Pituitary and Neuroendocrine disorders are often complex and difficult to diagnose. A variety of highly skilled doctors who collaborate and communicate about what is in the patient’s best interests is utmost in importance. Often in addition to the endocrinologist, pituitary neurosurgeon, primary care doctor, nurse who is familiar with such disorders, additional professionals such as psychologists and marriage and family therapists may be very helpful and necessary. Treatment not only involves getting a diagnosis (which may take a lot of time and many medical tests), but then deciding with the doctor the best treatment options. Treatments can produce anxiety and fears not only for patients but family members as well. Professionals who collaborate as a team will better be able to understand the unique needs, fears, questions patients and family have, but also be better able to follow patients through the entire process from pre-diagnosis to post critical medical care toward a lifelong plan for optimal health and wellness.

The confusing constellation of symptoms that can be produced by pituitary tumors and the difficult to visualize location make diagnosis very tricky. It is not uncommon for patients to have symptoms of either hormonal deficiency (caused by compression of the pituitary or its “stalk”) or hormone excess (caused by unregulated production of hormones by the pituitary tumor). In a significant minority of patients diagnosis is not made until the individual has developed debilitating or life-threatening symptoms of heart disease or adrenal (uncommon), gonadal and/or thyroid insufficiency. Even in the 21st century death from a large pituitary tumor or hormonal deficiency still occurs, albeit rarely. Early diagnosis is usually a reflection of a high index of suspicion on the part of a physician. Unfortunately, many doctors have been taught that pituitary disease is rare, so it is not at the forefront of their list of possible diagnoses.

No. There are more than a dozen very different disorders that result from pituitary tumors and disease. For example, if a tumor forms in an ACTH secreting pituitary cell, it could result in the overproduction of cortisol (Cushing’s Disease) or the underproduction of cortisol (adrenal insufficiency, often referred to as Secondary Addison’s Disease). Cushing’s is a condition characterized by excessive fat accumulation in central parts of the body (obesity, including a rounded or fat-filled face), diabetes, hypertension, a low serum potassium, thinning and bruising of skin, and osteoporosis. Symptoms of adrenal insufficiency include dehydration, low blood pressure and sodium level, and excessive weight loss. Primary Addison’s Disease is caused when the adrenal glands fail to work on their own, i.e. fail to respond to directions from the pituitary and hypothalamus.

If the tumor forms in a growth hormone producing cell, it can overproduce growth hormone. Tumors that form from growth hormone producing cells cause two different clinical pictures. If they occur in children before the growth plates in long bones have closed, excessive growth hormone will cause gigantism. (Do you recall the movie “My Giant” with Billy Crystal and the basketball player?). If the growth hormone excess occurs during adulthood there is excessive enlargement of the hands, feet, and jaw, as well as soft tissue swelling of many tissues (acromegaly). Acromegaly is associated with an increased probability of developing diabetes mellitus, heart attack, hypertension, and certain types of cancer including malignancy of the colon. Most commonly the facial changes develop subtly and may not be noticed by the patient or his/her family.

Autopsy reports and radiologic and MRI evidence from around the globe indicate that one out of every five people worldwide has a pituitary tumor. The earliest study took place in 1936, when Dr. R.T. Costello of the Mayo Foundation conducted a cadaver study and found pituitary tumors in 22.4 % of the population (Costello R.T. Subclinical adenoma of the pituitary gland. Am. J. Pathol. 1936; 12:205-214). Statistics have not changed much ever since. The clinical significance of these findings are critical to determine.

1. Pituitary tumors/disease present a vast array of symptoms, and it’s often the symptoms that get treated, not the disease. As a result, pituitary patients can spend years being misdiagnosed as their tumors grow. People with undetected pituitary tumors can die of heart attacks, hypothyroidism, adrenal insufficiency or water balance problems, all of which can mask the main cause: a pituitary tumor.
2. Dollars spent. As a result, we have failed to answer the most important question: Why are pituitary tumors so common?
3. There is a lack of education within the medical community and among the general public.
4. The insurance industry hasn’t caught on to the untold billions of dollars that could be saved through early diagnosis and treatment. Once it becomes clear that it’s in everyone’s best interest, the word will spread.