Pituitary Patient Resource Guide Sixth Edition Additional Information and References

SECTION ONE: INTRODUCTION

Introduction
By Lewis Blevins, M.D.

Chairman’s Foreword – Welcome to the Future
By Robert Knutzen, M.B.A., Chairman, PNA

Foreword
By Sharmyn McGraw, Pituitary Patient

The Powerful Patient: How to Rise Above Adversity
By Robert Knutzen, MBA and Annie Hamilton

How Patients Can Help Prevent Misdiagnosis
By Tammy Mazzella, PNA

Board of Directors

Scientific Advisory Board

PNA Mission Statement

SECTION TWO: SYMPTOMS AND SIGNS OF PITUITARY DISEASE

Chapter One: Types of Pituitary Disorders and their Manifestations

Introduction to Pituitary Disorders: Pituitary Tumors and Hypopituitarism
Daniel F. Kelly, M.D., Garni Barkhoudarian, M.D., and Pejman Cohan, M.D.

Acromegaly – GH-Secreting Adenoma
Adult Growth Hormone Deficiency
Antidiuretic Hormone Deficiency Causing Diabetes Insipidus
Craniopharyngioma
Cushing’s Syndrome and Cushing’s Disease – ACTH Secreting Adenoma
Deficiency of ACTH and Cortisol
Deficiency of LH and FSH (Hypogonadotropic Hypogonadism)
Empty Sella Syndrome
Endocrine-Inactive (i.e., Non-Functional) Adenoma
Hypopituitarism
Prolactinoma
Rathke’s Cleft Cyst
Thyroid Hormone Deficiency (Hypothyroidism)
TSH (Thyroid Stimulating Hormone) Secreting Tumor

The Prevalence of Pituitary Adenomas: A Systematic Review
By Shereen Ezzat, M.D., Sylvia L. Asa, M.D., Ph.D. William T. Couldwell, M.D., Charles E. Barr, M.D., M.P.H., William E. Dodge, M.S., M.B.A., Mary Lee Vance, M.D. , and Ian E. McCutcheon, M.D.

References:

Can Pituitary Tumors Be Inherited?
By Robert F. Gagel, M.D.

References:

Abbreviations:

ACTH – adrenocorticotropic hormone
AIP – aryl-hydrocarbon interacting protein
CNC – Carney Complex
DNA – deoxyribonucleic acid
GH – growth hormone
MEN1 – multiple endocrine neoplasia, type 1
PRKAR1A – regulatory subunit of protein
PRL – Prolactin
TSH – thyroid stimulating hormone

Chapter Two: The Diagnosis of Pituitary Diseases

Acromegaly
By Shereen Ezzat, M.D., F.R.C.P.(C). F.A.C.P.

Suggested Readings:

Prolactinoma
By Michael O. Thorner, M.B., D.Sc., Edited by Shereen Ezzat, M.D.

Cushing’s Syndrome/Disease
By Shirley McCartney, Ph.D., Christine Yedinak, D.N.P., and Maria Fleseriu, M.D., F.A.C.E.

Cushing’s Syndrome: An Update
By Laurence Katznelson. M.D.

Gonadotroph And Other Clinically Nonfunctioning Pituitary Adenomas
By Peter J. Snyder, M.D.

Multiple Endocrine Neoplasia Type 1 (MEN1)
By Stephen J. Marx, M.D.

Hope through Research

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and other Institutes of the National Institutes of Health conduct and support research in endocrine disorders, including MEN1. Researchers are conducting genetic studies to better understand MEN1 gene mutations and their effects. Other studies are examining new drug treatments for hyperparathyroidism, carcinoid tumors, and pancreatic islet tumors. The psychosocial aspects of MEN1 are also under investigation.

Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research. For information about current studies, visit www.ClinicalTrials.gov.

