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The view from the other side

When I was diagnosed with adrenal insufficiency just over a year ago, our world was turned inside out. Suddenly, we had an answer for why I had been so sick, but a whole slew of questions. What caused it? How would I feel better? WOULD I feel better? Why me?

It seemed like every corner we turned, there was another question. For every answer found, several more questions came. I struggled with oral medications, constantly suffering from low cortisol symptoms I couldn’t control, and increasing doses of steroids just to be able to function.

Eventually, I heard about how several people have begun to use a modified insulin pump as a method to administer solu-cortef. These near constant infusions of steroids allow patients who are otherwise unstable to have greater control over their steroid dosing and symptoms. Many even become able to maintain lower doses of steroids for daily use, which helps to lower the risk of side effects like weight gain and bone loss.

Now, as I’ve spent more than a year learning about this mountain of a rare disease I have to maneuver every day, I’m finding that the world of advocacy is often overwhelming.

With no understanding of why oral medications don’t work for me, I’m resigned to six injections a day of solu-medrol, or methylprednisolone, just to maintain stability. My endocrinologist has no experience using an infusion pump for cortisol, and struggles to get in touch with one who can guide him through the process, from prescription to maintenance.

My ever growing mountain of used insulin needles feels like it will bury me alive, though it’s the only thing that keeps me so…

Now that I have a laundry list of diagnoses, which keeps growing, I’m learning that it isn’t any easier on the other side of diagnosis. Yes, I’m diagnosed, treated, and alive, but it often feels like no matter what I do, it’s always an uphill battle in front of me.

For now, I focus on gathering resources, making contacts with similar experiences, and hoping that I can just continue to put one foot in front of the other, taking one day at a time, until I reach the peak and can just enjoy the view from the other side.

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Moving Mountains

I’ve been thinking a lot lately about mountains.  Where I grew up, and live still, there are mountains all around me.  Some are small, some are large, some are “typical,” and others are world-renowned.  However you look at it, they’re beautiful.

The thing about mountains, though, is that they do not like to move.  They’re pretty stationary, unless there’s a catastrophic event like an earthquake or a volcanic eruption.  Within our lifetimes, we rarely see any changes to a mountain.  We like it that way, though.  They’re predictable in that regard.

While the climb, the hike, the dip in the glacial lake can all be risky, the one thing we can generally count on is that those mountains will go nowhere…

But in the world of chronic illness, our metaphorical mountains can become insurmountable and overwhelming…


daylight forest glossy lake
Photo by eberhard grossgasteiger on Pexels.com

When a person is suddenly struck by a chronic, debilitating, and even life threatening illness, those mountains before us no longer represent a fun challenge.  They, instead, represent an obstacle keeping us from a diagnosis, treatment, and quality of life.

When I was young, I hiked and backpacked for fun.  I spent two weeks on an expedition course with National Outdoor Leadership School (NOLS) with only the things we could carry on our backs, and a one time re-ration stop about halfway through.  We had to read a topographical map, and follow a compass to figure out where we were going.  We had to keep track of landmarks, water sources, open clearings, and more!  I was cool, calm, and confident about my skills, and I stood out as a leader among my group.

I also spent time backpacking and canoeing with my dad.  We explored the Canyonlands of Utah, the Rocky Mountains, spent lazy days floating rivers, and cool nights counting stars.  The mountains around us were inviting and freeing.

The mountains I began to face throughout the next decade, however, became so much more.  They were not beautiful, or enticing.  They were cold, calculating, and tried to kill me.  In fact, if I hadn’t clung to my love of a challenge, they may have killed me.  Doctors didn’t know what was wrong, and even as they started to inch toward a diagnosis, they brushed things off as “too rare” or that I didn’t fit the textbook examples.  There was no way that could be the diagnosis, and the mountains still wouldn’t move.

It wasn’t until I began to educate myself in rare diseases, adrenal insufficiency and Addison’s disease specifically, that I saw those mountains begin to shift.  The more knowledge I gained, the smaller the mountains became.  They grew again as each doctor continued to dismiss my concerns, but as lab tests became irrefutable, those mountains again became moveable.

I have learned over the past several years, though, that new mountains will pop up in front of me, and the best thing I can do is keep climbing.

Some days, getting out of bed is a mountain that needs moved.

Some days, staying awake to get anything done is a mountain that stays solidly planted before me.

Some days, the mountain of laundry is my biggest victory!

Some days, not screaming at the doctors who continue to claim that I can’t possibly have anything else wrong, or that I spend too much time researching my illnesses is a mountain that I barely scrape by.  It’s devastating when the mountain grows before you, in the form of a PhD who has never known true chronic illness in any way other than a textbook patient.  I am in no way a textbook patient.  That’s going to be my permanent mountain, but as I learn more, experiment more, read more, advocate more, I find that this mountain is not immovable either, but will need to be chipped away at slowly with every appointment, every test, every follow up.

