What’s Wrong With Me? My Pheochromocytoma Story

For nearly two years of mysteriously worsening symptoms, I had wondered and uttered the question, “What’s Wrong With Me?” Here is my Pheochromocytoma Story…


My Pheochromocytoma Story … of Hope

This is not a personal story to solicit sympathy. With the vast amount of illnesses and problems that come and go in the world, there is plenty of that to go around. Just like all the pages of Own Your Best, I just want to share my journeys (journeys) and raise awareness about the things that have impacted my life (good or bad) in hopes of benefiting others with similar experiences and interests. So this story of symptoms, diagnosis and how I survived a pheochromocytoma is an example that I hope you find inspiration from and apply to your journey.

April 2 is a good day. It is a day that marks an anniversary of a surgery that rid me of debilitatingly mysterious symptoms and rare tumor called a pheochromocytoma (pheo for short).

What is a Pheochromocytoma?

A pheo is a rare tumor that usually develops in cells of one of the two adrenal glands. “Catecholamine-secreting tumors are rare neoplasms, probably occurring in less than 0.2 percent of patients with hypertension. It is estimated that the annual incidence of pheochromocytoma is approximately 0.8 per 100,000 person-years.” (sited from UpToDate.com)

My tumor was on my right adrenal gland. We have an adrenal gland above each of our two kidneys. The adrenal glands are vital to your well-being and they play an extremely important role in producing the hormones that we need, particularly during times of stress, as well as regulate your metabolism, immune system, blood pressure and other essential functions.

It wasn’t until a pheochromocytoma diagnosis was suspected that I had ever given thought to the purpose or location of my adrenal glands (unless I was about to speak in public or fly!). Show of hands if you were just as clueless until now? 🙂

So April 2 represents closure from over 2 years of progressively worse symptoms, sleepless nights, frustration beyond explanation and zero answers…worse than no answers, brush offs from doctors. And all that came along with this – the self-doubt and the polite doubt from my loved ones.


I’ve been hearing from many of you about to my recent article:

How to Stay Positive … When You Feel Like Crap

If you haven’t read it, please take a look and let me know what you think.

What Are Adrenal Pheochromocytoma Symptoms?

My pheo symptoms below, symptoms that would come and go and that I now call episodes, occurred several times per day. My pheochromocytoma symptoms were worse at night usually because I was less active in the evenings. While I’m am saying they were worse at night, it may just be because they were more noticeable and I had more time to obsess about them as well. Although lying down certainly brought symptoms on as well. Overall usually Adrenal Pheochromocytoma symptoms come and go and appear to be unpredictable (until I picked up the patterns).

Symptoms often would taper off within a just few minutes although leaving a mark characterized by intense anxiety, fatigue (both physical and mental) and of course fear.

Common Pheochromocytoma Symptoms

Racing, pounding heart Occipital headaches
Night sweats Impending sense of doom
Frequent urination High blood pressure
Continual state of intense emotion Trembling
Chattering teeth General anxiety

This is not about every little detail of I went through. But reflecting on my pheochromocytoma story is a path to learning from that journey which continues to influence me today. And it wasn’t until I looked back on this time in my life that I fully appreciated the travels.

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Receiving a pheochromocytoma diagnosis and survivor of course was challenging in itself, but just as significant is the mental, emotional and spiritual survival. It’s certainly a little easier to look back now and evaluate things like coping with what was for a long time, the Pheochromocytoma symptoms as an unknown cause of my misery.

Little did I realize at the time that learning how to declutter my mind so that I could focus and prioritize the situation at hand would change everything.

Experience the best Mindfulness Meditation techniques – click here.

But when I was in the moment…in the moments…suffering through those eternal episodes – going through the motions of my life, I had few resources to get me from point A – that being searching for answers – to point B – THE Answer and THE Resolve.


My Pheochromocytoma Symptoms Come and Go…and Getting Worse

Doctors and specialists would come and go. Supportive comments and my trusty cheerleaders would come and go (through no fault of their own). My reinforcements were quieting down; and so was I. Hope was depleting and resiliency was straggling.

So in between points A and B…I was asking questions I was so terrified to have answered? Would this diagnosis be a solution or would it mean I was going to suffer for the rest of my life? Would my children end up without their mom, my husband without his wife, my parents without their daughter…?

In between. I’ve been thinking a lot about that time. Get me through the night. Get me through another day. Get me through work. Get me through – what had seemed to everyone else – an ordinary day.

And in between each ordinary day – find a doctor who can help figure out what is happening to me. 

