Thyroid Issue!

It seems they got the dosage right with 137 mcg synthroid because I feel the same as I did when I had my thyroid! I don't miss it!

I assume you are kidding about the haz-mat suit. If that was a reasonable solution, they would not let you out. Best bet is to hang out in your condo for the most part and don't let kids sit in your lap! Lots of people have done this and it worked out. My friend even had young grandkids that she usually would provide daycare for, but she just took a week or so off. 

Soon this will be a distant memory!

Jan

CT, 

I too never missed my thyroid after surgery, and I've never had problems with my dose of synthroid in the past 9 years. This whole procedure goes really well for most people. 

The 2 weeks of low-iodine (I'm pretty sure I had 3 weeks, but maybe it just seemed that long because that restricted diet was tortuous to me), coupled with the fact that you are completely off the synthroid (at least that's how it was done in my case) made for a miserable few weeks.  Not painful, just frustrating. No dairy, no bananas, no eggs, no potatoes, no breads, no salt!!  You 'll be SO happy when it's over.  The radioactive pill has no side effect on me what so ever.  My only glitch was that after the Geiger counter test, I had to do a second round of the radioactive iodine because there were still cells hanging around. It just prolonged the misery a bit. Sorry I keep calling it misery BUT I LOVE to eat!

good luck in your journey. 

C-jay

Jan-

Yeah, I was being sarcastic about the Haz Mat suit.  But in reading the protocol sheet they gave me they said that there should not be prolonged contact with other humans for 7 days but "brief hugs and handshakes" are okay.  It just sounded kind of funny.  Would you want to hug me knowing I just took that radioactive iodine pill?  Also, I was told most of the radioactive iodine is out of my body in 7 days but the protocol calls for no "unprotected" sexual relations for 30 days.  There is no way I would endanger a sexual partner and have any sexual relations of any kind for at least 30 days.  It's just a bit odd to me how the protocol is described in the sheet they gave me.

C-Jay,

Although in past years the protocol did call for taking the patient off synthroid for 2 weeks, that is no longer the protocol.  They keep you on synthroid.  Instead, in the two days before you consume the radioactive iodine, they give you shots of thyrogen.  Thyrogen is a substance that dramatically elevates your TSH levels before your body is bombed with the radioactive iodine which then "seeks and destroys" any remaining thyroid cells which, due to being starved of iodine, suck up the radiation and are killed.  It seems that only remaining thyroid cells are attracted to and effected by the radiation, which makes the treatment so highly effective.

I am not looking forward to the iodine free diet, and the timing particularly sucks because in my area they have an annual event called "Lobsterpalooza" (basically a lobster and seafood festival) which I will not be able to attend.  Usually my whole firm goes and local civic leaders and it is a fun event with music and dancing and a raffle with prizes.

I did have a major concern about whether, being the colon-less guy that I am, my body would be getting a sufficient amount of sodium on this diet.  MY PCP reassured me that for 2 weeks it should not be a problem and I will get enough sodium by eating the fresh, non-processed meats (up to 6 ounces per day) that are allowed on the diet.

I am also concerned about a possibly "no fly" list issue or setting off radiation detectors at airports and my PCP told me that this is a valid concern and I do intend to discuss it with the the employee of the Nuclear Regulatory Commission I am required to meet with.

My endocrinologist’s office has implemented the following timeline as far as my radioactive iodine treatment:

August 31- I start low iodine diet for 14 days. I will continue to work at the office.

September 14- I will receive a Thyrogen injection at 8:30 AM. at endocrinologist's office.  This is a substance that elevates thyroid stimulating hormone levels.

September 15- I will receive a second Thyrogen injection at 8:30 AM. 

September 16 - I will consume a radioactive iodine pill at the hospital. At this point I will stop working at the office.

September 16-23 - isolated from the rest of humanity.

September 23 – I will have a scan done to determine if there are remaining thyroid cells in my body- cancerous or otherwise.  My endocrinologist told me they will light up on the scan if they still exist because of the radiation they have consumed.  

