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Graves' Disease Resource Page
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DIANNE'S STORY I was diagnosed with Graves' Disease in 1996, but realize in retrospect that the symptoms began in 1980 following the birth of my son. I'd had intermittent periods of sleeplessness, heart palpitations, anxiety with emotional agitation, etc. that I'd attributed to life events (but which didn't necessarily clear up when I changed my life). These symptoms came and went for a number of years (but stopped entirely after treatment). In 1990 the symptoms increased in range, severity and frequency. I'd consulted my family doctor about the physical symptoms and went to counseling for the emotional ones after my doctor attributed the physical symptoms to "stress" when he found nothing wrong physically (though he never did a thyroid test). He pointed out to me that I was upset and my hands were shaking, and diagnosed my overactive digestive problems as irritable bowel syndrome. (All those symptoms are classic hyperthyroid symptoms.) By 1993 I began having intermittent painful muscle spasms, but 1994 was the year my troubles began in earnest. Besides the muscle cramps, I also began having pain (off and on) in my feet (when standing or walking) that was so severe in the morning (or when I first got up from sitting) that I thought I had arthritis. I'd been generally tired for many years, but thought it was because I was a single working mother. My fatigue increased to extreme levels, but I thought it was a result of trying to work and maintain a household and a relationship. My emotions were out of whack totally, and I blamed that on the relationship also. Pain developed in most of my joints, which reinforced my idea that I had arthritis (and perhaps carpel tunnel syndrome). By 1995 I noticed significant muscle weakness, and though I was an avid bicycle rider and physically active in my job as a mail carrier, I thought it must be caused by getting older (I was in my early 40's). On a hike with friends I was unable to step onto a rock using my thigh muscles. My appearance changed, and I noticed that I hated looking at photographs of myself. I was suddenly receiving negative responses from other people, and I didn't understand why. I slept all I could on days I didn't work, and struggled to get out of bed on the days I did. I seldom felt like doing much of anything. I flew off the handle emotionally, which caused problems with people in my life (at home and at work). I almost intentionally sabotaged a relationship, and I felt like withdrawing from everyone. Nothing was right in my life. Besides that, I'd gained 10 pounds and couldn't get it off (although weight loss is more common with hyperthyroidism). But mostly I was just very tired, and began to realize that there had to be something seriously wrong.
I made a long
written list of all that was wrong with me (out of fear of
being told again that my symptoms were stress-related) and made another
appointment with my family physician; but this time, he hardly listened
to the symptoms before he said he wanted to do a thyroid test.
When the results came back a few days later (an
elevated Free T-4 level (2.50) with a TSH of 0.002, which is
moderate hyperthyroidism), he told
me he knew I had Graves' Disease as soon as I walked in the office
because of my eyes. He pointed out that my upper eyelids were
significantly elevated and I had significant protrusion of the eyes from
their orbits.
Apparently these changes had occurred so gradually that I hadn't noticed, though relatives who hadn't seen me for awhile had commented a few times. One of my nieces mentioned that I had a staring look that she disliked. For several years I'd noticed sensitivity to light, excess tearing in cold or wind, and frequent broken blood vessels in the whites of my eyes, and vision problems; but hadn't thought too much about it. I could now see the eye changes in the photos of myself I had disliked for several years. I was referred to an ophthalmologist for the eye disease, who ordered CT scans of the orbits. My eye involvement was serious, but not severe enough to require aggressive treatments (such as steroids or emergency surgery), so I was advised to keep ointment in my eyes at night to keep them from drying out too much (he pointed out that my eyes weren't closing all the way at night), and to get a regular checkup to monitor changes. My ophthalmologist told me I could have corrective surgery once the eye changes had stabilized for six months. My family doctor also referred me to an endocrinologist. A thyroid scan with I-123 the next week confirmed the diagnosis of Graves', so I returned to discuss treatment options for the hyperthyroidism. Since my symptoms were interfering with my job (which was my family's sole support), I wanted a treatment that would correct the problems I was having as soon as possible. I read all the information available on the subject at the time, and chose the treatment most doctors in the U.S. recommend to patients, which is radioactive iodine (RAI). Had I understood in depth all the issues and what patients might actually experience with each treatment, I'd have made some different decisions. I was given 10 milicuries of radioactive iodine in June of 1996, a dose I was told was meant to slow