From First Symptoms to Five Chronic Conditions (Hashimoto’s, Celiac, IBS, GERD, AND CKD)
Early Hashimoto’s Symptoms
I was twenty-four when I got my first autoimmune diagnosis: Hashimoto’s Thyroiditis. Here’s what it officially says about the condition: “Hashimoto's thyroiditis is a chronic autoimmune disease where the immune system mistakenly attacks the thyroid gland, causing inflammation and reducing its ability to produce thyroid hormones.”
I’d gone to my family doctor because I was constantly exhausted, even though I was getting enough sleep. I was gaining weight even though my diet hadn’t changed. Weight had always been an issue, but I’d never gained uncontrollably before. I was cold all the time, so much that I wore long-sleeved shirts in summer. On top of that, my hair was dry, falling out way more than was normal for me, and there was a constant lump in my throat no matter how many dozens of times a day I’d clear it (noisily, much to the annoyance of, well, everyone within earshot). The mood swings were just the icing on the whole big, nasty cake. That doctor recommended I see an endocrinologist.
In 1989, there was precisely one endocrinologist in my area. I’d had a blood test prior to the appointment, so at my visit, I got my diagnosis and a prescription, along with a two-week supply of Synthroid. Dr. L had me drink some water, and he felt my thyroid as I drank it. Then he booked me for a CT scan of the offending gland (they would later discover an enlarged “cold spot” on my thyroid).
Somewhere during that visit, I discovered I’d have to take the Synthroid every day for the rest of forever. The doctor told me what could happen if I stopped taking the pills; none of it was good, I can tell you that. I left that office with a proper respect for taking medication, and in the 36 years since, I can honestly say I’ve never forgotten to take my Synthroid.
What he didn’t tell me was that autoimmune conditions are party animals. They don’t lock their doors, and they love company - preferably that of other autoimmune conditions, but they also vibe with gut issues like IBS and GERD. Nowadays, some endocrinologists will test a Hashimoto’s patient for celiac, and vice versa, because the Hashimoto’s/celiac pairing is quite common. If that had been the case in 1989, I might have discovered early on that I had celiac - while it was still asymptomatic - but alas, it was not to be.
Between 1989 and 2020, I would develop celiac, IBS-D, GERD, and CKD, in that order. In this post, I’ll be talking about the first four as they’re all gut-related.
In 1989, fresh from my doctor’s office with the assurance that all would be well if I took my Synthroid every day, I did just that. My hair stopped falling out. I wasn’t as cold all the time. My nails got stronger. The lump in my throat was still there (and would be, for years), but I got used to it - and to the CT scans of my thyroid every six months for the next ten years. Those were all good things. That’s what was supposed to happen now that I was on Synthroid.
Problem solved? Not quite. My metabolism didn’t magically restart. I didn’t lose a single pound, and I was still exhausted. Foods I’d eaten for years suddenly upset my stomach at random. I had this crazy idea that food wasn’t nourishing me. I got a lot of headaches. I had joint aches that lasted for decades. But there was nothing “wrong” with me. So I accepted my new normal.
“Feeling awful became my normal.”
I dealt with the random episodes of “stomach flu,” which I seemed to experience around five times more than everyone else I knew. I was hospitalized twice for potassium levels so low I thought I was having a heart attack. I became anemic. My vitamins B and D tanked. But there was nothing “wrong,” according to my doctor. He blamed my weight. He blamed my gender. He blamed anxiety and put me on Xanax - but that’s a horror story for another blog post.
Celiac Disease Diagnosis
Things came to a head in the autumn of 2008, nineteen years after my initial diagnosis. One day, I was fine (or what passed as fine in my world), and the next, I couldn’t keep food down. This went on for two weeks, then four. I saw my family doctor. Dr. K told me it was the flu and told me to follow the BRAT diet. In case you don’t know what that is, it’s Banana, Rice, Applesauce, and Toast. I did that for another two weeks.
It was like riding a metal rollercoaster through hellfire. Bananas were no problem. Rice was fine. I loved applesauce. I’d start feeling better. Toast for breakfast. Then I’d get sick all over again. Back to the doctor at the end of week six, no better than I was initially. Dr. K decided it was my anxiety; he ever-so-patiently mansplained that, because I was worried about my stomach being upset, my stomach was getting upset. I left his office genuinely upset after that visit.
During all this turmoil, I missed a lot of work, not only over that six-week timeframe, but in general. At that time, I held a fairly central position at a law firm; our system of record didn’t get updated unless I was there to do it. Unsurprisingly, my bosses were unhappy with me. They were sympathetic, but they had a business to run, and no one else could do my job. I spent a couple more weeks crawling into work for long enough to get critical tasks done before going back home to my bed (and, let’s be honest, toilet). Meanwhile, I was desperately trying to find another doctor.
“It was like riding a metal rollercoaster through hellfire.”
Enter Dr. P, gastroenterologist extraordinaire. I made an appointment with her office for what would be my eighth week of daily vomiting. Needless to say, I wasn’t really in my right mind by that point, and I showed up at her office on the wrong day. The receptionist was there, and I looked so awful by that point that she didn’t have the heart to turn me away. (I found out later she was scared to let me drive away, so I must’ve looked pretty awful.) She called Dr. P, who came into the office on her day off for a brand-new patient she’d never seen before.
