18 December, 2007

Low iodine confusion

Even though I am drawing near to the end of my current cycle of the low iodine diet, I have still been looking into the specifics more and more closely over recent days. This is especially after receiving a print-out from my doctor's office yesterday (I had been instructed over the phone to begin the LID, thus never received it before) which brought up many questions for me.

You see, every publication I have found regarding the low iodine diet disagrees on some points... usually several. In general, they agree on most things. I have found some almost disturbing discrepancies, however. For instance, every guideline I have seen so far says no soy products. Well, almost. According to Dr. Kenneth Ain, in The Low Iodine Cookbook (Norene Gilletz; Your Health Press, 2005)
Soy lecithin is extracted from soy oil, rather than the protein parts, and has just trace amounts of soy proteins (only enough to bother people with soy allergies). Soy oil, in reasonable amounts (usually as part of a vegetable oil mixture or a minor ingredient) won’t add any discernible iodine to the diet and is not goitrogenic. There is no reason to think that soy lecithin is in any way unsafe for the LID.
Okay, good to know. SOME soy products are safe. Then I receive these guidelines from my doctor's office yesterday, and there is NO mention of soy at all. Not a single word of it.

Another point of confusion is with fruits. Yes, fruits. According to the ThyCa LID guidelines, there are no issues with fruits, aside from maraschino cherries and rhubarb. They make for wonderful snack foods and there are no problems with any fruits aside from the two mentioned. I have been going by this notion for the duration of my diet so far... only to find that this may be grossly wrong. The banana & strawberry smoothies I have been making for breakfast may in fact be quite high in iodine. The guidelines I received from my doctor yesterday states:
Allowed fruits and fruit juices: Apple (fresh only), apple juice, apricots (fresh only), avocado, berries, cherries (fresh only), cranberries, figs (fresh only), grapefruit, grape juice, grapes, mangos, lemon juice, melons, nectarines, oranges, orange juice, peaches (fresh only), pineapple (canned), pineapple juice, plums, tangerines
Disallowed fruits: Bananas, dried fruit (raisins), applesauce, fresh pineapple, canned peaches or any fruit not listed in the foods allowed.
Now I have found, through my own research today, thanks to The World's Healthiest Foods Website, that strawberries are in fact one of the most iodine rich foods in the world. This source, at least, provides solid numbers. This I can work with. I'm tired of all of these lists of do's and don'ts with no numbers or resources to back them up. I need to start finding solid numbers.

I could continue on and on with the discrepancies between the diets, but what's the point? Nobody really agrees. For my own sanity, however, I need a single definitive source. I need to know the iodine content of different foods. I need to know what foods I can and cannot eat while on this diet. I was astounded yesterday when I was reprimanded for drinking orange juice on the diet, by a lab technician who was assisting with my case! Not even doctor's staff knows the specifics of the diet! This should go to show just how contended the diet really is!

I think I have some work ahead of me...

22 comments:

Jeremy Steven said...

Exactly! I have been following THYCA.org's guidelines as well, only to find the same shocking data that strawberries are high in iodine. What gives?!? Do these people really do research before they give advice? You're supposed to stay below 50 mcg/day, but a cup of strawberries has 12? That's a lot more than the 5 mcg in a typical serving of grain, which is supposed to be a limited consumption food.

Now I see your doctor gave you a list of acceptable fruits. My breakfast every day has consisted of dried apricots, raisins, bananas, and apple sauce in my oatmeal, all the disallowed stuff.

I had a higher than normal thyroglobulin count after my initial radiation treatment, and my doctor suggested I miffed the diet, despite following his rec to follow the THYCA.org diet. I followed that diet religiously, and this time I was even more careful. Now this! First thing in the morning I'm demanding an iodine blood count test.

I completely agree a source listing Iodine in every food type is needed. Unfortunately, the USDA nutrient DB doesn't include iodine even though it includes just about everything else.

Frustrating. I don't want to have to get another 100 or 150 MC of I-131 again.

Tarken said...

Hi Jeremy,

I'm glad to see that I'm not alone in my frustration. I would love to see what sources you have found in your research for this diet. I am set to go back on the diet in May so that I can receive my 6-month checkup in June, and I know that I am going to end up delving into the subject even more in-depth than before. This time I intend to start recording my findings and hopefully publishing them. Any assistance you may be able to provide in regards to information gathering would be invaluable.

Thank you for reading!

Anonymous said...

