Do you ever feel like taking medication for your thyroid is a neverending merry-go-round? Since my diagnosis of Hashimoto’s thyroiditis and hypothyroidism more than 20 years ago, there have been many times that I’ve felt I was never going to find the right thyroid hormone replacement treatment. After a number of rides, I eventually found the treatment that worked best for me. So, climb on and let’s take a ride!
In the beginning
When I was first diagnosed with hypothyroidism in 1993, my doctor, an osteopathic physician, had the standard response: She called in a prescription for levothyroxine, the synthetic thyroxine (T4) thyroid medication. In this case, she called in a prescription for Levoxyl brand. Knowing nothing about thyroid problems at the time, I filled the prescription and started taking it. Much like a headache goes away after taking an aspirin, I expected the symptoms that had brought me to the doctor — fatigue, mild depression, and weight gain — to go away quickly after starting the medication.
I couldn’t have been more wrong. Months later, even when my TSH was down below 2.0, I was still struggling with all the symptoms, plus a new one: brain fog. After complaining that I didn’t feel any better, I switched to Synthroid brand levothyroxine, but the symptoms didn’t improve. In fact, I added a new and troubling symptom: significant hair loss.
I started researching hypothyroidism and used my AOL trial disk (remember those?) to get on the internet. Even then it wasn’t hard to find other thyroid patients who were similarly frustrated by symptoms that continued despite their thyroid treatment. It was also around this time that I created my first website for thyroid patients, to share information I was learning the hard way!
You’re just stressed and depressed
I was losing so much hair at that point that my ponytail was the thickness of a pencil and my shower drain was constantly clogged. Losing my hair was making me feel anxious and depressed. Fearing that I would lose all my hair, I asked my doctor if she thought a second opinion might be useful. She agreed, and off I went to an internist who specialized in thyroid treatment.
I told the doctor that I wasn’t feeling well, and wondered if the worsening hair loss was due to my switching to Synthroid.
He looked at me and told me that thyroid disease and thyroid medication never cause hair loss. He said I was losing hair because I was stressed and depressed. He said to calm down and keep taking the Synthroid.
After crying in the car, I got mad. Yes, I was stressed and depressed, but that wasn’t causing my hair loss. The cause was my thyroid symptoms, including the hair loss!
Back to the internet I went, where I looked up the detailed pharmacological information on Synthroid brand levothyroxine. And there it was: “Synthroid may cause transient or permanent hair loss.” It wasn’t on the one-page handout from the pharmacy, but it was in the prescribing information for doctors.
I was tempted to send the information back to Dr. “Stressed-and-Depressed,” but instead decided to explore alternatives. At that point, I heard about another drug, Thyrolar (liotrix), a combination of synthetic T4 and T3, and went back to my regular doctor and asked to try it.
Seeing the light
Starting Thyrolar was like turning on a light in a dark closet. I felt clear-headed, more energetic, and within a few weeks my hair loss slowed and then stopped. It turned out that I apparently felt better taking both the T4 and T3 hormones rather than just the T4. And given the improvement in my hair, the Synthroid had definitely been a problem for me.
I stayed on Thyrolar for about two years, but there were challenges. The drug periodically was in short supply or on back-order. Eventually, the manufacturer announced production changes and took it off the market. But the temporary production stop turned into a permanent one and Thyrolar was not coming back to the market. I needed another option.
I had moved to a different doctor, this time an integrative M.D. She switched me back to Levoxyl brand levothyroxine again, and she added Cytomel, the brand name synthetic liothyronine (T3) to the mix. Essentially, she was simulating Thyrolar, but with two pills instead of the combined medication.
The T3 challenge
This worked well for a while, but we began to notice that my free T3 levels were dropping. She increased the dosage of my levothyroxine and Cytomel, and I didn’t respond well. I had heart palpitations and a fast pulse rate, which indicated that I was getting too much T3. What didn’t make sense was that my free T3 levels were even lower than before, suggesting that I was undermedicated. What was going on?
