Raising Thyroid Awareness - You Are Not AloneJan 01, 2021 ● By Frisco STYLE
Family and pediatric nurse practitioner Dr. Sharolyn K. Dihigo launched the telemedicine clinic Integrated Health and Wellness to accommodate patients who felt uncomfortable visiting medical centers during the pandemic. Like Dr. Cortez, Dr. Dihigo specializes in thyroid health and hormones and has also struggled with a thyroid disorder herself. “We’re seeing more and more thyroid issues. It used to be primarily women and older women, but now we see men and women of all ages. Some of the research surrounding that suggests that the level of plastic in our environment is one of the causes,” says Dr. Dihigo. “When we test blood or do high-level nutrition testing, we find traces of plastics in blood and urine, and they show up quite frequently. I also see a lot of patients who have had Epstein-Barr virus. Epstein-Barr can live inside the thyroid and cause all sorts of issues.” Studies conducted by the CDC and other organizations have shown surprisingly high levels of phthalates in blood and urine, plasticizing compounds found in many household products such as soap, shampoo and cosmetics, as well as plastic toys. Phthalates have been shown to cause hormonal and reproductive disruptions in animals and they are scientifically classified as an endocrine disrupter. Epstein-Barr is the virus that causes mononucleosis, and it is one of the most common viruses in humans.
The thyroid is a butterfly-shaped gland located at the base of the throat, above the collarbone. It produces a hormone called T4 which is released into the bloodstream, where it is converted into an essential hormone called T3 that plays a vital role in maintaining the body’s energy levels. Thyroid hormones control your metabolism and affect nearly every part of your body, including the skin, muscles, heart and brain. In addition to determining how quickly a person burns calories, metabolism also determines how efficiently a person’s body converts food into energy and influences body temperature and heart rate. Thyroid disorders are caused by a variety of factors and usually result in the gland producing too much or too little hormones. Depending on the severity of the condition, thyroid disorders and diseases can cause symptoms that range from something harmless, like a slightly enlarged thyroid gland, to something as serious as thyroid cancer or a coma. Most thyroid conditions can eventually be managed relatively well after being accurately diagnosed and treated. Even the majority of thyroid cancers are easily cured if they are diagnosed early enough.
Hyperthyroidism describes a condition when the thyroid gland produces too much of a hormone called thyroxine. The resulting increase in metabolism causes some people to feel more energetic immediately after first developing hyperthyroidism, but eventually, the increase becomes difficult for the body to sustain and ultimately causes feelings of fatigue. Other signs of the condition include sudden, unexpected weight loss, anxiety, mood swings, difficulty sleeping and sensitivity to heat. Many people experience a rapid, uneven heart rate or heart palpitations, tremors, thinning skin or hair and swelling at the base of their neck. Most hyperthyroidism cases are caused by an immune system disorder called Graves’ disease. Hyperthyroidism can also be triggered by the development of nodules within the thyroid gland called toxic adenomas, which begin to secrete excess thyroid hormones. Sometimes an enlarged thyroid (called a goiter) contains several toxic adenomas. Temporary hyperthyroidism lasting from a few weeks to several months can be caused when the thyroid becomes inflamed and begins to leak hormones into the body, a condition called subacute thyroiditis. In a rare number of cases, hyperthyroidism can be caused by cancerous growths in the thyroid or pituitary gland disorders.
Conversely, hypothyroidism, or underactive thyroid disease, occurs when there is an underproduction of thyroid hormones, causing a decrease in energy. The most common cause of hypothyroidism is an autoimmune disorder called Hashimoto’s thyroiditis, which causes the body to attack the thyroid tissue, causing the gland to eventually stop producing hormones and die. “My Hashimoto’s patients feel terrible,” says Dr. Cortez. “They just cannot lose weight and by the time they come to see me, they are some of the healthiest people. They have already tried every diet, they eat super clean and take every vitamin you can think of that gives you energy. They have changed everything in their life to be super healthy, yet they still feel terrible.” Hypothyroidism can also result from the surgical removal of the thyroid and from overexposure to iodide, an ion found in cold and sinus medicine, some heart medications and contrast dyes given before x-rays. The reason iodine is added to salt is because iodine deficiency has been tied to thyroid disorders and most people rely on white, standard table salt to receive the recommended amount of iodine in their diets. Many of the symptoms of hypothyroidism are the opposite of those associated with hyperthyroidism, such as unexplained weight gain, difficulty losing weight, a slow heart rate and sensitivity to cold. Other symptoms include fatigue, muscle and joint pain, memory and concentration problems, hair loss and dry hair or skin. The disorder causes elevated levels of LDL, or “bad” cholesterol, increasing the risk of heart disease. As the thyroid continuously struggles to produce more hormones, it can become swollen, making it difficult to swallow and sometimes even changing the appearance of the neck.
