followed by the upper arm compression fracture suffered while pushing a small car off an ice shelf in Ohio.  And finally the L4 vertebra that I broke loosening the lug nuts on a tire I was changing with my still-healing broken arm.

After each incident, I would ask the doctors what could be causing all these weird bone breaks, and sometimes they would send me off for a dexascan to see if I might have osteoporosis, but the test always said no, and the doctors were always orthopedists of one sort or another.  They would shrug and say that these things happen.  After the upper arm (this past January), and the subsequent dexascan, the ortho told me that the test said I didn’t have osteoporosis, that if I wanted to try to learn more about the bone formation, I should see an endocrinologist, but he didn’t know of one to whom he could refer me.  He did refer me to his colleague to have my osteoarthritic hip replaced.  I’m 53, by the way.  He told me that going to an endocrinologist was likely to yield nothing, and he opined that I was suffering from “Laree Martin syndrome,” if I need for it to have a name.

My gynocologist, who works in the same hospital center as Ortho 1, we now lovingly refer to him as Frick, referred me to an endocrinologist who also practices in the same hospital center.   I got myself hooked up with her, and she very quickly determined that since I had broken not one, but all of the bones that are considered to be typical indicators of osteoporosis, despite multiple dexascans to the contrary, I had osteoporosis.  Shortly thereafter, she discovered excess, but “unimpressive,” levels of cortisol in my system.

Ortho 2, we’ll call him Frack, saw me prior to my hip replacement, and I complained about my back injury the week prior.  He pronounced that I had not broken my vertebra, but he offered to send me for an MRI, if that would make me feel better.  I scheduled the MRI, had it in the evening, called his office in the morning to report that I had gone for the test, as he had asked me to do, and instead of leaving a message, I got put directly through to the doctor.  Turns out that he was wrong, and it is possible to break your L4 vertebra pulling on a lug wrench with a still-healing compressions fracture in your upper arm . . .  if you have osteoporosis.  When I told him that he didn’t have to worry about my bones in general, because I was seeing an endocrinologist for that.  I just needed him to be extra careful not to break anything when implanting the new hip.  I told him that the endo specialist was working me up for Cushing’s, and he told me that I certainly did not have Cushing’s, because I wasn’t 100 pounds overweight and diabetic.

By September, the endo doc concluded that my results were equivocal for Cushing’s, but she encouraged me to go to Johns Hopkins to the metabolic bone specialist, since there wasn’t another good explanation for my osteoporosis, which had by that time been objectively diagnosed with a bone biopsy.  She felt that she had no choice, clinically, but to treat my osteoporosis as post-menopausal in origin, even though my bone breaks began 8 years ahead of my menopausal symptoms.  Off to Johns Hopkins.

The bone specialist took the history, again . . . did some more testing (blood, saliva, urine, again . . . ) and then consulted with the adrenal team, who agreed with her diagnosis of ACTH-dependent Cushing’s disease.  Unfortunately for all of you who read these bios, it’s more complicated than just Cushing’s, because I had bilateral pulmonary emboili and a DVT in my leg when one of my stress fractures had me on non-weightbearing restrictions for six weeks.  That little incident was also considered a fluke, until about six years later when I was diagnosed with an autoimmune condition that is also considered to be “rare.”  It is a mouthful to say–antiphospholipid antibody syndrome (APS).  It’s main risk is hypercoagulability, and its treatment involves lifelong warfarin (brand name Coumadin), which people mostly call a “blood thinner,” although it doesn’t really act that way.

I feel somehow more than lucky to have two fairly uncommon, fairly complicated conditions with fairly scarey treatment options.  I feel like I need a Fairy Goddoctor to be able to properly manage my surgery and treatment, because of the risks associated with drug interactions with the warfarin, the higher risk of clotting that I already have from the APS, which is apparently compounded by Cushing’s, and my understanding that I’m not supposed to be mixing hormones, including steroids, with the warfarin.  Nevertheless, it was good to know so quickly after the MRI that the result was that I flunked that test as well as I had flunked all the others previously.  I thought I was going to have to stress over that for the entire long weekend, but no.  Instead, I pretty much put it out of my mind until tonight, and now you’re getting the Reader’s Digest version of the last 12 years of my medical experience.

