Did You Know You Have a Bill of Rights as a Patient?

 I encourage all of you to join and/or donate money to the Pituitary Network Association.  The serious tone is appreciated, and I always felt like they were on the patients' side.  Today, I want to share the PNA's Patients' Bill of Rights.  This disease beats down the patient, and sometimes, we forget what rights we have or should have.  Let this serve as a reminder on your journey to better health. Thanks to the PNA for all that they do.

~Melissa (emphasis below mine)

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Patients bill of rights

Preamble

The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them. PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world's largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders.

PNA is supported by an international network of the world's finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) By providing public awareness programs and educational seminars, (2) By assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive Web sites and referral program on these Web sites.

Our Rights

• Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world's population.
  
  
• The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.
  
  
• I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine. I have an inalienable right to be told of - and allowed to use, whenever possible, any and all medications and treatment methods past, present or future -which will complete or assist in my healing.
  
  
• Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.
  
  
• I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.
  
  
• I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state.
  
  
• There shall not be any financial, insurance, job, or promotional stigma attached to my diseases discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man's ability to rectify.
  
  
• My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment.
  
  
• I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse.

 

• I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.

Adrenal Crisis Letter

When multiple pituitary surgeries fail to resolve the symptoms, Cushing's patients often have to move forward by having an operation to remove their adrenal glands--the maker of cortisol. They must carry around an adrenal crisis letter explaining their condition with them at all times. This will notify medical professionals about the care that is required for us. Often, a person in adrenal crisis can not think clearly or advocate for themselves. Adrenal insufficiency or adrenal crisis is very serious. It requires a trip to the emergency room for immediate care.

Thanks to you, Robin, for sharing this information on your 365 Days with Cushing's blog. We wish you the best for your upcoming bilateral adrenalectomy (BLA).

~Melissa

COOL DIAGRAM & DOCTORS SHARE WHAT THEY KNOW WITH PATIENTS

Hi everyone.

I have been doing a lot of research online, and I want to share some of my findings. With a disease this complex, there is always more to learn.

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National Adrenal Disease Foundation has the best diagram that I have seen to explain the relationship between the pituitary and the adrenal glands.

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The Swedish Neuroendocrine Institute's Pituitary Center in Seattle, Washington has held several conferences recently that are particularly important to pituitary patients. I applaud their efforts, and I am thrilled that they have posted videos of the conferences' presentations online. These very professional videos show the speaker at the podium in a smaller screen and the presentation up close, enabling us to read the "slides" as they present them. WOW--see the speaker and the screen! This makes my day!

It is also refreshing to finally listen in, like a fly on the wall, to many different physicians talking about a disease you have. We typically only see our ONE doctor about our disease. Seeing multiple doctors with in depth knowledge wraps the patients in warmth and comfort like a warm blanket. We need that.

While patients, family, and friends are obvious beneficiaries of these efforts, the real change in medical care will come when physicians see these videos. General practitioners, internal medicine, and ob/gyn doctors often see Cushing's patients first, and many don't realize what they are seeing.  Many patients walk first into their local doctors, who may only see an occasional pituitary patient, for help. Unfortunately, these local doctors are often confused about testing, diagnosis, and especially treatment plans, which is not too hard to understand since they only read about Cushing's in one "rare disease" chapter during medical school. Therefore, this online effort will give doctors a chance to learn from experts, and this will undoubtedly improve the road for pituitary patients.

I want to thank the SNIPC for sharing this helpful information with all of us.


A Patient's Road Map to the World of Pituitary Disorders, 2010.

Pituitary Symposium (Patient Presentations), 2009

Seattle Pituitary Center Patient Education Day, 2009

Physician Conference: Advances in Cushing's, 2009

You will find direct links to these presentations, as well as many important others, on this link.


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That's all for now. See you next time.
~Melissa

CUSHIES SET THE RECORD STRAIGHT: Patients Become the Experts without the MD

Patients know more than most doctors do about Cushing's.

I was tickled pink to find this Google Knol page on Cushing's Disease/Syndrome and related endocrine disorders.

It is fantastic.  Why?  It is written by Robin from the Cushing's message boards, with help from the tenacious MaryO.

After testing for Cushing's for over 3 years, I learned a lot from the information posted on that page.  The best part is that everything is in one place, with lovely links to medical literature and diagrams that spell it all out so clearly. Essential for our routine tete a tetes with our dear, sweet endocrinologists.

In addition, I want to draw your attention to a new blog that Robin has created to show how Cushing's affects her life every day.  I bet you will find Robin's 365 Days with Cushing's Disease blog insightful.

I appreciate all of your inventive work, Robin and Mary.  Thank you again for everything.

~Melissa

Cushing's Awareness Month: What People Need to Know

April 8th is Harvey Cushing's birthday. I pay hommage to the good doctor here, so I want to move on to my latest finds.

While I didn't get a chance to post here about Cushing's Awareness Day, I set the facebook world on fire with multiple posts to my 200 friends that day.

* This disease is so underdiagnosed and testing is so complicated, we should get a whole month!!

* Did you know that 40% of the tumors causing pituitary Cushing's do not show up on high resolution brain MRIs?

* Did you know that there is no one test that determines the presence of Cushing's disease? Did you know that doctors want to see many high cortisol values in many different tests (urine, saliva, blood) that are often 3 to 4 times the upper limit of the normal range? Plus, doctors think that a high test value is 'lab error' and often ask for more testing of the test that already showed an abnormal value.

* Did you know that countless patients who do not meet these extremely high diagnosis protocals are told to go home, diet, exercise, stay off the internet, and stop wishing a disease onto themselves?

* Did you know that nearly all these patients do indeed have a neuroendocrine disease, get treatment years and years after the onset of symptoms, and they never hear an apology or receive any sympathy from those naysaying doctors?

* Did you know that Cushing's patients are often isolated from friends and family, because most think patients are just fat, lazy complainers?

* Did you know that many Cushing's patients survive this debilitating disease mostly by relying on friends made through online message
boards? Thank you, MaryO, for creating and maintaining Cushing's Help & Support, a place that so many of us can call home.

* Can you imagine being sick with a terrible disease and being told that, essentially, it is your fault? We go home wondering why doctors think we have the power to change our body's malfunctioning parts. Can you imagining living with this nagging thought from medical professionals for over 1,000 days? I began my testing specifically for Cushing's over three years ago. I am still sick, and I am facing additional surgeries to cure my reoccurence of Cushing's disease.

* Many brave Cushing's souls shared their humiliation and frustration regarding symptoms, testing, doctors, and surgeries in radio interviews in hopes of helping someone who hears themselves in their stories. You can download these interviews for free on iTunes.

* 80% of The Cushing's patients are women. This disease causes unexplained weight gain, central obesity often with a buffalo hump at the base of the neckmenstrual irregularities, infertility, mood swings, body aches, depression, headaches, diabetes, high blood pressure, extreme fatigue, muscle weakness, and osteoporosis.

* Not all doctors were A students in medical school. Many were B, C and D students. In 2010, do you really trust that your doctor is an expert in every disease out there? Beware. Research. Self-advocate. Get smarter. Get additional opinions.

* Scientists are learning that Cushing's can be genetic. Jackie, a member of our message boards, was featured on the show Mystery Diagnosis, where she discussed the diagnosis of her daughter Sam. Since then, Sam's sister Jordan was diagnosed with Cushing's. Later at the NIH, the gene (P...DE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Read more on Cushie.info.

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For those who are just researching Cushing's, I'd like to point you to one of my favorite posts on this blog: Tips to Steady your Feet & Diagnosed Quickly. Read it. Reread it. Remember it. Diagnosis is difficult. Living with this disease is more difficult. Make sure you muster up enough fight in you to save your own life.