Thyroid disorders can occur at any age, regardless of dietary and exercise habits. “Around 2010, I woke up and felt fine, there was nothing wrong with me,” says Bruce Goldberg, founder of North Dallas Texas Thyroid Group, a Facebook group for people living with thyroid disorders in the local community. “I’m just a typical guy; I watch football, I drink beer and I go to the gym. I went to work one day and by lunchtime I didn’t feel well. My ears started to ring; I started getting really bad pain in my knees, and I got really hot. I was having a really hard time thinking and remembering things so I went home early that day and I told my wife that I thought I was getting the flu. The next day I woke up feeling fine, so I went to work and the same thing — I went to lunch and 2:00 pm on the dot my ears started to ring, my back started to hurt, my knees hurt ... I felt like I was on a roller coaster.” Goldberg made an appointment with his primary care doctor but when his bloodwork showed nothing out of the ordinary, his doctor suggested that it may have been a stress-related episode. When the condition continued to get more severe, Goldberg consulted a neurologist who did a series of tests, all of which came back negative. After an endocrinologist analyzed his bloodwork and found nothing abnormal, Goldberg was no closer to discovering the cause of his sudden illness, or any way of treating it. “I lost my job; I couldn’t think straight, I was in so much pain, I was losing weight, gaining weight, had diarrhea, my hair was falling out everywhere, but every time I went to the doctor, they’d say there was nothing wrong with me,” said Goldberg. “What happened was when I went to see the endocrinologist, he only did one test. When I got the comprehensive set of thyroid tests, they showed that my thyroid was completely dead. Come to find out my body started attacking my thyroid, but the bloodwork takes five weeks to change. When they checked my bloodwork after the first week and it showed that everything was fine, I checked the thyroid off my list and kept going looking for other stuff.”
Thyroid screening tests consist of a simple blood draw to check TSH (Thyroid Stimulating Hormone) levels. A high TSH indicates low thyroid function, while a low TSH indicates an overactive thyroid. However, a person may still have a thyroid issue even if their TSH is within the normal range. To assess the overall health of the thyroid gland it is necessary to do a comprehensive set of thyroid tests, which measure TSH, free T3, free T4 and the presence of antibodies that indicate an auto-immune disorder such as Graves’ disease or Hashimoto’s thyroiditis. TSH is associated with the brain signal sent to the thyroid gland which tells the gland to produce T4 . T4 is the hormone that gets converted to T3 to supply the body with energy. For some people, the body is unable to properly convert T4 into T3, so even if their T4 level is within a normal range, the body is not able to produce enough T3. Since a person’s blood takes five weeks to show a change in these hormone and antibody levels, bloodwork that is analyzed too soon after a sudden development of a thyroid disorder will come back negative.
“I kept telling everyone I didn’t feel well and they kept saying there was nothing wrong with me,” says Goldberg. “One day I was lying down on a bench at the zoo, because that’s how tired I was, and my phone rang. It was the doctor calling to tell me that my TSH was 25. Your TSH is supposed to be around one. It was the first time that I ever heard bad news about my health that I got excited over because I knew that finally somebody heard and I knew that I could get it fixed. I thought, ‘thank God.’”
Sadly, Goldberg’s story is far from uncommon for people struggling with a thyroid condition. After having her second child, Casie Oxford started developing severe fatigue. “I was sleeping two to three hours on Saturdays and Sundays; I was falling asleep right after work and I was exhausted all the time. I couldn’t really workout without being exhausted and even after walking up a flight of stairs I was out of breath. Then I noticed there was a lump in my throat.” Oxford consulted an endocrinologist who tested her TSH levels, and since they were within the normal range, she recommended an ultrasound to examine the swollen thyroid. The ultrasound revealed three nodules that needed to be biopsied, one of which showed that there was a chance Oxford had thyroid cancer. “Unfortunately, the type of cancer was one that was kind of aggressive called Hurthle cell thyroid cancer. If you have it, it is very aggressive and they have to treat it heavily,” says Oxford. “But the only way for them to tell if I had it or not was to remove my whole thyroid. There was about a 70 percent chance that it was not cancerous and a 30 percent chance that it was, and if it was, it was pretty serious. So, I chose to go ahead and have the surgery. They told me at the time that obviously I would need to be on thyroid medication and I would take one pill a day and be fine. That’s what I was told. Of course, now I know that’s not exactly the case. Luckily the pathology showed that I did not have cancer, so that was great, but I had to lose my thyroid in the meantime.”
