The post for September 25, 2012 and the December 6, 2012, I describe by thyroid cancer journey and what I was going to do to protect Ebony and Sneakers from the RAI – Radioactive Iodine Treatment I was to receive on December 17th, 2012. I was operating on a lot of assumptions and guesses based on what I had been told and read. I found out that some of it was wrong information.
The whole process of my going off thyroid medicine, participating in the low iodine diet (LID) and then the radioactive iodine treatment (RAI) went much better than I expected. Don’t get me wrong. I don’t ever want to do that again, if I can help it.
It is done at least for now and there will probably be a follow-up in a year.
Here is a summary of that process:
1. Switching from Levothyroxine (Long acting) to Cytomel (short acting) thyroid medicine – November 16th.
2. Stopping the thyroid meds on November 29th – taking the last pill that evening.
3. Starting the Low Iodine Diet (LID) on December 10th.
4. Getting a special blood test on December 11th.
5. The tracer dosage of RAI on December 14th, a Friday. The tech went over the RAI protocols and gave me a list of what to do. Apparently the doctor was filling in for the tech who was gone that day. It was a relief to get more information about the RAI protocols.
6. The whole body scan was on Monday, December 17th in the morning.
7. The BIG Dosage of RAI (Radioactive Iodine) on December 17th as soon as it was ordered and delivered to the hospital.
8. Following RAI protocols for 4 days from December 17th to December 21st – Monday through Friday.
9. Stop the LID (Low Iodine Diet) at 12 noon on Wednesday December 18th and return to my regular diet.
10. Start taking Levothyroxine again on Thursday morning December 20th, 100 mcgs. It is slow acting and would take about 3 weeks to take hold and return me to “normalcy.”
11. Stop the RAI protocols at 12 noon on Friday September 21, 2012. Clean up per the RAI rules.
12. Whole Body Scan on December 26, 2012 – Have not heard yet regarding this test.
So it is DONE! The initial tracer dose showed that my throat is where the concentration of any remaining radioactive iodine and and no where else in my body.
What was it like for me to be off the thyroid medicine from November 30th to December 20th? It is different for everyone. I experienced the following:
- Foggy brain – my symptoms were slow thinking and slurring words when I talked.
- Sleep disruption and waking at 3 am and not being able to return to sleep.
- Tiredness but not enough to make me sleep 18 hours like I was hoping. More of a dragging feeling and loss of ambition. So the simplest thing like getting a hot cup of water to warm my hands seemed like too much work.
- I was clumsy – tripping or dragging my feet, dropping things.
- I was able to drive but my hubby took me to the appointments on the 14th and 17th for safety and because he needed to know what was going on.
- I was cold but not as bad as I expected. I did get chilled easier and had to use a heating pad to warm myself and a cup of hot water to keep my hands warm.
- Very blurry vision especially toward the end of the no thyroid meds and it has taken a good week and a half to go away. I was having trouble in the morning. This really bothered me.
- Forgetfulness: It was not as bad as I expected, but I was told that this was part of the thyroid illness and it was okay to forget to remember. HA! I left my health card at the lab and had to retrieve it. I almost missed one Cytomel dose and small things.
- I did not expect that my tummy would get upset and I would feel this awful feeling. It was not nausea because I tried the anti-nausea medicine that the Nuclear Medicine doctor prescribed for the BIG DOSAGE OF RAI. It helped some but not totally. I also have been using Tums after I stopped the LIDiet. It helped but not as much as I would like. I found myself not able to burp or my stomach didn’t gurgle.
- Constipation big time and it was suggested I take stool softener and other aids.
- I felt like I was melting because my muscles in my face were drooping and sagging and my arms felt heavy.
- Raspy voice.
- Taste buds are all messed up after the RAI and it appears it can take a while for them to return. So food is tasting very odd right now. Salivary glands are okay but my mouth does not feel right yet.
I was told my system was shutting down the longer I was off the thyroid medicine and these bodily functions that we take for granted were slowing down or not able to function. I believe I had been on thyroid meds a good 11 years prior to the removal of my thyroid completely at the end of September. So the longer I was off thryoid meds the worse I got. I returned to taking Levothyroxine on Thursday, December 20th, 2012 but it would take 3 weeks for it to get back to “normal.” As of today I have been back on thyroid medicine for 1 week and 4 days and things are improving for me.
How did Sneakers and Ebony fair when I went into isolation and had to keep my distance during the 4 days of the RAI?
