Pituitary Disorders; Why So Difficult?

Robert Knutzen, MBA, Chair/CEO, Pituitary Network Association, CA.
And Linda M. Rio MA, MFT, Private practice, CA

Acknowledgement: The Editorial overview and Medical Input of Shereen Ezzat, MD Professor of Medicine, University of Toronto, Ca

Overview

Through many millennia, our understanding and account of scientific discoveries surrounding pituitary disorders has followed a slowly progressive course. That which the ancient healers and physicians of the Greek/Roman Enlightened times could only surmise and come to a gradual understanding of, was not as readily accepted by western physicians and scientists. They required "proof" through first hand observation, embryonic testing methods and the almost reluctant acceptance of findings by successive generations of scientists/researchers.

One may almost look at the "gradual peeling of the Hormonal onion" as meeting with more questions than answers, and confounding the most astute researchers and clinicians with ever deepening layers of mysteries and unresolved issues rather than a gradual enlightenment and understanding of the myriad functions of the Hormonal, particularly the Pituitary aspects, of the Endocrine system.

Brief history of pituitary disorders

In the past 15 years the clinical appreciation of the impact of Pituitary Disorders has accelerated at a gratifying yet dangerously expeditious manner, leaving little time for the advancing knowledge and proper medical practice guidelines to percolate through the medical/patient/public sector and so allow for uniform improvement in understanding and patient care. Medicine, hormonal replacements, surgical and radiological treatment options flourish, to the great satisfaction of the inventing scientists/academic medical practitioners while leaving the great majority of patients both un- and under- treated and in too many instances, un- or under -diagnosed.

At the same time the overwhelming "reach" of Pituitary dysfunction on the patients life and his/her family entity, whether hyper or hypo secretory, "non-functioning", gonadotrophic, incidentally discovered or sought adenomas, because of patient complaints, may also include true tumors, or another of the myriad disorders, diseases, cysts and lesions plaguing the patients and confounding his/her physicians. Conflicting conclusions most often lead to conflicting and ineffective treatment, and an apparently "never-ending treadmill" of symptoms, complaints and misdirected treatment lead to enormous patient/societal costs and deep conflict between patients and their Physicians/Surgeons. Patients too often despair of finding competent help, are denied further testing or treatment by their Insurance Companies and eventually "settle" for Disability Benefits" (the dole) or other forms of governmental/charitable existence without reaching a satisfactory answer to their ailments.

The situational issues would perhaps not be so alarming were it not for the myriad discoveries about Hormonal effects on Mental, Sexual, Metabolic, Reproductive and Bone Health. The often overlapping issues are both conflicting and very costly, and Public Health concerns come into play. The sheer NUMBER of patients, their great variety of complaints and constellation of symptoms, will not for long go unchallenged or unappreciated. Fortuitously, Hormonal Disorders/Diseases are not de-novo concerns like AIDS or Avian Flu or SARS; the Endocrine Community has studied and concerned itself with the issues at hand for many generations but their work goes largely under appreciated in the Great Medical Scheme of Things. Firstly, the Endocrine medical community is not one for raising alarms or issuing warnings. Secondly, the issues are too complicated for the cursory coverage by the lay media.

The myriad of clinical features

It is both confusing and sometimes disturbing to realize that weight gain, obesity and eating disorders are not always associated with over-indulgence and an inability and/or unwillingness to control one's urges, but may indeed be linked to Hormonal hypo-or hypersecretion by the Pituitary gland. Infertility and/or lack of libido can be linked to Hormonal insufficiencies or excess. Classically, a psychological assessment would view eating and sexual disorders from a strictly learning- and/or behavioral perspective or due to dysfunctional relationship patterns or due to childhood trauma and would ignore the potential physiological aspect altogether.

Emotional/Mental health care has undergone a major "overhaul" since the days of Jung and Adler. The concept that a myriad of emotional disorders, from Depression to Bi-Polar disorder to Apathy, may be related to a Hormonal imbalance is new for the psychological community. Hormonal imbalance as a potential etiological factor, not just a difficult childhood or stressful environment and relationships is just beginning to become part of the clinical assessment protocol. Additionally, a potential relationship between psychological and/or physical trauma and imbalances in the endocrine system are slowly being recognized and yet to be fully understood. The psychologists, family therapists, social workers and others are now learning to broaden their understanding of the role of the endocrine system and deepen diagnostic skills to include more interaction with medical professionals who can appropriately rule-out pituitary and hormonal imbalances.

