I didn’t want to post about this until something was working; it was too hard to wait, while doctors talked to each other and labs came in and the pharmacy waited to get a medication in stock. My labs show some evidence of over-active thyroid, but the endocrinologist I saw surprised me by looking for, and finding, low baseline cortisol levels. Our first appointment was long, because she asked for my life story behind the bare medical facts. It’s long, especially when my dad’s mental health comes up. I had never seen an endocrinologist before, so I just went with it. I wasn’t surprised when she sent more for more labs and told me to come back after she had the results.
I was surprised when my next visit revealed her suspicion that my diagnosis would actually be low cortisol. She gave me a three-page handout on low-dose cortisone treatment for this, but told me she would wait to call in the prescription until after I had done one more cortisol test. This is a blood draw that has to be done before 9:00 am, while fasting (just putting off breakfast and no late-night snacks). I cracked a joke about torturing me with all these early tests.
“I am not a morning person,” I said.
“That’s because you have low cortisol,” she replied, and left the room.
This shook me up. I have not been able to get myself on a regular sleep schedule, well… ever. The anxiety meds were supposed to help with that. The SLEEP AID was supposed to help with that. Nothing has worked. Not even having a baby who became a toddler who is potty training on the Down to Five and who does not sleep past 7:00, and 7:00 is a sleeping-in day. Her theory is a good one, because cortisol is supposed to peak at 7:00 am. It’s part of what helps us wake up!
I had no idea about the healthy reasons we produce cortisol–I knew it only as “the stress hormone,” a trigger for adrenaline. I thought of it as bad, because a spike in cortisol means panic. Anxiety attack. I knew that very high levels could harm a developing fetus, because this was one reason I decided to remain on my anti-anxiety medication during pregnancy. If anything, I would have guessed that my cortisol baseline would be very high, all the time. But then, I remembered seeing a post on Facebook, a link to a TED talk about childhood trauma and health, later in life. I googled and found it. This is a transcript of Dr. Nadine Burke Harris’s talk and this is a link to an ad-free video of her speaking about “How childhood trauma affects health across a lifetime” – I’ve embedded the YouTube version, here, for our convenience.
Here’s what knocked the wind of out me:
In the mid-’90s, the CDC and Kaiser Permanente discovered an exposure that dramatically increased the risk for seven out of 10 of the leading causes of death in the United States. In high doses, it affects brain development, the immune system, hormonal systems, and even the way our DNA is read and transcribed. … What kind of trauma am I talking about here? I’m not talking about failing a test or losing a basketball game. I am talking about threats that are so severe or pervasive that they literally get under our skin and change our physiology: things like abuse or neglect, or growing up with a parent who struggles with mental illness or substance dependence. [emphasis mine]
Here I was, seeing my psychiatrist, midwife, general practitioner, and an endocrinologist, because my life around my monthly cycles had become hellish. And here was this video, suggesting that it could all go back to life with my dad, particularly those last four years, when I lived alone with him, as his paranoia deepened into psychosis. “Lock the doors and the windows. Your mother is going to try to kidnap you.” And I did.
The day I heard the low-cortisol theory, I went to therapy (thank goodness for therapy) and threw a tantrum. WHY did everything go back to my father? Did this mean that he was still an abuser, still in control, after I hadn’t even spoken to him in almost two years? I actually wished that a hormonal shift had been caused by having a child, because that had nothing to do with my dad. He’s never met my child. I was angry.
And then, I watched this speech, and I was relieved. It wasn’t that my dad was winning. It wasn’t my fault. I hadn’t given in to him. It just happened. My father’s mental illness began before I was born, and it got worse as I grew up. My brain and body responded just as Dr. Burke Harris describes:
Well, imagine you’re walking in the forest and you see a bear. Immediately, your hypothalamus sends a signal to your pituitary, which sends a signal to your adrenal gland that says, “Release stress hormones! Adrenaline! Cortisol!” And so your heart starts to pound, Your pupils dilate, your airways open up, and you are ready to either fight that bear or run from the bear. And that is wonderful if you’re in a forest and there’s a bear. … But the problem is what happens when the bear comes home every night, and this system is activated over and over and over again, and it goes from being adaptive, or life-saving, to maladaptive, or health-damaging. Children are especially sensitive to this repeated stress activation,because their brains and bodies are just developing.
A little more research into cortisol, specifically, revealed that while a child going through that trauma usually has a high baseline level, the adult who is no longer in that situation will often have a low baseline level of cortisol, but the minute we encounter a stressor, cortisol skyrockets. We still react to stressors as though we are seeing a bear in the woods, even if all we face is the prospect of going to the grocery store.
My third and fourth cortisol tests came back low–not “subclinical,” which would indicate a disease like Addison’s disease, but near the bottom end of the “normal” range. This range is skewed, because we do not test the cortisol levels of people who feel good. The same problem exists for thyroid testing. Many patients are told to go home, that there is nothing wrong with them, because testing does not show dangerously high levels. We may not be suffering from a dramatic, textbook illness, but our suffering, fatigue, headaches, insomnia, muscle aches, whatever it is that brought us to that specialist in the first place, well, that suffering is real. It deserves attention. My psychiatrist sent me to this specific specialist because she wants to know why a patient suffers, regardless of what the lab numbers say.
My specialist’s theory, about me having low cortisol “because of the trauma” (her words), is cutting edge. I’ve had time to ask a lot of people with a lot of childhood trauma in their backgrounds, and no one has heard of this. But here’s the thing: it’s working.
I started taking the first of the low doses of hydrocortisone last week. I cut a pill into four pieces and took 1/4th each day for three days. Then, I doubled it. Then, I took half a pill after breakfast and a quarter after lunch. But here’s what happened: the second day I started this treatment, I began to need sleep at night. The next morning, I woke up on time, by myself. That hasn’t happened every day, but I’ve been carefully listening to my body. On six of the past seven days, I have felt tired between 8:00 and 10:00 in the evening, and I have woken up, on my own, without even my child’s voice (or feet in my face) to help me up. I have had energy during the day. The fatigue that once kicked in a few times a day, leaving me feeling like I couldn’t move a muscle, is gone. It’s just gone. I can take a nap at noon, and wake up at 1:00pm, replacing my old habit of getting up at noon and napping from 3:00pm until 6:00pm. I don’t even know what to do with all this time! What a fantastic problem!
I don’t know why, honestly. I don’t know why a tiny amount of cortisone is helping. I don’t know if this will help my anxiety, or help me reach and maintain a healthy weight. I have about 10,000 questions for my next appointment. I want to know if the plan is for me to take this stuff forever, or if my body and brain can heal.
I do know that this specialist is doing something brave and remarkable in trying this treatment with me. It’s a low-risk treatment, but as I said, it’s a cutting-edge theory. She falls into a movement Dr. Burke Harris describes in her talk:
The single most important thing that we need today is the courage to look this problem in the face and say, this is real and this is all of us. I believe that we are the movement.
Me, too. I’m in.