Andrea L, Pituitary Success Story, October 19, 6:00PM Eastern

Andrea will be interviewed on the BlogTalkRadio Cushing's Program on Wednesday, October 19 at 6:00PM

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

The Call-in number with questions or comments is (646) 200-0162

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

 

From Andrea's bio: 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.

 

40 Days of Thankfulness: Day Seven

Weight Watchers.

Yesterday, for the first time that I can ever remember, I bought size 12 pants. Even before Cushing's, I was bigger than this. Maybe it was just the company that makes them, cuts them more generously than others but still.

I've been a *bit* off-program since the summer but this will inspire me to get back with it.  I want to buy more 12s...and maybe 10s sometime.

 

 

Encouraging Cushies

Although these were written for people with fibromyalgia, these ideas would also work for someone with Cushing's.  8 Ways to Encourage a Chronically Ill Mom

I especially liked number 4:

Avoid telling her about the cures you’ve heard for her illness, the juice products you may sell that could help her, or about your mother’s cousin’s sister who has the same illness but still manages to raise five children and work full-time. Don’t comment that the diet she is on is harmful, that the medications are just a bunch of poison or say, “don’t you realize those doctors are just out to make money off of you?” She’s heard it all and if you can be her safe haven from that it will result in a deeper friendship.

I can’t remember how many suggestions I’ve had to fix my Cushing’s, my lack of energy, my fears of cancer recurrence.

I should take fish oil capsules, essential oils, selenium, antidepressants, SAM-e, join yet another gym, rejoin Weight Watchers, buy a Wii Fit…

Tried them all and none of it helps.

Read that article and send it to all your friends and relatives!  Her book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Conquering the Confusions of Chronic Illness), is out of stock but I’m adding it to my wish list!

What ideas have people suggested to you?

11th Doctor Sees 'Ghost'

Jackie is a local person (to me) :

 

From http://www.washingtonpost.com/wp-dyn/content/article/2007/08/10/AR2007081001808.html

 

By Sandra G. Boodman

Washington Post Staff Writer
Tuesday, August 14, 2007; Page HE01

The worst moment of Jacquelyn Silverman's two-year medical ordeal came on her 36th birthday. She had donned a new pair of earrings that were a gift from her husband and was trying to slip on her glasses to admire them when she realized her face had gotten so fleshy the spectacles no longer fit.

"I just started crying," she recalled. "I felt I was literally growing out of my skin."

Jacquelyn Silverman, second from right, today shows no signs of her medical ordeal. (Provided By Jacquelyn Silverman)

 

As Silverman learned much later, the mystifying constellation of symptoms plaguing her -- unexplained weight gain, stomach pain, severe acne, an awful metallic taste in her mouth, aching joints, the red rash on her neck -- was caused by a rare disorder that can confound experienced physicians.

Even after a Washington specialist (the 11th doctor she consulted) told Silverman he suspected he knew what was wrong with her, it took four more months of testing to be certain of the diagnosis -- and more than a year for her to fully recover.

"Everyone was treating the individual symptoms, but no one put it all together," she said. Several doctors suggested her problem might be psychological, Silverman recalled, a notion she flatly rejected. "I knew it wasn't. I kept saying, 'Something is wrong with me.' At times it felt like there was a ghost inhabiting my body."

Now 52, Silverman, who lives in Montgomery County, said her symptoms surfaced gradually when she turned 35. She began gaining weight and couldn't lose the 20 pounds she quickly packed on. Her longtime internist recommended a low-fat diet and exercise. Silverman joined Weight Watchers and a gym, but after two months hadn't lost an ounce.

"The more I would exercise, the more I got bigger," she said. Her face and fingers looked especially puffy.

Silverman said she spent the next year shuttling back and forth to the internist, who referred her to a series of specialists: a dermatologist to treat the acne that suddenly blanketed her face and back; a rheumatologist to examine her joints, which ached so much it felt like a recurrence of the mononucleosis she'd had when she was young; and a gastroenterologist, who performed a colonoscopy after Silverman complained of abdominal pain and bloating. Her dentist considered removing her fillings and replacing them with porcelain to eradicate the constant awful metallic taste in her mouth. Silverman's regular periods became erratic. She developed insomnia and hypertension.

"I was constantly hyped up and yelling at my kids," she recalled.

But no doctor could explain what was wrong. "I felt as though everything was ruled out -- but nothing was diagnosed," Silverman said.