The largest, almost intractable, difficulty facing both patients and the medical community, is an apparent un-willingness or in-ability to agree on fairly simple issues such as symptoms, definitions and classifications. At the one side of the spectrum are the learned, well reasoned words of Dr. Harvey Cushing who in 1913 said: "It is quite probable that the psychopathology of everyday life depends largely upon the effects of the discharge of the ductless gland upon the nervous system."

Or Plato who said: "That as you ought not to attempt to cure the eyes without the head, or the head without the body, so neither ought you to attempt to cure the body without the soul; and this," he said, "is the reason why the cure of many diseases is unknown to the physicians of Hellas, because they are ignorant of the whole, which ought to be studied also; for the part can never be well unless the whole is well."

Though thousand of years separate the two in time; their wisdom and learning was the same. Though the Physiological part of Endocrinology is "Hard" science and the "Psychological part is "Soft" science, the two simply have to "come together" in order to make any major, meaningful advances in Pituitary Endocrinology diagnoses and treatment. Whereas the definition and diagnosis of Diabetes, for instance, is measured in quantifiable terms of blood and Thyroid disorders are evaluated and judged in similar ways, the definition and determination of Pituitary/Hormonal diseases is left almost solely to the judgment of individual medical practitioners, who feel free to include or discount patient reported symptoms and complaints at will. To some Medical personnel a headache is a meaningful symptom of a disorder; to others it is merely an incidental happening, with little or no relationship to either mass-effect nor hormonal hypersecretion. Mood-swings and depression to most clinicians are recognized as a "minor" issue usually treated with antidepressants and a recommended change of life-style.

Family and general relationship functioning is a key indicator to overall patient functioning yet often ignored both pre-and post diagnosis and treatment. Family members often observe and are deeply affected by patient symptoms of increased anger outbursts, sexual dysfunction, depression, and changes in a patient's overall sense and awareness of themselves. The impact of pituitary and hormonal dysfunction on the family cannot be overstated. Assessing marital, family, and relationship functioning as yet another key indicator for diagnosis and treatment has largely been ignored.

Loss of libido, erectile dysfunction, irregular or missing menses are frequently regarded as issues of extraneous, non Pituitary/Hormonal origin, rarely used as a basis for further exploration or a specific diagnostic work-up. Again, change of lifestyle, avoid stress, etc.is the popular medical recommendation. However, those on the Psychological/Mental health side of medicine may well be attempting to treat Physiological symptoms and disorders, caused by hypo or hyper secretion of hormones, often caused by a tumor, in Pituitary patients without making any attempts to link the rather distinct "constellation" of symptoms to an underlying Physiological origin.

However, once a diagnosis of a pituitary adenoma is made, or of a cyst or other related lesion, the Neurosurgeon will often insist this is HIS/HER proscribed territory and if a successful resection is made the surgeon will, too often, tell the patient that he or she is "cured" and go home, recover and get on with life. Sadly, this does not often happen, and whether months or years later, the patients is complaining of new, often worse, symptoms and not understanding why the cure did not last! Endocrinologists, on the other hand, too often insist that their prescribed regimen of Medication is sufficient,and the patient should just resign her/himself to "be grateful" for life, regardless of the Quality! Only in very rare instances do the two "opposing" views recognize the need for Psycho-Social intervention and even medical treatment for mental, behavioral,family/relationship, or cognitive dysfunction.

One cannot help but believe that once a commonality of understanding is reached, treatment and solution will follow in rapid order. It is clear from studies conducted over the last century that secretory pituitary tumors are prevalent, by a magnitude of hundreds of times over those numbers previously believed. Non-secretory (previously referred to as non-functional) may indeed be gonadotrophs, first and foremost attacking the sexual well-being and functioning of the patients before progressing to the emotional/.mental health states. In addition, we have a remarkably large array of disease states affecting the pituitary from Hypophysitis to Craniopharyngiomas. All such conditions can result in profound impact manifested by serious and life altering health problems.

A suggested course-call for unity!

A five-way partnership has to be formed in order to set the stage for solid success and rapidly forward momentum in the care of patients with pituitary disorders. Patients & family/endocrinologist/ surgeon/and mental health care providers must be part of the diagnostic and "after acute care", stage, of life-time care to insure not only a chemical "cure" but also the Healing so vital to the patient's ability to return to his/her place in family and society.

Available Now!

PPRG5Cover3e
The first electronic version of the Pituitary Patient Resource Guide is now available! Be one of the first to have the most up-to-date information. The Pituitary Patient Resource Guide a one of a kind publication intended as an invaluable source of information not only for patients but also their families, physicians, and all health care providers. It contains information on symptoms, proper testing, how to get a diagnosis, and the treatment options that are available. It also includes Pituitary Network Association's patient resource listings for expert medical care.

Buy Now