The Fludrocortisone Experiment

Although I was diagnosed with adrenal insufficiency in 2005, I did not officially start on fludrocortisone until 2008. The following post describes my journey with this very potent little pill.

Endo #1: No Fludrocortisone

My first endo who diagnosed me was satisfied with the answer of adrenal insufficiency, on Cortef for life. He never felt the need to distinguish between primary adrenal insufficiency or secondary adrenal insufficiency. This provided a good starting point, but it left out fludrocortisone from my daily medicine routine.

I survived from 2005 to 2008 in Arizona without fludrocortisone.

I use the term survive instead of thrive. Yes, I was technically more alive than before diagnosis. However, I still struggled daily with debilitating symptoms. I was still regularly blacking out. I remember vividly a hallway in our Arizona house that I would be scared to walk down for fear of collapsing on the cold hard tile floor.

I also had the most painful aching in the back of my left thigh. Aching is too mellow of a word to describe it. At times, I would want to scream out in pain. But that did not help. Nothing would touch it. I remember sitting silently in public places letting tears run down my cheeks thinking, “This is my life. There is nothing I can do except to just get used to the pain.”

Endo #2: Add Fludrocortisone!

A few days after I graduated high school, my family relocated to Washington State. Shortly after moving, we were able to schedule an appointment with an excellent endocrinologist (Endo #2). I saw him multiple times that summer before heading off to college in East Texas.

At our first appointment, I could tell he was frustrated. I internalized it and thought he was frustrated with me. After much reflection and the wisdom that comes from time, I realize he was frustrated with my case. He was never frustrated at me.

Why did Endo #1 consider me a success with just the Cortef? Why did Endo #1 not dig deeper and determine if the disease was caused by dead adrenals (primary) or a dead pituitary (secondary)? There was more to figure out, and Endo #2 viewed Endo #1 as stopping short.

I had a gauntlet of tests run that summer. The two I remember most vividly included an MRI of the pituitary (I did not think I struggled with claustrophobia until they screwed my head down into that scary neck and head brace to the uncomfortable table), and an EEG of the brain (that goop in my long thick hair took several days to get out).

The results came back and Endo #2 confidently declared “primary adrenal insufficiency.” He immediately started me on Fludrocortisone: one tab a day, in the AM. I headed off to Texas for college a few days later.

Endo #3: “I have no idea what I am doing!”

Managing my case remotely became uncomfortable for Endo #2, so in 2010 he kindly encouraged me to find a doctor more local. More local still meant I had to drive over three hours to reach a larger city. I thought I found a reputable endo associated with Baylor Medical. In hindsight, I realize she had no idea how to manage my case.

Texas has much different weather than Seattle. My fludrocortisone of only 0.1 mg a day was inadequate. She decided to just increase my dose. We got up to 0.4 mg a day (FOUR TABS!) to see if it helped. Spoiler alert: It did not. I became swollen, bruised way more easily, gained weight, and still felt awful.

Part of me feeling awful was due to ineffective generic hydrocortisone. But this overdose of fludrocortisone did not help.

Your body will give hints to the dose of medicine that it actually needs. Learn to listen to them. Through ignoring Endo #3, I realized that my body seemed happiest on 0.2 mg of fludrocortisone a day, with one tab in the morning and one tab before bed.

Endo #9: “Did you know you have a resistivity to this medicine?”

In 2016, I relocated to Nevada. There I found Endo #9, a quirky endocrinologist who loved non-textbook cases like mine. He ran multiple tests and added a few more labels to my list of diagnoses including hypoparathyrodism (apparently my parathyroid is dead dead), and volume depletion syndrome (my body has a tendency to dehydrate and dehydrate rapidly).

He also was genuinely surprised at my “high” dose of fludrocortisone (0.2 mg / day).

Another test revealed that I have a slight resistivity to fludrocortisone. I need to take a larger dose than most to keep myself stable.

Endo #11: “Are you up for an experiment?”

Let us jump ahead again to my current endo, Endo #11. At a recent appointment, I complained how I felt like a paradox.

On one hand, I’m thriving! My quality of life seems amazing, I am able to tackle large projects, I have an active social life, and I am proving to the world I am Clearly Alive.

On the other hand, I keep ending up in the ER about once a month. These visits require IV fluids, and my potassium is regularly flagged as out of range low. This is odd for one with Addison’s Disease.

We dialogued and concluded that perhaps my fludrocortisone dose was too large. I hadn’t really touched the dose since 2011. I was willing to experiment to see if I felt more stable on a lower dose. Perhaps this was the missing piece!

I agreed to cut back my dose slightly. I would go from 2 tabs a day (0.2 mg), to just 1.5 tabs a day (0.15 mg).

The Results

I lasted eleven days.

After an ER run at day eleven where my potassium was still flagged as critically low, I called it off. Even if it corrected my electrolyte levels, the reduction of my quality of life was so drastic it was not worth it. We decided a kinder solution was to add in a potassium supplement.

Amber’s Quick Reference to Fludrocortisone Effects

Note: I am not a doctor and this is not medical advice. This is my own observations after being on both too much fludrocortisone and too little fludrocortisone. If you think you have an issue with your dose, please consult with your doctor. And remember, you know your body best.

The lists below are in no particular order.

Too Little Fludrocortisone

1. Muscle Spasms
2. Headaches
3. Dizziness
4. Unstable Blood Pressure
5. Chronically Low Blood Pressure
6. Rapid Heart Rate
7. POTS
8. Chest Pains

Too Much Fludrocortisone

1. High Blood Pressure
2. Weight Gain due to Fluid Retention
3. Swelling of the ankles
4. Easy Bruising
5. Headaches
6. Dizziness

Final Note Regarding Fludrocortisone

Fludrocortisone helps your body retain more sodium. It works best when you add additional sodium to your diet, which is easily done by using salt tabs. My current favorite salt tabs are produced by Salt Sticks. PS – I have a personal discount code specifically for our community! You just have to ask me for it 🙂