Managing Hypopituitarism

"Alecia, wake up! Alecia? Come on, it's time for bed - get up!" my husband said as he tried to wake me from a long evening nap.

"Mom...? Are you alright?" My daughter asked with concern.

I sat up and exclaimed, "I'm alright!"

Laughter ensued as my family took a picture. I stumbled through the hallway and collapsed into bed for the night. The following day my husband showed me the photo, and I was mortified (and a bit humored) at the sight of how terrible I looked. It wasn't just that it was apparent I'd been sleeping, and my hair was going in every direction - I could see the weight gain, my swollen eyes, and chubby cheeks from the edema that was part of my daily experience during this time. I was exhausted, and this photo put into perspective the change that was happening as a result of my hormones starting to fail.

In 2016, as hypopituitarism began to set in, I experienced myriad symptoms that initially made diagnosing difficult because they were very general and common. Although my labs kept coming back in the normal range, the results were declining from my previous years and were low-normal. So the protocol was to check hormones every 3-6 months. At each appointment, I explained my symptoms to my endocrinologist, and he listened and was never dismissive of anything I told him. This was especially true when my husband gave insight into what he was seeing at home. At times I found it difficult to articulate precisely the magnitude of the symptoms I was having, so when my pituitary function began to decline, it helped when my husband joined me at my doctor appointments. During one visit, he shared the picture I described above with the doctor to get his point across.

I do not have panhypopituitarism right now, but it is expected in the coming years. I am on total thyroid replacement because my TSH is practically at zero. IGF-1 is still low at 58, and the other pituitary hormones are still being produced (to some degree). My adrenal insufficiency is mild. I only take hydrocortisone as needed right now, such as when I am ill with a fever or have surgery, which is not often. Hormone replacement has helped me tremendously, and I went from complete exhaustion and sickness to feeling 99% normal again.

A few things that aid me in this chapter of living with pituitary disease (besides the medicine):

1. Read, read, read anything I can get my hands on to learn about the pituitary gland's function. The internet is also replete with helpful videos on the gland's function. This way, I can understand what the doctor is explaining when he gives me reasons why or why not he treats me for a symptom or adjusts my medications. Patience and communication is essential. The pituitary gland is an incredible organ (!), and it is nearly impossible to replicate its function perfectly. It takes time for the medication to work.

2. Hearing or reading about another patient's experience is helpful. Support groups, whether it is online or in person, help cope with this disease. I attended a pituitary support meeting in Southern California via Facebook Live this month. Through the years, these support meetings, which are hosted by Sharmyn McGraw, Dr. Daniel Kelly, Dr. Pejman Cohan, and other doctors or professionals at the Pacific Neuroscience Institute, have provided invaluable information and support to patients regarding the treatment of all things pituitary gland tumor. It was great to participate in this meeting from out of state.

3. Running or exercising has been a good way for me to deal with stress and weight gain. Prior to my diagnosis of hypopituitary, I gained at least 20 pounds. Running is something I began to do before and after my 2011 surgery - when I had the strength to do it. Since then, I've been running off and on since then, but I'm exercising more this past year since my hormones have balanced. I've lost some weight as a result. Earlier this month, my family and I participated in a 5K:

Here is an entry in my personal journal I wrote after the event took place:

Tuesday, March 13, 2018

I participated in the BT5K event for the American Brain Tumor Association. For the past few months, I've increased my time and distance on my runs and built up enough strength to join a 5K.  I've been looking forward to participating in this event for years. Unfortunately, the end didn't quite work out as I thought. I was so sore [from running] I could hardly walk the day before the event. I nursed my pulled muscles with ice packs and prayer and purchased a brace to help with the leg and back pain. 

On the morning of the event,  I was still sore but feeling better and determined to run with my music playlist carrying me through the event. I'd never run with a brace before, so it was a nagging distraction because it constantly inched its way up my waist, refusing to stay put during the 5K. As I neared the finish line, my playlist stopped working when I was to exert all my energy and run as fast as possible to the end. I was forced to finish with no music, exhaustion, and the heat bearing down. So I began to think of scripture (Hebrews 12:1-2, 2 Corinthians 12:9) and just prayed. I realized in the moment it was probably good the music stopped because I was more tuned into my increasingly strained muscles and didn't overdo it. Also, I could hear the cheers of the people waiting at the finish line and didn't care anymore about my time, whether I could run or walk - just that this race was over and now I could rest.  

