OFF THE PRESS

First I’ll give you a brief summary of who I am. I was relocated to Ohio in 2003 by my new employer at the age of 32. In my early 30s my hard work paid off and I was hired as a corporate vice president responsible for all aspects of information security architecture and policy for a national bank. The position is based in Cleveland, Ohio. In layman's terms, My team would work with software developers and network engineers to create a safe and user friendly banking- ecommerce (internet) product offerings. We established how to stop a hacker, track what they did and prosecute accordingly all while meeting federal laws and customer needs.
It is a rapidly changing field that is challenging and great fun.  I had informed my father when I was a little girl in elementary school that I would succeed in the “man's world" of information technology. I kept that promise passed the “impossible" at age 29.  I received a card from my father acknowIedging my success.  I have that card framed as my only proof of dad admitting he was wrong!  In my 20s I did fight with some vague symptoms of fatigue, joint pain, migraines, and a long list of non-specific problems that I attributed to a diagnosis of Hashimoto's thyroiditis 1999 which eventually required a total thyroidectomy in 2002.

 My husband found me unconscious at the foot of our bed, called paramedics and had me transported to an ER where I was treated for a handful of vague complaints and released.  I decided to fix my overdue need for a primary care doctor in Ohio.  I spoke to some neighbors and made an appointment with a local CCF suburban health center.  My primary care physician is a treasure.  As he evaluated my history, my current issues, my blood work results he decided that I was outside of his comfort zone of knowledge. He tried to treat type 2 diabetes, plus my sky rocketing blood pressure, and out-of-sight cholesterol without success. My list of issues was growing.  He referred me to the endocrinology department on "main campus" and my story mentioned above unfolded.  I had morphed into someone that I did not know both
mentally and physically at an astonishing rate.  After seeking medical intervention from the endocrinologists, I was informed that I did not have a metabolic disorder and I followed orders to see a psychiatrist. I was raised to respect others and trust until given a reason not to. The psychiatrist
trusted the lack of a metabolic issue and diagnosed my condition as bipolar 1 disorder.  My family has no history of bipolar disorder but I guess every family starts somewhere, right?  So I began aggressive treatment of an illness I didn't have - which yielded no changes other than major sedation.

I couldn't ignore that nagging feeling that I wasn't on the right path.  My husband tried to adjust to these changes and decided that my "delusions of being really sick" were more than he could handle. (In his shoes I'm not sure I'd make a different choice, looking back.) My boss asked me to take short term disability because I was missing so much work.  My family was falling apart, my employer is upset with my attendance, and I had become someone I didn't know anymore.  To this day I can't figure out why no one ever explored why my physical and mental world turned upside down and stripped me of a 6 figure income in a career I loved, my husband, my financial security, my home, my hobbies and who I was at the core level despite my best fight.  I moved from Ohio to California, where my parents were confronted with the magnitude of the situation.  I was sedated so heavily, I couldn't speak intelligently. They didn't recognize me physically or mentally either.   They made the choice for me to obtain help, which was truly an act of desperation.  They took me to UCSD, which added more questions.

After reading an article about a doctor in L.A. who thinks outside the box, I decided for one last consult.  If he told me that my problem was in my head then I'd check myself into a mental ward somewhere.  When I walked into his office he said to me "WOW. What took you so long?"  I proceeded to pour my heart out to him tears and all.  He told me what he thought my problems were but he'd need the biochemical evidence to back up that suspicion.  Within 8 weeks of that initial visit I had that biochemical data, imaging showing a evidence of a pituitary adenoma and hope to someday find me again and consented to brain surgery.  The operation went forward and I experienced a cerebral spinal fluid leak (CSF), which is a complication that required a second emergency surgery to fix.  

My husband realized that his blind trust in the initial evaluation and diagnosis resulted in the destruction of my trust in our relationship. He made a huge life-altering decision on bad information. I stayed in California for several months and finally returned to my home in Ohio.  My husband and I have been trying to repair our relationship ever since.  We have lost everything financially, physically, and emotionally but our desire to rebuild our relationship is strong. My family, friends, and most significantly I, have lost faith and trust in the medical establishment. This feeling has been compounded as time moves on and I read similar difficult journeys narrated by other pituitary patients.

