Another Adrenal Crisis
Hey peeps, thought I’d check in and let you know how I’m doing. Things were in a weird place for some months. I was getting treatment for the MCAS, some amazing meds that I absolutely noticed were working. And there came a point where I felt it — the MCAS switched off. It wasn’t in the background running 24-7. It was under control, quiet. And I was thinking fine, okay, it’s a forever illness, it’s going to flare off and on and that will suck, but everything else should be fine, right? But it wasn’t. I was just so damn tired all the time. The chronic fatigue had gotten worse without the constant battle happening in my body from the mast cells. It didn’t make sense.
So I asked for a higher dose of the ADHD meds, hoping that the stim would deal with the chronic fatigue. And it did, for the most part, except for the hours each day the chronic fatigue would win, sometimes entire days gone to being exhausted. My working memory was failing again, and I was thinking of putting up another executive functioning board because thinking and staying focused were getting so difficult again. Got my thyroid checked — my numbers had slipped and I was hypothyroid again, so we upped my thyroid dose. Again, expecting energy, return of that working memory, but no. Tried progesterone — my hormones were all low. Maybe it was something in there. Progesterone made me want to sleep all the damn time, even as it was clearly helping other things, like my mood.
Nothing was making sense, and I was between doctor appointments, just trying to figure out why I was getting tireder and tireder. Everything I was doing was supposed to help with energy. I was getting plenty of sleep, taking the right supplements and meds, my labs were where they’re supposed to be, so why was I still dragging? Was this just what happens after being sick 11 years and now “healthy” in an older body? I’m not that old, but supposedly hypermobility can lead to chronic fatigue just naturally, no known treatment of the moment. But I had been so much better just half a year ago…
Then I had a day that sparked a memory and set me on the right path.
Friday, after a good 9 hours of sleep, I got up and went into my little studio/office to work on the computer. The day before, I had spent the day standing at the desk, but Friday I needed to sit. I was exhausted. Everything was demanding I go back to bed, but I refused to lose an entire day, so I pushed on. And at some point, while staring at the computer, wondering why everything I was doing was so damn slow, I noticed that my eyesight was dim, and darkness was crowding the edges of my vision, as if I were moments from fainting. Checked my blood pressure — I was creeping into pre-hypertension instead of my usual normal to low, and my pulse was flying. Weird, but that could all be from the ADHD meds. Checked my blood glucose: even 80. Perfectly fine, except for a complete absence of hunger that felt odd. No MCAS symptoms, no allergies, no reason for the response. I was taking all my meds as I should, including my life saving cortisol.
Hours after that, making myself stand because it seemed to help clear the darkness from my vision a bit, I found myself moments from bursting into tears, bizarrely emotional, completely broken down and I couldn’t figure out why. My brain kept telling me that this couldn’t be normal. It didn’t matter that I was on all the right meds, that I was 11 years older, etc: something was wrong and it wasn’t aging or “chronic fatigue”. Something was seriously wrong.
Eventually, cuz my brain was wrecked by this point, I remembered the last time my vision got like that beyond random dizzy spells when standing. It was when my adrenals failed the first time, a few years into the illness, during treatment for Lyme disease. It hadn’t been a secondary, pituitary knocking out only the cortisol problem that first time. It had been a full blown failure of my adrenals, and with the loss of cortisol production, I had also lost aldosterone production. Something that wasn’t noticed until the day after I was prescribed hydrocortisone, leaving me rushing at a crawl, hugging a wall to stay on my feet, my vision dark and tunneling, to get to the pharmacy before they closed because I was losing all the liquid in my body faster than I could put it in.
It had been terrifying that first time, something in my system very much aware that I was going to die — quickly— without intervention. And that never happened again. Any other time I’ve found myself in an adrenal crisis, it was only ever low cortisol.
Aldosterone keeps the electrolytes balanced in the body, specifically sodium and potassium. Lately I’ve been craving salt, unsure why my intake was changing since I wasn’t active, wasn’t going out in the heat, etc. But after years of this yo-yo-ing, being fine than feeling near death, I wasn’t paying attention. Partially because my brain had been feeling like a sieve, unable to hold thoughts again. I couldn’t write again, my mood kept fluctuating, and I was so damn tired. Everything felt hopeless as I hit this wall that didn’t belong there. A part of me very well knew that there was a level of health I could clearly remember that I was reaching toward. It was absolutely in my grasp — I should be functioning, everything was addressed! — yet something else was wrong.
