Wednesday, April 27, 2011

Think Like a Doctor: A Litany of Symptoms Solved! -

Thank you to Dr. Sanders and the New York Times for shining a spotlight on Cushing's patients and offering a different perspective for their family and friends who struggle to support them. -m

EXCERPT:  With a disease like Cushing’s, our specialist approach to medicine makes us seem like the proverbial blind men examining the elephant. Each specialist can identify what he is seeing, and yet the whole picture will be missed.

Most of the time, that kind of piecemeal medicine works just fine. But the problem is that the cases in which a different approach is required often are tough to distinguish from the bread-and-butter stuff we see every day.

April 21, 2011, 8:27 AM

Think Like a Doctor: A Litany of Symptoms Solved!

On Wednesday I challenged readers to solve a complicated case of a 76-year-old woman who became physically and mentally debilitated over a matter of months.

More than 500 readers weighed in with diagnoses that included porphyria, thrombotic thrombocytopenic purpura and lupus. As of late Wednesday night, 15 readers had come up with the right diagnosis. And the winning answer is:

Diagnosis: Cushing’s syndrome.

The first answer came early. At 12:54 a.m. Eastern time, Dr. Elizabeth Neary, a pediatrician in Madison, Wis., was the first reader to put all the patient’s symptoms together and reach the correct diagnosis.

The wide range of complaints that characterize Cushing’s syndrome was first described by Dr. Harvey Cushing in 1932. In this disease, the adrenal glands churn out too much cortisol, an essential hormone involved in our body’s response to stress. Cortisol helps maintain blood pressure, reduces the immune system’s inflammatory response and increases blood sugar levels — all vital processes for helping our bodies cope with biological and environmental stress.

But long-term exposure to high levels of cortisol can cause osteoporosis, diabetes, high blood pressure, muscle weakness, memory loss and psychiatric disease. It causes the skin to thin and weaken, making it susceptible to bruises that are often dark and dramatic looking. The lesions on this patient’s arms and legs were signs of this.

Cushing’s syndrome is unusual, but a milder version of the disease can be seen in patients who use steroid hormones like prednisone for the treatment of asthma, rheumatoid arthritis or other inflammatory diseases. However, in this case, the syndrome is believed to have been caused by a tiny tumor that was triggering the constant release of high doses of cortisol.

How the Diagnosis Was Made:

When the patient and her two daughters arrived at Waterbury Hospital, Dr. Rachel Lovins met them in the emergency room. She had been introduced to their mother some years earlier, but now she didn’t recognize the woman who sat before her in the wheelchair.

She had gained a lot of weight, her face was much rounder than Dr. Lovins remembered, and her hair, which had been dark and curly, was thin, gray and uncombed. Over the past year or so, Dr. Lovins had heard her friends talk about their mother’s weakness and decline. Seeing her now, it was clear that her illness had taken its toll. Dr. Lovins excused herself to allow the patient to change into her hospital gown. She would see her again once she had been evaluated in the E.R. and admitted to the hospital.

When she returned later, she stood in the doorway and watched as Dr. Chris Mikos, an E.R. physician, lifted the woman’s hospital gown to examine her abdomen. When he did that, Dr. Lovins saw that the woman had red, almost purple stretch marks on her abdomen.

Suddenly the whole case made sense. Dr. Lovins realized the patient might have Cushing’s syndrome. These stretch marks, known as striae, are the result of the thinning of the skin caused by the excess cortisol. It’s a classic finding in Cushing’s. The patient’s primary doctor may not have seen these marks because she probably didn’t have this debilitated elderly woman change into a gown for every visit.

The test used to look for Cushing’s syndrome is called the dexamethasone suppression test. In this test, you give the patient a dose of a steroid hormone, dexamethasone. If the patient has a normal stress hormone system, then the amount of cortisol in the body will drop dramatically as the body reacts to the steroid and begins to suppress its own cortisol production. A normal patient would post a reading of less than five when it’s measured several hours into the test. This patient’s cortisol was eight times that.

Most of the time, Cushing’s syndrome is caused by a tumor in the pituitary gland in the brain, which in turn causes the adrenal gland to overproduce cortisol. In these cases, surgical removal of the tumor will cure Cushing’s.

But in this case, no tumor was found in the pituitary or elsewhere in the patient’s body. Even so, her doctors still believe that a tumor is triggering the excessive cortisol release, but the tumor is too small to locate.

This patient was started on a medication that prevents the overproduction of cortisol, but she had to stop because of side effects. She is waiting to start the next medicine. If that fails, she will have surgery to remove her adrenal glands. When I saw her last she was doing better but wondered out loud whether she would ever walk again.

Why It Was a Difficult Case:

Because cortisol is a hormone that affects every part of the body, the effects of Cushing’s syndrome are wide ranging, and there is no single symptom that announces that a patient has the disease.

Some of this patient’s complaints were pretty common for a woman her age. She’d gained weight. She was tired. She was depressed. She had high blood pressure. She had cataracts. She had swelling in her legs. All of these are symptoms of Cushing’s, but they are also common in patients without Cushing’s.

On the other hand, she had some unusual problems as well. Her muscles were weak. She had a high white blood cell count. She’d had a gastrointestinal bleed. Still, it wasn’t until you put it all together that it became clear that this woman’s many health problems were all related to Cushing’s.

The patient’s oldest daughter sent an e-mail to her friends telling the story of her mother’s ordeal and of her own frustration in pursuing this unifying diagnosis.

We were told that her psychological state, her neurological problem, her circulation issues and her excessive bleeding were an unrelated bunch of unfortunate circumstances conspiring to make this woman ill. “It happens when you are old,” we were told more than once.

With a disease like Cushing’s, our specialist approach to medicine makes us seem like the proverbial blind men examining the elephant. Each specialist can identify what he is seeing, and yet the whole picture will be missed.

Most of the time, that kind of piecemeal medicine works just fine. But the problem is that the cases in which a different approach is required often are tough to distinguish from the bread-and-butter stuff we see every day.

Readers who come to this column already know it will highlight an unusual case, and as a result, you are ready to take on all the exotic possibilities. Because of that, you are way ahead of the doctor who has to figure out which patient, out of all the patients she’s seen that day, needs something special. That recognition is the start of diagnosis.