It appears as though my period of isolation and working from home will be September 16 through September 23.  However, my endocrinologist's office cautioned me that the final say on the exact period of my isolation, and whether it may extend past September 23, will be determined by a member of the Federal Nuclear Regulatory Commission, with whom I am required to meet the week before I take that radioactive pill. However, it is likely to be 7 or 8 days based on the protocol I received. When I am deemed safe, I will return to work.

I intend to ask Mr. or Ms. NRC rep if I will be put on a no fly list and when I will be safe to get past airport radiation detectors, this due to a possible trip to the Bahamas in November.

I'll put in a good word for you, with my buddies at the NRC, so you will be cleared for Bahamian travels

Hi, just an update on my thyroid cancer treatment which may be of interest to any J Poucher stricken with papillary thyroid cancer.

So as I write this I am quite radioactive due to imbibing radioactive iodine this morning.  I arrived at the Smilow Cancer Center at Yale New Haven Hospital at around 9:45 am.  this morning. With the radiologist’s blessing I preemptively popped an anti-nausea pill called Zofran at 9:55 a.m.  I ended up drinking a 150 millicurie dosage of radioactive iodine in liquid form at 10:15 a.m. They elected to give me the liquid rather than the usual pill format because I do not have a colon and have possible gastrointestinal absorption issues with pills. The liquid iodine is served in a small lead canister, totally enclosed, with a thin sipping straw sticking out. I had to drink a small quantity as it is very highly concentrated - 3 millileters, and including the saline flush probably less than a 1/4 cup of total liquid was consumed.  It tasted like salt water, and though not pleasant was certainly not undrinkable, especially such a small amount.  

After the radioactive iodine was consumed I was permitted to flush this down with water.  There were 3 radiologists as well as a radiation safety specialist present throughout the procedure.  After the consumption of the liquid was complete, the radiation safety specialist took out a geiger counter like device and while at a 3 foot distance, scanned my body with it for a radiation reading. My radiation level was off the charts, especially in my neck.  I was then discharged to go home.  So far I feel fine, although I am expecting that could change as the day wears on and possibly by tomorrow morning.  I am ready for all of that.  I was again told to suck on sour hard candy every hour starting tomorrow morning, in order to stimulate salivation and get the radiation out of my salivary glands, which is where the radiation will concentrate.  i have a bag of Warheads (the pucker party pack), sugar free Jolly Ranchers and lemon drops to add some variety.  The Warheads are great and really get the salivary glands going. I was also told to drink water constantly and that most of the radiation will be out of my body by Saturday morning.  I am allowed to go out to the gym Saturday if I wish.  I can return to work Monday, but I am in complete isolation at my condo until Saturday morning per orders of the radiation safety specialist.  I live alone so this isn't a problem.

I intend to watch the Republican candidate debate tonight for entertainment purposes only. Hoping everything will go okay and no damage to my salivary glands, but we shall see.

Are you allowed to take a warm bath? 

Maybe a leisurely soak and a hot tea with honey would help you get through the evening...and get some rest.

I find that lollypops work best for me when I need to keep salviating but don't want to ingest too much candy (does't happend often!)

Do you glow yet? (sorry just had to say it!)

What happens after this treatment? What is the next stage for you? How do they test for effectiveness?

Good luck and hang in there

Sharon

Sharon,

Frequent showers are encouraged. Tea, however, is banned on the low iodine diet, as is instant coffee.  Certain herbal teas, like peppermint for example, are very high in iodine.

The next step is a whole body scan on Sept. 23, one week from today, at which point my low iodine diet will end after 24 days.  The purpose of this scan is to determine if there are any remaining thyroid cells in my body (cancerous or otherwise), and if so, their location.  Thyroid cells "suck" up the radioactive iodine because they have been starved of it, and are killed by the radiation over the course of months.  However, in one week, any such remaining cells will "glow" on the whole body scan, and tell the radiologist (and my endocrinologist) the location and extent of any such remaining cells.  My endo Doc told me that if all they see is "normal neck uptake", or a few glowing cells where my thyroid used to be, my prognosis is excellent.  If on the other hand they see a glowing spot in my lung or my bones or elsewhere, there will likely be a followup scan and surveillance to determine whether this round of radiation killed it.  In most cases, the radioactive iodine is only given once.  So those are the next steps.