Was it anxiety?

That was the diagnosis by every doctor and specialist that examined me.

I eat well. I don’t smoke. I exercise. I am of average weight. I am stressed at work. I have kids.

Surely anxiety.

How many times I received the reassuring pat-on-the-back with the “there is nothing wrong with you” speech. The “you’re a busy mom and of course you are stressed out” conversation. And the infamous, “you’re blood pressure is a little elevated, probably a touch of ‘white coat’ syndrome” diagnosis. Off you go with a prescription for anti-anxiety and high blood pressure meds.


The Symptom That EVERY Doctor Missed…

Here is the one symptom – throughout this entire ordeal – I kept describing that no one heard. Although my pheochromocytoma symptoms would come and go, these events…the pounding of my heart and head, and the symptoms mentioned above … occurred while I was at rest and would shift my position. So yes, pheochromocytoma symptoms were even worse at night due to lying in bed. Even a slight, gentle movement would trigger symptoms. I know my body. Thus, I knew something was brewing inside.

How was it when I exercised I felt okay but “at rest” was when I experienced these horrible symptoms? Pheochromocytoma symptoms although they come and go, and are brief (a relative word of course), are also debilitating. They can last anywhere from 30 eternal seconds to several minutes and will leave you with residual tremors and exhaustion.

Wish I had this book sooner!

Again, the stand-out symptoms – the counter-intuitive, tell-tale sign – √ happens at rest…√ turning over in bed, √ leaning back on the couch. Strangely the most ordinary and √ subtle of movements would prompt these intense pheochromocytoma symptoms.

I just desperately needed a doctor to listen and care enough to say, “let’s keep digging,” “let’s not rush to judgement,” “let’s think outside of the box,” “I am not letting you walk out of here feeling unheard.”

As I sat in the chair of my third cardiologist, who had exhausted both of us with a multitude of exams concluding that I have a healthy heart (thankfully) – she remarked, “You know, you should get checked by an endocrinologist. If your thyroid is off, that could cause some of your symptoms.”

More doctors. What would an endocrinologist find? I wasn’t too confident it would be much. Yet what she ultimately discovered was beyond what I had imagined. Still between points A and B, I continued through a series of tests that ultimately sculpted me in to a different human being today.

Fast forward to an endocrinologist, randomly selected and begrudgingly dialed. You know the saying there are no accidents in life?

I eventually settled on scheduling an appointment with this random endocrinologist. I settled on this random and junior doctor at a practice – she was available. And …. she listened. She heard me.

My endocrinologist had a hunch, albeit along with some reasonable doubt she was remiss not to run some tests. The tests for an adrenal pheochromocytoma. She told me not to worry about how to spell or pronounce it, since the odds were (8 in 1 million) slim that I had it.

With more doubt and some pushback was the senior doctor in the practice. A part of me was comforted when he guaranteed that my doctor wouldn’t find it. Specialized blood tests, numerous 24-hour urine collections over a three month period, MIBGs, CATs and MRIs.

We spent over 4 months looking for the pheochromocytoma I surely didn’t have. The word I was told not to Google.


The Best and Worst Day Ever

A last ditch effort MRI revealed the tumor. Finally…

My diagnosis came on Friday the 13th. The best and worst day ever. I was thankful to receive the confirmation that I wasn’t crazy. Yet that relief was quickly replaced with a sleepless night of thinking, “Oh crap, now what?”. This was a bittersweet time for sure.

I don’t know where I’d be today if my endocrinologist hadn’t truly listened – they were pheochromocytoma symptoms.

What if she hadn’t kept digging? I am so very thankful I will never know for sure. My prayer is that anyone in with a similar story will not give up either and Find that Doctor. You simply must…own your journey to truth

This says it all – really helpful!

The more I learned about the pheochromcytoma community, the more thankful I am that mine was diagnosed “as early on” as it was. Others are not nearly as fortunate.

Some patients, sufferers and victims, never find it – the adrenal pheochromocytoma nickname is the autospy tumor (for obvious reasons). For some patients, the pheo is cancerous and since it is so challenging to find and diagnose (as it is an evil imitator of anxiety, high blood pressure etc.), it can metastasize before discovery.

It puts a knot in my stomach to experience first hand the commonality for women often being dismissed in the doctor’s office for these pheochromocytoma symptoms (or any other mysterious symptoms!) that are real and detrimental. I don’t mean to exclude men, I have no doubt there is an immense amount of men and young people digging and searching for answers in their own right.

