This is me at 13, just before this whole saga began.

Endocrinology and I first got to know each other when I was 13. When I hit puberty, my thyroid went completely nuts. While I ate loads of food, I remained a featherweight and my period started, then stopped. My eyes started to bug a little, a classic sign of hyperthyroidism, and on a visit to my grandma’s house that summer, she realized something was off and suggested my parents take me to the doctor.

This began a really difficult phase of my life. Since my metabolism was sky high because of my overactive thyroid, I could eat whatever I pleased in any quantity. I made batches of raw cookie dough (without the eggs, but including whole sticks of butter) and hid it in my room to eat. I ate loads of PB & J. I remember my dad talking about the mixing bowls-full of cereal he ate when he was that age – so my eating habits didn’t seem weird. I was my parents’ first kid, so teenagers were new territory.

I’d been struggling with insomnia for a while, which is another symptom of hyperthyroid. I would lay in bed, totally amped up, staring at the ceiling. I don’t know if I ever told anyone. I figured it was par for the teenage course. I was full of nervous energy. My heart rate was way too high. My memory says my pulse was 120 or 130 at the doctor’s office when my parents took me in at my grandma’s suggestion, but my nurse’s brain is saying, “Gah! No! That’s too high!”

I remember the day the doctors were deciding with my parents on the treatment plan. They were talking about iodine therapy. I now know that could have destroyed my thyroid. All I knew then was that they were deciding what to do with me and I didn’t have a say.

They ended up choosing a med called PKU that I would take every day. It would take my thyroid level down to normal levels. I don’t know what the doctors intended to do, or if it went as planned, but I came down from my hyperthyroid high with a crashing thud.

I gained 30 pounds in just a few months, had difficulty regulating my eating habits to match my new metabolism, hit puberty again and for real, and sank into very low spirits. I felt fat and I hated myself and I had to take pills that were CAUSING it. It was horrible.

Eventually, they tapered me off the meds and I was fine for years until I got pregnant with One. Thyroid hormones and lady hormones do a delicate dance that even as a nurse I don’t fully understand. Instead of being hypER, like it was when I was a teen, my thyroid got sluggish (hyPO) each time I got pregnant and for months afterward went haywire (an autoimmune response called Hashimoto’s Disease, characterized by low thyroid function mixed with flare ups of hyperfunctioning. Exacerbations can be caused by pregnancy, stress, and other factors). It caused me to lose the baby weight and get scary skinny while fighting with anxiety and depression. It took a couple of babies to figure out.

After One, I had a temporary endocrine doc who didn’t know me well. My midwife with Two, a controlling woman, handled my endocrine care and took me off the thyroid meds immediately after Two’s birth. I was plunged into a dark time where I struggled to bond with my baby and was deeply depressed. I would stare at Two and wish I could feel something. It wasn’t until she was about nine months old that I started coming out of my pit.

When we moved upstate, I found an endocrine doctor I really liked for my third pregnancy, but she moved to the Midwest and I had to find someone else. The next doctor was also great – kind and attentive. And then, in his mid-50’s, he went for a run one morning and dropped dead. I got a letter about his unexpected death days after I’d seen him in his office, alive and well, and again was without a doctor.

I had been reading about thyroid stuff online – don’t do that unless you want to go insane – and found the name of an endocrinologist in our area who had a good reputation with the community of people online who seemed to have figured out How To Fix Your Thyroid.

I went to see him, and asked for what the Online Community thought was the Best Treatment. He was like, “Nah, let’s do it my way.” So we did. And we got into a pattern where I would be miserable at home – exhausted, achy, lethargic, sleeping for 10 hours a night and resting for 2-3 more hours during the day – and I would go to the endocrinologist, who is always running late, and I would sit in his quiet waiting room reading a book for the longest time, undisturbed.

By the time I got called into the exam room, I would be feeling pretty dang good. It was a time when I didn’t have alone time built in to my schedule, and only did things for me out of desperation once every few months – and when I say “things for me,” I mean, a solo grocery run or a brief trip to the library by myself.

All the misery forgotten, when he asked, I’d say I was fine, or if I did mention my symptoms, he’d say, oh, that’s normal for someone with a ton of kids. He always asked about my proptosis, which is the fancy word for bug eyes, as if this was a new thing rather than something I’d had for years that, to me, had no bearing on my current condition (Plus, it dug up bad memories of a middle school bully who had coined the helpful term “the ugly girl with the bug eyes”).

When I was pregnant, I always felt terrible and my dose was always increasing to keep up with trying to grow a person. When I wasn’t pregnant, my doctor would decrease my meds, and I would be even more miserable. Since I was always pregnant or losing the baby weight, he was frequently confused about what my weight was supposed to be, and so would interpret weight loss or gain as a function of my thyroid when he was looking at my lab results later in the day. I would complain to the Chaplain in between visits, but I didn’t have the wherewithal to go hunting for a new doctor. Better the devil you know, they say. Plus, my doctor is a Christian and was non-judgemental about my huge family, and that is no small thing.