I didn't consider this 5K a race but merely a way to challenge myself to beat or run/walk my usual time for 3.12 miles. My best time when I run at home is 00:38:34, but the day of the BT5K it was 00:42:09. Nevertheless, I'm grateful to have been able to run. I also wanted to support this organization and bring awareness for pituitary tumors and acromegaly. This BT5K was an inspiring event. Hundreds of people showed up to honor a loved one who has succumbed to a brain tumor or currently battling one.  More information about this organization is here: abta.org

Stable Scans!

Redondo Beach, California - August 2017

I followed up with my neurosurgeon in California last summer and my MRI report says there is no evidence of recurrent disease. Regarding certain areas where tumor remained, the report states, "Previous tiny hypoenhancing focus along the right sellar floor is not seen on today's study." Any residual tumor that is present is still stable and/or continues to shrink. I am still on a 3-6 month recall with my endocrinologist because my pituitary gland's function is slowly diminishing. Hormone replacement is adequately helping me feel completely normal. I'm grateful for my progress and the doctors who helped me get to this point! In March, I will be participating in the American Brain Tumor Association's BT5K to show support for people diagnosed with brain tumors. This is something I've wanted to do for years. Thanks be to God that I can run/walk in this event!

Hope in the Midst of Grief

Through the years I've found Nancy Guthrie's story to be a source of consolation when dealing with grief. Her book, O Love That Will Not Let Me Go, is something I kept my nose in when I was going through radiation treatment. Sitting day after day among patients battling cancer was an emotional time and gave perspective on how fragile life is. In this video, Guthrie discusses her life experience of losing two children after birth. Although her story of suffering has not come from a pituitary tumor, her message may be a comfort to anyone who has lost someone they love.

Video not working? Here's the link: Hope in the Midst of Grief

TEDx Video: Proton Beam Therapy

TEDx Talk - Scott Hamilton on Proton Beam Therapy (Sept. 2015)
Having received Proton Beam Radiotherapy in Houston, TX, I found much of this TEDx talk to help me understand how proton radiation works. In addition, Scott Hamilton's story about living with cancer and his pituitary tumor is inspiring. Read more about it here: Scott Hamilton Cares.

Five years have passed since my radiation treatment at MD Anderson Cancer Center. My vision and hearing are still intact. I will be traveling to California this month for a MRI and follow-up with my neurosurgeon to determine the status of my tumor. My last scan was in 2015 and the report suggested my tumor was shrinking. As expected, my pituitary function is failing because it was in the field of radiation, but my quality of life is still good on hormone replacement. I am hopeful the news is the same and that the proton treatment I received successfully stabilized my tumor.

*Note regarding a comment in the video about insurance coverage: After my brain surgery in 2011, I had residual tumor growing less than 2 mm from my optic nerve, so the risk of going blind was high. My insurance carrier required a need for proton beam vs. stereotactic radiosurgery or radiotherapy. Initially, they denied the coverage for proton radiation; however, I petitioned, and they reversed their decision after my oncologist further explained the benefit of this type of treatment when a tumor is near the optic nerve.

Growth Hormone - Should You Replace It?

If you have not heard of or visited the Pituitary Network Association's website, I would encourage you to do so and keep it on your list of resources. Periodically PNA hosts webinars featuring doctors specializing in treatment for diseases of the pituitary gland. Here's their most recent video on growth hormone deficiency. This webinar is insightful regarding the power of growth hormone and its tremendous effects on the body.

(Video length is 1:20:49 - Q & A begins at 47:57)

Link: Growth Hormone Replacement: Not Just for Kids?

Not Alone

I found this story on the National Brain Tumor Society's blog about a brain tumor survivor and found a song he wrote to be encouraging. Pituitary Tumors are not typically cancerous, but after two brain surgeries and six weeks of radiation treatment, there's a lot in the words of this song that's still relatable.

A quote from the blog post:

"I want other cancer survivors, patients, and caregivers to find hope, courage, and inspiration from 'Meant to Live' and my journey. My journey against this cancer is far from over, but I do know that I have already beat it, regardless of what it does to me moving forward. This is because of how I have lived after I was told I have cancer and will continue to live knowing it is prevalent in my life. Different people have different ways of responding to such a crisis, but I do know that in order to be successful with anything, your mindset must be in a forward, positive direction that leaves no room for negativity. You must make the best of the hand you have been given. A little faith goes a long way as well."