The point is that it’s up to you to fight for your wellness, in and out of the doctor’s office…to own it.

In the days leading up to my adrenalectomy surgery, I was prescribed phenoxybenzamine to control my blood pressure and prevent intraoperative hypertensive crises. The surgery was a success and I was free to move forward with one less adrenal gland and a new perspective.


Life After Pheochromocytoma Treatment

Pheochromocytoma treatment by way of surgery changes your life. While there’s a substantial physical recovery time, the emotional and psychological recovery takes ample time as well. There are times that I now deal with anxiety. A pheochromocytoma incidence is so rare and it reminds me that I can no longer take anything for granted. This realization has been a blessing and a curse – but mostly a blessing. I avidly work to maintain the highest level of emotional, physical and spiritual wellness possible – and I’m doing damn good at it but it’s a process.

I’ve come to reflect on the medical profession’s philosophy, which almost killed me, to help me navigate life’s mysteries. The head doctor I referred to earlier explained his unsuccessful Zebra approach which is often used to diagnosing patients. Doctors are taught when examining a patient to weigh the symptoms and settle on the most common and highest likelihood diagnosis. Thus this avoids arriving at exotic medical conclusions and running unnecessary tests.

“When you hear the sound of hooves, think horses, not zebras.”

This phrase is commonly taught to medical students throughout their training. In the world of medicine, the term “zebra” is often used in reference to a rare disease or condition.

But there are Zebras out there. So many more Zebras than doctors can imagine.

There’s another misguided approach that resonates with me called the Black Swan Theory. Black swan is often a metaphor which describes an event that comes as a surprise, has a major effect, and is often inappropriately rationalized after the fact with the benefit of hindsight. The term is based on an ancient saying which presumed black swans did not exist, but the saying was rewritten after black swans were discovered in the wild.

So this is for the Zebras and the Black Swans – for those between points A and B. Where A was when you felt as close to normal as anyone could …. to B, the outcome which remains elusive and unknown.


On a side note…

On one particularly mentally exhausting day, my doctor, my hero, promised me one last test. We had exhausted many and, well this is for another story, but during this journey the possibility of thyroid cancer was looming. So I needed surgery soon should the pheo not be found. While in the midst of depression and frustration, a co-worker, who was doubling as a cheerleader (and an admitted believer of the anxiety theory by this point), said to me, “Don’t give up on yourself. You’ve Got This.”

Those words kept me going. They kept me tethered from each stressful moment to the next by only a thin, fragile string of hope. And those words helped me transition from not just saying that I was trying my best to persevere from doctor to doctor and medical website to medical website to find answers – I had taken ownership of my well-being. To Own every thought in my head meant I had to stay in the present and resilient. Own my choices in my pursuit of truth.

Whether your Black Swan is a medical condition, a relationship, a financial hardship, or a spiritual endeavor – Keep Living. Know your body. Keep searching. Write down your symptoms and get loud about it. Keep searching and practicing mindfulness tools to get you through the tough days, hours and even moments. That isolating place at limbo that may be keeping you paralyzed between point A and point B is not forever. Focus on the present moment – it is key survival and ultimately to live your best life possible.

Modern prophet, Eckhart Tolle says, “Surrender comes when you no longer ask, ‘Why is this happening to me?'”


My Pheochromocytoma Story Doesn’t End … for a Good Reason

My pheochromocytoma journey is why Own Your Best was born. Although I would have preferred not to have not gone through this ordeal, I can say without hesitation that my pheochromocytoma story eventually changed the trajectory of my life for the better.  Now, I appreciate the ordinary things and have found awe and gratitude in the present moment. Whether the present moment is on a beach or in a grocery store, on a vacation or folding laundry. I value friendships and family. I also value the fact that others know more than me and I want to know more about that. And I’m so much more aware of and humbled by the silent struggles of others and that I may never even be privy them, even by those of whom I am closest.

I am simply thankful to wake up to new challenges and new chances to live a life of wellness, love and gratitude.

Pheochromocytoma Support Products I wish I had known about sooner. Recommend checking out!

A Simple Guide to Pheochromocytoma, Diagnosis, Treatment Pheochromocytoma: Diagnosis & Treatment
(Click for lower cost options too)
Reversing Pheochromocytoma: Workbook for Healing Patients
Pheo Awareness T shirt
(Various colors available)
Overcome The Disease: Keep Clam & Kill Pheochromocytoma Sling Bag: Overcome The Disease Keep Clam And Kill Pheochromocytoma
     
If you’re interested in learning more, check out this non-profit, the Pheo Para Project. Their mission is to increase awareness of pheochromocytoma and paraganglioma, and to support patients with these rare tumors, as well as their families and caregivers. They also showcase stories made by patients and their families, to provide as much information and perspective as possible about these rare neuroendocrine tumors.

