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Living with Graves
Replacement Hormone

About Me

In early 1992, I noticed I seemed to be having a number of eye infections. I would go to my local family doctor and he prescribed a steroid type eye drop to relieve the eye infections. The infections kept coming back after I finished the medicine, then we would go through the same process over again. During the same time I noticed that I was getting very jumpy and my hands and calf muscles would twitch and spasm almost uncontrollably. I switched from regular coffee to decaffeinated and noticed some relief from the symptoms for a while, but they continued to get worse. I also noticed an intense intolerance to cold and found myself driving around in the car (in Florida) with the heat on and wearing sweaters or light jackets. I also noticed that I could not stand bright lights and my short term memory became very poor. I mentioned all of this to my family practitioner, and he kept telling me it was stress nothing more. During the time frame of May to July 1992, I lost a total of twenty eight pounds even though I ate constantly. During this whole time I never thought to get a second opinion.

In July 1992, I was scheduled for a Navy reserve reenlistment physical aboard my ship at Mayport Naval Air Station. I was assigned to a guided missile frigate at the time. The ship's corpsman started to ask me routine questions during my physical and he noticed that my resting heartbeat was one hundred ten beats per minute. He then asked me if I had noticed any intolerance to heat or cold, had any eye infections, rapid weight loss, or experienced any nervousness in recent months. I replied yes to all of the above. He sent me to the base hospital for an EKG and evaluation by a Navy doctor. When I arrived at the hospital my resting heartbeat was still one hundred ten beats a minute. The corpsman asked me to lay there and relax for twenty minutes. The second EKG showed a resting heartbeat of one hundred twenty beats a minute. A Navy doctor was summoned and life as I knew it changed forever from that day forward.

The Navy doctor told me he was admitting me to the emergency room for further tests. As fate would have it, a Naval reserve endocrinologist was on call and he came in and examined me. We went through all the questions again, and he noticed my reflexes were very extreme and I was already showing signs of being exothymic (my eyes were starting to protrude) at that time. At this time the doctor wanted to admit me to the intensive care unit because he did not know how long the symptoms had been coming on and he was afraid my thyroid was on its way to a thyroid storm. It was at that time he thought it over and asked me if I had any recent pictures of myself. I stated that I had pictures of myself for a period of over four years. The doctor compared my civil service ID card, drivers license, family portrait and a Navy reserve ID card. Each picture was taken about one year apart, and the Doctor was able to show me that I had started to display symptoms of Graves three years earlier, and the disease had been building for some time. The doctor informed me he thought I had Graves and told me about the disease. He did numerous blood tests and sent me back to my ship. The doctor took my home phone number and address and the address of my local doctor. He had the results sent to my local physician which confirmed the diagnosis of a hyperactive thyroid.

My local doctor started me on PTU at a very low dose and started to follow up the dosage with blood tests every two weeks. He had to increase the dose numerous times until I hit a point that my blood work showed normal thyroid levels. This took almost six months. At that time he started to back off of the PTU to see if my thyroid would start working normally again. He was checking to see if I had Hashimoto's disease which is another type of thyroid problem. My thyroid levels went all out of control when he decreased the PTU which confirmed Graves disease. My doctor continued me on PTU for almost six months after that time. I still had problems with light sensitivity, heat intolerance and nervousness, and I asked the doctor what could be done to relieve the symptoms. He said I would have to get used to them because I would be on PTU for the rest of my life.

It was now time for a second opinion! I contacted a specialist in internal medicine for a second opinion on my disease. The second (and now my new doctor) told me a great deal about Graves and the associated eye problems I was experiencing. He sent me to an eye specialist and a second doctor who performed a thyroid uptake test. It was determined that my thyroid was very overactive and I needed to have it either removed or killed with radioactive iodine. The eye doctor informed me that my eyes had a fair amount of proptosis (bug eyes), and he did a baseline field of vision test as well as numerous other tests. The field of vision test showed no optic nerve involvement so the eye doctor scheduled me for a follow-up every six months. The radiation doctor gave me two options. I could have the thyroid surgically removed with a ten percent chance I could loose my voice or have radioactive iodine and have a two percent chance that my eyes would get worse. I opted for the radioactive iodine. It was now July 1993, one year from the initial diagnosis.

The treatment was simple. Drink the radioactive fluid from a lead lined jar and keep away from my family for six days. I had to eat on paper plates with plastic silverware, sit at least six feet away from my family and flush the toilet four times after each use. Simple! Sure beat the heck out of surgery on my neck. During this time I was monitored to see how my thyroid levels were. It was expected that they would taper off gradually, and they would start me on synthroid to counteract the decreasing thyroid levels. This did not happen. It seems that my thyroid was so overactive that the whole time it was dying off it was able to keep producing enough to keep me going. I remember the day my thyroid died!!!

