I have a pheochromocytoma, and it really, really sucks. I’m writing today from deep in an episode. My hands are shaking so much that it is taking some time to type the correct keys, and my brain feels extremely wired but it’s making it hard for me to keep one single train of thought going for too long.
Today is probably my last acute episode. They tend to happen every two months or so, and I’m 27 days out from surgery. [Insert dancing and shouts of “Hallelujah!” here.] I just absolutely cannot wait to have surgery, and I know I’m going to be okay. But today isn’t okay.
It’s actually loads and loads better than what it used to be when I’m in the acute phase. Medication is doing its job. But with some 20 times the normal level of adrenaline coursing through my body, medication can’t prevent all the symptoms.
It took me a long time to get a diagnosis, and I haven’t been able to find a whole lot of people’s stories online. But the ones that I’ve found and read have given me a sense of solidarity, a sense of understanding I’d been looking for. So I thought maybe I’d write a bit of my own story here, and maybe someone will find it and it will give them hope.
My story actually stretches back to about four years ago. Somewhere around there, I started having these weird moments where I would wake up feeling shaky and with a weird feeling like a pit in my stomach. I thought it was low blood sugar. I would eat, and the feeling would eventually go away. I told my doctor, and she had me do a fasting glucose test. It came back as normal, and she told me I was fine. That was the end of it.
I kept having the feeling, though. Eventually it wouldn’t really go away after I ate. Then in June 2018, I woke up with it, went to school and taught all the way through it, came home, and threw up. And threw up. And threw up. And then in September, the same thing – only with chest pain and a sense that my heart was pounding. When you work at a school, there’s pretty much always some kid who’s going home because they’re throwing up. It’s pretty easy to blame it on a stomach bug.
But then the same thing happened in November, and I realized this was a pretty solid pattern. I took myself to a hospital ER, where two nurses and a doctor suggested that I was having a panic attack. The doctor actually came back and apologized when he saw my lab work – my results all showed something very wrong and he told me apologetically that they wouldn’t be able to discharge me. I cried both out of relief and frustration – it was the day of parent-teacher conferences and I didn’t see how I should have to miss those… I knew that if the pattern continued, I would actually feel okay again in a couple of hours. Okay, more like most of the day.
I ended up being transferred to another doctor who was very empathetic and who I felt really listened and asked thoughtful questions. With the vomiting, pain, and high levels of inflammation from my bloodwork, she suggested gallstones, and I was eventually given an ultrasound which confirmed that I do have a gallstone.
I left the hospital with a sense of relief, booked an appointment with my family doctor, and discussed a referral to a surgeon. I couldn’t believe how quickly that referral happened, and I went to the surgeon with nervous excitement. He looked at my labs, asked me some questions, and very quickly told me that my problem was not gallbladder related. Back to square one.
The next six months were a cycle of feeling totally fine until an episode, then waking up with a sense of dread when the next one started, and either deciding to go to the hospital where I would eventually be sent home with a sort of metaphorical shrug of the shoulders or deciding to just stay home and tough it out. By June, I was gathering a medical file of all of my tests, ER visits, and my own data. I was being referred to numerous specialists who would basically say, “Whatever it is, it doesn’t seem like it’s in my field…”
The summer was a lovely break, and I felt good. I completed a summer course, went to Guatemala, took my parents on a road trip, went church camping, and everything was good. I returned to school, sat through teachers meetings, set up my classroom, met parents and students at our open house, and I felt good. Then the morning after the open house, I woke up and symptoms had started again. I woke up actually thinking I had a migraine. I took an Advil and went back to bed, texting my parents that I wouldn’t be coming to see them that day. I woke up an hour later and realized what it really was. My hands were shaky. I felt like I had a pit in my stomach. I couldn’t shake the sense of dread. As the day wore on, I felt extremely wired, like I couldn’t sit still. Eventually, I felt the band of pressure tighten across my chest. It felt like my heart was beating hard, working for every beat. Soon the vomiting started, and it wouldn’t stop. I decided I wasn’t going to the ER – it didn’t feel like the ER did anything for me anyway. It was just hours of torture and waiting and vomiting, and doing it in front of other people instead of in the comfort of my own home where at least I could alternate between couch and bed and bathtub and had Netflix to sort of distract me out of my misery.
But it was bad. It was really bad. It amazes me that this condition can take you from feeling perfectly healthy and good to I might die at any moment in a few hours. So eventually I went to the hospital, taking my folder of medical files along with me. The ER doctor was so kind, and when he started asking questions and I pulled out my files to show him answers, he wasn’t annoyed. He sat on the edge of my bed and paged through my files, occasionally asking questions. I would point him to answers in my file. He said to me, “We need to get someone smarter involved here. Whatever this is, I am out of ideas.”