I finally recognized the pattern and started taking notes about how I was Really Feeling between visits. In analyzing my own labs, from my reading, and in talking to my midwife, I realized that I start feeling like garbage when my labs are at subclinical levels – which means, when my numbers are technically in the normal range, for me, that feels like crap. I found out that if I didn’t take my meds the day of my appointment, that my lab levels appeared to be more in keeping with how I really felt. I’ve never told my doctor I do this. I got this idea from the Thyroid Gurus online. (As a nurse, I feel like I have to say I don’t advise doing things like this and not telling your doctor).

So when it came time for my next appointment, I laid it out. “I feel like you aren’t listening to me when I tell you how I’m feeling. I am miserable, and you keep decreasing my meds and telling me it’s just me. I’m fine when I’m here, but at home, I am barely functioning.” He blinked. I could tell his feelings were hurt. But he started working with me after that. We tried a new med, and he started listening to me and asking for my input about changing my dose when it was needed.

With my last two babies, we finally mastered decreasing my post-baby meds gradually so that I wasn’t thrown off a cliff or over-corrected.

I’m far enough down the road from Seven’s birth that I just had a six-month visit with the endocrinologist. Because of his availability, it was actually an eight-month visit. When I’m pregnant, I have to go in once every 4-6 weeks, and after the baby is born, I’m often there every three months for while. Eight months was a tremendously long time. It felt like I’d sprouted wings.

The last time I’d gone in was right before the Chaplain and I had our marriage blow up. During that period of time, I’d lost a ton of weight, and only regained some of it. I started exercising again, and had a solid self care practice. I had decreased my meds to compensate for the period of time when I wasn’t eating or sleeping due to the marital stress, and hadn’t increased them to the prescribed levels again because I was still a little underweight.

Here’s the story I was telling myself* about my upcoming visit: I would tell my doctor I felt pretty good, and then he would see my labs, forget what I told him about my weight and how I was feeling, flip out, and send me an email and tell me to decrease my meds. I was sure, like the very first time over 20 years ago, that I would gain a ton of weight and be tired and miserable again.

Here’s what really happened. I went in. The medical assistant made a mistake and kept calling people in ahead of me. There was a steady stream of people coming in, and being led back to the exam rooms. It was now nearly 45 mins. after my appointment had been scheduled, and I was still sitting in the waiting room. Usually, even with my doctor running late, I’m only gone from home for an hour for a visit. I finished the book I’d brought, and read the appendix.

Finally, I got called back. My doctor looked at my weight. “How much do you usually weigh?” He asked. I told him. I told him after a family crisis that I’d actually lost a lot more than that, and lowered my thyroid meds, started exercising, and gained some of it back. He mentioned that my heart rate was extra low. “When do you want to come back in?” he asked at the end of our visit. “Is six months ok?”

It sounded good to me. I went to the in-house lab to have my blood drawn. My favorite phlebotomist was there. We always admire each other’s hair, and she uses a butterfly needle on me even though my veins are like hoses. I hadn’t seen her in a long time.

I left to go home, and later got a call from the endocrinologist. I couldn’t answer, but I knew he’d send an email, too, and he did. I couldn’t look at that right away, either, but when I was finally settled in at home, I pulled up my doctor’s internet portal and logged in. Ever since that first missed call, I’d been tending to my heart, trying to be ready for whatever he might say.

He was increasing my meds back to what they were before I titrated them on my own.

I don’t know if I’ll ever figure out this thyroid thing. According to the internet, I would have to radically change my diet and start taking dessicated this and that in order to really feel amazing. Dang it, I don’t have space for big lifestyle changes right now, besides the ones I’m already doing. I’m not ready to give up my Swedish Fish. Or Brownies. Or chocolate chip cookies. And despite his internet recommendation, my doctor turns out not to be into desiccated anything.

But I’ve found that being on the team with my doctor rather than the object of his care, and all the work I’ve been doing on myself lately, has helped me to get to a much better place even without following all the other advice out there.

With the benefit of the reading I’ve been doing, I recognized that the fear and foreboding I felt going in wasn’t based in truth. It was based in worry about the future, something I can’t control, and worst-case scenarios. I couldn’t control what my doctor chose to do about my care. But I should have known from experience that my doctor has demonstrated now that he’s willing to listen to me and include me in decisions about my care.

As it turns out, my visit caused much less pain than expected. Worst case scenario, I would have finished my book and seen my favorite phlebotomist, and even that sounds like a pretty good deal.

* “The story I’m telling myself” is a Brené Brown trick from Rising Strong.  It’s a way of admitting that what you’re saying is just the way YOU see the world, and it isn’t necessarily 100% true.

I’ve met a lot of phlebotomists in my life, both personally and at work. Enough to know that if they’re good at their job, you will barely feel a thing. If there is a hierarchy of phlebotomists, my favorite one is at the top, with great personal style, a friendly demeanor, and no pain/no bruise blood draws.