It really is insanity trying to work with the limited information that you get from the doctor's office. It's like piecing a puzzle. Someone really does need to put together a more comprehensive and specific guideline for people who have to work this diet. We are stressed enough and the pressure of dieting correctly so that the test results will be accurate is unneccessary. If provided with accurate and specific information to follow we would not have to wonder all the time if we were meeting the testing requirements.
I totally sympathize with you.
Eating very little I suppose is helpful but very difficult for two weeks. Hope you feeling fine and doing good.
Lisa

Anonymous said...

Both my endo and my nuke doc and techs tell me that I need only avoid seaweed and seafood. Really! They contend that patients have so many problems following the LID that it's not worth doing.

Prior to my first ablation (100mci I-131, August '06), I decided that to enhance my chances of avoiding a second (or more) ablation I would do the LID.

I researched, studied, called manufacturers (which I no longer do, since info provided is not necessarily accurate due to outsourced ingredients, etc.). I worked hard to be as iodine free as possible.

I met with my endo prior to being given the Thyrogen shots the Monday prior to my ablation dose and mentioned I'd read that some patients have had some luck with lessening salivary gland damage by using, iirc, selenium. My endo told me to take a multi-vitamin, and named a wellknown brandname and type.

I went directly to the drugstore, bought the vitamin he mentioned, took two then, and two with supper, and two before bedtime. Same thing the next day.

It wasn't until that evening I read the ingredient list closely--and saw all that IODINE! OMG. I was actually shaking. And I was angry. And very scared.

I couldn't believe my endo had told me to take this--and I was really scared I'd messed up my therapy. I called my nuke oncologist the next morning, told him what had happened, and asked if I should postpone the abaltion. He said no, to go ahead.

No one mentioned testing my blood for iodine levels, and I didn't know to ask. Dammit.

Well, after my second WBS last year, for which I prepared with the LID again, the nuke oncologist told me that my uptake of the test RAI (measured with a wand) showed that my thyroid cells were barely avid. The uptake was only slightly above the cutoff for being able to use RAI-131 to abalate. They did, however, go ahead with the WBS, which showed some remnants in the thyroid bed. And my Tg was measured at 7.7.

The nuke doc told me I would not be treatable at his hospital any longer and would have to have dosimetry treatment. I swear he looked gleeful telling me this. My endo said we would watch carefully (MRI's showed nothing anywhere, even the thyroid bed; follow-up ultrasound showed nothing, where the April one prior to the August WBS had also showed something), to see if dosimetry could be avoided.

I am on LID right now (found this site doing research about strawberries!), preparing for this year's WBS.

It's been a terrible year, not knowing what those little thyroid cells are doing or where.... I try to forget about it, but it's always there in that back of my mind. I can't wait for this WBS's results.

I asked if the 5mci given for the WBS could contribute to killing off some remnant thyroid cells, and was told it was impossible. So, where'd they go??? Of course, the RAI ablation amount can continue killing cells for up to a year....

I firmly believe in the LID--and it's about the only thing we have any real control over. Since I'm in an HMO, I don't even have control over which endos I can see.

And at the rates I pay per month I cannot afford to pay out of pocket. My retirement savings are going to pay the mega salaries and perks of Aetna's execs.

