Thyroid Patients Are Talking. Is Anyone Listening?

Thyroid Patients Are Talking. Is Anyone Listening?

Is your hair falling out? Are you tired no matter how much you sleep? Is your brain fog so bad you walk into a room and forget why you’re there? Are you struggling with your weight when the things that used to work suddenly don’t? Are your nails brittle or developing ridges? Are you cold when everyone else is comfortable? Do you look in the mirror some days and think, What the heck is happening to me?

Then comes the doctor’s appointment. Your labs are pulled up on the screen, you have ten things you wanted to talk about, and suddenly you can remember three. You know your symptoms have changed, but exactly when? Was the fatigue worse before or after the medication change? When did your hair really start shedding? What was your TSH at the time?

And that question you absolutely were going to ask? You remember it in the parking lot.

If that sounds familiar, here’s something you should know: thyroid patients have been telling researchers the same things we’ve been telling each other for years.

More Than 12,000 Hypothyroid Patients Spoke Up

In 2018, researchers published the results of a large survey involving 12,146 people with hypothyroidism. Among respondents frustrated with their treatment, 77% reported problems with fatigue or energy, 69% with weight management, 58% with memory or thinking, and 45% with mood. Overall treatment satisfaction was a median of just 5 out of 10. [1]

And this number really stands out: 54% reported changing doctors more than twice because they were dissatisfied with their hypothyroidism treatment. [1]

Of the more than 12,000 people who completed the online survey, what they described sounded awfully familiar. The fatigue. The weight struggles. The brain fog. The frustration.

And many thyroid patients are telling us something else: they don’t feel heard.

Researchers Asked About That Too

Researchers at the University of Aberdeen asked people with thyroid disease about their experiences with healthcare professionals. More than one-third said they had not felt heard at all by either their GP or consultant. The majority also did not feel sufficiently involved in treatment decisions or empowered and comfortable enough to provide input into their thyroid care. [2]

The researchers summed it up plainly: “Patients did not feel they were heard enough by healthcare professionals.” [2]

If you’ve ever sat in an appointment wondering whether you should even mention another symptom because you expect it to be dismissed, minimized, or treated in isolation without anyone looking at the history behind it, you already understand what these researchers found.

The question isn’t whether patients are talking. They are. The question is how we can help make sure what they’re saying becomes part of their healthcare conversation.

Here is something you can do

A Harvard Physician Says: Write It Down

Dr. Jonathan Marron, a physician and Director of Clinical Ethics at the Harvard Medical School Center for Bioethics, gives patients some remarkably practical advice.

In a Harvard Health article about medical gaslighting, he recommends keeping a journal of your symptoms, preparing a brief and precise explanation of your concerns, writing down the questions you want to ask, bringing someone with you when possible, and making sure you understand the plan and what happens next before you leave. [3] Think about how different that is from walking into an appointment and trying to reconstruct the last six months from memory.

Instead of saying, “I think this started sometime in the spring,” you can say, “It started March 12. It happened again March 18. By April, I was experiencing it several times a week.”

Now you have something concrete to track and something concrete to talk about.

Your doctor has your lab results, but you have everything that happened between.

That’s your story—the exhaustion, hair loss, brain fog, weight changes, sleepless nights, medication changes, good days, bad days and everything else that happened while you were living your life. So write it down while it’s happening. Use a notebook. Use your phone. Use an app. When something changes, record it. When you think of a question for your doctor, write it down right then. Don’t wait to recall it three months from now.

One little note may not seem important. Neither does one symptom, or one lab result. But over time, those individual pieces become something incredibly useful:

Your history.

What If Keeping That Record Were Easy?

Dr. Marron’s advice is remarkably practical: keep a record of your symptoms, prepare your concerns and questions, and bring that history with you to your doctor.

Now there’s a tool built to help thyroid patients do exactly that—and more.

Meet Trellith, a new web-based health companion designed specifically for thyroid patients. We took everything Dr. Marron recommends—tracking your symptoms, preparing your concerns, writing down your questions, and bringing an organized history to your doctor—and built it into Trellith. Then we added even more tools to make the whole process easier.

Instead of trying to remember months of symptoms, medication changes, lab results and questions at your next appointment, Trellith helps you capture them as they happen and keeps them together in one organized health history.

Track your symptoms and their severity. Follow your TSH, Free T4 and Free T3 over time. Keep your medications, supplements, weight, notes and questions together.

If you use MyChart or another app, you don’t have to start over to give Trellith a try. Simply download your records as a PDF or take screenshots, and the Trellith Smart Lab Scanner can scan and sort that data into your Trellith record in a snap. Review it, confirm it, and you’re ready to go.

And the best part? There’s nothing to download. Trellith is a web application that works right from your laptop or phone. Super simple to set up. Super simple to use.

Trellith turns what you’ve been tracking into something you can actually take to your doctor: a dated Doctor Visit Brief containing your symptom history and severity, thyroid labs, medications and supplements, notes, questions you’ve saved, and conversation helpers.

Print it. Bring it. And when your doctor asks how you’ve been feeling, you don’t have to remember—you can show them.

Try Trellith free for a week and start building the health history you’ll take to your next appointment.

References

1. Peterson SJ, et al. An Online Survey of Hypothyroid Patients Demonstrates Prominent Dissatisfaction. Thyroid. 2018;28(6):707–721.View the study on PubMed

2. Montagna C, Zangelidis A. People’s Experience with Thyroid Disease: Survey Report. University of Aberdeen Business School, 2023.Read the University of Aberdeen report

3. Godman H. What to do about medical gaslighting. Harvard Health Publishing, April 1, 2024. Featuring guidance from Jonathan M. Marron, MD, MPH, HEC-C.Read the Harvard Health article