The doctors have exhausted my resilience with all of their certainty, which over the years I relied upon to conclude that I was just clumsy and that my weight struggles with those extra 25 pounds that could pack on in a couple of months, especially when I was recuperating from a fracture, without really changing my diet much, were probably associated with my inconsistent sleep and the fact that I will reach for pizza when I am feeling particularly low.  So when I read here and there about the recovery process after surgery and how difficullt and complicated it can be, I have to admit that my first reaction was that I should quit work, take a year off, spend all my money on travel or whatever I would feel like doing, and then just commit suicide and be done with the whole thing.  And that still has a sense of comfort associated with it when I remind myself of what I’m in for for the next maybe couple of years or more in recovery . . . and possible relapse . . .

But I have a 82 year old mother, and I”m her baby, and I witnessed her sorrow when my brother was killed in a motorcycle accident about 18 months ago, and I wouldn’t put her through that again.  Instead, it’s my intention to take as much time off work as possible after surgery to let myself gather my emotional resources and get over the angry, bruised feeling that I have from both diagnostic processes that have lasted over a decade.  I appreciate that this space is here for newbies like myself to say out loud what most of my friends and family either can’t or don’t want to hear.  It doesn’t really matter so much that anyone is listening; I just need to say it.

Cheers!

Laree (who actually has Cushing’s disease, not Laree Martin’s syndrome)

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Andrea P, Steroid-Induced Cushing’s

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What can you do when the cure might be worse than the disease?

“Have you thought of losing some weight? This would most likely take care of the many complaints you have.” The all too eager yet condescending young intern continued despite my blank stare, “Have you had a sleep study done?”

How many times had I been in this situation? Change the doctor, but keep me there, in the crazy patient’s chair. “Well, the patient has five children, a long history of miscarriages, a fairly recent history of a traumatic abdominal hysterectomy… couple these with the recent death of her father to cancer and basically all normal testing… clearly she’s a depressed, middle aged woman hitting the Ben and Jerry’s a little too much and addicted to Lifetime movies.” Or something like that.

What’s worse than the tiny intern with a huge ego, was the troll under the bridge. I still had to face my PCP who listened to me a little less than a mother who’s heard “Mommy, mommy!” for the hundredth time in an hour, from her 3 year old.

For the better part of two years, I’d seen her for so many things. Each time I’d ask her why my bones were breaking so easily. I told her I was shrinking, to which she replied “It’s impossible to shrink an inch and a half in a year.” Then laughter. I’d ask her why the nausea & vomiting, low oxygen, and migraines were there… all of this was ignored and off to another specialist I’d go (for a similar experience), with more Prednisone in hand. When she didn’t see hardcore proof (i.e. a lab tests or a specialist’s report confirming the symptoms in front of her) the things simply did not exist, despite glaring symptoms.

Another specialist I’d seen did care and did see the disturbing, rapid transformation and accumulation of symptoms, so he sent me to my PCP for testing. I later found out that this specialist feared all along what I had. He had been warning me that Prednisone was dangerous and he hated it. I didn’t. I loved it. It was the only thing that relieved my severe neuropathy pain, the nausea, vomiting and migraines. Without it, I was in the E.R. at least once a week.

I suppose I could cut the PCP some slack and say that every doctor, when they themselves are the young intern, dream about the day when they can show off their seniority and knowledge (let’s not forget power) in front of another young intern. I could say this, but I won’t. Not when I know there are the most wise, sympathetic, world renowned and respected doctors, who’ve been practicing medicine longer than most interns have graced this earth, yet they treat the interns (and patients) as equals. They remain humble.

No, this PCP had no excuse for demeaning me for twenty minutes in front of this man. Alas! She did finally do her job and gave me an exam. It took her less than thirty seconds to blurt out “OMG Andrea! You have Cushing’s Syndrome!” All of the cool was gone. She fumbled with her papers, stuttered, murmured to herself… She was a mess.

andrea-fShe left the room for ten minutes and returned more composed and more… herself. “Andrea, I’m sure you’ve read about Cushing’s Syndrome on the internet.” This sentence was delivered with the same tone and sarcasm as a Disney villain about to pounce on an unsuspecting bunny (or other furry creature… did I mention the “fur” I had sprouted?). She continued, “You have every symptom of Cushing’s Syndrome. The buffalo hump is huge and classic.” She went on about my symptoms. All of which I’d been begging her to look at before this appointment.