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I recently found some very helpful information from the Seattle Neuroscience Institute's Pituitary Center. Dr. Ludlum discusses the basics of Cushing's, as well as the difficulties Cushing's patients face if the tumor is not completely removed in the 1st pituitary surgery. "When the 1st surgery is unsuccessful, Cushing's patients ultimately trade one disease for another."

You can see several videos describing the pituitary gland and Cushing's straight from the good doctor.

Dr. Mark Mayberg works alongside Dr. Ludlam and shares one of the best drawings I've seen to describe transsphenoidal surgery, the surgery commonly used to remove pituitary tumors.

Dr. Ludlum has published several Cushing's-related articles.

And for the Cushing's segment that led to the subtitle of this blog, I share Kate's story with you. Kate is a close friend and an inspiration to all of us with Cushing's. Kate is still fighting to combat the damage that years of excessive cortisol production has done to her body. She is a fighter, and she will win, like we all will. And in her famous words, Kate has taught me, and others, this keep word: ONWARD.

What would you say YES to if you weren't always saying NO?

Late last night, when we usually head to sleep due to the exhaustion of our days, my husband went to HBO on Demand unannounced and selected a movie. No discussion. No hesitation. Not like him at all.  We forewent the usual pre-movie debate that ends with us not watching any move at all. He chose, and we watched, Yes Man.

Jim Carrey stars as Carl Allen, a guy whose life is going nowhere—the operative word being “no”—until he signs up for a self-help program based on one simple covenant: say yes to everything…and anything. Unleashing the power of “YES” begins to transform Carl’s life in amazing and unexpected ways.

What would you say YES to if you weren't always saying NO? 

Not only am I so unexpectedly moved by this simple notion, but I felt compelled to share this new 'attitude' with my fellow Cushies who struggle each day with all the NOs that life with Cushing's has thrown us--physical and emotional limitations that make us wonder how we will get ourselves through each passing day, and how we will ever evade the guilt we feel for dragging our husbands and children through our misery.

I don't like the life I've settled for in the past few years.

I don't like the overbearing limitations that I feel have been placed upon me, as I struggle to navigate through life among family, friends and a medical community who don't take this rare disease seriously or take the time to understand it.

I don't like the way this disease has changed the person I've always thought I could be.

I will use the dawning of this new decade to stop letting Cushing's control my life more than it already has. I have to continue to live and say yes to life in the face of this terrible and debilitating disease.
   

I want to feel more in control of what happens to me. I can not let this disease define me. It will always be a part of who I am, but it is not all that I am or all that I will become.

It may sound silly to finally GET IT all from watching a movie. After all, I am really not even a Jim Carrey fan (well, besides Liar Liar and Bruce Almighty). Maybe that is the genius of it all, isn't it? I said YES to a movie that taught me how to say YES to life.

I don't know exactly how good I'll be at this--as I face the uncertainty and ‘unfairness’ of a second pituitary brain surgery and may even another surgery to remove the ultimate cortisol culprits (both adrenal glands  in a BLA).  I will try. 


As I try all this time to find my way back to good health and not lose myself to the life this disease forces on me as well as alllllll the other Cushies, I realize I actually have more command over what happens to me than I thought.  That concept--while difficult to self-cloak—will lead me out of the darkness of disease and into the light of possibility and opportunity. And I'll finally learn that this disease has made me a better person that I ever thought I could or would be.

And don’t we all need a little more of that in our days?

Wishing you and yours a good week, a good month, and a good year.

~Moxie Melissa

HERSTORY: Seeing Yourself in a New Way

From the bitterness of disease, man learns the sweetness of health.
       - Catalan Proverb 

I am preparing a new patient packet for my new endocrinologist.  She is located only 2 miles away, and she has been vetted by three other Cushies in the area.  So, I sit here at 3 am gathering my photos, lab results, letters, imaging reports. I decided to rework my photo summary.

I always find the process of summarizing my life in photos very discombobulating.  I see images of myself, and I wonder where that person went.  It makes me very sad.  I see the weight pile on, especially during the 2000s, and it is hard to distinguish the person I am from the body that traps me.  I find that it is not as much about the weight that I've gained and my drastic change in appearance--as evidenced clearly in these photos--but it is the life that has slipped away over the years as time progressed and I became more sick. I feel like a remnant of my old self.  I am hoping that soon, I'll be able to rejoin the trajectory of the exciting life I was building before Cushing's struck my life with such a vengence. Of course, I know that while detoured, my life will soon snap back into the part of my trajectory that was meant to be.  Lucky for me, I will be bringing my husband and miracle baby along for the ride. 

~moxie melissa

To make my photo summary, I used Google Picasa.  It is very easy.  

1. select the photos you want to use in a collage
2. upload them into a new album and name it 2010 Cushing's collage so you can find it later
3. one by one, open each photo. 
4. crop each photo to include your face from the top of the head to the bottom of the chin. this will make all the photos look uniform as well as focusing on the drastic changes of your face.
5. place the photos in chronological order by dragging and dropping them into the right order.
6. hit the collage button at the bottom toolbar, 
7. select the type of collage, then same size photos.
8. select create collage.  
9. eliminate any distracting colors by making the entire collage black and white. There is a button on the left panel.
10. select the width between the photos and background color. I like a small width with a black background. I think it makes the photos pop.
11. Add text for the dates above each photo.

• put your cursor on the first photo in the college. click on top of the photo.
• go to the icons on the left panel, choose the big T for text, type the year. 
• use your cursor to reposition each text box to touch the top of each photo in the middle, so it would all look uniform. Just drag and drop. 
• Repeat until you have a box for every photo. 

HOW WOULD IT FEEL TO HAVE ADDISON'S: Wondering about life after a BLA

I have mentioned that I am facing a Cushing's reoccurrence. I have to make the difficult decision: try a second pituitary surgery or go straight to BLA, or bilateral adrenalectomy.

Fellow Cushie Gina posted Living with Addison's Disease: An Owner's Manual for Individuals with this Disease, and I wanted to share it. You may also download the owner's manual in pdf format, too.

I haven't read this yet, but I've downloaded it on my iPhone and plan to read it all! I will return and post about how this compares to the patients' experiences we read about on the Cushing's Help and Support message boards. Knowing what I know about Gina, I bet it will be a good read.

~melissa

WHY CUSHING'S MAY NOT BE AS RARE AS THEY THOUGHT: Check your Cookware and Your Chemical Neighbors

I've had this post percolating in my Draft box for a while. I was prompted to post it immediately because of a post I saw tonight on the Cushing's Help and Support message board: Cushing's is rare, eh?. CJS noted that many people in her small town in Canada were being tested for Cushing's and/or friends and family members had pituitary tumors present.

In response to that post, I want to share some other information that I found quite alarming, as I know you will, too.

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It all started with a simple internet search for new pots and pans. Ours had scratches at the bottom of them for some time, and since we were using our old bachelor/bachelorette pots and pans, we decided to buy us some new ones. Like many purchases before, we decided to research our 'green' alternatives. We wanted Le Creuset, France's best cookware, but we were trying to find a less expensive alternative. My husband is a consumer reports kinda buyer, so I put him on the job to read through all the muckety muck and present the choices to me.

My heart came to a stop. The reason that I believe Cushing's is much more common than the medical community can fathom is that the source is as ubiquitous as air. Specifically, that means that there are health dangers lurking in our home, and I purport that the cookware in our kitchens may have something to do with it. More specifically, communities where these chemicals are produced may have a higher prevalence of pituitary tumors, too.



I read the sales pitch for Mercola cookware on a site my husband suggested for me. It cited its sources, and I encourage you to read through them.

