Hypopituitarism – A Loss of Identity

As I write this I am sure there may be some other patients that will disagree with me.  One of my challenges throughout this illness has been figuring out who I am now.  I read a description of a person with a chronic illness as forever walking down a dividing line between the past and the future. Looking backward, he can see everything the illness has taken from him or has forced him to relinquish. Looking forward, he can’t see anything quite clearly. There’s no going back to the past, and the future is uncertain.

My story is my own and I accept that some of the things that define me now are not the same as others following their own path.  For me, my life changed a lot during this illness. Being misdiagnosed for many years, as many others have been, we either dealt with the symptoms, or we sought out medical advice to find the answers.  With a non functioning pituitary tumor that took years to grow, the changes in me happened so gradually that for most of my friends and family, they didn’t notice.  It wasn’t until the last couple years that people could say they actually saw the changes in me.  Changes that I didn’t notice myself.

Loss of aggression was one of the first major clues.  Which sounds OK but in the construction business world you need aggression to deal with consultants and contractors on a daily basis.  Loss of sex drive.  This happened really over a couple years on a slow decline until i felt I was no longer functioning as a man or husband.  It was the most difficult thing to admit  and what finally got me to see my doctor.  It was then that I was told at the age of 44 my testosterone was nil.  The good thing was my doctor did not just prescribe me testosterone and leave it at that.  He said to me, yes your testosterone is nil but we need to know why.  Thankfully he sent me to an endocrinologist that completed the testing and found the golf ball tumor on my pituitary gland.  Anyways you can read about all that in some of my previous stories.

For 12 years before being diagnosed I pushed my life to forward my career and provide for my family.  I spent 70% of my working life traveling on the road for many years.  In the last few years, I had worked my way to managing those people that would now spend their days travelling, and I had the chance to slow down and spend time at home.   I had built an addition on the home for my wife to build her own business.  Our future was planned and I had goals and dreams to pursue. We had been married for 22 years when the tumor diagnosis was found.

I wrote this to discuss the loss of identity. During the last, I would guess, two to three years before diagnosis, I made many mental mistakes with my life.  I began to lose who I was.  I can blame my hormone levels for being in the toilet if I choose.  Really I don’t know.  I gave up a career because I was struggling mentally but didn’t know why.  I assumed I needed a change after so many years so I decided to start my own business. My marriage struggled.  The mental challenges continued during this period until being diagnosed six months after giving up my career.  They say everything happens for a reason…I am still trying to figure out the reasons.

Six weeks after surgery to remove the 4 cm tumor from my head, my wife tells me she wants a divorce.  It destroyed me.  I would love to tell everyone that I took it like a man and sucked it up and moved on.  Truth is, being deficient on all hormones, adrenals, thyroid, growth hormone, sex hormones…I was a basket case.  It was at this point that I lost who I was. Along with my identity, many other feelings came across. A loss of comfort, sexual function, career, income, self-efficacy, freedom, cognitive function, intimacy, pride, joy, self-esteem, self-control, independence, mental health, hope, dignity, and certainty. Over the last couple years I have felt these over and over again.  Sorting though the grief alone is a tremendous challenge.

Until you yourself live through a complete hormone deficiency, you will never understand what those effects have on a person.  My endo tried to describe it when replacing all these hormones synthetically that it was like going through a medically induced depression, puberty, menopause, and a mid life crisis  all at the same time.

When you go through a tumor in your brain, many people you thought you were close to will step away.  They don’t mean to be rude or not sympathetic but they don’t understand and it puts them face to face with their own mortality.  They do’t know how to face you or what to say.  Going through this tumor, plus a divorce, seemed to disconnect me even further.  I went from the career guy with family and lots friends to the sick separated guy feeling alone and on my own to deal with this.  I know people going through divorce normally go through some of these feelings.  It was just magnified for me with the illness.