Think Like a Doctor: A Litany of Symptoms -

This is so much fun -and so important to get the word out. Plus, this shows how much a patient suffers while them doctors fail to diagnose and treat the disease. SuRpRiSe -- the symptoms don't get better.

April 20, 2011, 12:02 AM

Think Like a Doctor: A Litany of Symptoms

Apr. 21 Update | Thanks for all your diagnosis submissions! To find the answer to the medical mystery, see “Think Like a Doctor: A Litany of Symptoms Solved!”

The Challenge: Can you solve a medical mystery involving a once healthy older woman who becomes physically and mentally debilitated in a matter of months?

Last month, the Diagnosis column of The New York Times Magazine asked Well readers to sift through a difficult case and solve a diagnostic riddle. Hundreds responded, and several of you succeeded in solving the mystery.

If you missed out, here’s another chance to play medical detective. Below you’ll find a summary of a new case. The first reader to solve it gets a signed copy of my book, “Every Patient Tells a Story,” along with the satisfaction of knowing you could outdiagnose Gregory House. Let’s get started.

The Presenting Problem:

An otherwise healthy 76-year-old woman with intestinal bleeding and complaints of weakness, fatigue and mood swings.

The Patient’s Story:

A fiercely independent and active 76-year-old woman had spent several years caring for her aged mother, who died at 99. Weeks after her mother’s death, she collapses at home. She was found to have bleeding from a collection of abnormal blood vessels (known as arteriovenous malformations) in her colon. In the months after treatment, her red blood count returned to normal, but she complained of persistent fatigue and weakness. She told her daughters that she was more tired than she’d ever been in her life, calling it “the big emptiness.”

The Doctor’s Exam:

Dr. Susan Wiskowski, a family physician in Hartford, had been the woman’s doctor for several years and knew her well. Until this year, the patient had been in good health for her age, with only a few medical problems: high blood pressure, which was controlled with just one medication; hypothyroidism, treated with Synthroid; and cataracts, which had been surgically repaired.

Because heart disease can manifest as weakness and fatigue, particularly in the elderly, Dr. Wiskowski referred her patient for a cardiac workup. She also referred the woman to a hematologist, to check on a slightly elevated white blood count detected during the bleeding episode.

Meeting With the Specialists:

Cardiology: A stress test suggested that the patient had blockages in the arteries to her heart, but an echocardiogram and cardiac catheterization showed no evidence of heart disease. These last tests revealed a narrowing of one of the heart valves, a condition that was probably longstanding but might have been contributing to her fatigue. Read the cardiologist’s report (July 2010).

Hematology: The hematologist could not identify the cause of the slightly elevated white cell count. All his tests, including a bone marrow biopsy, were unrevealing. Read the hematologist’s letter (July 2010).

The Follow-Up:

A few weeks after the cardiac workup, the patient seemed to have some kind of nervous breakdown, something which she had never experienced before. Despite her complaints of weakness, the woman veered between bursts of activity — endlessly cleaning her house, giving large dinner parties — and weeks of isolation and fatigue. She was sometimes elated, even giddy, telling any one who would listen that she’d found where heaven was located. More recently, she’d started talking about giving away all her possessions. Her daughters called 911, and the woman was taken to the emergency room at St. Francis Hospital in Hartford.


Hematoma: During her hospital visit, doctors discovered an extensive hematoma on the patient’s right groin and leg, which had developed after the cardiac catheterization a month earlier. She was admitted to the hospital.

Bipolar Disorder: A psychiatrist diagnosed bipolar disorder and started the woman on several medications to stabilize her mood. There was some family history of psychiatric illness.

Additional Test Results:

Treatment of the hematoma kept the woman in the hospital for several days, during which her daughters urged doctors to perform an M.R.I. or some other test that might identify the source of their mother’s persistent weakness and deteriorating health.

A neurologist was consulted. He ordered an M.R.I. of the patient’s brain and cervical spine, which was normal. Read the results on the patient’s discharge summary (Aug. 2010).

Nerve conduction studies that looked at the nerves that power the muscles in her arms and legs were abnormal. Based on these tests, the neurologist thought that she had nerve damage, probably caused by a recent viral infection. Read theneurologist’s letter (Sept. 2010) here.

The neurologist referred her to physical therapy, but it didn’t help. Read the neurologist’s assessment (Feb. 2011) here.

The Woman’s Family Intervenes

Frustrated by their mother’s continued decline, her daughters decided to try to intervene once again. They had jointly been appointed their mother’s health care proxy and made an appointment for her to see her primary care doctor. When Dr. Wiskowski entered the exam room, she expected to see her 76-year-old patient. What she found instead were two middle-aged women she’d never met. They introduced themselves as her patient’s daughters. Their mother didn’t want to come, the older daughter told her, because she was too tired and in too much pain. “I saw her last week; she knows what I look like,” she had told her daughters.

They had come in her stead because over the past months they had seen their mother transformed from the dynamic, energetic and competent woman they’d known all their lives to the disabled and sometimes demented person she’d become, battered and baffled by the many problems she’d developed.

Their mother had gained weight and lost hair, and her legs were swollen and painful. After trying a cane, then a walker, she was now in a wheelchair. The oldest daughter, who lived in California and hadn’t seen her mother in several months, told the doctor she barely recognized her mother this visit. Her mother’s ebullient personality had changed as well, and she was now making plans to move to a nursing home. Was it possible that all their mother’s problems were related?

The doctor listened but told them that she thought all their mother’s symptoms could be explained by the existing diagnoses. Sometimes a combination of illnesses can conspire to make the patient appear very sick, she added.

The daughters considered this conclusion sadly. The implication was clear. There was nothing more to be done. As the daughters prepared to leave, one of them showed the doctor cellphone photographs of lesions on the back of their mother’s hand and arm (see photographs at right). Dr. Wiskowski noted that the patient didn’t have these lesions a week earlier when she had last examined her. She told the daughters their mother should be taken to the emergency room to be fully evaluated.

Meeting With the Hospitalist:

Instead of going back to the same hospital where their mother had been cared for in the past, the daughters decided to take her to the emergency department of a different hospital in a town nearby where a doctor they knew practiced. Dr. Rachel Lovins ran the hospitalist program at Waterbury Hospital in Waterbury, Conn. (Hospitalists are members of a new specialty of doctors who specialize in caring for patients while they are in the hospital.) Dr. Wiskowski sent over key parts of the patient’s work-up to aid the doctor. This included reports from the specialists, a list of the patient’s medical problems (April 2010) andlaboratory test results (Feb. 2011).