Link: Meant to Live - Zachary Williams Story of Thriving Past Survival 

Even If

Philip Yancey's book Where's God When it Hurts? was a tremendous encouragement to me in the months following my brain tumor diagnosis in 2005. I recently read that he was in a major car accident in February 2007. He recounts his story on his website here: A Brush with Death.  "Epilogue to Prayer: Does It Make Any Difference?" is a good reminder that life is fragile, we know not the moment we will draw our last breath, and God controls every detail of our lives. He is not my genie in a bottle. No! He is sovereign and sees the beginning from the end - working all things for the good (Romans 8:28-39), but this is hard to grasp in the midst of seemingly unfair circumstances. In addition to my ongoing health issues, this past year and a half, my family and I experienced some unexpected tragedies which involved the death of two loved ones.

In the summer of 2015, my oldest daughter lost her best friend and husband-to-be in a freak accident while he was visiting friends in Washington state. She describes on her blog what happened the day she found out he died:

Wednesday, August 12. 12:15 p.m. (CDT) Forty-five minutes before his death. "We're heading out to deception pass. I don't know what it is - maybe a mountain or something. Anyways, I'll try to call you later, hopefully not too late." This was the last text he sent me. Short. Simple. 

 1:30 p.m. It was just an ordinary summer afternoon - Scott sent his daily text to check on me; I was taking my lunch break in the middle of my history test; and I went to Bahama Bucks with my mom and siblings for some refreshment. Life was normal. Life was good. Scott would be home in only 4 days and I counted them down as each one was passing. . . 

1:45 p.m. We were driving home and passed a car accident when mom's phone rang, but the call was missed. Then mine rang, and the call was missed. Scott's mom and sister were supposed to be in our area that day. Thinking maybe something happened...I called Scott's mom back to receive a response that left me uneasy, "I just called your dad. You need to call him." We turned around to park in a parking lot across from the accident.  I called my dad and the first thing he told me was, "There's been an accident." My initial thought was, "Someone is in the accident in front of us." It was then that my dad's words cut through me like a knife. "It's Scott. He passed away. He's gone . . ."

Raw. Cruel. Gut wrenching. Lights were flashing and sirens sounding. Scott was gone. Gone from this life. He wasn't coming back.

He had been hiking at Deception Pass with his brother and friends. Along the trail, on their way back up the island's rocky cliffs, Scott decided to get one last look at the breathtaking view . . . from what he thought was a safe spot on the branch of a Madrona tree. Nothing could've made any of the guys think that Scott would breathe his last on this island, or that they would make desperate attempts to try and revive him from a freak accident. Nothing could've prepared his family and I for the news of his passing. But it was God's will, under His timing, in His control, and in His hands. God blessed Scott with a gorgeous view of earth's paradise while doing one of his favorite things, before the branch broke leading to his sudden and instant departure. Only seconds later, Scott's next breath would be taken in pure heavenly paradise and in the Lord's glorious presence. 

He was only 18. He had a full-ride scholarship. He had a steady job. He had his life planned out. These things are what people look at, and say "he was too young". These are things that still put me in confusion. Confusion on how such achievements were made, and how he never got to experience the rest of what should've been 60-80 years of his life. It was too early of a cut-off . . . to us, but not to God. I still try to wrap my brain around it, but in reality I cannot. I may never be able to understand until the day I arrive at Heaven's door...  

The months following Scott's death were intensely grievous (still are at times). Why did this have to happen? We were still reeling from this tragedy when I received a phone call a few months later that my father had died in a motorcycle accident. It was the day before his 69th birthday. He was literally in the middle of planning a trip to Texas to come see us! I was going to call him on his birthday, and we were going to firm up the plans for his visit. But no, my dad was gone forever.

Fishing was one of my dad's favorite things to do with my kids when he came to visit from Oregon. They always caught tons of fish from a nearby pond in our neighborhood, but I rarely did - no matter how many times I tried. The last time I saw him and the last day we spent together, he took his grandchildren and me fishing.

Typically the only fish in this stocked pond is perch - lots and lots of perch. However, on this day, my youngest daughter caught a big catfish that broke the line as she and my husband were bringing it in.

A fish story from Sept. 2014: "It was this big!"

From then on, my family raced to see who could hook the biggest fish. They continued to lure more perch and, as usual, I was left with nothing.

Everyone was cleaning up, and we were about finished when I grabbed the last worm hoping maybe this time I might hook something for once. Determined, I cast my line and began to pray that God would help me catch the catfish. Within moments the line pulled, and I shouted for joy at the sight of the answered prayer, "I caught a fish...a catfish!"