By the end of the appointment, she had decided that she’d need to talk to my then rheumatologist; I’d need all sorts of testing, and foremost, “You HAVE to get off of that Prednisone Andrea!” Certainly she knew I wasn’t convinced that her prescriptions of Prednisone were somehow my fault, however the wee intern might have sucked that one up. Perhaps he believed it was my rheumatologist that prescribed all of it; he did do his part as well. They were both in it together.

I left the office miffed and confused. “Well,” I thought, “Let’s go home and see what this Cushing’s is, on the Internet. Probably some sort of psychosomatic disease where you think yourself into the side effects of Prednisone.”

At the point where I began my Internet search, I had changed from an active, really attractive (I can toot my horn, ’cause it ain’t so now) about to be 40 year-old, homeschooling mom of five beautiful children. I was in bed for 3 weeks prior to my PCP appointment. I found out later that my family thought that this was it, I was dying. Indeed, I was close to death and it’s a miracle that I didn’t die.

I had gained 40 lbs. for which easily 10 of it rested on the top of my back. The Buffalo Hump. The rest was hanging out in strange pockets of fat all over my middle and face. I was disoriented and in cold sweats all of the time. Everything hurt.

On the evening of that fateful Friday after my PCP appointment, I joined a Cushing’s support group online. It took me three weeks to compose my introduction post because I had not the energy, nor the wherewithal to finish it. In the meantime however, I found out enough about Steroid Induced Cushing’s Syndrome to know that I was in big trouble.

Every bad side effect one can get from steroid use, I am getting or have. What’s worse is, my adrenal glands have atrophied. They won’t wake up and naturally produce cortisol that our bodies vitally need. Every organ and gland in our body relies on the production of cortisol. When you have Cushing’s, you’re in a real pickle Fred.

With me, I’m continually in either Cushing’s mode or Addison’s mode. Two opposite diseases. You’d be surprised at how many people in the medical field do not understand this. Most disturbing is how many endocrinologists don’t understand it. My body is used to high levels of cortisol so when I try to wean off and my body gets stressed, sick, injured, needs surgery, etc., I go into adrenal insufficiency with the chance of adrenal crisis.

Ahh, adrenal crisis! My nemesis! Is it? Isn’t it? Hospital? Just a Prednisone Boost? These are questions I ask myself daily. I was very near dying during those few weeks before I saw my PCP, because my body was literally shutting down. Again, I’m still amazed that I didn’t die.

Right. I realized for me, a person with autoimmune disease, with all sorts of crazy symptoms, weaning down to a healthy level of cortisol was going to take another miracle. Those message boards? Every time I went to send a personal message to a member that I could relate to in experience, they were dead. Dead. Young women, neglected by so many doctors who thought that they too, were fat and depressed.

Monday came and I called my PCP as scheduled. When she answered the phone she acted as if she didn’t know why I was calling. Before a minute was up, I realized she was getting as far away from admitting I had Cushing’s Syndrome as she could. Both she and my rheumatologist had been prescribing me prednisone without any solid diagnosis (at that point). Basically the Prednisone was completely unwarranted. She told me to wean off of the Prednisone and “Um okay?” then let the silence hang there. I was speechless (and as you’re well aware of at this point, is pretty darn near an oxymoron).

I took it upon myself to see an endocrinologist, who I owe my life to. He ordered a bone density test, a bunch of labs, told me to get a medical alert bracelet ASAP and a whole lot more. He was shocked that none of this had been done.

The bone density test showed that my PCP was half right, I didn’t lose an inch and half off of my stature in less than a year, I had lost two and a half inches. I began a strong osteoporosis medication. A little later, I was put on 5 liters of oxygen at night and as needed during the day, a bi-pap machine and I learned more about cortisol stress doses and began searching for new doctors.

