Lessons I Learned When My Thyroid Stopped Working


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It started out as a cold. I tried to tough it out, to rest and just get over it, but that never happened — the cold moved into my lungs and turned into a bronchial infection, and that infection attacked my thyroid. At first I thought I had a sore throat, but I realized something was horribly wrong. My thyroid swelled up, and became so sensitive I could barely touch it. I was diagnosed eventually with subacute thyroiditis.

What even is the thyroid? Though the gland is responsible for releasing hormones into the body, making its health essential to a well-functioning body and endocrine system, most people don't know about it until they need to. Even when people have thyroid issues — women being the most affected — it's often hard to know, because the signs and symptoms can be subtle, vary widely, and be seemingly unrelated.

Subacute thyroiditis, my diagnosis, is a rare inflammatory disease. It's generally thought that a virus triggers the thyroid into first jumping to a hyperthyroid state (in which the thyroid, and release of hormones, becomes overactive) and transitions to a hypothyroid state (in which the thyroid slows down). But everyone is different. For me, I never had the hyperthyroid phase, but went straight into a hypo state — which is rare, and apparently one reason doctors had trouble with my diagnosis. Ninety percent of the population recovers from subacute thyroiditis with no complications; the other 10% develop long-term hypothyroidism. I was one. Lucky me.

Related: 15 Weird Ways Your Body Is Telling You to Go to the Doctor

Was it my age? My immune system? Genetics? My grandmother had a thyroid problem — perhaps I inherited it? Whatever the underlying reason, thus began a five-year back and forth with my primary care physician and specialists who either thought I was imagining my hypothyroidism or simply wanted to start me on a high dose of levothyroxine, a synthetic hormone. During this time I was sleeping almost 12 hours a day, gaining weight, and unable to function. I couldn't do basic tasks such as lifting a grocery bag or bend down to feed my cat. Everything made me incredibly tired. I couldn't even twist open the lid on a jar. Just thinking about doing things made me exhausted. I was beyond tired, beyond debilitated, and also feeling incredibly depressed. What was worse — some of my best friends couldn't understand my "illness." In their eyes, I didn't "look" sick, therefore I couldn't really be sick.

Here's how I fought my thyroid problem, and 10 lessons I learned along the way.

Lesson 1: Don't Skimp on Testing

Lesson 1: Don't Skimp on TestingPhoto credit: Hailshadow/istockphoto
Even my doctor wasn't completely convinced that the hypothyroid state was not tapering off. I finally convinced her to authorize an ultrasound. It revealed multiple nodules covering a lumpy, bumpy thyroid.

The most important thing I learned during this time is to trust how you are feeling. No one knows your body better than you. Push for testing if you are not feeling well. I wasn't surprised that there was something wrong, but I was surprised my doctor didn't seem to hear what I'd been saying all along.

Lesson 2: You May Need to Switch Doctors

Upon the recommendation of a friend, I waited months to see a "highly recommended endocrinologist." The visit was all of 15 minutes long and the endocrinologist started me on levothyroxine. It was like taking speed. I was racing around in a hyped-up state — because it was the wrong dose (or wrong medication) — yet could barely walk because my feet had swelled up so much. Blood vessels were popping where my ankles used to be; now they were just blobby lumps of purple-splotched flesh. I couldn't bend at my knees because I had so much water retention in my legs. The only drug I was taking was the levothyroxine, and I had no symptoms until I started taking it, yet when I complained, the doctor told me my symptoms were unrelated to the medication. I couldn't believe what I was hearing from this "expert."

Lesson 2: You May Need to Switch DoctorsPhoto credit: FatCamera/istockphoto

I was furious. Let me tell you, if you ever have a doctor that doesn't listen to you and isn't supportive — get a different doctor. That's exactly what I did. Against that expert's recommendation, I stopped taking the levothyroxine and my swelling started to abate. But even though my symptoms were dissipating, the feeling of being unwell lingered.

Another issue arose much later, when I had some experience with medications and knew where I needed to be to keep my thyroid regulated. My regular doctor didn't, and ignored my observations. When I started seeing my naturopath she recognized immediately the need to up my dosage. I can't tell you how great that made me feel, to finally be in sync with a medical practitioner.

Lesson 3: Understand Your Health Issue

I made thyroid and thyroid related issues my essential reading list. I devoured every article and medical abstract. I went to the UCLA medical library. I looked at tests and lab results and became an expert. This helped me understand what I was up against. There are many types of thyroid issues: hyper and hypo, Hashimoto's (which is an autoimmune disease), Graves' disease (another autoimmune thyroid disease that causes hyperthyroidism). It was overwhelming, so I focused on subacute thyroiditis because it's what I was experiencing and what caused my hypothyroidism.

