My Thyroid Story
I know I haven’t posted in quite a while, and I promise I have a lot to bring you, dear reader, up to speed on. I’ve been dealing with some health issues that have massively impacted my day to day life, especially where it comes to what I am eating and drinking… Let us begin:
Last summer I was diagnosed with Hashimoto’s thyroiditis, which is an autoimmune disease. My immune system had launched a full-on war with my thyroid gland, leading to a huge inflammatory situation right under my nose that I wasn’t even aware of. What I did know was I didn’t feel right- my emotions were all over the place, at one point I even told my husband that I felt like there was a demon living inside me (true story). I had horrible joint and muscle pain in my elbows and forearms, which I attributed to my previous desk job, and months of physical therapy didn’t seem to help. Even stretching daily, applying topical salves and sleeping with inflatable water wings to keep my arms straight at night didn’t help (which is a great look by the way, very sexy). I had worsening headaches that had increased in frequency. My left big toe was numb to the touch, and the tingly numbness had crept up to my shin. I had changed jobs, and my new position was very physically demanding, so I didn’t think too much of it when all I could do was go to work and sleep. I worked four 10 hour shifts in a row, and at least one of my days off was dedicated to recuperating. My hair stylist pointed out that I had a whole head full of baby hairs- regrowth following a stressful life event or hormonal imbalance she guessed. “Stress?” I thought, “Oh yes, I’ve had little bit of stress recently”. Let’s unpack my knapsack of dread:
Our year started out with house hunting- and let me just say that I am incredibly lucky and thankful to even be in a position to buy a home. I will keep it real with you though, being a first-time homeowner comes with a very sharp learning curve. Nothing prepares you for all the jargon, ins and outs of applying for a mortgage, paperwork, realtor BS, county permit department BS, participating in your first six figure bidding war, plus the immense responsibility of signing up for the largest amount of debt you’ve ever incurred in your short life thus far. It is A LOT. It is overwhelming. It is all consuming.
While we were in escrow, my car got totaled. Fortunately, no one was hurt- my husband and I actually weren’t even home when it happened. We had spent the night at a friend’s house, and arrived home to find my car smashed up onto the sidewalk with a note on the front windshield. A kind soul in the neighborhood had written down the license plate number of the offending car before it dipped from the scene. I hadn’t even wrapped my head around the situation before a police officer arrived to help me report the incident. He ran the license plate number, found it was registered to multiple people (didn’t know this was even possible? But, DMV). He picked the address that was in my neighborhood and went to do some investigating. In about a half an hour he was back, and with the driver’s insurance information! The police officer said he went to the address, but no one answered the door. The car with matching license plate number was parked outside, and had matching damage with my car’s paint. And the driver had left his car unlocked! So the police officer went into his glove box and found his insurance information! All of this is completely miraculous. This story has so many moments in it when things could have gone WAY WORSE, but at the end of the day I was out of a car and had another thing on my plate.
Not very long after moving into our new home, my boss went out on an unplanned medical leave. He had a routine surgery that lead to complications, an extended ICU stay, and months of convalescing at home. He was the head of my department at the hospital, and I was second in command. Due to his absence, I stepped up and took on most of his responsibilities in addition to my job. Right around this time, the other dietitian at the hospital left, and I had to pick up the slack for her job as well. I had stretched myself so thin trying to straddle the yawning gap between where the department was and where it should be, that to say I was under a bit of stress would be the understatement of the year. It was at this precarious moment in time when I was hit with two disasters. The first was of natural causes and the other, (for those of us in healthcare) a force much larger and fearsome, called CMS.
The firestorm of October 2017 that hit northern California was truly frightening. I remember waking up early that Monday morning to the smell of smoke. I turned on the news, and there were active fires all over Napa and Sonoma county. I watched footage of Kaiser hospital evacuating patients, and saw the flames jump a four-lane highway. On the map the flames were right on my parent’s house, I called and called but no one answered. The fire in Carneros was headed our way, and the road to Napa was impassable. This was a fear that I had never felt before. It was so strong that I went numb. I was in survival mode. My mind went to the hospital- in the case of a natural disaster, the hospital was designated as a place that would shelter evacuees, and my department would be responsible for feeding them and our existing patients, whether we had electricity or not. I had to get to work.
