According to the American Thyroid Association, an astounding 15 million Americans suffer from an undiagnosed thyroid condition and yet only about forty percent of patients are diagnosed. Additionally, women are five to eight times more likely than men to suffer from thyroid disease.
I interviewed Denise Roguz on the Fempower Health Podcast. She is one of the co-founders of ThyroidChange, a thyroid health information website. She and her co-founder, Michelle Santonastaso, were two struggling thyroid patched patients who met through social media channels. They started by creating a petition and trying to gather like-minded people, practitioners, other patient advocates to create something to support the lack of adequate thyroid health care.
What we Discuss
Why thyroid conditions are hard to diagnose
What tests your doctor should order - it's more than TSH
Types of thyroid conditions
What to expect once you are diagnosed
"TSH is not the only test. It's one piece of the puzzle of maybe how or why your thyroid is working, but it's not the only one. So the question is, how do I know how my doctor is interpreting the labs?" - Denise Roguz
Transcript
Georgie Kovacs: How does one diagnose a thyroid condition and why is it so hard to diagnose it?
Denise Roguz: Part of it is the symptoms overlap maybe with other conditions. Common symptoms include
Depression
Anxiety
Fatigue
Muscle pain
Cognitive issues
Brain fog
Weight gain
Thyroid hormone is needed in every cell of the body, so there are hundreds and thousands of symptoms that could happen. The symptoms can be sometimes vague for some people and they can be debilitating for others.
There is also a lot of overlap with other conditions and they might be dismissed. I often hear, "Oh, you might be tired just now or under a lot of stress. You're getting older." Maybe some practitioners aren't quite listening to the full myriad of symptoms and maybe the patient isn't expressing themselves fully, and the standard test is flawed.
A lot of doctors will only test TSH, the thyroid stimulating hormone, to measure what is happening with the pituitary gland, which is the signal between the brain and the thyroid. It's measuring that signal, rather than what is actually available to the cells and what is going on in the cells. So if they're relying only on that one, one test, that's only one piece of the thyroid puzzle, and there are other tests that doctors should be looking at.
Georgie Kovacs: I myself was a bit challenged because it is my mission to educate people about how to advocate for their health. And if we were to title this podcast, advocating for your thyroid, that assumes we're at a starting point where the patient already knows that they have a thyroid issue, but as you started out saying, the patient actually begins with symptoms. If they're not in a position of grinning and bearing it, they do visit that doctor. If they have the right information, they may advocate and ask specific questions. But in a lot of cases, people don't know this or the doctor isn't hearing them properly. How can a patient advocate for themselves so that they get the proper diagnosis as fast as possible?
Denise Roguz: Patients I've known even just suffering with depression, they're complaining of that one symptom. Depression alone should be a screening for a thyroid condition. This was the case with my sister. She was dealing with some depression and anxiety. Thankfully, her psychiatrist was savvy enough and realized it could be a possible thyroid condition. And sure enough, it was.
As far as advocating for oneself, our mission is to educate and to inform the public of what the signs of a thyroid condition could be.
If they have that background knowledge this could possibly be a thyroid condition, it should be mentioned it to their doctor. They should recognize that you don't have to have all nine symptoms. Thyroid disease can present itself with just one or two symptoms and it can vary in degrees.
I would also recommend that they ask their doctor to run a full thyroid panel, which includes:
TSH
Reverse T3
Free T3
Reverse T4
Free T4
Thyroid antibodies
Total T3 and T4
The other problem lies in the fact that practitioners may not be savvy in interpreting those labs. It's not just getting tests run, but it's also finding the right practitioner who is able to interpret those labs.
Dr. Kent Holtorf, founder of Holtorf Medical Group in California, stated that he feels that the research and the guidelines are about 17 years behind.
This was similar to my story. For about 17 years, I was struggling with a lot of troubling symptoms, fatigue, depression, anxiety, freezing cold all the time. I didn't really have weight gain though, but thyroid disease runs in my family. I tried talking to my doctors but they said, “Well, you don't have weight gain. You're not overweight.”
They didn't think I could have a thyroid condition, and they were only testing TSH. I found an integrative doctor focusing on hormone health and based on my symptoms and everything I was describing to him, including that I was always cold, he knew I had a thyroid condition.
He ran a full panel and sure enough, my Free T3 and Free T4 was rock bottom. Also, there was a conversion issue between T the T3 and reverse T3.
