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Graves' Disease Resource Page
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Personal Stories Barbara Leigh has
Graves' Disease. She has graciously volunteered to be a Spokeswoman for the
National Graves' Disease Association. Almost a decade after I first contracted Graves disease, I still haven’t been able to find the answer as to how it all started, nor have I been able to get an answer out of my doctors. Though I lack any medical proof, I believe that my graves disease first came upon me after my only child, Gerry Haynes, died of A.I.D.S. in February 1994. The stress of taking care of him, watching him get sicker by the day and finally watching him take his last breath took its toll on my health. It was exhausting physically, emotionally and spiritually, and it was killing us both. Do I know this for sure? No, but that is what my heart tells me, and since no one has been able to tell me exactly what has triggered Graves within me, it’s the best and most logical conclusion I have come up with. A few months after I lost my son to A.I.D.S., the private club where I had worked for six years was sold, adding more stress to my life than apparently I was able to process in a healthy manner. By the end of 1994 I had lost a great deal of weight but didn’t see it as others did. For the most part, I thought I looked good. I was able to get into jeans I hadn’t worn in many years, and I felt okay, aside from the fact that I was nervous all the time. It still didn’t dawn on me that anything was wrong with my health. I have always been a little hyper so I didn’t pay much attention to my symptoms. That was a BIG mistake. Little did I know, but I was getting sicker by the day. By mid-summer 1995, I was down to 120 pounds, which for a 5-foot-7, 49-year-old woman with a medium frame, was a bit on the thin side. When my friends brought up that I was getting too thin, I thought they were jealous. In hindsight, I should have paid more attention. Not only did my weight shift, but so did my moods. I think people might have suspected that I had contracted A.I.D.S. from my son because I was changing right before their very eyes. I was totally unaware of my body, and what it was telling me - that something was very wrong. In September 1995 my boyfriend and I traveled to Baja, California with another couple on vacation. They noticed how nervous and irritable I was, and made comments that hurt my feelings. It seems that I had NO patience of any kind and the least little thing would make me cry, or I’d get angry when anyone said anything about my behavior. It wasn’t a fun trip, and no one knew I was sick or figured it out. My weight loss was thought to be my choice, and both my boyfriend and I liked the results. Our friends commented on how much they thought I had changed, causing me to be defensive and argumentative. It was not a happy trip. Still, I had no clue. We flew back in virtual silence and both parties pretty much felt our friendship was over. Years later after I recovered, I did see the couple and we made amends, but didn’t stay close friends. Like any progressive disease, my Graves was getting worse and it showed in strange ways. For whatever reasons, it began affecting how I drove. I’ve always driven with a purpose, perhaps even too fast for my own good, but now I was out of control. If anyone cut me off I would get furious. In other incidences I would not allow anyone to get in front of me and cursed those who drove too slowly. My dear friend Jessica tells me that in one case I cut right in front of another car, which nearly got us killed and it scared her to death. Of course, she screamed at me and I screamed right back. She vowed never to ride with me again. Another time I was riding with another close friend named Marilyn to San Diego. She also commented on how nervous I seemed, and again I dismissed the comment. I made people nervous just being around me, and I was in total denial. My body started showing more drastic changes than weight loss, but I still was still clueless. At night I’d sweat so badly the sheets would be soaked, which made cuddling with my boyfriend very difficult. I thought it was from going through the “change of life,” as women my age do. Up to that point, I hadn’t experienced any night sweats before and all signs indicated it was Menopause. It was something I was learning to live with, but didn’t like. And, since I was taking hormone replacement, I couldn’t figure out why I was sweating as I was but decided that the answer must be Menopause. I couldn’t sleep at night and was up and down most of the evening, making my days a nightmare from sleep deprivation.At first my sex drive was not adversely affected. In fact, I couldn’t get enough. Normally I preferred sex at night but now found myself enjoying it in the morning as well. Once I was diagnosed and had my thyroidectomy, my sex drive rapidly dwindled.I was on an emotional roller-coaster up and down and everywhere in between. Still, my boyfriend didn’t take notice that I was ill. When I did complain about my aches and pains, he told me it was all in my head. My friends, who had known me for many years and knew my personality, noticed everything much quicker than I ever did. When they brought up anything about my moods or me being different, I’d always get defensive and dismissed their comments. I was lost. Everything I did was at full throttle, like an engine that idled day and night. And, I was getting worse. It was like a light that had been switched on and couldn’t be turned off. My life changed forever. One weekend when I went bicycling with two other girlfriends in the marina, it was a disaster. To my utter disappointment, I couldn’t ride my bike. I couldn’t pedal and could hardly keep the bike up and they left me in the dust. It was humiliating to find myself waiting for them to come back after they experienced an hour of blissful biking. I could see the look in their eyes, which hurt me even more. I had always been a physical person in the past, but my heart couldn’t take the strain my body was putting on it. I could barely walk up one flight of stairs without gasping for air and resting before getting to the top. My legs cramped up and my body felt like it was turning to mush. I had a hard time loading my bike; I felt helpless but was