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Experiencing Hypothyroidism After POTS Diagnosis? Why You Suddenly Developed It and Diseases Linked to POTS

A young woman with light brown hair sits up in bed, holding her head with one hand while sipping a glass of water with the other. She wears a beige shirt and has a blood pressure cuff strapped to her arm, with the digital monitor on the bedside table showing a heart rate of 108 bpm. Next to the monitor is a container labeled “Iodized Salt,” emphasizing her concern about salt intake and its effects on her health.

You’ve been faithfully following your high-sodium postural orthostatic tachycardia syndrome (POTS) management plan, only to get slapped with a hypothyroidism diagnosis. What gives? If you’re experiencing hypothyroidism after POTS and wondering, “Why did I suddenly develop hypothyroidism?” or asking, “What diseases are associated with POTS?”, you’re not alone. 

Let’s explore this common medical mystery together. 

Why Did I Suddenly Develop Hypothyroidism? The POTS-Autoimmune Link

POTS is a syndrome that’s often associated with other existing health issues like cerebrospinal (CSF) leaks, autoimmune problems, mast cell activation, and Ehlers-Danlos spectrum disorders. In some case reports, people whose POTS was secondary to a spinal CSF leak saw their condition improve or resolve after an epidural blood patch, the gold standard for spinal leaks, was administered. That suggests your POTS and the health issues it can lead to, including thyroid changes, might be part of a larger chain of events. 

Research shows that one in nine POTS patients has Hashimoto’s thyroiditis. Studies reveal POTS patients have elevated autoimmune markers, which means your immune system might be targeting tissues like your thyroid gland. However, as research has shown, this autoimmune connection can sometimes be due to one mechanism among many that your body uses to prevent overproduction of T4 in response to too much iodine in your body. 

These mechanisms are under the umbrella term of the Wolff-Chaikoff Effect, which is still not fully understood but results in hypothyroidism due to iodine excess, with various ways this could occur outlined in research. A longitudinal study in China after the introduction of iodized salt clearly showed that autoimmune thyroid conditions like Hashimoto’s were directly linked to iodine overconsumption along with hypothyroidism rates.

Unfortunately, many autonomic specialists tend to focus on addressing symptoms of POTS, and many endocrinologists tend to prescribe levothyroxine broadly for hypothyroidism without digging for primary causes. 

For example, research shows that POTS can be secondary to spinal CSF leaks. A spinal CSF leak occurs when spinal fluid seeps out of a hole in the dura, the membrane surrounding the spinal cord and brain that transports protective fluid. As the body works to achieve homeostasis, it may pump more blood up to the head to increase intracranial brain flow, compensating for the volume difference in CSF through a mechanism known as the Monro-Kellie doctrine. Additionally, shifts in CSF volume within the head can cause the hindbrain to sag, putting strain on this area of the brain, which plays a crucial role in controlling the autonomic nervous system, potentially lowering blood pressure and spiking your heart rate. Physicians treating the leak with a correctly administered epidural blood patch can bring an end to POTS if this POTS is secondary to a spinal leak, as demonstrated in research. Yet, this connection gets overlooked, allowing other problems like thyroid dysfunction to creep in–often due to changes in patients’ diets as they are working to manage their new-onset health issues.  

The Iodine Trap: Your High-Salt POTS Diet Backfiring

Here’s where things get interesting. POTS patients might be told to consume 3,000 to 10,000 mg of sodium daily, which is way above the standard 2,300 mg limit for sodium. You might be flooding your system with iodine if you’re using iodized table salt for this. The NIH notes that 

iodized salt in the United States contains 45 mcg iodine per 1,000 mg of sodium in the form of iodized salt.  Each 1,000 mg of iodized salt contains about 45 mcg of iodine, which adds up to 450 mcg of iodine daily from salt alone if people are consuming 10,000 mg of sodium daily from table salt. This is far above the 150 mcg recommended daily consumption for adults who are not lactating or pregnant, and often not the only source of iodine in US diets. 

Why does that matter?