So after realizing that this was very much adrenal, even if I was getting enough cortisol, I made myself eat some potassium full fruit and doused all my water with salt, including pouring salt into my hand and eating it raw. Hunger returned enough to eat properly soon after, and I ate some wonderfully preservative-laced foods that increased my sodium swiftly. The next day, certain that I had found the problem (but also the weekend and unwilling to go to the ER if avoidable), I asked my partner to take me to get some licorice candy — the real stuff — while I wait for my online order of licorice root powder to get to me.
I got better. Felt sick first — still feel kinda sick, the next day after adding the licorice — as everything started shifting, changing. All these basic functions turned back on, my body suddenly producing saliva again, sounds and scents roaring back into the world at full blast, able to feel my skin, how dry it is, the temperature in the air, my fingers and toes. The constant lower back pain disappeared, even as I was jumping at noises, my startle reflex returned after too many months to count. That reflex felt like something knocking on my nervous system, an internal jolt of energy that demanded everything wake up, start working!
Last summer, my endo said that I had hit the one year mark of treatment, and would only need to be seen once a year for upkeep. She warned me my adrenals might fail, even though I only had secondary adrenal insufficiency, but it had seemed so unlikely. Apparently not so much.
So yeah, I’m back in the recovery stage of things as my body remembers how to do basic things all over again (again), but I suspect things should go faster this time around with everything else basically treated. *knock on wood* I should get some electrolyte drinks… There’s a proper med they might try to put me on (Fludrocortisone), but I remember the half life being too short, with long gaps of fluctuating aldosterone levels, and preferring licorice root over it in the long run. There’s also adrenal cortef, that I’m going to be considering again to supply the other hormones my body is underproducing… I was on all this stuff back when this illness was new to me. At some point the poverty and the years of screaming face pain and unchecked MCAS and untreated adrenal insufficiency just broke me and I forgot so much.
I had thought it had been a poor prescription of licorice root the first time my adrenals failed. Adrenal failure is so rare, but if you have too much licorice, you can literally knock your adrenals out, the same way if you have too much prednisone or hydrocortisone. The body becomes dependent and, once removed, it fails. It’s because licorice contains glycyrrhiza, and although how it exactly works is still in question, it seems to supplement aldosterone and cortisol in those who are either still producing or supplementing cortisol. This is why most licorice candy is flavored with anise oil: over eat it and it’s deadly. I had been prescribed licorice root back then because it was clear something was wrong with my adrenals, but because of the poor communication with my doctor at the time (who ended up out of the practice shortly after), I stopped taking it because I couldn’t afford all the supplements they were prescribing. Stopping led to an adrenal crisis… but the problem was, I hadn’t been taking enough licorice to cause it, and poor communication from a slew of temp doctors after (and a dangerously useless PCP) led to me to assume for years that I was dealing with the mythological adrenal fatigue instead of being one of the rare people who has adrenal insufficiency.
And that’s still hard to get my head around as I get older and learn all the “rare” things I have that are my normal. I went through life assuming my every talent and limit are comparable to everyone else, and then, when learning of my disability, assumed, okay, my limits are worse. They’re why I’m struggling so much and shit just seems so easy for everybody else. But even when struggling, I can do things with ease others would take years to learn, and I keep collecting all these rare illnesses, so I guess rare is a spectrum in multiple directions with this body of mine.
I’m hoping my talents can win for a bit going forward. The last 4 years have felt all about the limits, to be real. I don’t know how many times I’m supposed to get wiped out by something and still expect to get back up and walk it off. This has been a damn long journey, and I still feel like I’m waiting to be allowed to start living my life instead of dealing with all this health bullshit. I don’t even want to claim that this is the last thing and I’m going to be fine, because seriously, I have been wrong so many times now. Why would something like the adrenals and thyroid, two supposedly perfectly treated now, both divebomb the last few months? I don’t even know if having expectations and hope aren’t just a form of trauma and self ableism at this point because it all gets crushed so quickly by reality being completely unreasonable. But that could just be the low adrenals talking atm, and tomorrow — next week/a month/how ever long it takes — will be me back to my cheerful, healthy self. Guess it’s another a wait and see thing.
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