Monday, March 05, 2007

Thyroid Cancer - RAI and Hypo Hell

On May 18, 2000 I met with the radiologist to receive the RAI for the preliminary scan to determine the ablation dose. I was given 1.8 mCi’s of I-131 and told to return the following day for scanning. Years later I learned that using I-131 for scanning was controversial because it has a tendency to “stun” the cancer and thyroid cells and not allow them to take up the ablative dose effectively. Because it has an 8 day half life I had to wait another 8 days before receiving my ablative dose. It was 16 days after the lab test reading of 102 TSH. I was so hypothyroid by this point. I don’t know how I managed to take care of my son through this time. It was only by the grace of God because I had no one to help me during the day. My husband was wonderful and pitched in to help when he came home.

Through my research and involvement on the thyroid cancer e-mail groups I was to learn later that standard protocol was to go on a low iodine diet 2 weeks prior to receiving RAI in order to starve your body of iodine so that it would take up the radioactive form and kill the tissue. I was taking a multi-vitamin high in iodine intended to help with thyroid issues thinking that I was doing my body good. Consequently not much of the first ablative dose was effective.

I had done some research prior to my ablation and found that in previous years a patient was placed in a room isolated from all other individuals. Food was brought to their rooms and placed outside the door so that the individual was not exposed to the patient. The patient then took the meal inside their room and ate it. All remaining food that could be flushed was and the rest placed in a trash can located inside the patient’s room. All articles such as books and magazines had to remain in the room when the patient left because they were considered toxic materials. Three to four days after the RAI was administered hospital personnel in protective gear would enter the room with a Geiger counter to find out how radioactive the patient was to determine if they could be discharged.

On May 26, 2000 I entered the hospital, swallowed 2 pills for a total of 108 mCi’s of I-131 and returned home to spend the next 10 days in the lower level of my home. The instructions I was given for precautions were frightening. I wondered how it was determined that an individual given a radioactive substance was deemed to be safe to return home with a 6 month old child in close proximity. I was to flush two times, eat off of paper / disposable items, sleep alone for 5 days, wash clothing separately for 1 week, avoid contact with pregnant women and children for 10 days, and maintain 7 feet of separation from all others for 5 days. In bigger, bolder print on my instruction sheet was “Time and distance equals exposure.” How frightening! I figured it all probably had to do with money. Insurance companies do not like to pay for anything “unnecessary”. I guess keeping my family save isn’t that necessary. Little did I know I was to do this 2 more times.

My RAI had been administered on a Friday so that my husband could be home to take care of him. My husband took a week of vacation during this time. I was so thankful that he could be home so that I did not have to worry about him.

That night I laid on the couch watching TV in the lower level of our home. We had a daylight basement with a family room, full bath and two finished bedrooms. One was an office and the other a workout room. The family room had a pull out couch and this was to be where I would sleep for the next 5 days. I didn’t feel any ill effects that evening and began to think that all the horror stories I had read were not going to happen to me. I fell asleep that night only to awaken the next morning feeling like a major bout of the flu had hit me. My head hurt along with my joints and my stomach was upset. I slept for the next two days and don’t remember much of what occurred.

For subsequent days and nights as I felt better I spent time on the iVillage.com thyroid cancer message board. There were so many encouraging ladies on this board. They helped to ease my fears and encourage me when strange symptoms occurred. They helped me to keep pushing on even when I felt lousy and didn't want to deal with it all. I remember crying as I would type. I didn't know who these ladies were yet they understood exactly what none of my friends or family could ever know. I don't know what I would have done had I not found this support.

On June 1st I returned to the hospital for my whole body scan (WBS). How I drove to the hospital I still do not know as I look back on my condition. The test took around 1 hour to complete. The procedure is easy to perform. The patient lays on a flat table as a metal plate with films approximately 1 ½ ft square passes slowly over you. As it moves over your head you are instructed not to move or if possible swallow. As I was trying to sit up the vertigo hit me very hard. I felt very dizzy. I told the technician that I was so hypothyroid and got dizzy. She asked if I was on thyroid medication and I said “No”. My ENT had not given them to me yet. She said that I obviously needed them and that I should contact my doctor to get the prescription.

I contacted my ENT’s office when I got home and asked when I could get my thyroid replacement hormone. It was met with resistance. I told them that I couldn’t take it anymore. The vertigo was so bad that I could hardly stand up without passing out. The nurse in the office told me that I would have to wait until my follow up appointment with the doctor which was the following week (6/12/00). I was frantic and in tears telling them that I couldn’t wait. I had to have hormones soon or I was going to loose it. Mentally I was unable to think. I was so foggy brained and experiencing huge hormonal issues relating to anxiety and depression.

To recap, I had lost ¾ of my thyroid on 3/1/00, the remaining amount on 4/12/00 and TSH test run on 5/8/00 with a value of 108.2. It was now 24 days later and I can only imaging how high my TSH was at this point.

I called my OB/GYN’s office after getting off the phone with my ENT’s office. I explained to him my situation and how desperate I was. He told me to come to his office that day and he would see me and prescribe some medication for me. I remember sitting in his office in tears because I felt so awful. The scary thing is that I had driven to his office. I think God’s protective hand was on me through this time. Looking back I realize just how sick I was. My OB/GYN prescribed .100 mg of Levoxyl. I was so thankful to finally have medication in hand. My ENT’s office was not happy that I had gone around them to get medication. It felt like a power struggle that I was in the middle of. But I had a baby to care for and wanted to get my life back and no one seemed to care that I was a person beyond the chart.