What People With Newly Diagnosed Thyroid Disease Wish Doctors Would Say

What Should You Know When You are First Diagnosed With Thyroid Disease?

Doctor speaking with patient who has thyroid condition
What should you know when you are newly diagnosed with thyroid disease?. Hero Images/Getty Images

If you've been diagnosed with thyroid disease, you are probably learning a lot from your physician and online resources. Yet, people who have been living with a thyroid condition for some time—those who have "been there”—often have a wealth of knowledge and experience to share that is invaluable.

Ideally, everyone would have the opportunity to talk to several people who have been living with thyroid disease at the time of diagnosis, to get a feel for the condition.

Talking to a person who has been Italy provides more of a lay of the land than your travel agent or travel brochures provide. With patient confidentiality, however, the equivalent conversation with thyroid disease isn't likely to occur. That said, we found the next best thing. What do readers living with thyroid disease wish they had known when they were first diagnosed? What do they wish their doctors had said?

What Should You Know When You Are Diagnosed With a Thyroid Condition?

Readers at Verywell stepped up share the one thing they wish their doctor had told them when they were first diagnosed with thyroid disease. Let's take a look at their advice, combined with some of our tips, and share how it may help you begin your thyroid journey feeling a less alone and a more empowered.

You Need a Knowledgeable Doctor

One key starting point is that some people wish that their doctor had said, "You're going to need a knowledgeable doctor."

Many people are diagnosed by their family doctor or internist, but primary care physicians have varying interest and experience in managing thyroid disease. Your first question should be to learn whether or not your primary care doctor feels comfortable treating you, or if you need to consult with an endocrinologist.

Even if you see an endocrinologist there is more you need to know. It's important to remember that your doctor can't read your mind. Some people wish for tons of information about their diagnosis, while others just want to get their prescription as quickly as possible. Of course, most people fall somewhere between these extremes. People often speak of getting inadequate information, for example, "my doctor just said to take this Synthroid and I'd be back to my normal self in two weeks." To avoid this scenario, let your doctor know up front how much information you wish to have about your condition. Ask as many questions as you need, and don't be afraid to ask again.

You Need a Doctor Who Considers Both Your Physical and Emotional Concerns

With any medical condition it's important for your doctor to consider both your physical and emotional concerns, but this is especially important with thyroid disease. Thyroid disease can be a great mimicker, and can both be associated with or look like depression or anxiety. Emotions such as frustration are almost the rule when beginning thyroid treatments. A good physician can help you understand roughly how long it will take until you are feeling "normal" again, and can suggest methods for coping while you wait.

You Need a Doctor Who Can Listen and Explain

With thyroid disease you should have a doctor who is both a good listener and a good communicator;  explaining your condition and answering questions in clear terminology. Studies tell us that physicians commonly interrupt, and in doing so, can miss obtaining important information.

Having a doctor who can explain your diagnosis in understandable lay terms allows you to be an active participant in your medical care. If you don't understand terminology, ask for an interpretation. Some people living with thyroid disease have expressed the wish to not only have a doctor answer questions, but understand the importance of those questions.

When you are first diagnosed you need a doctor who can take the time for you to feel better—at least with your plan of action—before you leave the exam room. Many people mistakenly think that the treatment for thyroid disease will simply mean taking a pill and that's all. You should know that thyroid medications such as levothyroxine are not miracle pills.

People also wish that their doctor could talk more about the many different and varied symptoms experienced by people with thyroid conditions. Part of this discussion should include how your symptoms relate to your thyroid condition;  the mechanism behind the symptoms. It's much easier to feel empowered when you know what is going on medically and can set reasonable expectations. An understanding such as this also provides a way for you to know when you need to speak up if your blood tests are normal—but you are not. There are options for managing symptoms beyond medicating them or dismissing them.

Finally, if you feel that your doctor is suggesting that "it's all in your head" or that you just need medications for a mental illness, it may be time to shop around. What you most likely need is the correct thyroid medication. (Yes, some people will need medications such as an antidepressant, but that should be a secondary discussion after making sure your thyroid condition is not the cause.) It's critical to have an understanding of not only how thyroid disease affects you physically, but how it affects your mind and emotions as well.

Don't Blame Yourself For Your Symptoms

People with thyroid disorders who are taking their medications faithfully, but still feel "something isn't right," may go into self blame modem, and self blame is the worst aspect of the disease for some people. This self blame can in turn contribute to the depression and anxiety so commonly found when people are overmedicated or undermedicated. It's not just doctors who may suggest "it's all in your head." Some people, upon hearing that their thyroid levels are "just fine," assume that the "all in your head" syndrome is plaguing them. You can't reclaim that time of self blame, but you can educate yourself going forward.

Your Symptoms May Get Worse Before Getting Better

People who have lived with thyroid disease wish they had known that sometimes an increase in thyroid dosage can make you feel worse before you feel better. This can affect you in more than one way. If you feel worse after the increase you may feel that the dose is wrong. Unfortunately, this may prompt some people to call and have their dosage decreased, compounding the problem. Knowing this may occur can also help you feel more patient while you wait. Good things can take time, but unless you know this you may feel discouraged. When you change your dose it can take a long time for your body to adjust to the change in dosage and heal.

Know Your Treatment Options: Thyroid Medications Are Not All the Same

When you are diagnosed, especially with conditions such as Hashimoto's disease, you should know that not all medications for hypothyroidism are the same. On top of that, every person with thyroid disease is different. Some people do well with almost any medication while others have problems with several. If you are one of the latter, it can be helpful to work with a physician who can help you experiment with medications and dosages. It may be that compounded thyroxine works best.

Some people have allergies to the fillers or binders (exicipents or inactive ingredients) in thyroid drugs. For example, people with hayfever or lactose intolerance may not tolerate the acacia and lactose in Synthroid. An example to illustrate this point is a person who was allergic to the fillers and binders in most manufactured brands (such as Levoxyl, Synthroid, and generic levothyroxine). This person had difficulty taking any medication until she had thyroxine made in a hypoallergenic base (compounding) and that solved the problem.

You Should Know That Some Foods Interact With Synthroid

Since thyroid medications are taken on an empty stomach, it can be difficult to know the best time to take your thyroid medication. There are a number of ways to work around this. One person set her alarm for 4 a.m. to take her medication and went back to sleep. This worked for her.

When You're Diagnosed, It Helps to be Realistic

Some people who have been living with thyroid disease believe it would have been helpful for their doctor to tell them they would not feel the same as they did prior to their diagnosis. Having an awareness of this, and that many adjustments may be necessary, might help you learn to adjust your thinking and habits sooner. One person said that if she had been aware of this, she would have switched medications sooner (this person switched to Levoxyl and finally Armour thyroid.) She also said that she would have learned to take care of herself sooner, learning about what works and what doesn't work for her body.

Bottom Line on What People With Newly Diagnosed Thyroid Disease Wish Their Doctors Would Say

The following quote from one reader, "Brenda," is a perfect summary. Of all of the things she wishes her doctor had told her, one stands out as the most important thing:

"While everyone is created equal, we are all individuals. A medication that works for one person may not work for another. I will work with you to find the best medication for you. I will not treat you like a dippy blonde who doesn't have two brain cells that fire simultaneously. I will take you seriously because I want you to feel better! That is my job."

The best thing you can do is find a doctor who will take you seriously, and provides the compassion and respect that she would expect herself given the same diagnosis.

Learn more about what people wish they had known about thyroid disease in these thyroid tips for the newly diagnosed patient.

Sources:

U.S. National Library of Medicine. Thyroid Diseases. Updated 09/13/17. https://medlineplus.gov/thyroiddiseases.html

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