I started running at age 20, in 1984. I started running ultras in 1991. I was a competitive runner in my 20s and early 30s and always was in excellent health.
In my early 30s I occasionally began having trouble with low energy levels, weight gain, excessive need for sleep, poor running performances, fatigue, and unexplained changes in my moods. This would go on for a few months, then for no apparent reason, things would go back to normal. Then at some point I'd go the opposite direction. I'd run extremely well for months, lose weight, I'd feel good, I had tons of energy, could accomplish lots of tasks, but I was still fatigued and had difficulty sleeping. Things would settle down and then it seemed like everything was normal, until I cycled the other way again.
I didn't really begin to notice a pattern until these cycles started to come more frequently. It was 2001, and I'd quit my job early in the year to start my own personal training business. I was starting to build my client base, and things were going well. In late 2001 I started feeling exceptionally tired.
I remember my skin being dry and my hair falling out. I finally got to the point where I could not stay awake more than 8 total hours a day, I needed so much sleep, and I couldn't concentrate on anything. I needed naps all the time.
There was no way I could survive a full time work schedule feeling like a zombie. Since I had my own business, I could control the hours I worked. I'd have 2 or 3 morning clients , and by 11 am I was ready for my first nap. When I wasn't seeing clients, I was napping. I'd have a couple of evening clients, and I was ready for bed again.
By 2002 I was still having the fluctuations. At this point when I swung to the slow end of the spectrum, I went on antidepressants. There was nothing wrong in my life, there was nothing to be depressed about, but I felt like my brain wasn't working. I felt awful. My running, which had been a huge source of fun, activity, and social life, was deteriorating. Not only was I not enjoying it, I didn't feel like participating in races or being around runners anymore. It seemed like too much effort.
I'd been a competitive runner for years, placed well and frequently won races. But at that point I'd be running a speed workout on the track and all I wanted to do was lie down at the edge of the track and go to sleep. I was having back cramps when I ran. The muscles in my upper back and around my ribs were cramping. I felt like I was in slow motion. I hadn't gained more than about 5 pounds, but my legs felt like elephant trunks, like there was chewing gum stuck to the entire surface of my shoes and it took a superhuman effort to take every step.
I looked horrible. My entire face had taken on a dull look, what I now know as "pancake face". My hair was dry and breaking, my skin was flaking off, my nails were brittle, and I didn't have the energy to care.
My primary care physician didn't know what to do with me. She suggested the antidepressants and said, "Maybe it's normal to be tired after doing those races. You're almost 40. Maybe you're going through menopause early." One day I saw a different doctor in the same office. The problem in talking to physicians was that they always thought it was because I was running. I could almost tell you verbatim what they would say. "Of course you're tired. Stop running so much. It's normal to be tired as you get older."
Getting old? Menopausal? At 38? That didn't explain the 50, 60 and even 70 year olds who were beating me in races and seemed to have unlimited energy compared to me.
My brain felt old. I wanted to take some classes, I had considered going to back school for nursing eventually but I couldn't even read a newspaper article. I wouldn't remember what the first sentence said by the time I got to the end of a paragraph.
A friend I talked to suggested I get my thyroid checked. No one had ever suggested this, not even the doctors. I asked my doctor about it, and she agreed to it. A couple of days after my blood test, the doctors office called me. "Your TSH is a little high, we need you to come in."
I was relieved when I got the call. Maybe there was a reason I felt so bad! Maybe I was fixable!
My doctor didn't do anything except refer me to an endocrinologist. It took a while for me to get an appointment as a new patient, a couple of months. The endocrinologist looked at me skeptically. I told her I was a runner, and how I was feeling, and all the ups and downs I'd had. "Are you sure you're not just trying to lose weight?" She felt my thyroid. "You do have a goiter." She told me that my thyroid was swollen and that it would have to be watched over time.
She literally threw some samples of Levoxyl at me and told me to get another blood test and come back in 6 to 8 weeks.