The Challenge: Can you figure out what’s going on with this patient with weakness, psychiatric symptoms and these unusual lesions on her arms and hands?

Rules and Regulations: Post your questions and comments for Dr. Sanders in the Comments section, below. Dr. Sanders will be responding to select questions and comments throughout the day and into the evening. The correct answer to the case will be posted the following day in a separate posting on the Well blog. Select questions and comments from readers may also be included in print form in a coming issue of The New York Times Magazine.

The first reader to identify the correct diagnosis wins a signed copy of Dr. Sanders’s book “Every Patient Tells a Story” (Broadway Books). We will contact you if you are the prizewinner. Readers who enter their solutions on The New York Times Facebook page are not eligible to be considered in the contest pool; please enter your submissions in the Comments box below.

Push to spur more drugs for deadly rare diseases

I want my government to spend money helping its citizens. I hope to see more of these partnerships with the public and private sectors. The world will only get better this way.

- m


Push to spur more drugs for deadly rare diseases
1 day ago

WASHINGTON (AP) — Every other week, 7-year-old twins Addison and Cassidy Hempel have an experimental medicine injected into their spines in hopes of battling a rare, fatal disease.

And it's their mom who made that possible.

Tuesday, April 26, 2011

And You Thought I Was Pitiful Before...

Day 5 post op. Monday
Blood draw to check electrolytes and cortisol/ACTH after keeping medicine that will save my life!! away from me for 24 hours. That's a cool feeling.

Arrive at Lola's at 8:40 am to find 2.5 year old is sick and wants dada only. Mama can't lift and console. Family sleeps off two hours in family bed. Mom is in pain, trapped, and doses for 15 minutes.

Many dirty diapers later... E heads to Lola's around dinner time with no relief for fever or diaper contents. She's miserable. My poor baby. Mama can't even take care of you. She can't even take care of herself. I take Ambien 10 mg at 9 pm. Helloooooo? Take another half at 1145 pm. Sleep found me by 12:30 am and up by 7:30 am for ...

Day 6 post op.
Pediatrician appt at 9:15 am. Viral infection, possibly gastroenteritis. In and out of that place quickly. TYBJ.  Lovely hour in park wandering from bench to bench  to sit, watching J and E say hi (chase squirrels). Misting rain made E fly off slide, landed flat on her back 2 feet from the end. Squirrels were adequate and painless distraction. Ran for 45 mins. Dehydrated baby refuses 2 kinds of snow cones ($5), finally drinks 1/2 cup blue Gatorade (free in car).

Mama naps for 30 minutes, wakes to see local endocrinologist at 2 pm who is running 1 hr late. Nice waiting room. Dear Husband (dh) and I finish appointments 2 hours after arrival. Still can't nap. Head pounding.

1st post op mental meltdown with multiple crying episodes -- check! 

And it's only post op day 6 with umpteen + infinity left to go. And that's only hyperbole and a half. 


Urban Cowboy is recording on the Sundance Channel.

Mama is trying to relax in a jacuzzi bath-- no water up the surgery site! I'll drown.

I'll try again tomorrow. -m

Monday, April 25, 2011

Endocrine-Disrupting Chemicals

I think this is one reason Cushing's is more common than it used to be. Watch your endocrine disruptors, friends. - m

Pediatricians Call for Increased Regulation of Endocrine-Disrupting Chemicals

Corticosteroids conversion calculator (hydrocortisone, dexamethasone, prednisone, methylprednisolone, betamethasone

I needed one of these in the hospital. Excellent resource.

Worthless hospital pain scale thingee

I got the pain scale question constantly. I was confused every time! What to say? How to convey--make me feel better!! Too bad I forgot to print this out.

Funny post here on hyperboleandahalf blog.

Post op day 4

2nd pituitary surgery April 20, 2011

Day 4 post op April 24, 2011

Hydrocortisone (HC is generic, I pay extra for brand Cortef) dose: 20 mg at 8 am, 0 at 2 pm. Skipping afternoon dose to get hormones and electrolytes tested on post op day 5. Hormones get out of whack after pituitary surgery and must be tested. These include igf-1, cortisol 8am, ACTH.

Scheduled my 8 am appointment at Quest Diagnostics lab last week before surgery. Hope to get in and out of there quickly.

Feeling: overall, bad, which is good after pituitary surgery. Nauseous, really tired, muscle fatigue, stuffy head and nose, back pain, leg pain, calf cramps. Not pleasant at all, but I hope I feel stronger every day.
Get through by: Taking phenergen for nausea, vicodin for pain, bananas for muscle cramps and Gatorade, G2, and V8 juice to keep electrolytes balanced. Odd symptoms: ears ringing. Noticed this first when we got home last night. Constant insect chirping noise. Worse with buzzing from ceiling fan or sound machine. Very strange. I want to keep the room quiet and dark. I can stay focused better on movies better than tivo TV with commercials and distractions. I hate extra noise. Boo.

Naps. I woke from sleep at 430 am Sunday morning. Watched tv until 830. Back to sleep by 9:00 am, I think. Slept until 2:30 pm, ate, went back to sleep and up again at 630 pm. I'm tired but hanging in there. Back to bed soon, as it is already 12:30 am Monday!

See da punkin? No too tired to see da punkin today. Uncertainty over how I'd be without my afternoon dose of cortef made us decide to play it conservatively and try to store up energy for tomorrow's lab draw. Even skipped a shower for the cause. I just couldn't chance burning through all my hydrocortisone replacement when I may need it for little things, like blood pressure and electrolyte balance etc. I'll see her tomorrow. I'm sad but she needs me long term. I really do miss her, and I hope I can be an even better mama soon. We'll do our Easter celebration next weekend after some needed recovery time. Thanks to dh j for fetching things, feeding me, and overall loving me and making me get comfortable.
Thanks to my sister and her family for bringing us a yummy Easter meal of ham, sweet potatoes, broccoli casserole, and beans. It was so delicious, Ella. Thanks to all my fam for help: visits to the hospital despite full and crazy parking garages, high pony tails so they don't interfere with all the lying down an relaxing, and taking care of da punkin at home with extra love and attention. She's loving her some dairy queen now. Every ounce adds up. Thanks to everyone for all the kinds words and joke attempts. I love y'all!