What Hidden Health Hazards Lurk in Your Cookware Cabinet?

Teflon is the most popular cookware in America. So what's wrong with it?

Well, for starters, teflon-coated aluminum contains perfluorooctanoic acid (PFOA), a synthetic chemical used in its production, creating its soap-like slipperiness and non-stick finish. PFOA has become very controversial because of health dangers linked to it.

• In April of 2006, multiple class action lawsuits were filed against DuPont representing consumers in twenty states and the District of Columbia. DuPont was charged with exposing millions of Americans to health risks from pans containing PFOA. (And that DuPont knew of the risks but failed to disclose them.) 1

Get rid of that Teflon and other potentially dangerous cookware today!

• In May 2006, DuPont said it received a subpoena from the U.S. Justice Department's Environmental Crimes Section to turn over documents about PFOA safety. This came just a month after DuPont settled a lawsuit -- with a fine of $10.25 million -- by the Environmental Protection Agency alleging that DuPont hid health data about PFOA for twenty years. 2,3

• In March 2006, a scientific advisory panel to the Environmental Protection Agency (EPA) advised that PFOA be labeled a "likely carcinogen".4 Manufacturers are to phase out 95 percent of production by 2010, and totally by 2015. It is important to note that this is a voluntary reduction by manufacturers.

Yet, despite mounting evidence, DuPont still claims that PFOA is safe ...

Just How Dangerous IS PFOA?

In animal studies, PFOA posed health hazards like:

• Serious changes in organs including the brain, prostate, liver, thymus, and kidneys, showing toxicity.

• Death of several rat pups that were exposed to PFOA.

• Changes in the pituitary in female rats, at all doses. The pituitary controls growth, reproduction, and many metabolic functions. Changes in the size of the pituitary are considered an indication of toxicity.

• PFOA has been associated with tumors in at least four different organs in animal tests, and has been implicated in an increase in prostate cancer in PFOA plant workers. 5

My Concern: You Could Be Endangering Your Family and Pets Just by Cooking with Teflon
In studies of heated non-stick pans on conventional stove tops commissioned by the consumer watchdog organization Environmental Working Group, it only took 2-5 minutes to reach temperatures producing dangerous toxins. The coating begins to break down and release toxins into the air at only 446 degrees. 6

But wait! It doesn't stop here. At 680 degrees (3 to 5 minutes), non-stick pans release at least six toxic gasses, including two carcinogens, two global pollutants and MFA, a chemical deadly to humans at low doses.7 The vapors from using these pans with high heat also caused instant death to pet birds.

I don't want you to make yourself, your family or your pets "canaries in the coal mine" with hazardous cookware!
I'm afraid the "canary in the coal mine" is not a myth. In cases of "Teflon toxicosis", the lungs of exposed birds hemorrhage and fill with fluid, leading to what must be an agonizing death from suffocation. Is it such a stretch to wonder what these fumes could be doing to you and your children?

Even DuPont acknowledges that the fumes can make you sick -- they call it "polymer fume fever". They list the symptoms as: fever between 100 and 104 degrees, chest tightness, shortness of breath, headache, cough, chills, and sore throat, based on a survey of workers who complained of the illness. 8

Although this type of cookware is most widely known by the brand name Teflon, there are many other nonstick brand names that contain this toxic coating, including: Silverstone, Fluron, Supra, Excalibur, Greblon, Xylon, Duracote, Resistal, Autograph and T-Fal, to name just a few.

I researched more online, and I found Environmental Working Group, a non-profit research organization based in Washington, DC that uses the power of information to protect human health and the environment.

Here is one EWG article from January 2005 entitled, EWG Assessment of EPA Draft Human Health Risk Assessment for the Teflon Chemical PFOA.

Pituitary gland damage. EPA scientists determined that the Teflon chemical damages the pituitary gland — the master gland of the body controlling a host of critical life functions (EPA 2002; York 2002). In its new assessment EPA has chosen to ignore this important potential health impact, even as it admits that it is statistically significant, because scientists do not fully understand why the effects peak in the middle instead of the top end of the dosing range.

I found the Environmental Working Group's article entitled, PFCs: Global Contaminants: DuPont’s Spin About PFOA.

DuPont emphasizes that the liver is the most important target organ for PFOA toxicity. PFOA causes toxicity to virtually every organ or system tested, including the brain, pituitary, adrenal gland, thyroid, ovary, male reproductive tract, immune system and kidney. PFOA also causes mammary, testicular, pancreatic and liver tumors. Effects on the ovary, pituitary, kidney, spleen and seminal vesicles were affected by PFOA at or below doses where liver effects were observed.

I found the Environmental Working Group's article from May 2008 entitled, Major Study of Teflon Chemical in People Suggests Harm To Immune System, Liver, Thyroid.

Thyroid damage: Higher blood PFOA levels are associated with changes in thyroid hormone levels. Thyroid hormone is critical for normal growth and development; the developing brain of a child is particularly vulnerable to damage from thyroid hormone changes.

I am horrified about this. With all we hear in the news, why can't I remember ever seeing this on my TV?

As a geographer and a Cushie, I am interested in partnering with anyone who wants to do further research on this topic. As a gal who grew up in Houston within 20 miles of all those petrochemical plants, I am interested to see how big business may have affected all of us. In fact, wikipedia lists these as DuPont's locations:

Locations
DuPont's corporate headquarters are located in Wilmington, Delaware. The company’s manufacturing, processing, marketing and research and development facilities, as well as regional purchasing offices and distribution centers are located throughout the world.[1] Major manufacturing sites include the Spruance plant near Richmond, Virginia (currently the company's largest plant), the Bayport plant near Houston (this is near me), the Mechelen site in Belgium, and the Changshu site in China.[8]

In this article in the Environmental Health Program with the National Institutes of Health (NIH):

"In a recent article, Tillett (2007) reported on research by the University of Pennsylvania NIEHS (National Institute of Environmental Health Sciences) Center of Excellence in Environmental Toxicology (CEET). CEET deputy director Edward Emmett described analyses of perfluorooctaonic acid (PFOA) in blood serum collected during mid-2004 from residents of towns near DuPont’s Teflon production facility in Parkersburg, West Virginia. Results of the analyses, which identified PFOA levels “60–75 times higher than in the general population,” were presented at a community meeting in October 2005, and “[DuPont] began offering bottled water to all residents being serviced in the Little Hocking Water District within days” of the meeting (Tillett 2007)."

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After all this, I just didn't want to do anything to jeopardize my health any further. We saved up then spent $400 on 6 pieces of cookware: a few skillets, a few roasting pans, a dutch oven, and a few others at a Le Creuset outlet. I have never looked back. Every time I use them, I think about how I may be saving the lives of my sweet daughter and my future grand babies with all the meals and treats I will prepare in those pots.

Plus, I look forward to collecting Le Creuset cookware in beautiful colors. I will pass these on to my family. And like all good heirlooms, these will have an important story behind them.

~moxie melissa


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Further reading:

https://www.organicconsumers.org/news/dupont-deception-and-pfoas-danger-public

SUSPICIOUS MINDS: The King of Rock & Roll had Cushing's?

What if we could sing this to our doctors:

"Why can't you see
What you're doing to me
When you don't believe a word I say."
~ Elvis' Suspicious Minds


In an article release today, Elvis Presley's personal physician details the medical health of the legendary rock star. Up to this point, Dr. Nick was held accountable for the King's death, even losing his medical license in Tennessee for the over-prescription of drugs that led to Elvis' death.

I read the article with a fan's fascination. I was struck by the simple word included in the article: Cushing's.

Perhaps Elvis had what I have: Cushing's disease.

