For many people, seeking therapeutic support for medical trauma is a difficult task. As one friend said about medical trauma: "it’s the one we are not allowed to talk about."
In my own experience, US-based therapists told me quips ranging from "trust your doctor" to "expect to not get help in this lifetime but you can be a martyr."
I Did Not Want to Be a Martyr
I wanted to be well. I wanted to not live in agony. The beginning of my health journey was instigated by nature with Ehlers-Danlos syndrome causing a greater propensity for my bones to herniate—and herniate they did with a small thoracic disc herniation, the calcified protrusion cutting slowly into my dura, the lining around my spinal cord, until it popped fully through one day and my symptoms went from mild from a tiny leak to horrific as the dam burst open.
Procedural Errors and Blaming The Female Body
While spinal CSF leaks are theoretically easily repaired in many cases, I quickly found that many physicians did not follow best practices in diagnosis and treatment, not understanding basic concepts such as the laws of physics involved in lack of buoyancy to the brain and of the issue of trying to inject too viscous a fluid (blood) through too narrow a needle, thus causing many more accidental spinal leaks through accidental punctures.
Like many women, I was told that my body was at fault for being injured by these physicians rushing procedures and lacking foundational procedural knowledge.
The Start of My Independent Research
I refused to let interventional physicians touch my spine after the last injury in 2022. I decided to sit down, review all my images, network with physicians to determine how they would approach the problem, network with engineers to discuss flow dynamics with them, talk to other patients, review the research across disciplines, identify the common errors happening in epidural blood patches, and create hypotheses for these errors occurring.
The Dismissal of Hypothyroidism
In contrast to spinal leaks which are incorrectly declared as rare, when I first developed hypothyroidism, knowing that more than 12% of Americans will develop a thyroid disorder in their life, I was naively expecting a much more streamlined and knowledgeable experience. My PCP described my spontaneous initiation of hypothyroidism as common among patients. According to her, people just randomly developed hypothyroidism, and it was all downhill from there. A life sentence. I needed support and hope–not an “oh, well” attitude.
My Hormones Didn't Make Sense
Nobody could explain to me why I would have spontaneously developed hypothyroidism and why my free T4 levels, free T3, and T3 uptake levels were all perfectly fine if my thyroid was supposedly failing simply because I had a slightly elevated TSH. Why also was my free T4 jumping up at times to a high-normal level while my TSH fluctuated at a subclinical hypothyroidism level? To me, this didn’t look like one hormone (TSH) being elevated to try to stimulate the thyroid to work. This looked like free T4 trying to break free from upper normal limits.
No One Tested for the Obvious
I went to an endocrinologist next and asked her to run more labs, specifically looking at the pituitary, knowing that my pituitary is slightly enlarged on my brain MRIs as a sign of intracranial hypovolemia (low volume of CSF in the head). My prolactin levels were within normal range so the endocrinologist dismissed the possibility of pituitary involvement. Of note, for research on patients with known spinal CSF leaks, not all had elevated prolactin levels. However, anecdotally, many women report in Facebook groups–and even to their female dietitians but not their male interventional physicians typically–having breast growth and galactorrhea..
Later, in my review of research when presenting at a conference for registered dietitians on iodine, thyroid disorders, and spinal CSF leaks, I did find a case study in the research that showed a direct link between a spinal CSF leak and hypothyroidism where a spinal CSF leak had actually flattened the pituitary rather than caused it to become engorged. This flattening can happen due to many reasons such as impaired CSF flow when the brain sags at the back which then causes accumulation in other areas. Some people may not have brain sag at this particular area and experience adequate CSF flow even with a lot of loss and thus end up with engorgement of the pituitary. This is why it is so important to not run binary yes/no tests on symptoms and imaging signs for spinal leak patients due to so many different presentations in how people respond to lack of buoyancy for the brain.
Why the Pituitary Matters
In the case study of central hypothyroidism directly caused by a spinal CSF leak, the patient had a mildly low free T4, low-normal free T3, and non-detectable TSH levels as her pituitary was compressed. Of note, it is the pituitary gland that makes TSH and the thyroid that makes T4 as the two "talk" to each other in a feedback loop. That patient had total recovery after a blood patch. This is why it’s important that physicians address spinal CSF leaks as a gravity problem and not simply a pain problem. Numbing a patient’s pain isn’t going to unsquish their pituitary.
However, there is little recognition on how a slightly enlarged pituitary on imaging that doesn’t produce elevated prolactin levels can impact the body’s iodine use and thereby the body’s ability to manage the pituitary-thyroid feedback loop correctly.
There have been multiple cases noted of people with spinal leaks having Hashimoto’s thyroiditis at the same time as a leak although the connection is not explored. As Hashimoto’s is present in my own family and only in the women who have spinal leaks, we can consider some hypotheses. For example, there are studies that say that overconsumption of iodine can trigger or worsen autoimmune thyroiditis (the category for Hashimoto’s). If spinal CSF leaks are making people more sensitive to iodine due to disruption of the pituitary-thyroid feedback loop, perhaps this is a connection to explore.
I Wasn't Even Tested for Hashimoto's
However, of note, I was not checked for autoimmune thyroiditis (such as Hashimoto’s) and only asked for these tests via my PCP in 2025 where all were normal.