For the next year and a half, I would see a total of 3 more rheumatologists, 5 neurologists and 2 new PCP’s. I was admitted to the hospital too many times to count. I saw 5 more specialists, wasted tons of money, precious time and was demeaned further than I could have ever imagined coming from people who are supposed to “Do no harm.” at one of those big name clinics. Same thing: fat and CrAzY. At the end of it all, I had given up hope. I was on more Prednisone than when I had first seen my endocrinologist.

My teeth had begun rotting because of the calcium loss and my Sjogren’s Syndrome did not help matters there. I had 6 extractions in 3 months and was never able to get back down to the 10 mg. of Prednisone I had begun with. Stress, illness and then having to let the beautiful eyes of our children watch it all…too much.

I saw my endocrinologist for a checkup and he yelled at me. I yelled at him. We both yelled together and then he picked up the phone in front of me and called a few specialists (the most-awesome-est specialists the world has to offer) and made me appointments with them. These doctors graciously took me on as their patient and began working as a team with my endocrinologist to get me off of this Prednisone.

Well, it’s been 8 months since that loud, intense “time of fellowship” with my endocrinologist. Despite the fact that my teeth have deteriorated to the point where I will have them all extracted on Jan. 2, 2014 (Happy New Year!)… and I found out I have both thyroiditis and hyperparathyroidism and well, a bunch of other … stuff. I’m due to wean down to 9 mg. of Prednisone on Thanksgiving day! I’ve lost a little weight. There’s so much to be thankful for!

I have lost much, but what I’ve gained in return, I would never, ever give up. My faith and that of my family’s, has grown in ways that would never have happened had I not gotten this dreadful disease. I found many things. I have found that my husband really means it when he says that I’m beautiful. My children mean it… I have what many have deemed, “The Ugly Disease” yet I feel more beautiful than I ever have. I feel more blessed than I ever have. Most importantly, I remembered and again found my hope, through faith.

Faith is the essence of things hoped for, the evidence of things unseen. When those of us with serious and chronic illness, have no faith in a Hope, we are dead persons walking. Had my endocrinologist not been divinely appointed to verbally kick my butt, there’s no doubt in my mind that I would not be here trying to type this story of mine.

I can’t write nor say a thing without a moral. So the moral of my story is this: know who and what your hope is in. Know what the unseen things are and have fat faith. Take your illness and use it. Use your life! It’s beautiful!

Article reposted with consent of the author from Have Faith: Cushing’s Syndrome

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Melissa F, Pituitary Bio

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golden-oldie

Melissa F was interviewed on BlogTalk Radio November 3, 2010. She has had pituitary surgery. Archives are available on BlogTalk Radio and on iTunes podcasts.

From the Clutches of Cushing’s

A journey through Hell… with a happy ending
by Melissa Fine

The most insidious aspect of Cushing’s Disease is, while it is attacking you physically, it is destroying your self-esteem, your peace of mind, your very spirit. That more doctors, psychologists, psychiatrists, drug, alcohol and weight-loss counselors (and the list goes on) don’t know how to recognize something that, in retrospect, seems so blatantly obvious is appalling—and not only tragic, it is, in my opinion, criminal. I often wonder how many Cushing’s victims we lose to suicide because they were not able to get a diagnosis before they lost the will to live… simply because no one thought to look for the definitive answer in their blood, urine or saliva. I am certain that Cushing’s isn’t nearly as rare as the doctors believe it is. What is rare is their ability to recognize it.

This is my story…

First, you need to know that I was always a pretty happy girl (though PMS- related mood swings have always plagued me). I come from a very close family, always had a lot of support, had a group of true friends I could count on, and was always very driven to accomplish my goals. I moved to Las Vegas from Southern California in 1994, right after graduating from UCLA, to move in with the guy who would become my 1st husband (Rat Bastard!). My goal in life was to be a writer, and within a month, I landed a job with a magazine publishing company and was getting paid to do what I love. You should also know I was always way too skinny. No matter what I ate (and I was a picky eater, but what I did like, I ate as much as I wanted of it), I was lucky to keep my weight above 100 pounds. I was happy if I could maintain 105 pounds, so I didn’t look so gaunt…

In 1995, I started noticing something wasn’t right with me. I had every reason to be thrilled with my life, but I was constantly blue. Down. Not tragically depressed—that would come later—but I just never seemed to feel happy. I also found myself complaining of body aches and fatigue all the time. And I kept noticing big, unexplained bruises on my arms, buttocks, and thighs.