 As 2008 has rolled around I continue the struggle to establish a reasonable quality of life.  I mourn the end of life as I knew it, try to accept who I am today and work to improve my presently limited abilities to hopefully forge a better future. I can't help but wonder if the diagnosis had been cancer, would my life be the same? Generally most people have seen or at least understand life with cancer. Most people have never even heard of a pituitary gland or are aware of its function. So how can they grasp any physical changes caused by pituitary dysfunction?  After all, that tumor was benign!  (although it was hormone-secreting which is conceptually really out there!)

Would doctors treat me the same as they do today? (Your labs are fine, why do you still think you're sick?)  Would I be treated in the ER with compassion, suffering a week-long migraine, had that tumor been malignant rather than being scolded for seeking drugs?   Would that hospitalization (3 months after having both adrenal glands removed) still be diagnosed as anxiety?  Would I have all the secondary damage to my body that I do today? Would anyone work harder to improve my quality of life if it was understood that treatment for pituitary and endocrine dysfunction can be as bad or worse comparatively (according to my private non-scientific survey)?
  
I will never know the answers to these questions in my case. Hopefully any future pituitary patients won't rhetorically ask similar questions if our (pituitary patients) communication efforts are successful. We hope to successfully narrate and illustrate the difficult journey of pituitary disease to health care professionals, patients, families, neighbors, employers and those unknown people who currently remain a statistical probability.  If only it is/was as simple as "supplement what is missing."

My goal is to try and improve the communication methods between doctors and patients . I am very passionate about this goal.  I am about to start my fifth year on this bumpy road and I’m still hoping to find a doctor to grab the bull by the horns and help me figure out my health as a whole person.

I want to try and help other patients with education and physicians with awareness and understanding of the reality of having a serious medical problem that quietly steals everything from the patient while they search for a diagnosis. 1 in 5 people have pituitary tumors.  Pituitary patients, if diagnosed and treated quickly, are often able to return to a reasonable quality of life. However many patients lose years of their life trying to figure out why they are so sick. For these patients, regaining quality of life is extremely difficult. We have a relatively normal appearance yet our quality of life is terrible.

I have chosen to use my experience for education and awareness.  Education and awareness may help shape the future where litigation pays for silence leaving it in the past.  I hope to change the world one physician and patient at a time, starting in my own backyard.

I hope to spark a thought that is able to reach the inner child inside of people.  The foundation that we are all built upon that is constructed with time, experience, education and observation.  If a fragment of thought can tumble through all of the factors that make us who we are and reach that unbiased thought process maybe it would be easier to identify and understand how to improve the process of communication that seems to be overdue for change. 

I joined the PNA when I was finally diagnosed, and each time I read the struggles of another patient it reminds me of that raw dull pain that I suppress to maintain what little sanity I may have at this point.  I need to try and address the cause of that ache.  I also know I'm not alone in this desire and there are many people working toward the same goal. They present different skills and experience so perhaps if I give my best attributes to a team already in motion, we can all do the things we do best and see some progress toward our common goal.  I would be honored to help the PNA any way I am able to work towards our common goal.

This month we focus the spotlight on the PNA's own Dr. Shereen Ezzat.  He has been an integral part of this organization from the very beginning. Dr. Ezzat is a co-founder and past president of the PNA. He has served as Editor-in-Chief of each of the four editions of the Pituitary Patient Resource Guide. He is now on the PNA's Scientific Advisory Board and is co-Chair of the Board of Governors along with his wife, noted pathologist and Professor Dr. Sylvia Asa.  We are lucky to have their advice and support.

Dr. Ezzat is one of the world's preeminent endocrinologists.  He is a professor of Medicine in the division of Endocrinology and Metabolism at the University of Toronto, and runs the largest pituitary endocrine practice in Canada. He is Head of the Endocrine Oncology Site group, a collaborative effort based at the University Health Network and the Mt. Sinai Hospital. It is dedicated to the study of endocrine tumors.  Dr. Ezzat was born and raised in Canada.  He went to medical school at the University of Manitoba, did his residency at the University of British Columbia in Vancouver, and then completed a fellowship at Cedars-Sinai Medical Center-UCLA in Los Angeles. He is also a Senior Scientist in the Division of Applied Molecular Oncology at the Ontario Cancer Institute (OCI).