These findings led my doctor to make a big change: We decided that I would switch to Armour Thyroid, a brand of natural desiccated thyroid. This was a good decision because somehow I was able to metabolize the Armour without having symptoms of overmedication, and my levels normalized and my symptoms were reduced.
Around this time, at age 34, I was hoping to become pregnant for the first time, I visited an endocrinologist, who felt that my TSH level, which at that time was around four, was far too high for optimal fertility. She increased the dose of Levoxyl until my TSH was around 1.0, and said I was ready to try.
I was worried that Hashimoto’s, hypothyroidism, and my age were going to make it difficult, but I conceived my daughter the second month we tried. At that point, I also knew that it was crucial to confirm the pregnancy as early as possible because I was likely to need a dosage increase. I confirmed my pregnancy seven days post conception (hooray for EPT tests!) and went off to the doctor, only to learn that my TSH was five already. My dose was upped again.
I had a few minor adjustments during the first trimester, but my thyroid stabilized and saw me through until I delivered a healthy daughter!
I stayed on Armour Thyroid for about 10 years, generally stable, with decent numbers and control of symptoms, until my levels became erratic. At this point, I was a full-time thyroid patient advocate, and connecting with thousands of thyroid patients per year. Many people were complaining that they felt their Armour Thyroid had changed. I did some research and discovered that the company had reformulated Armour. The new formula wasn’t working as well for some of us. Another brand of natural thyroid, Nature-throid, was also on the market, so I switched to that drug. Things stabilized for me, and I felt well again.
When I headed into perimenopause in my mid-40s, I noticed some weight gain and increasing fatigue. By that point, my doctor and I had both become far more knowledgeable about hypothyroidism treatment. We decided to check my reverse T3, an inactive form of the T3 hormone that can become elevated and cause worsening hypothyroidism symptoms. My reverse T3 level was high, and she added a small dose of a time-released synthetic T3 to help counteract the reverse T3 levels. This resolved the symptoms.
Periodically, tests and symptoms would reveal that the reverse T3 had gone back up, and so she would increase the time-released T3 dose slightly.
Since that time, I have remained on Nature-throid brand natural desiccated thyroid, and a compounded, time-released synthetic T3. This has kept my levels optimal, and controlled my symptoms well. Periodically my doctor rechecks my dose and adjusts things up and down slightly, but my dosage is fairly consistent.
Unless something dramatically changes, or a promising new drug appears on the market, I don’t anticipate any major changes to my treatment. I’ve found the drugs, brands, and dosages that work safely and best for me. Fingers crossed that it stays this way and that you find the best option for you!
If you are still riding the thyroid merry-go-round, here are a few lessons learned I’d like to share, based on my own experience.
First: Don’t be afraid to tell your doctor that you want to feel better, resolve your symptoms, and explore your options. If you don’t speak up, your doctor may assume that there’s no reason to make a change to your treatment.
Second: Realize that it’s a trial-and-error process and that you need to try different medications at different doses until you finally discover the right combination for you. What’s right for you can also change over time.
Third: I was lucky to have open-minded doctors who worked as my partners. If you have a doctor who refuses to discuss options such as T3 or natural desiccated thyroid, get a new doctor!
Finally: Try to be patient. Don’t expect immediate results, or be tempted to impatiently switch drugs or dosages too quickly and too soon. After you’ve changed dosages or medications, you need several months to be able to fully evaluate whether you have improvements in your symptoms or need to make further changes.
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Mary Shomon is a thyroid disease, hormonal and autoimmune health writer, and patient advocate. For two decades, Mary has been a leading force advocating for more effective, patient-centered thyroid and hormonal health care. Mary is the New York Times bestselling author of “The Thyroid Diet Revolution,” “Your Healthy Pregnancy with Thyroid Disease,” “Living Well With Hypothyroidism,” and 10 other books on thyroid disease and integrative health. She co-stars in two PBS health specials, “Healthy Hormones,” and “Vibrant for Life.” Follow her on Twitter at @thyroidmary or at her Facebook communities: ThyroidSupport and ThyroidDiet.