From Linda M. Rio, MA, Marriage & Family Therapist, author and Pituitary World News contributor – I received an email recently from a woman in another country who expressed a lot of frustration with her current endocrinologist who convincingly told her that her Prolactinoma absolutely had no connection to the intense anxiety symptoms she was experiencing. I have a lot of respect for physicians but also know they get very little training in mental health, and likewise, mental health professionals receive minimal coursework in the biological sciences. I provided this woman with some research articles showing a strong link between some pituitary disorders and mental illness, especially depression and anxiety disorders. But, I provide here a very important caveat. Having a strong link between any two things does not prove causality. What this means is that yes, some form of mental illness frequently accompanies those with serious endocrine disorders but this does not mean that the tumor causes the mental illness nor does it mean the mental illness causes the tumor. There are reliable research studies showing severe stress, childhood trauma, and/or physical trauma increase the likelihood of the development of a pituitary tumor. There are, of course, many people who experience such events and do not develop pituitary or other endocrine disorders. One day, perhaps a more direct link will be explained by science but for now, we must accept that there is a relationship, not cause. Sometimes the question is asked, what comes first the chicken or egg? Does the tumor come first causing a host of mental/emotional issues, or does the extreme stress of mental “disease” contribute to the formation of a tumor?
For many, the answer to such questions or determining this distinction may not matter. Those suffering want the pain to go away. I have found that it is important for patients to be validated for the mental health symptoms that they know to exist. Hearing there is a connection between their mental health struggles their pituitary illness can be very comforting. Just because depression, anxiety, mood disorders, and more can’t be seen on a MRI scan doesn’t mean the pain or agony felt is not real. It can also be validating to know you are not alone and that others with similar tumors also have accompanying depression, suicidal thoughts, sadness, uncontrollable mood swings, irritability, anger and rages, intense anxiety, brain fog, poor concentration/memory, etc. All these have been documented as often, but not always, accompanying pituitary/endocrine disorders.
Mental health issues have historically been seen as having lesser importance or severity than physical ailments. And, anyone suffering from a serious and/or chronic medical health issue is very likely to have encountered either the fear or actual stigma attached to their mental health diagnosis. Relationships of all kinds also feel the fallout from any serious illness, mental or physical. According to the U.S. National Institutes of Mental Health (NIMH) approximately 1 in 5 adults in the U.S.—43.7 million, or 18.6%—experiences mental illness in a given year.1 Bipolar disorder affects 2.6% of adults.2 18.1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder, and specific phobias.3 It is alarming to learn that only 41% of adults in the U.S. with a mental health condition received mental health services in the past year. An estimated 9.3 million adults (3.9% of the adult U.S. population) reported having suicidal thoughts in the past year.4
Such statistics demonstrate that mental health issues are real for those with pituitary disorders as well as many others. It is yet unknown how many of these statistics reflect those with an accompanying pituitary or other endocrine disorder. Doctors, family members, friends, co-workers need to learn ways to truly acknowledge the pain and suffering and to stop making people feel like second class citizens because they deal with mental health concerns. It is also important to have a realistic expectation of pituitary neurosurgery and endocrine medicine as patients often report their mental health symptoms may actually get worse following treatment, at least for a while. Hopefully, patients and their family members are informed by their doctors and as prepared as possible for the waves of emotional shifts that can occur following such procedures as neurosurgery to remove a tumor or the body’s adjustments to medications prescribed. Feeling “crazy”, or “losing it” is tough, but a little bit better if you know it is expected and understood by your doctors.
Improving a person’s overall quality of life is the goal of both medical and mental health treatment approaches and both are often recommended for pituitary patients and their families. In addition to highly specialized medical treatment by those with expertise in pituitary disorders, it is often recommended that patients seek additional help from a psychiatrist, psychologist, marriage & family therapist, and/or social worker. In addition, support groups can be very beneficial. Such groups are often hard to find unless attached to a major pituitary treatment center but even online chat or support can be helpful as long as the focus of such groups is on healing and support rather than anger and despair.