I was hoping there would be a definitive answer about the strawberries, but, hey, what else is new about dealing with thyca? It's not the most highly studied of the cancers--as of yet. If the effects of fire retardant chemicals as bad as my vet tells me (sharp increase in thyroid disease in cats has a temporal relationship to the beginning of use of fire retardants in carpets and kids' jammies, per studies; causal not shown as of yet), there may be more interest in such research.

~~~permanecklace

Tarken said...

Thank you for your comments, permanecklace... and I certainly hope that you return with some contact information. I would be very interested to hear what all information you collected in your research and perhaps share notes.

As to strawberries, you are correct, there does seem to be no definitive answer, aside from at the link I provided in this article. I think what might be causing so much trouble is soil. It may just be personal theory, or I may have read it somewhere, I'm not entirely certain, but I think that soil iodine content may have some effect on foods. However, I have always managed to take my iodine levels FAR below the required thus far.

Aside from the Low Iodine Cookbook on ThyCa's website (which I have found to contain a couple of erroneous recipes) I have started a collection of my own recipes and have been posting some of them here on the site. Feel free to use them, re-post them, contribute more... I plan, in time, to start a site where users can more easily contribute their experiences, recipes, whatever they would like.

Best of luck in your treatments! If you do happen, by some odd coincidence, to be in the Phoenix AZ area you should go see Dr. Daniel Duick at Endocrinology Associates. He accepts Aetna and is one of the country's top endos from what I've seen in my research. He's done a top notch job for me and for friends of mine as well.

Mariposadvm said...

I have officially joined the I'm so frustrated on this stupid diet. This is my first time through, and I'm week 3. Luckily I found this website for the current information you have posted on fruits. The funny part of all of this is that I am a veterinarian who works mostly with nutrition cases pertaining to pet diseases. I am considered the diet doctor in my area. My doctor didn't even provide any information. She just said stay away from Iodine, and the radiology tech said no soy or my staple of Sushi. So being who I am, I researched my new dietary restrictions and found out I can't eat anything I normally eat. Being lactose intolerant, I used soy as a staple. I come to find out that all other nut milks in our area also add Sea Salt to make things interesting. After the 4th store, I found a salt free Oat Bran milk at Henrys. I consider myself a pretty decent cook, and have come up with some recipes, but I am sticking to home made pasta sauce, spaghetti squash, unsalted matza, unsalted cashew butter and occasional protein because all of the chicken/meat in our area is brined before being shipped to the grocery stores. Organic meat/chicken unbrined is still hard to find. Fresh n Easy has guaranteed me that they don't add any, so just found some protein. The irony in this is that had I not done my own homework, I would have lit up like a Christmas tree on my scan. This sucks, and sorry for venting, but doctors that recommend this should all try this out first.

Mariposadvm said...

I have officially joined the I'm so frustrated on this stupid diet. This is my first time through, and I'm week 3. Luckily I found this website for the current information you have posted on fruits. The funny part of all of this is that I am a veterinarian who works mostly with nutrition cases pertaining to pet diseases. I am considered the diet doctor in my area. My doctor didn't even provide any information. She just said stay away from Iodine, and the radiology tech said no soy or my staple of Sushi. So being who I am, I researched my new dietary restrictions and found out I can't eat anything I normally eat. Being lactose intolerant, I used soy as a staple. I come to find out that all other nut milks in our area also add Sea Salt to make things interesting. After the 4th store, I found a salt free Oat Bran milk at Henrys. I consider myself a pretty decent cook, and have come up with some recipes, but I am sticking to home made pasta sauce, spaghetti squash, unsalted matza, unsalted cashew butter and occasional protein because all of the chicken/meat in our area is brined before being shipped to the grocery stores. Organic meat/chicken unbrined is still hard to find. Fresh n Easy has guaranteed me that they don't add any, so just found some protein. The irony in this is that had I not done my own homework, I would have lit up like a Christmas tree on my scan. This sucks, and sorry for venting, but doctors that recommend this should all try this out first.

mikepeiman said...

Hey all. I'm not terribly informed on this issue or this diet, but was doing some casual research as my mother has been hypothyroid my whole life (thyroid medically removed in her youth). As regards iodine in the diet, I see there's some controversy and confusion over what's allowed and what's not - just wanted to point out something I noticed in my research, that iodine concentrations in food have much to do with where they are grown. Specifically, most foods grown continentally inland are low in iodine, and those grown closer to the oceans higher. There may not be a way to measure your diet simply by the types of food you eat; it may be much to do with where they are grown. Food for thought, I hope it helps you in your task.

nickcosta said...