Georgie Kovacs: You mentioned that interpretation is another challenge. Can you provide some guidance on how we know if our clinician is properly even reading the information that's being provided by the lab?
Denise Roguz: What I aim to do with Thyroid Change is take the information that I have found from pioneers in the thyroid health industry to take their information and relay it to the public. That's my goal or thyroid gurus out there are telling us that TSH is not the only test. It's one piece of the puzzle of maybe how or why your thyroid is working, but it's not the only one.
So the question is, “How do I know if my doctor is interpreting the labs?”
One clue that your doctor may not be savvy is questioning whether the full panel needs to be run and focused solely on what the lab range says without taking into account your symptoms.
It's difficult for a patient to start questioning their doctor. You're just the patient. You might be accused of Googling too much or finding things on the internet.
The patients that we hear that are having the best results are going to integrate with doctors or functional medicine practitioners.
It's extremely difficult because we're, we are taught to rely on the doctor's knowledge. And, but sometimes their knowledge is a little shortsighted or outdated,
Georgie Kovacs: What are the main types of thyroid conditions?
Denise Roguz: The top four ones are Hashimoto's and Graves' Disease, which are, which are both autoimmune conditions that affect the thyroid gland. One creates hypothyroid symptoms, and one creates hyperthyroid symptoms. Hashimoto's creating hypo and Graves creating hyper.
There are people who feel like they swing back and forth because of this autoimmune condition. And then there's straight up hypothyroidism and hyperthyroidism. That's not related to an autoimmune. But what they're finding is that they believe they believe most of even straight up hyper or hypothyroidism, that it is related to an autoimmune condition, whether it's expressing itself in the lab results or not.
And then there's things like thyroid eye disease. You know, we have thyroid storms and things like that, but the top four, the most, most common are the ones that I just explained.
Georgie Kovacs: What should those who have been diagnosed with thyroid disease be prepared to expect?
Denise Roguz:
If they're continuing to have symptoms, I would like them to know that taking that one pill doesn't mean that that's curing all of their thyroid problems. They can be underdosed, they can be overdosed. They could not be converting the medication properly. So my advice would just be, keep searching and keep looking out there, go to the Thyroid Change website. We have a whole page on why certain medications may not be working for you. And this is why, but it really goes back to the lab interpretation. So if a good doctor is giving a patient, so for example, T4 medication, all otherwise known as Synthroid or levothyroxine, has been known as the gold standard for hypothyroid patients.
A lot of patients don't convert the T4 to T3, which is necessary. The T3 is what's needed in every cell of the body. So if you're a bad converter, all the T4 in the world, it's really not going to help you a lot if you're not converting it though. So, and there's another medication T3 liothyronine, but they've been reluctant to prescribe it because over prescribing it. It can cause heart racing. It could lead to some heart issues and it's short acting. Typically it has been short acting, you know, or only for six hours. So you have to dose it a couple of times a day. So, but if a patient is only given T4 medication, a good doctor would look at the labs and see that and see that like, okay, well, you're, we're giving you T4.
It's not converting to T3 or your T3 T3 isn't high enough. It's not getting into the cellular level. We need to start adding some T3 to this to make up for it. And that's where they're falling short. They're not looking at the labs in detail to understand what's happening in that process.
Georgie Kovacs: I recall reading in Dr. Lara Briden's book, Period Repair Manual, where she talks about thyroid and iodine. So apparently some do need iodine supplementation, but specifically the supplements themselves. She spoke so much about how to be careful with the dosing and how you need to be extremely closely monitored, but that there's also controversy over what the right dose is. What do we need to understand about iodine and thyroid disease?
Denise Roguz: We do know that iodine is needed to produce thyroid hormone. It's important for the production and for conversion as well. What is tricky is that there have been reports of patients with autoimmune thyroid conditions that have flares with iodine. So even just recently, Dr. Westin Childs, a thyroid practitioner, is still on the fence a little bit about iodine. Yes, it's important the right supplementation and having that right balance is also super important too.
Resources
Check out ThyroidChange’s printable PDF to prepare for your doctor appointment.
Learn more about thyroid disease here.
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About Fempower Health and Its Founder
Georgie is the founder and host of the Fempower Health podcast, a top 10 women’s health podcast with 5 stars on Apple. She is an advocate leveraging her 20+ years in healthcare and personal fertility journey to transform women’s healthcare, answering your health questions. She brings on top experts in women’s health with the aim of educating women about their bodies to have more empowered (and speedy) health journeys.