I was at a water park with my son and one of his friends, and I started to feel flu like symptoms. By the end of the day, I was so weak I could hardly drive home. I spent three days in bed getting weaker each day until I called the doctor, and he had me come in for a thyroid test. The test showed I had no thyroid hormones in my system, and my body was in the process of shutting down.

Enter the synthroid!!! The doctor started me on .025mg of synthroid and upped it by .025mg increments until I started to feel more like my old self. This took months and the symptoms during that time were very trying on myself and my family. I would go through fits of anger, to depression, to elation, to the most classic case of the Chicago Blues. My family wanted to trade me in for a new model. The doctors said it would get better so my wife and son kept me. I don't know how, but they put up with me.

The doctors said cheer up it could be worse. Little did I know how right they were. I cheered up and things got worse. One day in September 1993, I noticed that when I looked up at a traffic light I saw two of them. I called my eye surgeon and told him I has seeing double when I looked up. He had me come right in and did an eye examination. The exam showed my right eye lost the ability to look up, thus the double vision. A new field of vision test indicated that I had lost some vision in one area of my right eye. I started to learn more medical terms that day. It also seemed my disk to cup ratio was too much. In plain terms it means my eyes were bugging out so much they were putting a strain on my optic nerves and creating a cup at the back of the eye where the optic nerve joined the eyeball.

My local opthmologist told me he was concerned about my eyesight, and he was going to refer me to Bascom Palmer Eye Institute two hundred miles away in Miami for a eye workup and eye surgery(s) as needed. Panic now set in and I was on my way to Miami. I spent two days at Bascom Palmer learning even more new medical terms plus going through ultrasounds on both of my eyes, getting checked for glaucoma, more field of vision tests than I have ever experienced before and I saw about twelve doctors in two days. The consensus was I had Graves disease and the eye muscles were swelling and pushing my eyes out of the sockets, thus keeping my eyes from moving normally. Eye muscle surgery was in my future. It seemed my eyes were not stable enough to do strabismus surgery to correct the double vision. I was told what warning signs to look for that my eyes were getting worse and was sent to see a pediatric strabismus doctor as well as assigned to a ophthalmic plastic and orbital surgery specialist for follow-up.

Enter the wonderful world of Frunel press on prisms!!! A Frunel prism is a plastic prism that fits on the inner part of your lenses of your glasses to correct the double vision. The prism was put on my right eyeglass lens, and it took away the double vision, but it made it very difficult to see well through it. Simple things that I used to do prior to the prism took on new meaning and challenges. It also made life with me more challenging for my family. The frustration of not being able to see well and having to be driven around until I got used to the prism was hard on me and my family. I went through different strengths of prisms for eight months until my eyes were stable enough for strabismus surgery.

Meanwhile my eye proptosis was getting worse, prompting changes in the strength of the prisms. Then one day at work the strangest thing happened. I was in a meeting. and I scratched my right eyelid and my right eyelid went behind my eye and pushed the eye out so much the lower lid went behind the eye too. There I sat ready to give a presentation in about three minutes and my eye had fallen out. This was not something I had ever expected, and I did not know what to do to get it back in. I took off my glasses and kept grabbing at the eyebrow and some how got the lids to come back into place. My outward appearance was one of relative calm like this sort of thing happened all the time, but my mind was calling out call 911. Only one person at the table noticed that my eye fell out, and I went on with my presentation with the start of one heck of a shiner. After the meeting was over, I excused myself and called the hospital in Miami.

Bascom Palmer told me to come down the next day and they would look at my eye. As it turns out, the doctor said this is a very common occurrence with Graves patients. It is called spontaneous globe subluxation. In layman's terms it means the eyelids get caught behind the eye, and your eye falls out. I found out it was a very simple procedure to fix it. The doctor told me to look down and pull on the eyebrow and everything would pop back into place. It worked like a charm. My eye got to the point where it fell out at least once a week. I got quite proficient at putting it back in without it even being noticed.

The plastic surgeon decided in November 1993 to do a procedure called a tarsorrhaphy. The procedure was a simple one. They basically cut away a part of the corner of the eye lids and sew them together to make the eye opening smaller. This surgery was quick and done under local anesthesia. This surgery had two benefits. One it kept my eyes from falling out, and two it gave me a more normal appearance. The right eye was protruding so much however, that in a week I tore out the stitches in it and had to go back to Miami and have the right eyelid sewed shut again.