I've been reading all the posts about the problems with the Low Iodine Diets. After I had my second radioiodine ablation, I discovered that by following the thycal diet, I was eating strawberries, and worse yet, spinach. I'm wondering how much this compromised my low dose scan and my high dose (100 millicuries) therapy. I'm particularly interested in how my eating spinach and strawberries may have affected things and why these foods would be considered OK on a Low Iodine Diet.

I'd appreciate to hear any more information anyone may have on the LID and this whole issue in general....Thanks in advance.

nickcosta said...

I've been reading all the posts about the problems with the Low Iodine Diets. After I had my second radioiodine ablation, I discovered that by following the thycal diet, I was eating strawberries, and worse yet, spinach. I'm wondering how much this compromised my low dose scan and my high dose (100 millicuries) therapy. I'm particularly interested in how my eating spinach and strawberries may have affected things and why these foods would be considered OK on a Low Iodine Diet.

I'd appreciate to hear any more information anyone may have on the LID and this whole issue in general....Thanks in advance.

Anonymous said...

My wife is nearing the end of week 2 of her Low Iodine Diet, and we've never been through a more frustrating experience. There are multiple web sites that provide guidelines for the LID, but there seems to be no real consensus on what is "safe" and what is not. Furthermore, I've researched whether the LID has any positive effect on the long-term outcome for the patient, and surprisingly there is NO consensus in the medical community whether there is any long-term benefit at all. Can someone PLEASE apply some scientific methods to this issue? There are a lot of frustrated patients who want to help to improve their outcomes and do not have the tools to do so.

Anonymous said...

FYI: Mangoes are high in iodine.

Anonymous said...

I noticed that this blog was posted almost four years ago. Thank you for leaving this up to help others. I am on my 13th day of the low-iodine diet and am very frustrated. I have lost 4 pounds because I'm not sure what I can eat because I have read so much conflicting information. Up until today, I had been eating bananas almost daily. The diet sheet that I was given at the doctor's office did not list bananas as being off limits. Then today I learned that bananas are high in iodine. I really think that doctors and hospitals should have to give every patient a detailed list of exactly what they can and can not eat with the exact amounts of iodine listed for all foods on that list.

Anonymous said...

I-131 following surgery, no one told me I needed to avoid Iodine. .05% thryroid remaining.

Had 100 miC ablation. Again, no one mentioned LID.

One year later, had I-131 uptake. Told to follow LID. Pointed to ThyCa. They said dried fruits ok, so I had them. I had bottled juice. OK or no? What the heck is canned juice? Also, had cola. Some say yes some say no. No idea. They didn't mention lots of stuff.

Another year later, preparing to go on LID for I-131 uptake again. No clue what I can eat. Forced to go to a different source for scan due to Thyrogen shortage. They were willing to schedule immediately, as they don't believe in LID. I kept original dates and am going to try to follow LID but it's like following a game where the rules change every five minutes.

I could scream. Bad enough there are few things to eat on this diet, but then they change what they are? Unreal.

weight loss said...

many people decide to get in shape a couple of weeks before when it is usually too late to do anything. Really you just need to follow a healthy eating plan and exercise on a regular basis. Are you doing any exercise at the moment? Or have you done some that you enjoyed in the past? And what is your diet like at the moment?I think Losing weight requires careful planning, motivation, and actual implementation of the plan.

thyroid cancer said...

Hello All- Be sure to check your veggies. Our garden was booming and I was so excited for Swiss Chard until I read that like Spinach it is high in Iodine.

http://www.ehow.com/list_6910044_foods-high-iodine-content.html

Strawberries too. Bummer.

Anonymous said...

Wow... it's incredible to me that it's 6 years later, and in that time, NOTHING has improved in terms of clarifying the specifics of iodine content in foods. INCREDIBLE. I hate to sound arrogant, but you know... I worked i the diabetes field for years, and for diabetics... it couldn't be clearer. Foods are marked, content is clear, it's a no-brainer. With LID, it's IMPOSSIBLE.

First of all, let me just underscore the knowns: YES - STRAWBERRIES and, believe it or not, CRANBERRIES are the fruits highest in iodine.

And YES...be careful with nut milks. I've been doing Almond Milk for 15 yrs; had to switch to HEMP milk for LID - no sea salt. ALSO...check the ingredient list for CARAGEENAN. This has roots in kelp, so iodine content.

AS FOR BREADS: Believe it or not.. I had to go to WALMART to find bread BAKED ON THE PREMISES...with NO iodized salt. The baker went to great lengths to explain that WalMart uses KOSHER SALT in its dough, which is non-iodized. (This was after going to Wegman's and Whole Foods who couldn't clarify whether they used iodized salt in their bread products.) Though, there are still some baked goods that use iodine as a dough conditioner.

I have always made my own pasta sauce, and I do alot of baking. But, I won't bake bread...huge time issue and, well frankly, I hate it.

