April is Adrenal Disease Awareness Month.
As told to Nicole Audrey Spector
In high school I didn’t feel like myself, just a lot less energetic than usual. It seemed completely normal to think it was stress-related. As college got closer, school got more intense, and then there was the normal teenage stuff of dating and maintaining friendships.
In college, I began experiencing additional symptoms such as anxiety, nausea, lightheadedness, loss of appetite, and trouble regulating my body temperature. In the middle of the freezing winter, I sat in the car with the windows rolled down. Even stranger, my skin had a slightly tanned, yellowish hue, especially around my joints.
I wondered if my fast-paced life was getting to me, if I was just stressed out.
I went to a family doctor who examined me and did blood tests. My lab values all looked fine. And even though I lost some weight, I also looked good – or at least that’s what everyone told me. The slightly darker, slightly yellow tone of my skin actually earned me compliments. “You look so tan,” people would say.
By the time I reached the end of my degree and was preparing to pursue graduate school out of state, my symptoms had become almost unbearable. I was so exhausted that getting dressed in the morning felt like climbing a mountain. I couldn’t stand up without feeling dizzy. I started having fainting spells out of the blue. I would walk around the room with no problem and then collapse.
A family doctor examined me and suspected that my problem was psychological. He sent me to a psychologist who tried to hypnotize me. I went there maybe twice at most, with no diagnosis, no guidance, and completely convinced that my physical symptoms were all in my head.
I made many visits to the emergency room checking for incessant vomiting, lightheadedness, and abdominal pain. They said I was severely dehydrated and gave me IV fluids. The liquid made me feel better and better – but not for long.
I was hoping a cardiologist would provide answers after putting me through various tests. He didn’t. A doctor prescribed me medication for low blood pressure, which helped a little with the dizzy spells, but my other symptoms continued relentlessly.
I began to believe I was a lost cause.
Eventually I became so ill that I had to take a semester off school and move home. I was practically bedridden and too weak to do much for myself.
In a way, my father was the one who saved my life. He heard a commercial on the radio in which an endocrinologist was talking about rare autoimmune diseases. It was as if a small bell was ringing in our universe. Ring, ring, ring! Could that be it?
My parents took me to an endocrinologist. Tests revealed that I actually had an autoimmune disease: Addison’s disease. The severe symptoms I had been suffering from for years were Addisonian crises, which occur when your adrenal glands don’t produce enough of the stress hormone cortisol, which we all need to survive.
The endocrinologist told me I was lucky to be alive. A major Addison crisis can kill you.
Addison’s disease is rare and can be difficult to diagnose because routine tests often come back “normal.” Additionally, symptoms may be similar to those caused by other medical conditions. You can also look perfectly healthy while your body completely shuts down.
Many people with Addison’s disease do not initially receive the correct diagnosis. Like me, they may suffer for years, thinking they have some mysterious illness for which there is no treatment.
When I finally received the diagnosis, I was incredibly relieved. I had been through so much. Not just in terms of symptoms, but also in terms of testing. I had CT scans and even a lumbar puncture. I really started to believe I wasn’t physically sick, but mentally unwell. I finally had a great doctor who truly understood what was happening to me and could help.
There is no cure for Addison’s disease, but it can be treated with corticosteroid medications. It’s a matter of achieving the right levels in your body and you need to take medication for life. You also need to have your cortisol levels tested regularly to ensure the correct dosage.
It was a bit difficult for me to find the right dosage of medication. At first I felt a little uncomfortable. But once the dosage issue was sorted out, I felt like myself again. I was overjoyed, as were my family and friends. I got my life back. My prayers were answered and I felt so incredibly blessed.
Today I take a corticosteroid medication three times a day and a blood pressure medication in the morning. Stress and illness hit people with Addison’s disease very hard because we cannot produce enough cortisol to cope. Sometimes I still go to the emergency room with a stress-related Addisonian crisis (a high-dose cortisol injection gets me back on my feet). But most days I’m stable.
Addison’s disease may be rare, but keep in mind that “rare” in this case still means that tens of thousands of people around the world live with it. And while it can affect anyone, most of those diagnosed are women.
I hope that awareness of Addison’s disease will increase and that awareness will lead to increased funding for more research and training for medical experts. Had I known about autoimmune diseases, including Addison’s disease, at the time I experienced symptoms, I likely would have been diagnosed immediately and spared years of debilitating symptoms and self-doubt.
But I focus less on the fact that it took me years to get the diagnosis and more on the fact that I was lucky enough to finally get it. I am grateful to my healthcare providers and my faith for getting me to this point where I can be with my family and friends to make every moment count.
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Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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