While in Los Angeles in 1990, Dr. Ezzat treated an acromegalic named Robert Knutzen.  He confirmed Bob's diagnosis and guided him through transsphenoidal surgery and subsequent hormone replacement therapy.  When Bob and a few other patients decided to create the Acromegaly Network Association in 1992, Dr. Ezzat was immediately enthusiastic and went on to help Bob found the PNA.  According to Bob, "Dr. Ezzat has a remarkable facility for grasping situations and he can translate medicalese into layman's' language very easily.  Yet at the same time the scientific community pays a lot of attention to his very valuable findings.  He is one of those who can build bridges and has an uncanny eye for good relationship building.  Patients are benefitting enormously from the information he gleans from his contacts with other scientists and researchers." Dr. Ezzat is board certified in Internal Medicine, Endocrinology and Metabolism. He has published a great many studies of endocrine issues, including acromegaly, Cushing's disease, prolactinomas, and non-functioning pituitary tumors. The PNA is particularly proud of the study conducted by Dr. Ezzat and others, sponsored by the PNA, on the Prevalence of Pituitary Tumors. This meta-analysis looked at all the previous research on the subject and came up with a conservative estimate that 16.7 % of the population harbors a pituitary tumor.  This new set of facts became the basis for the PNA's "1 in 5" campaign, which promotes pituitary issues by convincing patients, doctors, and society at large that pituitary tumors are not rare, and deserve respect and more research dollars. The PNA is honored to call Dr. Ezzat one of our own.  He is indispensable, both to the organization, and to the pituitary community at large!  We salute him!

By Suzanne Potter, PNA Editor
 

hormone levels tested – and they came out eight times higher than normal. The endocrinologist said Paula might have a microadenoma (prolactinoma) but told her not to worry about it. The endocrinologist completely missed the significance of the tumor, or ignored its significance, and did not prescribe medicine or even order a CT scan or an MRI.

Meanwhile, Paula treated her symptoms, one by one, at various doctors, each of whom failed to pinpoint the actual cause of her troubles: acromegaly. She saw a dermatologist for acne and patches of dry skin. She saw a podiatrist who thought she had bunions and told her to wear men’s shoes (which he kindly offered to make, for a pretty penny).

She saw a dentist to fix gaps in her teeth. She saw a gynecologist to address her menstrual problems. Paula had sleep apnea but didn’t know it. Her new husband knew about her tendency to stop breathing in fits and starts, but he didn’t’ think it was a problem, since she always started breathing again, and didn’t wake up.

She started having trouble swallowing. She couldn’t gulp water at all, because her tongue had thickened. She had arthritis. She later learned that her joints were growing. But she attributed it to all that training. When her husband tried to hold held her hand, it was agony.

Almost three years went by, and still she received no definitive diagnosis.

In December 2005, things went downhill fast. Just before Christmas, Paula was ended up in the emergency room with massive pain between her eyes. It turns out that the “incidental” tumor had hemorrhaged. It had turned into a macroadenoma. Blood tests showed her to be diabetic.

The emergency room in Toronto referred Paula to eminent pituitary endocrinologist Dr. Shereen Ezzat (who, incidentally, is on the PNA’s Scientific Advisory Board). Dr. Ezzat prescribed Sandostatin, which addressed the hemorrhage by shrinking the tumor. Three months of Sandostatin injections stopped the growth.

In April of 2005, Paula had transsphenoidal pituitary neurosurgery, done by Fred Gentilly at Toronto Western Hospital.

Paula says she was terrified about the surgery, but avoided any serious depression.

She read up on acromegaly, but in all the patient accounts, no one seemed to get 100 percent better. Everyone seemed to be living with residual issues. Paula knew one thing: she didn’t want to give up the triathlons. All the fatigue, pain, and weight gain from the tumor affected her performance in triathlons. “I was terrified that I wasn’t going to be able to do what I love doing.”

Paula discovered that the growth hormone produced by the tumor had actually helped her body recover better after a tough race, but the other problems associated with the disease diminished her athletic potential.