In April 1994, My eyes settled down enough to have strabismus surgery done on both eyes. By this time I had what I referred to Marty Feldman eyes. The left one looked straight ahead, and the right one was looking for sparrows. Eye muscle movement was very poor, and surgery was finally able to be performed. The procedures were done under general anesthetic and recovery was very rapid. Surgery was performed as out-patient surgery, and my double vision was corrected. I still was not able to look up very well, but I could see again and I got rid of the prisms.

In an effort to relieve pressure on my eyelids, I was scheduled for a hard palette graft in both eyes in May 1994. This procedure was done under local anesthesia in the main operating room. Two sections of hard pallet were removed from the roof of my mouth and grafted into the lower eyelids of each eye. What this did was to raise the lower lids by almost a quarter of an inch. This gave me great relief of the dry eye problem that came up during the past year. It also allowed for the removal of the tarrosarhpy from both of my eyes. Recovery from the surgery on the eyelids was very rapid, but the roof of my mouth suffered for months afterward.

The hard pallet grafts worked well for a while, but my eye muscles continued to swell and it was about six months later that my eyes started to fall out again. Treatment with steroids to reduce swelling was discussed, but I have had adverse reactions to steroids in the past to that was discounted. The eye surgeon said I was not a good candidate for orbital radiation either. Orbital decompression was discussed, but the doctor was reluctant to do so since my optic nerve was not in immediate danger. However, my problem with my eyes falling out became so routine it was almost a daily occurrence. One night I woke up, and my right eye had been out for so long it was dry. I had to put drops on it to get it back in. It seemed that because it had been happening so much it didn't hurt anymore, and I did not notice it until I woke up. I contacted the doctor in Miami.

Orbital decompression was scheduled for February 1995. They did the left eye first. It was a three wall decompression, and it was done under general anesthesia. I was kept in the hospital overnight, and the pain was not intolerable. The eye settled into the sinus cavity and stayed straight. I did not have double vision like I was told was a possibility. One side effect of the surgery that bothered me at first was facial numbness. I was numb from the middle of my face right down the middle of my nose, upper lip and all my top left teeth. The surgeon has to deroute a nerve that is in the eye socket and this causes temporary numbness. I soon found out that the minor problem of no feeling in that part of my face was a blessing in disguise. No feeling,no pain!!! Recovery was swift, and the feeling came back for the most part within three months. By that time all the healing had been done, and discomfort from the surgery was nonexistent.

I had the right eye decompressed in March 1995. Same three wall decompression, same numbness and same recovery. The only difference was this time the eye did not settle well into the sinus cavity. My right eye was left looking at the bridge of my nose. Back to the Frunel prisms! The doctors kept decreasing the strength of the prisms hoping that the eye would begin working right. It was not to be. The eye stabilized in September of 1995, and I was scheduled for strabismus surgery again.

Strabismus surgery was performed on the right eye under general anesthesia, and it was adjusted with adjustable sutures after I woke up later in the day. Due to the severity of the swelling of my eye muscles and how the eyes settled, the doctors could not completely do away with the double vision. I was left with permanent double vision, but it was correctable with ground prisms in my glasses. Further strabismus surgery was discussed, but we (the doctors and I) decided that I could live with the ground prisms in my glasses for now. I may opt to have more eye muscle surgery in the future but not right away.

After we made the decision to leave the eyes alone and not do any more strabismus surgery, the plastic surgeon scheduled me for a Mueller's resection and levator adjustment for both eyes. I underwent the surgery in the right eye in March 1996 and I am scheduled for the left eye in April 1996. The right eye lid has returned to its normal position and the eye has received tremendous relief from dry eye syndrome. After I have the other eye done, the doctors in Miami said you would not be able to tell that I have ever had Graves disease. I look forward to that day.

My Graves disease otherwise has been kept in control by the use of Synthroid. I am on a daily dose of .225mg, and it keeps me just a little hyper but it is better for the eyes than being hypothymic. The tremors are controlled with a mild Valium of 2mg as needed, and I am currently being followed by an endocrinologist in Orlando. She keep close tabs with me, and I keep all my doctors informed as to my current medicine levels and surgeries. We work together as a team to keep me well and productive.

I have just added a new member to the medical team that works with my Graves disease. He is a psychologist who specializes in dealing with chronic diseases and how they affect families. Graves takes a heavy toll on relationships and counseling and support groups go a long way in letting you and your loved ones know that life will get better. I have started a Graves disease support group in my area and look forward to helping other people understand Graves and assisting them in getting the medical assistance they require and providing an ear to listen. As the one shoe company ad says. Been there, done that!.

Gerald (Jake) George, is a civil servant working for the department of the Air Force. He is an Acquisition Logistics Manager. The Naval Reserve is currently in the process of medically discharging Mr. George due to complications of Grave disease.