I was diagnosed with Grave's Disease in 2020 and had my thyroid removed a few months later. Here is my story of diagnosis - may it validate, encourage, and help you! There's also links to videos I have made on the subject at the end of this article.
Hindsight is 20/20: The Symptoms
About a year before my thyroid was removed, I started noticing that I was consistently warm. Nicknamed the “freeze baby" in my family, I was always dressed in warmer clothes than others. However, I soon discovered that I watched what others wore and planned my outfits accordingly; I wore one layer less to stay comfortable. I didn't think of it as terribly abnormal at the time - I just shrugged it off.
I also started getting palpitations, or racing heart beats. I observed them carefully; as a nurse I knew I should identify when and why they came. I gathered that they were random, not due to stress, and I could make them go away by holding my breath (called the Valsalva Maneuver).
My heart also pounded in my chest. It was so disruptive that I couldn’t cuddle my husband, as my heartbeat would literally shake him! I had intermittent hand tremors (I assumed these were due to caffeine at the time) and I was snoring. These were due to my hyperthyroidism, though at the time I had no idea.
The First Medical Visit
I visited my doctor for a routine checkup in January of 2020. My husband came with me too, since we were also there to talk about starting a family; we had been trying for over a year without success. I mentioned the heart palpitations to my doctor.
She performed an EKG that came out relatively normal, but also recommended an ultrasound of my heart (an Echocardiogram) just to make sure everything was okay. This was normal too, so I went on with my life assuming that the palpitations were due to a genetic heart condition (my mom has palpitations too). I never associated my body temperature, snoring, tremors, or other signs with the heart symptoms.
I had been exercising my whole life, but in the last year or so I had started seriously weight training. I had been discouraged – while I was consistent with my workouts and paying closer attention to my nutrition than ever before, I wasn’t getting any stronger.
A few months passed, and I became more vocal about our attempt to become pregnant. A few colleagues recommended a thyroid blood test (they may have had past experiences or medical knowledge to suggest this, but they didn’t share). I messaged my doctor and asked about it; she ordered the lab for me, even though she said I didn't need it.
The lab draw order sat there for months as I went about my bustling life. I only remembered it when I realized I needed to get my iron levels checked too. Finally, I went to the lab and had my blood drawn.
Discovering My Goiter
As I walked into work late post blood draw, I mentioned it to my coworker.
"You had blood tests done this morning?" She asked.
"Yep, running a little late!".
"May I ask you a personal question about your labs?" She asked, gently.
"Of course!"
She wondered if I had gotten my thyroid levels checked. I told her that I did, but only for peace of mind since we were trying to get pregnant.
"It's just that, for a slender person, you seem to have a lump on your neck."
"Huh?"
I peered at my neck with the camera in my phone. She was right, I did! How could I have never seen it before?
I took pictures and a video of my neck from all angels to confirm. I then furiously texted them to my husband, best friends, and sister.. "LOOK AT THIS GOITER!" I texted. "HOW LONG HAVE I HAD THIS?!?!"
A goiter is a group of cells that look like a big lump on your neck. They are common in people who have an enlarged thyroid, as the thyroid sits on the front of the throat.
I was still waiting for the blood results, but in the meantime I read every article on thyroid disease I could find. The next 48 hours were consumed with my new obsession over this lump on my neck, which was so doubt causing all the symptoms I had explained away.
Receiving The Diagnosis
I exhausted myself with my knowledge and sat by the phone, waiting to be told my lab results. I assumed I had Hyperthyroidism (overactive thyroid). Common symptoms include racing heart, heat intolerance, irregular or light periods, weight loss, difficulty sleeping, irritable/agitated mood, tremors, fatigue or weakness, and sweating.
Hindsight is always 20/20, isn’t it? My periods were lighter than ever, a friend had noticed my hands shaking once, and the racing heart and heat intolerance were my first symptoms.
Thankfully, I wasn't having issues sleeping (just my poor husband, who listened to me snore) or feeling agitated. My weight was steady, even though I was actively trying to gain muscle. My symptoms painted a clear picture of a thyroid issue.
As I continued reading, I learned that 1 in 8 women will develop a thyroid disorder at some point in their life. This was both alarming and comforting; there must be a community of women out there with thyroid disease experience and providers who know how to treat it. I studied the treatment options so could feel prepared to ask questions when I talked with my doctor.