She was determined to build it back up. A week after her surgery she was feeling a lot better than she had for a very, very long time. Just 12 days after the surgery, Paula got back on her bicycle. “I was absolutely delirious to get back on the bicycle at the gym.” 14 days post op, she did her first run and promptly got sinusitis and felt run down. But she recovered, and amazingly, eight weeks later she did her first sprint triathlon since the surgery.

Paula is not on medication anymore. She doesn’t have sleep apnea, or diabetes. The soft tissue on her feet even shrank – returning them to normal size. She did the Ironman race once again in July 2007, and knocked 55 minutes off her time. In fact, she almost qualified for the Hawaii world Ironman championships! She did qualify for the world sprint triathlon championships – which will take place in Vancouver, Canada in June 2008. She plans to do the Ironman race in Lake Placid, New York in July in hopes of qualifying for the worlds in Hawaii in October.

The coast is not completely clear, however. Her blood work shows that her growth hormone levels are high. She thinks that a few cells remained behind after her surgery, and wonders if she will have to undergo the operation once again. She says. “I would like to be declared 100 percent clear. I’m tough.”

Paula plans to write a book about her pituitary journey. The proposed title? “No I’m not transgender… I just have big feet!”

By Robert Knutzen

February 2008

One of the greatest disappointments we have experienced over the past 17 years has to do with numbers. I’m referring to the number of patients, tumors and surgeries, plus the cost of care and social services, not to mention the cost and losses to employers, marriages, etc. Our intense interest in numbers stems from one simple fact: all services, care, research, media attention, physicians’ interest and so on are accelerated or slowed down based on the numbers. (Watch the American election races. Numbers are everything!)

We are told that by classifying pituitary patients and their diseases/disorders as rare, the government (and society) is doing patients a favor. After all, members of the research community get a tax break on their work (which obviously makes them happy). However, no one seems to stand up for us, the patients, aside from the PNA. It is remarkable that diseases like HIV/AIDS, breast cancer and others are counted, treated and assigned “importance” or preference based on numbers. The research dollars and treatment options multiply every year. Sympathy, pity (self and otherwise) flow freely and the kind hearted (and blindsided) public and politicians and the “system” lavishes these relatively common and well-known diseases with research, expertise and a never-ending stream of money.

Pituitary disorders, however, are treated with some disdain and skepticism even by so-called experts, who often without a shred of evidence declare pituitary tumors/diseases to be “rare” and almost always benign. This is rubbish and cannot be supported in any scientific arena.

Governmental agencies and a small number of “self-anointed” thought leaders in endocrinology are successfully guiding measly research monies into their own institutions where only their world view is permitted.

The truth is finally being recognized: scientists/researchers are now speaking out on a daily basis about the approximately 60 million Americans, plus 20% of the world’s population that harbor pituitary tumors. The symptoms seem to vary enormously from patient to patient, and in some cases doctors arbitrarily declare that the patient has no symptoms, even when he or she is bedridden from the pain! Deaths occur on a relatively low level while the quality of life is severely compromised. The patients languish in misery while their families, employers and GP’s either disbelieve them completely (after all, the tumors are “benign,” right?), since the patient can still tie his or her shoelaces and urinate on their own. But, the high numbers of pituitary patients are slowly being recognized and included in their view of medicine. Bravo for them and good for us.

We are at the “tipping point” in pituitary medicine. The truth shall set us free! By working together, sticking to the facts as opposed to old wives tales, the true seriousness and cost to all of society will come forth and speak for itself. Finally, I want to say that no, we are not hyping the numbers on behalf of the PNA. We have known what the numbers were since 1934! What has not been known, is the severity of some of the symptoms and the deadly nature of others. We will concede that not all tumors present with obvious symptoms! Yet, every day we are in contact with new patients from Outer Mongolia to Saudi Arabia and 125 countries in-between. This convinces us that an untrained physician’s personal, non-scientific opinion on the seriousness of these diseases will not carry the day! The “good” doctors are winning, patients benefit and the PNA is taking the battle to where it belongs---in your living room, bedroom, GP’s office and workplace. Don’t get in our way! 7000 years is long enough to wait to be recognized, even when standing with your hands raised. Pituitary endocrinology has come a long way since the days of Goliath. It still has a long way to go! Join us, because quality counts. So do the numbers of patients with pituitary diseases, who are in many cases struggling for their lives. Do not roll over, do not play dead! If other diseases/disorders, far less plentiful than pituitary tumors are accorded the attention needed to improve the patient’s lives – then we as pituitary patients have the same rights. We are not second class citizens, we did not bring this upon ourselves, our pain is real and our deaths just as mournful!

