I, like many pheo patients, searched for answers to my medical issues for years. Many of the symptoms were subtle at first, but in the summer of 2024 I began having extreme blood pressure spikes, anxiety and panic attacks with no clear cause, weight loss, hot flashes and flushing spells, tremors, and many other symptoms. 

I visited the ER more times than I could count, saw specialist after specialist, being dismissed as only anxiety. I knew something was not right, I was barely functioning. I missed tons of work, thinking I was having a mental breakdown. My psychiatrist at the time kept telling me there had to be a cause for a breakdown, but there was none. I had a CT of my abdomen in Oct 2024, ordered by my pcp just to make sure everything “looked ok”. The radiologist reported no findings, unremarkable, but my symptoms continued.

Fast forward to March of 2025. I was finally able to see an amazing endocrinologist in my town. She tested metanephrines, etc. and they came back really elevated. During the testing period, I was also having my cortisol checked, and was told to do the Dex suppression test. The steroid sent me into crisis. I went to the hospital that morning for blood work, feeling totally off. Pain in neck and head, dizziness, hot, my bp was 220/110. I walked myself to the emergency department of the hospital. Told the staff of my high metanephrine test. They did another CT scan and found a 4 cm pheo on my left adrenal gland. 

I remember seeing the report on my chart, from my hospital bed. I panicked thinking “my ct in October was clear, how did this grow so fast?!” The er dr and my endocrinologist who called me, informed me it was in fact there on my scan in October. They were able to access to compare, and indicated the radiologist had missed it. While I was upset and worried, I was relieved to have an answer to my issues. I spent a few nights in the hospital because my troponin and heart enzymes were very elevated. 

I met with my endo as soon as I was released and we set up a plan and referral to an endocrine surgeon in Pittsburgh, PA. The experience was amazing. I got in for a consult super quick, and was scheduled for surgery on April 21. I had my whole left adrenal gland removed, and my initial symptoms improved immediately. It took some time for the pain to subside and some things to regulate but I am so much better now. 

I am so very thankful for the endocrinologist who diagnosed me and to the surgeon who took care of me. I try to inform others of this condition, because I think a lot of times it is missed or dismissed for less serious issues. I have had a few follow up visits and my metanephrines, which were 12 times the upper limit, are normal. I just can’t say how thankful I am to feel good again. My anxiety is better controlled, my blood pressure is perfect, I am able to live again! The nervousness of reoccurrence is still there around follow up visits, but glad to feel good in the moment. 

Thankful to my son, my family and fiance for being there through it all. Always advocate for your health! We know our bodies more than anyone! 🦓