16 Comments

  1. Your story sounds so much like my story! The rapid heart rate, high blood pressure, the shaking, shortness of breath, what I also call episodes that are worse at night with just rolling over in bed or the slightest movement. They only last maybe 15 minutes or so, but they are horrible! One night about three weeks ago I awoke to another episode, but this one didn’t stop. Four hours later I had my husband take me to the ER where another hour passed before they were able to stop it with medication. I was admitted to the hospital for observation and my cardiologist ordered a lung scan to make sure I didn’t have a blood clot in my lungs after what I had just gone through. The lungs were clear, but the top of a large mass was seen on my adrenal gland. A scan of my abdomen was ordered to get a better view of the tumor. It showed a massive tumor growing on my right adrenal gland, down my kidney and liver and entangled in blood vessels. After testing it was determined to be a pheocromocytoma. I am scheduled for surgery day after tomorrow. I am so ready to get this thing out of me and I am so grateful to finally have answers!

    • Brenda – wow what a traumatic ordeal you’ve been going through! I’m so thankful that your pheo was found. It sounds like a common situation in one respect – meaning that pheochromocytoma symptoms often mimic other conditions and manifest in to other serious problems as a result.
      Thank God they caught yours as a result of this!
      Thank you so much for commenting on my article and sharing your pheo story. My hope is that when others visit Own Your Best, they also read the comments from brave people like you and learn about their experiences as well!
      I wish you a swift recovery. You will feel like a new person in a few weeks!!
      Please come back and let me know how things are going when you can.
      My best wishes,
      Maggie

    • Hi Brenda i wish you the best with your surgery.
      I had a 9cm Pheo removed April 2nd 2019
      My story is way too long to type up im going back 10 years.
      I had open surgery and im doing very well 5 months after surgery.
      I wish everyone well who has shared their story, its unreal what a Pheo does to you.
      I would of liked to spoke to someone who has went through this.
      Regards
      Aisling

      aislingdooris.ad@gmail.com

      • Hi Aisling,
        I can certainly see why you had open surgery with the size of your pheo. Now you are on the other side of this horrific ordeal, and I wish you continued healing – both physically and emotionally.
        Interestingly my surgery was also on April the 2nd – although it was in 2015. I too wish I had known about the support that was out there – I had no idea until I started sharing my own pheo story.
        We all have continued healing and good things to look ahead to!
        Stay in touch – warm wishes,
        Maggie

  2. Hi. Just a quick question regarding your tests. We’re your blood tests negative or positive? Why did your dr. keep searching for the pheochromoyctoma?
    My story is very similar to yours. I have an ultrasound Monday of the abdominal area so we’ll see. Thanks for posting your story. I’m sure it has helped many :)-

    • Hi Melissa.
      My doctor picked up on the unusual type of heart racing I was experiencing – along with the other physical symptoms I mentioned – and decided to order a 24 hour urine collection. She really did not even think it was a pheochromocytoma.
      So my bloodwork was generally normal but the red flags in the results in my 24-hour urine (catecholamines/metanephrine) collection results. My Normetanephrine levels were excessively high.
      I am not well-versed in the lab terminology so hopefully I’m “translating” this right! But if you continue testing – the 24 hour urine collection is a must! I did this repeatedly (probably around 4 times over the course of 2 1/2 months). That is what will warrant your doctor to send you for whatever type of scans (CAT, MIBG, MRI, PET) they feel are best to try to locate the pheo (if he/she still suspects it).
      Please feel free to keep me updated – so glad the article resonated with you if it helps with finding answers!!
      My best wishes for good health! Maggie

  3. Hi there – I am
    Going through the process of this currently. Was diagnosed with POTS and my sitting to standing blood test showed high catecohlamines in my blood suggesting hyperadregenic POTS. When I looked that up I saw a main cause Is the type of tumor you described here. Could i get some more information on what MRI exactly they ran that found the mass? It would be so appreciated! Thank you:)

    • Hi Andrea – thanks so much for reaching out and sharing your situation. I looked back on my paperwork and my pheochromocytoma originally showed up on a CAT scan although it unfortunately was not caught until my surgeon went back and reviewed it (already knowing where it would be).
      Among the 4 MRIs that I had undergone, {head, neck, chest…} the one of my Abdomen revealed the 20 MM pheo on my right adrenal gland. So I was extremely lucky on how small it was considering how much damage it was doing to my health even at that size.
      If this is the case for you, I hope that they run these scans and zero in on it!
      Please keep me posted xo