The article mentions Cushing's syndrome from excess steroid usage. However, in general, the symptoms Elvis sought to medicate heavily are things I have wished someone could help me with. Perhaps Elvis had Cushing's disease as an underlying cause to all of his symptoms? The article says Elvis' hospital test results showed Cushing's syndrome. What if it was the other way around? Perhaps Elvis had severe pain from Cushing's disease (pituitary tumor could be the cause of the eye pain), and the docs gave him additional steroids to help the symptom of pain. It is possible!

He couldn't fall asleep at night.
He gained weight and lose weight.
He was irritable and impatient and volatile (at times).
He had headaches and eye pain.
He had to stop what he was doing and sit down to take a break.
He had diarrhea and colon problems.

And the list goes on and on.

Elvis was found dead at the toilet after vomiting. Perhaps he vomited from low blood pressure caused by low cortisol. Perhaps adrenal insufficiency.

What does it do to our reality if Elvis was not just an eccentric celebrity with money? What if he was a sick man, miserable and in pain, trying to keep up with a daily schedule that is maxxed out beyond what any of us with Cushing's (or without Cushing's) could imagine??

If you are a Cushing's patient, did you find yourself nodding in understanding when reading this story??

Elvis had the money and the means. He got the prescriptions that he felt he needed. He was treating the symptoms, not the disease. Most physicians didn't know any better. Most physicians don't know any better now.

The photos include in the article show an Elvis whose weight came on fast and suddently. I remember the Elvis of the 70s, and I remember being among the millions that wondered how that handsome legend's appearance could change so drastically.

Stars-doctor-finally-reveals-true-madness of final days.

This makes me so sad. I hope the medical community wakes up and figures out how to treat this disease. What other promising lives are lost too early to this RARE disease called Cushing's??


-Melissa

P.S. Remember, celebrities do not always disclose their medical struggles to the public. This is a relatively new phenom. Remember my post about JFK having Addison's?

I'M JUST GONNA SAY IT

I did midnight testing for Cushing's on December 8 and 9, 2009.

My midnight cortisol serum results were high. Both days.

Normal level is 0. Mine were 5.93 and 6.1. WAY TOO HIGH.

This is a bad sign that my Cushing's may be reoccurring.

HIGH. Just like before surgery.
HIGH. My hopes for my family's return to normalcy.
HIGH. My anxiety over how long it will take for me to be the person, wife and mother that I want to be, the one that I know I am inside.

I am working on setting up a testing schedule with my new endocrinologist in my new town. I'm reconstructing the story of my life in lab results, MRI reports, and emails to doctors. This stack is as big as a ream of paper. That's 500 sheets! More than three years of my life are caught up in those papers. How much more time will Cushing's take from me?

I am sure the testing protocol will include continued cortisol testing, adrenal scans, lung scans, perhaps even another IPSS. So many more tubes of blood, urine samples, lab trips, doctor visits, questions and half answers. I'm not looking forward to it.

Onward.
~Melissa

Test Results, Schmest Schresults

Well, I finally got my greedy little hands on my test results. January 6, 2010. My tests were run December 7-10, 2009.

I can't organize my thoughts well enough to post a complete summary, so I'll let it all percolate in my cranium and see if something worthwhile falls out.

Check back soon!
Moxie Melissa

Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy

I found this article. A little dated but shows that some Texas endocrinologists recognize early to mild Cushing's. Yahoo for the DFW Cushies. Good luck to you.

NOTE: This post is not recommended as medical advice. Please visit your doctors on your own accord, and make your personal health decisions for yourself. Never substitute my judgment for your own.

~Moxie Melissa


Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy

Medical News Today
Patients With Mild Cushing Syndrome May Benefit From Adrenalectomy
09 Dec 2007

Researchers at UT Southwestern Medical Center have found that patients with a mild form of Cushing syndrome, a metabolic disorder caused by adrenal tumors, demonstrate substantial clinical improvement after adrenalectomy.

The study, appearing in the December issue of the journal Surgery, is the largest series of surgical outcomes reported in patients with subclinical Cushing syndrome to date, said Dr. Richard Auchus, associate professor of internal medicine at UT Southwestern and co-author of the study.

"We don't have enough data to come out with a definitive statement that everyone with an adrenal tumor and mild cortisol excess should have the adrenal tumor removed," Dr. Auchus said. "We can say, however, that there are many people with large adrenal tumors who, while not meeting classical criteria for Cushing syndrome, nonetheless suffer from the hormonal disorder and will benefit from surgery."

Cushing syndrome occurs when the body's tissues are exposed to excessive levels of cortisol, a hormone which helps regulate glucose and fat metabolism. Cushing syndrome is caused by tumors of the pituitary or adrenal glands making too much hormone for long periods of time.

Symptoms vary, but most people with Cushing's, also called hypercortisolism, have upper body obesity with increased fat around the face and neck. Diabetes, hypertension, thin skin, muscle weakness, bruises and fatigue are also common.

Though the more overt Cushing's affects about 1 in every 5,000 to 10,000 people, milder, or subclinical, Cushing syndrome may affect as many as 1 in every 1,000 people in the population, Dr. Auchus said.

In the current study, Dr. Auchus' research group analyzed the records of 24 patients who underwent adrenalectomy at UT Southwestern between 2003 and 2006 because of abnormally high cortisol production. Of the 24 patients, nine met the researchers' definition of subclinical Cushing syndrome.

Dr. Auchus said the results were telling. Diabetes and hypertension improved considerably in most affected patients after adrenalectomy. In addition, all eight patients who reported easy bruising before surgery noted resolution of the problem, and seven of the nine patients lost weight. Fat accumulation around the neck disappeared and muscle weakness improved, often markedly.

"We cannot promise everybody the same results," Dr. Auchus said, "but we found that adrenalectomy can dramatically help some patients."

Dr. Auchus said there are many caveats to their findings, chief among them that the study was not random.

"It was a very select group," Dr. Auchus said. "Because they had certain clinical symptoms, we offered them surgery.

"We now have a handful of additional people who have biochemical indications of subclinical Cushing syndrome, but we haven't recommended surgery because they don't have hypertension, obesity or easy bruising. We're continuing to repeat their blood and urine tests for cortisol function over time."

The classic manifestations of Cushing syndrome, such as purple stretch marks and paper-thin skin, occur only in severe cases. Patients with overt Cushing syndrome are generally diagnosed after a 24-hour urine collection for cortisol. Levels higher than 50 to 100 micrograms a day suggest Cushing syndrome.

It is more difficult to diagnose subclinical Cushing syndrome because patients' symptoms are non-specific, such as fatigue, obesity and hypertension. Using the traditional diagnostic tests, patients with subclinical Cushing syndrome rarely have enough cortisol in their urine to raise concern.

"The cutoff values are intentionally set high so that we minimize the false positives," Dr. Auchus said. "But when you do that, you miss those with early or subclinical Cushing."

Dr. Fiemu Nwariaku, associate professor of GI/endocrine surgery and vice chairman of surgery, said the message to physicians is to maintain a high level of suspicion for hypercortisolism in patients whose biochemical tests are not completely normal and repeat biochemical studies periodically.

"Unless a patient's test results are clearly negative, they should probably get more complete testing," said Dr. Nwariaku, senior author of the study.

The researchers next plan to organize a multicenter trial to define better subclinical Cushing syndrome and guide recommendations for diagnosis and therapy. They also plan to study the genetic mechanisms of why some people suffer the manifestations of mild hypercortisolism, which others don't.

Other UT Southwestern researchers involved in the study were lead author Dr. Ian C. Mitchell, surgery resident; Dr. Kavita Juneja, internal medicine resident; Dr. Alice Y. Chang, instructor of internal medicine; Dr. Shelby A. Holt, assistant professor of surgery; and Dr. William H. Snyder, professor of surgery.