    In my 70 years on this earth, I have lived under many varied political systems and therefore many “experimental” health administrations: Nazism in occupied Norway, socialized medicine in Hong Kong and later in Norway, as well as the free and open market system in the United States. On a daily basis, I communicate with patients and doctors with various and sundry stories to tell about their own country’s systems, what works and what doesn’t!

   At the risk of offending, and with sincere apologies to those affected, I don’t think anything works better than the admittedly flawed system in the U.S. But - we are about to squander it in favor of an approach that is untried here, yet known to be a disaster in other areas of the world.

   In a nutshell: Every self-anointed expert politician, uninformed talking head or journalist talks and writes about health care as though more money thrown at the problems will solve the many failures! For those who read and inform themselves and think—the problems are not related to money except peripherally. The fact is, the University of Michigan, Rand Corporation, the Veterans Administration and others collaborated on a series on the quality of health care received by Americans. You may see parts of it on the PNA home page at www. pituitary.org.

   The very short and condensed version is: about 50% of Americans are not receiving the health care they need, deserve, and pay for!!! Furthermore; the difference in care between the “haves” (classified as those with incomes over $50,000) and the “have nots” (with incomes under $15,000) is ONLY about 4%! That, in itself, should wave a huge red flag of concern. If the U.S. has the most, the “best” and the “brightest”, what is missing?

   Only two answers come to mind: (1) lack of a proper, well-grounded medical (and nursing) education, and (2) a shift away from a belief in the hoped-for infallibility of the human mind. No one can read, assimilate, store, retrieve and apply all the medical/technical knowledge raining down on all of us every day. Doctors are inundated with new information, so regrettably the old information and scientific knowledge is crowded out of the way and not easily retrieved when needed.

   The PNA has devoted a great deal of time to studies, research and surveys regarding pituitary/hormonal disorders and tumors (adenomas). It is sad to say that in the minds of most physicians/health care providers, pituitary knowledge is about as scant as that faced by Dr. Robert Costello of the Mayo Clinic more than 70 years ago. Yes, he was largely right, even without the sophisticated diagnostic tools and assays we have today. Even endocrinologists, in too many cases, are unaware of the “long arm” of the pituitary gland and the unimaginable havoc and complications a pituitary malfunction can cause. Those who work with pituitary patients everyday can (and should) testify to that. We’ve been doing this for 17 years, and we still find that the most ardent advocates of pituitary health are us, the pituitary patients. If you have not had acromegaly, or Cushing’s, or hyperprolactinemia, don’t tell us what it feels like! We know how it feels. You can only study, learn and remember.

   Now to the point at hand: The PNA is launching a new Awareness and Education Campaign which should be foremost in everyone’s mind and on top of their to-do list. Help us by putting on some pituitary awareness days at every hospital and university that deals with pituitary/hormonal issues on a regular basis. We need to reach the GP’s, orthopedic surgeons/nurses, nurse practitioners, marriage and family therapists, optometrists, dermatologists, dentists and every other health care provider who first sees the patients! YES---WE ARE ONE IN FIVE.

   Next, we need to reach every organization that cares about health issues - organizations such as the League of Women Voters, human resources management, insurance executives, the pharmaceutical industry, the local PTAs, etc. etc.

   This is where you, all of you, come in! The PNA has been extraordinarily effective in spreading the word all across the world. Patients and doctors from over 100 countries visit the PNA website (www.pituitary.org) every month. We have had well over 11 million hits so far this year!

   ONE: If you are in the medical field, in any way, help arrange meetings/education in your hospital/town/state. Your medical colleagues deserve to learn that there is more to endocrinology than diabetes! Very frankly, so do your regents, governing board and your legislators.

   TWO: If you are a patient, recently diagnosed or of long standing: PUSH, PUSH PUSH. We at the PNA are here to help you, but we cannot do it all! Nor can we do it alone. In other fields of medicine, patients and doctors very often join hands, do some heavy lifting together, and, as if by miracle, problems get solved, knowledge gets disseminated and patients get help! Now, how great is that???