But for today, I’ll settle for the mountain of laundry, the victory of having taken my dog to the vet and cleaned the living room.

As for tomorrow?

I’ll move another mountain.

adrenal diseases

Why “Adrenal Fatigue” is Dangerous

Modern society loves a good quick fix to every health dilemma. One of the fastest growing diagnoses is also incredibly dangerous: adrenal fatigue.

This diagnosis often comes from a naturopath, a practitioner of alternative medicine. While these practitioners have validity in some arenas, they are not endocrinologists, and they are not trained in diseases of the endocrine system. Occasionally, a general practitioner will also diagnose adrenal fatigue.

What is this fad diagnosis? It’s based on the belief that the adrenal glands can get tired from over use. Working too hard? Been sick a long time? Troublesome relationship? These things supposedly drain the adrenal glands of their ability to produce enough cortisol, a life sustaining hormone.

The reality is that the adrenal glands are incredibly resilient! There is literally zero scientific evidence to support this fake disease, coined by naturopath James Wilson in 1998.

Even more dangerous than a fake disease is the way the disease is treated. Adrenal cortex supplements are pushed onto patients with suspected AF. I say suspected because there is no way to test for this diagnosis.

Adrenal cortex supplements are often derived from pig or bovine adrenal glands, and are unregulated by the FDA, have no guarantee of how much of the hormones you’re actually consuming, and contain all of the adrenal hormones, including adrenaline which can cause a dangerous imbalance of hormones in the body.

The biggest problem with these supplements is that they disrupt the HPA axis, and prevent the body from producing hormones naturally. (See this post for more information HPA axis). The result of this is that these supplements, aimed to improve the daily life of these patients, actually can cause adrenal insufficiency.

Mayo Clinic, Harvard, and many more well respected endocrine departments have spoken out against adrenal fatigue. It’s a non-diagnosis that causes more harm than good.

One of the other problems with this explanation of adrenal fatigue is that patients could possibly have adrenal insufficiency, but without proper testing, they go undiagnosed for too long. Sometimes the supplements given will sustain their energy levels and body function, but eventually, they will stop working and the patient may experience adrenal crisis, a life threatening event in which organs begin to shut down due to lack of cortisol.

The use of adrenal supplements will delay the diagnosis and treatment of what is actually causing the fatigue and symptoms, so it is incredibly important to get a proper diagnosis, no matter how difficult it may be to find a doctor who is familiar with adrenal insufficiency.

For more information, check out the following websites:

Science Based Medicine

Harvard Health

Hormone Health Network

Mayo Clinic

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When normal doesn’t look the same

tumblr-alone-girl-so-tired-Favim.com-4241648

In high school, I was always just a little more tired than everyone around me.  I wanted to be motivated to do things, but I really felt exhausted and overwhelmed most of the time.  Other girls my age were playing basketball, swimming, running track, creating new student council activities, and raising money for the Spanish class trip to Mexico.

I was hoping there was nothing to do on the weekends, pushing myself to participate in speech and debate, and then sitting to rest between rounds every weekend, wondering why I was so dang tired.

In college, I slept through most of my 8:00 and 9:00 classes.  I failed classes, dropped classes, and scrambled to pick up the slack and pull off some pretty remarkable GPA saves.  It took 11 years of hard work to finish my 4 year degree.

Most people chalked it up to laziness.  My family wasn’t sure I’d ever finish college, and quite honestly, I didn’t care for most of those years.  My motivation came in the form of a pregnancy, and then stillbirth, which made me realize that if I wanted to do right for any future kids, I couldn’t be a shift leader at a fast food restaurant forever.  Don’t get me wrong, some people pull it off marvelously, but I have expensive tastes.  My brothers were also finishing their degrees, one of them a PhD, and I was feeling like I was less-than.

At the time, and for nearly 30 years, I wondered why it was that I seemed to be more tired than everyone around me.  I slept just as much, if not more, than most kids my age.  The only person I’d ever seen sleep later than me was my middle brother, who also happened to go at a million miles a minute the rest of the week.  It made sense that he needed to play catch up on the weekends!

One of the realities I’m still struggling with is that I have delusions of grandeur, and almost no motivation to actually get anything done.

I’m not lazy, though.  Far from it.  I have hopes and dreams, and things I want to accomplish.  I want to start a local support group for chronic illnesses.  I want to reach out to doctors and speak to them about adrenal insufficiency and growth hormone deficiency.  I want to show that depression is sometimes a symptom of a bigger problem, and by finding the root cause, the depression becomes easier to manage – not because it isn’t there, but because we can treat the mental and physical aspects of it.  I want to change the world.

But I also don’t want to get out of bed.

Most people wake up at least semi-refreshed every morning.  By the time they’ve showered and had their morning coffee, they’re ready to get the day started.  They can take on the universe! The kind of tired that they might feel is more related to the fact that they couldn’t put down their book last night, or they just HAD to finish a season of their show on Netflix and didn’t stop until midnight.  Hey, I do that, too!