I tried to only read information from credited sources. I was lucky that as a nurse, I had free access to UpToDate, which contains evidence- based articles meant for medical professionals to use as they treat patients.
I started journaling my questions and thoughts, and jotted down my thyroid levels there as well. This journal would remain with me for the next 6 months and fill with questions and reminders related to my thyroid disease.
My primary care doctor called me and confirmed: I had Hyperthyroidism. She talked with me about my treatment options but recommended that I see an Endocrinologist and have him or her follow me closely. I found one, and he helped me understand the typical treatment and plan of care for patients with Hyperthyroidism.
In the United States, we typically remove the thyroid after taking medications to kill it. Since the thyroid makes hormones that your body needs, you then have to take those hormones in a pill form for the rest of your life.
We learned that the drugs that kill your thyroid are teratogenic (toxic for a growing fetus), so we would have to put attempting pregnancy on hold.
This news was hard to digest. COVID had just shut down the world a few weeks prior, so our appointment was a telephone visit. This allowed my husband listed on speakerphone the whole time. The Endocrinologist was patient, kind, and put me at ease. We were told to think about the options for thyroid treatment, and he would make an appointment for a follow up phone call in a few days.
Reality sank in that we wouldn't be able to start a family as soon as we wanted to, and in the same breath we were relieved that we may have a reason that becoming pregnant had evaded us for the last 18 months. We discovered that the thyroid has a large effect on ovulation and this was likely why we hadn't become pregnant yet.
I asked my doctor why I had thyroid disease - what made my thyroid become so big? Do we really have to kill it and remove it completely? Couldn't we just shrink it back to normal?
He explained that it was too early to tell why my thyroid became enlarged, but we would get more tests to find out (more lab work, and an ultrasound). I learned eventually that if we only removed part of my thyroid it would just continue to grow, so it made the most sense to remove it fully.
My doctor also explained that we remove the thyroid because it is much safer to be HYPOthyroid than HYPER (I would be HYPO the rest of my life after they removed the thyroid).
"Um, doesn't that seem somewhat backwards?" I asked.
He explained that a rare but very serious problem can occur from hyperthyroidism. Thyroid Storm is a dangerous condition where your body temperature, heart rate, and blood pressure all sky rocket extremely high. If not treated right away, it can be deadly.
The syndrome was familiar – I had learned about Thyroid Storm during undergraduate nursing school classes. As I learned more about my condition, I often felt both sorry for myself and also grateful it was nothing worse.
In the moment, I was distraught by the fact that I would have to take a pill every day. I always thought I was “healthy” and this meant that I would escape the need to take medication; I was vegetarian, I exercised for pure enjoyment (which meant I did it often), and I went to yoga every Saturday. It was wild to me that I was now being diagnosed with a thyroid condition and would likely need surgery and medication. I took such care of my body, and yet suddenly I felt so powerless in caring for it.
I was also saddened to know we would have to wait to try to get pregnant until after this problem was behind us.
More Lab Draws and Tests
The next week was full of lab results and testing. We checked my TSH once more, T3, T4 (more thyroid levels), then we tested for antibodies (to know find out it the condition was caused by an autoimmune disease). We also completed labs for my liver and bone marrow (to establish a baseline in case the medications caused serious side effects).
I had an ultrasound done on my thyroid to check for nodules, or lumps, to make sure it wasn't cancer (it wasn't). The antibody test came back positive for Grave's Disease - an autoimmune disease in which your cells attack your own organ. I felt... irritated. Really, body? After all I do for you… you are going to attack yourself?!
Since this all happened during the beginning of the COVID-19 pandemic, labs and radiology sites were still welcoming patients but doctor's appointments had moved to phone calls. Appointments that would have taken three months or more were achieved in two weeks. My Endocrine appointment, which I scheduled as soon as I could, was five weeks away. However, once moved to a phone call, I got the appointment two days after I made it! Big cheers for telehealth.
Alternative Medicine Options
Even though I trusted my doctor, I wanted to find out if there were any other treatment courses that would allow me to keep my thyroid and not be on medications for life. I talked to a chiropractor and a Functional Medicine Nurse Practitioner (NP), and ultimately made an appointment with Functional Medicine. To my surprise, they were also available for a phone visit the next day.