Mental health resources and organizations:
The National Alliance for Mental Illness: https://www.nami.org/
The American Association for Marriage & Family Therapy: http://www.aamft.org/iMIS15/AAMFT/
The American Psychological Association: http://www.apa.org/
The National Association of Social Workers: https://www.socialworkers.org/
The National Institute of Mental Health: https://www.nimh.nih.gov/index.shtml
Citations
- Any Mental Illness (AMI) Among Adults. (n.d.). Retrieved October 22, 2015, from http://www.nimh.nih.gov/health/statistics/prevalence/any-mental-illness-ami-among-adults.shtml
- Bipolar Disorder Among Adults. (n.d.). Retrieved October 22, 2015, from http://www.nimh.nih.gov/health/statistics/prevalence/bipolar-disorder-among-adults.shtml
- Any Anxiety Disorder Among Adults. (n.d.). Retrieved October 22, 2015, from http://www.nimh.nih.gov/health/statistics/prevalence/any-anxiety-disorder-among-adults.shtml
- Suicide Facts. (n.d.). retrieved October 21, 2015, from http://www.cdc.gov/ViolencePrevention/pdf/Suicide-DataSheet-a.pdf
Note: Linda is a Marriage and Family Therapist practicing over 28 years in Camarillo, California – www.lindamrio.com – . She presents at conferences and consults with mental health professionals worldwide to help them understand the connections between pituitary and other endocrine disorders and mental health. Linda is most grateful to Dr. Lewis Blevins, MD, for his contribution to, The Hormone Factor in Mental Health: Bridging the Mind-body Gap (2014)
The book is available through Amazon.com and other major booksellers!
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I had my tumor removed in 2000. It is now 2018. I believe I am affected til this day by some kind of side effects. Really don’t feel like any doctors listen to what you are telling them. My emotions are all over the place. Vision is worsening. Have issues concentrating, etc… I have had an MRI of the Brain and it has not returned but could all this be the cause of the surgery?
My wife suffered from a pituitary tumour. In her final months she suffered from blurring vision. The MRI showed that her tumour had not grown and was not pushing against her optic nerve. Her neurologist said surgery was not possible and she just had to live with it. I’m not sure if the tumour was a cause of her depression and inevitable suicide or if her tumour was caused by her traumatic upbringing. All I know is she had this tumour, became more and more depressed, took medication that would work for a few weeks and then stop working. No one gave us any answers. It’s been 8.5 years since my wife took her life and even though I’ve been able to move forward I sometimes wonder if her tumour was a cause of her spiral? I hope anyone suffering from this tumour can find help from a Doctor with more answers than my wife ever received.
I am so very sorry for your loss. Sometimes I feel like they will never listen… I don’t have mine anymore as I stated in the last one but I do believe it is causing side effects and I can’t get anyone to listen. On the outside looking in I believe everyone thinks I am just making it all up.. I am trying to get through it Day by day and thank you so much for responding. I am truly sorry that you had to go through the loss of your wife and I am especially sorry she didn’t find the help she needed.. I will keep trying….
KB… forst of all I greatly admire your courage!!! I don’t have a pituitary gland problem, however my brother in law has a tumor. I’ve known him for 27 years. We, as a family, have noticed that his symptoms have been getting worse over the past several years. He is really getting more aggressive and really making it hard on my lovely bride of 27 years, his sister. My wife suffers from bipolar disorder with sycophantic disorder. and PTSD.. and several other disorders.. I have mental illness myself. Reading remarks like yours makes me feel better. Thanks for helping me!!! You are making a difference!! For me and I hope many others like us.. thanks for sharing
KB, I was diagnosed with a microprolactinoma in Oct 2014 and I know exactly how you are feeling. I have mood swings, trouble concentrating, have low energy and want to sleep all the time. I stopped socializing because I feel no one understands the way I feel. I too, feel like people are judging me. I’m still trying to figure out what my new “normal” is, because I am unable to feel like the old me. Hang in there. You are not alone
Christine here,had my rare acromegaly tumor removed in February.I paid 3 Dr’s to be there ginny pig. They had terrible bed side manners. No communicate, still never saw1 MRI had 9. My husband was with me every step of the way. Could never have made it without him. Our family Dr was the best!!! He explained Everything I’m worse off now. I’m scared& in pain. Thanks for letting me vent. Christine.
I was just told today it more then likely that I have a tumor in my pituitary gland. I’m waiting for an MRI of my brain to better know what’s going on. I am nervous and scared. What’s after the MRI? I have so many questions.
I’m 62 and I think that I’m one of these😟
How do I begin to get to the connections to start a new more better focus on the solutions to the anxiety and mental jumbles. Dr’s can they hear me.
My daughter aged 24 was diagnosed with a prolactinoma over 2 years ago and 20+ times since has been hospitalized psych with no acknowledgment or follow up re pituitary. Why is it that nobody seems to care about the root cause of the problem and just wants to treat the resulting mental health conditions? Her primary care doctor has been little more than useless ignoring requests for referral or authorizations for her to see specialist or be referred to a hospital with a pituitary center and the psych hospitals seem oblivious and uneducated in this condition and seem unaware that psych meds can exaserbate these tumors.
I want to acknowledge all the comments made to my article. I truly wish all your stories of not being “heard”, validated for your emotional, mental pain was not true still in 2021. This is why PWN and others are trying to get accurate, informative, and trans-professional research and current information out to not only doctors and therapists but mostly to patients and their families. I am willing to briefly consult with any professional who you may be working with who is willing to learn. There are no simple answers or cures but together we can make things better!