In July 1995, I was covering the opening of a new casino/spa in Mesquite, NV. I came out of some exotic acupressure chakra-cleansing massage with one thought: I WANT BEEF! Now, the mere smell of steak would always nauseate me, but I was starving and steak was the only thing on my mind. I ate a 16 oz. New York Strip plus a ½-pound of crab for dinner. Woke up the next morning STARVING and ordered another steak to go with my eggs, hash browns, toast and pancakes, and devoured it all.

That’s when I knew something was really wrong.

Over the next five or so years, I went to many doctors with seemingly vague, unrelated symptoms. I was always famished, so by this time, I was 145 pounds. The depression was also heavier, but at the same time, I felt a constant sense of anticipatory anxiety, like something was about to happen. In less than 10 minutes, a psychiatrist labeled me with “bi-polar 2” and I was thrown on mega- doses of serious anti-depressants and anti-psychotics. I caught every cold, was always bone-tired, constantly in pain, and was finding it more and more difficult to focus on anything. I went on and off various anti-depressants, none of which seemed to work for any length of time. The consensus among the many medical minds was that I needed to diet and exercise.

2000 brought a lot of change—and not the good kind. I found yet another new “family” doctor. This guy, though, actually tried. He noticed, after running a blood panel and looking at my many bruises, that my red blood cells were “abnormal” looking and that my white blood count was up. Up enough that, just to be safe, he wanted me to see a specialist. He told me not to be worried that “oncology” was on the specialist’s wall… he was just really good with blood.

By late August, I was in the oncologist’s office. After looking at more lab results, he promptly scheduled me for a bone-marrow test—which, in his opinion, was just a formality. He told Rat Bastard and me that I definitely had leukemia. My soon-to-be ex-husband asked him flat out: “Is there any chance that this could be something other than leukemia.” The good doctor said, “No. She has leukemia. We just need to find out which kind.”

Bone marrow tests take six weeks to come back. Six days before (and about two weeks from my 30th birthday) the results that would tell me which kind of leukemia I definitely had came back, Rat Bastard decided he “didn’t feel the same way about me anymore” and walked out.

Imagine my surprise when the good oncologist didn’t find the “Philadelphia” chromosome he was expecting to see. Still, he stuck to his guns and was really, really sure I had leukemia. He then took a job at MD Anderson in Houston, TX, but insisted I see his other good oncologist every six weeks or so to keep looking and monitoring my white blood count and my screwy red blood cells. After many months passed and my condition worsened with no explanation, the second good oncologist told me, “You are a ticking time bomb.”

Not helpful.

So, my wonderful boss (who was also a good friend, and, as it turned out, was the guy I was supposed to marry!), paid to send my mom and me to MD Anderson to speak again with the first good oncologist, who was now heading up a leukemia department of his very own. Time for bone-marrow tap Number Two, because he was positive that pesky Philadelphia chromosome was there somewhere.

It wasn’t.

I was back to square one. Only now body parts were starting to break. I fractured my foot by stepping out of bed the wrong way. I tore my meniscus— an injury I was told is usually found in professional tennis players—by doing a single jumping jack in a futile attempt to exercise. A new specialist ran a bone density test that showed I had osteopenia, the precursor to osteoporosis. Another specialist discovered I had insignificant, benign tumors on my adrenal glands—something, he told me, I had in common with approximately 25% of the population. But those revelations were the least of my concerns. The depression turned into an all-consuming black hole. For the next three years, not one day went by that I didn’t sob uncontrollably. I couldn’t do my work, because I couldn’t concentrate long enough to edit a simple story. I couldn’t read a book or even sit through a half-hour sit-com. I no longer recognized myself in the mirror. Even worse, old friends and even my own cousin—people I hadn’t seen in a few years—didn’t recognize me either. They literally walked by me as though I were a stranger. My physical appearance was that dramatically different. I would wake up at 5 a.m., ravenous, and I would FORCE myself to wait until 6 a.m. before I would allow myself about a third of a box of Cheerios with non-fat milk. It was the only time of the entire day that I would actually feel “full.” It only lasted for about two hours, tops… but for that brief window, I found relief from constant hunger pains.