   Finally, THREE: You first need to help us by matching the generous funds given to us for this specific purpose by the Pioneer Fund, via Scott Hamilton, Honorary Chair of our Board of Governors. Any amount will do. We have printed some great brochures, and the NIH has given us others. Use them, but help us defray the cost. As the old saying goes, “We’ve come a long way, Baby,” but we still have a few more miles to go.

   And yes, this applies to you in other countries a well! We know the status of your healthcare and your system and how desperate many of you are for good, honest answers and professional help. We are here, trying to help as best we can: The difference is, with and through us money will work! Education and awareness are still the best medicine!!

   Dr. Louann Brizendine, a neuropsychiatrist at the University of California, San Francisco, founded the Women’s and Teen Girls’ Mood and Hormone Clinic. She has a “gilt-edged” resume which included time at Harvard Medical School and she is a graduate of the Yale University School of Medicine as well as the University of California, Berkeley.

   Dr. Louann Brizendine, a neuropsychiatrist at the University of California, San Francisco, founded the Women’s and Teen Girls’ Mood and Hormone Clinic. She has a “gilt-edged” resume which included time at Harvard Medical School and she is a graduate of the Yale University School of Medicine as well as the University of California, Berkeley.

   Her newest book, “The Female Brain” (Morgan Road Books, $24.95) is a bold forward leap into the great void of “Understanding Women”. Though admittedly controversial in some circles, there is no doubt that Dr. Brizendine covers female topics and territories with knowledge, wit and humor which should be thoroughly satisfying to female pituitary patients and their families and friends. Finally, they’ll find someone who understands - and can put feelings and thoughts into clear-witted stories that explain THEM! Brizendine is right, there is a difference between the male and female mind. As a patient leader/advocate, I have heard many of these stories over and over in years past, but I have always known that my understanding was just that, an understanding or acceptance of, not an experience that I had shared with any female. However, by reading the book, any reasonable male mind will also realize he is dealing with insight which few, if any, males could gain and explain and bring to life with such clarity. The “inside look” at a woman’s mind is powerful, thought provoking, and should, hopefully, allow a woman with the many possible permutations of “mental upheaval” from a severe bout with a pituitary tumor or severe hormonal imbalance find a way out of the jungle and re-integrate herself into family, job and society.

Brizendine’s way of explaining and dealing with sex and sexuality in women and between them and their men is priceless information, indeed. We are proud and pleased to add this to the other great informational books in our PNA Bookstore. It is an absolute “steal” on your way to recovery and good health. She is right: GOOD HEALTH HAS TO INCLUDE GOOD SEXUAL HEALTH. It is unavoidable!

   LIVING WITH A BRAIN TUMOR is the latest book from the brain of one of North America’s “Brainiest Brain” Surgeons. Dr. Peter Black is the Franc D. Ingraham Professor of Neurosurgery at Harvard Medical School and Chair of the Department of Neurosurgery at Brigham and Women’s Hospital and at Children’s Hospital Boston. The book is divided into four distinct sections - each crystal clear and unambiguous.

   “Introduction to Brain Tumors” needs no introduction. It covers many, many types of tumors and is an education in itself. And yes, pituitary tumors are most certainly covered - thoroughly!

   “Living with a Brain Tumor” addresses the emotional impact of the diagnosis on the patients and their families. It offers advice on issues from work, support groups and managing finances. Priceless information.

   “Treatment Options” is a thorough, understandable explanation of the many possibilities offered to patients in a “sequential, logical and thorough” manner. You ask, the book answers!

   Finally: “Recovery” covers just that, Getting your feet back under you, dealing with hurt and pain and issues such as speech therapy and occupational therapy.

   His experience in dealing with over 5,000 patients with brain tumors gives him a unique insight. Even if he is not your surgeon—his is advice worth following.

   This book is an incredible value (soft cover) from OWL Books, Henry Holt and Company, New York. It is just $17.00 in our book store. This is one your Ddctor cannot ignore either.

   There is no doubt: Get books, get smart, get well! This is the best option you have ever tried!
Now available in our Bookstore