OFF THE PRESS

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!

January 2008

Just When I Thought Everything Was Under Control

After 25 MRI’s with the last 10 or so showing no changes, I thought I was past everything to do with my pituitary disease and I could settle in to taking my hormone replacements of synthroid and hydrocortisone on a daily basis and be done with it. I knew I had to be careful in the heat and I wear my Medic Alert bracelet. So, done deal. Until I moved.

But let’s take it a step back and fill in some of the history. In 1989, at the age of 26, I was diagnosed with a pituitary adenoma because my prolactin level was out of sight. This led to successful surgery. The surgeons removed as much of the adenoma as they were able to reach and my endocrinologist and I worked together to find the right levels of hormone replacement. Five years later, a MRI revealed that the adenoma had regrown to a size where surgery was recommended again. Four months after surgery I had 30 treatments of radiation and once again, my endocrinologist and I worked together. With follow-up MRIs and hormone levels checked by my primary doctor, it has been concluded that the adenoma has not changed in 10 years. I haven’t seen an endocrinologist for several years.

This summer my husband relocated and with that comes new doctors, dentists, optometrists, you name it. My new primary doctor ordered blood work and discovered that my total cholesterol has gone up and my triglycerides have shot through the roof. He recommended that I see an endocrinologist for a thorough consultation.

I met with her in October 2007 and a lot of what I had been doing over the years was affirmed. Then she asked, “What about growth hormone?” And I said, “What’s that?” She began to tell me is that only until fairly recently had the link been made between pituitary disease in adults and the need for growth hormone after the demise of one’s pituitary gland. A blood test confirmed that I likely have Adult Growth Hormone Deficiency. Who knew? Gaining weight around my waist is just a genetic trait in my family. Feeling depressed was diagnosed several years ago as clinical depression and was treated. Not sleeping at night is because there’s too much stress in my life. All of these are possible symptoms of AGHD.

I’m in the process of seeing what my health care plan will cover and I am researching all I can about the growth hormone. The lesson I learned? Life isn’t about being in control. Life is set backs, leaps forwards, discoveries and learning. Continuous learning.

The PNA received this e-card over the holidays, and found it to be charming!

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!”

January 2008

On a fairly regular basis the PNA is accused of “making room” for all sorts of hospitals and medical centers on our web site. This is true. Our philosophy has been simple and straightforward:  medical schools give degrees, states issue licenses, and medical boards certify competence. And, of course, medical management at hospitals issue hospital privileges! Who are we, as patients, to second-guess all these medical authorities and balk at some, excluding them while accepting others?

Obviously we know that in the field of cancer treatment (oncology) a voluntary grading system has been instituted, that awards a COE (Center of Excellence) designation to a very small number of centers (21) in the U.S. Having learned, through many painful conversations and e-mails, that the individuals and centers with the skills and dedication needed to be worthy of such a designation in pituitary medicine are few and far between, even in the U.S., and perhaps more so in other countries. Weighing heavily on our reluctance to rock the boat has been stubborn intransigence and perhaps even ignorant opposition to such a designation as Centers of Pituitary Medicine from some quarters.  We encounter objections from within the University/Hospital management circles, particularly with the effort required to create excellence. They seem, to this day, to believe that all hormonal issues are centered on menopause and diabetes. (Ignorance, as we all know, is no excuse).  

The truth is that pituitary medicine, as a part of endocrinology, far outpaces all other types of hormonal medicine/care sought by patients. A survey done in 2007 and a previous effort from the late 90’s conducted by the Endocrine Society bear this out. Simply deduct a few percentage points from thyroid problems, infertility, osteoporosis, obesity, etc., add them to the category of pituitary problems, and you suddenly have a huge need for pituitary medical care. At the PNA, we know the inter-relationship and overlap. Some “graybeards” unfortunately repeat old, outdated data regarding prevalence and incidence of pituitary tumors, only citing tumors, without counting the numerous cysts, lesions and simple trauma to the pituitary gland. And of course they mislead the readers and the general medical community - which ends up denying quality medical care to innumerable patients.   There are at least 60 million pituitary patients in the U.S. alone, and we will not disappear without a tough fight. And all of you, especially the patients I am sure, are with us on this.

