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I am new, but am barging ahead.

tazbeau
Posts: 6
Joined: Sep 2012

I have found a wealth of information on this site. I am so grateful and hope I will be able to support others here in the future as I gain more knowledge and experience. For now I am too new to be of much help. I am more afraid than anything, but am trying to moderate my fear by getting good info. Here is my personal info, and 3 questions for the night. I had a lot more, but found so many answers here. Thank you so MUCH!

Me: 60, F, FVPCT, capsular and vascular invasion, lymph nodes clean. Encapsulated Tumor 1.9cm, no thyroid capsule invasion.
TT and DX 9/14/12 (free T3,4, and TSH prior to surgery)
on cytomel.. varying between 25-50 mcg/day
RAI scheduled @ 10/24/12 at 75mci
first endo visit 9/24/12

other:
Controlled hypertension, but tend toward high stress. Heart issues in family. Non-smoker.
Being tested for SLE/Sjogrens.. multiple autoimmune DX.
waiting to see hemotologist--my WBC. 3.0 normal.. 4.5-11.0 primarily low neutro phils

Is 75 mci a standard starting dose?

Is thyrogen still nearly impossible to get? or is it worth pusing for. I haven't done well on cytomel, and am still adjusting that, but until today I have been operating only on info I found on the internet, and it is hard to ask good questions of the endo when you don't know what to ask. I swear there is a "hyper" hel and I have been on it for the last 9 days, and got some sort of viral infection/stress reaction after surgery and had multiple low calcium episodes following surgery. Not sure thyrogen is for me, but "hypo" hell sounds REALLY bad.

I was given a low iodine diet that varies GREATLY from others I have seen. I have copied it here. Any comments? I can't believe cheese is ok, nor that it doesn't mention soy, processed foods etc. Anyone know why or seen a similar diet?

my instructions:
2 weeks before scan avoid:
-medications containing iodine (ie multivitamins cough syrup)
-health foods containing iodine (ie sea kelp, seaweed, sea salt)

Please start a low iodine diet 5 days before the dose and for 3 days after your dose. You can do this by avoiding or limiting the following:

-breads made using iodine
-Dairy products (one cup of milk or yogurt is fine)
-eggs
-red food dyes (found in cereals, candies, and vitamins)
-Restaurant food
-Seafood (sal****er fish, shellfish)
- foods that contain
-iodized salt
-iodinates
-iodides
-algin/alginates
-agar

Below is a list of foods that are fine to eat while avoiding Iodine:
- baked goods and deserts
- butter,margarine, oil, mayo, gravy, and salad dressing
- cereals
- cheese
- chips
- coffee,tea,sodas
- freshwater fish
- fruits and vegetables as well as their juices
- gelatin deserts
- jams, ,jelly, honey, syrup, and sugar
- meats and poultry
- nuts and popcorn
- pasta
- peanut butter
- soups

These are the guidelines for a low Iodine diet. You may make adjustments as necessary.
If it is not possible to follow the guidelines, your procedure will not be rescheduled.

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

There is no standard RAI dose. When I had mine done, the dose wasn't set until I had taken the pre-RAI body scan to see what the surgery had missed and if the metastasis had spread farther than thought. Your doctor may have a good idea what dose he wants to use from the results of your surgery, but I bet he'll also use the scan to make his final decision.

My RAI dose was also 75 mCi, which I believe is considered a small dose. My endocrinologist explained that based on the results of the surgery and the scan he believed there were no papillary foci left. So he decided on a small dose just to make sure.

FYI, my surgery consisted of a total thyroidectomy and central neck disection {right side} which removed fifty five lymph nodes. The reults of the surgery were four papillary foci {two in each lobe} ranging from .8 mm to 2.6 mm and two lymph nodes containing metastic foci. If not for the small size of the foci, he said he may have recommended against any RAI at all.

From the size of the dose they're recommending for you and that I also had the same size dose, considering what I was told by my doctors when the dose was determined, I think they are pretty sure the surgery got everything. But, practices vary from place to place, I think you should ask your endo, or whoever set the dosage for your RAI, why they chose 75 mCi. If they say the same sort of things to you that they said to me when I asked the same question, you'll rest easier like I did.