Saturday, April 23, 2011

Saturday update: oUT!!!

Out of the hospital. Dropping off rxs now, one for pain (vicodin), another for nausea (zofran).  

I picked up my iphone for the first time an hour ago after 4 days. What a change!! I'm usually so busy on this thing.

I have been miserable. Worst pain and hospital experience of my life!!  I had the room dark, eyes closed, in pain, minimal talking, no noise, no tv. Just wanted to survive the pain, not from my brain. It was every muscle in my body. Perhaps my growth hormone, also produced in the pituitary, could have been affected during surgery, causing all the socially isolating symptoms. 

I'll feel better after a small subway sandwich and good nap in my own bed.

Thank you for following along and rooting for me. 

It's, tumorless Melissa, making a report

I have been discharged, and we are waiting for transport to wheel me down to the car.

I'm okay. Ready to sleep at home. Surgery looks like a success, given my major withdrawal symptoms from the cortisal even on day 1 post op. This road to recover will be very bumpy, and I will feel worse for 6-12 months before I feel any relief. M

Day 3 post-op update

We are waiting to get discharge clearance from internal medicine for the Diabetes Insipitis and then the neuro should write the discharge orders. Melissa is still tired from not sleeping for the first 48 hours post op. She did get some rest last night. She hasn't read any txt messages, but wanted to thank everyone for the messages and good wishes!

Wednesday, April 20, 2011

Bedside update

With Melissa now in recovery, the good news is she feels awful! This is a good sign that maybe the cushing's is gone with that tumor. She is managing now that she recieved her first post op dose of hydrocortisone an hour ago. Poor thing is still in quite a bit of pain and discomfort from all the rattling around done in her head. Will be moving out of recovery soon.

One 4mm tumor successfully removed!

Melissa is in recovery and the doctor said he was able to remove a 4-5mm tumor from the right side of the glad! No csf leaks or other complication to this point. Also didn't have to cut the gland so hopefully function of glad should be good. Waiting to go back to recovery, hopefully within the hour. Thanks everyone for your support and good thoughts!

Surgery is done... waiting for update

The doctor just finished the operation. Waiting for him to come out and fill in the details now. I'll post more info as I get it.

Pit tumor part deux - update

Nurse just updated us... Melissa is stable and doing well. Doctor is still operating and will update us with what he finds when finished.

Procedure underway

Melissa was wheeled back into surgery about 1 hour ago at 7:45 CST. First update due at around 10 AM CST.


We made it here 10 minutes before report time of 5:15 am. I'm standing in a line with 7 people ahead of me... All of us waiting to check in!! All of these people in this massive hospital complex are here because they have or support someone with a tumor. All of them scared like me but taking the steps to get better. Wow.



Here we go!

I just jumped online to schedule an appointment for my 5 day 8am blood draw, so I thought I would say HELLO!

I am super excited -- and pretty calm -- to be going on to surgery.  A Cushie lives to get to that 'next step' -- in this case -- pituitary surgery number 2.  The day is here, and I am ready.

Stay tuned and my husband and I will update here when we can. 

If you think about me today, I ask you to consider donating $10 to the I would never have known about Cushing's and how to get help without the founder MaryO and all the kind souls there. Click here to see how important this community is to me.

See you on the other side of Cushing's!!!

~Moxie Melissa

Tuesday, April 19, 2011

Tumor Willis & any Annoying Sister-- BE GONE

04-20-2011. Surgery schedule. 2nd pituitary surgery.

MD Anderson Cancer Center with IMCC (neurosurgeon Ian McCutcheon)

********* 3:00 am. i wake up, shower, last minute packing

4:15 am. I leave house to go to hospital 5:15 am. I report to admissions; prepped for surgery. 7:30 am. Surgery begins. Neurosurgeon starts real work. Surgery will take 3.5-4 hours. 11:30a-12:30 p. Neurosurgeon comes out to talk to family, once he knows I am stable and ok in recovery. I will be in recovery for 3-5 hrs until they release me. 4-6 pm. If ok, i'll be released to my private patient room. I am tired but extremely calm. I was at MD anderson today from 8:30 am to 4:45 pm. However, I've been waiting for this second surgery since October 2009. It is time. I don't know how I lasted 18 more months with this blasted disease! I am ready.

Gonna try to squeak out 4 hours of sleep.
Good night, everyone!
See you on the other side of Cushing's.

P.S. Please forgive typos. I'm exhausted.

Sunday, April 17, 2011


Well, it's that time again. I am three days away from my second pituitary surgery. Let's hope the neurosurgeon gets all the trouble maker tumor cells this time.

Ever on the quest to ensure the world knows about the dreadful Cushing's disease, I am reposting Pituitary Surgery FAQs.  Same surgery. Same doctor.  This time, we are going after the tumor on the right side of the pituitary and cleaning the edges of the tumor that was removed on the left side in June 2009.

Saturday, April 9, 2011

A Glimpse of Cushings.. by the numbers!

Thanks to Beth for creating this poll for us!
 A Glimpse of Cushings.. by the numbers!
by Beth Grant on Friday, April 8, 2011 at 9:38pm

I created a web-poll about 'The Face of Cushings' and had 55 of my fellow Cushies respond anonymously. The poll is still available to respond to as well, but here's the current statistics as of April 8th, 2011 - Cushings Awareness Day!

The first number after each response is the number out of 55 people who chose each response, then it's followed by the total percentage. I did forget to include some possible responses, so the poll cannot be viewed as 100% accurate, however this should give you a better picture of what we all are dealing with on a larger scale.

Please feel free to share this so more people can see some of what we deal with and perhaps raising awareness will help other people get closer to a diagnosis and faster treatment so nobody has to suffer like I have.

Thank you to all those who responded to my poll and who help to spread the word, and of course thank you to those who help support me!