Alone, I no longer knew my own mind. I hid away in my craft room and started endless scrapbooking projects that I never finished. The pretty paper and nifty hole-punches somehow made me smile a little. Like many, I would imagine, I started to self-medicate. Prescribed painkillers.

Thankfully, mercifully, my family bonds were stronger than ever. My parents even moved to Las Vegas to be near me. And that guy, my boss, Glenn… though he met me in my 20s, when I weighed 100 pounds, married me in my 30s, knowing I was truly sick, not knowing what illness I had, and at my heaviest. I was 188 pounds on my wedding day, and he made me feel like a beautiful princess.

At some point around 2003, I had yet another new family doctor. Overall, his diagnostic skills were, at best, questionable. He knew just enough to send me to other specialists. But he was generous with his prescription pad, so I continued to see him. I do, however, owe this particular doctor a huge debt of gratitude. He was the first to mention the word “endocrinologist.” I didn’t know there was such a thing.

Many lab tests later, the endocrinologist told me I had too much of something called “cortisol.” She became annoyed when I asked her what that meant. She faxed her notes back to my family doctor. I noticed she had scrawled the word “Cushing’s” with a question mark after it. I told my doc I didn’t know what

Cushing’s was. His exact words were: “Well, I do know what it is, and you don’t have it.”

The endo disagreed, I guess. She had me scheduled to have my adrenal glands removed. Somehow, 10 days before my surgery, my many questions and stubborn attempts to understand why I was going under the knife really pissed her off. I received a certified letter informing me that, due to my “abusive and indignant attitude,” I was “fired.”

Meanwhile, my mom started Googling. She read the symptoms of Cushing’s Disease as though it were a page from my diary. It was a perfect fit. Except that, according to what she had learned, the lab results weren’t making sense. They were pointing to my pituitary gland, not my adrenals. I cancelled the date with the surgeon and headed back to the family doc’s office. He was quite pleased with himself, claiming he knew it was Cushing’s all along. (He still takes great pride in that epiphany. Why let the facts stand in the way of a good story, right?)

Family doc told me it was great news that my pituitary gland was the culprit: All I would need is a highly focused beam of radiation and some salt pills, and I’d be as good as new. He filled my prescription and sent me to another endocrinologist.

This guy was clever. He actually sent me for an MRI. Unfortunately, the MRI showed nothing. He was, however, in agreement with the previous, previous, previous doctor who told me the adrenal tumors were nothing to worry about. I trusted him, because he dropped the name of a renowned neurosurgeon at USC in Pasadena: Dr. Martin Weiss. I did some research. Dr. Weiss was the real deal—a graduate of Dartmouth and Cornell and a professor of neurological surgery. Finally… an honest-to-goodness expert.

Husband and I packed our bags and were off to Pasadena for a venous sampling. Who knew there was such a test? I found myself in the bizarre position of praying with all my might that I had a brain tumor.

Waiting, waiting, waiting…

Dr. Weiss confirmed that the MRIs did not show the tumor, but he did point to a microscopic something-or-other at the base of my pituitary gland that was tilted ever-so-slightly. He explained that he had, at best, a 50–50 chance of finding the tumor and removing it. He also told me that salt pills weren’t going to do the trick.

In December 2004, Dr. Weiss successfully removed the tumor from my pituitary gland.

This is the part of the story where I’d like to say I dramatically awoke with remarkable bravery and perfect hair to a room filled with calla lilies. Instead, my eyes opened to four or five post-op nurses, I was hooked via a tangle of cords to various machines, my mouth was so dry my tongue was stuck to my palate, and I was frantic to find a toilet. Bedpans just don’t work for me and my bladder was going to explode. After much arguing and cursing, the nurses decided unhooking me was safer than allowing my blood pressure to go any higher. They rolled over a porta-potty, I went forever, and no sooner did they re-hook me than I had to go again.