Lesson 4: Research All Possible Treatments

I couldn't sit back and let this disease kill me. I had to take action. I'd researched everything under the sun and came across ashwagandha, an ancient Indian medicinal herb that literally means, "smell of the horse." (Great. It wasn't bad enough that I felt horrible, now I would smell horrible too). It is considered an "adaptogen," meaning it can help the body manage stress. Some studies link it to reducing blood sugar and cortisol levels. Another linked it to improving serum levels for overall thyroid function. I started taking it, and initially I thought it was working; in retrospect, what was really happening was the result of adjusting the dose of levothyroxine I had been taking. That lasted for about three months, then I started feeling crappy again. The reality check here is that there are no herbs or vitamins that can make your thyroid churn out the necessary hormone you need for your body. It's impossible. I needed to be on some sort of thyroid stimulating hormone, and there had to be something out there my body wouldn't reject.

Most traditional doctors frown upon natural hormonal supplements, saying their dosages cannot be adequately controlled, which means they are hard to get. But let me let you in on a little secret: A porcine thyroid supplement was what our grandmothers took when their own thyroids went haywire, and it worked for them and millions of other people with thyroid disease for many, many years. Sometimes, the only way to get this supplement is through a naturopathic doctor — a doctor who can write medical prescriptions as well as being a practitioner of herbs and vitamins. Once I was able to get on a natural thyroid supplement, the swelling subsided and I started to feel much better.

Lesson 5: Figure Out Your Medication Sweet Spot

Doctors measure thyroid stability with a range of numbers. The normal range for thyroid stimulating hormone ("TSH" production) falls between 0.4 to 5.0. If you are over 5.0, you are said to have an underactive thyroid, or hypothyroidism. If you are below 0.4 it means your thyroid is overactive, or hyperthyroid. The catch to this scale, and what I didn't know at first, is that everyone has a different sweet spot: The number that works for me may not work for you, or for anyone else. Yet so long as your bloodwork falls somewhere within that chart, your doctor may not want to up a prescription dosage even if you don't feel right. That was the beginning of my problems.

I cannot function normally if my TSH is above a 3.0; my sweet spot is between 1.5 and 2.7. But as the body begins to acclimate to a thyroid drug, you have to increase the dosage. At some point in my treatment, my primary care physician ran a blood test and saw that I was at 4.9 and wouldn't increase my dosage. Whenever this would happen, my body would tailspin back to a horrible state of lethargy.

Lesson 6: Take Your Vitamins
Lesson 6: Take Your VitaminsPhoto credit: FotoDuets/istockphoto

In my reading of medical abstracts I saw the link between zinc and selenium and how these minerals work wonders in helping the thyroid do its job. I already knew from testing that I was deficient in selenium and Vitamin D, and there is a direct correlation to vitamin D deficiency and autoimmune thyroid disease. And while these vitamins can't make the thyroid produce the essential hormone, it will keep the thyroid running properly so it can produce it. Zinc and selenium can be counterproductive when taken together, so I take selenium in the morning and zinc right before going to bed. I began taking supplements daily and, over time, was able to alleviate my Vitamin D deficiency. (And I found that Trader Joe's inexpensive house brand Vitamin D was actually one of the best.)

Lesson 7: Drink Green Tea

Another thing that works for me: green tea, a natural antioxidant that helps with inflammation. It contains bioactive compounds that improve health. The National Cancer Institute recognizes that polyphenols in tea have shown to decrease tumor growth, and a study suggests green tea reduces mortality rates from cardiovascular disease. I started drinking green tea morning, noon, and night.

Lesson 8: Don't Listen to Your Friends

Your friends will want to help you and mean well, but I'd probably be in the hospital right now if I'd listened to all their advice over the past five years. Some will tell you that you don't need western medicine, that only a pure diet will work, others may suggest eating more seaweed (a big no-no for those with Hashimoto's) or that you should just add iodine to your meals. Getting your thyroid to work properly is something only you and your doctors can determine.

Lesson 9: Get Enough Sleep

Lesson 9: Get Enough SleepPhoto credit: andresr/istockphoto

It's essential if you have nonproductive thyroid that you get enough rest. Believe it or not, going to bed before midnight is essential to the repair of brain and body cells. The lore that "one hour of sleep before midnight is more effective than two hours after" has its basis in how much deep-slumber and REM cycles you can fit into a night, and whether your schedule reduces what's known as restorative sleep.

Lesson 10: Go Easy on the Exercise

Before I was diagnosed, I worked out until it burned. Intense training and quick weight loss can actually fishtail you right into thyroid problems. If you are feeling more tired than usual after working out, you may be pushing yourself too hard. Similarly, those of you with hypothyroidism may need to dial it down on the workouts. Light walking. Lighter weights. Go at your own pace. Working out is great, but high-intensity workouts can be counterproductive to getting the thyroid back on track.

The Really Good News

After six months of my vitamin supplement program, my natural thyroid hormone in the correct dosage, my diet for chronic inflammation and easy exercise, I'm happy to report that my second thyroid ultrasound was perfect — no nodules, no lumps. The ultrasound technician said to my doctor that she didn't think it was the same thyroid.

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