Addison's Disease and Adrenal Fatigue Syndrome... Why Life in My Shoes is a Bit Harder than it Appears

So let's go back to my senior year of college.  I had 18 credits, two or three jobs, I was engaged, and was attempting to manage the every growing stress of getting into law school and understanding what to do with "my future".  And I often ignored the warning signs that I was not "just tired" or "needed a break", I was actually quite ill.

After 8+ hours of studying physics (just in case I still decided to go to medical school) and this would be after work, note the coffee in hand.

And so it hit me all at once.  It was 3am.  I was in an ice cold bath in my apartment in Tampa.  The bathtub filled with some Aveno Oatmeal bath stuff - specifically for people with skin conditions.  I had never really thought anything about how itchy I was all the time.  It was a weird itching sensation.  I would shower and my legs would itch as though something were attacking me from the inside. Scratching did nothing. Lotion did nothing. I'd have to rub ice down my legs and throw on sweatpants with lotion to mildly calm my leg itching down.  I used special body wash, special lotion, had emergency lotions in my purses and all over the house, just in case I got itchy.  Yet, for some reason, I didn't think that there may be a bigger issue.  That 3am bath was a wake up call.  I had started itching around 10 and NOTHING was helping.  I had taken several benedryl and claritons. I had used everything I owned to attempt to combat the intolerable and insatiable itch. And so I finally called my PCP (primary care physician) aka my dad.

Valid, a 3am phone call is not something you want to hear from your daughter, but worse is when you answer and she's crying.  I basically spewed out all my itchy symptoms.  He calmly listened and then started asking me strange series of questions. Had my asthma been bad this year?  How were my allergies this past season? Had I been having a number of sinus infections lately? Did I have difficulty waking up in the morning? Had my PMS been worse in recent years? And the list went on.  Unfortunately, I was answering yes to every single question.  Then he asked me how I had been feeling.  I mentioned how bad my entire body ached.  All the time.  And I mentioned that I was concerned I had fibromyalgia. And that's when daddio dropped a bombshell. "Sarah, your adrenal glands are shutting down."

Come again? I knew vaguely about these glands as in I knew they existed.  I didn't understand the vital role these babies played in my life.  Or how my life was about to drastically change. I had adrenal supplements in my house.  I was supposed to be taking a routine set of vitamins daily.  My mom spent a lot of time, effort, and money to supply me with vitamins.  But I was careless with my health. I rarely took vitamins at all.  And suddenly I was to take 6 of these vitamins on the hour, every hour, until I stopped itching. And so the picture below is the supplement that basically held me together for the last 4 years.

But the thing I remember most  is what my dad said after "your adrenal glands are shutting down", he said, "Sarah, if you can't control this in the next 12 hours, you have to go to the hospital because you have the beginning of Addison's." I was 20.  I had a lot going on.  My first thought was how I didn't have time to be diseased. It's surprising how arrogant we are even when met with the sheer fragility of our own physical beings.  I laid in that tub for a couple of hours. Around 7am, I called Matt to come over and told him everything my dad said.  And so his first reaction "where are these pills?? Take a bagzillion of them!!"

What is Addison's? According to the Mayo Clinic it's a potentially life threatening disease.  I had to do my research.  I actually wasn't even sure what exactly was about to happen to me. See the thing is that the adrenal glands produce a major component of what we need to live. Adrenal glands produce hormones such as estrogen, progesterone, steroids, cortisol, and cortisone, and chemicals such as adrenalin (epinephrine), norepinephrine, and dopamine. When the glands produce more or less hormones than required by the body, disease conditions may occur. See what had happened to me is my extremely low cortisol levels meant that not enough cortisol was being sent to stimulate the Mast Cells, which produce histamine. Thus, my body had none. And my body was itching for months on end before this melt down as a way of yelling out "HEY SARAH SOMETHING IS NOT OK IN HERE" and I just ignored the signs. All of the signs. Including the major signs which had become a family joke: feed Sarah and she will pass out asleep in a few minutes.  My dad told me I was hypoglycemic sometime in high school.  I was to monitor my eating habits and make sure I ate something nutritious every few hours. I did eat every few hours, but primarily because I was a teenager with a crazy metabolism and was constantly hungry. Even though we knew I had a "problem", I was so active and functional, that none of us really pursued it further.

To-go container in my lap. I could pass out asleep anywhere.