They did great!
They didn’t understand why they couldn’t come near me, especially Sneakers. He hated the pet gate and tried to knock it down or move it. He reached out his paw and would pull at the wire mesh. He would sit by it and cry wanting to come into the bathroom and bedroom, but I wouldn’t let him during the 4 days of the radioactive protocols December 17th to the 21st – Monday through Friday noon. My hubby was not so good about the pet gate and Sneakers immediately took advantage running into the bedroom. He was recovered and put him back into the living room complaining all the way. Sneakers was determined to get passed that pet gate!
I have a 3 foot yard stick which I used to gently push Sneakers away and he learned fast to avoid it. After the initial gentle push or two, the minute I picked up the yard stick, he would move away. The lawn chair worked great and I sat in the middle of the living room wrapping a blanket around me and using the electric heating pad to warm me. Sneakers climbed on the Futon a good 4-5 feet from me and curled up and slept while I watched a little TV. If I thought I was too close I would adjust the chair and move further back. As long as I stayed beyond the 3 feet for 5 hours per day he was safe for the first two days.
The first two days are the worst when you are the most radioactive after taking the BIG DOSE. It washes out of your system very fast and the extra radioactive iodine is gone within those first two days. The next 2 days are for safety reasons. My hubby went to a local motel and stayed there from Monday through Wednesday. He was home using the Futon for Wednesday and Thursday night. Ebony used his cubicles and the chairs by the dining room table next to the baseboard heaters.
My hubby bought me a 1950’s style Geiger Counter with a label CD – Civil Defense and it was very interesting to read me on Monday. I was at 2 and then on Tuesday I was at 1.5 and then on Wednesday I was like point .2. So this really showed how fast the RAI moves through your system. My hubby doesn’t agree with my readings but then he wasn’t around so I measured myself. I do have my travel papers and will need them for about 8 weeks. Radioactive equipment that is real sensitive includes the airport and the border crossing. My Geiger counter is not. I was not planning to go out of the country or fly so I don’t think I will have a problem but I carry them anyway just in case. A medical facility might have more sensitive equipment and the police as well. So far I have not tripped anything.
Ebony didn’t try to challenge the pet gate but he did watch me very carefully. He invited me to play on the living room floor but I could not till I was done with the RAI protocols. He was very good and kept his distance. There was danger that this process would cause them to not trust us but I think some how they knew something was going on and took it well.
On Friday, December 21 at 12 noon I was done with the radioactive procedures and cleaned up the house, washing the bed covers and blankets I used twice, collecting my waste like tissues, washing surfaces, removing the pet door, and righting the Futon so I could sit on it and cuddle with Sneakers. I really missed that part. Sneakers was like glue on me when he was given permission to be near me. The next day Saturday December 22, Sneakers was back to sleeping on the end of the bed and walking between us in the morning and purrrrrrinnnggg like crazy. By Saturday afternoon the house was back to normal and I was relieved it was over but I had a long way to go to get me back to feeling like my old self again. By the time it was Friday, December 21, 2012 I was not feeling too good.
On Saturday and Sunday Ebony and I were back to our little petting and catnip session on the living room floor in the morning. I was relieved.
I am very pleased that Ebony and Sneakers did so well. It was not easy to not pet them or cuddle with them but it was for their safety that I kept my distance. If I did get under the 3 feet rule it was very brief and quick.
My hubby did stop by on Monday. He was having fun with the Holiday Inn who gave him a king suite so he had a kitchenette and sitting area and he was really liking his stay there during my isolation. We decided it was best for him to be gone for at least 3 of the 4 days for his safety.
I have not gone into a great deal of detail on certain aspects of this process, such as what happened at the whole body scan or what other RAI protocols I followed, but I am willing to answer questions of anyone who has them, so feel free to leave a comment. You will find comments at the top of the post under the labels etc.
I finally did call the Radiation Safety officer phone number provided at Swedish and had a nice chat with him about the radioactive protocols and he told me not to worry about my sister’s septic tank. So it meant I could go to Christmas dinner. He said that the mass of the septic tank makes the small amount of RAI very insignificant and that because it it is far underground that gives added protection. In addition, the half life of the radioactive isotope is 8 days and it keeps decreasing 1/2 every 8 days. I wish I had called him before to verify and clarify statements made to me. I did go to Christmas dinner 9 days after my big dose and it was great.
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