It was incredible how many of those symptoms I had. The one I didn’t have was weight loss. As a matter of fact, I had gained a few. I also had no eye problems, with the exception of being born with ptosis on my left eye, had 2 surgeries before the age of 8 to correct. No bulging of the eyes though. I had read about a few of the symptoms of hyperthyroidism having to do with Grave’s disease, but read no further on that subject. I made an appointment in February of 1998 to talk to my doctor.

When I called, I told the receptionist that I was symptomatic of hyperthyroidism. She said, "hold on a minute". So she put me on hold. The next thing I know, the nurse is on the line asking me questions about how I feel. My symptoms were: severe heat intolerance, heart palpitations, lump on my neck, hand tremors, not sleeping, a lot of insomnia, frequent bowel movements. She said she could get me in the next day. I freaked! She made it sound like an emergency. So, the doctor was full, but the Physicians Assistant would see me. So with my Mom in tow, we went to the doctor. Mom came for moral support, I was 31 years old at the time. When the PA came in, she shook my hand and it was drenched with sweat. I was so embarrassed. She seemed to be watching my hands as I talked. Later she said she was watching my hands shake. My pulse rate that day was over 100, my blood pressure was fine. The PA examined my neck, the bulge, and left to go get the doctor. Her concern was whether the lump was attached to my thyroid or not. The doctor came in and examined, and immediately said, "it’s attached" and left the room. I thought I was going to gag to death from all the pushing on this lump. It was awful. She (the PA) ordered blood work, and a scan. I had no idea what the scan was going to be about. They called me 2 days later with blood test results. My tsh was .003. The finding was definitely hyperthyroidism. Next we get the scan.

A week later, I went to the hospital by my self thinking I would get a simple x-ray of my neck. Waited my turn and when they called me back, I went and this girl had me fill out a simple form, and then handed me a pill and a cup of water. I asked what it was and she told me it was radioactive iodine I123. She said that it was used to measure how much I absorbed. I was left confused, but took the pill. After I swallowed it, she said, ok, we’ll see you tomorrow, same time. I said, "what?" Little did I know that I had to wait 24 hours to do the scan. So, I went home and all was fine. Still, next day, I went back thinking they would just do an X-ray. Geez, was I in for a shock. Went in, and they called me back immediately, I thought I was so special because I didn’t have to wait like everyone else. I was special all right. They had me sit on a stool and took some sort of picture of the top of my right thigh. Said this was to determine how well I absorbed the rai I123. Oh, that was easy. Ok, now hop up on this hard plastic table, put the pillow under your neck and tilt your head back as far as you can. Now, hold completely still, don’t swallow, and don’t move. Each scan will take approximately 25 minutes, and we’ll need to do this 3 to 4 times. So as to get all the different angles. Then this big round thing lowers down over my head, just 2 inches from my face. It was all I could see. Talk about anxiety attacks! I asked what would happen if I swallowed. Their reply? We’ll have to repeat the scan. Well, there you have it. Would I dare swallow? I think NOT! So 1 ½ hours and 100 anxiety attacks later, we’re done. I could go now. I didn’t think I would be able to drive the 30 minutes home. But I made it. And I was spent. Now the waiting.

Went back to the PA, she discussed options for treatment with me. The results from the scan read as follows:

‘The 24 hour thyroid uptake value is 44% and is high. Thyroid scan demonstrates a nodule in the right upper pole, which does concentrate radioactive iodine.

IMPRESSION: HIGH 24-HOUR THYROID UPTAKE VALUE OF 44%. MODERATELY ENLARGED THYROID. NODULE IN THE RIGHT UPPER POLE WHICH DOES CONCENTRATE RADIOACTIVE IODINE, MOST LIKELY A BENIGN FINDING.’