Visit http://www.utsouthwestern.org/patientcare/medicalservices/endocrine to learn more about UT Southwestern's clinical services in endocrinology.

UT Southwestern Medical Center
5323 Harry Hines Blvd.
Dallas, TX 75390-9060
United States
http://www.utsouthwestern.edu

Article URL: http://www.medicalnewstoday.com/articles/91136.php

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REOCCURRENCE: Hard to know for sure

I wanted to take a minute to update y'all on my progress post op. There has been so much that happened.

First off, the best thing I can say is that I am happy that I am 6 months post-op. I survived 180 days of uncertainty. Many days, I didn't think I could do it. It PAINED me more than you could ever know for me to move through my days and nights, not knowing what will happen to me (and my family), and not being able to plan. I broke a lot of plans, I missed a few birthdays, and I didn't DO as I normally DO. But I tried. And for 2009, that has to be good enough.

I thank my husband, in-laws, and my mom and dad for helping me with the baby and even taking pretty good care of me.

You always know that I tell patients, regardless of their disease(s) but especially Cushies, to partner with their doctors in their health care. That's good to say and all, but I have an example today, so I wanted to share it with you. Hopefully, it will demonstrate HOW I communicate with my doctors (descriptive, detailed). I have been lucky to surround myself with a knowledgable and responsive and caring team of doctors (and their staff!), and I hope the very same for you.

Here is the email that I sent my endocrinologists in two different towns in an effort to keep them in the loop as far as my testing and planning. It serves as a quick recap.

Dear Drs. XX and XY,

Per our discussions at my appointments earlier this month, I committed myself to testing for Cushing's last week. I tested from Saturday to Sunday, and Monday to Wednesday. Those results should be on the way to your office by now. I ask that you and your staff keep an eye out for these tests results:

* 2 tests: 24-hour urinary free cortisol (UFC)
* 2 tests: 12am cortisol/ACTH at hospital
* 2 tests: 8am cortisol/ACTH
* 1 test: hemoglobin a1c

Would you please email me a copy of the test results after you review them?* I am sure you can understand my anxiety over these pending results... Could I be cured? Am I still suffering from Cushing's? This disease has turned my life upside, and I am hoping that it is finally over, but I am worried.

I know this may sound drastic, but I have been having several symptoms that make me think that my Cushing's may not be cured. Since my Cushing's is cyclical, the above tests may or may not show high results. These are my symptoms in the past three months:

* cortisol serum at 8am of 18 (20 is considered high post op)
* ACTH plasma at 8am of 29 (30 is considered high post op)
* low IGF-1 again (59, 66) after one normal 145 post op
* high blood pressure (140s/100 at several doc appts)
* high blood sugars (consistently 150 for several months, having never experienced high blood sugars before)
* sleep disturbances (difficulty going to sleep, up all night, waking at 4 am)
* inability to lose weight/fast weight gain in October/November
* more energy than most days
* acid reflux
* pain in my buffalo hump

If these test results are high, I want to work with Dr. "neurosurgeon" to schedule another pituitary surgery by the end of the month/insurance year. That will save me over $2000 because I would have to meet my deductible and maximum out of pocket expenses for my insurance.

My hope is that my hormones are still trying to get back in balance, and these symptoms will soon resolve themselves. However, I am a realist and I want to look at the data and make good decisions going forward.

I appreciate your help in battling Cushing's disease. I hope you can accommodate me as I try to work with all of my doctors and keep track of all of the pertinent information regarding my health*. Ugh. That's a hard job.

Sincerely,

Melissa
DOB: 11/--/19--
...-...-.... cell
http://cushingsmoxie.blogspot.com/

* Please take this as my consent to release these lab results to me, the patient, via email.

DEPRESSION: Are you more than just sad or down?

I was up late on the computer, organizing years of digital photos. While watching TV, I was intrigued by a commercial I saw. It was along the lines of, 'How do you know if your depression is as bad as you think it is? The voices pointed viewers in the direction of an online self-assessment that will determine the severity of depression, if any, and direct you to some help. It only took about 15 minutes to complete the WebMD Depression Health Check.

I found this particularly timely. If you've read this blog before, you might have picked up on my internal battle with depression: do I have it? Why can't I be grateful? How can I help people here if I'm down? etc, etc, etc. My depression symptoms from Cushing's went haywire with post-partum depression and even post-op pituitary surgery.

While taking the assessment, it asks if you are taking medication. I said, yes to taking a sertraline/zoloft generic for over a year without much improvement. It asks if you have any conditions that may worsen depression, AND CUSHING'S WAS LISTED. I couldn't believe my eyes! Somewhere in the medical community, SOMEONE IS MENTIONING AND EVEN RECOGNIZING CUSHING'S! I feel a little validated... even though I bet this is only one way for BigPharma to sink their teeth into us and not let us go. Regardless, I will take any help I can get. I feel completely at a loss as to what to do next to help myself, so I am interested to see what they suggest. In fact, to be helpful, I thought I would share what the final assessment showed, in a report for my doctor and me :)

Date: December 6,2009
Patient Name:

Dear Doctor,

Your patient recently completed the online Depression Health Check Health Check at WebMD. This tool is designed to help your patients become better informed about their conditions and compliant with your prescribed therapy. Full clinical references are provided at the end of this document

Impression
Dx major depressive disorder (MDD)
History
30-39yo female dx MDD >6 mo ago. Currently treating with Rx. Sx STB |||| with Tx.
Medications

* Zoloft (sertraline)

ROS positive

* Depressed mood (DSM major)
* Anhedonia (DSM major)
* Anxiety (DSM minor)
* Difficulty sleeping (DSM minor)
* Difficulty concentrating (DSM minor)
* Feelings of worthlessness or guilt (DSM minor)
* Increased fatigue or loss of energy (DSM minor)
* Weight change (DSM minor)
* Recurrent thoughts of death or suicide (DSM minor)

WebMD Healthcheck

You've been living with depression for some time, now. Unfortunately you haven't found a treatment regimen that works well for you. Perhaps it's time to talk to your doctor.

Ask About Treatment-Resistant Depression
If you have been on at least two different medications over the past six months or longer and you have taken the medication exactly as prescribed, it is possible that your depression could be "treatment resistant." If you think that might be the case for you, talk to your doctor, because treatment-resistant depression requires a different tactic. Sometimes what is thought to be treatment-resistant depression turns out to be bipolar disorder or another medical illness that has gone undiagnosed. Your doctor can help determine whether you need a different treatment plan or further evaluation.

Don't Get Discouraged
There are many options that can help you control your symptoms and take back your life. Trying different combinations of medication, talk therapy, and lifestyle changes may increase the likelihood that you'll achieve remission, which is the ultimate goal.

Give each combination a thorough try before deciding that it's not working for you. Long-term treatment for two years or more may be necessary. Keep a journal to track your symptoms and responses to medications and other therapies, so you can see your progress over time.

Be a Patient Patient
Medications that treat depression do not work overnight. When first started, many of these medications take at least two weeks to build up in your bloodstream to levels at which an effect may be noticed. If your medication is not working after two weeks, your doctor may increase the dosage, add or change to another medication, or do both to help control your symptoms. Talk therapy often is recommended, too.

Do Be Compliant
To make sure your medication is as effective as it can be in as few courses as possible, it's important that you be diligent about following your doctor's instructions. Take the medication in the amount prescribed and at the same time(s) every day. If you have questions about whether you are taking your medication(s) correctly, your doctor or pharmacist can review your treatment instructions with you and make any necessary adjustments that may make it easier for you.
If you work with your doctor and find a successful treatment plan, it is important to stay on that treatment plan for six to 12 months, even if you start to feel better after one month of treatment. Not following your doctors instructions can increase your risk of relapse. Relapse can be common once drug therapy is stopped or if symptoms persist. And two or more episodes of major depression increase the risks of another episode of depression. Talk with your doctor to determine how long you should stay on treatment.