I told my NP my predicament. She recommended more lab draws (such as Iron, B12, Vitamin D, and more) as well as trying an Elimination Diet. This entails 3 weeks of removing gluten, dairy, eggs, sugar and soy from the diet. Then, slowly, food groups are added back with close monitoring to see if they produce symptoms (headaches, fatigue, digestive issues, etc.). She explained that most of us walk around every feeling kind of crummy, but we don’t take the time to discover what is bothering us.
The theory behind the elimination diet is that certain foods can be inflammatory to your body, increasing the chances of an autoimmune disease. Find what irks the body and eliminate it, and you might see a decrease in the body attacking itself. I found it fascinating and was willing to give it a try.
The NP asked me for 18- 24 months to improve my symptoms well enough to get off the medication and try to have kids again. I originally agreed. It would be worth it to keep my thyroid and stay off meds for life, right? And even if it didn't work, I could just remove my thyroid and move on with my life. I figured the whole process of getting the thyroid out would just take a few months or so. I thought I had found my answer.
Deciding on Treatment Options
I read more articles on UpToDate, which I thought would validate my decision. Instead, I found myself wondering if I had made the right decision.
Only 40% of people who get off the medication which shrinks the thyroid stay off it. Most people end up getting their thyroid removed anyways, or going back on the same medication.
Some people shrink their thyroid so much that they have to take hormones for the rest of their life anyways. If were a few years away from being ready for children, I might follow the holistic path. However, we were ready now. I felt my biologic clock ticking at 30. I needed to act more urgently.
My follow up appointment with Endocrine confirmed the information I had read. "This is your and your husband's decision, not mine. Take as much time as you need to decide. I do want you to know that if you decide to try keep your thyroid and eventually go off the medicine, most people end up needing treatment eventually. Only 40% of people are cured forever", he said.
I was comforted that he also knew the most recent statistics – we were both getting our information from the same place.
He went on. "If you decide to get your thyroid removed, it is still going to take about a year to get your body to the point where you can become pregnant. You have 3 - 4 months of medications to make the thyroid smaller, then surgery to remove the thyroid, then another 4 - 6 months of getting your hormone levels back where they need to be to get pregnant."
This was new information. My husband and I exchanged knowing looks, and I told him I just need to think a little bit longer about it.
I cried on and off that whole day, thinking about what would happen if I tried to keep my thyroid and it didn't work. In two years, would I look back and regret not moving forward with the surgery right away? I also felt silly and somewhat senseless for my big emotions.
Many people had much more serious things to worry about, and here I was, sad to lose an organ, take pills for life and put off pregnancy a bit longer. My sadness was reasonable, but I knew it could be worse.
The Decision
After a bit more deliberation, I decided to move forward with the surgical option – I would take medication to make my thyroid smaller (so that surgery was safer), then have it removed.
The thought of surgery was scary. The thyroid lays very close to the parathyroid and the vocal chords. One false move and I could lose my voice or have calcium problems for life. The odds were small that those things would happen, but, still, I had consider it a possibility.
I took Tapazole (Thiamazole, an anti-thyroid medication) for about two months and felt amazing on it. My symptoms dissipated, I almost immediately became stronger, and I put on about 10 pounds of muscle in just two months (incredible!). I went back on birth control, and we planned surgery for June 2020.
All in all, it was a relatively short time period to discover my thyroid disease and treat it. From discovery to surgery was only about six months. I know I am lucky!
I’m writing this now three and a half years post surgery. I have two little babies after two healthy pregnancies. I take levothyroxine every day (Synthroid), which was safe during pregnancy and breastfeeding. I no longer have palpitations, hand tremors, snore, or have problems controlling my body temperature. I feel great!
If you would like to learn about my surgery experience or hear more updates post surgery, you can check out my YouTube videos, which I made for other people going through similar experiences.
I hope my story provides you with peace of mind, encouragement, validation, and knowledge!
Helpful videos:
Getting Diagnosed with Thyroid Disease (a summary of this article): https://www.youtube.com/watch?v=lGV3mb0WdP4
Full Recover After Thyroid Surgery Including Videos from Post Op Days 2, 4, 6, and 14: https://www.youtube.com/watch?v=G0owQb6GprI
Getting my thyroid removed in the hospital: https://www.youtube.com/watch?v=kp7MEGrU17A&t=0s
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