My Journey with Grave's Disease

Flipping through any women's or fashion magazine, a reader is sure to notice that all of the models used to hawk goods from perfume to lingerie to cooking gear are thin. Not just "in shape" or "athletic" - but actually thin. But in a country where "overweight" is now "average", the thin body type has become the target of criticism, derision and jokes about anorexia and bulimia. While many are quick to blame their weight - their excess weight, that is - on medical issues, few realize that many individuals struggle with just the opposite problem. In my personal experience, because I was a very thin child and remain a very thin adult, the assumption is made that I either starve myself on a regular basis or work out like crazy. The reality - neither is true! I'll admit it - I do miss the occasional meal due to a busy work load and my husband and I work out as regularly as our schedules permit. But the real reason for my size - a time when thin isn't in - is a disorder that plagues many thousands of individuals around the world, often undetected.

In 2001, I was diagnosed with Graves' disease, which is a form of hyperthyroidism. When I was diagnosed, I'm not sure what worried me more - a disease with the term "Grave" in it, or learning how to spell "hyperthyroidism" - a term I'd previously never known. The diagnosis was a long time coming - I'd suffered the symptoms of hyperthyroidism for, literally, years before the pieces were finally connected and the right blood tests run. Along the way, I periodically worried that the symptoms were all in my head - after all, I was the child whose mother ran to the doctor at the first sniffle - and couldn't that have followed me into adulthood? I worried about my eating habits - when I'd miss a lunch, I thought that maybe I was tending towards anorexia. I listened to the concerns of teachers, coworkers, friends and family who commented on my size and advised me to gain weight. And in the mean time, I ignored many of the symptoms that make up the illness that is Graves' disease.

In my last year of college, after repeated trips to the hospital for a variety of symptoms, my family doctor finally ordered a very thorough round of blood tests, designed to either diagnose or knock out a variety of possible disorders. I can remember sitting in the waiting room, nervously folding and unfolding my hands, wondering how long it would be before the tech took me back. Afterwards, I can remember sitting in class, or in my apartment, or in my car, wondering how long it would take for my blood to be analyzed. I rationalized that it couldn't possibly be anything that bad and it was probably just some tiny issue that could be easily solved before life went along its merry way. The actual result lay about halfway in between - while Graves ' disease was certainly not a death sentence, it does require care and attention - as well as a doctor knowledgeable in its course and treatment.

One of the most important things I learned about Graves' disease is that I could fluctuate between periods of remission and relapse - medication 100% of the time might not be necessary. In fact, when I was first treated, my initial round of medication lasted only four months. After that, blood tests revealed that I had reached a level of stability, and that while further monitoring would be necessary, medication would not have to continue at that time. My first relapse, which occurred early in the fall of 2002, was not nearly as frustrating as the time leading up to my first diagnosis - I now knew what to expect. At that time, however, my frustration came at the hands of a physician. In between ending medication and my first relapse, I'd moved 1600 miles away and, naturally, changed physicians. My new family physician recommended visiting an Endocrinologist, whose specialty would make my course of treatment an easier process. While this new specialist acknowledged that the medication I'd previously been prescribed had "done the trick", he wanted to try a new variety. After three weeks, my symptoms continued to worsen. After five weeks, I still felt no relief. At six weeks, I politely asked to be changed back to the medication I'd previously taken, and within two weeks, my symptoms were under control and life was returning to normal. I achieved a second remission seven months after my first relapse, just in time to deal with another (unrelated) health problem that necessitated stopping all medication.

After that other issue was resolved, I began to feel symptoms of another relapse just after Christmas of 2003. In the meantime, I'd made the decision to discontinue visits to the specialist with whom I'd fought over medication and my new family physician moved out of state. More medical drama ahead! I decided to remain with the practice my family physician had been with and visit with the newly appointed physician. It was at that time that I discovered that not all physicians believe in hyperthyroidism as a "real" disorder. The new family physician told me that he didn't believe I was actually suffering from Graves' disease. He believed I'd been misdiagnosed more than two years before, and that my actual problem was depression and anxiety. (See the end of this article for a listing of symptoms.) While I insisted he write me a referral to visit another Endocrinologist, he, instead, argued that I needed to begin treatment immediately for depression and anxiety. I was, needless to say, extremely upset! I felt that I knew my own body and I didn't believe that after so many blood tests, a misdiagnosis was possible. I decided to try to strike a deal with the doctor. I would agree to undergo the treatment he felt necessary for a set length of time, and after that time, if my symptoms hadn't abated and my blood work still revealed abnormalities, he would give me a referral. The doctor obviously felt that this was easy money on his behalf - there was no way he thought he could be wrong.