Question 1*Have you been diagnosed with Cushings?
Yes  Yes   47   85%
No   2   4% 
Currently Testing   6   11%

Question 2*How long have you had symptoms for?
0-1 year   0   0%
1-2 years   1  2% 
2-4 years   3    5% 
4-6 years   8   15% 
6-10 years   9   16%  
10+ years   34   62%

Question 3*Were you diagnosed with:
Cushings Disease - pituitary   35   64%
Cushings Syndrome - adrenal   7   13% 
Cushings Syndrome - ectopic   0   0% 
Cushings Syndrome - cyclical   6   11% 
Cushings Syndrome - drug induced   0   0% 
Undiagnosed   7   13%

Question 4*How old were you when you first started experiencing symptoms:
15 or younger   15   27% 
16-20 years old   7   13% 
21-25 years old   9   16% 
26-35 years old   12   22% 
36-40 years old   7   13% 
41-50 years old   4   7% 
50+ years old   1   2%

Question 5*How old are you now?
15 years old or younger   0   0% 
15-20 years old   2   4% 
21-25 years old   3   5% 
26-30 years old   5   9% 
31-35 years old   10   18% 
36-40 years old   11   20% 
41-45 years old   6   11% 
46-50 years old   4   7% 
50+ years old   14   25%

Question 6*How long did it take for you to be diagnosed?
Less than 1 year   7   13% 
1-2 years   9   16% 
2-3 years   6   11% 
3-5 years   8   15% 
5-10 years   9   16% 
10+ years   8   15% 
Undiagnosed   8   15%

Question 7*How many doctors did you see before you were diagnosed?
1   5  9% 
2   2   4% 
3   4   7% 
4   7   13% 
5+   30   55% 
Undiagnosed   7   13%

Question 8*Which of the following did you get?
High blood pressure   22   40%  
Diabetes   2   4% 
Both   19   35% 
Neither   12  22%

Question 9*What symptoms have you experienced/are experiencing?
Weight Gain   55   6% 
High Blood Pressure   42   4% 
High Blood Sugar   28   3% 
Extra Hair Growth   46   5% 
Hair Loss   42   4%
Bone Loss/Broken Bones   28   3% 
Muscle Loss/Weakness   55   6% 
Fatigue   53   6% 
Loss of Menses   33   4% 
Stretch Marks   46   5% 
Flushed Red Skin   42   4% 
Buffalo Hump   47   5%
Swelling   48   5%  
Hot Flashes/Sweating   49   5% 
Sleep Disturbances   53   6% 
Vision Problems   37   4% 
Acne   34   4%
Bruising   42   4% 
Body Odor   30   3% 
Anxiety   46   5% 
Depression   44   5% 
Infertility   13   1% 
Other   21

Question 10*What do you think has been the WORST symptom you've had to deal with?
Weight Gain   26   47% 
High Blood Pressure   0   0% 
High Blood Sugar   1   2% 
Extra Hair Growth   0   0% 
Hair Loss   0   0%
Bone Loss/Broken Bones   1  2% 
Muscle Loss/Weakness   6   11% 
Fatigue   10   18% 
Loss of Menses   0   0% 
Stretch Marks   0   0% 
Flushed Red Skin   0   0% 
Buffalo Hump   0   0% 
Swelling   0   0% 
Hot Flashes/Sweating   0   0% 
Sleep Disturbances   2   4% 
Vision Problems   0   0% 
Acne   0   0% 
Bruising   0   0% 
Body Odor   0   0% 
Anxiety   1   2% 
Depression   3   5% 
Infertility   0   0% 
Other   5   9%

Question 11*How much weight did you gain?
0-50 lbs/0-22 kg   7   13% 
51-100 lbs/23-45 kg   20   36% 
101-150 lbs/46-68 kg   17   31% 
151-200 lbs/69-90 kg   8   15% 
200+ lbs/91+ kg   3   5%

Question 12*When do you get your best sleep?
Between 10pm - 6am   17   31% 
Between 6am - 2pm   23   42% 
Between 2pm - 10pm   7   13% 
None of the above I'm awake all the time!   8   15%

Question 13*Have you had any complications in other systems of your body that may or may not be Cushings related?
Oral   13   7% 
Gastrointestinal   33   19% 
Heart   19   11% 
Thyroid   28   16% 
Circulatory   14   8% 
Nervous System   11   6% 
Mental Health   28   16% 
Learning   16   9% 
Other   9   5% 
None of the Above   3   2%

Question 14*What testing did you have leading to a diagnosis of Cushings?
AM/PM cortisol blood draw   40  13% 
24hr UFC   50   16% 
10hr UFC   16   5% 
11pm/midnight saliva   33   10% 
High/Low Dex test   42   13% 
IPSS   13   4% 
ACTH Stim test   17   5% 
CRH Stim test   10   3% 
Head MRI/CT   49   16% 
Adrenal MRI/CT   26   8% 
Chest X-ray   12   4% 
Other   8   3%

Question 15*Which was the worst test you had to have?
AM/PM cortisol blood draw   3   5% 
24hr UFC   8   15% 
10hr UFC   0   0% 
11pm/midnight saliva   1   2% 
High/Low Dex test   6   11% 
IPSS   8   15% 
ACTH Stim test   0   0% 
CRH Stim test   2   4% 
Head MRI/CT   12   22% 
Adrenal MRI/CT   4   7% 
Chest X-ray   0   0%
Other   11   20%

Question 16*Are you currently:
Working   19   35% 
Going to school   3   5% 
Working AND going to school   2   4% 
Was working and had to quit   23   42% 
Was going to school and had to quit   0   0% 
Working and going to school and had to quit   2   4% 
Retired   2   4%   Never worked   4   7%

Question 17*What treatments have you had?
Unilateral adrenalectomy   4   4% 
Bilateral adrenalectomy   13   13% 
Transsphenoidal tumor removal   35   35% 
Gamma Knife Surgery or similar   4   4%
Daily radiation for a period of time   1   1% 
Ketoconazole   21   21% 
Metyrapone   2   2% 
Mitotane   0   0% 
Cabergoline   1   1% 
Cessation of steroid use   1   1% 
Homeopathic   7   7% 
Other   2   2%
Have not been treated yet   10  10%

Question 18*Were you able to be treated locally or did you have to travel?
All treatment was local   11   20% 
Some treatment local traveled for other   18   33% 
Had to travel for all treatment   18   33%
Have not been treated yet   8   15%

Question 19*Has your treatment been successful?
Yes I am in remission   18   33% 
No I am still sick   10   18% 
No I am still sick and I am testing again   4   7% 
No I have had a recurrence treated again in remission   3   5% 
No I have had a recurrence treated again still sick   9   16% 

Have not been treated yet   11   20%

Friday, April 8, 2011

Cushie Warriors

Many of you only know one person with Cushing’s.  It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment.  You have probably never known someone with Cushing’s before, right?  You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends.
You see, for us, we know MANY people with Cushing’s through website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated.  When it happens to us, we are often rendered speechless.  When we see our fellow Cushies meet the same poor medical treatment, we become incensed.  Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s.
For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list.
Every patient wants to be understood, supported, and cared for.  We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease.
Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’
(NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).