It was something that everyone I knew would never understand.  You tell them it’s hypopituitarism and you get the blank stare.  I was no longer the person that they used to know.

It has been almost three years now, since my original diagnosis.  Tumor was removed in Oct of 2013.  It has been two years of trying to synthetically replace all the hormones that others create on a regular basis but we have to balance and figure out correct dosages regularly.  As much as I have tried to explain to family and friends, they will never truly understand what we work through daily.  Yes…”I am fine”…I tell them.  “All good!”  What else can I say?  I don’t want their pity and I don’t want them to watch me struggle.  It’s written on the inside of my face.  For people who are hypopituitary, our losses are multiple and permanent and therefore difficult to explain. They are infinite losses that will effect our quality of life forever.

Well-meaning individuals, whether friends and family or even doctors can make it more difficult. Some may try to add a helpful perspective by saying, “It could be worse” or “You look fine!” All these statements do are invalidate our physical and emotional challenges.  It is very dismissive of the pain we are experiencing and the type of grief we are trying to manage. Everyone has a right to how they feel, and for us we just say, “It could be better.” There’s also a lot of pride in those of us with chronic illness and it makes us reluctant to ask for help from friends or loved ones.  Sometimes we live in denial about our own limitations.  We often retreat from our social networks, leading to poor social support. Our relationships will often suffer as we become more and more isolated. The depression can worsen to the point where some hypopituitary patients become actively suicidal or passively suicidal or just stop taking care of themselves in any meaningful way.

I gave up a while ago trying to explain the bad days because I really can’t explain them to myself.  I am glad they have become fewer and further between than before.  But how do you even try to explain when hormones are out of whack one day, but good the next?  You can’t explain what its like to have your brain in a fog, pain in your body, emotional disconnect from others, a want to just be alone and a want to just be with someone that understands.

I have forgotten much of the year during diagnosis and have been trying to rebuild since then.  I truly don’t believe all of the pieces are back in place yet. I am doing my best to move forward anyways but have yet to truly define or figure out who I am now.  I know I am no longer the same person mentally that I was before this tumor.  I seem to remind myself on a daily basis of this.  It doesn’t make me less of a person.  I probably help more people now that I ever did before because after going through this we find a connection with others that we never had before. My challenge is finding connection outside the illness itself.

In reviewing the psychology of this illness, I came across Maslow’s hierarchy of Human needs, he used the terms “physiological”, “safety”, “belongingness” and “love”, “esteem”, “self-actualization”, and “self-transcendence” to describe the pattern that human motivations generally move through.

What he says is there may not be any physical indications, but if a person is not meeting the most fundamental “physiological” needs as mentioned above,  and “Safety” we can go through anxiety, tension and depression. The next most basic level of needs, Maslow called “deficiency needs” or “d-needs”: love, belonging, esteem, friendship, and physical needs and finally self actualization.   Maslow’s theory suggests that the most basic level of needs must be met before the individual will strongly desire (or focus motivation upon) the secondary or higher level needs.

When you think about most of us that are diagnosed hypopituitary, we spend a countless amount of time searching and trying to understand our illness.  Trying to find answers to why and what is causing all of our challenges.  This is all part of the physiological state. Our next phase is security.  Whether that be in finally finding a balance with hormones or finding a doctor/endocrinologist that understands or is willing to listen or help.  Or having a partner or family member that is by your side for the duration and willing to love you no matter the challenges.  Or just a feeling of finally understanding our own illness and how to read our own bodies needs.

Finding the next step for me has been difficult.  A “love/belonging” or need.  The belonging or need came through the support groups.  I found peace and understanding with those going through the same as myself.  Helping others going through this illness as I have, became what drove me day in and day out.  But I am not fulfilled.

But I find myself still in this stage.  Somewhere trying to sort out love and passions.  What does it mean? What does it feel like? Why don’t I feel this?  Why is there such a disconnect? Somewhere between here and the next stage, working towards my own self esteem, is where I seem to be stuck.

