From Cancer to Adrenal Insufficiency a Story of Bravery

Today I am sharing the story of Michelle a friend who struggles like me with Adrenal Insufficiency. Thank you, Michelle, for sharing your story.

From Cancer to Adrenal Insufficiency – A Story of Bravery

I spent the first two decades of my life thinking I was a normal, healthy person. I was invincible of course, so blissfully unaware of the tumours growing and the struggle that awaited me.

I inherited a mutated gene responsible for Multiple Endocrine Neoplasia (type 2a to be specific, or MEN2A for short.)

The condition causes medullary thyroid cancer as well as pheochromocytoma tumours. These are epinephrine and norepinephrine secreting tumours, typically on the adrenal glands. These are called "pheos" for short.

Pheos are dangerous because the hormones they secrete, epinephrine and norepinephrine (what you commonly call adrenaline,) cause massive blood pressure spikes.

This leads to heart attack, stroke, and death. These blood pressure spikes are called “episodes.”

The medullary thyroid cancer likely grew slowly throughout my life, but did not present any symptoms, at least none I recognised. I grew up thinking it was perfectly normal to feel tired and ill spontaneously.

The first severe pheo episode I actually recognised occurred at age 21.

I was at work, talking to my supervisor when something strange happened to me. Suddenly I felt weak, and started shaking, I felt like I was going to faint and held on to a shelf for support.

My heart started pounding, and then came…the headache. They are not adequate words to describe the agonising, unbearable pain in my head. It surpasses migraine intensity, worse than any pain I’ve ever felt.

I take after my mother, the stoic type. I did everything I could to pretend I was fine, but as time went on these episodes kept happening more and more frequently.

I finally told my dad about these crazy headaches, and unfortunately, he knew all too well what I was describing.

They were exactly his symptoms before he was diagnosed with MEN2A. But wait…this couldn’t be happening to me! I don’t want cancer, surgeries, and the misery that comes with it!

I could die, and that is just unacceptable! Nope. It couldn’t be that!

I suffered in silence for more than a year, very much in denial at first. No way was I going to the doctor!

I hate going to the doctor! Even while pregnant with my first child, I didn’t think to mention any of this to my OB.

In fact, the headaches calmed down during pregnancy, so I foolishly thought the problem was going away on its own.

In June 2011 I had my first baby. She was the most beautiful thing I ever laid eyes on, and my life changed forever. In many ways, this was the happiest day of my life, but something was wrong.

I was weak and in so much pain, I could barely feed my baby, but I ignored it and pretended I was fine. Nothing would stop me from taking on my new role as a mom.

The next day, the headaches were back and worse than ever. Literally every time I moved a muscle even the slightest bit…bam! Heart palpitations, nausea, vomiting, stomach pain…and the headaches, they were horrific.

I couldn’t do anything but cry and scream in pain. Day two of my daughter’s life and I was already failing her because I was too weak to breastfeed.

The next month was a blur. The nurses were panicked, I was moved to ICU. Away from my baby. The blood pressure spikes had reduced my heart function, one doctor was talking heart transplant.

My family was terrified. They told the doctors about the family history of MEN2A, but the doctors dismissed it- that’s too rare.

It wasn’t until I caught pneumonia and they x-rayed my lungs, that they saw the tumours on my adrenals. More testing. More misery. More missing my baby.

They tried to delay her release from the hospital so we could all go home together, but that never came to be. My husband had only been a father for a few days and now he would have to bring home a baby by himself and play mom as well. He brought her to my room to say goodbye.

My heart was broken because I was not going with them. After they went home, the hospital became even more lonely and unbearable.

Eventually, the doctors at this hospital realized they did not have the experience to help me, and I was transferred to another hospital by ambulance. At this point, I had been in the hospital for about 3 weeks.

Upon transfer, I was left in a small exam room because there were no empty beds. Just a chair, no bed, no IV, no heart rate or blood pressure monitoring, no call button, no nurses.