In 8 weeks I was back. My TSH hadn't budged. She went up on the dosage. In another 8 weeks my TSH was in the normal range, 5.5. I was fixed, according to her. I needed nothing else. I could be managed by my physician.
Except I didn't feel any better. I went back to the primary care doctor, who sent me to a different endocrinologist. This time I waited the nearly 3 months to get an appointment. This one was not so rude, but wasn't much more helpful. He upped my dosage and my TSH started dropping, eventually he had me almost in the hyperthyroid range for the lab, but I didn't feel any better except for spending less time asleep. He ran more tests. You have Hashimoto's, he said. It's an autoimmune response of the body, it attacks it's own tissue. But it didn't make any difference in the treatment, just thyroid replacement. If my thyroid levels were normal, why did I still feel like a zombie? I wasn't sleeping as much, but I still couldn't concentrate. I felt horrible running and my brain wouldn't work.
I went online and started digging for information. It took me forever to grasp what I was reading. I had something called Hashimoto's thyroiditis. I had high levels of two types of antibodies to indicate I had Hashimoto's. The antibodies were "indeterminate" for Graves' disease. My new doctor explained that Hashimoto's can cause fluctuation in thyroid hormone production, so you get periods of hypo and hyperthyroidism, until eventually there is so much damage to the thyroid that you become hypothyroid. But there is always the possiblity of developing Graves' disease at some point, or thyroid cancer, or problems from benign nodules. This didn't sound good at all.
He had me get an ultrasound and I did have a goiter and several small nodules, but he wasn't concerned about them. He said he would have to see what they did over time. Mostly it looked like my thyroid was all bumpy and lumpy, as he described it. That was the effect of the Hashimoto's destroying my normal thyroid tissue. I wondered how long it had been going on.
I still felt horrible. I couldn't shake the brain fog. I wondered if I'd ever feel normal again. The websites I read said antidepressants could make you feel worse and that the thyroid problem is what needed to be fixed. I quit taking antidepressants. I always relied on my brain and being sharp. I felt like I had someone else's brain. No one seemed to know what to do to help me. I knew this wasn't normal but I didn't know where to go to fix it. I'd been through three doctors. Two years had passed and I was living in a haze. I started to wonder if I was crazy.
By fall of 2003 I was at the end of my rope. I had agreed to direct the Across the Years race, a huge job, but it was something I loved and was committed to, hoping I'd feel better by then. My friend Laura offered to help co-direct it. I don't know what I would have done without Laura. I was walking around in a fog, feeling like a completely dulled-out, dumbed-down version of my former self. I was unable to concentrate, make lists, or follow through on things. I was home wandering around in my bathrobe, in between personal training clients. I regularly burned things I was cooking on the stove. I couldn't multitask at all. I wanted to go back to school for nursing eventually, but I was still struggling to read and I knew I wouldn't be able to concentrate.
I continued to scour the Internet and found some good thyroid information on thyroid.about.com. There was also a chatroom and I found it very helpful. There was a list of recommended endocrinologists all over the U.S. They helped me find an endocrinologist in Phoenix who would actually listen to me.
It took me another three months to get in to see her but I waited, not sure if I should get my hopes up.
In February 2004 I had my appointment. She did a thorough exam and spent over an hour with me. She looked at my labs and ultrasound films, but didn't say a thing about the numbers. Instead of throwing some samples of medication at me, she asked me what I felt was normal for me. I told her I wanted to get my old energy back, I wanted to be able to still run ultras, and I wanted to get my brain back.
She prescribed an additional medication. She cut back on my dosage of Levoxyl, which worried me, but she added Cytomel. She explained that many people who don't respond well to levothyroxine alone (T4 hormone replacement) do well with the addition of T3, which is what Cytomel is. She explained that T3 is much more potent than T4 so it is given in small amounts, and it would be necessary to adjust the amount of T4 I was taking accordingly.
I was amazed that she wasn't focused on the lab values. She explained to me that she had thyroid cancer, had her thyroid removed, and she knew that the lab reference ranges didn't mean much for individuals. She said some people feel fine with a TSH of 10. Some people do best with a TSH of 1. Some feel fine in the hyperthyroid range. She said you can't treat the lab value, you have to treat the patient and how they feel.