Most likely a benign finding? Scared me to death! Well, was it benign or not? That was my ultimate concern. So the PA went on to say that she had discussed this with the doctor, and that he felt comfortable with the fact that it was benign, and that they could start me on Tapazole, which might suppress the thyroid and stop the symptoms. But, it could go into remission for 6 months to a year and come back. Or she could refer me to an endocrinologist. I didn’t even know what an Endo was at that point. My Mom’s history of cancer was such, that we felt it was important to go to the specialist and get a second opinion. So the PA gave me a referral to the Endo. (The only Endo in the area by the way). So, the day before my scheduled appointment with the Endo, they called to cancel, as the Endo had to perform surgery. They pushed my appointment up 3 weeks. I was devastated. Well, my day finally came. My sister accompanied me this time, as she works in medical records, and could maybe help me understand what the good doc was telling me. I had taken my thyroid scan along, and when the good doc walked in, before even introducing himself, he said, "It’s Grave’s". Well, you can imagine my surprise, since I had read nothing on Grave’s. He blabbed on and on about this and that, like I was supposed to understand anything at that point, I was in shock. I thought I had some really rare disease, and thought it might kill me, and what about cancer? No, the nodule was a diffuse toxic goiter. So, the rest of what he said was all a bunch of buzzing sounds to me. Good thing my sister was along. Because when we left, she was telling my mom that it was Grave’s Disease. And I had to ask, "are you sure he said that?" Yes he had said it. So I began searching for all the information I could get my hands on about Grave’s Disease. I struck gold when I found Dianne’s page. Well, the good doc had muttered something about RAI and surgery at the appointment, but it had not stuck with me. I had another appointment to see him in late April, 1998. At this appointment, I was a little more alert and tried to understand what he was saying. The decision was made to have RAI treatment on April 28, 1998. ( in my records, it is stated that we had a lengthy discussion about RAI, and that all my questions were answered, they weren’t )

April 28, 1998 D-Day

Bright and early, Mom and I get down to the hospital for my RAI. (As if I hadn’t been through enough!)

We made our way to the Nuclear Medicine wing, and finally got called back. They wouldn’t let my mom come with me. I went in this little room with a technician and he had me sit down while he "prepared" my dose. Whatever. A few minutes later, he came back in with this lead-encased vial. Clunked it down and started getting out rubber gloves. He gave me one, and he put one on. He said for me to put it on the hand that I would be holding the pill with. So...I’m putting this pill in my mouth, but I can’t touch it with my hand? How ridiculous! He asked me if I gagged easily. I said no, and with a panicky voice, WHY? He just wanted me to know that it had to be swallowed, and if I gagged and it got on the floor, we’d have to evacuate the room. GREAT! I asked if this whole rai thing was even safe. I was pretty flipped out! Well, he handed me the cup of water and said to tell him when I was ready, and that when I was ready, he would put the pill in my hand and that I should immediately put it in my mouth and swallow the pill. So that’s what I did. Down the Hatch! He then asked me if I felt ok. I did. He asked me to sit in the waiting room for 30 minutes. I had to ask why, yet again. He said, and get this one, "if you were to get outside and vomit, we would have to send out a Haz-mat crew to clean up the mess." GREAT AGAIN! I had to ask if this would likely make me sick. He said no. But in the event that my breakfast didn’t agree with me or for any reason should I vomit, that it would be a problem. So, I sat for 30 minutes, worried about vomiting, and it passed and he dismissed me like a kid in detention. Gee, let’s go home. I had been instructed not to be around pregnant women, young children, etc. for 3 days, so what better excuse did I have for staying at Mom’s with the pool to lounge by, and of course she waited on me hand and foot, probably more for contamination purposes, but it was pretty cool. I had to flush at least 3 times after each toilet use, use plastic eating utensils, paper plates and cups, wash hands 3-4 times after each toilet use, the list goes on. How bizarre, how bizarre. It was pretty funny at the time, laughing that I was glowing like a martian. Looking back, I think my choice would be different.

June 1, 1998

I return for one-month follow-up. Blood drawn. Test results will be back in 3 days. I have to call them for my results. I explain that I’m mildly tired, slight headache.

