It is with great pleasure that we bring you the second edition of the
Pituitary Patient Resource Guide, the world's only reference guide for pituitary patients, their families, their physicians, and all health care providers. Better, bigger (50% bigger!), and more complete than ever before, it is our answer to your calls, letters, and demands for more information, deeper knowledge, and better explanations!
For those who are unfamiliar with the first edition of the Resource Guide, you will find this book a very welcome relief in your struggle for greater understanding of your own condition, as well as the options and treatments open to you. There is simply no such gathering of information for pituitary patients anywhere else in the world, in any form. This book is packed with articles on a wide range of issues faced by pituitary patients, as well as listings of hospitals, medical centers, and physicians that specialize in the treatment of pituitary disorders. The Resource Guide will also help you find the appropriate doctor for you, and additional resources and organizations around the world, and on the Internet. This book is the best launching pad you can have in your struggle.
Much has happened since the first edition of the Resource Guide in 1995. New medicines have been approved, and new methods and modalities have been tried and implemented (or discarded). The medical and patient-care communities and insurance companies/HMOs are under attack regarding cost and government regulations as never before, and not just in the United States. But as is always the case, we the patients are paying for it in more ways than one. Patients are denied services and medicines in many countries because it is just not "cost effective".
However, we know this with certainty; more pituitary patients are being discovered earlier and treated better than ever before. By using the Resource Guide, our newsletter, and our Web site at www.pituitary.com, they are being listened to and taken seriously by their physicians and their HMO's - and hopefully - their governments.
For the first time, in this edition, we are introducing articles by physicians and patients alike, driving home the points we have made for years; that emotional and sexual aspects of pituitary disease need and deserve more attention! These subjects have been virtually neglected since they were first described by Dr. Harvey Cushing, the teaching pioneer in pituitary disease. We have elected to place these issues squarely in the middle of the table for all to see.
It is estimated that between 1 and 2 percent (60 million to 120 million people) of the world's population harbor clinically significant pituitary tumors. Approximately 22% of all adults have been found to harbor pituitary adenomas (tumors). While most of these tumors are thought to produce no symptoms, it is, in fact, unknown to what extent most of these tumors affect the hosts. Much still remains to be learned about pituitary functions and disease(s).....
...The pituitary is an intriguing yet confusing organ that is essential for life. This tiny bean-shaped tissue, hidden within the cranial cavity and well protected from external insult, is responsible for the production of hormones that determine growth and development, sexual maturation, reproductive function and lactation. It regulates thyroid and adrenal function that in turn are responsible for maintaining all bodily functions from protein, carbohydrate, fat and water metabolism, to blood pressure, sleep cycles and immunity. Its importance is obvious, yet it is the site of common pathology. Despite our advances in medical science, we remain ignorant of the cause of most pituitary diseases.....
....A question that patients frequently ask is "Why have I developed a pituitary tumor?" A second is "Could I pass this pituitary tumor on to my children?" In most cases, the answers to these questions are not straightforward. However, research is beginning to provide answers to some of these questions....
....Patients with pituitary tumors often require medication therapy to suppress hormonal hypersecretion, to replace the missing hormone(s) or to accomplish both tasks. It is absolutely imperative for the patient to participate actively in the choice of therapy and to comply with the treatment protocol. An active discussion of the reasons for a particular treatment, the goals to be accomplished and the potential pitfalls is a necessary prerequisite for a successful cooperation between a knowledgeable endocrinologist and an intelligent patient....
....A prolactinoma is a tumor in the pituitary gland, which secretes a hormone called prolactin. Pituitary tumors are clinically evident in about 14 people in 100,000. However in postmortem studies about 1 in 20 subjects have a small prolactinoma. This tumor is in over 99% of cases benign. It is the most common type of pituitary tumor. Prolactin is the milk hormone and levels of this hormone in the blood rise during pregnancy to stimulate and prepare the breast for lactation. After delivery of the baby the prolactin levels will fall unless breast-feeding takes place. However if the baby is allowed to suckle then the mother's prolactin will rise in response to the suckling to maintain milk production....
....Beyond the "Big Three" sex hormones---testosterone, estrogen, and progesterone---are a cast of other endocrine characters---peptides and neurotransmitters, as well as hormones---that all exert powerful influences on our sexuality in sickness and in health, for better or for worse, till death do us part. Some, such as pheromones, dopamine and serotonin, have begun to creep into the periphery of our awareness as medical science advances and collides with popular culture, while others, such as oxytocin, vasopressin, prolactin (known to many pituitary-tumor patients) and the alphabet-soup hormones DHEA, PEA and LHRH are primarily the turf of medical researchers, animal labs and arcane professional journals.
...Knowledge is power, however, and the more we know about the way our bodies work, the better advocates we can be for our own health and well-being. Information not only helps us make sense of our experience, it also makes us better able to communicate with our doctors so that we are more likely to get what we need---and want....
....Pituitary tumors often cause sexual problems. This can be one of the most troubling aspects of the disease. Pituitary patients and their sexual partners need information and guidance to deal with these problems. Yet discussion of sexual issues is often lacking in literature written for patients, and many doctors are neither well-informed nor comfortable talking about sexual dysfunction.
How could a tumor on the pituitary, a small gland inside the skull, affect sexuality? Most people only know the pituitary (if they have ever heard of it at all) for its role in promoting growth during adolescence. As most pituitary patients know, however, the pituitary secretes eight different hormones which control diverse bodily functions including growth, metabolism, lactation, and reproduction....
....Functioning and non-functioning pituitary tumors affect the reproductive system. The pituitary tumor may compromise the function of the remaining pituitary gland resulting in decrease in other hormones normally secreted by the pituitary. After pituitary surgery or irradiation, normal pituitary cells may be damaged which will lead to the deficiency of other pituitary hormones. The symptoms of hormone deficiency may become apparent only after many months or years....
....It comes as no surprise that the most neglected effect of pituitary disease is the emotional distress that results from the massive disruption that occurs in one's life and the impact the illness has on one's loved ones and significant others. The impact of the emotional effects of pituitary disease was not lost on Harvey Cushing, perhaps one of the most influential surgeons of the 20th century, particularly with respect to the pituitary gland. Although not a trained psychiatrist, he greatly appreciated the impact that hormonal alterations from pituitary disease had on well-being and emotional functioning. In fact, he had stressed the need to study the emotional side effects of endocrine disorders as well as the impact that hormonal alterations had on preexisting coping patterns. Unfortunately, not much research has been conducted in this area. It is only in the last decade, the "Decade of the Brain," that the relationship between brain structures, neurohormones, neuropeptides, and emotions has become clearer....