Finally her internist suggested she might be depressed and should see a psychiatrist.

Silverman refused. She was convinced that her problem was organic; her husband never suggested otherwise. "He was unbelievable," Silverman recalled. "He'd say, 'You just have to keep seeing doctors until they figure it out.' "

At last one did. Silverman's internist, suspicious that her problem might be metabolic, referred her to endocrinologist Ace Lipson.

Silverman vividly recalls her first meeting with Lipson, whom she credits with salvaging her life.

"I walked in and started telling him my symptoms," Silverman recalled. "He listened and then asked me whether I had a picture of what I used to look like, which I didn't. Then he said, 'I need to do a lot of tests, but I think I know what you have.' I was so happy and so relieved when he said that."

Lipson remembers their encounter somewhat differently. He insists he was merely following up on the internist's "inkling of what was wrong. I'm not the hero."

The endocrinologist said he was fairly sure Silverman had Cushing's disease, a rare disorder that strikes about one in 500,000 Americans. Cushing's results in the overproduction of the stress hormone cortisol, which can wreak havoc with multiple organ systems.

Silverman, Lipson recalled, had the round "moon face" that characterizes patients with Cushing's or those on high doses of corticosteroids. Many of her other symptoms were classic manifestations of the disease. The usual cause is a nonmalignant tumor on the pituitary gland at the base of the brain.

Cushing's affects more women than men and is sometimes hereditary. Left untreated, it can cause serious illness or even death, according to the National Institutes of Health. Surgery to remove the tumor is standard procedure, but not a sure-fire cure: In an estimated 20 to 50 percent of cases, the tumor grows back, Lipson says.

The endocrinologist, who estimates he has seen about 20 Cushing's patients in his career, said that it can be a "very difficult diagnosis because the individual symptoms can lead you in very different directions" and because it is so rare. The disease can masquerade as lung cancer or psychiatric disorders, both of which cause similar symptoms.

"There have been stories of patients hospitalized on psych wards for years who really had Cushing's," Lipson said.

Silverman said she suspects that her father, who died in his 50s of a disease reputed to be lung cancer, may also have had Cushing's, though it was never diagnosed.

In March 1993, Silverman underwent a four-hour operation at the University of Virginia Medical Center to remove the brain tumor. She endured a long and rocky recovery in which she developed a form of diabetes for a time and had to be slowly weaned off steroids to replace the high doses her body had been manufacturing. Eighteen months after the operation, she finally felt like her old self.

"I am fine now and have been ever since," she said. Every five years she undergoes an MRI just to be sure there has been no recurrence.

Looking back, she recalls, her quest for a diagnosis was "really hard. It consumes you and becomes your life. My message is to ask, ask, ask questions. And don't stop until you have an answer." ·

If you have a medical mystery that's been solved, e-mail us atmedicalmysteries@washpost.com.

Wondering about the past

Technically, I didn't start to think about Cushing's until about 1983 when I was gaining weight uncontrollably even though I was staying faithful to my Weight Watcher's diet AND working out at the gym nearly every day.

I was always a chubby kid. Now I have to wonder if there was something lurking way back then. In 5th grade my parents were concerned about my weight and mentioned that my mom would have to get me a girdle. A few weeks later, when a new one arrived at home, I was worried but it turned out to be for my mom, not for me. Talk about a low blow to the self-esteem, though!

Later on, still chubby, my father went every now and again (maybe once a month?) to an endo in Providence. In those days, that was a big trip. I never knew what was going on - my parents didn't confide much in me, but later I wondered what kind of endocrine issue he might have had.

As a young adult, I know he had had awful, huge, acne. The kind where he stood on a stage in front of medical students. Maybe that was related to HIS secret endo issues.

Later, when I was a young adult, married only a few years, I had that awful, huge acne, too. Kids in the street would point and laugh at me. From people's expressions in the store, I gather that they were repulsed by this stuff on my face.

I couldn't take it anymore and got to a doctor. I was expecting the usual tetracycline I had taken throughout college. The doctor said that this acne was too bad for that. He injected antibiotics directly into each individual eruption. Then, I got the tetracycline.

I had trouble getting pregnant. I had a miscarriage early on. I finally took fertility drugs but they made me nuts. I was blessed to have one child. I am also an only child, as is my father.

I think that there are several generations of endo issues here. When my son was a teenager with awful acne, I had him tested for Cushing's before I took him to the dermatologist.