So far, this has been the most frustrating part due to the uncertainty of the schedule and duration of all the scans and treatments involved. I thought that the treatment was going to be relatively cut and dry with a standard schedule but that was very far from the truth. First I met with my endocrinologist on, Dr. F. on May 5, 2008. I took her through my history, surgery, and medication I was on. She reiterated that I would need to go through a dose of radioactive iodine treatment, which I expected. I read many of the websites beforehand detailing what is entailed before the treatment begins - going off synthroid, going on cytomel, going off cytomel and starting a low iodine diet, etc. This was all pretty standard. However, I was trying to plan my life over the next two months or so and I was eager to get the exact dates in place so I can figure out when I can start running vigorously again, how many days off to take from work, etc. This was the beginning of many, many phone calls and misunderstandings. Before we can map out a schedule, you first need to get the date of when the RAI and total body scan is going to take place and work backwards.
Thyrogen Injection vs. Synthroid Withdrawal: The first major decision in preparation for the RAI and total body scans was whether or not to give me a Thyrogen injection (synthetic way to raise the TSH levels in the body and is given only a few days before treatment begins) or use a program of Synthroid withdrawal. While the pros of the Thyrogen injection is that you do not have to suffer the side effects due to hypothyroidism (from lack of Synthroid) for weeks leading up to the treatment, it is unknown whether or not it is as effective as the withdrawal method. According to my doctor and other literature, this method of preparing for the radioiodine scanning does not appear to be quite as effective as the old fashioned way. The synthetic TSH may miss some people who have metastatic thyroid cancer that could be detected using the standard way to prepare for this test, but this issue is not settled. The Synthroid withdrawal method is considered the "gold standard" and most effective way of preparing for a first time RAI treatment and body scan. Although this method is more uncomfortable for the patient (me), it gives you the best chance that nothing is missed on the scan and not having to go through all of this a second time. We agreed to go with the withdrawal method.
I was told by Dr. F that there would only be one scan/treatment and that I should call up nuclear medicine to set that up. Evidently, NYU nuclear medicine requires a pre/diagnostic scan to take place before the RAI treatment is given. While this makes perfect and sound sense, this was something I originally did not plan for and added another week or so to my schedule. After going back and forth with nuclear medicine and Dr. F for a couple days, I finally got a pre scan date of June 11th and a tentative RAI treatment date of June 19th. Finally, with the dates in place, Dr. F and I were able to create a schedule that I could use (based on the fact that I have been on Synthroid for 3 weeks since my surgery). Here it was:
May 13th - take blood test to get baseline levels before going off Synthroid
May 14th - 4 weeks before the diagnostic scan, stop taking Synthroid and go on Cytomel (quick acting medication that performs like Synthroid but leaves the body shortly afterward)
May 28th - Go off Cytomel and start the low iodine diet
June 9th - take blood test before I begin my diagnostic scan to make sure that I am hypothyroid enough
June 11th - diagnostic scan including tracer amount of RAI - I-131
June 19th - RAI treatment dosage is given
June 20th - go back on Synthroid and go off low iodine diet
I was happy to finally have a schedule in place. I am someone who likes to know what is ahead so I am able to plan other things. I don't care what I have to do, just tell me and then I will take it upon myself to do the rest. I was ready to tell my boss when I needed to take off and which days would just be a quick run back and forth to the hospital. Little did I know that the hospital staff was going to keep on giving me conflicting information on how long the scans were, waiting time, etc. It was extremely frustrating going back and forth to my boss with very few answers even though I just got off the phone with the hospital. I thought to myself, there has to be something printed that spells out the schedule of each scan. Therefore, the last few weeks of May/beginning of June were spent trying to pin down what is entailed once I have to go to the hospital for diagnostic scan. I was told that June 11th would be a short day - I meet with the doctor and take the tracer dose of RAI and then I could go back to work. The next two days would be take 4-6 hours and that I should probably be prepared to take off from work - so I did just that. Unfortunately the opposite was true. When I finally got to the hospital on June 11th, the schedule was laid out for me - in printed form! I tried not to take it out on the very nice nurse technician that was working for me. I told him that my life and everyone else's would have been made a hell of a lot easier if this list was given to me weeks ago and would have saved me and my boss from weeks and weeks of headaches.
No comments:
Post a Comment