Little did I know at the time how much I would need that fish to remind me that the Lord does hear my prayers...no matter how small. Here is the last picture I took with my Dad:

My daughter continues on her blog regarding Scott's passing:

God only knows how many times I have cried, I have prayed, and I have pleaded for strength . . . the strength to go on, with Him as my light, when it seems as though all the lights of life have gone out. And each day I have received strength in different ways - it's not always the same. It's all part of the struggle of death and the wrestling of sorrow in the heart. Grief is a process. It is painful. It is hard. It can be lonely. And it is slow. Each person grieves differently and at their own pace. You may have people tell you "It will get better" or "Oh, the pain will all go away soon". In reality, the hurt will never really go away. It may lessen over years, but it'll never be fully gone. Life will still move, and you have to learn to move with it. The raw wound will ever so slowly heal . . . but the scar that came with the brutal separation will never fade. If you have scars, value them. Each one holds a memory. Each one is important. They are building blocks to your life. Let them remind you of who holds you in His hands throughout the waves and storms of life. Let them remind you that the trials of life that left the scar(s) are what remain after you have had the perseverance that He helped you to pursue. . .God will carry you through the pain, the struggles, and the heartache - just as He continues to do so for me.

Ongoing challenges accompany these hardships as we try to move forward and adjust in the aftermath of it all. Even still, I pray and thank God for his sustaining grace and good memories when they come.

"I know You're able, and I know You can save through the fire with Your mighty hand - But even if You don't, my hope is You alone...It is well with my soul." - Mercy Me 

Another Chapter Begins: A Crisis and the New Normal

(Information about Secondary Adrenal Insufficiency begins at 2:30)
I began seeing a new endocrinologist two years ago, after my local doctor unexpectedly left the medical field. Most endos in my area are focused on diabetes or thyroid disorders and pituitary specialized endocrinologists are hard to find. So, reluctantly, I traveled back down to Houston, hoping that the new doctor I'd chosen would be able to help me once my pituitary gland showed signs of deficiency. The timing could not have been better.

During the first few appointments with my endocrinologist, he took inventory of all my symptoms and baseline lab results - most of which were rock bottom low and barely in the "normal" range. He also ordered a baseline ACTH stim test that returned to the normal range. I found it helpful to provide him with a graph of my previous labs from years past since I was a new patient to him. It was a useful communication tool when speaking about my history. I'd been having symptoms of hypopituitarism for about a year, but it was not reflected in my labs, so he assigned me to a three-month recall.

Last summer, my diagnosis changed when I met with my doctor to review my routine lab work. The first clue of hypopituitarism came when my previously stable T-4 labs showed a pattern of decline while my TSH was unchanged. The curious thing about this, the doctor said, is that when the T-4 goes down, usually the TSH will begin to rise. This was not happening in my case. He suspected my pituitary function was deteriorating and suggested I start taking thyroid medicine, and sent me for another ACTH stim test. The results revealed I have adrenal insufficiency (secondary).

I became ill with fever from an ear infection within a month of receiving this diagnosis and was in the ER for an ovarian cyst rupture (both happened the same week). Since I was new to treatment for adrenal insufficiency, I didn't updose sufficiently as I should have for sickness. As a result of this, I went into an adrenal crisis. I told the ER staff that I was newly diagnosed with AI, but they did not administer steroids. Although I was still very ill, I was released to go home after I received pain medication and x-rays. Within 30 minutes, my blood pressure plummeted to a dangerously low level, and I began vomiting and could barely walk and talk. My husband drove me back to the ER, my endocrinologist was contacted, and I was given a hydrocortisone bolus.  I stayed overnight as a precaution since this was my first encounter with an adrenal crisis.

So now begins the journey of living with adrenal insufficiency and adapting to medicating myself amidst life's unpredictable moments of sickness or crisis. I expected this to happen years from now. But, of course, I understood it was impossible to say what order my hormones would decline, but I thought I would have more time. I didn't expect adrenal insufficiency to be the first thing I'd get diagnosed with. On a good note, though - what a difference the medication makes! I feel normal again. My energy is good, and, most importantly, my mind is clear. I do have bad days, but thankfully they are few.

The past few months I've been adjusting to the new daily routine of hormone replacement and wearing a medical ID bracelet. My adrenal glands still produce some cortisol, but it is a meager amount. The medication is helping to restore or maintain a balance where my pituitary function fails.

Even Still, I Am Well

"I am well."

These are the words I say when I'm asked, "How are you?" I decided this would be my steady reply to any who would ask because if I were to say how I am really doing (health-wise), there would not be enough time in that moment to answer in detail.