Some people have chronic hypothyroid symptoms because the active thyroid hormone T3 is lacking. Their TSH gets corrected from the T4 but their Free T3 stays in the toilet. According to the lab, they are no longer hypothyroid, but they have the symptoms. Many of these people do well when T3 replacement is added. I was lucky, I did respond well to adding T3. And I still do. I do well on a very small dose. If I try to up my dose of T3, I get hyperthyroid symptoms.
The first morning I took the Cytomel, I felt like I was having a power surge. I felt my heart racing, sort of nervous, but that subsided after an hour or so. The second day I took it, I felt that way again, but it faded. After a week on the Cytomel I no longer felt the racing heart in the morning but I did notice something else. I was lucid. I could think. I had energy. I signed up for the Four Peaks Marathon a couple of weeks after starting on Cytomel and I felt like a new person.
This is not an exaggeration. It was this dramatic and this quick. By that spring I signed up for my few nursing prerequisites at the community college and by fall I had a part-time job as a CNA, was continuing to do my personal training, and had applied for nursing school. I got into nursing school in March of 2005 and graduated in August 2006.
I still struggle. I have to keep frequent checks on my thyroid. In the past, when I was stressed or working out hard and suddenly cut back on my workouts, it seemed to cause me to need less thyroid replacement. But then things evened out after a while. I think my thyroid condition might have stabilized. As I approach menopause, I've been warned that things could change again, so I'm staying on top of it. I work part-time because a full-time nursing schedule is so exhausting, doing 12 hour shifts. If I want to be able to run and have a life with normal energy, I need to cut back on something.
I do get fatigued more easily than many ultrarunners, it seems. I am not able to keep a year-round, year after year racing schedule. I need periods of time to back off and give my body a break, otherwise I can get so fatigued that I don't feel well at all, and it can go on for months. I've figured out that if I train and race hard for a year or two, it's best for me to take a year off from the intensity. I continue to run and work out, but I don't race and I don't do many long runs at all during my down year.
I have managed to continue doing ultras and over the past few years have ventured into the world of multi-day racing and longer, more challenging ultras. I've done three 48 hour races, several races longer than 100 miles, and finished the Badwater Ultramarathon twice. In 2011 I ran a double Badwater, which was 270 miles, and it took me about 5 days.
It took me a while to rebuild my fitness after the years of struggling to get my thyroid treated and then nursing school, but I'm enjoying running as much as ever, and feel like I am balancing things in my life well again.
It is possible to run and do well in ultras with thyroid disease, but it takes some extra diligence and discipline on your part. You have to be good at listening to your body, and being persistent and firm with health care providers.
Convincing physicians that they need to check my thyroid more often than once a year has been a challenge. Doctors don't always understand athletes. They think athletes are in great health because the general patient population they see is not in very good health, so we look good by comparison.
What doctors don't understand, especially if they are not athletes, is that to perform well, your body needs to be fine tuned. I won't perform well with a TSH of 3. In fact, I feel rather comatose. I do much better with a TSH of around 1. My Free T3 is usually low normal range on the labs but I feel fine like that. I don't know where I'd be if I didn't take Cytomel. It has been a miracle drug for me.
Athletes who have been competing and training for years know their bodies very well. If you doctor is not an athlete, they might not understand that. Find a doctor who will listen to you and respects your wisdom about your own body. I have been fortunate since I moved back to Colorado, my primary care provider is a physician's assistant I have known for over 15 years and she does understand and listens to me.
Now that I'm a nurse, I have empathy for my patients who struggle, especially when the physicians don't listen to them. I make it a priority to make sure the patient gets their questions answered and understands they have options. I have so much more respect for physicians who look at the big picture and know how to listen.
In health care, listening to your clients, asking what they need to make the most of their lives, and looking at their individual situations and the whole picture of their lives is what makes a great physician or health care provider. Combining medical training with listening and an open mind is an art.