Oftentimes patients will seek a doctor that specializes in a specific symptom they have, such as a gastroenterologist for digestive issues they may be experiencing. After a thyroid disorder is diagnosed, it is treated with medication to correct the missing or imbalanced hormones. It can be a difficult and time-consuming process to discover the most effective type and dosage of medication because each person’s body chemistry is different and the benefits of a new thyroid medication often become apparent gradually rather than immediately. Most patients with a thyroid disorder are prescribed a medication that supplies T4 to their system, such as Synthroid. However, many patients find the T4 to be less effective than expected, particularly those patients who are unable to convert T4 properly. “There’s a whole cycle. You need to find someone to do the right [comprehensive] blood test, and then they need to be open to putting you on the right medication,” says Goldberg. “You find these people traveling around, flying to different cities because they hear this person will do it, that person won’t. With a lot of people, the typical medication doesn’t work the way it’s supposed to. Their labs look OK, but they don’t feel well, and they just keep going in a circle. They go to see these doctors and they tell them it’s not your thyroid, the labs are fine so it must be something else. People start going through these gauntlets of medical tests. They go see doctors, rheumatologists, neurologists and the whole time the problem is caused by the Synthroid not converting properly in their system.” Even a health care provider like Dr. Dihigo had an extremely difficult time finding the right doctor and medication. “I started on plain T4 hormones and I felt better, but I never felt good. It took me about three years to find someone to fix my thyroid to the point that I felt normal again. In that whole journey I gained 26 pounds that I didn’t want and it took me years to get it back off. I had to be on a combination of hormones because most people don’t convert well, but I couldn’t find a regular provider who felt comfortable prescribing the T3 hormone. I saw physicians, endocrinologists, internal medicine doctors and I couldn’t find anyone who felt comfortable prescribing a combination thyroid medicine, so it took me a long time to find someone to treat me. It’s extremely frustrating as a patient, and it’s even more frustrating when you’re a provider who knows better, yet you still can’t find anyone to prescribe you that medication, or who will test you in that [comprehensive] manner.”
After Oxford’s thyroid was removed, her surgeon prescribed a generic form of T4 , advising her that it takes time to discover the proper dosage for her body. “I struggled with that for about six months or so and I felt absolutely horrible,” says Oxford. “For me, the way my body handled it was I started having adrenal issues. So instead of being exhausted, my adrenaline was so high that I could not sleep. I couldn’t function. Basically, I was in that fight or flight mode for six straight months. I did not sleep for more than around 30 minutes at night and I was awake all the time. I started researching a bit, seeing what other people had to say and looking for other options.” Oxford convinced her doctor to switch her to a natural thyroid medication and found that her body responded much better to the new prescription. As she started to feel better, she wanted to increase her dosage, but her doctor was unwilling to do so. Oxford decided to look for other doctors, consulting several physicians and specialists before finding one she liked who was willing to prescribe the dosage she needed. “I had my thyroid surgery in 2017, so it’s been three years now,” says Oxford. “The last two years I’ve been with my new doctor, trying to get everything straightened out. The thing is, with your endocrine system, it’s all kind of intertwined, so being on a medication that wasn’t right for me messed up a lot of other stuff. My adrenal system got messed up, my reproductive system got messed up and I had iron deficiency, so that year of having the wrong medication for me really screwed up a lot of other stuff. We’ve been trying to work on all those things. It’s been a longer journey than I wanted it to be, but I will say, I don’t think my case is super long or abnormal because three years in thyroid land is not a lot. There are people out there, particularly ladies, that have been dealing with this for 25 years and still haven’t found any help. So, three years to me is no big deal. But those three years were pretty bad. I felt really awful, and as a mom, that was tough.”