June 11, 1998

Doc says, "you’re hypo" start synthroid 0.075, see you in one month. That’s it? I didn’t know the first thing about the test results, how to read them, etc. He said it would be unusual to go hypo that quick, but I had. ( keep this tid-bit in mind later in my story ) Wow! I was so excited, I thought this meant that I was cured. Already start the meds, and my life goes on, and I didn’t die going through it. I called everyone I knew, bragging about how good I was doing, going hypo already. ( my tsh was .20 not at all hypo ) My husband picked up my prescription on his way home that evening, and without blinking an eye, I popped one. Ready, Set, Go.

June 18, 1998

I can’t move, can’t get off the couch. I felt like a lead lump. Felt awful. Called the doc. The NA asked me what strength of synthroid I was on. I got the bottle and said, "the bottle says .175". She put me on hold and came back and said, "you’ve been given 100 mg too much. You should have been given .075 mg. Discontinue meds over the weekend and take the scrip back to the pharmacy and tell them they made a mistake. Get the right dose and start back on correct dose on Monday, call with any problems." Well, my husband took that bottle back and had a fit right in Kroger Pharmacy. They apologized for the mix-up, but got the slip out that my doc had called in, and low and behold it said .175. They insisted they hadn’t misunderstood a zero for a one from a phone call. So, we called my doc back and told them that they had called in the wrong dose, they said they had charted the dose when they called it in, and that they made NO mistake. Blamed it on the pharmacy. In the meantime, a very nice lady from Kroger Co. called and offered to settle. Sent us a check, and we signed an agreement that we would not sue them. That was fine. I was ok, talked to an attorney before we signed and he said, go ahead and sign it, accept the money, and that it would be hard to prove, a "he said/she said" type thing. So that’s what we did.

I continue the synthroid .075 through the fall and winter of 1998. All seems to be fine. My tsh is in normal range and rising. Went to my second and third month follow ups. Doc says my thyroid is almost completely gone. Come back in December for a six month follow up. I’m scheduled for December 17th, 1998.

December 4, 1998

I receive a post card from the Endocrinologist Office, stating that the good doc has left the area, moved to Arizona. Call with any questions, buh bye. So’s I call the doc’s office, ask what I’m supposed to do now. The office manager tells me that there is another Endo south of us about an hour away, he will see me, if I need to be seen. But I can really see my regular doctor for follow up visits. Good Luck and buh bye.

February, 1999

I’ve completely lost my appetite. I’ve lost 20 pounds in one month. Very nervous. Get the violent shakes every night. I feel like I’m going to pass out. Crying a lot. My head feels very heavy. Everything is on my nerves. Can’t stand light or noise. Withdrawing from my husband and 9 year old son. Everybody, just leave me alone. I can’t make it through a full week of work. Feel terrible. Nobody understands. What is going on with me? Am I dying? Going to see a new doc.

March, 1999

Appointment with the Endocrinologist about an hour south of me. Everybody says he’s good. We’ll see.

Blood drawn prior to my appt. Test will be back by the time of my appointment. The endo spends an hour and a half with me. Very thorough. I tell him everything that I’m feeling. I tell him that I’m drinking 3 liters of water a day. But I have no appetite what so ever. Zilch, gone, no food past these lips. I nibble, and it’s all I can do. He FLIPPED out on me. He was like a stuck record about the water drinking. He said I probably had a personality problem and needed counseling. My lab results came back all within normal range. Stay on current meds, and come back in one month. Ordered a chemistry panel, so more blood drawn. Quit drinking all that water, and buh bye. Will call you with test results. Well, they called me with chem panel results. No flags. But there were ketones in my urine. My father-in-law checked my blood sugar, via finger sticks, for 3 weeks, even when I was shaking, it was normal.

