What Do Patients and Their Families Really Need?

From Linda M. Rio, M.A., Marriage & Family Therapist and PWN contributor

“I’ve come to the conclusion that the way we engage with social media is like fire. You can use it to keep yourself warm and nourished, or you can burn down the barn. It all depends on your intentions, expectations, and reality-checking skills.” -Brene Brown

 

There are many profoundly intelligent and skilled physicians whose expertise is in the diagnosis and treatment of pituitary and other endocrine disorders. Pituitary Centers of Excellence have been developed to meet the highly specialized, multi-disciplinary medical needs of patients. There are highly skilled nurses who specialize in this patient population. Medical researchers, technicians, and others also are earnestly serving a niche market among all the medical illnesses that exist. An extremely small number of mental health professionals now know about pituitary disorders and more and more are learning. The one question that keeps coming to my mind is: are we meeting all or at least enough of the needs of patients and their families?
The answer to the above question, of course, cannot come from me, nor any of the aforementioned professionals. The answers must come from patients and their family members themselves. And, have we properly asked these question? Because sometimes we don’t know what we don’t know, is it possible that there is more to know, and have we even been asking the right questions? I do have a point here so please try to follow my sometimes circuitous logic.
There are numerous accounts from patients and their doctors who report months to years to decades’ delays for patients to finally obtain a proper pituitary disorder diagnosis. Among these reports are documented visits to numerous physicians, psychiatrists, therapists, chiropractors, dentists, weight loss specialists etc. etc. who all missed the diagnosis or at the very least did not have enough training, expertise, or information to even suspect a tumor. So, the question that keeps coming to my mind is if patients and their close family, friends were to go back in time with the power of hindsight would there have been signs that could have been detected long ago or at least sooner? I also wonder if when looking back many patients might now say, “I knew something serious was going on”, but just didn’t know what. Is there some wisdom that could be culled from looking back as well as looking forward? Are there delays in diagnosis and treatment because medicine is not capable of detecting these, sometimes minute and difficult, tumors? Is it also possible that there may also be other factors at play within patients themselves?

Are pituitary disorders really “rare”?
In 2004 a study was conducted by Shereen Ezzat et al that showed an overall prevalence rate of 16.7% (2004). There have been additional studies confirming this rate and even ones higher. Of course, the prevalence of a tumor does not indicate disease or illness. We know that many people have pituitary tumors without symptoms. But, do we know how many people have symptoms which are directly or indirectly related to a pituitary tumor or other pituitary disorder that have not been attributed to such?
I personally have worked with, communicated with, and know of a lot of folks either who have a pituitary tumor or have a family member who has someone in their family who suffers a pituitary related disorder. Several first-hand accounts are included in my book because I found the stories of physical and emotional pain so incredible and only those with that pain could tell their stories best. Every time I am asked to speak on this topic someone comes up to me to say they know someone with a pituitary tumor. Just recently at a holiday party for a local non-profit, a marriage and family therapy intern came to me saying she has a client she’d like to consult with me about who has a pituitary disorder. This intern was unable to tell me what type of pituitary tumor her client has because she had not been trained to ask the more extensive questions to get to a better medical understanding which might then lead to an improved psychological perspective. Once again, we don’t know what we don’t know.
But, what if there are symptoms that patients, even their physicians, do not even know could be attributable to the pituitary? What if there are signs far earlier and just not seen as meaning more? What if not only medical and mental health professionals were more aware and well-trained to spot earlier signs but the general public also had information such as how to spot signs of heart attack, stroke, even the flu versus a cold? Even if tumors were diagnosed earlier would medical science currently have the capacity to help at the very early stages?