The next week was a blur of ash, smoke and Nixle emergency alerts blowing up my phone. My parents had evacuated to Santa Cruz, but my childhood home was still in danger. The fire was less than a mile away from the hospital, the incident command center had taken over the conference room, and half of the kitchen staff had evacuated and were unable to come to work. We made do with what we had, and when the cafeteria full of first responders gave us a round of applause for the frozen pizzas we were able to serve them- I broke down in tears. I was so thankful that we could do something to shed a little light in so much darkness.
My husband and I ended up evacuating to San Francisco; our home was in an area under “advisory evacuation”, and we heeded the sheriff department’s advice. I dumped a drawer full of important documents in a box, and grabbed my favorite Frye boots. My husband packed his favorite t-shirts and our beer and wine cellar. The traffic getting out of town was surreal. Cars piled high with personal belongings, pulling trailers and everything else you could imagine. National guardsmen in tanks directed traffic at intersections. I cried again, but this time for all the people who had to stay and toe the line between safety and danger.
A couple weeks after returning to our thankfully intact home, the loudspeaker at work announced state inspectors were on site for a survey. This is like an audit for the hospital, except not just for financials, but for policies, procedures and anything else related to patient care. Unfortunately for me, they had a dietitian on their team. And she was training someone. So no stone would be left unturned, and she knew what stones to look for. Prior to their arrival, myself and a consultant the hospital had hired identified several areas in which our department could improve. Most of these items were foundational to the department, and would take months to change. And I, with very little free time on my hands, would have to be the one to change them. So, it was at this very opportune moment that the surveyors turned their magnifying glass on me and my department. The following days were painful. My heart was in my throat each time they asked me a question I had no answer for. I wondered why I hadn’t asked these questions earlier when my boss was around, and why I was in this position that was so clearly a lose-lose.
When the survey findings came back, my department had several faults to answer for. In order to correct each issue, an action plan must be written out, with 30 days to effectively be put into practice. As mentioned before, many of these issues are big ticket items- some so large that hospitals will often hire an outside consultancy to fix them. The people above me kept telling me that I should be able to do this, and I kept telling myself if I had asked the right questions before, this would already be done. I felt guilty for my ignorance, and ashamed that I couldn’t deliver what they were asking for. I couldn’t sleep at night. My husband and I were able to get out of town for Thanksgiving that year, and as we drove back into town my body broke out into hives. They were painful, large red patches rotating all over my body, persisting through benadryl and a shot of prednisone. On the third day I woke up from a nap with a tongue so swollen I couldn’t talk, and it was difficult to breath. I texted my mom to come meet me, and drove myself to the hospital. I was crying by the time I checked in at the ER because I was so scared. My mom sat with me as they infused me with fluids, more prednisone, and told me that I “must’ve eaten something”. But I knew that wasn’t it. I knew it was from stress. My body had been telling me for a long time what my brain didn’t want to hear. The mere thought of going back to work had sent my body into a full-on revolt.
Call it Stockholm syndrome, or undying loyalty, but I didn’t leave my job for another six months. On paper, I had achieved a great deal in the last ten years, and had worked myself into an enviable position. The reality of the situation was quite different, and leaving a highly specialized position in a very specific career meant entering a job market where my credentials didn’t mean a whole lot. It was a scary place to be, especially at an age when you feel a little late to the party for starting over.
Nonetheless, this is the part of the story where things start to turn around.
Joining my husband’s health insurance meant getting a new doctor, and a requisite face to face appointment. I needed new scripts for my meds, referrals for mental health and more physical therapy. I had noticed that my throat was swollen, lumpy in fact, and I wanted another ultrasound of my thyroid. (I had an ultrasound done several years ago when my primary care doctor noticed a lack of symmetry in my thyroid, and actually underwent a biopsy to determine that it wasn’t cancer. This should have been my red flag for Hashimoto’s, but what you don’t know, you don’t know). I had even choked on a piece of meat over Father’s Day, so this swollen thyroid was starting rear its head in a way that I could no longer ignore.