Enter my new doctor, internal medicine. He came to see me in the early morning hours. He also paged through my files, asked me multiple questions, went and did some thinking and research. He came back again to talk to me around 9 in the morning. He had some ideas he wanted to follow up on, and he told me I could stay for some testing, but with it being Saturday on a holiday weekend, he said I would probably not be able to get the tests done that day. I knew my symptom pattern well and my chest pain was lessening and heart palpitations were decreasing, so I knew I would actually be able to go home and sleep. We agreed that I would come into the hospital for an appointment to see him. But before I left, he gave me a note with the word pheochromocytoma on it.
Let me summarize the next two months: multiple hospital visits. Approximately one a week. Testing, follow up testing, different testing. By the end of September, I had the results back which indicated pheochromocytoma was very likely, also meaning I could take the right medication. By the end of October, I’d had an MRI. By the beginning of November, I had my final follow-up with the internist and was under the care of an endocrinologist, referred to surgery. Now that we knew what to test for, we could run testing while I had symptoms and very easily discover the results – the crazy amount of extra adrenaline coursing through my system. In December, I had a consult with the surgeon. At the end of January, I received a surgery date. Now here we are, 27 days away from surgery.
Pheochromocytomas are extremely hard to diagnose. They often come with high blood pressure, sweating, and headaches, which could be attributed to any number of conditions. Panic attacks are an actual symptom of the condition. This makes me feel approximately 1% more gracious to the nurses and doctor who suggested that I was having a panic attack. But it makes me even more grateful and amazed by the doctor who suggested it to me before I had even left the ER on my last ER visit.
You may be familiar with the saying, “When you hear hoofbeats, think of horses not zebras.” This aphorism was created by Theodore Woodward, a professor at the University of Maryland School of Medicine to remind medical students to choose the common explanation over the exotic one when it comes to diagnosis. In fact, neuroendocrine diseases use a zebra-patterned ribbon to represent this exact idea – that sometimes the explanation of the hoofbeats actually is the zebra.
The incidence rate of pheochromocytomas is somewhere around 2 per 1 million people. However, many researchers think that number may be quite low since many pheochromocytomas aren’t found until autopsy. The average time from onset of symptoms to diagnosis is three years. This all just makes me even more grateful and amazed to have received a diagnosis.
So I’m getting through this awful day by counting my blessings.
I’m so very grateful for the diagnosis that reassures me – no more wondering if I’m going to die.
I’m so very grateful for the medication that diagnosis provides – symptoms are present but manageable, especially compared to previous episodes.
I’m so very grateful for universal health care. I’m not hundreds of thousands of dollars in debt. When I pondered not going to the hospital, it was never because I couldn’t afford it.
I’m so very grateful for a doctor who not only diagnosed me, but provided the most excellent patient care while we searched for a diagnosis.
I’m so very grateful for friends who prayed for me, who took care of me, who texted to see how I was, who gave rides to or from the hospital.
I’m so very grateful to God for being with me through all of this, using it to teach me more about who God is and who I am.
5 thoughts on “Life with Pheochromocytoma”
Just wanted to encourage you, Bethany. Glad you have a diagnosis and that you know what you are dealing with. Such a relief, I’m sure. Thank you for sharing these insights into this 2 in a million disease! (I always thought you were unique!) I too, hope this will be helpful to someone else who is searching for answers to symptoms that people say are “ panic attacks”.
Trusting you to God as you face your surgery with an attitude of hope and promise.
My mother had a tumor on her adrenal gland and had the adrenal gland removed. When I started having high BP I was doing a lot of research and wondered if pheochromocytoma was a possibility. I am 61 and I have ended up in the ER with sudden spikes of high BP, accompanied by symptoms of heart attack.. but that are also symptoms of a panic attack. Chest tightness, shortness of breath, nausea ( this has been fairly constant). I get sudden rushes of heat, have lost weight, but have attributed that to my good eating and exercise habits. I have frequent headaches as well. I have an appointment with my MD coming up.Unfortunately, I will have to pay all the bills, which adds to more stress. Any advice how to move forward?
As you can see from my story, it took a long time for me to get a diagnosis. So even though it’s stressful to think of mounting bills to pay, sometimes you have to keep pushing the doctors, trusting what your body is telling you.
Because pheos can be genetic, with your symptoms, I would say testing for a pheochromocytoma should absolutely be done. You can ask your doctor for a 24 hour urine test of your metanephrines and catecholamines. That is usually a cheaper test. But the gold standard would be getting blood work done to see your plasma metanephrine levels. Your urine levels can fall more quickly after an attack, but your plasma metanephrine levels are a months-long record in your body. All the best!