Another interesting side note: Going into my second thy surgery and subsequent RAI..and my doc suggested I start the LID again NOW, even tho I won't be doing RAI until late August/early Sept. SOOOO.. I'm also wondering whether the original 2-week LID diet is actually sufficient. If for no other reason, a longer time period...tho, in some cases torture...allows you to make one or two boo boos and get it right in sufficient time before RAI.

Just a thought.

Finally, in regards to iodine content in general... we, as a society, have analyzed foods, vitamins, environmental exposure, chemicals TO DEATH in this country. WHY CAN'T WE HAVE ONE WEBSITE THAT LISTS SIMPLE IODINE CONTENT OF FOODS!?!?!?!?!?!?!?!?!?!?


This is tortuous, and an exercise in futility to assume that patients are going to be successful in staying on a diet that DOESN"T MAKE CLEAR WHAT THE DIET IS!?!?!?

(p.s. I thought is was a riot that the text it just asked me to type before posting this was: bovine feed!!) lolol (iodine anyone?)

Anonymous said...

p.s. "Weight Loss"...are you clear about the subject area you wandered into? It's NOT ABOUT WEIGHT LOSS AND EXERCISE...it's about THYROID CANCER.... HELLOOOOOOOOO?

Anonymous said...

PART 1
It's July 13, 2014 as I write this.
It's a lot so I'll break it up into separate posts.

My PTC Story
In July 2012 after a night of drinking and smoking cigars, I noticed a lump in the lower right side of my neck, the next morning.

Jumped on Google to see what it could be."Supraclavicular node. Right side."

Google said it was most likely lung cancer. Yikes!
Google can be a d*ck sometimes.

Okay, that freaked me out but I'd never been a consistent smoker - just socially, so I figured that was not it.

So, I went to a real doctor.
It took awhile but they officially diagnosed it as a thyroid nodule. Said no worries, they are common and rarely malignant. Awesome.

But I continued to Google.
For my demographic, a guy in mid thirties (36 then), there was a higher risk of it being cancer. Crap.

Anonymous said...

PART 2
Next up I did the ultrasound and all that stuff and then waited for the test results. It takes forever when you're worried, to get any damn information.

I had done research and was "prepared" (ha yeah right) for the diagnosis but after the reality set in, it was terrifying. August 31, 2012 , the test results showed it was a 4.2cm (walnut sized) tumor and oh yes, it had PTC. Tall cell (more aggressive) variant. So I was convinced I was going to die and not see my kids grow up. Yeah. Full panic.

Online in the "support" groups, there were nothing but horror stories. No good news. So I stopped reading.

It you are reading this and are in similar situation right now, let me tell you - it's going to get better. You are going to be fine. You're diagnosis is not the worst that has ever been seen. Coincidentally, a woman I worked with had the same thing I did, but much more extensive. Today, 4 years later she's fine.

The reason you read so few "good" result stories online is because we're all out living life again! You will too. Really.

Sometimes there's a weird superstitiousness... We don't want to talk about it.

I never believed it would be okay and yet, two years later, it's true. Life didn't move on without you. You're still a part of it. I know this feels like a bad dream. It'll pass. Hang in there.

Anonymous said...

PART 3
Today, things are awesome. Thyroid cancer motivated me to get healthier and I've learned how to bake more.

In 2014 I'm working with a dietician through work to see if there are any reliable resources for determining iodine content in food. She went as far as contacting the FDA who despite having major chemical breakdowns of many foods, still couldn't provide specific info about iodine content. They did tell her that they would be conducting a more comprehensive iodine study, probably in 2015 but for now, this is a mess.

I was advised by my nuke med people to check out the Thyca LID. It's okay but yeah some contradictions. They also told me it was important to do the LID for 4 weeks.

I was already putting myself on it early to make any chance more effective. It sucked. I lived on semolina pasta, stewed fresh tomatoes and boiled chicken.

This is the second time I'm on the LID - not because something went wrong - it's normal procedure to do 2 year follow up.

Anonymous said...

PART 4
Now, I'm more prepared and have been making LID bread. It's a godsend. I make the dough in a bread machine (you can knead by hand but it takes awhile).
When the dough is done I transfer it to a pan and bake in the oven.

I did this the first time on the LID too and my scans and treatment were not adversely affected.

****************
LID Bread (there are other recipes too)

• 2 cups of hot water

• 2 tablespoons of vegetable oil

• 1.5 teaspoons of salt (use less if it's too salty)

• 1/3 of a cup of egg whites ( it's okay! I was spooked by anything "egg" but it's fine to use these.)

• 1.5 teaspoons of active yeast (I use bread machine yeast)

• Mix all of these in a bread machine. Takes about an hour.
• 30 minutes to let the dough rise, then
• 30 minutes baking in a traditional oven at 350F

- The dough will be sticky.
- Add a little regular all purpose flour to keep it manageable and to prevent it from sticking to your hands and everything else.

****************
Make toast (no butter, sorry) or No-salt organic peanut butter and honey sandwiches. It's bread! It makes you feel human.

Remember, it's a stressful and terrifying experience but you will survive!

You will be fine. Trust, there are literally thousands of us out here who have gone through it. You're not alone. It's going to be okay.