Thyroid disease is an illness that, according to American Thyroid Association, effects an estimated 20 million Americans, with up to 60% of those being unaware of their condition. Also, women are five to eight times more likely than men to have thyroid problems, with one in eight developoing a problem in her lifetime.
A doctor I am not. But having dealt with hypothyroidism and related issues for almost ten years, I am well educated on the sign and symptoms, different types of tests and medications, the conflicts within the medical community over this complicated illness as well some of the reliable resources that are out there for people like myself.
In 2006, a lump appeared in my neck. It was rather large and easily viewable from any perspective. I suppose I was concerned, but not one to visit doctors, I ignored it. About three months past, and I came down with a terrible illness and took myself to urgent care. The doctors prognosis was that he was seriously unconcerned with what appeared to be a passing stomach flu but deeply worried about the bulge in my neck. He rererred me to an endocrinologist. That doctor informed me that I had a large tumor on my thyroid gland, and he referred me to another endocrinolist at City of Hope, one of the country’s leading cancer hospitals. The tumor turned out to be the size of a golf ball, and I had it, along with half my thyroid gland removed (a thyroidectomy). Thankfully, the tumor was benign, and my doctor felt there was a good chance that the half of my gland that was left would make enough thyroid hormone for my whole body. I left my final check up with instructions to have my thyroid tested every three months.
I totally forgot to do that. And two years later, I was training for a professional fitness competition and noticed that my body wasn’t responding the way it had in the past. My trainer, at the time, pointed out that I had been complaining about being tired, and suggested I get my thyroid checked. It was a big “duh” moment in my life.
And that is when my hypothyroidism journey began. I saw a doctor who tested for my TSH (thyroid stimulating hormone) and reported to me that I was “normal” as my result was 3.7 out the range of 3.0-4.8. But I knew that I didn’t feel right. I know my body. I’ve been an athlete my entire life. I wasn’t imagining things.
I felt that when I combined my own feelings about my body with the fact that I was missing half my thyroid gland, clearly something was off.
I began my own research.
The symptoms of hypothyroidism are many and diverse. The most common symtoms are fatique, trouble losing weight or unexplained weight gain, depression, constipation, dry skin and thinning hair. Other symtoms include irregular or heavier than normal menstrual periods, impaired memory, puffy face, slowed heart rate, hoarseness, muscle soreness and weakness, increased sensitivity to cold and a scalloped tongue. Interestingly, I have a scalloped tongue. The first person to notice? My then boyfriend (now husband). Not the six doctors I had seen.
If you’re experiencing any of these symtoms or a combination of, you could be hypothyroid. And when you decide to see a doctor and have blood tests run, it’s important that you know what tests should be administered.
The first doctor I saw, as I mentioned, solely tested for TSH. When I started doing my research, I found a couple of big problems with that. Firstly, there is a fair amount of conflict in the medical community about whether that test should even be used to correctly diagnose or treat hypothyroidism. There are a couple of problems with the TSH as the test for hypothyroidism. One is that the ranges are too broad, which even the most conventionally conservative doctors have begun to admit don’t work.
The lab ranges will typically be between .5-5.5, but in 2003, the American Association of Clinical Endocrinologists recommended that the values be narrowed to .3-3.0.
Secondly, it’s a test that should be taken at the very least in combination with other tests to get the whole picture. And one that result cannot be strictly adhered to without consideration of the patients’ symptoms. According to the National Academy of Hypothyroism:
Due to the differences in the pituitary’s response to physiological stress, depression, dieting, aging and inflammation as discussed, most individuals with diminished tissue levels of thyroid will have a normal TSH (1-63). Doctors are taught that if active thyroid (T3) levels drop, the TSH will increase. Thus, endocrinologists and other doctors tell patients that an elevated TSH is the most useful marker for diminished T3 levels and that a normal TSH indicates that their thyroid status is “fine”. The TSH is, however, merely a marker of pituitary levels of T3 and not of T3 levels in any other part of the body. Only under ideal conditions of total health do pituitary T3 levels correlate with T3 levels in the rest of the body, making the TSH a poor indicator of the body’s overall thyroid status.
