Any advice before RAI treatment???

lesley1 said:

Thank you so much for your

Thank you so much for your reply. It eases my mind a lot.  I have a tendency to over think things but that helped a lot.  

Lesley, you're welcome,

To give you an idea of what I did, I was more concerned about the LID than my instructions asked me to be.  Some here have said that the LID was a big problem for them, but for me it wasn't.  I didn't follow any particular cook book (there is at least one that you can find on the internet) but I was very particular about the ingredients I used to cook with and the prepared foods I ate (almost no prepared foods as they almost all have salt in them, iodized salt.)  The biggest problem for me was a lack of grain fiber in my diet while I was on the LID.  I need around twice the normal dietary fiber as most people just to be close to regular.  When I was on the LID, my primary source of grain fiber, high fiber bread, wwas on the forbidden list (all bakery bread has some salt in it, iodized salt.)  Some people have posted here thar the LID was a big problem for them, but I was able to do it with minimal side effects.

My confinment after RAI was much less of a concern than it will be for you.  As I said before, their are no children at home anymore, so I didn't have to worry about that.  But, I was careful to stay away from children for much longer than the guidelines said.  I also stayed away from friends who had small children at home.  After two and a half years I can't remember exactly how long I did this, but I think it was about a month.  Other than that I didn't really vary my schedule all that much.  Hiked as much as I had before, read as much and wasted time on my PC just as much too

Alan

jyinger said:

Like rmickrine, I am new to this.  And although the thread is old, I have already learned a lot by reading the comments.

 

I had my right thyroid removed; they discovered malignant cells.  Two weeks later the removed my left thyroid.  A few cancer spots, but none (thankfully) in the lymph nodes.

 

Now I am looking at RAI and the related DIT.  My questions are about the isloation required after RAI--can I be in the compnay of healthy adults, still staying, say, six feet away?

 

And the diet.  Bread specially baked with no salt is OK?  No yogurt??   Really??  Any other tips?

 

Jon

 

Hi Jon,

I don't remember anything about staying six feet away when I did it.  If I remember correctly, the big thing was not having a person being contaminated by your urine, sweat or saliva.  You don't want anyone ingesting minute quantites of I-131 (RAI) since in minute quantites it can cause thyroid cancer.

The thing with the LID is not staying away from salt, it's staying away from foods with iodine.  You want to starve your body of iodine before you take the RAI.  The theory being your body will be more likely to take up the RAI this way.  You can have as much uniodized salt as you want, grocery stores carry uniodized salt if you look for it.

For both of these questions, ask the nuclear medicine people who will administer your dose of RAI, they will be able to answer better than I can.  They should also give you a list of foods to avoid.  When I did it there were two lists, one list of things not to eat and one list of things to limit how much you eat.

Alan

Baldy said:

RAI & LID

Hi Jon,

I don't remember anything about staying six feet away when I did it.  If I remember correctly, the big thing was not having a person being contaminated by your urine, sweat or saliva.  You don't want anyone ingesting minute quantites of I-131 (RAI) since in minute quantites it can cause thyroid cancer.

The thing with the LID is not staying away from salt, it's staying away from foods with iodine.  You want to starve your body of iodine before you take the RAI.  The theory being your body will be more likely to take up the RAI this way.  You can have as much uniodized salt as you want, grocery stores carry uniodized salt if you look for it.

For both of these questions, ask the nuclear medicine people who will administer your dose of RAI, they will be able to answer better than I can.  They should also give you a list of foods to avoid.  When I did it there were two lists, one list of things not to eat and one list of things to limit how much you eat.

Alan

Hi Alan.

In several of the blogs from post TT patients preparing for RAI, they talk about thyrogen.  Apparently getting thyrogen injections two days before the RAI is an alternative to the usual regimen which has us going completely off our thyroid meds (Sythroid and Cytomel) in the weeks before RAI.  Thus avoiding most of the miserable side effects of going hypothyroid.

This sounds to me like a much less miserable way to get the body readly for RAI.

Comments?

Jon

Baldy said:

Thyrogen

Hi Jon,

It's what I did, though I wasn't given a choice.  It wasn't a problem for me (even with my needle phobia - just two shots in the hip on consecutive days) and from what I've read on here, going hypothyroidal can be a big problem.  If you do have a choice, I would recommend the Thyrogen route.  I don't know, maybe some doctors think going hypothyroidal is more effective.  At the very least you can talk it over with your doctor.

Alan

I did ask my endo (via messages on the kp.org website).  She seemed committed to hypohell.  So I sent one more message, making a very good case, I felt, for thyrogen.  One issue, incidentally, may be that thyrogen injections are VERY expensive and just having the patient wallow in agony for 3 weeks with their meds doesn't cost them anything.  Anyway, complete serendipity:  my endo decided to take some time off, and another DR reviewed my request and approved it.  Yea!!

I guess I'm still doing the LID, right?  And that begins Jan 1.  Then Feb 3 & 4 I get the injections, and Feb 5 the RAI.