The ultrasound showed a lot of red, my thyroid was wrapped up in a massive inflammatory process. My labs came back very abnormal- on the graph view that Kaiser provides, my levels were literally almost off the chart. (For a point of reference, my TSH should be between 1-2, and my lab came back at 58). My visit with the endocrinologist was pretty one sided, she gave me the shpeel on why her approach was the right one, and didn’t go into why this was happening besides that I was “unlucky” and “sometimes this happens”. I was in shock. I knew something was wrong, but to be diagnosed with a disease, let alone a chronic disease that wasn’t going away, was too much for my brain to handle.
I gladly took my medication, and I started to feel SO. MUCH. BETTER. My aches and pains disappeared, and I felt buoyant with the hope of getting to a more positive place, physically and emotionally. I briefly researched Hashimoto’s, but since I was already given a life sentence, I got on with moving forward with my life. I cooked a lot, spent quality time with my husband wine tasting, and I finally heeded friend’s words of encouragement and started this blog. I felt agency in my life for the first time since leaving home for college, and it was both scary and exhilarating.
During this time, I continued to have headaches, and random days where I could not get out of bed. I emailed my endocrinologist about my symptoms, and when the labs she ordered check my adrenal function came back normal, she advised me to see my primary care doctor (who has even less training on thyroid diseases, but okay). It all came to a head over New Year’s Eve, which I can refer to now as my first Hashimoto’s “flare” since being diagnosed. Following the sudden death of my uncle in a car accident and following burial/family reunion/Christmas celebration, my husband and I took to Santa Cruz for a cozy NYE. We were there for a couple days, and had stocked up on delicious food and many bottles of sparkling wine and Champagne to ring in the new year. Unfortunately, by New Year’s Eve everything hurt. I had a headache that wouldn’t go away, a stomach ache that nothing helped, and I was so tired I went to bed at 8pm. The following day at work I was so nauseated I almost went home. The next day Alex had to catch a flight, and I was feeling worse than ever. I was bloated, alternated between abdominal cramps and waves of nausea, and my head was ringing. I spent the rest of the day in bed sleeping. When I woke up in the afternoon, I thought “There must be something I can do”.
I took to the internet, first Googling “Hashimoto’s and constipation”, then “Hashimoto’s and headache”, and I learned that these are normal symptoms that can be worsened during a “flare”. Ahah! Finally, a word for what was going on! I Googled on, and found that many people with Hashimoto’s have food sensitivities, and that eating these foods can incite a flare. My background in clinical nutrition had been focused on diabetes, heart disease and tube feeding- not so much on the intricacies of autoimmune disease. So, I was learning this all for the first time. “Use your training!” I kept telling myself, but this Autoimmune Paleo diet I had found was tricky.
I need to confess something. If I had a dollar per mile for the miles and miles of eyerolls I’ve given in response to people’s questions about the Paleo diet, I’d be in Aruba right now. Maybe Mykonos. I don’t know. Somewhere nice. Anyways, I’ve subscribed to the school of thought that a mostly plant-based diet, full of whole grains was healthy- and that if you can swap around some ingredients and call cookies Paleo, and therefore healthy, then I want nothing of it. So I was more than a little skeptical when it came to following anything Paleo, but- I was weak, tired, in pain and beaten down by my current way of life. I had to change something, and why not start with what I was putting in my mouth.
That was almost a month ago, and I’m happy to say that I’ve come a long way since then. I’m pooping almost everyday, which if you haven’t had the luxury of truly regular bowel movements, you know the victory I’m talking about. My stomach doesn’t object every time I eat, and the bloating isn’t as much of an issue. Thankfully the headaches are at bay, and I’m getting the hang of meal planning with no grains, nightshades, dairy, nuts or seeds. I’m focusing on nutrient rich meals, and even eating organ meats. Part of this healing process is figuring out how to manage stress, and I uhh, wasn’t doing that before. I had an insane amount of stress, and not tools to deal with it.
So here I am. I feel like I’ve gone through hell, and I’m coming out the other side. I want to use this platform to continue to talk about my life, what I’m eating and drinking, recipes and fun things I like to do. I also want to talk about what it means to be healthy, the scary business of listening to your body, and most of all, I want to talk about how to take care of ourselves in the wild world of 2019.
XOXOXO,
Alida
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