determined not to show it. The day I truly became aware that I was ill was when a friend called me. I was making up the bed while talking on the phone, all along gasping for air. He asked me a very simple question – was I exercising? It was at that instant that I realized something was very, very wrong. I heard myself say “No, I’m making up my bed.” I couldn’t hold my mirror steady while putting on my eye makeup and that day I decided I was ill and needed to see a doctor. That was the day I called my doctor friend who later diagnosed me and helped me get into Cedars-Sinai Hospital for a medical checkup. Once I was examined, the doctor told me instantly that he thought it was my thyroid and took blood tests to determine how bad it was. He also gave me Inderal - heart medication - to help me calm down. It did help and after two days I had some relief for my shaking. I could finally sit still after months of restlessness. The next day he called me to tell me that I was a very sick girl, and that it was a good thing I came to him when I did because I had been straining my heart. He was a Beverly Hills doctor to the rich and famous and couldn’t treat me without any insurance, but said he’d help me get into a program. That is when he referred me to Cedars. That was the beginning of my journey that will never end. I suspect it will take me to different roads and many adventures with doctors, medications, and blood tests for probably the rest of my life. Cedars-Sinai is a wonderful hospital with a very good free clinic, if you can get into their program. I went right over after my doctor friend made the call to the clinic and waited to be seen. Once I was called in to meet with admissions, the clerk took one look at me and immediately started the process registering me into the program. I must have looked very sick as you have to jump through major hoops to be a part of that clinic. You have to show past pay stubs, income tax returns, anything they can think of to prove you don’t have or can’t afford insurance. Real estate is a hard business to break into and it was new for me, so I didn’t have a client-base built yet and everything was on commission. I got in. Free clinic doctors are mostly residents and interns. Occasionally a bona-fide doctor with experience might be on hand, but that’s too often not the case. Every appointment I had there was with a new doctor, and that had its drawbacks. I usually had to start from the beginning and tell my story over again and again. It seemed that I had blood test every time I went, and I was beginning to feel like a pin cushion. After weeks of taking Tapazole to control my antibodies, the doctors decided they should x-ray my thyroid to see where I stood. It was the consensus to give me the radioiodine treatment and not prolong the Tapazole program, which might take too long since I was already way past the stage where one can be helped with taking Tapazole for a year or so. I was in the hands of doctors whom I didn’t know, but had no other choice but to trust their judgment. I didn’t have any friends who knew about Graves or thyroid illness, so there was no one to talk to other then the many doctors I saw. I opted for the X-rays to see where I stood. The appointment was made to take the thyroid X-rays and hope for the best. The results were not what the doctors, nor I, wanted to see. They found a tumor on my thyroid, which ruled out taking the radioactive pill. That meant one of two things - that I had a cancerous growth, or it was benign, but neither could be proven unless they operated. It turned out it was benign. The doctors decided since I had no insurance and depended on the clinic, that I was too sick to take Tapazole for whatever time was needed to cure my thyroid (or if it would), and that taking out the thyroid was the best solution for me. I was sick and ready for any help I could get, so I readily agreed. Again, my life was in the hands of complete strangers. In a free clinic, patients still have to pay a certain percentage of their wages depending on your salary per year. The operation was going to cost me several thousand of dollars, but at that point I would do anything to feel better. The only thing I ever requested from Cedars-Sinai was to meet the actual doctor who would be operating on me. In my case, this was a resident needing to do a thyroidectomy, but at least he would see me awake and know I was a human being, rather than a woman on a gurney that he’d try his magic on. We met and it was the best thing I could have hoped for. He was a tall gentleman in his last year of residency. He assured me that he’d do his very best and that everything would be okay. He did tell me about the risks of losing my voice, and that if I spoke immediately after surgery, I would be okay. Of course, it was frightening to hear that I could lose my voice with the slightest slip of a knife. I was scared but decided to go ahead with the surgery and prayed that things would work out. My boyfriend took me in at 5 a.m. for surgery and stayed with me until they wheeled me in. He was more scared than I was. At that point I just wanted it to be over. Little did I know that it was just the beginning. The operation went well and I woke to seeing my love’s face. He had tears in his eyes. No more of “It’s all in your head” attitude and he was there for me body, heart and soul. I think we bonded more completely than ever before. I experienced a reaction to the anesthesia and went through terrible nausea. It was worst part of the surgery as far as I was concerned. The doctor showed up later on in the day once I’d recovered making sure I had my voice, which thankfully, I did. Later I lost my voice completely for almost two months which was scary, but I kept reminding myself what he had said, “If you can talk right after surgery, you’ll be fine.” He assured me that my voice would come back and eventually it did. After the surgery I took Synthroid medication to replace the hormones lost from losing my thyroid. But that started my next venture with Graves Disease – getting the medication right. When the doctors first diagnosed my Graves, it was a shock to hear those words. I thought it sounded horrible and that I was dying. None of the doctors ever took time to explain what Graves Disease was - not even after I was out of the free clinic and had