"A landmark guide for patients": a #PatientsUseAI how-to for thyroid patients

Advocate "Thyroid Mary" Shomon publishes the first definitive guide we've seen for a disease. There's lots in it for any patient.

Many thanks to Julia Schopick for the pointer to this 6,000 word breakthrough article by patient advocate and NY Times bestselling author Mary Shomon (LinkedIn), of the Sticking Out Our Necks Substack. I instantly sensed that I’ve never seen anything like this article. It’s deep, wide in its coverage, well researched, and 100% patient-focused - because it’s written by a patient. And most exciting to me, it’s therefore a straight-up article about how to do medical self-care using artificial intelligence.

Here’s a screen capture from the top:

In the interest of time I asked ChatGPT to absorb it and answer whether, based on all its conversations with me about empowerment and technology, this article is as much of a breakthrough as I think. Its answer: yes.

I asked it for a description, not a summary. My prompt:

Please produce a <=500 word *description* (not necessarily a summary) of what this says and what it includes. If you can, judge whether this seems to be as much of a breakthrough as I think it is.

Here’s its response

This article by Mary Shomon, “How to Use AI to Take Control of Your Hormonal Health,” is a landmark guide for patients—especially women—looking to use artificial intelligence for managing thyroid issues, hormonal imbalances, menopause, and related health challenges. It doesn’t merely introduce the idea that AI could help; it provides concrete, step-by-step instruction on how to use AI today, with real tools, prompts, and examples. That alone sets it apart as a genuine breakthrough in consumer-oriented health writing.

What the Article Covers

1. AI’s Emerging Role in Hormonal Health
   Shomon frames AI as a response to decades of dismissal and mismanagement in women’s health, where conditions like hypothyroidism and perimenopause are routinely underdiagnosed. She emphasizes how AI’s pattern recognition and memory are now helping both professionals and patients notice what humans often miss.

2. How Doctors Use AI
   Tools like Koios DS and ThyGPT are helping physicians interpret thyroid ultrasound images with more accuracy and fewer unnecessary biopsies. AI is also aiding in personalized treatment plans and early risk prediction for menopause-related complications.

3. How Patients Use AI
   Shomon walks readers through specific, practical ways to use consumer-facing AI tools:

   • Tracking symptoms and labs

   • Interpreting test results

   • Preparing for doctor visits

   • Planning meals and exercise

   • Managing mental fog and mood swings

   • Building personalized health timelines

   • Using wearables with AI integrations for metabolic tracking (e.g., Nutrisense, Oura, Lumen)

4. Tools and Apps
   The article catalogs dozens of relevant tools, including general-purpose AIs (ChatGPT, Claude, Perplexity), wearables (Apple Watch, WHOOP, BioBeat), metabolic trackers (Signos, Lumen), mental health apps (Wysa, Youper, Bearable), and hormone-specific trackers (Clue, Flo, Symptive).

5. How to Talk to Your Doctor About AI Findings
   Shomon includes respectful, collaborative phrasing for raising AI-generated insights with physicians—guidance that helps patients avoid triggering defensiveness or skepticism.

6. Privacy and Limitations
   She acknowledges risks, particularly around data privacy and AI hallucinations, and offers tips on minimizing exposure, including using burner emails and choosing HIPAA-compliant platforms when possible.

7. Prompt Examples
   The article features detailed sample prompts for various needs—meal planning, symptom tracking, lab interpretation—modeling the kinds of input that generate useful, tailored results from AI.

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Why This Is a Breakthrough

Unlike most consumer health articles about AI, which remain abstract or focus on future potential, this piece is granular, realistic, and actionable. It gives readers not just permission but instructions to use AI in the gaps left by rushed or inadequate medical care.

Its tone is empowering, yet cautious, striking a mature balance between enthusiasm and realism. It’s also intersectionally aware: the article highlights how traditional health standards—based on male data—have failed many women, and how AI can help re-analyze that data to uncover previously ignored insights.

This could easily become a foundational text or blueprint for #PatientsUseAI in hormonal health—and a model for articles in other disease domains.

End of GPT’s output

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I agree: this article could be a blueprint, a template, for #PatientsUseAI articles.

I knew her when :-)

While working on this post today a number of things started ringing a bell, and this evening I realized: OMG, this is “@ThyroidMary” from Twitter days! Indeed, a search turned up some ancient history where we’d crossed paths, with some other famous names mixed in.

Honestly, for me it’s almost breathtaking to see: all of a sudden so many things come together. Example: I’ve often mentioned the “father” of the e-patient movement, “Doc Tom” Ferguson, whose 1996 book(!) Health Online had a chapter on how to get an email account … and now Mary includes how to get a burner email account, to be anonymous if you want to. And all the practical things she’s now gathered and cataloged with the skill of a professional writer, which so closely match how Doc Tom shone the light on the path for all of us.

And 1996 is when Mary got started, too.

On the one hand, this moment is a turning point, “the end of the beginning” of #PatientsUseAI. And yet on the other hand, it is just the beginning.

What disease community will be next to get a comprehensive guide like this?

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Mary Shomon is an internationally-recognized writer, award-winning patient advocate, health coach, and activist, and the New York Times bestselling author of 15 books on health and wellness.