  1. Melissa, Texas.
    Pituitary surgery #1: June 2009.
    Pituitary surgery # 2: soon in April 2011.
  2. Sarah, Oregon.
    Pituitary surgery #1: Nov 2009.
    Pituitary surgery #2: March 2010.
    Pituitary Surgery #3: Sept 2010.
    BLA: April 2011.
  3. Alex B, California
    Pituitary surgery March 2008
    BLA July 2009.
  4. Krystine T, Washington
    1st failed Pituitary surgery March 1996
    2nd failed Pituitary surgery Dec 2002
    BLA Dec 2004
    3rd failed Pituitary surgery Sept 2009
    MEGA ONE DAY Radiation ZAP Aug 2010
  5. Jill, Denver, Colorado
    left adrenalectomy Nov 2006
    right adrenalectomy Feb 2008
  6. Karen, Hinesburg,Vermont
    1st Pituitary surgery in Portland OR, January 9,2006. Not successful.
    2nd Pituitary surgery in Seattle Washington July 9, 2007.
    CSF leak July 13, 2007.  I'm in remission.
  7. Christy, Oklahoma. 
    Pituitary surgery 9-2004 Oklahoma City
    BLA 11-2004 Oklahoma City
    Rest Tissue PIT 9-2006 Pittsburgh
    CSF leak repair with titanium after the last pituitary surgery and it was removed 5-2009.
  8. Beth, Winnipeg, Manitoba, Canada.
    Gamma knife
    December 2006 and again December 2008.  Still broken, and if the tumor grows more (it's been stable for a bit now), I'll likely be headed for a 3rd time!
  9. Justin K., Kansas
    Pituitary surgery, May 19, 2008.
    BLA, May 6, 2009.
  10. Jessica K., Kansas.
    Pituitary surgery, May 16, 2008.
    BLA, May 6, 2009.
  11. Bill K., Kansas.
    Pituitary surgery, August 14, 2009.
    BLA, June 2, 2010.
  12. Danielle, Massachusetts.
    Pituitary Surgery #1 Dec 16, 2009.
    Pituitary Surgery #2 February 11, 2010.
    BLA Sep 2, 2010
  13. Trisha T, Tampa FL
    Pituitary surgery 4/07
    Currently trying to avoid BLA with various meds.
  14. Cindy W, Kentucky.
    Pituitary Surgery 11-5-07
    BLA 03-07-08
    CSF Leak repair 10-28-08
  15. Lisa, Illinois.
    Pituitary Surgery 5-30-08
    BLA 11-4-09
    Still not cured.
  16. Susan G.
    Pituitary Surgery 7/07
    Cleared for 2nd pituitary surgery 10/10.
  17. Kimberly, Illinois.
    Pituitary Surgery 11-2-2009
    BLA 2-2-2011.
  18. Debra, Virginia
    Debra v. Gallbladder due to Cushings, 1/2005
    root canal due to broken tooth 8/2008
    Pituitary surgery 10/2008
    BLA  6/2010
    Sinus/leak repair 1/2011
    Surgeries offered and rejected == repair of foot muscles, lap band surgery; surgery for excess stomach acid
  19. Lisa O, Washington State
    3/25/2009-pituitary surgery
  20. April, KY.
    Unsuccessful pituitary surgery 1/15/10.
    Testing again.
  21. Elizabeth J, KY
    Pituitary Surgery 7-2-2009
    BLA Sept. 15, 2010
  22. Trisha S, Indiana
    Pituitary surgery 11/13/2008.
    Not cured - retesting.
  23. Lynne R, Oxford, England.
    Pituitary surgery April 2008
    CSF leak repairs: April 2008, May 2008, May 2008 (3 leaks in the space of 5 weeks), with meningitis as a result of the leaks.
    Issues due to pituitary gland removal: crohns disease, pernicious anaemia, life dependent on multiple medications [hydrocortisone, ddavp, thyroxine, hrt, growth hormone, colestyramine, Vit B12 injections etc, etc. ( oh, and it stole my life- and I'd quite like it back please)]
  24. Dara M, Limerick, Ireland.
    Pituitary surgery 29th June 2009
    got MRSA in sinus as a result, had surgery to remove scar tissue.
    MRSA is not for Christmas, for me it's for life xxx
  25. Philip B, New Jersey.
    Pituitary surgery at MD Anderson October 31, 2007.
    Testing for Recurrence since Jan. 2011.
    Replacing Growth hormone and Testosterone
  26. Donna, Winnipeg, Manitoba, Canada
    Pituitary surgery Aug2009.
    new tumor march 2010 but not told about it until sept2010 when it got to 9mm.
    had gamma knife nov. 2010.
    still waiting to be better. tumor has not shrunk yet
  27. Michelle, California.
    Pituitary surgery February 2009.
    BLA February 2010.
    Not cured. Testing. 2 tumors showed on MRI.
  28. Shauna N, Washougal, WA.
    Pituitary surgery 8/2/01
    BLA 2/5/02.
  29. Robin S, Salem, VA
    Pituitary surgery Dec. 14, 2006
    BLA June 16, 2010
  30. Lori, Great Neck, NY
    Diagnosed 12/1994.
    Pituitary surgery 3/1995
    Pituitary surgery 5/1997
    Pituitary surgery 7/1999
    Still sick. Possible Cyclical?
  31. Nan, New Jersey
    Pituitary Surgery, October 2010
  32. Dan, Delaware.
    Pituitary Surgery #1 August 2009.
    Pituitary Surgery #2 February 2011.
  33. Cyndie M, New Jersey
    Pituitary 1-09-2009
    Upcoming BLA 4-28-2011.
  34. Kim S., Pennsylvania
    Surgery #1 Jan 2010 positive for Acromegaly but was trying to find a cure for Cushings.
    Testing since Oct 2010 for Cushings.
  35. Kay, New Jersey
    1st & 2nd Pituitary surgery June 2008 - in remission
  36. Jenny, Iowa.
    Pituitary Surgery #1- May 2008.
    Pituitary Surgery #2- April 2009.
    Currently considering a BLA vs. pituitary surgery #3.
  37. Tanya, Buffalo, NY
    Pituitary surgery #1 - February 2010
    currently seeking re-diagnosis
  38. Denise P, Dallas,Oregon
    2003 Pituitary surgery Vanderbilt
    2004 canceled pituitary removal after screws were in (I was in pre-op) Vandy
    2004 Stereotactic Radiosurgery- Vanderbilt
    2005 Right half of Pit removed - OHSU
    2005 BLA - OHSU
  39. Cate, Georgia
    Pituitary surgery #1 and 2 -- August 2009.
    In remission.
  40. Kate, New Jersey
    Pituitary surgery #1 - Jan. 2007 (Failed)
    Pituitary surgery #2 - July 2007 (Total Pit Removal; Failed)
    CSF Leak Surgeries - Oct. 2007 (Failed; still have small leak)
    Open BLA with 18" incision - Sept. 11, 2008
    Gamma Knife Radiosurgery - Oct. 2009
    No pit, no adrenals, radiation damage to hypothalamus (cannot regulate body temp.)
  41. Pat, California
    Pituitary Surgery #1: August 2000.
    Pituitary Surgery #2 December 2007.
    Currently testing for surgery #3.
  42. Christy, New Mexico
    Pituitary surgery November 2010.
    Considering BLA
  43. Brenda, Alberta, Canada
    Pituitary surgery May, 2007
    BLA May, 2007
  44. Jamie, Washington State
    Pituitary surgery #1: March 2010.
    Pituitary surgery #2: April 2010.
  45. Melissa, Florida
    Pituitary surgery #1: March 2009.
    Pituitary surgery #2: December 2009.
    BLA to come?
  46. Vicki, Buffalo, NY
    Pituitary surgery #1: October 2009.
    Pituitary surgery # 2: April 2010.
    BLA soon to come.
  47. Gina, Georgia
    Pituitary surgery #1: March 2009.
    Bilateral Adrenalectomy: October 2009.
  48. Sherry C, Silverton OR
    1st pituitary surgery 3/2006
    2nd pit surgery 9/2006
    BLA 10/2006.
    Sick since 1999 but diagnosed in 2005.
    Tested for 1 year. Knew I had Cushing's since 2004.
    Still sick....but it's the aftermath of the damage the cortisol did to me and the steroids now.
  49. Melyssa, Colorado
    Pituitary Surgery # 1: August 2009.
    Currently testing again.
  50. Michaela, Toronto, Ontario, Canada.
    Pituitary surgery 1 -- June 2005
    Pituitary surgery 2  -- Jan 2008
    Pituitary surgery 3  -- July 2008
    BLA  -- July 2009
  51. Gisella, California
    Pituitary surgery #1: October 2009.
    Pituitary surgery #2: August 2010.
    Pituitary surgery # 3 or BLA to come.

