Q&A: World Thyroid Day

Jeff Houtz, global sr. product manager at QuidelOrtho, explores the challenges women face in the diagnosis of thyroid conditions, including biases in diagnosis and screening barriers.

Why do thyroid conditions continue to be so difficult to diagnose, particularly in women?

So, I think probably the easy answer is that it’s chronic versus acute. Whenever you have a disorder or disease state, and it’s one that’s chronic in its development you have a lot of symptomology overlap. It’s not acute. If you get the flu, you know you have the flu, and you know exactly where it came from.

But if you have a chronic disorder, especially a thyroid disorder the symptom can mimic many different other things. They can be very nondescript, nonspecific. You can get fatigue. You can have anxiety. You can have all kinds of issues that don’t necessarily point to a specific cause, and that can be very difficult.

And those symptoms developed over time too, and the fact that this is compounded over time also add to the fact that it’s difficult to diagnose. I think the other part too is without having some sort of threshold for both the patient and the physician to rationalise and understand where these symptoms came from, you can then tend to rationalise them away.

It’s easy for people to just say, “Oh, I’m just, I’m fatigued because I’m tired,” or I have anxiety because of some other thing in your life that might have caused anxiety rather than looking for a root cause of maybe why you feel that way rather than just looking at the symptom.

Are there any symptoms that are typically overlooked, like in general or specifically for women?

Yeah. A lot of them, again, because of the nonspecific nature of them, fatigue is probably one of the most frequent ones. Whether you’re hyperthyroid or hypothyroid, on either end of the thyroid spectrum, fatigue is one of the primary symptoms.

Hyperthyroidism, you’re sped up and so you’re fatigued because your body can’t run at 100 miles an hour. And with hypothyroidism, where things are slower, you’re fatigued because your body’s just working slower. When you go to see a primary care physician or something like this, fatigue is probably easily misdiagnosed or underdiagnosed as part of a grander scale of things rather than just looking at a symptom. That’s probably one of the first ones.

Mood changes and anxiety – think about what humans are going through on a regular basis. Your mood and anxiety can change for various reasons, so that’s another one that doesn’t really have a specific cause to it and, unfortunately, that’s not enough to trigger a clinical workup.

It can be categorised as “maybe you’re just having stress in your life or you need a mental health break” or something like that, rather than looking at it as a symptom that has something to do with something physical in nature.

Probably menstrual irregularities are another issue that I think get underdiagnosed or misdiagnosed when it comes to thyroid being the cause, whether it’s cycle length or severity or frequency.

Again, that’s where an OB-GYN would come in and they tackle that as a symptom rather than, again, potentially thinking, is there a different root cause to why you have cycle length, severity, and frequency issues rather than just something solely having to do with your reproductive cycle. Could it be also something to have to do with your thyroid hormones? So, that’s another area that’s often attributed to that.

And, of course, weight gain or weight loss is many times, sadly, attributed to diet and lifestyle. Do better, go to the gym, have a better diet. These are some of the suggestions, because of the nonspecific nature of early diagnosis and because again, as we mentioned, it’s a chronic disorder, so it develops over time it’s easy to explain these things away and it’s easy for a doctor and even a patient to go down the wrong path before they can come to a conclusion.

You’ve mentioned how these symptoms are obviously very easily explained away as everyday issues, so, how would you go about being tested and diagnosed with it?

So, being tested and diagnosed is something that it probably crosses into education, both from the patient standpoint and from the physician standpoint, are going to play a role in getting an improved diagnostic experience, and part of that is helping you to appreciate when a more thorough workup might be necessary. And as individuals, we want to take some level of responsibility for our own health.

And so, when something feels off, you’re going to have to figure out a way to express that to your physician. This is not how I normally feel. They’re only going to look at you as whatever came through the door and the symptoms that you have or have shared, and it’s not their fault. They don’t know you that well, but you know you and everybody should be aligned with who they are and what they feel like normally.

So, if you’re looking to get a proper diagnosis and to get that started, your own advocacy is important, especially when it comes back to women of childbearing age – not that it can’t happen earlier or later, and especially if you had a child, it’s easy just to say you had a baby, and underlying symptoms can sneak in.