References:

For More Information

Pituitary Network Association
P.O. Box 1958
Thousand Oaks, CA 91358
Phone: 805-499-9973
Fax: 805-480-0633
Email: pna@pituitary.org
Internet: www.pituitary.org

March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone: 1–888–MODIMES (1–888–663–4637) or 914-428-7100
Fax: 914–428–8203
Email: askus@marchofdimes.com
Internet: www.marchofdimes.com

The Genetic Alliance
4301 Connecticut Avenue, NW, Suite 404
Washington, D.C. 20008-2369
Telephone: 1–800–336–GENE (1–800–336–4363) or 202-966-5557
Fax: 202-966-8553
E-mail: info@geneticalliance.org
Home Page: www.geneticalliance.org

American Academy of Otolaryngology-Head and Neck Surgery
1650 Diagonal Road
Alexandria, VA 22314-2857
Phone: 703-836-4444
Internet: www.entnet.org

Acknowledgments

Publications produced by the NIDDK are carefully reviewed by both NIDDK scientists and outside experts. This publication was originally written and updated by Stephen J. Marx, M.D., NIDDK.

You may also find additional information about this topic by visiting MedlinePlus at www.medlineplus.gov.

This publication may contain information about medications. When prepared, this publication included the most current information available. For updates or for questions about any medications, contact the U.S. Food and Drug Administration toll-free at 1-888-INFO-FDA (1-888-463-6332) or visit their website atwww.fda.gov. Consult your doctor for more information.

National Endocrine and Metabolic Diseases Information Service

6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 703–738–4929
Email: endoandmeta@info.niddk.nih.gov
Internet: www.endocrine.niddk.nih.gov

The National Endocrine and Metabolic Diseases Information Service is an information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health, which is part of the U.S. Department of Health and Human Services.

The NIDDK conducts and supports biomedical research. As a public service, the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.

This publication is not copyrighted. The NIDDK encourages users of this publication to duplicate and distribute as many copies as desired.

NIH Publication No. 10-3048
November 2009
Page last updated April 6, 2012

Autoimmune Pituitary Disease or Lymphocytic Hypophysitis
By Patricia Crock, M.D., M.B.B.S., F.R.A.C.P.

Addison’s Disease
By Eileen K. Corrigan, N.I.H., Retired

Suggested Readings:

The following materials can be found in medical libraries, many college and university libraries, and through interlibrary loan in most public libraries.

Pituitary Cancer
By Hasnaian M. Khandwala, M.D., Ian E. McCutcheon, M.D., F.R.C.S. and Keith E. Friend, M.D.

References:

Chapter Three: Complications of Pituitary Disease

Heart Problems in Acromegaly
By Philippe Chanson, M.D.

References

Pituitary Disease: Association With Cognitive Dysfunction
By Wesley P. Fairfield, M.D.

References:

Headaches and Pituitary Tumors
By Peter N. Riskind, M.D., Ph.D.

The Oral Cavity and Pituitary Tumors
By Eric C. Sung, D.D.S.

References:

Keep an Eye on Yourself
By Nicholas Volpe, M.D.

Surgical Correction of the Acromegalic Face
By J. Timothy Katzen, M.D., Mohammed S. Kabil, and Hrayr K. Shahinian, M.D.

References:

Human Sexuality
By Robert Knutzen, M.B.A.

We are pleased to add these links for your educational curriculum and hope that this will assist you in finding better health and a good life.

CNN.com – Study: One in 100 Adults Asexual: http://www.cnn.com/2004/TECH/science/10/14/asexual.study/

Psychology Today – The New Sex Scorecard: http://www.psychologytoday.com/articles/200306/the-new-sex-scorecard

Planned Parenthood – The Health Benefits of Sexual Expression: http://www.plannedparenthood.org/files/PPFA/BenSex_07-07.pdf

Hormones and Sexuality
By Sandy Hotchkiss, M.S.W., BCD

The author wishes to thank Theresa L. Crenshaw, M.D., whose 1996 book, “The Alchemy of Love and Lust” synthesized the current research on hormones and sexuality and provided most of the information for this article.

The Mental Health Side of Pituitary and other Neuroendocrine Disorders
Linda M. Rio, MA, Marriage and Family Therapist

Sick of Being Sick and Tired: When Depression is Not Depression
By Michael A. Weitzner, M.D.

References:

The Stress Response and Its Implications for Pituitary Tumors
By George Chrousos, M.D. and Robert Bock

Emotional Disorder Medications

Chapter Four: Common Issues for Women

The Menstrual Cycle – Getting the “Vital” Respect it Deserves
A Compilation of Abstracts Presented

Psychosocial Aspects of Pituitary Disease in Women
By Donna E. Stewart, M.D., F.R.C.P.C.

Pituitary Disease During Pregnancy
By Martin N. Montoro, M.D. and Jorge H. Mestman, M.D.