How Others Are Responding to Treatment
Response to depression treatment can be very personal, but sometimes you just need to know you're not alone. See how your treatment response compares with others, like you, who have been diagnosed with depression, are currently treating their depression, and have recently taken this same WebMD Depression Health Check.

You reported that since starting your treatment that your depression symptoms are
slightly worse.

What Others On Prescription Treatment Are Reporting
Much improved (16%)
Slightly improved (40%)
No change (23%)
Slightly worse (13%)
Much worse (8%)

Be Careful With Supplements
Several types of dietary supplements are touted as mood enhancers, including St. John's wort, valerian, lavender, B vitamins, and omega-3 fatty acids, but there is mixed or little evidence about their effectiveness. In some cases, supplements can cause dangerous interactions with prescription medications. Be cautious, and be smart: Tell your doctor about everything that you are taking, even vitamins! Ask your doctor or pharmacist about any supplements.

Pain and Mood
A common occurrence with depression can be chronic pain (pain that persists over a long period of time). Research presented by Harvard Medical School showed that depressed patients have three times the average risk of developing chronic pain. But chronic pain also leads to depression, as the same research also showed that people with chronic pain have three times the average risk of developing anxiety disorders and depression.

Depression and pain are closely connected. One of the reasons researchers believe this connection exists is because two chemicals in the brain -- serotonin and norepinephrine, which brain cells use to communicate -- affect areas of the brain linked to both pain and mood. Just as being depressed may make people feel more intense pain, being in pain all the time may lead to mood swings, immobility, and isolation, further compounding the feelings of depression.
Depression may contribute to the discomfort associated with back pain, chest pain, constipation, diarrhea, dizziness, exhaustion, headaches, joint pain, lightheadedness, muscle pain, nausea, and stomach problems. Because those symptoms occur with many conditions, specifically linking them to depression is a difficult task for doctors.

If pain or depression symptoms persist, you should see your doctor. After a thorough evaluation, your doctor can diagnose the problem and offer treatment, such as prescription medications, physical therapy and/or talk therapy. A study recently published in the Journal of the American Medical Association shows that people with both depression and chronic pain (of the lower back, hip, or knee) significantly decreased their depression, pain severity, and disability if their treatment included 12 weeks of antidepressant therapy, six weeks of a pain self-management program, and six months of continued therapy.

Medical Illness and Depression
Sadness can be a state of mood, and that state could be normal for a person or abnormal, and therefore part of an illness. As an illness, depression is a collection of symptoms and signs that interferes with your normal day-to-day activities. Depression also can occur as part of an underlying bipolar disorder, or secondary to substance use or abuse, certain medications, dementia, or other medical conditions.

Sometimes it is difficult to determine if depression is the result of an existing medical condition -- or the cause of symptoms. A recent paper in the American Journal of Medicine states that depression is increased in most major chronic medical conditions, and explains that treatments for those conditions may increase the risk for depression, too.

Diabetes, Depression, and More
A review of more than a dozen studies reveals that although type 2 diabetes may increase the risk for depression, depression is a much stronger risk factor for type 2 diabetes. Another recent study shows that treating depression improved insulin resistance, which occurs when the body doesn't respond as well to insulin and increases the risks for type 2 diabetes. One link between the two conditions could be cortisol, a hormone related to stress, which is a known risk factor for depression. When stress increases, cortisol is released, and cortisol affects blood sugar metabolism.

Alzheimer's disease also is more likely to develop in people with memory problems who are depressed than it is in people with memory problems who are not depressed, according to a new study published in the journal Neurology.
Other conditions linked to depression, whether by hormones or direct effects on the brain or major body systems, include:

Autoimmune disorders, such as Addison's disease, lupus, and rheumatoid arthritis
Cancer
Coronary heart disease
Fibromyalgia, osteoarthritis and other musculoskeletal conditions
Head injuries
Infections, such as pneumonia, Epstein-Barr virus, HIV, the flu (influenza), and tuberculosis (TB)
Metabolic and hormonal disorders, such as anemia, Cushing's disease, low potassium, low sodium, and thyroid or parathyroid disorders
Neurologic disorders, such as multiple sclerosis or stroke

Some medications that may increase the risk of or symptoms of depression include:

Barbiturates, such as phenobarbital, which is used to treat epilepsy or insomnia
Beta-blockers, such as atenolol or metropolol, used to treat high blood pressure
Chemotherapy agents used for treating cancer
Cholinesterase inhibitors, such as neostigmine or physostigmine, used for treating Alzheimer's disease
Cimetidine (Tagamet), which is used for treating ulcers
Narcotics, such as codeine, hydrocodone, oxycodone, used for treating pain
Steroids, such as prednisone, used for reducing inflammation
Withdrawal from illicit drugs, such as cocaine

Learning More About Depression
You know how depression makes you feel. You've gone through the diagnostic process. You've probably even learned a thing or two about neurotransmitters while dealing with your condition. But you, like many researchers, are probably still curious.

What Causes Depression?
Two neurotransmitters (chemicals that help brain cells communicate) long thought to be involved in mood disorders include serotonin and norepinephrine. A long-standing theory has been that underactive neurotransmissions of these and other brain chemicals cause depression and may be involved in other mood disorders.

Defining Major Depressive Disorder
Since the 1970s, major depressive disorder has been defined by the presence of nine symptoms: sadness, loss of interest or pleasure, feelings of guilt, feelings of worthlessness, trouble concentrating or making decisions, suicidal thoughts, fatigue, abnormal eating patterns, and trouble sleeping.


Depression doesn't have to have such a strong impact on your life. Depression certainly can be a debilitating condition that increases irritability, restlessness, fatigue, and feelings of worthlessness, while decreasing sex drive, energy levels, and sleep. And it can hurt physically by contributing to headaches, back pain, digestive problems, bodily aches, and joint pain. But doctors can help you manage your symptoms. And you can play a large role in managing your condition by staying focused on your lifestyle.

Sometimes treating depression requires you to take a step back and see how far you've come. You won't notice a difference from day to day. If you keep track of your symptoms, such as in a journal or calendar, you'll likely notice improvements month to month. If you do not, please talk to your doctor and make sure you are motivated and willing to give yourself the care you need.


Take Care of Yourself
To reduce your symptoms while following the treatment plan your doctor recommends, be sure to:


1. Reduce Stress. The emotional effects of stress, such as anxiety, panic attacks, and sleep deprivation, may compound the physical symptoms associated with depression, such as headaches, upset stomach, and sexual dysfunction. And having depression may mean you'll feel more stress. Trying stress-reducing techniques like meditation, cognitive behavioral therapy, or yoga may serve a dual purpose. It may help you reduce the stress you feel, and it may reduce the negative effects of stress on your body. If trying to squeeze in a yoga class only increases your stress level, simply sitting comfortably in a quiet room for 15 minutes with eyes closed may let tension and stress have a chance to melt away.


2. Get Moving. We understand that depression may keep you from feeling like exercising. But if you can motivate yourself to do whatever activity you are able, the movement can start to make you feel better. Moving your body triggers the release of endorphins into the body, which are mood-boosting chemicals.
Getting exercise on a regular basis strengthens the heart and muscles, which may help reduce physical symptoms associated with depression, such as pain. Exercise also reduces stress, improves sleep, and wards off anxiety. A win-win all around. And remember, physical activity doesn't have to mean running. Walking, gardening, and playing outside with the kids count as physical activity. Remember to talk to your doctor before beginning an exercise program.

