Forging the Difficulty of Pituitary Disorders

At the same time, the overwhelming reach of pituitary dysfunction on the patient’s life and family has increased. The diagnoses might be: hyper- or hyposecretory, non-functioning, gonadotrophic, incidentally discovered, sought adenomas, tumors, or other disorders, diseases, cysts and lesions. The lack of a widely adopted diagnostic and treatment regimen often leads to conflicting and ineffective treatment, and a seemingly neverending treadmill of symptoms, complaints, and misdirected options, upping costs and potentially increasing conflicts between patients and their physicians.

Many times, patients despair of finding competent help, are denied further testing or treatment by their insurance companies, and eventually settle for disability benefits or other forms of governmental/charitable existence, without reaching a satisfactory answer to their ailments. Why?

Fortunately, hormonal disorders/diseases are not de novo concerns like AIDS, avian flu or severe acute respiratory syndrome (SARS); the endocrine community has studied and concerned itself with the issues at hand for many generations, but their work goes largely underappreciated. First, the endocrine medical community is not one for raising alarms or issuing warnings. Second, the issues are too complicated for the cursory coverage by the lay media.

Clinical Features

It is both confusing and even disturbing to realize that weight gain, obesity and eating disorders may not be associated with overindulgence or an inability or unwillingness to control one’s urges – but that they may be linked to hormonal hyper- or hyposecretion by the pituitary gland. Infertility and/or lack of libido can be linked to hormonal insufficiencies or excess. Traditionally, a psychological assessment would view eating and sexual disorders from a strictly learning and/or behavioral perspective, or disorders due to dysfunctional relationship patterns or childhood trauma. This vein of thought would ignore the potential physiological aspect altogether.

Emotional/mental healthcare has, however, undergone a major overhaul since the days of Jung and Adler. The concept that myriad emotional disorders, from depression to bipolar 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 is slowly being recognized and is yet to be fully understood.

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 unwillingness or inability 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.”

Although thousands of years separate the two, their wisdom and learning is 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 mellitus, 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 patients’ 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 or hormonal hypersecretion. Mood swings and depression, to most clinicians, are recognized as a minor issue, usually treated with antidepressants and a recommended change of lifestyle.

Family and general relationship functioning is a key indicator to overall patient functioning yet is often ignored pre-and post-diagnosis and during 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 (ED), and irregular or missing menses are frequently regarded as issues of extraneous, non-pituitary/hormonal origin, and are rarely used as a basis for further exploration or a specific diagnostic work-up. Again, change of lifestyle and avoidance of stress are the popular medical recommendations. Those on the psychological/mental health side of medicine may well be attempting to treat physiological symptoms and disorders, caused by hyper-or hyposecretion 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 prescribed territory, and if a successful resection is made the surgeon will, too often, tell the patient that she is “cured” and should go home, recover and get on with life. Sadly, maybe months or years later, the patient is complaining of new, often worse, symptoms, 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 himself to being grateful for life, regardless of the quality. Only in very rare instances do the two opposing views recognize the need for psychosocial 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) tumors 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, there is a remarkably large array of diseases affecting the pituitary, from hypophysitis to craniopharyngiomas. All such conditions can result in a profound impact, manifested by serious and life-altering health problems.

A Call For Unity

A five-way partnership must be formed in order to set the stage for solid success and create a forward momentum in the care of patients with pituitary disorders.

Patients, together with their family, endocrinologist, surgeon and mental healthcare providers must be part of the diagnostic and post-acute care stage to ensure 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.

To learn more, visit http://pituitary.org. The PNA (Pituitary Network Association) website offers tips on symptoms, research, patient stories, latest studies, supporting physicians and hospitals. The information that is available will prove invaluable to those involved in all areas of the medical field.

The lifeblood that allows the PNA to exist is support received through your donations. Were it not for your generosity, the PNA would not be able to help patients with pituitary disorders. You can make a donation online at our website, fax or call the PNA at 805-499-9973. You may also consider becoming a member of the PNA. This will give you the opportunity to engage in conversations with other patients and doctors, ask the experts and stay up to date on new research and industry news. You can become a member by signing up on the website.
 

Acknowledgement: The authors would like to acknowledge the editorial overview and medical input of Shereen Ezzat, MD, Professor of Medicine, University of Toronto, Canada.

Robert Knutzen, MBA, is Chairman of the Board, Chief Executive Officer, and co-founder of the Pituitary Network Association (PNA). He co-edited Psychotherapy and Psychosomatics; Emotional Aspects of Pituitary Disease and has contributed entries to Comprehensive Clinical Endocrinology, third edition. Linda M. Rio is a licensed Marriage and Family Therapist who specializes in the treatment of children and adolescents, in addition to working with adults and families. She teaches and lectures on a variety of subjects, including the effect of hormonal disturbances on emotions, and personal and family relationships. Ms. Rio currently serves as President-elect of the California Division of the American Association for Marriage and Family Therapy (AAMFT-CA). She co-authored The Anorexia Diaries: A Mother and Daughter’s Triumph over Teenage Eating Disorders.