She took a complete history. I was in Dr. P’s office that day for nearly two hours. She listened to everything I had to say. She asked follow-up questions. She then scheduled me for an upper endoscopy that same week. She told me to avoid gluten-containing foods until after we could see the test results. She was pretty certain, even before the test, that I had celiac disease. After the test, when it was confirmed, she explained that she suspected I’d had it for years asymptomatically. I hadn’t noticed the pattern, but during that initial two-hour appointment, going back through my food history, Dr. P saw it.
For example, when I followed a low-carb diet, naturally eliminating many gluten-containing starches (pasta, bread, bakery goods), I felt amazing. I did not understand why everyone on the low-carb diet didn’t experience the incredible burst of health that I did. It turns out I was treating my asymptomatic celiac without realizing it. I had energy. I was losing weight like crazy. I felt nourished. Unfortunately, there is such a thing as “too much of a good thing”, as I found out with a low-carb diet, but this, too, is a story for another post.
Unfortunately, Dr. P retired six months after diagnosing me. She wanted to be closer to her grandchildren in another state. I’ll be forever grateful to her for saving my life (the first time). I went into the world again with my two autoimmune diseases hand-in-hand. Take a pill for one, don’t eat gluten for the other. Got it. Good? Not really.
I never really bounced back. In 2008, I was forty-three years old. I’d reached that age where “bouncing back” means you’re almost as good as you were “before”. It took most of six months for my stomach to normalize. I was thrilled to be able to keep food down again. My husband, the family chef, added a whole lot of modified recipes to his repertoire. They were delicious.
Gut Health Struggles: IBS-D and GERD
Fast-forward three more years. My thyroid and celiac were both under control, and had been for some time. But I’m still randomly getting sick. Not as often; every few months, I’d suddenly be nauseated and have to throw up. The nausea would pass immediately afterward. I chalked it up to “something I ate” with the requisite shrug. Also, my bowel movements were never, according to the Bristol stool chart, a Type 3 or 4. More like a 5 or a 6. Here’s a link for the curious: Bristol Stool Chart.
Dr. K was no help. At this point, he was only my doctor because I was too lazy to find another one. In that four-year interim, I’d had gall bladder surgery (that he was convinced was my anxiety at first), gotten addicted to, and clean from, Xanax (thanks, Dr. K), and been told to “just lose weight” and that would fix everything. So I went to him only to ask for a referral to a new gastroenterologist, since my beloved Dr. P was happily bouncing grandbabies on her knee, several states away.
I honestly don’t remember this new guy’s name. I liked him well enough. He had a great sense of humor. The problem was, he didn’t take me seriously, and laughter is not always the best medicine, no matter what the memes say. He also wanted to defer all treatment to Dr. K. New Guy just wanted to do the tests. Bye, New Guy.
I gave up on doctors for a while. I went another three or four years in my current state. Then I turned fifty, and with the so-called Nifty Fiftieth birthday, at least in the US, the medical profession decides to “gift” you a colonoscopy. Enter gastroenterologist number three, whose name I also do not remember because I only saw him twice a decade ago. But he did diagnose my GERD and my IBS-D. He didn’t tell me how to manage those conditions, unless you count “don’t eat garlic and onions” as management advice. I guess he figured I could just look it up online?
So I gave up garlic and onions. I took my Synthroid. I avoided gluten. Life went on…again. My gut issues had taken up so much of my life by this point, it really had become “my” normal. How I felt - low energy, anemic, nauseated after every meal, unpredictable bowel movements - was just “how it was”.
Except it didn’t have to be that way. Not at all.
“I lost too many years because I gave up.”
WHAT I WISH I HAD KNOWN SOONER ABOUT HASHIMOTO’S AND GUT HEALTH
Here’s what I eventually learned — and what I wish someone had told me decades earlier.
The thyroid gland regulates digestion and when it’s off, the whole gut feels it.
Hypothyroidism (in my case, from Hashimoto’s) slows gut movement, which in turn causes bloating, reflux, and bowel irregularity.
Hypothyroidism can reduce tone in smooth muscles, including the lower esophageal sphincter (which contributes to reflux).
Thyroid imbalance can heighten gut-brain signaling, which can trigger IBS-like pain and irregular bowel habits.
The chronic immune activation from Hashimoto’s can make your gut lining more sensitive to irritation.
Hashimoto’s doesn’t “invite” GERD or IBS the way it does celiac, but it creates a body environment (slower motility, weaker gut barrier, extra sensitivity) that makes GERD and IBS more likely to show up.
Some doctors are fatphobic and want to blame everything on your weight. Don’t let them.
Some doctors are misogynists and want to blame everything on being a woman. Don’t let them.
Above all, don’t give up. I lost too many years because I gave up. I wasn’t proactive enough with my doctors. I didn’t push them for real answers. I started this blog as a place to put everything I’ve learned, both medically and through real-world experience, in the hopes that someone reading it won’t give up.