Is there a mental health missing piece?
The neuroendocrine system regulates how mammals react to stress and also regulates many body processes. Immune system functioning, mood, emotions, sexuality, digestion, energy storage and expenditure are all regulated within the neuroendocrine system (Blevins & Rio, 2014). In my opinion, all physical illness has a mental health aspect, even if not meeting criteria for diagnostic purposes. Anyone who has suffered physical pain or illness, especially if the pain and/or discomfort is chronic knows the likelihood of an accompanying mental health issue rises dramatically. It can be difficult not to become depressed sometimes, for example, if you are unable to work due to illness, or if you are physically incapacitated in some way. Chronic illness systemically affects individuals and families, in that the illness impacts the whole (family) system, rather than just the individual with the diagnosis (Banker, Burke, & Rio, 2014). This is not to say such things as anxiety or depression are inevitable in such circumstances, but certainly understandable and not unexpected.
But there is also a unique relationship between some pituitary disorders and mental health symptoms that, I believe, has not yet been fully explored or even discussed. We know that in some cases of pituitary illness the mental health aspects far predate the physiological signs. Medical accounts showing such a relationship are well documented. Replacement therapy in cases of pituitary failure – hypogonadism, hypothyroidism, and hypoadrenalism are followed by immediate amelioration in affect and behavior (Sonino, Tomba and Fava 2007). Medical treatment of pituitary dysfunction sometimes greatly improves mental health symptoms. Cases of prolactinomas in which normalization of prolactin levels is followed by improvement in the libido and sexual function in many cases (Rothchild E 1985; Sobrinho et al. 1987). Given all that is known, from history through today, it is nearly impossible for someone’s quality of life to not be impacted following the diagnosis of an endocrine, or hormone disorder that may range from variations within “normal” limits, to severe hormonal imbalances or tumor growths (Blevins & Rio, 2014). What science does not yet know is which causes which…the tumor or the depression/anxiety etc. or even is there a “causality”? So far, the evidence that environmental factors might play a part in the etiology of pituitary-dependent pituitary tumors had been confined to prolactinomas and Cushing’s disease (Sobrinho, 2014). Dr. Luis Sobrinho (2014) further states that data so far suggests that psychogenic factors may play a causal role in prolactinomas, Cushing’s disease and acromegaly (p 109).

Is there a need for specific mental/emotional health interventions designed for pituitary patients and their families?
If there exists a connection between the medical and mental health aspects of pituitary disorders has this been fully explored, explained, and treated? I think not. I believe only the tip of this iceberg has been revealed and, once again, we don’t know what we don’t know. How many pituitary patients went to mental health providers for months, years for symptoms that could not be healed by talk therapy alone and the connection between the biological and psychological certainly was never addressed or questioned? How many pituitary patients experienced divorce, disconnection with children or other family members, job loss etc. because of emotional dysregulation of their stress response system (endocrine)? And, how many patients once medically diagnosed and properly treated still had to deal with the ravages of the years it took to get the proper treatment, not to mention time until full medical recovery? Once medicine has properly applied the long-delayed treatments patients and their frequently exhausted family members are often left in the wake of years of destruction from their disordered pituitary. Patients still have to learn how to deal with a body that physically may not resemble what they, family and friends recall. How does one rebuild a life after living without sex, social connections, self-esteem, physical stamina and so much more? Even the most expert medicine cannot “fix” these things. There seems, to me, to be a gap, a crevasse between the medical and mental/emotional treatments for patients and their families. Organizations such as Pituitary World News are trying to span that divide and yet maybe there is more to be done.
Speaking up
Our world, some say, has only recently reached a tipping point where women and men who have been victimized in the workplace are now feeling empowered to speak up about injustices done to them. I heard recently someone say that ‘silence is complicity’. I wonder if those with “rare” pituitary disorders have also been silenced for too long? Do they have needs, requirements that have not been met? Are they really all that “rare” or rarely found? Have families of pituitary patients been heard, or even been asked about the effects a tiny tumor can have on their lives? Has the media adequately and accurately portrayed the depth and scope of all of this? Looking back in time were there signs that no one recognized or acknowledged when attempts were made by patients to speak-up? And maybe most importantly, do we, the professionals who are supposed to be of service, truly listen?
I don’t know if the questions I have about the pituitary patient and family experience are the right ones. But, I am willing to bet there are questions out there that we all should be asking, demanding to be asked. Medical and psychological researchers need to know if there are research questions that need to be explored, uncovered. What about the financial effect on society as a whole when people cannot concentrate or function? What does it do to a collective society to have people be so unheard and untreated? I believe it is only the patients and those closest to them who may be able to provide the guidance with their insights.
In an age of instant and global information sharing, it seems unfathomable that everyone would not know about the importance and function of the pituitary. But, realistically there is a lot of competition out there for important things. So, I present to all patients, their families, and friends a challenge: proclaim your voice in order to spread accurate information about pituitary disorders and help others to meet “real” pituitary patients. Share solid medical facts, web postings, resources, articles. Don’t fall prey to sharing unsubstantiated information so relying on sites such as PWN can help in this regard. Let family, friends, co-workers know what you are dealing with and about your journey. Within all of our six-degrees of separation maybe connections can be made with someone who can hear the questions and explore more of the answers. Just as many famous and those not so much so are speaking about injustices incurred maybe patients also have a few things to proclaim as well.

