On November 7th I returned to the Endocrinologist for my 2nd appointment. He did a physical neck check, reflexes and blood pressure and then gave me a lab slip to check my levels. Why these doctors don’t have your labs completed BEFORE the appointment I will never understand. There is nothing to talk about at the appointment and you end up having a follow up phone call to discuss the results. Again, I wish I had copies of my lab tests from this point in my journey but I don’t. When my endocrinologist called me he told me that my thyroglobulin was still too high as were my antibodies and I needed to prepare for another round of RAI. I was not excited about this and when I asked him when he said “As soon as possible”. He told me to go off my Synthroid and that he would see me on December 27th for a follow up. He would check my levels again at this time. I was to start my low iodine diet (LID) on the 15th of December. This was depressing because Christmas was coming and it meant that I would not be able to eat the normal foods of the season.
A low iodine diet requires the removal of ALL items containing salt. This means no seafood, dairy, foods with carrageenan, agar-agar, algin, alginate or nori, egg yolks, red dye #3, chocolate, molasses, soy and potatoes. If you are curious just what this means take a look at a label on something you eat. I’ll bet you find a form of iodine or potential iodine in the product. So in a time when you are the most tired from being off your medication and going hypothyroid the most effort is required in preparing meals from scratch.
On December 27th I returned to my endo’s office and we reviewed my lab tests. My TSH had not risen to a satisfactory level so I had to wait. My doctor told me that he would like to ensure that I was not saturated with iodine prior to the RAI scan and treatment so he wanted me to do a 24 hour urine test. We would do this in January before the RAI.
On January 8th I had my pre-scan appointment to get the results of my lab tests. My TSH was 96.3 and Tg was 346 so I was all set to have my scan the following week. As we talked about the treatment I asked the doctor to give me advance notice as to when he would schedule the ablation because I had to find someone to care for my son who was now 15 mos.
The scan was scheduled for the 15th of January. I performed the 24 hour Iodine urine test and the results were a “5”. I a not sure what the unit of measure is for this test but my endocrinologist told me that this was the lowest level he had ever seen in all of his years of practice. This doctor was in his late 50’s so this was quite a few years.
On January 14th I arrived at yet another hospital to swallow a pill for the I-123 body scan. I was given 5 mCi’s of I-123. I returned the next day (1/15/01) for scanning. The technician in the nuclear medicine department did a full body scan along with an uptake. The uptake registered at .7% which would be the normal uptake at 8809 hours. This was an indication that of the dosage amount I received very very little was taken into my body and held. The normal range according to the report from the department was 8-33% after 24 hours.
After the scan and uptake were done I was instructed to take the folder with the results up to my endocrinologist. I waited a few minutes and then was escorted back to his office. His office was cold and sterile just like the rest of the office. I handed him the folder and sat in the chair opposite his desk. He took it from me sat down and then said “Now be quiet while I write a few things.” I was taken aback by his bluntness. As I sat there waiting for him to complete whatever he was doing I scanned his room. Behind him were many books on shelves and then my eyes zeroed in on a sign behind him. It said “Member of the Christian Doctors Association”. This should have brought me comfort but what was to follow in the next few minutes would discredit any positive thoughts I may have had.
My eyes returned to the papers he was writing on. I saw him reach for a small pad of paper and begin to write. It looked like a prescription pad. I couldn’t resist at this point and interrupted him. I asked “What are you writing?” He told me that he was writing the prescription for the RAI. I asked him when it was for and he replied “for now”. It was at this point I reminded him that I had no one to take care of my son if I returned home “radioactive”. I reinforced our prior conversation that I would need to have warning before my treatment so that I could make arrangements for the time I needed to be away from him. I still cannot believe what he did next. He put his pen down and looked me in the eyes. This was the first time he had looked at me since I entered the room. Then he proceeded to give me this speech: “Look I am not a salesman here. If you don’t want to do this then I am not going to force you. It doesn’t matter to me if you don’t want to do this. We can cancel this right now”. Those words are burned into my brain. I could not believe the insensitivity that this doctor portrayed. I was tired, achy and scared. I was undergoing the second RAI treatment in less than 1 year when it was supposed to be done in one treatment. I remember the tears welling up in my eyes and I told myself not to cry in front of him because it would only make things worse.
I asked him how long I would need to be away from my son after treatment. I already knew that the general recommendation was 10 days but I wanted to know what his thoughts were. He said “30 days”. I was a bit shocked and said “What am I supposed to do with my son. I am a stay at home mom and don’t have anyone to help with my son.” What little respect I had for this doctor at this point quickly left as he uttered the following words: “Just put him in a high chair in a corner and throw some food at him. He will be fine.” Oh my goodness! Has this man no heart. My baby boy was 15 mos old. He needed to be cuddled and rocked and sung to. I could never do that to him.
I told my endocrinologist that I would check with my husband on the best time to have the RAI and would schedule it with his office manager. I left the building and got in my car. Again I broke down. How could a doctor that had sworn to “do no harm” do so much harm to his patient emotionally? Didn’t he know how hard this was? Hadn’t he seen many patients go through this journey into hypo hell? Your hormones rage out of control, you ache all over and you can hardly stay awake. It is truly the worst feeling I have ever had in my life. It had gone from bad to worse. A nice personality ENT that didn’t know how to treat thyroid cancer to a nasty endocrinologist. He was skilled in his field but what was that worth if emotionally he was destroying my spirit?
The following day I called and talked to the office manager. We scheduled my RAI treatment for January 19th. Before I hung up I asked the office manager if I could ask her a question off the record. She said yes. I asked her if the Endo was always mean to his patients. She asked why and I told her my story. He had been short with me on other occasions but this time he was down right nasty. She said and I quote “Oh honey that’s just the way he is. You need to learn to deal with it.” Deal with it, I thought? But I couldn’t think of what else I could do at that point. I just needed to get through this RAI treatment and get well.