Me, alone, in excruciating pain. Closed off in a room, nothing to drink, no clock to tell the time or way to communicate with my family or anyone else. Forgotten.

All I could do was pray. I can honestly say that was the worst experience of my life. Pain, misery, fear, isolation. I know now what hell is like.

I was eventually moved to the labour and delivery recovery room because they had no idea where else to put me. It was a long narrow room full of people, lined with beds on either side, divided by curtains. The room was filled screams of pain, the chattering of nurses, and women crying.

The fluorescent lights stayed on 24 hours a day and it was impossible to sleep. Not an ideal environment when you have constant headaches with sensitivity to light and sound.

I couldn’t survive much more of that hospital, and the emptiness I felt from missing my husband and baby girl was killing me. I tearfully begged the doctor making rounds to let me go home.

I was in no condition to leave, but I faked it, and I pleaded. He reluctantly allowed it.

Flash forward 5 years and 5 surgeries later, I am still fighting medullary thyroid cancer and Pheochromocytomas, and it has come at a heavy cost.

On my 23rd birthday, I had my left adrenal removed, and with it, a softball-sized tumour. My cancer-ridden thyroid was next to go.

Because adrenal glands are essential for life, I tried to save my last adrenal and had the only portion of my right adrenal removed along with another pheo.

Then came the bilateral neck dissection to remove cancer that had spread to my lymph nodes.

The pheo on my right adrenal came back, and in September 2014 I had my final adrenalectomy, forever sentencing me to steroid dependency for cortisol replacement.

Every doctor I spoke to prior to surgery assured me this is no big deal, just another pill to take.

I told them I didn’t think I could manage to be my own adrenal gland, but the truth is I had no choice, the tumours would kill me.

Doctors simply cannot prepare you for the radical life change that is adrenal insufficiency.

They cannot educate you about this condition, because they themselves are inadequately educated about something so uncommon.

They helped me get here, and now I have to figure out the rest on my own. I was taking my meds twice a day exactly as I was told, but I was still sick and miserable.

There were moments I felt alright, and it was definitely better than having a pheo or being dead, but I could barely function. I was having severe mood swings, fatigue, headache, nausea, and dizziness among other symptoms, and thought I was going crazy.

This prompted me to reach out to others with adrenal insufficiency, which was a huge turning point for me.

Finally, people that understood! I learned from their experiences, I researched, experimented, documented. I became (and still am) obsessed with the endocrine system.

Turns out I was experiencing low cortisol symptoms because of inadequate and illogical medication dosing instructions I was given by my doctor. The person I was supposed to trust.

The scary thing is, everyone with adrenal insufficiency is getting erroneous and dangerous information because their doctors just don’t know any better!

The knowledge and treatment of adrenal insufficiency are severely lacking! We are in desperate need of new treatment options! We need universal emergency protocols!

We cannot afford to get shrugged off at the ER because they aren't familiar with the condition! We are human beings, we want to live, and we desperately need understanding!

This all happened to me because of one tiny gene I inherited. Unfortunately, I have passed this gene to my daughter. I am grateful her condition has been caught early with genetic testing.

My greatest wish is that she will be spared some of the sufferings I’ve endured. I like to believe medical technology will advance in the coming years so that her adrenals can be saved.

However, it’s likely she will eventually become steroid dependent as well. That being said, I have to make the most of this adrenal insufficient life. I am the living example of what her future can be.

What message does that send her if I give up? If I mope around feeling sorry for myself all day? I can’t let this condition take my life away from me.

I have to learn, I have to adapt and I have to overcome for her sake and be the best chronically ill mom I can be.

Follow my Journey at https://cortisolmusings.wordpress.com

Learn more about MEN2a, medullary thyroid cancer and pheochromocytoma here:
http://patient.info/doctor/multiple-endocrine-neoplasia-type-2-men2

Michelle x