For the last ten years, my posts frequently included a victorious shout, "All hormones are normal!" Now, this is changing - but why complain? After all, my tumor is shrinking, and hypopituitarism is treatable. I don't know how to write without sounding upset or defeated. I know this is really common, but I'm disappointed. Before I began radiotherapy, I was told my hormones would decline due to the treatment, but I remained hopeful (or in denial). After all, my gland survived two major surgeries, and I thought maybe Proton Beam Radiation would somehow make a difference in the longevity of my pituitary function, too. I remind myself this was not the reason why I went to MD Anderson, for it was the tumor, not an excess hormone, that threatened my vision and the structures in my brain. At least, it appears the radiation treatment was not all for naught and has shown to be effective in stunting the growth of my tumor. Also, I can safely say I am in remission from acromegaly (I have been for years). My IGF-1 level, now 58, continues to drop, so at this point, it appears I will not have to deal with excess growth hormone again. Ironically, now GH deficiency is a concern, but I will not be taking GH replacement.

When I joined a pituitary group several years ago, I read stories from people regarding a delayed diagnosis of a pituitary tumor and the difficulty of living with hypopituitarism. Yet, I could not relate because my hormone levels were normal. I wrote about the fear I had anticipating brain surgery. Never mind how benign, and treatable a pituitary tumor is; the thought of a knife going into my head was terrifying. But, hypopituitarism was not on my list of troubles. For anyone new to my blog, I recommend joining a support group or keeping a journal about your experience. One of the things I appreciate about the Acromegaly Community and other pituitary groups is how many people from different walks of life can come together on this topic of pituitary disease and connect with the idea of bringing awareness and helping others. There is a common thread of struggle and empathy among pituitary patients. I've learned a lot and am grateful for those who have shared their stories (AcromegalyCare) and the doctors involved in support groups like the Pituitary Network Association. Their encouragement and resources have enabled me to deal with what I'm experiencing today. Their knowledge has given me the ability to communicate with my doctor and understand as best I can what is happening with my health (Informative video - "Understanding Hormones and Their Effect on Quality of Life").

I'm still running a couple of days a week, and overall, I feel alright despite the changes. The hormone therapy helps my energy level. My kids and life, in general, keep me active and busy. I remember where my heart was at the beginning of this journey, after my first brain surgery in August 2005. I am thankful to God for carrying me through and reassuring me by his Word that even if my tumor grew back, and all efforts to save my pituitary gland failed, his grace is sufficient (2 Corinthians 12:9). In this promise, my hope remains. Listen: Why Suffering?

"When peace like a river, attendeth my way, When sorrows like sea billows roll Whatever my lot, thou hast taught me to say It is well, it is well, with my soul..." - Horatio G. Spafford

Update - Ten Years Later

It has been a while since I've written a lengthy post. I appreciate your concern for any of you checking my health blog for updates. This year marks ten years since I was first diagnosed with a pituitary tumor.

The protocol since my radiotherapy in 2012 has been to monitor tumor growth via MRI and pituitary function through lab work every six months. Instead of returning to MD Anderson Cancer Center this year, I followed up with my neurosurgeon in California. The MRI report describes the residual tumor in my left cavernous as inconspicuous. When comparing the results to previous MRIs, it appears to have melted away (time will tell if it has). There is still a remnant of tumor on the right side of the sella floor that is visible, but this, too, is shrinking and possibly half the size it was before radiation. The tumor is responding to proton radiation treatment.

 My pituitary gland does not look normal, though it hasn't looked normal for some time. It is still functioning even though it is smaller and flat on the sellar floor. Apparently, the position of the pituitary is irrelevant so long as the labs continue to show the gland is functioning fine. As of today, this is the case. I still retain the complete gland function and am not on any hormone replacement now. My prolactin level continues to climb but remains within normal limits (high normal). I don't know when/if or which hormones will take the plunge first, but there is a hint that my gland may be struggling; my last IGF-1 was 66. After radiation treatment, my IGF-1 was 190. Since then, my level continues to drop and  stay below 100 this past year. For the most part, I don't feel different post-radiation. The main symptoms I've had since my treatment ended are increasingly low energy and mild weight gain. My headache problem is gone. I don't think the lower growth hormone level entirely causes fatigue or weight gain. It could be a contributing factor, but it's only one of many. Other causes could be age, stress, lack of exercise, and diet.

In May, my energy returned, and warmer weather settled in. I'd had enough of the weight gain and was determined to implement changes to my daily routine and began running 2-3 days a week. Also, I cut back on the number of carbohydrates I ingest. The simple changes I employed made a difference and are helping. I've lost over 10 pounds since June and feel pretty good these days.

I follow-up with my endocrinologist in a few weeks and will continue to do so every six months. I do not have to return for a MRI for two years.