The Psychological Behavior Changes of Pituitary Tumors

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Although many advances have been made in the treatment of Pituitary Tumors physically, there have not been many studies on the emotional, psychological effects these tumors cause or the end results after removal and the disruption to the endocrine system that follows.

Only in the last decade has there been interest in how hormonal function or endocrine dysfunction effects psychiatric illness. The relationship of endocrine disease to psychological distress, despite all the research, is rarely mentioned in the literature of endocrinology. Endocrinology textbooks and journal reviews mostly ignore, or only incidentally mention the psychiatric effects of endocrine disorders.

More and more patients with pituitary disease are being evaluated and treated at cancer centers. In many ways, we resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that we experience on our well-being is malignant. Those of us with endocrine disorders experience many emotional problems and personality changes, above and beyond the many adjustments that we must make in our lives.

There is a growing understanding that we may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, the treatment, and the hormonal changes have on our pituitary release of hormones. Many patients have been treated for depression but showed no response.  More recently, doctors have found that treatment for apathy syndrome has shown improvement in patients.

Changes to a persons behaviour can include:

  • hostility and Anger
  • depression
  • apathy
  • increased irritability
  • anxiety and a decreased willingness to socialize
  • emotional insecurity
  • psychotic disturbances
  • cognitive impairment including memory loss and concentration
  • Mood changes
  • loss of motivation and lack of energy and drive
  • Insomnia and other sleep disorders

This all becomes very frustrating for us and we don’t always see the changes that others around us do because they come on very slowly. A depressed mood may have a large influence on our quality of life and on how we experience the endocrine disease process and our interactions with others.  There have been studies that show a correlation between Pituitary Tumors and Suicide. Upon autopsy, pituitary tumors were found in 47.7% of the suicidal group, while in the nonsuicidal (accidental death) group showed only 18.3%.  This is very significant.

People with pituitary disease experience many physical changes also. Our weight can undergo significant fluctuations as well as changes in our physical appearance. We may experience changes in our sexual and reproductive functioning, such as amenorrhea, impotence, and impaired orgasm. We may also develop medical illnesses such as diabetes, hypertension, and coronary artery disease just to name a few.

It’s natural for you and your family to have many questions throughout the diagnosis and treatment of a pituitary tumor. The process can be overwhelming — and frightening. That’s why it’s important to learn as much as you can about your condition. The more you and your family know and understand about each aspect of your care, the better.  You might also find it helpful to share your feelings with others in similar situations. Check to see if support groups for people with pituitary tumors and their families are available in your area although there are certainly not enough. Hospitals often sponsor these groups. Your medical team also may be able to help you find the emotional support you might need.

Many of these symptoms I have been through, or are still fighting, so do not feel you are alone. You will find it hard to explain to others how you feel because your emotions and energy levels can change on a daily basis.  The words that seem to come up in the studies are a lower “Quality of Life”.  My life has certainly changed and there are, of course challenges, but I refuse to call it “Lower”.  If anything, going through this has taught me many things about myself and what is important in my life.  You will find who the people are that stick by your side and support you through it.  There will also be those that don’t understand and chose avoidance or to leave.  I have accepted the loss of some relationships and my marriage but will never really know or understand if the tumor was the cause or not.

I am seven months post op for removal after many, many years and still working towards the hormone balancing act.  I still have many tests to go and for the rest of my life but working towards a better me each and every day.  There is still a fire within me.

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1 in 5 people will have a pituitary tumor in their lifetime

1 in 5 people will have a pituitary tumor in their lifetime. 1 in 600 will have a large tumor like I had. Sadly, only 1 in 100,000 will ever be diagnosed.

Pituitary and Hormonal Difficulties: Signs and Symptoms and What you should ask your Doctor

Symptoms

In today’s world, doctors treat the individual symptoms, not the underlying causes. That was my history for the last six years. If many of the following symptoms are a problem for you, talk with your doctor or find a doctor who is willing to help you solve them.

  • Headaches, particularly with a sudden onset and in the center of the head
  • Sexual difficulties (painful intercourse, low libido, erectile dysfunction)
  • Depression and/or changes in mood (anger, depression, anxiety), “bipolar” diagnosis
  • Recent and or sudden onset of family, friend relationship difficulties in conjunction with physical symptoms on this list including loss of relationships resulting in isolation, loneliness
  • Infertility
  • Growth abnormalities/changes especially of the hands (large fingers), feet, head, jaw and separation of teeth
  • Obesity (especially in the central area of the body), especially weight gain over a short time, rounding or “moon face”, a large bump/hump on the back on the neck/back. Note: if you suddenly are unable to manage your weight with proper diet and increased activity/exercise, this is a hormonal red flag.
  • Eating disorders: excessive weight loss, gain, bulimia. (loss of interest in food or uncontrollable urges to eat)
  • Vision changes including loss of peripheral vision, blurring etc. especially with sudden onset
  • Skin thinning, stretch marks, bruising easily, acne and cuts or abrasions/pimples that don’t seem to heal
  • Carpel tunnel syndrome
  • Menstrual difficulties (irregular periods, discontinued, painful, no ovulation, anything not usual for your cycle), early menopause
  • Fatigue, weakness in the limbs, general muscle weakness
  • Hypertension
  • Arthritis, aching joints, osteoporosis
  • Loss of sleep, changes in sleep cycle
  • Memory impairments, poor concentration
  • Unusual hair growth (on chest, face etc.) or hair loss (falling out in clumps)
  • Skin and hair that becomes extremely dry, scaly and discolored.
  • Lactation not associated with pregnancy (breast leakage…even for men)
  • History of emotional/physical trauma and/or chronic stress
  • Depersonalization i.e. feeling detached from one’s own body/mind

These are some of the more common symptoms. Remember, no one symptom is proof of a Pituitary tumor but it is important to investigate further and to TRUST your own body/intuition if you do not feel right. Some of the above symptoms or a combination of symptoms without an obvious underlying cause should prompt further questioning. Continue to ask medical/mental health professionals until you feel satisfied. Keep a log/record of your symptoms and keep a log of when your symptoms developed. Ask your family, friends if they notice any changes or differences in your behavior or looks. Share your notes and observations with your doctors and mental health professionals.

If you suspect a problem you need to specifically ask your doctor for the following medical tests (and ask for exact results not normal/not normal). If they won’t, find a doctor who will:

  • ACTH
  • Cortisol
  • Estradiol (E2) Extract/Testosterone
  • GH
  • FSH
  • LH
  • Prolactin
  • Somatomedin-C (IGF-1)
  • PSA (males)
  • Free T3
  • Free T4
  • Total T4
  • TSH
  • 24 Hour urine FREE Cortisol (ideally 3 or more tests to rule-out error or hormone cycling)

Then if test results show problems, or if the results are within “normal” ranges but you still have symptoms and are not getting answers you trust then you must be seen by a physician who specializes in pituitary tumors and hormonal disturbances (Pituitary Endocrinologist, Pituitary Neurosurgeon etc.).

A mental health professional may also be able to assist you and your family as you go through the struggle of medical tests and dealing with the symptoms. It is not an easy task. It is important to find a professional who has some understanding of your physical state, specialized training, and/or willingness to learn about Neuroendocrine disorders.

Feel free to ask me any questions.  Although I am not a doctor and cannot give medical advice, I can help to point you in the right direction based on what I have learned.