Alan:  Thank you SO MUCH for responding to my posts and for your insight.

Jon

Baldy said:

Thyrogen & LID

Jon,

Good for you!

I would think you're still going through LID.  You should be getting instructions for it from either your endo or the nuclear medicine people ... I would say three weeks maybe ... before you're supposed to do the RAI.  If I remember correctly the LID is two weeks.  The thing is it varies, some doctors want two weeks some longer, some shorter.  The extent to which they want you to eliminate Iodine from your diet also varies.  There have been a few posters on this site whose doctors didn't want any LID.

When I did this, I went Googling and found a study which said that there was no direct evidence that the LID effected the efficacy of RAI treatment.  The study's conclusion was further study was needed and a two week LID should be followed.

My common sense says the LID should effect RAI, so I followed my LID as closely as possible.  I even stayed on it for two days after I took my RAI dose since those two days are when your body is taking up the RAI.  After two days, any Iodine you've ingested is almost completely expelled in your urine.  At best you're only going to absorb something like 2 percent of the dose, I think my percent uptake was 1.3 which the nuclear medicine people were happy with.

At the time my endo didn't really seem to care if I followed the LID or not.  I didn't ask, but I'm almost positive he was aware of the study I found, and he may have been thinking that since I was questioning him closely about it, I would follow the LID to the best of my ability.

Alan

Thanks Alan.

I plan to do the LID for at least three weeks before the RAI.  I now check the ingredients on everything.  I already eat unslated nuts--almonds, pecans, Brazil nuts, walnuts, etc., and I love fresh fruits and vegetables.  And I have begun buying other LID items:   Alvardo St Bakery makes bread that has no salt, and none of the dough enhancers that are off limits. Thai Kitchen coconut milk seems ok, and I am now using no salt Fleischmann's margarine.  Iceberg lettuce is ok, but not leafy greens, right?  And 5 oz of chicken or lean red meat.  Oh---Cocoa powder with no additives, but no choloclate.

Hey, this sounds like a good diet anyway.

Jon

Baldy said:

LID

Jon,

There are many different LIDs out there.  I followed the one I was given by the nuclear medicine people and it wasn't the most restrictive that I saw.  I typed it in on another thread, but can't remember which one so it'll probably be easier just to retype it here.

ELIMINATE

   Vitamins with Iodine

   Seafood

   Iodized salt

   Canned soups and sauces

   Chocolate

   Soy Sauce

   Processed meats {ie corned canned preserved in anyway}

   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

"Do your best, this is LOW iodine diet not a NO iodine diet."

Now that I look this list over again, I was stricter than this.  I cut out all prepared (frozen, canned, boxxed) foods except those that were labeled sodium free.  I also cut out all dairy, which was no big deal as I have very little dairy anyway.  I didn't avoid leafy greens.  I also saw one diet that said cut out all grains since depending upon where they were grown, they could also contain iodine, I didn't do that.  My biggest problem was finding fiber, I need alot of fiber just to remain even semi-regular and my usual source is store bought high fiber breads.  I didn't do that because they bake with salt, not much but some.  I pretty much cooked most things as I always did except using non-iodized salt.

Alan

Alan: 

As for bread, the ingredients on the Alvarado St. whole grain bread look consistent with the LID--no salt, no carrageenan, no dough enhancers.  Looks good to me.

But unlike you, I love my dairy:  especially non-fat milk (isn't that better than regular milk??) and yogurt (great source for good bacteria).  I guess they will be my biggest sacrifice for my 3-4 weeks of LID.  I already have stocked up on Coconut milk without any of the dis-allowed adiditives.  That will have to suffice for now.

Again, thanks for your info.

Jon

Baldy said:

Leafy Greens

Hi Jon,

Now that I reread this and think back on it, I think there were some leafy greens I eliminated.  If I remeber correctly, the ones that are known for high iron content are the ones that also have a high iodine content.  So no spinache, kale and things like that, okay to the usual salad greens, lettuce.  I think I may have rationalized the leafy greens by thinking I was doing more than recommended by the strictest diets in other areas so I could be a little lazy about the leafy greens.  I believe I was worried about getting enough veggies and I know I was worried about losing my fiber from my salads since I was already losing my fiber from my bread.

Like my instructions said, "It's a LOW iodine diet, not a NO iodine diet."  Don't go to extremes, you may have adverse health effects.  There have been a few posters who have had trouble following the LID, upset stomaches and the like.

Alan

I found some salt free rice cakes - lovely spread with organic salt free peanut butter (not my favourite, but eatable after a week or so). 

Milk can be a problem, if you do not know what the farmer is feeding the cows. Have they had recent access to a salt lick block? Have they been fed any winter food additives?  I found that doing without milk was the easiest option, even finding water made oatmeal for breakfast instead of milky porridge.

One bonus of LID (especially as I had to do it for 2 months, as the surgeon had left a small amount of thyroid behind, and I could not get my iodine level down!!!!), was I got my weight down. Wonder if I could sell my LID as a weight loss diet???