3. Eat Well. The foods you eat may affect your mood. Too much sugar may alter the balance of chemicals in the brain, contributing to mood swings and symptoms of depression. And one recent study potentially links a low level of omega-3 fatty acids with both depression and coronary heart disease. And depression is known to be a risk factor for coronary heart disease in those who do not have heart disease, and it is known to worsen outcomes in those who do have heart disease.
Maintaining a healthy diet may help lower your risks for other health problems. Choose fresh fruits and vegetables, whole grains, low-fat dairy, and poultry or fish, and make sure you eat them in proper portions. Limit highly processed foods, red meats, high-fat dairy products, and sweets. Avoid alcohol and foods containing trans fats.

Because you've been diagnosed with depression, it's especially important to pay close attention to what you eat. Depression may make some people turn to food for comfort and gain weight, whereas others will lose their appetite and lose weight.
If you have excess weight to lose, reducing your body weight could improve your symptoms of depression. A recent study done at the University of Pennsylvania shows that people with symptoms of depression who took part in a 6-month behavioral weight loss program not only lost an average of 8% of their body weight, they also significantly reduced their symptoms of depression. In addition, they improved their glucose and cholesterol levels and reduced their triglyceride level, thereby cutting their risk of heart disease and stroke, and they also significantly reduced their symptoms of depression.

4. Be Aware of Alcohol's Effects. Alcohol dulls symptoms and pain because it depresses the central nervous system. That means it affects chemicals in the brain. For example, alcohol reduces serotonin, which increases symptoms of depression. Alcohol abuse or dependency can be associated with major depressive disorder. Eliminating the intake of alcohol is an important part of your treatment. Avoiding alcohol altogether is best if you are taking prescription medications, as mixing alcohol with medication may result in serious side effects.

5. Find Shoulders to Lean On. Sometimes a good friend with a great ear for listening can help relieve some of the pressure depression brings. Spending time with friends and family members who make you feel good or working one-on-one with a therapist gives you a place to vent.

Beyond family, friends, and your therapist, joining a support group can help you connect with others who are experiencing similar problems. Support groups allow you to share the ups and downs you experience while trying to manage your depression, and may allow you to learn some new coping solutions from others in the group. Check local hospitals as well as state and local chapters of the National Alliance on Mental Health for support groups in your area. Some support groups are online, as well.


The more you know about depression and treatment, the better equipped you'll be to make wise decisions about your health. You answered 10 out of 10 questions correctly, or 100%. HEY, WOW--maybe being smart will make me feel better about myself?! :)



Depression can make you feel pain more intensely, and having chronic pain can make you feel depressed. True or False?
The answer is TRUE.
Depression is not just an emotional condition, it's very much physical, as well. People who are depressed are more likely to experience sleep disturbances, headaches, back pain and continuous dull aches and pain. Although depression can increase a negative response to pain, some of the chemical messengers to the brain for pain and depression are shared, making it possible for the brain to associate depression with pain, and vice versa. In fact, depression and chronic pain have a reciprocal relationship: People with chronic pain experience three times the average risk of developing psychiatric symptoms, including depression, and people living with depression have three times the average risk of developing chronic pain.
A Harvard Medical Center review found chronic pain to be both an emotional and physical condition, resembling depression and affecting mood and behavior and leading to isolation and immobility. Medications are available that alleviate both the mood symptoms and the pain. Eating well, reducing stress, and exercising also help keep pain and other symptoms at bay.


Depression medications may take several weeks to achieve their full effect. True or False?
The answer is TRUE.
Medications prescribed for the treatment of depression do not reduce symptoms overnight. It takes time for the medications to interact with the body, anywhere from four to eight weeks, as the medications increase chemical messengers in the brain. Not all medications interact with individuals the same way: What may work well for one patient may not work well for another. If one medication, taken for eight weeks, does not reduce symptoms of depression, doctors may try increasing dosages or try different medications altogether, again requiring additional weeks before knowing if they work. However, once the right course of treatment is found, depression symptoms can be greatly reduced and depression can go into remission. It's worth the wait.


Depression medication together with talk therapy is usually more effective than either type of treatment alone. True or False?
The answer is TRUE.
The goal of treatment is to put symptoms of depression in remission so that you can do what you enjoy and enjoy what you do. For some people, remission occurs after a course or two of antidepressants. For others, it is achieved with psychotherapy and no medication. For some people who have depression, psychotherapy may be recommended as the initial treatment. An antidepressant medication should be started if psychotherapy doesn't improve symptoms. For those who have severe depressive symptoms when diagnosed, antidepressant medication is recommended as the initial treatment.

At least a dozen studies show that the combination of psychotherapy and antidepressant medication is more effective than either alone, especially for those who have recurring depression or who have had severe depression for more than two years. Regardless of which type of treatment is being used, taking the medication exactly as prescribed and not missing doses is necessary, as are regular follow-up appointments and open, honest communication with the doctor at those appointments.


It doesn't matter if you miss a dose of medication now and then. True or False?
The answer is FALSE.
Antidepressants balance levels of chemicals in the body that regulate mood. There may be a lag before the medications relieve your symptoms. Your doctor's prescribed dosage is meant to work over time to reach the level in your body that will regulate your brain's chemicals. Even if you feel better, do not discontinue your prescribed antidepressant without talking to your doctor. This can result in a relapse of your symptoms or can be associated with symptoms of withdrawal, such as nausea, dizziness, and trouble sleeping. It is important to follow your doctor's medical regimen closely to put depression into remission.


If depression recurs, it is best to treat it with a different medication. True or False?
The answer is FALSE.
If you get your depression symptoms under control, are weaned off the medication by your doctor, and then have a recurrence of depression, many times your doctor may resume the medication that worked previously to manage your symptoms. Of course, the antidepressant you took in the past may have a similar response as you did before; if not, your doctor may consider other treatment options. Because depression tends to run in families, another medication option may be one to which a first-degree relative (mother, father, sister, brother) has had a positive response. Responses to medications often have a genetic component, too.


You can tell if someone is depressed just by looking at them. True or False?
The answer is FALSE.
Many people fear the thought of others knowing that they are depressed, and therefore often do not seek a diagnosis or treatment for their feelings. That is unfortunate because others will not know if you or anyone else is depressed unless you tell them. Although depression is considered to be a medical illness, like arthritis, heart disease, or diabetes, people with depression do not have a physical characteristic that "gives them away." Depression does not make a person have a certain look, nor does it cause any outward signs in the way that, say, arthritis may cause apparent red, swollen joints or a limp.


Once you start feeling better on medication, you can stop taking it. True or False?
The answer is FALSE.
Some patients taking antidepressants may feel so good they assume their depression is in remission and believe they no longer need antidepressants. Patients who abruptly stop taking medications may experience a return of depression symptoms and may also experience symptoms of withdrawal. Researchers examining the effects of abruptly coming off a class of antidepressants called selective serotonin reuptake inhibitors (SSRIs) have found that patients felt serious physical and emotional effects, including flu-like symptoms, vomiting, fatigue, and dizziness. It is important to remain on treatment until your doctor recommends slowly weaning you off of medications. Your doctor will lower dosages over time and phase out the medications slowly, so as not to cause withdrawal symptoms or trigger a relapse of depression.


Depression always causes the same symptoms in everyone. True or False?
The answer is FALSE.
Depression is a common medical illness, associated with biologic changes in neurochemistry in the brain. It is associated with both emotional symptoms (mood changes) and physical symptoms, such as fatigue, headache, abdominal pain, and muscle tension, but not everyone who is diagnosed with depression has all of the symptoms. To diagnose major depression, either depressed mood or a loss of interest/pleasure in activities that were once found to be enjoyable must be present most of the day nearly every day for at least two weeks in a row, in addition to changes in sleep, appetite, weight, psychomotor activity, energy level, or ability to concentrate. Thoughts of worthlessness, guilt, death or suicide may also be present.