  4. I’ve not been diagnosed but I am now getting some tests after 3 years of symptoms that now seem to fit like a jigsaw.
    Your story hits so many markers for me … I’m 53 and started with the headaches as you described… saw drs but put down to stress, neck stiffness, pillow needed adjusting etc.
    Then 18 months ago after nearly crashing on the freeway I saw a GP and was sent to ER with hypertensive crisis.
    Was told it was malignant hypertension and given medication.
    Role on a year and BP meds have just been increased to cope with unstable BP which is still high but fluctuates to low
    I’ve had terrible stress, anxiety, feelings of doom and dread.
    Had a surgery and was tachycardic in the surgery, thought I was feeling pain so pumped with medication… thinking back maybe it was related ?? I don’t know but I’ve had so many unusual symptoms.
    Headaches like a tight band mainly on waking early hours and feeling wiped out and lethargic
    Anger, irritability put down to ? Menopause?
    I’m hoping I can find some answers as I feel like I’m going mad …. not good for a mental health nurse.

    • Oh Tracy, sounds like you’ve been going through so much. It also sounds like you are a strong and resilient person.
      Pheochromocytoma symptoms mimic so many other issues like anxiety and heart problems, yes it’s very difficult to pinpoint … especially if it’s not even suspected. I hope you (and your doctors) are getting close to making a diagnosis so that you can resolve everything and move forward with your life.
      If you do have a pheo, once they find it and address it, you will feel like a new person. So I will keep you in my thoughts and prayers. Please feel free to keep me updated – I would love to know how things are going.
      All my best xo
      Maggie

  5. I just left my third doctor. I had results in hand and he said everything is normal. He feels the chemistry is off with medication I have been taking for years. I write down these horrible symptoms and they are odd and no doctor seems impressed. The sweating and shakes are horrible. I know I have a benign tumor on my kidney and when I researched it it listed all the things I experience. I want it out but no one will.

    • Hello Laura, I’m terribly sorry you’re going through all of this physical and emotional pain. Sounds like you are being as proactive as possible having just seen your third doctor. Just want to confirm that this, or any of your doctors, is an endocrinologist. Try joining this support group on FaceBook – there are so many people with varying experiences and someone may be able to give you a new direction to go in. I wish you all my best and will keep you in my prayers. Please keep me posted. Maggie

  6. What I am going through just totally echos all that you say here. I call them “episodes” also and not attacks. Isn’t that odd that we both called them that. I cannot get doctors to believe me because my blood and urine tests (just like yours) keep coming back negative. Because of that, they will not order MRI and I will have to do a bankruptcy if I have to pay for one. My mother had pheo and you would think that would be enough for them to continue but it is not. I am getting the “anxiety” thing from pcp. Endo thought it was pheo but quit when bloodwork came back negative. If I can’t get them to order MRI, I will pay for it myself and worry about how to pay it off later but no one should have to beg for care.

    • Hi Leta,
      I relate to your frustration and it brings me right back to my ordeal. Interesting that I didn’t refer to them as episodes at the time, but having looked back on everything is how I recognized that that’s what they were.
      May I ask, did your endocrinologist order the “24 hour urine” collection lab test (for catecholamines and metanephrines)? I’m assuming that’s what you meant by urine tests but just want to confirm. My results were through the roof which was what kept my doctor digging. Shocking that your mom had one and that alone doesn’t warrant continued tests.
      I also went through many prior doctors (like you) until I found the endocrinologist that kept testing and testing. Knowing that even the head of her practice was so confident that I didn’t have a pheochromocytoma, if he were my doctor, I would likely be still walking in your shoes.
      So please don’t give up – continue to see different doctors, demand multiple 24 hour urine labs and hopefully scans as well. I had an MIBG scan which didn’t show the tumor and also had a CAT scan which I found out later did reveal the tumor – however the radiologist missed it. This extended my ordeal of course.
      I’m wishing you my best, positive energy, continued resilience and much strength (which you clearly already have) to continue persevering until you get answers.

  7. My name is Cristy Justice I am 100% sure I have a large Pheochomocytoma having difficulty getting diagnosed in my small town area my symptoms are worse I have been suffering with this for years I am 53 now i also have no insurance and get pushed away like I’m nothing no one believes me help!

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