My first period of mistreatment due to his misdiagnosis was hell on earth. The medication he prescribed wired me for sound. A common symptom of hyperthyroidism is hyperactivity and the inability to wind down, and this medication multiplied that to a level I could not ever imagine reaching. I didn't sleep for more than a week. Not a wink. After the medication was in my system, I was in a constant state of "up". As a result, I felt manic and due to my complete lack of sleep, was more exhausted than I could describe - and yet sleep was still not a state my body could achieve. After the initial ten-day run (I was determined to stick with the program), I revisited the good doctor for a check-up. He observed that I looked quite tired and upset. I acknowledged that I was and proceeded to give him a total run down of exactly how bad the medication had made me feel. I might not have had anxiety problems before that medication, but afterwards I was an absolute wreck. Unwilling to give up his diagnosis, the doctor explained that certain patients react differently to certain medications - a conversation eerily reminiscent of one I'd had with the previous specialist, when arguing to resume a prescription I knew to be effective. I was given a prescription for another depression and anxiety medication and another appointment ten days out, with the doctor now confident he had the problem licked.

My second period of mistreatment due to his misdiagnosis was, again, hell on earth. This new medication had the opposite affect from the first - it stripped away all of my energy, resulting in periods of excessive sleep broken up by a lethargic attempt to attend grad school and work my full-time job. Disaster. Whereas I hadn't slept a wink for so long a time, I now couldn't get enough sleep to make my body run. On top of that, I truly began to feel depressed in a major way. It was like living in a black hole. But I stuck it out! At the end of my second ten day period, I went back in and the doctor again observed that I looked unwell. He tried to suggest a third medication, but I'd had enough - nearly a month as a guinea pig and not only had the medications induced new symptoms of anxiety and depression, the symptoms I knew to be related to the disorder I knew to have had grown far worse. My blood pressure, despite my lethargy, was skyrocketing and as a result, my body was constantly shaky. I couldn't even walk a flight of stairs - my legs shook to hard for that simple task to be accomplished. I'd also lost enough weight to make me look like a walking skeleton. I put my foot down and demanded a referral - I'd played his game; it was time to play mine.

The second endocrinologist I visited was an extremely nice woman who took one look at me and about flipped out. Not only was I given a prescription on the spot for my hyperthyroidism - the exact drug I knew to be effective - I was also immediately placed on blood pressure medication as well, because of how bad it had become due to the delay in time in starting appropriate treatment. Relief! This new specialist recommended that I look into a radioactive iodine treatment that is sometimes used to irradiate the thyroid and bring about permanent balance. I did seriously consider it - and talked to several patients who had it done - and made the decision not to pursue that type of treatment. First, the treatment is imprecise, so many patients who find themselves with high thyroid output previously now find themselves with too little and as a result, additional health problems. I'd rather deal with the problems I know rather than new ones! Second, as long as my illness can be controlled through periodic treatment, I see no need to take so drastic a measure. And finally, I'm tired of being a guinea pig! At the time of this writing (February 2007) I have been off medication since October 2004 - not a bad remission time! I can feel symptoms starting to come about again and will go to the doctor in the next few weeks to have them monitored - a pattern I will follow the rest of my life. Eventually, it may go away - for good - on its own. More likely, periods of remission and relapse will continue. It's become a common occurrence for people new to my life to comment on my size - but hopefully as time goes on, I can help bring them to a level of awareness of when thin isn't in!

Graves' Disease and other hyperthyroid disorders are more prevalent than you may realize! The listing that follows, taken from WebMD, lists common symptoms. If you feel you may have a thyroid disorder, see your doctor immediately to have simple blood work run!

• You may feel nervous, moody, weak, or tired.
• Your hands may shake, your heart may beat fast, or you may have problems breathing.
• You may be sweaty or have warm, red, itchy skin.
• You may have more bowel movements than usual.
• You may have fine, soft hair that is falling out.
• You may lose weight even though you eat the same or more than usual.

For more information on hyperthyroidism, visit WebMD.