What I’m struggling to accept is that my normal isn’t your normal.  Or hers.  Or his. Or theirs. Or anyone’s.  You have adrenal insufficiency, too?  Awesome (ok, not awesome, but kindred spirits here…) Your normal isn’t the same as mine.  We spend so much time talking about how the media has skewed our image of beauty, but we don’t talk about how mainstream media affects our beliefs about our own lifestyles and health.

I did not choose this life.  When I was younger, I wanted to be a lot of things – an astronaut, a marine biologist, a teacher, a lawyer, the first woman president.  I still want to do most of those things.  Though now, I think I’d make a really good doctor!  But I do not have the motivation.  It’s an intrinsic flaw in my wiring.  Legitimately.  It’s listed as a symptom of growth hormone deficiency.  I’m pretty sure that replacing the growth hormone over the past year has improved this, but it’s also made worse by the extreme fatigue that haunts me daily.

My normal is more like, lying in bed hollering to the children that they absolutely must get up for school right this second, even though Mommy is still largely immobile.  My normal is hoping that the kids at least moved the laundry so all I have to do is turn the dryer back on for its obnoxious second cycle.  My normal is realizing that I have some energy this afternoon, and rather than overdoing it and sacrificing the weekend, I can sit down and write again.  Today it’s a blog, tomorrow it may be another novel.  Yes, another.

I wrote a book.

You see, normal isn’t the same for anyone.  People without chronic illness experience normal differently than their peers as well.  The most important thing I have to remind myself of is that comparing my day to yours is completely pointless and devaluing.  To both of us.  Your life doesn’t have more or less worth or importance because you can or cannot do something that I also can or cannot do… and if you understand that concept, please come remind me once in a while!

Today’s normal is different than tomorrow’s will be.  It’s a reality I have to accept. I’m trying to take it one day at a time.

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When the pieces don’t fit

There’s a textbook for everything in medical school. Heart, lungs, brain, skin, everything has a specialty. In endocrine textbooks, the adrenal glands tend to have a relatively small chapter. In their defense, there’s a lot of hormones, and most common endocrine disorders are related to thyroid or diabetes. Diabetes is so common in the United States especially, that it is the most prevalent specialty within endocrinology.

Diseases of the hypothalamic-pituitary-adrenal axis are incredibly rare by comparison. Addison’s disease, the autoimmune destruction of the adrenal glands, is quite rare. It’s commonly referred to as primary adrenal insufficiency.

Increasingly common, however, is secondary adrenal insufficiency (SAI). This is a disorder of the adrenal glands caused by a disfunctional pituitary gland.

One reason for the increased prevalence of SAI is the abundance of steroid treatment for other illnesses, from allergies to lupus. Long term use of steroids has a risk of disrupting the HPA axis, and tricking the pituitary gland into believing it doesn’t need to produce adrenocorticotropic hormone (ACTH), the precursor to cortisol.

A result of the pituitary gland believing it’s services are no longer necessary is often that it completely forgets how to work, and as a result, it no longer produces ACTH, which is necessary for cortisol. If the ACTH is missing, the adrenal glands don’t think they need to make cortisol, so they don’t.

When a person stops using corticosteroids for their other illness, sometimes they find that they experience profound fatigue, low blood pressure, low blood glucose, and many other signs and symptoms of adrenal insufficiency.

It’s essential at this point that a person meet with their doctor to investigate potential SAI.

Keep in mind, SAI isn’t only caused by steroid use. It can be due to a pituitary tumor, pituitary damage, or sometimes an unknown cause.

Testing for SAI is tricky, because sometimes the adrenal gland still work, if they’re given the opportunity.

Standard testing, as laid out by Cleveland Clinic, has a pretty clear path to diagnosis. However, SAI isn’t always clear cut.

Sometimes a patient will have a low baseline cortisol, and despite that baseline, when given an extra large dose of synthetic ACTH, or cosyntropin, the adrenal glands respond appropriately.

That could look something like:

Cortisol baseline: 4.5

Cortisol 30 minutes: 18

Cortisol 60 minutes: 23

ACTH baseline: 5

If a patient has that inappropriately low cortisol as well as ACTH, then further pituitary function needs to be assessed.

The reality is, however, that many endocrinologists assume that any reasonable response of the adrenal glands rules out SAI.

For example:

Cortisol baseline: 3.4

Cortisol 30 minutes: 12

Cortisol 60 minutes: 16.8

Many doctors incorrectly assume that because the adrenal response is to more than double (or sometimes greater than 10 more than baseline) the cortisol response is accurate and they refuse to diagnose a patient.

There’s a clear cut set of diagnostic rules, and some old information floating around that leads these doctors to ignore clear diagnostic criteria, leaving many patients at continued risk of adrenal crisis and death.

When a patient finds themselves in a position where it seems like their doctor doesn’t understand, or that the pieces don’t quite add up, it becomes essential that they continue to pursue more testing and an eventual diagnosis. Your life very well could depend on it!