If the first medication you try doesn't work, no antidepressant will help. True or False?
The answer is FALSE.
Just because one antidepressant doesn't work for you does not mean that another one won't or that your depression can never be treated. If you've been taking a medication exactly as prescribed -- that is, in the proper dosage and not missing any doses -- for at least eight weeks, then tell your doctor that the prescribed medication doesn't seem to be working. Knowing that people can respond differently to the same medication, your doctor will understand. Your doctor may increase your dosage, prescribe a different medication altogether, or suggest that you add talk therapy (one-on-one counseling or support group), which can improve the effectiveness of antidepressant medication. Once you and your doctor find the right course of treatment for you, your symptoms of depression may subside, and your depression may go into remission.


Most people with depression will have it only once in their lifetime. True or False?
The answer is FALSE.
Major depression is a relapsing, remitting illness in most patients. Following a first episode, there is a greater than 40% rate of recurrence over a two-year period; after two episodes, the risk of recurrence within five years is approximately 75%. Ten percent to 30% of patients treated for a major depressive episode will have an incomplete recovery, with persistent symptoms or dysthymia.

FAQ U: MELISSA'S MAIL BAG

Sue left me a message on my favorite Tips to Get Diagnosed Quickly post. She asks such good questions that I decided to answer them here. Oh, and the babe was sleeping at midnight, so I had time =).

Thanks for the encouragement to be proactive. I have a twenty year old daughter that had a MRI for headaches three months ago. They found an enlarged pituitary gland. Now, three months later it is a recognizable pituitary adenoma 5mm x5mm x8mm. Her doctor keeps reassuring me that it is so tiny that it is probably not the cause of her headaches and that it is no problem that we can't get in to the USC specialist for seven more weeks. I recognize many signs of Cushing's including weight gain in the last six months, new vertical purple stretch marks on her abdomen, complaints of bruises, acne, boils and even an insect bite infected with staph, Also she has constant vaginal yeast infections, a sinus infection diagnosed by the MRI, apathy, and memory problems. My daughter has Asperger Syndrome and she rarely expresses her emotional or physical feelings, so this is somewhat like pieces of a puzzle coming together. Do you or anyone else have advice on waiting to see the so called "best Endocrinologist" as we were referred to by our doc? Do all the endocrinologists mentioned on the site require recommendations from primaries? My PPO does not. Again, thanks for your encouragement to be proactive - when I speak to my daughter's doctor I feel she is trying to assure me it is nothing to worry about. I want to be fully informed and do what is best for my daughter. Thank you for sharing all of your experience so willingly, I am sure you are helping many.

Sue, I'm so glad the words I wrote 18 months ago are helping people still today. I'm sorry your daughter may have Cushing's. No one wants to hear that. This is a big deal. Don't let them minimize it. Be an informed, persistent, and tenacious advocate for your daughter. She is sick and needs your help. Those symptoms sound like Cushing's symptoms. Worry, ok, but pack enough information into your brain that you can nudge them along your way.

One of my favorite posts about the urgency to get treated comes from the former founder of the Pituitary Network Association. I call it, Cardiac Paddles to the Chest .

That pituitary tumor is pretty large. Mine was a microadenoma at only 3 millimeters. A macroadenoma is larger than 10 mm or 1 cm. Both sizes can cause headaches for some patients. Plus, it seems that the pituitary tumors resected during surgery end up larger than the MRI shows.

Do not wait 7 weeks, unless you try all these things:

1. ASK DOCTOR STAFF TO HELP YOU GET AN APPOINTMENT WITH THE SPECIALIST. Ask your doc to call best Endo doc directly for the appt. Staff could try first. Tell them you need their help. Fake apologize for being a worry-wart mom. Go in person, and offer to wait in waiting room until they do it =). Ask that doc 1 fax all clinic notes, labs, and radiology/MRI reports to doc 2 in advance of appt.

2. FIND AN EXPERT. Check these websites for helpful lists of doctors familiar with the treatment of Cushing's. Is there another specialist nearby? Don't put all of your eggs in one doctor basket. Work the system.

* Cushing's Help & Support. On its message boards, we Cushies discuss our favorites under Doctors and Hospitals.

* Pituitary Network Association

* Cushing's Support & Research Foundation

Make an appointment with another doctor if you can get in before 7 wks. Keep other recommended "best endo" appointment. You will feel better for not waiting, and you will arm yourself with more info with a 2nd opinion. Be sure to call your PPO insurance directly to see if doc 2 is in network. Most do not require a referral. Be sure to ask the office staff.

3. TESTING FOR CUSHING'S. Can you tell me what testing your daughter has done for Cushing's? What came back abnormal or high? If no testing besides the MRI was done, ask your referring doc to order some for her while you wait to see the "best endo." Then that doctor can review the results at the first appointment, saving valuable time and giving you a feeling of forward momentum.

Request these tests to diagnose Cushing's
For a good overall assessment of Cushing’s, be sure you leave your doctor's office with:

1) copies of all of your lab results to date;

2) four lab orders for each of the following tests, to test as you see fit, according to your symptoms:

* 24 hour urinary free cortisol (UFCs): normal range is 0-50. diagnostic is over 50.

* midnight salivary cortisol (from your spit): normal range is 0-0.17. diagnostic is 5 and over.

* midnight cortisol serum(from blood draw): normal range is near 0 at this time. suggestive is over 5. diagnostic is 7.5 and over.

* cortisol serum tests (from blood draw). Lab samples must be taken at 8 am and/or 4 pm. If they are not taken at this time, the results do not count.

* random ACTH plasma (from blood draw). Many Cushing's patients see very high levels at 4 am, don't know why. Normal normal range is 5-27. diagnostic is over 48, over 100 really turns the docs on! These lab samples must be handled very carefully to get an accurate reading. I will post a link to the proper handling when I can find one.

In addition, there are many tests that you can ask a doctor to order for an overall hormone assessment. Since the pituitary is the master gland, controlling the release of all hormones in the body, a tumor can cause the malfunction of other hormones produced in other organs.

These tests usually include:

* thyroid panel (TSH, T4, T3)
* pituitary panel (LH, FSH, prolactin, IGF-1 as measured through the liver from growth hormone in the pituitary)
* hormone panel (estradiol, testerosterone, DHEA, etc)
* vitamin B12, vitamin D, ferritin — many Cushies have very low levels of these three. If ferritin is low, it explains hair loss.

Oregon Health and Science Center in Portland, OR shares these suggestions when working with your doctors.

Others may suggest that you ask for other tests. I didn’t feel comfortable asking for specialized tests before I got the basics ones first. I felt that if I had the first battery of tests done and something came back abnormal, then I would ask for others. This approach worked well for me.

4. GET SMARTER. Just like in chess and billiards, winners have several moves in mind before making their current move. Adopt the same concept. Use the wait time to research Cushing's and the next steps. For example, do they recommend an IPSS, which confirms the pituitary as the source of ACTH excess? The test is invasive but proves the tumor needs to come out and it is not just an incidentaloma (real word!). Many patients I know get this test. It is important info for the endo and neurosurgeon, but for you, your daughter, and your peace of mind. My IPSS results were 78 times the normal limit (3 times normal is diagnostic), and this test convinced my neurosurgeon to move quickly.


If I can help, please contact me again. I am trying to make more time for this blog and the people who find me--out in cyberspace. I take my role as advocate seriously.

Peace, joy, and hope to you and your family.
--moxie melissa