down my thyroid without destroying all of it. (I wasn't told that this was only the initial effect; and that the radiation damage would eventually destroy the entire thyroid.) It was administered in the radiology department of the local hospital in the form of a pill, and I was told to stay at a room's length or more from family members as much as possible for three days (in order to minimize their radiation exposure). Beginning the third day after I took the pill, a sore throat developed (caused by an inflamed thyroid gland). The fourth day I began to have increased "classic" hyperthyroid symptoms. My pulse rate on diagnosis had been around 80 bpm. It now went up over 100 bpm, and I developed obvious tremors in my hands and other muscles with increased weakness, especially in my legs. Over the next few weeks the pain in my feet increased, and I had serious difficulty walking. My leg muscles were so weak I had trouble holding the brake pedal down on my mail truck while trying to work. Inderal (Propranolol), a beta-blocking drug commonly given to hyperthyroid patients to control some of those symptoms, caused me to have severe depression; so I was given a low dose of Xanax instead, which helped only a little. I continued to work, but when I'd used my muscles very long I became extremely weak and fatigued, and got muscle cramps. My heart raced with any exertion, and I was irritable, exhausted, and emotionally fragile. Due to the increased symptoms I had a number of emotional outbursts at work, which I was ashamed of. Family members found me difficult to be with. My appetite increased, but I didn't gain any more weight, except when I had fluid fluctuations, which were sometimes as much as 8-10 pounds in a 48 hour period. This went on for six weeks before the symptoms lessened any in severity, and it was horrid. I've since learned that some people have an increase in hyperthyroidism for a time after RAI, caused by release of extra hormone from the damaged thyroid cells. Rarely, this is severe enough to cause thyroid storm, which is a life-threatening condition requiring emergency treatment. By the third month after treatment I was calmer and had some decent days, though still with plenty of problems and muscle fatigue. For nearly ONE week, I even felt a calm and peaceful sense of well-being. Rather suddenly, about three months after I had the RAI, I began having HYPOthyroid symptoms; especially headaches, fatigue, a rapid gain of 5 pounds, sluggishness, irritability, and severe muscle fatigue, especially in my forearms. I was feeling BAD, so called my doctor immediately (who ordered blood work). I'd lost my ability to concentrate, focus or remember, and was exhausted and extremely irritable, wondering if I could even keep myself together at all. I behaved inappropriately at work, and lashed out at people who--I'm sure--must have viewed me as a nut case or a total witch . I was started on thyroid replacement (Synthroid), 0.75 mcg. I expected to feel much better soon; but continued to feel worse instead. The first four months after starting thyroid replacement were, quite simply, HELL, which I attribute mostly to an inadequate thyroid replacement dose. My muscles became so weak I had difficulty brushing my teeth or fixing my hair, and had to take a month off work. I felt exhausted all the time, and rather sick, similar to a bad hangover but different. I didn't care about much and didn't want to be around anyone at all. My memory and intellect felt impaired. I could barely muster the will to pay the bills or do basic self care, and even doing a task such as the laundry seemed like a major days' accomplishment. I gained nearly 20 pounds, although my meals were healthy, very light, and I had no desserts, sweets, alcohol, or junk food of any kind. The hypothalamus/pituitary mechanism that regulates TSH (thyroid stimulating hormone) levels "switched off" while I was hyper (rather like a thermostat in a warm room), and remained artificially suppressed, which is not uncommon after a period of hyperthyroidism. (The TSH level is supposedly the most accurate measurement of whether the body is getting the right amount of thyroid hormone.) The TSH reading remained undetectable until I'd been on synthroid nearly 5 months, so the free T-4 level was used to monitor my levels. Unfortunately, my endocrinologist obviously believed that a low-normal Free T4 was fine, even though I told him I felt horrible. (It's now known by most endocrinologists that people on thyroxine replacement need a high-normal Free T4 to be "normal".) Symptoms were less severe for several weeks, and started worsening again, with more tiredness and the muscle weakness increasing. Pain in my feet was still severe. My endocrinologist did tests to rule out rheumatoid arthritis or other causes for the foot pain, which all came back negative. He kept telling me I just needed to be patient. I told him I wished I'd never been treated, because I'd traded some problems I could live with for a horrible state that was so bad I wouldn't want to go on, if I didn't think it would get better. By mid-Feb. 1997 my TSH began to rise, and went up to 5 (normal for my lab 0.4-4.0), which indicates hypothyroidism. The free T-4 (thyroid hormone) was the lowest "normal" reading possible. Since I wasn't feeling well, it appeared to me that indicated the