If anyone wants to provide feedback to me about my ramblings you can email me: linrio805@gmail.com.

Editor’s note: We have also set up an anonymous survey for you to confidentially answer these question. Unless you provide your contact information, your email and other contact information will remain strictly confidential.  Click on the button below to access the survey.  Thank you.

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 Our thanks to Linda Rio, Marriage and Family Therapists, for providing this critical information and contributing to our publication. Read Linda’s past articles on PWN here and learn more about Linda by going to her website at www.lindamrio.com .

LINDA’S BOOK:  “THE HORMONE FACTOR IN MENTAL HEALTH” IS AVAILABLE THROUGH AMAZON.COM AND OTHER MAJOR BOOKSELLERS.

 

References
Banker, J.E., Burke, Valeras, A.B., & Rio, L. (2014). Hormonal disorders and the therapist: A family systems perspective. In L. Rio (ed), The hormone factor in mental health: Bridging the mind-body gap. London: Jessica Kingsley
Blevins, L. & Rio, L. (2014). Introduction: The Hormone Factor in Mental Health. In L. Rio, The hormone factor in mental health: bridging the mind-body gap (pp.17-37). London: Jessica Kingsley.
Brown, B. (2017). Braving the wilderness. New York: Random House.
Ezzat, S., Asa, L.L., Couldwell, W.T., Barr, C.E., Dodge, W.E., Vance, M.L., McCutcheon, I.E. (2004). The prevalence of pituitary adenomas: A systematic review. American Cancer Society, DOI 10.1002/cncr.20412
Rothchild, E. (1985). Psychological aspects of galactorrhea. J Psychosomatic Obstetrics and Gynecology, 4,2,185-196.
Sobrinho, L.G. (2014). Psychological factors and pituitary disease. The chicken and the egg. In L. Rio (ed.), The hormone factor in mental health: Bridging the mind-body gap. London: Jessica Kingsley.
Sobrinho, L.G., Sa-Melo P., Nunes ,M.C.P., Barroco, L.E., et al (1987). Sexual dysfunction in hyperprolactinemic women. Effect of bromocriptine. J Psychosomatic Obstetrics and Gynecology, 6, 1, 43-48.
Sonino N, Tomba E, Fava GA (2007) Psychosocial approach to endocrine disease. Adv Psychosom Med, 28, 1, 21-33.

© 2018, Pituitary World News. All rights reserved.

1 COMMENT

  1. Hi I enjoyed the article and thought it raised good questions. An improvement I would like to see in pituitary literature and education is that it is almost always focussed on tumors. I have SAI but I don’t have a tumor. There are causes of pituitary dysfunction that are not tumor related. Sometimes, as in my case, there is no known cause. This makes it exceptionally hard to diagnose and we need medical professionals to be aware of all situations, not just tumors. Thank you.

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