my own Endocrinologist. I just couldn’t get my hands on the information I needed to process where I was at and where I was going with my disease. Eventually I left the real estate business and started working for a Japanese entrepreneur with full health benefits. I started on my journey with medication and finding the right dosage, which to this date, am still going through. Presently I do not have an endo doctor that I am happy with or feel comfortable with. The ones I’ve encountered lack a feeling of sincerity, mostly making me feel like I shouldn’t waste their time asking questions. I realize now that few know the full extent of Graves, and that it was left up to me to find out what I could about my disease. When I tried a new endo doctor he always disagreed with what others have told me. It leaves one to wonder, is there any real hope? The journey is long. I felt better when I was on synthroid medication and thought the worst was behind me. I started a new job working for a famous men’s magazine that offered great medical benefits, but the stress level was tremendous. It didn’t take long for my disease to blow up again. Apparently, the tiny piece of thyroid which was left in my body on purpose by the surgeons was found by my raging antibodies, and playing havoc as they do. They started making my thyroid grow and making me ill again. I was back on the roller-coaster ride and hitting top speed. Although I wasn’t comfortable with my doctor, I had no choice but to listen to his professional opinion, which was to take the radioactive pill. So that is what I did. He told me I am a medical mystery that it didn’t happen often where one’s thyroid grew back. It didn’t make me feel any better knowing I was a “miracle” because honestly, it was a nightmare. But my attitude was, let me get this over with. I was exhausted from feeling sick, tired, anxious, irritable, and all the other feelings one encounters with Graves. One morning after kissing my boyfriend good-bye, I got in my car and backed into his new BMW, knowing he was there. I was disoriented. The procedure was a relatively easy one and I was in-and-out in less than one hour. I was given a radioactive pill that was presented in a container and looked as though it belonged in a science fiction movie. The presentation made me aware that I was putting something very powerful into my body. I was informed to stay away from children or anyone around the conceiving age for about three-to-four days. I ran the whole gamut of flushing the toilet twice and washing hands twice. At least I was able to rest, which is what I needed most. After the RAI treatment, I was started on Levoxyl 50mcg, another form of Synthroid. To this day I am changing the dosage every so often. I’m presently on Levoxyl 75mcg and am due for another blood test. It’s about my fifth or sixth attempt to get the dosage right. Several months after the treatment I began to feel better. I could think more clearly, and wasn’t as nervous and disoriented as I was before. My appetite came back and my hair and skin looked much better. The only negative was it affected my eyes, which was confirmed by one of the endocrinologists. Now three years later I am feeling much better, but I still have my ups and downs. Now that I know more about Graves Disease, my main goal is to keep my dosage correct. Seems simple, yet very complex. I’ve encountered a lot of changes in my body, like thinning of my hair, aching bones, rash on my elbows, toenail fungus (which was treated and better), thinning of my bones (for which I’m taking Fosamax), and many other little problems that seem to come and go. About 18 months ago, I noticed my eyes seemed swollen or puffy, but seeing myself everyday I didn’t notice as others did. One morning at the office someone asked me why my eyes were so swollen. It was not exactly what I wanted to hear but then again, who better to gage your physical appearance than an objective associate? I made another appointment to see my doctor, and he dismissed it completely, so I looked for another endo doctor that was closer to my office for help. This time I was referred to an endo from my eye doctor. She wasn’t much better than the others. She put me on a month’s prednisone. It seemed to help the puffiness but as fast as I was on it I was off. I couldn’t get her to answer my calls even when she told me to call, so I was back to my old doctor with the horrible personality. We later parted ways when he basically told me to come in for my blood tests to be read or find a new doctor. With that attitude I found a new doctor. I went to my internist, Dr. Victor Amir, who said he’d monitor my blood test, and that is where I am today with the medical profession. Before I was diagnosed and treated, I had little support from friends. They looked at me and saw a woman who didn’t look ill, so they couldn't imagine what I was feeling. It’s difficult to get across what you’re going through when no one can relate to an illness about which little is known, and in my case, I didn’t know very much. After being diagnosed in 1995, I’d looked on the Internet to find information about Graves Disease or a support group, or others I could talk to, but wasn’t able to find any situation that worked for me. None of my doctors knew of any, either. I had asked them ALL if they could refer me to one. So I gave up trying to find a support group and didn’t surf the internet for information on Graves, until just recently when I decided to check again, and this time I was excited to find the National Graves Disease Foundation. I felt my prayers had been answered, and I contacted them right away. Once I found the Foundation I was thrilled to see how much knowledge and information is on-line, and the sincere and caring people who facilitate the site. I’ve learned more from the Foundation and from e-mails that NGDF Facilitator Dianne Wiley, and Jake George have sent me than from ALL my doctors, hospital and clinics put together. I have joined the Foundation, and hope that telling my story might encourage others to know that they are not alone. The foundation is a blessing for anyone who has Graves Disease, for loved ones and family members wanting to help, to better cope and be more supportive. I only wish I had discovered the Foundation sooner.
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