I’m not a doctor; This post is not intended to diagnose.  I recommend seeking a competent health professional to guide you through healing.  

In the beginnings of adrenal fatigue my blood cortisol levels were high.  So high that my PCP sent me straight to an endocrinologist, who put me on a 3 month waiting list.  My PCP wouldn’t have thought to test for cortisol if I hadn’t asked him to.  We had exhausted all other possibilities and I had done some research online that prompted me to ask for the test.  Most doctors roll their eyes when I tell them I’ve been reading things online.  This one listened to me and ordered the test.

I couldn’t wait 3 months to see a specialist.  I wasn’t sure I’d be alive that long.  The fear lead me to search for a Functional MD.  The FMD could see me within a couple of weeks and let me know that a blood test wasn’t the most reliable way to test hormone levels.  She ordered a saliva test.  The kit was mailed to me by the processing company and I mailed it back with the frozen samples. This was fairly unpleasant because I had to fill a test tube with saliva every few hours during the testing day.  I have a thing about spitting….yuck.  The saliva test shows hormone levels as they fluctuate during the day.  Healthy adrenal glands produce the highest levels of cortisone in the morning, then taper off gradually through the day with it’s lowest levels at night for healthy sleeping.  Saliva tests can be eye-opening but it is just a snapshot of what’s going on that day.  Cortisol levels vary from day to day depending on stress and other factors.  Because I’ve done a few tests I’ve learned to estimate what’s going on with my cortisol levels by how I’m feeling.

My saliva test showed that the pattern of production (high morning, low evening) had become normal (this was after several weeks of an elimination diet and high doses of phosphatidylserine before bed) but my hormonal levels were too low across the board–cortisol, thyroid, sex hormones.  For me, too low feels much worse than too high.

When cortisol levels are off it affects other body systems like the thyroid gland, blood pressure and cardiovascular systems, immune system, digestive system and sex hormone levels.  That’s why there are so many symptoms associated with Adrenal Fatigue Syndrome and why some of them can be polar opposites–depending on which stage the illness is in.

I asked my FMD about following up with an endocrinologist and she said they are trained to treat Addison’s disease (loss of cortisol production), but would send me home without treatment at my current levels until I developed that disease.  I would develop Addison’s, she assured me, if left untreated.  Addison’s is treated with hormone replacement therapy for the rest of the patient’s life. Without hormone replacement Addison’s Disease is FATAL.  She also said, If I took action now  to reduce stress, change my diet, and nourish my body, I could prevent Addison’s and go on to live a vibrant life free from permanent hormone replacement therapy.

Some days I feel better than others.  Even though I don’t always look sick, I’m at risk of developing a fatal disease.   I know what to do, but it isn’t a quick fix.  I try not to mention it online (especially on Facebook) because I have 100 friends who sell the latest get healthy powder that is sure to fix me all up.  It’s exhausting explaining over and over again why I prefer to stick with what I know is already working at a fraction of their price. (Besides which of the friends should I support?) The healing can’t be rushed, because there are variables that I can’t control like someone dying, unexpected financial loss, or a wild bat flying into the house and giving me a fright.   Someone cutting me off in traffic and scaring me or navigating a new situation (like taking the kids to Sky Zone for the first time) all drain my cortisol levels.  Any emotional or physical stress (like going out in the extreme heat or the cold, getting too hungry, or conducting a choir performance) sets back my healing temporarily.

I could go on partial hormone replacement now, but if I do, my body will slowly begin to make less and less of it’s own hormones.  That will push me closer to Addison’s disease, the thing I’m desperately trying to avoid.  I’ve had well-meaning friends badger me over the phone to take hormone replacement so I could just be normal again.  It’s hard for me to explain why I’m hoping for a better way.  It’s extremely personal and most of the time I prefer not to talk about it, especially when I feel criticized for decisions I poured all of my research and tears into.

At church people who love me and have been praying for me ask if “I’m all better.”  I smile and tell them, “Today is a good day.” I know they are looking for a word of hope after the investment of their prayers. I feel a TON of hope, but I probably won’t be all better for years.  There are some mornings that just getting to church with my children all dressed and fed has me ashen and trembling.  I’ve had to give up worrying about being late, trying to be at early morning choir rehearsals, or coming to the extra services they have Sunday and Wednesday evenings.   Considering there were months that I couldn’t get out of bed without help or raise my own arms because they were too heavy.  I am a LOT better now.

Because I have an invisible disease, people misunderstand my absence from extra church services for a lack of faith and my absence from volunteering in positions of leadership as a lack of desire for service.  I want them to understand that I am fighting something real and   that I have to reserve my limited energy for being a mom and wife.  That’s my true calling from God.  I don’t love Jesus any less than I did when I was there every time the doors were open. Church is extremely important to me, but we won’t build His kingdom by sitting in a pew.

Ok, Symptoms.  Here’s the list in no particular order of wacky things that are part of my adrenal fatigue.  Some of them are related to each other, for example dehydration and low electrolyte levels cause dizziness, fatigue, and low blood pressure.

Low body temperature (as I start to crash the first sign is becoming extremely cold, shivering etc.)

Exhaustion

Sudden development of new allergies (cherries, sweat, and dust mites are my new ones)

Dehydration (both low water and low electrolytes)

Dizziness

Black outs/fainting spells

Low blood pressure: (related to dehydration and a greater need for sodium)

False Low blood Sugar: My body freaks out when my blood sugar gets to 80 and gives me reactions that a diabetic would get at 60

Low Libido

Skin rashes: especially by the nose/cheeks and backs of elbows (related to allergies, thyroid, and low cortisol)

Dry skin and hair

Headaches, muscle pain, general inflammation

Brain Fog: (sometimes so bad that I can’t remember my children’s names or how to read music–I’m a music teacher)

Vision problems: Problems focusing or perceiving what I see (related to dehydration and brain fog)

Sensitive to noise, light, touch, crowds, scents etc.  I’m also very sensitive to people in emotional or physical pain.  I have to be careful what movies I watch and stay away from most news outlets.

Hair falling out, breaking off (related to thyroid)

Brittle nails

Indigestion: (sometimes swinging constipation and diarrhea or gas and bloating.) Interesting that my elimination diet showed no particular food sensitivities.  It is unpredictable what might cause a problem.

Startle easily: Sometimes I wake up suddenly gasping in fright (not from a bad dream–more worried that I overslept)

Poor circulation: cold hands and feet (related to low blood pressure)

Restless sleep: Tons of sleep movement and very short deep sleep sessions

Heavy Arms sometimes: My arms feel so heavy that it’s hard to lift them.  (Related to low blood pressure and low electrolytes)

Compromised Immune System: I get sick very easily.  It’s a big deal if I just sit beside someone who’s getting over a cold. I’ve learned the right blend of essential oils and supplements to stay healthy.  Any illness sets my healing back quite a bit.

Heat and Cold Intolerance

Weight Gain: Because of my vanity, this has been the hardest symptom to deal with emotionally.  I’ve always been careful with my food and exercise.  Since my illness became severe I gained 30 pounds without changing my eating habits.  At times I was gaining several pounds a week, which I’m sure was related to extended bed rest on top of low metabolism hormone production.  It could have easily been more weight gain if I had given up completely and just ate whatever I felt like eating.

How about you?  Have you or anyone you know suffered from Adrenal Fatigue?  What did you find to be helpful?

This is the 4th post in my series of adrenal fatigue.  You can find the others here.