The correct tests, I discovered, that give you and your doctor a complete and accurate picture, are the Free T3 and Free T4. These tests simply put, measure the amount of thyroid hormones circulating in your body. From Mary Shomon, thyroid disease expert, “Free T3 measures the free, unbound and available levels of the hormone. Because the free levels of T3 represent immediately available hormone, free T3 is thought by some practitioners to better reflect the patient’s hormonal status than total T3.” And, “Thyroxine, also known as T4, is one of the key thyroid hormones. The majority of hormone produced by the thyroid gland is thyroxine. Thyroxine is considered a “storage” hormone – in that alone it is not usable by the body to produce energy and deliver oxygen to cells. It must lose an atom of iodine, a process called monodeiodination (or T4 to T3 conversion), and become triiodothyronine (T3) in order to be used by cells. Total thyroxine measures the total amount. Free thyroxine measures the amount of thyroxine that is not bound, and is actually available to be converted into T3.”
Once I read this information, I was convinced that I needed further testing. It was three doctors later before I actually got diagnosed hypothyroid, due to insisting that my Free T3 and Free T4 levels be checked and began prescription supplementation, which little did I know, was only the beginning.
My doctor put me on a mild dosage of Synthroid, the main pharmaceutical that’s prescribed for patients with an underactive thyroid. But after a few weeks, I still didn’t feel well. My weight still had not budged, even though I was working out vigorously and calculating every calorie. And more importantly, I wanted to sleep all the time. I was sleeping ten to eleven hours a night and still taking two hour naps during the day, when I couldn’t hold my eyes open any longer.
I discovered that my situation was not only not uncommon, it was the norm. Many people were writing and blogging about the doctors telling them they were “fine,” yet they weren’t feeling so. I was medicated, but my levels were still at the very bottom of the ranges.
After many hours of studying, I felt satisfied that I had figured out the answer. “All I need is more medication to get my thyroid hormone levels up,” I thought. It made perfect sense. Why would you want any portion of your body, especially the one that regulates so many bodily functions, like metabolism, working at just acceptable capacity? Upon this great discovery, I returned to my doctor, and he told me I was imagining my symptoms. Then I switched to another doctor, and he told me I was training too hard. Then I switched to another doctor, and he told me that I was getting older and even though my symtoms fit hypothyroidism PERFECTLY, told me that I was going through some hormonal changes. At some point during this circus, out of total frustration, I began to self medicate with my own T3 supplementation, Cytomel. I went to another doctor yet again, and when my lab came back with my T3 above range, instead of adjusting my medication and working with me to find the proper dosage, he insisted I stop taking thyroid medication all together. At this point, I was without half my thyroid gland and had been diagnosed and medicated for two years and this genius decided I should go off all medication. Idiot.
Then one day, I came across the Facebook group Stop the Thyroid Madness. It was in this group that I was turned onto a doctor in my area who treated patients based on their symtoms and subscribed to the logical notion that patients symtoms may be alleviated by getting their hormone levels to the upper limits of the range. I’ve been working with Dr. Luber in San Diego for almost two years now and feel the best I’ve ever felt. I sleep about nine hours a night and don’t need naps during the day. At one time, I was desperately struggling with my memory, and it has almost completely returned. I drive two hours to see her, and I can assure you that it is totally worth it.
If you are experiencing any of the symptoms I mentioned, you may be hypothyroid and should get yourself tested. When you get yourself tested, you should start by asking for a TSH, Free T4 and Free T3.
If your doctor tells you that they only test for TSH or argue with you at all about the doing the tests that you are requesting (which you’re paying for), you should leave and seek another doctor. If your doctor dismisses your symtoms and tries to put you on anti-depressants, you should leave and seek another doctor. If you’re doctor gets your results and refuses to look at any number than the TSH, you should leave and seek another doctor. If your doctor refuses to talk about any treatments other than synthroid, like combination therapy which includes T3 supplementiation such as Cytomel or natural dessicated thyroid replacement such as Naturethroid, you should leave and seek another doctor.
Thyroid issues are complicated and even once diagnosed, can take a long time to treat effectively. Even now, I am on the appropriate dose of medication but must get blood work done regularly, take certain vitamins, avoid particular foods and be always cognizant of various factors effecting my body. And while you or I may not have been to medical school, we are still smart people who are just as capable of doing research and reading articles from reputable medical professionals. You must take your life and your body into your own hands.
Be relentless in finding a practioner who will listen to you and treat you properly, and I promise you will get your quality of life back!
Here are my favorite resources:
Stop the Thyroid Madness- a members only group on facebook