The human mind and brain are complex and have parallel processes running at the same time.  Maslow said that the different levels of motivation could occur at any time in the human mind, but he focused on identifying the basic types of motivation and the order in which they should be met.  Once we find that level of esteem again, we can move into the Self Actualization stage.  Not everyone moves to this stage.  Some choose to stay at the point that they have great self esteem and that is an amazing place to be.

“What a man can be, he must be. This need we may call self-actualization…It refers to the desire for self-fulfillment, namely, to the tendency for him to become actualized in what he is potentially. This tendency might be phrased as the desire to become more and more what one is, to become everything that one is capable of becoming.”

Self Actualization. To me this relates again back to finding my own identity. It’s no longer about comparing myself to who I used to be and trying to get back there again. I can only hope that one day I will be happy and find that new identity.  I have to learn not to curse the storm but instead to learn to dance in the rain!

 

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What am I grateful for?

October 7th.  It is hard to believe it has been one year since the tumor was removed from my head that a few times hemorrhaged and almost killed me.  After six years of my health on a slow downhill slide, it sure feels good to be working my way back up the hill.  I am not there yet, but the top is visible with no fog surrounding it.

There is so much I still cannot remember over the last couple years and it may never come back to me.  A year ago I could not see how I was ever going to feel better.  Hell, six months ago was still a daily struggle.  People have asked me if I am back to “normal” yet.  I don’t know how to answer them.  It was for so long that I didn’t feel “normal” that I really don’t know what that means anymore. When is good enough…good enough? I can say am doing very well now and feel better than I have in years. I talk to so many others that are still fighting this illness so I am thankful every day.

They say everything happens for a reason.  I don’t know what that reason is for me yet. Maybe one day I will find it, maybe not.  I will take things as they come.  This illness that took so long to diagnose changed my entire life in the blink of an eye it seems like.  There were times earlier this year where I could not find my dreams, my goals, or myself, and I didn’t even know who I was anymore.  I was truly lost.  It is so hard to explain how dysfunctional a mind and body can be without having your natural hormones anymore.  In my case I now take four different manufactured hormones and finding the correct balance was a challenge.  There are also some hormones that are not replaced because the medical field does not know enough about them yet.  I also never realized how some people will assume, fear, judge or treat you when you have an invisible illness or an illness they don’t understand.  Thankfully my family and closest friends were there for me when I needed them.

Throughout this illness I have learned a few things.  Life is about overcoming obstacles and circumstances that are in or beyond my control.  It’s about making the most out of my relationships with family and friends, new and old.  It’s about finding my passion and the meaning in my life and doing everything I can to show that meaning to others and live that passion every day.  It’s about finding that person that will love me unconditionally and loving them back the same way no matter what the world throws at us.  It’s about forgiveness, and giving, helping others, and the notion of paying it forward.  And it’s about keeping things simple, laughing, and having fun.

Today I am very grateful for so many things.  I am still learning, searching, and a work in progress.  Honestly… this last year has taught me so much that I hope I always am!

Can you really see me? – The Face of Hypopituitarism

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Can you really see me?  We have all seen the look.  You tell someone you are hypopituitary and they get this look of confusion on their face.  “But you look fine”. Most people have never heard of it before.  Honestly I had never heard of it until being diagnosed.  It is an invisible illness that we feel on the inside.  The chains, ropes and cables that hold us back from who we used to be. Hypopituitary means our Pituitary Gland is no longer functional so we don’t create all or most of the pituitary hormones that people need in their daily lives.

For me this is still all very new.  Diagnosed almost a year ago with a golf ball tumor inside my head that was crushing my pituitary gland.  Surgery to remove the tumor in October.  It is June now as I am writing this and it has been a battle with the medical system to get all of testing required to get to where I am today.  You see, we have to artificially try to replace all of the hormones we used to have now.  It is a forever balancing act with our hormones and will be for the rest of my life.