You find many stakeholders in the field of pituitary medicine: researchers, pharmaceutical companies, academic physicians and surgeons, society in general, family practitioners, insurance companies, etc.  However, only one stakeholder truly counts:  the patient!  Sadly, he or she truly has to struggle to be heard, recognized and adequately/correctly diagnosed and treated. Simply put, we know how many in the population harbor pituitary tumors.  What we do not know is: how many have unrecognized/undiscovered symptoms not deemed worthy of further investigation and treatment? What, precisely, is the definition of a “clinically significant” pituitary tumor or cyst? Who (if not the patient) gets to decide the severity of the symptoms and what requires treatment?  Who, arbitrarily, decides which tumor is “too small” to be treated? Who decides when a tumor is inoperable or when it is so small it only needs to be watched? Who, and how, does it get decided that headaches, mood-swings, sexual dysfunction, infertility, and weight issues are not related to the pituitary patient’s underlying condition? Suffice it to say, there are more than enough life-threatening or life-altering issues to discuss, but in what setting?  Who can we, the patients and our families, rely on? From university to university, hospital to hospital, the answers differ. Meanwhile, the patients suffer, are inadequately treated and many die. Enough is enough!  

The PNA’s work brings us in contact with so many bright, kind, and thoughtful physicians and surgeons. We realize that their skills and abilities should be exalted and recognized.  We know others out there who could be the next leaders, and should be educated so that they are ready to take their place among the “great ones”!

A Wall Street Journal article on November 14, 2007 called “Cancer Survivors Find Support” by Laura Landro discusses after-care at Cancer Centers of Excellence: “A growing number of  programs offer psychosocial programs to help those affected by cancer. M.D. Anderson Cancer Center offers 75 programs most free of charge.”

We applaud this approach. We wonder how, in the name of rational thinking, can so many hospitals and medical centers hold themselves out as treatment centers of excellence for the pituitary patients – yet fail to offer the final 33 % of a patient’s post surgery/trauma care? Pituitary patients know it isn’t palliative or “comfort” care that we need. We need honest to goodness psychosocial care, and much, much more, just to get our lives back on track.  As for those who survive us? What do they get? Not enough.

Hence, we are forging ahead in an effort to establish criteria for recognizing organizations as Pituitary Centers of Excellence.  We need and want our readers input, so we have developed a questionnaire on the subject.  We want to know what you think should be incorporated into the standards for evaluating hospitals and universities under consideration for the pituitary COE designation. We may lose support from some quarters, but hopefully we’ll gain enough knowledge and support to establish some uniform standards in order for a center to be universally recognized as a Pituitary Center of Excellence.

We want to know what you and your families believe should be added to the list in order to provide excellence in pituitary medicine.  We realize that physicians, surgeons, radiologists, pediatric endocrinologists, reproductive endocrinologists, etc., will have their own list of standards to consider.  We want to hear from all parties with a vested interest. Please help us by giving us a thoughtful idea of what we need to ask for and the problems we need to eliminate.  Please copy and paste the questionnaire into an email, provide your answers and analysis, and send it to Barbara@pituitary.org.  We will summarize the answers for you in future editions of the Highlights newsletter and we will put the matter to a vote at the PNA’s conference in San Francisco, October 1-3, 2008.

Here, without further ado, is the first questionnaire, this one aimed at patients:
 

 1.  What in your opinion, constitutes a Center of Excellence for Pituitary Medicine?
 2.  Do you view your search for diagnosis as excellent, adequate, or a nightmare?  What would you change about the process? Where were you treated?
 3.  Do you and your doctors view your pituitary tumor/disease as a medical or a surgical or a whole body disease?
 4.  Were you evaluated or treated accordingly?  Was the process efficient?
 5.  In retrospect, were you referred to a "quality" center, no center, or just whoever is/was nearby?
 6.  Where did you receive the bulk of your information about your condition?
 7.  Were mental/emotional health staff members made available to you (and your close family)? 
 8.  Have you received follow-up care, intense at first, by your doctors, to ensure that you received complete hormone replacement as needed, with adjustment of your doses?
 9. Did you receive prescriptions for medications to relieve insomnia, depression, anxiety etc.? Was it explained to you what you need at a minimum to stay upbeat, happy,  and come as close to normal function as possible.  
10. Did you receive counseling to help deal with family relations, your career, responses from HR departments, insurance issues, etc.?

    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