The first major sign I can now recall was in 2007.  I was working at a Starbucks inside a Target and while speaking to another employee just slowly fell to the ground. I was so dizzy I couldn't even stand up.  Somebody took me home or I drove in that condition (yikes) and came home and crashed. My dad came home from work and check on me and it happened to be that I had a horrific sinus infection that had turned into an atrocious inner and middle ear infection.

Me directly after the dizzy episode at work. I'm pretty sure I stayed on that couch for about a day or two. 

And for the next few years I would take my vitamins religiously, then forget about them, then feel weak, exhausted, and itchy, then become vigiliant again. It was a vicious cycle.  And somewhere in that process, my mother sent me the book that would change my life: Adrenal Fatigue: The 21st Century Stress Syndrome. I read page after page defining my symptoms. Showing me things that made everything worse. Things that I had been doing for years! The large amounts of coffee I was drinking was killing my adrenals.  My beloved grapefruit diets were destroying my adrenals.  All my complaints and issues were at some point and time traceable back to my stinkin adrenal glands. The next few "charts" or "graphs" will essentially elaborate my point:

I think you get the point.  I had all the major players present and I was killing my own body with diet and stress.  I was a pretty healthy eater - always had been. But my caffeine intake was out of control and I was consistently giving in to my foods that harmed my body. 

Well, you may be wondering, "why haven't I really heard about this stuff?" Well here's a big shocker (only to those of you who think that the MDs and FDA and CDC have your back) most doctors, including endocrinologists, are NOT, again I repeat, NOT taught about adrenal fatigue, more commonly called hypoadrenia, in any of their schooling.  They are not prepared to deal with a patient who presents these symptoms and therefore they give altogether wrong diagnoses - as in fibromyalgia (which we shall save for another post). To quote the wise Dr. Wilson "Despite the fact that subclinical hypoadrenia was recognized as a distinct syndrome in earlier 20th century, there is little acknowledgement of it today.  With only a few rare exceptions, the only form of hypoadrenia recognized by medicine is Addison's disease. . . but adrenal fatigue, a condition that affects many more people than Addison's and Cushing's (a disease of extremely high levels of cortisol caused mostly by steroid drugs) combined, is rarely, if ever, mentioned." 

Here's the really bad thing: lab tests that would actually show what TYPE of adrenal issues you have are not covered by most, I dare say all, insurance plans. It should be no surprise then that doctors are not taught to utilize their observation and deduction skills to think, hey, this could be an adrenal issue.  Lyrica, the most common drug prescribed for fibromyalgia runs about $96.00 per Rx without insurance. It's a big money maker to "reduce pain" without solving issues.  Furthermore, because medical doctors are only taught about Addison's, the only tests they would assume to run would be for Addison's.  But there are many types of adrenal fatigue.  It's not a "one size fits all" sickness.

So here's my suggestion: if you're reading this and you think,"hey I have a lot of these problems", I would say to stop what you're doing, get on Amazon, and buy the book.  It will change your life.  Second, I would find a DC or ND or DO who understands the variations of adrenal fatigue and have such a health care provider help steer you into a new world of health and wellness.  Third, drastically change your diet. I now only drink maybe 8oz to 16oz of coffee a day.  There are weeks when I will go without caffeine for 3-4 days altogether.  My adrenals thank me for it. Fourth, supplements will radically change your life.  I'm not talking about the stuff you get at CVS. I'm talking about legit supplements. No fillers or frills.  The adrenal supplements I take actually have dried bits of adrenal glands from pigs. They are disgusting to take. I take 4 a day. Every day.  I also have a husband who is awesome and now crafts my daily vitamin routine to make sure that my body is running at the top of its game.

Why I wrote this - because the struggle is real.  I will never be "well".  I just had oral surgery and haven't taken my vitamins and 5 days and boom - here's my chronic sinus infection hitting me.  I haven had sinus infection issues since 2007.  I get sick easily.  I stay sick longer than most.  I can't pull all-nighters and be ok. Law school stress nearly killed my body, on more than one occasion. It is more difficult for me to do "normal" things.  My adrenal glands run my life.  I am still a work on progress, but I am striving to daily choose to make them well and to attempt to be healthy.  So before you think that "Sarah, you're like always sick" realize that my body is not ok.  It struggles to function most days. Personally, I think I deserve a medal for making it this far into life and only having a few people who know about what is actually wrong with me.

But mainly, I want there to be an awareness that Adrenal Fatigue Syndrome could be knocking at your door... Make sure you know the warning signs.