So what exactly do people not see in us from this illness?  What is it?  Maybe you have heard of Addison’s disease, or Adrenal Fatigue.  How about Hypothyroidism or Hypogonadism?  Possibly Growth Hormone Deficiency.  Have you heard of Diabetes Insipidus? Maybe you know about Beta Endorphins, Melanocytes, or Oxytocin deficiencies (which even our medical system does not fully understand yet).  You see, all of these illnesses are each caused by one hormone being deficient in your body.

For some people living with just one of these conditions is challenging enough. For those of us that are hypopituitary, we live with all or most of them every day.  Every hour of every day we analyze how we feel and have to think which hormone is causing the issue today that needs to be medically adjusted to help us feel better.  The symptom list is massive and can change depending on which hormone is causing the symptom that day or what life challenges we face.  In people who do not have this illness, your body makes these adjustments hundreds of times per day automatically.  The tree of symptoms above that I created gives you a rough idea what we may go through. Sometimes these symptoms go away only to come back again stronger than before.  Its a forever balancing act.

We hear it all the time.  “At least it’s not cancer”.  “There is always someone worse off”.  Yes you are right but in our minds that belittles the daily struggle we have.  I have heard it from others like myself.  If it was cancer at least we could make the choice to fight it.  We may win or we may lose but we can fight.  We have to deal with what we cannot fight.  We wonder every day if the tumor some of us had removed is going to return or regrow.  For many of us the tumor grew so gradual over years we did not see the changes it made to our health, our personality, our mental state.  Now we look back and wonder who we used to be and when did we really change?  When was I actually the normal me?  How will I ever know if I am normal again?  What is it even like to feel normal?

For many of us with this illness we become obsessed.  I see it in the forums and Facebook groups every day.  We obsess about everything we feel, every new symptom, and wonder if it is related or how to fix it.  The obsession is part of the illness and many don’t even know they are distancing themselves from the family.  The want and need to feel better is powerful.  Feeling exhausted and tired of fighting every day wears on a person.  The problem is the obsession we have drives us away from our family, friends, new relationships and our lives.  We hide from the world in hopes we get back to some reality of normal.  Many live with fear, anger, anxiety and depression.  Because our illness is invisible, many of our friends and family will distance themselves because they don’t understand.  In reality this is the time that we need these people the most.  We need them to understand and we really need their help.

To use me as an example, I wake up every morning and take my thyroid meds first thing on an empty stomach.  I go for a shower and after I apply my Testosterone. I will be switching to injections soon so I will also have to take another medication to ensure the testosterone is not converted to estrogen. An hour after waking up I take my large dose of adrenal system medication with food.  I need this one to survive daily.  Without it I would fall into adrenal crisis, a coma, and then possible death without emergency treatment.  This medication has an eight hour life in my body so I know when I start to get low.  This medication I take three times a day.  At night before bed I inject for growth hormone.  This is the standard day for me not including vitamins that have to be carefully sorted around meds to not interfere.  I use alarms on my phone to remind me of each.  Luckily for me I no longer have Diabetes Insipidus so that’s one less medication off my list.  In the last six months I cannot even count how many blood tests and medication dosage or brand changes I have done. There will be eye testing and MRI’s consistently for a while to watch for growth.  

Through the forums I have met many people that have had to change careers because they can longer function at the same capacity they used to.  There are those that cannot be around groups or out in society because of anxiety.  I have met those being treated for depression.  Patients that this illness has caused separation and divorce. People who are lost in the medical system fighting for a proper diagnosis or just for basic medications because they have not found the right doctor.  Those that are fighting their insurance companies because they will not cover the cost of the medications we need so they go without.  And I have seen the face of death and suicidal thoughts from some because they cannot take it anymore. 

I chose to advocate and spend time listening and helping those going through this illness as best I can.  

These are faces of the people with Hypopituitarism.  Can you really see us now?

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.

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.