When a thyroid disorder is left untreated for a long period of time, it increases the risk of several other medical complications. Over time, low thyroid hormones can damage a person’s peripheral nerves, causing pain, tingling and numbness in the limbs, a condition known as peripheral neuropathy. It can also interfere with ovulation, making it difficult to conceive. Hypothyroidism in pregnant women can interfere with the developing baby, particularly in the first trimester. During the first three months of pregnancy, the baby receives all its thyroid hormones from the mother. If the baby does not receive enough hormones, it can cause problems with mental development. The condition can also cause balance problems when left untreated, with older women facing a higher risk. Many people struggling with a thyroid disorder experience such overwhelmingly strong feelings of fatigue that they are unable to make it through the workday without taking a nap in their car.
“You’ve never experienced fatigue unless you’ve had this,” says Goldberg. “No matter how much sleep you get, you have this overwhelming fatigue. It’s like all the wind’s been sucked out of you. All you can do is lay down and hope you wake up feeling rested, but you don’t unless you get on the right medication.” A person with severe hypothyroidism can experience a myxedema coma, which is a rare condition, but can cause a dangerous drop in body temperature and be fatal. “Eventually you just slow down to live a more sedentary life,” says Dr. Cortez. “As you live a more sedentary life, you gain weight. As you gain weight, you increase your risk of diabetes and congestive heart failure, so you end up shortening your life span because of it. It’s not necessarily that your thyroid caused you to go into heart failure, but it’s that your slow thyroid slowed your metabolism, which caused you to gain weight, which then caused other medical conditions that shortened your life span.”
Goldberg had to spend an entire year consulting various doctors and undergoing a multitude of tests before his thyroid disorder was diagnosed. It took another three years to discover the correct combination of medications to manage his condition. The experience inspired him to create the North Dallas Texas Thyroid Group as a means of staying connected with people with similar experiences. “There were three or four guys that I met on the journey and we all wanted to chat and keep up with each other, so I started this thyroid group on Facebook. I guess it went into the search engine because I started having people join the group and they were all in Dallas,” says Goldberg. “It grew to 100 people, then 200 and it just kept growing and growing. Now there are around 3,000 people in it! We talk about doctors, patient experiences, medications, suggestions and basic frustrations.” North Dallas Texas Thyroid Group also maintains a list of approximately 25 preferred doctors in the Dallas area. The list is generated based solely on a running total of the number of group members who have recommended a doctor they have seen.
“When I started researching myself and found resources like Goldberg and the group in North Texas, just seeing that I wasn’t crazy and that I wasn’t alone was huge,” recalls Oxford. “Talking to people who have been through the same thing, who could point me in the right direction was huge for me because going through this alone is not fun. You start to feel crazy. I realized that I wasn’t alone and there were people out there that could help me find some help.”
For those people who have been struggling to diagnose or effectively manage a thyroid disorder over an extended period, it can feel like an uphill battle and seem hopeless at times. After living with symptoms that are only partially relieved by ineffective medication for so long, people often grow accustomed to what they consider their new normal, never realizing that there are many other treatment options to explore. “Life is so stressful and we’re all going a million miles an hour, but there’s a lot of things in bloodwork that we can correct. There are things in your life that we can optimize, like vitamin levels and thyroid function,” says Dr. Cortez. “I tell my patients once you pass 30, it’s a good idea to get your blood drawn once per year, especially your thyroid, just to see where you’re at.” Dr. Dihigo agrees, “We truly want to increase awareness and we want people to feel more comfortable coming forward and saying, ‘I think someone needs to look a little deeper at my thyroid; is this really what’s going on and could this be the root of my problem?’ I have a ton of people who come in thinking they’re depressed. They’ve diagnosed themselves and they have convinced themselves that they’re depressed. I’ll check their thyroid, vitamin D and some of the other things that make you tired and tell them their thyroid’s not working well. They just start crying in front of me because they’ve been told for years that it was all in their head. And it’s sad. We really need to increase awareness.”
Although Oxford, Goldberg and Dr. Dihigo experienced different symptoms and came from different walks of life, they each refused to settle for treatment plans that fell short of their expectations and needs. “I wish that I had done my research earlier,” says Oxford. “My suggestion would be for people to do their own research and don’t just count on the experiences of one doctor. You really need to do your own thinking and searching online. There are other options for people when this doesn’t work out so well, or the way doctors expect it to. You have to be an advocate for yourself. If you don’t feel well, that’s a valid feeling. It’s not just something that’s made up. Sometimes you have to just keep going. Don’t give up until you find somebody that will listen to you.”
Juliet Cimler is a freelance writer and project manager for a biotech consulting firm in Frisco. She has a B.S. in Business Administration and is pursuing an M.S. in Computer Information Systems.