===

Nearly all processed foods have salt in them. I imagine this is done for taste and as a preservative as well. If you check the labels of processed foods, you'll find salt is almost always one of the ingredients. This is why I included it in my ealier post in another thread. But, like I said before, it's a LOW iodine diet, not a NO iodine diet. You should do what you and your doctors are comfortable with. I probably went overboard when I did my LID, trying to get as close to NO as I could.

Alan

tazbeau
Posts: 6
Joined: Sep 2012

Thank you for your input Alan. I suspect I will go overboard on the LID even if "my" diet isn't very strict as written. It seems important to the success of RAI, and I rather not have any do-overs if it can be avoided. I suspect we all feel that way. Your comments on the amount of radiation are very reassuring.

Baldy wrote, The doctor said "If not for the small size of the foci, he said he may have recommended against any RAI at all."

I don't understand the above sentence. Did you mean if not for the NUMBER of foci? Why would the small sized foci suggest RAI, and large foci, by implication, suggest not doing RAI? Guessing here, if they were really small they could be missed? But then any cancer can be small and be missed. Obviously this statement is confuses me.

----

One of the things that is puzzling is why only 5 days on the LID I was given? I realize that salt may or may not be iodized; that it is a low iodine diet, that all processed food has salt (perhaps iodized and therefore a risk) and that all food contains some salt and maybe varying amounts of natural iodine even if the salt isn't iodized. Most diets I have seen advise against processed foods and dairy, no exceptions. My LID doesn't warn against most of the forbidden items I have seen on other diets. Cheese is loaded with salt, is a dairy product and is allowed on my diet. I just don't get it.

I realize I can go very conservative and avoid most large amounts of iodine. I am wondering why the diet I copied here is so liberal, Why the wide variations in diet? Even my internal med doc said that the LID I was given was VERY short. He said it takes longer than 5 days to wash iodine out of your system. I don't do well with inconsistent information.

I was handed the diet sheet as I walked out the door. There was no time to look at it or ask questions. I know the endo is a good doctor, but I won't see her again until after RAI & access is not easy as my driving is limited. I WANT to trust the process. What is the saying "trust in the Lord but paddle like hell for the shore"? It would seem that I am a big advocate of paddling. The real life experiences of others are indispensable for learning and understanding. Because experiences aren't books; they are real.

Baldy's picture
Baldy
Posts: 229
Joined: Mar 2011

Hi tazbeau,

Yes, because of the small size of the foci, he thought it possible {but unlikely} any thyroid fragment left by the surgery could still contain a cancer foci. Both my endo and my surgeon explained that because of the location of the thyroid and it's proximity to several important nerves and blood vessels plus the parathyroids, it was almost impossible not to leave some small fragments behind.

===

Your LID does seem to be less rigorous than others I've seen. I think this is just a case of standards varying from place to place. Others in this group have posted the diets they were given and they each differ to some extent. I seem to remeber one person who was told no special diet was necessary.

I still have the sheet I was given when I did my RAI {April 2011}, the LID lasted two weeks ...

ELIMINATE
vitamins that contain iodine
seafood
iodized salt
sea salt
canned soups & sauces
chocolate
soy sauce
processed or cured meats {cold cuts/bacon/ham/etc}
sauerkraut
bread, pancake & muffin mixes
molasses
food that contains red dye
food that has "iodate" listed as an ingredient

LIMIT
milk
yogurt
ice cream
non-dairy coffee creamer
eggnog

When I did this last year, I went Googling on the internet and found a study which tried to determine if a low iodine diet effects the efficacy of Radioactive Iodine. It was a year and a half ago when I read it, but I'm pretty sure it said there was no direct evidence a LID effects how well RAI kills cancerous thyroid cells but further study is needed. Also, when I quizzed my endo about the LID {but before I read the study} he didn't seem too concerned as to how well I followed the LID. I don't know if he was aware of the study {I bet he was}, and/or if he thought since I was asking about it I would follow it as best I could.

Alan

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