Pituitary Adenomas

Several therapies are available to treat the ACTH-secreting pituitary adenomas of Cushing's disease. The most widely used treatment is surgical removal of the tumor, known as transsphenoidal adenomectomy. Using a special microscope and very fine instruments, the surgeon approaches the pituitary gland through a nostril or an opening made below the upper lip. Because this is an extremely delicate procedure, patients are often referred to centers specializing in this type of surgery. The success, or cure, rate of this procedure is over 80 percent when performed by a surgeon with extensive experience. If surgery fails, or only produces a temporary cure, surgery can be repeated, often with good results. After curative pituitary surgery, the production of ACTH drops two levels below normal. This is a natural, but temporary, drop in ACTH production, and patients are given a synthetic form of cortisol (such as hydrocortisone or prednisone). Most patients can stop this replacement therapy in less than a year.
For patients in whom transsphenoidal surgery has failed or who are not suitable candidates for surgery, radiotherapy is another possible treatment. Radiation to the pituitary gland is given over a 6-week period, with improvement occurring in 40 to 50 percent of adults and up to 80 percent of children. It may take several months or years before patients feel better from radiation treatment alone. However, the combination of radiation and the drug mitotane (Lysodren®) can help speed recovery. Mitotane suppresses cortisol production and lowers plasma and urine hormone levels. Treatment with mitotane alone can be successful in 30 to 40 percent of patients. Other drugs used alone or in combination to control the production of excess cortisol are aminoglutethimide, metyrapone, trilostane and ketoconazole. Each has its own side effects that doctors consider when prescribing therapy for individual patients.
CSF, Cerebrospinal fluid leak: A more rare, although sometimes expected, result of surgery is drainage from the nose of a clear, watery liquid called cerebrospinal fluid (CSF), which is a normal fluid that surrounds the brain. Large pituitary tumors lean up against a membrane that separates this fluid space from the nose, and a CSF leak may occur if this membrane is absent or opened during surgery. The surgeon will generally recognize a CSF leak when it occurs and will "repair" the leak by placing a small amount of abdominal fat over the leak. The patient may awake from surgery and find that it was necessary for the surgeon to place a small tube in the lower back to allow CSF to drain into a bag and help the leak to seal. The tube is placed while the patient is still under anesthesia, and it is not painful while in place. The tube (about 3 millimeters in diameter) will remain in the lower back for 3-5 days and the patient will be kept in the hospital during this period. After the tube is removed (a painless, approximately 15-second procedure), the patient usually will be able to leave the hospital later the same day with the leak sealed. In most cases, CSF leakage does not occur and the patient may expect to go home 2 to 4 days after surgery.
BLA, Bilateral Adrenalectomy: Surgical removal of both the adrenal glands.
Gamma Knife: This is a more focused radiation treatment than conventional radiation, which reduces the risk of hypopituitarism. It provides a large dose of radiation to a tumor so that when the tumor cells divide, they die. As this method depends on the rate of cell division, symptoms may persist long after the radiation treatment.
Radiotherapy, preferably with stereotactic radiation, is effective in controlling tumor growth in the majority of patients who have residual tumor after surgery.