Learned a new term: diabetes insipidus.

The morning after being released from the hospital (prescription for diabetes insipidus filled and at arm’s length), I remember that, for the first time in nearly a decade, I couldn’t finish my breakfast. I was full.

I’d love to end it with that perfect tagline, but…

Back in Vegas, the brilliant endocrinologist put me on the whopping dose of 20 mgs of hydrocortisone a day. Anxious to “jump start” my adrenals, he quickly lowered the dose to 10 mgs.

After more than a year of seeing a cardiologist for my racing heart; a (mis) diagnosis of panic attacks because it felt like I had an SUV parked on my chest; repeated bouts of nausea and dizzy spells; low blood pressure; increased joint and muscle pain; more depression; and a complete neurological work-up for symptoms too similar to MS for comfort; my incredibly insightful endocrinologist told me to stop coming to his office, go home, and praise God because I was “cured.” In what can only be called a surreal segue, he then added that I should also praise God for my inability to get pregnant, because children are so selfish and self-centered that they only degrade your quality of life. Not surprisingly, he retired from medicine shortly thereafter.

It was at this point that I found the Cushing’s Help and Support boards and verified that I was not, in fact, insane.

One doctor’s name was repeatedly touted: Dr. William Ludlam. He sounded like the savior of all endocrine-challenged souls. I was astounded when he, personally, actually took my call. After listening patiently to my story, he informed me that I was not yet his patient, and therefore, he could not and would not offer me any medical advice or instruction over the telephone. He then told me a story of a hypothetical situation in which certain familiar-sounding symptoms would, to a trained hypothetical specialist, be immediately recognized as the brink of full-blown adrenal failure. I took the hypothetical hint, did some quick online research—and (following only my own hunch, rather than immediately seeing a local doctor as I should have done) took a significantly higher dose of Cortef. Within an hour, I felt human—a feeling I hadn’t known in more than 10 years.

Dr. Ludlam made room in his schedule and, the following week, off we went, at last down the road to recovery.

I celebrated my 40th birthday last month. As 2011 rapidly approaches, I can finally say that my adrenal glands are now functioning on their own. I have not had the need for Cortef in more than a year. I have battled the addiction to pain killers and am emerging as the victor. My size 4 jeans once again fit, and while I still fight depression, it is no longer my primary state of mind. Slowly, I’m regaining energy and enthusiasm. My thoughts are clear, my will is strong, my creativity is restored.

I live.

—–#—–

If you or a loved one is suffering with Cushing’s or Addison’s or you believe you might be, and you need to talk, please feel free to contact me with any questions or simply for an understanding ear. I can be reached at mfine@casinocenter.com (please put “Cushing’s” or “Addison’s” in the subject line) or follow me on Twitter @SinCityTweeter. My thanks and ever-lasting gratitude to MaryO, www.cushings-help.com , and all the fellow Cushies who helped me along the way.

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Ginger’s Father, Adrenal bio

1 Comment

A Golden Oldie

this story is of my father. He was a or nurse on the transprt ship the usst sea barb during ww2, he graduated high school at age 16 and he then went to simpson college and had completed over two yrs when the war broke out. he signed up seeing how he was studing to be a doctor they signed him up in the corps.. after the war ended he went back to school. and then a year later signd up for the reserves. he continued to go to school ,work part time and work in the reerves. he and mom had two children by 1953 and he continued to do thest things. during this time some kids drove past him very fast and crashed their car. my dad getting off of the reserves and still being in uniform stopped a couple of the kids where dead but he did save the others by stabiliting them tell help arrived. and one young adult had major trama dad took his uniform jacket off and wrapped him up saving hs life tell help could get there. dad came home and mom seeing him covered in blood screamed until my dad calmed her and told her it was not his.

the year was 1957 my dad was starting to show signs of the disease he had lost an 1inch and half and at home he used to be a loving and decated husband and father but he was having more problems controling his emotions…he was in pain allot. the reserves still took my dad. and my dad had gooten a B/S degree in biology and education and he had then transfered to a methodist seminary to become a minister in 1950. by 1957 he had a nother degree and had completed chaplain school with thearmy reserves.