Disorders can sneak in under the guise of something else and so that’s where explaining that to your physician hits differently and asking them specifically: “Can you please look at underlying causes which might be a thyroid?”

What impact would you say a delayed diagnosis would have on a patient long term?

Probably the easy answer is quality of life – that’s not to make quality of life insignificant, it’s not like that’s not an important concern, it certainly is – but that quality of life in a delayed diagnosis is impacted and compounded over years.

Think about being fatigued, having cognitive issues, brain fog, and weight struggles and mood swings for years, anxiety for years, and all those things being treated individually as a symptoms rather than an underlying similar cause of a thyroid issue, and that takes its toll over years.

So, any kind of delayed diagnosis can have impacts on health physically and mentally and how you emotionally take care of yourself. And again, pregnancy comes into play again because a lot of these disorders, if they are underdiagnosed, or misdiagnosed, especially when it comes to pregnancy, if you have a disorder that’s a preexisting one or one that develops while you’re pregnant or one that develops during the postpartum period and it’s totally missed because it’s a symptom that can easily be attributed to something else especially during pregnancy.

It’s important to see that these delayed diagnoses could have long-term effects, not just on you as an individual, but even in this case it would be passed on to the child. It’s a severe risk that has to be taken seriously for mother, and child. Even if you’re not pregnant, it’s still it still takes a disruptive toll on your life to go through this year after year and not get diagnosed.

So, can earlier thyroid detection help prevent disease progression or further complications?

Yes, of course. Anything you can do and usually to find out sooner. I don’t know if it’d prevent disease necessarily for thyroid disorders, but the earlier the diagnosis, the faster you can get on to the treatment.

But that only happens when comprehensive testing is done, and it’s only done when specific tests are ordered. And it’s also important for when those results to come back for the person who ordered that to understand what those results mean. So, it’s more than just one source it’s a collective picture.

Obviously early detection is always important, and that helps you get you to an informed clinical decision point, so you know where you’re going, and this is the reason why, and here’s the symptomology and here’s the testing that came through. We understand what the data is and what the symptoms show. That’s an empowering moment in the patient journey.

Ordering the right test, ordering the right bank of tests, knowing how far to go on the algorithm of ordering tests, but then also understanding what you’re looking at. Putting that puzzle together. And I think that’s one area that can be improved. So yeah, the earlier you can detect, the sooner you can put that puzzle together and the better impact you’re going to have on that negative quality of life that we talked about because of the chronic nature of the disorder in general.

Why do you think women often experience longer journeys for conditions compared with other chronic illnesses?

That’s probably part of it too. The inequities in care can stem from just being a primarily a female disorder. Thyroid disorders usually hit more females than males, 8-1 for hyperthyroid, for example. There’s 8-1 women to men ratio, so it generally impacts women longer or more frequently.

So, timing is an issue because you can have hormonal changes, of course, from a teenager to a young adult, and then during your childbearing years, you can have hormonal changes if you happen to become pregnant or just during your normal menstrual cycle. Then later you have premenopause and postmenopause and all these things where hormones are changing.

Because hormones change and because they change often, it’s difficult for a physician or any kind like a frontline caregiver to point to something and to nail it down and say, “This is the issue,” because the clinical background’s changing constantly. It’s this nonspecific symptomology that could be attributed to a host of different disorders, masking an underlying thyroid condition.

It’s habit. I think some of the things that impact the experience is even something like insurance. Do you have insurance? Do you not have insurance? That goes back again to inequities, including socioeconomic inequities. Are you more likely to go get something fixed if it’s chronic and you have insurance versus if you don’t have insurance, you’re just going to put up with it?

There are differences in that aspect too of why the experience takes longer for thyroids than for other disorders because, again, the thyroid is so important to your life. It runs pretty much everything. That little tuft of tissue in the bottom of your neck pretty much runs your entire system of things and keeps it going, but it’s usually the last thing people look for. They treat the symptom rather than the root cause.

You said that it’s like an 8-1 women to men ratio, does the amount of research reflect that ratio?