Sunday, April 3, 2011

Fundraising Efforts

I created this ticker to show us how close we are getting to the goal of raising funds to support


This is my first time to raise money this way, so my methods are rudimentary.  If you decide to donate, please let me know, either by commenting below or some other way.  I will then update the ticker with the new donation so that we get an accurate reflection of our fundraising efforts.
Please consider donating $10 to keep the's message boards up and operating free for all those who need it.
I thank all of you for your support.
~ Melissa

Fundraising for Cushing's Awareness Month


Exactly four years ago in 2007, I cried at home after receiving a call from the doctor's office.  The nurse told me that my recent lab results, including a thyroid panel, were normal. That should have been good news, right?  WRONG. I didn't feel normal. In fact, I felt worse than I had ever felt before in my life.  That afternoon, I took to the computer to research my symptoms on the internet.  When I found the message boards, my mouth dropped. It took less than an hour to find my diagnosis.

My husband returned home after his work day less than an hour later. I announced, "I think I have a tumor on the pituitary, which hangs below the brain. I think I have Cushing's disease."

Not one day since has gone by without a thought of Cushing’s. I’ve spent many hours every day thinking about Cushing’s. Have you ever spent 1,461 days of your life sick, trying to save your life, and knowing that if you can’t convince doctors to help you that you may die?  It is not easy.  Life has not been easy for me or my family these last four years. This word and this disease have infiltrated my life.

I owe my life to MaryO, who founded the Cushing’s Help website and its message boards over 10 years ago after suffering with Cushing’s disease herself. MaryO set forth to create an online community that was lacking when she sought her cure.

I have met many shining souls and made incredible friends participating on the message boards in the past four years.  We were lost without each other. We each came to the message boards new and scared.  We leaned on each other, as we ran everything about our experiences through these people – these new-found and desperate friends who were in the same boat as us.  We learned from each other.  Together, we shared our stories of terrible doctors’ appointments where we were dismissed as fat and lazy.  We celebrated every high test result, every clearance for surgery, and all the other details that move us forward on the journey for this disease. In this community, we found the strength to keep fighting to get cured from the disease that we were sure we had but others weren’t. We Cushies have faced seemingly insurmountable odds, and we have done so together.

Our fury and outrage male us determined to protect future undiagnosed Cushies from all of our heartaches and woes.  We hold a strong desire to create a powerful online community, and in 2008 many of us started personal blogs. My blog Cushing’s Moxie is my platform for outreach, and to date, my blog has been over 116,000 pages views. 

I learned from people who had been in my shoes. It was only through struggles with doctors and testing to diagnosis to surgery -- with this process often repeated multiple times unfortunately -- and eventually to healing and happiness that I learned what this disease is, how it truly presents itself today (not 20 years ago), how it affects the people who have it, and how to best guide myself through the quagmire.  Because of MaryO's compassionate vision and my fellow Cushies’ guidance and support on the message boards, I have steered myself to diagnosis twice for a disease that most have never heard of and doctors consider too rare.  I just can't even imagine where I would be without the site.

With Cushing's Awareness Day approaching on April 8th and my 2nd pituitary surgery scheduled for April 20th, I decided to declare April as Cushing's Awareness Month.  Goodness sakes, you know we need the extra time!  It takes us that long to explain the intricacies of this dangerously elusive disease.

So there you have it. It is Cushing’s Awareness Month. 

As such, I decided to raise funds to support the website that saved my life.   For my friends and family who have followed me along this bumpy four-year battle, I ask that you consider making a donation to support the community that I have grown to love and call my 2nd family. 

Operating and maintaining the site takes money.  It is imperative to keep the site free and totally available to all who search the internet for an explanation to their confounding symptoms. We must keep the site operating for others like me who search for their cure.  I ask you to join me and donate to the support this important website.

I hope to raise $500 in April 2011.  Can I count on you to donate $10?

Cushing's is a terrible disease. It ravages the body and nearly destroys a person seeking only diagnosis, treatment, and control of the rest of their life again.

The world must continue to hear about Cushing's, as this disease is not as rare as doctors think. We Cushies believe it is only rarely diagnosed.  Please consider a donation to maintain a strong presence on the web for undiagnosed Cushies to find. 

I have many interesting posts planned for Cushing’s Awareness Month this April.  As I face a daunting second pituitary surgery, I refuse to let the opportunity to help someone pass me by.   On April 20th, I will go under general anesthesia and lie on an operating table while the neurosurgeon goes through my nose to cut out a second tumor on the pituitary, only centimeters from my brain. 

In the upcoming weeks, you might say to yourself:

“YIKES. She’s been through so much. I love that girl. I’ll ante up a donation of $10 for her Melissa’s moxie.” 

Putting words in your mouth? I hope so. 

Laying it on thick for an important cause,
Your truly,



Hello to all of you still following along. I wanted to tell all y'all some big news.

I have been diagnosed with cushing's disease again, and I'm off to surgery! I'll have my second pituitary surgery in Houston on April 20, 2011. 

I have many details to provide still, and I hope to find time to post back story soon.  I will say that we used our tax refund to purchase a new iPad 2, which will making sending updates from the hospital and post-op easier, I hope.

With surgery and the chance to return to the rest of my long life only 17 days away, I think of that 80s song:  The future so bright, I gotta wear shades.


I encourage you to do midnight testing every night in a row until you get your highs. Do not skip.

Get blood draws at midnight and again 30 minutes later.  Chew a salivary cortisol test swab while getting your blood drawn.  I got my biggest diagnostic highs doing this, after 4 years of trying to follow doctors' suggestions of tracking symptoms and only testing once a night around midnight. 

Remove the guesswork and pressure off yourself to know how cortisol ravages your body as it swings from high to low to high levels. Very few Cushies when their cortisol levels are high v. low, and frankly, it is quite unfair that we should have to know.  This disease is an enigma - a mystery wrapped in a riddle.  Until someone develops a cortisolometer, similar to a glucometer for testing blood sugar, a Cushing's patient may never know for sure.

Take control.  Your mission is to show up every night, and hang in there.

~Moxie Melissa