Iodine as the Missing Variable
Now, looking back on that time and knowing what happened, I know that the actual events happening behind the scenes were first an introduction of fortified eggs rather than regular eggs which increased my daily iodine consumption from about 120 mcg/day to 240 mcg/day. This caused a baseline of subclinical hypothyroidism.
Months later, I had shifted to a new brand of canned chickpeas that had not labeled on the can that they used iodized salt. This is what had pushed me into overt hypothyroidism.
My Tipping Point
Highly stressed at my inability to get myself out of hypothyroidism and frustrated at my inability to take medication, I woke up one morning and sat down with a pen and paper and wrote out the sequence of events. With a fairly consistent diet each day due to secondary MCAS, I could identify easily the one major change: the introduction of the fortified eggs.
I Floated My Hypothesis
I researched iodine and found that it greatly impacts the thyroid. I floated my hypothesis to my endocrinologist that my body was sensitive to iodine due to my spinal CSF leak. My endocrinologist told me that she had never heard of iodine impacting the thyroid.
I Took Control
I made the executive decision that we would move forward with this plan of slow reduction of iodine with regular bloodwork as I monitored symptoms. Sure enough, as I lowered iodine, I quickly felt my metabolism come raging back with severe nighttime hunger which is my personal sign of dropping TSH levels.
The Doubt of Others
My endocrinologist expressed confusion and told me she had never heard of diet affecting health conditions. I went to a dietitian who assumed I had an eating disorder because I was excited at having a faster metabolism as I could finally eat again since I had so many malnutrition areas to cover.
This was a time when I needed a high level of mental and emotional support, and yet, just as clinicians have gaslit me about having symptoms, I have found that they have gaslit me about being on the right track–from immediately feeling relief from a blood patch while the radiologist told me this was impossible to feeling my hunger kick in dramatically after reducing iodine intake.
I often think of the poem “If–” by Rudyard Kipling: “if you can trust yourself when all men doubt you, But make allowance for their doubting too. If you can wait, and not be tired by waiting [...].”
There was a nuanced approach here where I needed to trust myself but also allow the fact that my physicians could be right while reviewing research to verify what they were saying. There was also the factor of time where I found that many US therapists would be highly supportive of me at our first encounter and then within three weeks of weekly sessions declare my case a lost cause if I had not miraculously healed.
I remember the morning I got my test results back weeks after I had started my iodine decreased and my metabolism had roared out into full force. I ran downstairs, sobbing. The results were in and they were undeniable. I had dropped down from consistent double digits of about 11-15 mIU/L into the 6-7 mIU/L range. That morning, I don’t think I cried just because my hypothyroidism was reversing due to my sleuthwork and strategy but also out of relief that I wasn’t crazy. I had felt what I had felt when what felt like the whole world had doubted me and told me to give up with a repeating message: Trust doctors. Give up hope. Go back to levothyroxine which incapacitated me. Levothyroxine is the only option.
I cried because I had created hope for myself. I cried because I had validated myself.
Dropping Out of Care
After reaching the point of having my TSH under 5 with all other normal labs, I was told by my endocrinologist that I did not need monitoring by her since I was euthyroid (thyroid hormonally balanced) and not on medication.
The Misstep of Reintroduction
I returned to my PCP where we discussed the reintroduction of iodine-fortified eggs. We made the decision to reintroduce them, and unfortunately, my PCP did not recognize the biomechanics issue of thyroid patterns in recovery. As described in some case studies, when a patient is making rapid progress from hypothyroidism to euthyroidism, re-introducing iodine too fast can cause hyperthyroidism.
And that’s exactly what happened to me.
The eggs were reintroduced. The iodine levels surged. And my body flipped—hard. From crawling through the sluggishness of hypothyroidism to now being flung into the wired, heart-pounding chaos of hyperthyroidism.
It was the kind of shift that would terrify most people, and it did terrify me. But it also confirmed what I’d suspected all along: that my thyroid was simply responding to my environment with exquisite sensitivity in known iodine-response mechanisms termed the Wolff-Chaikoff Effect (leads to hypothyroidism) and the Jod-Basedow Effect (leads to hyperthyroidism).
My rule of thumb: if there are mechanisms known well enough to have been named, then you are not alone in your body choosing one or both of these routes at different times. You are not crazy to have this experience as patients are so often told in an isolating effect by clinicians. “This only has happened to you after eating iodine” is always a common phrase. To which I say: “well, make sure to let Wolff, Chaikoff, Jod, and Basedow know.”
I thought maybe therapy would help me hold what was happening. That finally, with this proof in hand—labs, patterns, lived experience—someone would be able to help me process not just the symptoms, but the loneliness. The erasure. The gaslighting.
But instead, I found something else. Something that rattled me even more than the flip itself.
Because when your body tells the truth and the world still calls you unstable and says you are alone in your experiences, what happens next?
I will go into my hyperthyroidism experiences in the next issue of my story and discuss the need for community (including physicians, therapists, dietitians, peers, etc) to support patients as part of the larger healthcare ecosystem.
What I’m Doing Now
Recently, 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.