  • Iodine excess can trigger autoimmune thyroid disease (like Hashimoto’s) or outright hypothyroidism.  
  • One study found that Hashimoto’s patients given just 250 mcg of iodine daily developed thyroid imbalances, even in iodine-deficient regions.  
  • Consuming 10,000 mg of sodium in the form of iodized salt daily means you’re swallowing at least 450 mcg of iodine daily from table salt alone; adding other sources of iodine can easily place you above the upper tolerable limit of 1,100 mcg set by the National Institutes of Health. However, as studies have shown, for patients who are sensitive to iodine, even 250 mcg/day might be too much over time as iodine continues to accumulate in the body, causing hypothyroidism or worsening autoimmune thyroiditis.  

Worse, spinal CSF leaks may disrupt pituitary function, altering how your body processes iodine, with this causal link not well-explored in research. That well-intentioned salt intake increase your healthcare provider recommends could be the cause of your POTS symptoms worsening.  

What Diseases Are Associated With POTS? The Autoimmune Parade  

POTS rarely travels solo. Other issues to look out for besides hypothyroidism include:

  • Hashimoto's thyroiditis: Your immune system mistakenly attacks your thyroid gland, slowly damaging it and causing hypothyroidism.
  • Ehlers-Danlos syndrome (EDS): Your body produces defective collagen, leading to overly stretchy tissues, hypermobile joints, and unstable blood vessels.
  • Mast cell activation syndrome (MCAS): Your mast cells, which are part of your immune system, release too many chemicals too often, causing widespread, unpredictable allergy-like symptoms throughout your body.
  • Celiac disease: Consuming gluten, found in foods like wheat, barley, and rye, triggers your immune system to attack and damage your small intestine.
  • Sjögren’s syndrome: Your immune system attacks moisture-producing glands, sapping tears and saliva, causing dry eyes and mouth.

Your Thyroid Recovery Plan: Ditch Iodized Salt for High-Sodium Diets and Self-Advocate  

Ready for the good news? Your symptoms might be fixable. Make sure to work with an iodine-knowledgeable clinician, such as a dietitian informed on iodine, to create a tailored plan that stays within your iodine budget. Some example suggestions are listed below.   

  1. Ask your clinician about swapping iodized salt for non-iodized versions like sea salt or Himalayan pink salt if you need to consume high amounts of sodium to manage POTS.  
  2. Track your iodine intake with apps like Cronometer.  
  3. Partner with your care team. Ask your endocrinologist to test thyroid antibodies such as TPO and TgAb to assess for signs of autoimmune attacks on your thyroid. Make sure to bring research that demonstrates how this can occur, such as the body’s response to iodine overintake, which involves reducing T4 production. Ask your physician to continue monitoring these numbers regularly as you work with a dietitian to assess your daily iodine intake amount, focus on co-factors for thyroid health, and address any other nutritional deficits to observe if your thyroid numbers improve.  

Spinal CSF leak patients report worsened headaches, nutrient absorption, and secondary POTS symptoms when their thyroid issues flare. Balancing iodine could stabilize your health on multiple fronts.  

Join the Fight for Better Care

Clinicians rarely warn POTS patients about the risks of excess iodine, but you now know several pathways for how POTS correlates with thyroid disorders in the research and how changes in your diet as you manage your POTS  can contribute to thyroid dysfunction. Watch our webinar to explore iodine overload as a possible cause of your sudden-onset hypothyroidism.

Make sure to bring all information to your clinical team and only make changes under their guidance. They typically will not know this information, so you may have to advocate for them to read the research, as there are extensive research studies on this information.

We’re launching a patient-powered movement to reform care for often misunderstood conditions like spinal leaks, POTS, and hypothyroidism. Sign up for our Momentum Makers membership program!

Momentum Makers Members will receive weekly impact reports highlighting global advocacy wins, showcasing how their financial contributions are making a difference as we create hope for the future.

From POTS Chaos to Thyroid Balance: Your Recovery Journey Starts Now

Experiencing hypothyroidism after a POTS diagnosis is a red flag that suggests there might be a cause-and-effect sequence that’s exacerbating your symptoms. Start the investigation process by calculating your daily iodine consumption, challenge assumptions, and join patients worldwide as they channel frustration at the lack of quality thyroid care into action.