Chapter Five: Common Issues for Children

Panhypopituitarism in Childhood
By Mitchell E. Geffner, M.D.

Suggested Readings:

Pediatric Pituitary Tumors
By Cheryl A. Muszynski, M.D.

References:

Chapter Six: Common Issues for Men

Androgen Deficiency and Hypogonadism

Chapter Seven: Testing

Progress in Pathology: What We Have Learned About The Causes of Pituitary Tumors
By Sylvia L. Asa, M.D., Ph.D.

Laboratory Assessment of Pituitary Gland Function
By Jon M. Nakamoto, M.D., Ph.D. and Delbert A. Fisher, M.D.

SECTION THREE: TREATMENT OF PITUITARY TUMORS

Chapter One: Medical Options

Indications for Treatment of Microprolactinomas: An Update
By Anne Klibanski, M.D.

Chapter Two: Surgical Options

Management of Pituitary Adenomas
By Edward R. Laws Jr., M.D., F.A.C.S. and John A. Jane Jr., M.D.

References:

Surgical Management of Pituitary Tumors
By Sandeep Kunwar, M.D. and Charles B. Wilson, M.D., D.Sc., M.S.H.A.

Pituitary Surgery: The Fully Endoscopic Supraorbital Approach
By Hrayr K. Shahinian, M.D. and Yoon Ra, M.S.

References:

Skull Base Approaches for Pituitary Tumors – and Intraoperative MRI to Confirm the Amount of Pituitary Tumor Removal
By Robert J. Bohinski, M.D., Ph.D., Michael J. Link, M.D. and John M. Tew Jr., M.D.

Endonasal Endoscopic Pituitary Surgery: Evolution of the Classic Transsphenoidal Approach
By Daniel F. Kelly, M.D., Garni Barkhoudarian, M.D., Chester F. Griffiths, M.D., F.A.C.S., and Kian Karimi, M.D.

Transsphenoidal Resection of Pituitary Adenomas in an Intraoperative MRI Unit
By Claudia H. Martin, M.D., Richard Schwartz, M.D., Ferenc Jolesz, M.D., and Peter Mcl. Black, M.D.

References:

Surgical Management of Clinically Nonfunctioning Pituitary Adenomas
By Joshua Rosenow, M.D., and William T. Couldwell, M.D., Ph.D.

References:

Chapter Three: Radiotherapy Options

Gamma Knife Radiosurgery for Skull Base and Pituitary Tumors
By Ajay Niranjan, MD, MBA, L. Dade Lunsford, M.D., and John C. Flickinger, M.D.

References:

Neuroendocrine Complication of Radiation Therapy for Non-Pituitary Tumors
By Anne Klibanski, M.D. and Howard H. Pai, M.D., FRCPC

References:

Chapter Four: Hormone Replacement Therapy

Pituitary Hormone Replacement in Women
By Jennifer Larsen, M.D.

Growth Hormone Deficiency in Adults
By Bengt-Ake Bengtsson, M.D., Ph.D, updated by Dr. Peter Sonksen

Androgen Deficiency in Women With Hypopituitarism
By Karen K. Miller, M.D.

References:

SECTION FOUR: LONG-TERM CARE

Pituitary Tumors – Long Term Outcomes and Expectations
By Edward R. Laws, M.D., F.A.C.S., and John A. Jane Jr., M.D.

Long-Term Mortality After Transsphenoidal Surgery for Cushing’s Disease
By Brooke Swearingen, M.D.

SECTION FIVE: THE PATIENTS’ EXPERIENCE WITH PITUITARY DISORDERS

Patient Story
By Sharmyn McGraw

Patient Story
By Esperanza Ramirez

SECTION SIX: PATIENT RESOURCES

Chapter One: Physician and Hospital Listings

Endocrinologists

Pediatric Endocrinologists

Reproductive Endocrinologists

Neurosurgeons

Pediatric Neurosurgeons

Pathology

Psychiatry/Psychology

Radiation Oncologists

Skull Base Surgery

Hospitals/Medical Centers

Pharmaceutical Company/Corporate Listings

Chapter Two: Additional Help and Resources

A Layman’s Quick Checklist For The Acromegalic’s Symptoms, Tests, Remedies

Learn More About Clinical Trials

Glossary

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