So, the amount of research that goes into any kind of thyroid disorder, like when research is done on Graves’ disease, which is hyperthyroidism, or Hashimoto’s disease, which is hypothyroidism, then they typically have to use primarily females because that’s where you’re going to find your data. That’s the cohort you’re going to be able gather your research.

It isn’t like they’re excluded from research, but whether or not it’s female-focused disease related.

I guess the biggest thing when it comes to research, is there research being done – I don’t think there’s enough research being done on general thyroid disorders, endocrine disorders in general.

I know we’re not talking reproductive today, but reproductive endocrinology (reproductive health or infertility issues) that’s of course, primarily female driven. Obviously, males play a role, but not the primary role. So, in all those potential situations, there is research that needs to be done. But I would just say in short order, there always could be more research and better directed research.

Are there any changes that you’d specifically like to see in the clinical approach of thyroid health in women?

This is a topic I love, I’ve been doing it for 20 years, and I work very diligently on trying to provide medical education. But I think one of the most important aspects in improving care is when you think of where women go typically when it comes to their first symptom and their first sign that they begin to think something’s wrong.

They’re going to go to a nurse practitioner. They’re going to go to their family practice doctor. Maybe they feel like their OB-GYN is their primary care. They have a good relationship with their OB-GYN. So, when you think about those particular professions they’re more generalists like the nurse practitioner, the family practice doctor, or the general practitioner that somebody might see first.

OB-GYNs are going to be focused on the reproductive side. None of those people are necessarily well-versed in thyroid disorders, and that’s where something like World Thyroid Day, Thyroid Month, thyroid awareness is very important because I think the more you can help the physician, especially the frontline folks, to recognise what a potential thyroid patient looks like and what those signs and symptoms are pointing to, then put that puzzle together sooner, the faster they could be referred to someone who is a specialist in that area, an endocrinologist or rheumatologist or something like that. That’s one of the critical parts.

But I think on the balance of that is patient education, and I really feel like patient advocacy is a good thing to do. There’s a group that I’ve worked with in the past called Thyroid Federation International. It’s a great group. They have 36-member nation group of advocates that are all about thyroid health and awareness, and so they, they support one another.

Then here in the US, we have the Graves’ Disease and Thyroid Foundation that’s part of Thyroid Federation International. I try to work on both sides where we educate the physician, but we also educate the patient too to not explain away their own symptoms, to take it seriously when you have something that you feel is off, say something, go talk to a physician, and if you find one that doesn’t listen to you, then go find one who does.

What is QuidelOrtho doing to help bring awareness to thyroid conditions?

What QuidelOrtho really tries to focus, being on the diagnostic side, is the criticality of a good sensitive test that are useful in the diagnosis of this and other diseases, because we’re trying to get better at our research and better at our approach to providing the tools that help caregivers and patients alike. As a company we try to provide diagnostic tools from molecular to point of care diagnostics. We even offer over-the-counter diagnostics, so that we can try to get to those answers quicker and allow disease marker identification to happen faster.

The other thing we try to focus on and that’s part of my job here at QuidelOrtho, is the innovation of assays. We try to come up with unique ways to identify specific antibodies that might be causing these underlying problems associated with these symptomologies.

Part of wanting to be part of the World Thyroid Day awareness campaign, is to make sure that people understand that, behind the scenes, there are companies like ours that are doing our best to come up with improved tests, more sensitive tests, more innovative/improved detection methods, and then our job collectively as the human family, including physicians, patients, and payers, and everybody else in this big kind of collage of patient health, understand that we need to work together and we need to make sure that education is available. Because if it’s not available and people don’t understand the issue at hand and the tools to solve them, then we’re going to circle right back around and be right back in the situation we’re in currently. Where symptoms are being explained away and where caregivers and patients alike aren’t putting the puzzle together, and then it ends up being a really expensive long-term chronic disorder that causes additional issues beyond the thyroid.

So that’s where it’s really important, and that’s where QuidelOrtho as a company and myself as one of the folks that focuses on thyroid health really want to put our effort.

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