need for a raise in Synthroid dose, but my endo refused to raise it. He told me it would take more time for my symptoms to resolve, and that the kinds of complaints I had were typical for women. I'd been a woman all my life and hadn't had these symptoms (forearm muscle fatigue, extreme puffiness, brain fog, a sick-tired feeling, etc.) until my thyroid was damaged by RAI--but I didn't think of telling my doctor that until it was too late. When I talked to him about the weight gain, he told me I probably eat more than I think I do (which was not the case). I realized that this doctor was not going to hear me, so I couldn't expect him to help. I left the office angry, and determined to find a doctor who would listen and give me credit for knowing when something was seriously "off". I had to wait a month for an appointment with another endocrinologist; and found one I still see, who does hear me and try to help. He told me that some people are very sensitive to thyroid levels and will have symptoms even within "normal ranges". He raised my thyroid replacement from 75 mcg to 100 mcg, promising to raise it again in 6 weeks if warranted. He examined my severely painful feet, and decided the pain was coming from the nerves (neuropathy), caused by my thyroid levels. He gave me a prescription for Desipramine, which is given to diabetics to help with their nerve pain, and said this kind of pain should resolve when my thyroid levels are stabilized. The muscle weakness in my arms, experienced as fatigue with light movement and the sense that no fuel is getting to the muscles, had been severe since I went hypo. This doctor agreed with the first that I had thyroid myopathy (muscle disease), which should also resolve. The Desipramine helped almost immediately with the pain in my feet, and within two weeks of the thyroid replacement increase my muscles were becoming more normal and the muscle cramps stopped entirely. I lost nearly ten pounds during the next few weeks, with no change in my eating. (I think much of that was fluid loss.) Except for a strange illness with nausea and ulcer symptoms that lasted several weeks severely enough I couldn't get out of bed (possibly a migraine syndrome caused by the Desipramine), I began to feel noticeably improved in every way. Over the next 3 years I required six more upward adjustments of thyroid replacement hormone as my thyroid continued to decline in function. My hypothyroid symptoms (especially muscle fatigue in my forearms, general fatigue, & foggy mental function) persisted unless my TSH was lower than 1.0 (0.3 or so was even better for me). Because of the constant changes in thyroid levels, I didn't ever feel consistently human until at least 4-5 years after my radioactive iodine treatment. I continued to feel tired a lot (especially in the morning), without much enthusiasm for my old interests. In 1999 I asked my endocrinologist to switch me to a replacement hormone containing both T4 and T3 to see if it helped. He was hesitant, but tested my Free T4 (which was slightly higher than normal and also tested my Free T3, which was borderline between normal and low--so he prescribed 160 mcg of Armour Thyroid taken in twice-daily doses. Within 2-3 days I experienced remarkable improvements in mood, energy, and brain function; and now I would never go back! For the first time in many years I didn't have to struggle to get out of bed in the morning (this has lasted nearly 5 years now), and my interest in productive living increased. The dose was raised twice more over the next two years, and in 2002 I finally had a year without any of the symptoms I associated with becoming hypothyroid following my 1996 RAI. In late 2002 my doctor switched my replacement hormone to Synthroid (T4) daily plus Cytomel (T3) [taken in three daily doses to keep blood levels of T3 even] for reasons discussed on the replacement hormone page. The amount of T3 I received in the Cytomel was less than the T3 in the Armour, and that combination didn't work for me. I felt unwell again, so my doctor switched me back to Armour, and I felt much better very soon. There were a total of five years of upward adjustments in thyroid replacement hormone before the process was completed. My endocrinologist says I now have no palpable thyroid tissue left. Though I'm feeling well most of the time now, I'm different than I was before the worst of the Grave' Disease began--mostly in the categories of memory, mental function, and the general ability to cope with stressful conditions. The most noticeable problem is the inability to switch my mental focus from one thing to another easily. Keeping my weight under control has been another challenge, but I've learned what I have to do to make it work. In 1998 I started on the road of eye surgeries at Jules Stein Eye Institute, UCLA (Los Angeles) to correct the eyelid retraction that had developed, including surgeries for complications and further lid retraction; and then for orbital decompression surgery in Oct. 2002; and what hopefully was a final surgery in April 2003. I hope the photos below will give information, hope and encouragement to those who are still living with the discomfort and disfigurement of Thyroid-Associated Ophthalmopathy.
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(see
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