Hormones Matter TM

We Need Thyroid Change: A Patient’s Story

September 4, 2012  |  Hormone Stories

Amy Graeber

Looking back, I really think I’ve had a thyroid problem my entire life. When I was a kid I was always tired, was often constipated, and my weight would fluctuate quite a bit. I also got migraines, my first in the 5thgrade. I was a depressed young teen, and when I was sixteen-years-old, things really started to go wacky. A couple months after a cyst removal surgery, I dropped a bunch of weight and started having random panic attacks, but didn’t know what they were at the time. One night, I honestly thought I was having a heart attack. Then the weight went back on (and then some), I was tired all the time and losing a lot of hair. Through all this, my doctor was sending me to specialists and running all sorts of tests. But everything always came back “normal” in the end. I was, however, told I had “borderline hypothyroidism” but that I didn’t need any medication. I was told if I wanted to lose weight I should see a dietician.

Feeling like I was crazy, I pushed on, telling myself that nothing was wrong with me because the tests all said I was normal. I dealt with similar symptoms on a fairly consistent cycle through my late teens and early twenties. When I was nineteen, I started feeling like I was choking if anything was near my throat. Turtlenecks, necklaces, even if someone’s hand was on my shoulder near the front of my neck. The migraines got much worse and were happening more often. I moved and saw new doctors, and was sure to have records transferred and tell them of my “borderline” thyroid problems. They checked, and said everything was normal.

I got married and a few years later we were pregnant. Pregnancy went well, until my baby made his entrance seven weeks early. I had planned to breastfeed him, and especially with him being so early, the doctors encouraged that. Unfortunately, I wasn’t building up enough of a supply. I was told by the lactation consultant that a thyroid problem could cause lack of milk production. I told her of my history and we agreed I needed to get mine checked…again. And (of course) it came back normal.  I had trouble adjusting to my new life as a stay-at-home mom with a sick baby. When he was about seven-months-old, I crashed. I was struggling to lose my baby weight, was extremely tired all of the time and was getting depressed. Back to the doctor I went.

I was diagnosed with postpartum depression (PPD) and put on an anti-depressant. I was told a thyroid problem could mimic PPD and was tested again. Normal. But six months later, full labs were run again, and this time they showed a problem. I was put on thyroid medication and sent on my way. But I continued to have problems. Later that year, I cycled again. I lost weight, was having anxiety and insomnia, and had a panic attack. Then I gained the weight back, was sleeping all of the time and became depressed. A light bulb went off in my head, and I realized there was a pattern to this, so I started educating myself on thyroid disease. I learned about Hashimoto’s Disease and it just fit too well. It would explain all my cycling over the years. I asked to be tested and my doctor refused, telling me I was just depressed and needed more anti-depressants and therapy. So I found another doctor who agreed to run the thyroid antibody tests, and as it turns out, I had it. I’m still amazed that none of the doctors over the years picked up on it, considering my classic presentation. It was all there in my records and complaints. Yet, I essentially had to diagnose myself.

By the time I was finally diagnosed with Hashimoto’s it was too late. I had developed a number of strange, seemingly unrelated symptoms; twitches, tremors, extreme vertigo, unsteadiness, vision problems, memory and speech problems, while still suffering with more thyroid-like symptoms. I was told I might have MS. I was told even though I had Hashimoto’s that my symptoms couldn’t possibly be related because most weren’t thyroid symptoms and my levels were normal. After more tests and specialists, we discovered some abnormalities in my neck. I had thyroid nodules and abnormal lymph nodes. After two biopsies, it was confirmed that I had thyroid cancer.

The cancer had spread throughout the right side of my neck. After a long surgery and radioactive iodine treatment, the cancer was gone and the majority of my symptoms went with it. But I’m still struggling to find my “new normal” in life without a thyroid. I can’t help but feel this could’ve been prevented. I’m proof that ThyroidChange is needed. I’m proof that labs can come back “normal” when things are anything but. I’m proof that doctors often don’t listen, and because of that, patients are left to suffer. More education and research is needed. More doctors need to learn about how the thyroid can affect the body, and to open their eyes to the obvious (and sometimes not so obvious) symptoms. More doctors need to treat their patients, and not treat the lab results.

In my twenty-nine years of life, I’ve been through a lot, and my experiences have made me very passionate. I want to help others to get diagnosed and feel well. I don’t want anyone else to suffer in the ways I’ve had to. I’m now advocating for thyroid patients online, and want to take that one step further and get into the medical field. I’m currently looking into medical assistant schools in the hopes of working with thyroid patients to educate and help them through their journey.

We need to band together and stand up for our health. We NEED ThyroidChange.

About the author: Amy Graeber (US) is a Hashimoto’s Patient, Thyroid Cancer Survivor, and Thyroid Patient Advocate

This article was originally posted on ThyroidChange and re-posted with permission.