Advocating for Yourself with Hypothyroidism

Back in the “old days” of health care, you may have had a family doctor who treated you and your family for decades. The kindly doctor spent time with you, knew your family and personal history, and—gasp—even made house calls! At the same time, doctors were never questioned. A doctor’s word and decisions were final. And since few patients had the ability to research their health conditions, there was little discussion of alternatives and options.

Health care today is quite different. You probably see many different doctors in even a year’s time. Appointments are, unfortunately, all too often fast and rushed. Your health insurer or HMO may limit your access to tests or treatment options. Even with advances in medical care, it sometimes feels like it’s harder than ever before to get diagnosed and treated quickly and accurately.

With everything moving so quickly, it’s important to be an empowered patient, advocating for yourself to achieve the best possible health. It’s particularly important when you have an underactive thyroid, for several reasons:

• Hypothyroidism symptoms are common and nonspecific, which can make the condition harder to diagnose and manage.
• There are a number of blood tests involved in diagnosing and managing hypothyroidism. You need to understand the different tests, and what the results mean for you and your health.
• There are several different options when it comes to medications. Finding the best treatment for you means you need to know and understand those options.

How can you be an empowered patient and advocate for yourself? Here are some helpful guidelines to get you on track to better health.

Being an active participant in your health care starts with information. That means you need to do your research. With the internet, you now have information about your thyroid health at your fingertips, including books, medical journals, official treatment guidelines, and informational videos. And, of course, you can connect on social media or join support communities to exchange experiences and advice with other thyroid patients.

At minimum, I recommend that you become knowledgeable about the following topics:

• The signs and symptoms of hypothyroidism and hyperthyroidism, so you can tell more quickly if you may be undermedicated or overmedicated
• Tests for hypothyroidism, and both the reference range and optimal treatment targets for each test, including thyroid-stimulating hormone (TSH), free thyroxine (free T4), free triiodothyronine (free T3), reverse T3 (RT3), and thyroid peroxidase antibodies (TPO), to start
• All your thyroid hormone replacement medication options, including brand name and generic levothyroxine tablets, levothyroxine capsules and oral solution, liothyronine (synthetic T3) tablets, and brand name and generic natural desiccated thyroid (NDT)

Remember to stick to reputable and trusted sources for your research. There are many websites designed to mislead you with overblown claims into buying products and services, and promising miracle cures for your hypothyroidism and related symptoms. A simple rule to follow: If it sounds too good to be true, it probably is!

Being an advocate for yourself is essential, but you also need to be advocating for yourself with the right healthcare provider for you.

While an endocrinologist is very important if you have thyroid cancer, nodules, or Graves’ disease, many different types of healthcare providers may be a good choice to provide careful, personalized treatment of your hypothyroidism. So don’t overlook general practitioners (GPs) and primary care physicians, gynecologists, osteopathic and naturopathic physicians (DOs and NDs), nurse practitioners (NPs), and physician assistants (PAs) as the right provider for your hypothyroidism care and management.

Also, be sure to select a healthcare provider who views your health care as a partnership, and who takes the time to truly listen. If your provider rushes you through appointments, or is disrespectful, dismissive, or condescending, those are signs that you need to move on to another practitioner.

Keep in mind that even with the right provider, you will still have limited time during your appointments. That’s why you’ll want to come fully prepared.

• Put together a short agenda of your key issues and questions—with a copy for your practitioner—and put the most important issues at the top of the list.
• If you have started or stopped any medications or supplements, bring a list, along with dosage information.
• Take notes—or ask if you can record your appointment. (Most smartphones have a built-in audio recorder.)
• And if you’re feeling depressed or brain fogged, consider bringing along a friend or family member to take notes and help you stay on track with your questions and concerns.

Researching your thyroid condition is important, and you will want to share important information with your practitioner. But keep the following tips in mind:

• Try to limit the amount and length of materials you share. You don’t want to overwhelm your practitioner with huge stacks of articles, books, or research papers.
• Send selected information to your healthcare provider ahead of your appointment whenever possible, along with a quick note that summarizes the question(s) you’re hoping to discuss. If you walk in with a huge stack of reading material, your healthcare provider may pay more attention to your research materials than to you and your questions.

Don’t hesitate to speak up and ask for what you need from your healthcare provider. (If he or she won’t listen, or dismisses your requests without a good reason, then it’s time to find a new provider.) But do remember that how you speak up matters; if you angrily demand a particular test or treatment, you are more likely to be met with resistance. But if you view your relationship with your provider as a respectful partnership, you are more likely to have success. For example, rather than saying, “You need to prescribe NDT for me, now!” you can say, “I need to discuss the pros and cons of taking natural desiccated thyroid to treat my hypothyroidism.”

Finally, I want to leave you with some advice I frequently give to my coaching clients: Don’t ever forget that YOU are the CEO of your own health care. YOU are in charge, and no one cares about—or understands—your healthcare needs better than you!