I decided it was the Synthroid, in my own mind. I cut my dose in half to .037 mg per day, and my appetite returned. Well, what have we here? A reaction to synthroid? According to 3 doctors, No Way! I called Mr. Endo number 2 and told his nurse what I had done, and that I wanted my dose decreased, and they could either do it for me, or I would doctor myself. She called me back and agreed to decrease my synthroid from .075 down to .050, but no lower. Thank You.

Started the new dose, and 3 days later, wham, the symptoms are back. So, I skipped a dose all together, and then went back to the .037. Every 3 - 4 days I would start feeling weird again, and skipped a dose and then felt somewhat better. If I started feeling too low I would slip in a dose of the .050’s. Well, this was all getting really ridiculous to me.

April, 1999

Could this be depression? Anxiety? Sure, it is, just anxiety and nerves. I’ll go back to my very first doc (the PA) and ask for Celexa, the newest and supposedly best, anti-depressant on the market. She was fine with that. Gave me 2 boxes of samples. I decided to go to my Mom’s again, to calm down, start the meds, and she would make sure I ate. I needed help, bad. The day I planned to go my Mom’s after work, the day was good. I felt almost human. Got to Mom’s, actually ate pizza for supper, a whole piece. Wow, maybe just getting away is the key. Got up the next morning, apprehensive as I was, I took half of one of the Celexa’s. Within one hour, I was in the basement, in the dark, shaking again. It was like all the weird feelings came rushing back, with a vengeance. Well, I freaked out all day. Didn’t want to be bothered. Mom left me alone, tried to get me to eat. I couldn’t. The Celexa made me really dry in the mouth, and I urinated about 20 times in about 3 hours. It was awful. Discontinued that stuff. Left Mom’s the next day, no meds in my system at all. Got home, started to cook supper. Just before supper was done, I had a major, blood boiling hot flash. It lasted about 2 minutes. I managed to eat some protein and some applesauce.

May, 1999

Ok, it’s time to doctor myself here. I went to the first doc office, had my blood drawn, just for myself. Got the results 3 days later. My tsh is at 2.51. Ok, it’s rising and I’m feeling better. Maybe I just need to be higher in the normal range. But sooner or later, I’m going to be full blown hypo, with no answer still. I have to do something.

I talk to a friend who is a nurse. Ask her about the doctor she works for, and she says, Dr. Julye is wonderful. She’s very open. At this point, I want to try something totally different from Synthroid. I’ve read that Synthroid has 3 more inactive ingredients in it than the others. I am thinking that maybe I am having some sort of reaction to an inactive ingredient in Synthroid. Plus, I have talked to several people on the About.com thyroid bulletin board. One lady says it could be that I’m having problems due to being started on Synthroid while still in the hyper phase of my disease. I wonder if that is true. Well, I am also trying to get all my medical records together to take to an excellent malpractice lawyer to see if there is something there. The bulletin board has given me quite an education on my illness. I never even knew how to interpret my lab results. I thought I was hypo, but was still hyper. I was never allowed to fall hypo and then be brought back down to normal range. I think there is definitely something there too.

At any rate, the new doctor, Julye, was awesome! She was all ears! Those are few and far between! She was fine with the fact that I had cut my dose in half, and further commented that if it made me feel better, then it was the right thing to do. She wanted me to continue on the half dose for 3 more weeks, and come back for results. She said she couldn’t take me back to the beginning and start all over, nor could she promise that I would ever feel like I did before this disease, but she could promise to help me find that "feel good" place in the normal range for me, and promise to keep me there. And so that was the plan. I agreed to stay on the Synthroid. Following her advice, 4 days later, the feelings started back up. So I called and requested something different, levoxyl. She didn’t hesitate at all. As a matter of fact, told me to continue on the same dose as I was with Synthroid (0.037). So, I’m a full week in to the levoxyl at this point, and feeling better than I have in months. I still have a heavy head sometimes, my ears still feel popped sometimes, but hey, this is definitely better. I will see her again on June 14, 1999, and we’ll see where my TSH is.