If you’ve ever felt dismissed by doctors or confused by your thyroid symptoms, you’re not alone. I was told my condition was permanent. But after years of tracking patterns and testing hypotheses, I discovered something most professionals never mention: iodine.
Let me share how I figured it out and why I’m co-hosting a webinar with a registered dietitian to help others avoid what I went through.
The thyroid Facebook groups are full of patients in agony. I remember one woman with hyperthyroidism who said she was just happy when an endocrinologist could read a thyroid panel. Most focus on diabetes instead. That’s where the money is.
More than 10 percent of Americans have hypothyroidism, and over 1 percent have hyperthyroidism. Yet many people remain undiagnosed, according to the American Thyroid Association. Those with hypothyroidism are typically given levothyroxine as the only option.
Levothyroxine is one of the most prescribed drugs in the U.S. A recent Yale study suggested it is being over-prescribed, with limited exploration of root causes or alternatives.
Few doctors ask patients how much iodine they’re consuming. Yet excess iodine is a known trigger for thyroid dysfunction, especially in people with autoimmune thyroiditis like Hashimoto’s. It can also worsen existing hormone imbalances and push people toward hypothyroidism or hyperthyroidism.
When I first developed subclinical hypothyroidism, my TSH was moderately elevated, but my free T4 was normal. I was told I would have hypothyroidism for the rest of my life.
That didn’t make sense to me. I knew my spinal CSF leak had impacted my pituitary. In patient groups, I had seen many others with leaks suddenly develop thyroid issues too.
My hypothyroidism started after I began eating vitamin-fortified eggs. These eggs were high in vitamin D and B12 but also high in iodine at about 240 micrograms per day from a total of four eggs.
That doesn’t sound like much. The recommended daily allowance for iodine is 150 micrograms although that’s a generalized recommendation from the World Health Organization based on population studies and not individual needs. Research already shows that people who are iodine-sensitive may function better on a slightly lower amount, such as 50-100 mcg. Every person is different.
In one study from the 1990s, researchers gave iodine-sensitive individuals a 250 microgram supplement. Many developed hypothyroidism. One even developed hyperthyroidism. Most improved after stopping iodine.
In my case, I refused levothyroxine for as long as I could. My doctors insisted that subclinical hypothyroidism would progress. Eventually my TSH crept above 10 mIU/L, and I gave in. I took one tiny dose.
That triggered a week of misery. I posted on Twitter and another woman with a spinal CSF leak replied. A single dose of levothyroxine had thrown her into hyperthyroidism and landed her in the hospital.
When I asked my endocrinologist for alternatives, she told me there were none. So I pulled out a notebook and started mapping the timeline.
The clearest change in my diet had been the eggs. I told my endocrinologist my theory. She said, “I’ve never heard that iodine affects the thyroid.” I was stunned.
I went to a dietitian. She told me she wasn’t comfortable managing thyroid cases. She pushed dairy on me to meet protein goals, goals she had set for me. I was there to try to manage my thyroid. I had to explain that dairy can be high in iodine. She was surprised.
Left to figure things out on my own on my own, I stepped down to three eggs per day. Almost immediately, I felt a metabolism shift. I was hungry every night and started losing weight as I ate walnuts and chocolate hungrily from the pantry, struggling desperately to calm the hunger pangs that persisted as I ate and ate. This has consistently been my first clue that my TSH is dropping.
My endocrinologist dismissed it. My dietitian at the time implied I had an eating disorder and told me to stop losing weight.
Still, I pushed forward. I continued to request regular labs. After a month at 120 micrograms of iodine per day, I dropped down to two eggs per day. Within weeks, my TSH came down from the 11 to 14 mIU/L range into the 6 to 7 range.
Eventually I discovered an additional culprit: iodized salt in a new brand of chickpeas that I had introduced right before I went into overt hypothyroidism from subclinical hypothyroidism. Just dipping my finger in the liquid made my skin smell like antiseptic. Once I replaced that brand with a no-salt version, my TSH dropped further to 4.6 mIU/L.
My endocrinologist discharged me. My labs were now close enough to normal, and I was not on medication. I was no longer worth managing, apparently.
But I still had a problem. I had food sensitivities, couldn’t take supplements, and the easiest foods for me to eat–eggs and fish–were high in iodine.
My PCP and I agreed that I would reintroduce iodine, believing this iodine reintroduction might make me mildly hypothyroid again. What we didn’t know was that sudden reintroduction when your TSH is already dropping can slingshot you in the other direction and that my PCP should have ordered more frequent tests than every three months to keep track of my thyroid during iodine changes.
The issue wasn’t just how much iodine I was eating. It was how rapidly I was shifting my iodine intake.
My reintroduction triggered months of hyperthyroidism. I later found a research article about a man in the U.S. who also slingshot from hypothyroidism to hyperthyroidism. He had had iodine sensitivity and avoided iodine-rich foods and developed a goiter and hypothyroidism for several years.
His endocrinologists put him on a 150 mcg/day iodine supplement and his hypothyroidism improved–rapidly–which instantly puts out caution signs for making sure to be slow about adjustments. But his doctors didn’t seem to know this according to the article and didn’t warn him as he started eating seafood on top of the iodine supplement, excited that he could eat iodine-rich foods again without symptoms. Sure enough, he returned to the clinic with terrifying palpitations and had become hyperthyroid. The article ends simply with the endocrinologists stopping the supplement but with no recovery from hyperthyroidism noted.
I’ve been there too. But what no one tells you is that recovery from hyperthyroidism is not linear. It takes time and patience to rebuild trust with the brain’s feedback loop between the hypothalamus, pituitary, and thyroid.
I had the opportunity to speak at a continuing education event for registered dietitians in North America. One dietitian immediately recognized that her patient’s symptoms might be from a spinal CSF leak. She used the research I shared and created a meal plan that took iodine sensitivity into account.
I’ve also had the chance to collaborate with Vincci Tsui, RD, the founder of Weight-Inclusive Dietitians in Canada. Together, we’re co-hosting a webinar.
🎟️ Join us live on June 19 at 7:00 PM EDT for a one-hour, evidence-based presentation and discussion with real-life experience on iodine and thyroid health. You’ll leave with practical tools to understand your own dietary iodine intake.
Can’t make it live? Stay tuned to get the recording for $20 once it’s released. We’ll email you as soon as it’s ready.