in 1961 i was born and the following spring he had a tabogoning accident which he could not move from and he wsa sent to fargo north dakota where it was discovered he had cushings as they called it from there he was sent to minnaplais/ minn where he stayed for 265 days. he had four major surgeries and 11 minor ones. trying to correct the symptoms of the disease. he had his gallbladder removed  mar 1963, due to gallstones, he had his adrenal glands jan/1963 removed due to the high levles of hormons.abscess from ruptured divrticulum .tepary colestemy repai at age 39 “1963”his doctor was dr. Pelzi he suffered from osteoperosis with fractures of th spine/back. clavicle and several ribs more then once.

after a serious illness in apr 1962 he was sent to fargo with compressed fractures of the spine, ankle edema, weight gain and th fractures.at the minneapolis hosp he showed he was in the late stages of the disease he had osteoperosis, with mutliple compressions fractures on inttering the hosptial in dec 1962 they found he had diverticulitis  of the sigmoid colon,5/9/63 with abscess they where drained at surgery 1/11/63 in mar at the same time they took his adrenal glands they took his gallbladder due to chronic chelecyelithiasishe was put on replacement hormone thearpy.he had high bllod pressure due to cushings. he then had to have more surgery to correct colon 5/14/1943 problem with aneatomeisi a tempary cocestomy was done and ended on 7/3/63 when  the colestomy was closed and his large bowel was then re-anastemesed.    on 7/5/1943 his family was called and told he was dying and there was nothing they could ddo to help him. mom rounded up us for kids and took us up to the hospital  dads parents had gotten there thirty minutes before and they pronounced my dad dead when they arrived.   when we got there mom called my dads name and he sat up in the bed and talked to her.  he got out of the hospital in sept of 1963. the military retired him and the methodist church also did. he was walking with the add of churths and a cain. he also could not longer control his emotions.

when he had entered the hospital they had given him a year to live. or they gave him the option for them to experiment on him. due to his young age and him being a man they felt like the research could help allot of people. the studdied him to find where the disease can from and what it did to all the systems of his body. they gave him a pention and all the hospitals etc was free due to him being in the military but on inactive statis. my dad choice to help people. he was 39 years old and i was two years old.

when dad got out of the hospital he would be calm and kind and the next mintue a raging out of control person. even though he was very weak and never could walk well picking up his feet as he walked but when he got angry he had the strength of ten men. at the hospital they had told my mom about dads changed behavior and wanted to instational lize him from then on. but my mom refused feeling he needed to be at home with his family.

dad lived and went from job to job every few months to maybe lasting a a year here or there.due to his uncontrolable temper. we moved to wyo. and he continued to go to the va hospital in cheyenne wyo trying to get stabilized.we moved from town to town and in 1964 my brother was born. dad was very unstable and wwas in constant pain. in 1967 he almost beat my mom and little brother to death. the law came and took him to the edge of twon and told him not to come back. a year latr a few dyas before his and moms divorce would have been final he called mom and begged her to let him come home she refused and he said I will kill myself mom had heard that one many times before and she said go ahead. he did on thier 25 wedding aniversary. the next day.

I tell you this story to let you know of my dad who was a good healthy man, who was a good father and dad he had two B/S degrees and was in the ww2 and in the military almost 20 years. he became a minister and was a good one i heard.  and then he got sick but instead of living without surgeryies etc he choose to help and let the doctors  experiment on him so it would help other people. his body shows his scars and i have some pictuers of him. the atopsy is a mistory abut the man who claimed to have done it said even though daddy ws 46 years old he had the body of a 98 year old man. he was lost four inchs in hiegth and wher in the last stages of canser…the md also said he did not know how daddy had lived that long with all his health concorns… i have many documents that back up what i have said… i have discovered them doing genealogy research…just me ginger hawn cooper

my dads name was Charles Hamilton Hawn the fourth..my oldest brother says daddy is in th medical books som wof the first in treating this illness…from 1962-1967

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