Re: My progress and LID questions!

[Guest guest]

The way I understand it, the more starved of iodine you make the thyroid and

psuedo-thyroid tissues, the more they will uptake the iodine and DIE.

That's what we want.

Canned veggies should be salt free, you can add your own iodized salt. Soy

and soy products are not allowed. Believe me, it was hard for me to give up

my white coffee, but I did and drank it black for the duration. I am also a

big cheese eater, no cheese, no dairy, no eggs, no butter. I not only did

LID, I did it the low carb way.

I cooked from scratch, several meals at a time. There is also a list of

processed items that are allowable, I filled in with those. However, I

don't know how many will be available there. Can you get, for instance,

Pomi tomatoes, the ones that come in a box?

As it turned out, my TSH was reluctant to rise, big remnant, so I was on

this diet for several weeks. But I figured I was giving myself the best

chance possible for the RAI to work.

Helen, TT PAP 2/02

RAI, 200 mci, 4/02

Scan 5/02

hPTH

[Guest guest]

Canned foods (come to think of it, many if not most ready-made

meals/foods) are usually not only NOT salt-free, they are often

over-salted. You have to read labels carefully -- and differentiate

between " salt " as an added ingredient, and " sodium " which may be

innate in the food itself.

Re: My progress and LID questions!

>

> Canned veggies should be salt free, you can add your own iodized

salt.

>

[Guest guest]

Dear Emma -

Congratulations on your good news.

Personally, I choose to be as strict as possible while on the LID, because I

want to do anything possible to maximize my RAI uptake (then, if the treatment

doesn't work, I can blame the doctors

:-)

I find that the diet isn't all that difficult once I get started (for some

reason I always find it a little tough to begin, like hopping onto a moving

carousel).

I would avoid commercially prepared foods as much as possible, since it's hard

to be sure precisely what's in them. Health food stores are often a good place

to find salt free basics (like

breads). Milk tends to be extremely high in iodine, and I avoid it totally.

Soy is not a good idea, since it can interfere with the uptake of RAI. Many

people find rice milk or nut milk

(almond, cashew, etc.) to be an acceptable substitute.

As BJ said, sodium content in a food is not necessarily indicative of added

salt. On one hand, though, since my understanding is that no salt is iodized

in the UK that shouldn't be a problem,

it's very possible that what is listed as simply " salt " in the ingredients may,

in fact, be sea salt, which is not a good thing.

I will post separately an index to the listserv archives, so you can read up

some LID info, suggestions and recipes.

Good luck on the diet, and always feel free to write back to us with any

questions.

-

NYC

PS: Helen wrote:

> ... Canned veggies should be salt free, you can add your own iodized salt.

Too much sun on the 4th? LOL! We all know you meant to say " you can add your

own NON IODIZED salt " .

moondanza wrote:

> Hi everyone,

>

> I thought I'd check in and let you all know how I'm getting on. I

> went to see my surgeon a couple of weeks ago and was told that I'd

> had

> a 2cm paplillary carc. nodule, but it hadn't gone to any lymph nodes,

> so good news!

>

> I stopped taking my T3 last week and go for my RAI 16-18 July, I'm

> having a neck scan next wednesday.

>

> This week on Wednesday I started my LID, now this is where I'm

> getting a bit confused. I went to see the RAI doctor last week and

> they go along with the British Thyroid Assoc. guidelines for this

> diet, which don't seem quite as strict as the LID's being followed

> here.

>

> What it says is:

> DO eat fresh meat, veg, pasta, rice etc

> DO NOT EAT artificially coloured red/pink foods inc. anything

> coloured

> with E127. Spices are allowed.

> DO NOT TAKE cough medicine, iodised salt, sea salt

> TRY TO CUT DOWN on dairy produce

> AVOID fish & seafood

> AVOID vit supps

>

> Now I talked this over with my RAI doctor in length and what I've

> been

> told is a small amount of milk in tea & coffee's ok, bread's ok,

> tinned things are ok (ie. Tinned tomatoes, chick peas etc) a small

> amount of spread on toast and even the odd egg's ok! Admittedly I

> haven't eaten any eggs nor any other dairy apart from a splash of

> milk in my tea/coffee. He didn't mention to stop eating everything

> with salt in, but to avoid sea salt & obviously labelled iodised

> salt. I do trust them as alot of ThyCa research has been done here

> plus publications written on the subject.

>

> Being vegetarian I eat alot of vegetables anyway, but often cook with

> tinned tomatoes & may use other things from tins occasionally or

> olives etc from jars and suchlike - which have salt added. I also eat

> a fair amount of soya products, eg. soya mince... now I'm wondering

> if this is ok, I've also thought maybe I should start using soya milk

> in tea/coffee (I'm not good at doing without!)

>

> What I'm getting at I suppose is, how 'strict' should you be, because

> unless you cook literally everything from fresh most things do have

> the odd bit of salt added in. Making soups, salads, cassoroles etc

> aren't a problem as I make all of these anyway, but things like

> adding a stock cube (salt included in it) ... does this really

> matter?

> I'm just wondering a small amount of 'unknown' salt in a product

> really matters or a 'small' amount of milk? And as for Soya products

> eg.tofu etc... is this ok or not?!

>

> I'm just interested in what other people think and how 'strict'

> they've REALLY been! Surely a Low Iodine Diet is about cutting down

> and if that effort's made then isn't that sufficient?

>

> Emma (Newcastle UK)

> TT 16 May 0

>

>

> For more information regarding thyroid cancer visit www.thyca.org. If you do

not wish to belong to this group, you may UNSUBSCRIBE by sending a blank email

to thyca-unsubscribe

>

>

>

[Guest guest]

Emma wrote:

I'm just interested in what other people think and how 'strict'

they've REALLY been! Surely a Low Iodine Diet is about cutting down

and if that effort's made then isn't that sufficient?

Emma,

I met with the Nuclear Medicine Dr for the first time yesterday after my

scan to talk about the phase of treatment. When I told him I was LID, he

said: " Who told you to do that? I don't preach that diet because many of

my patients have told me it is too hard and it doesn't have that much

benefit unless you are doing really high levels of RAI. " (by which he meant

400 mcr.) " But since you have already been on it so long, you might as well

stay on it until after your treatment dose. "

My husband and I talked about it after and said that if there is a chance

that it would help, why not do it? Having said that, though, I did go back

to the tablespoon of milk in my morning tea because I was miserable without

it. But LID has gotten easier as I have gotten more hypo because I am too

queasy to want to eat much, anyway.

Since it is not possible to get completely iodine-free in a diet, it does

seem like there is a reasonable spectrum from " avoid seafood and iodine

pills " to the strict Thyca web site version. What my doctor seemed to be

saying was that quality of life is a legitimate factor to consider.

I guess that I am glad to have the facts and to be in control of my

treatment enough to make my choices.

Paige

[Guest guest]

When I was doing the LID, I craved all the things I couldn't eat. I

REALLY craved them. But honestly, it's NOT that bad. There are

lots of things you CAN have, and many of them are very, very easy to

do. 's posted a huge list of recipes.

And it's only for TWO WEEKS! It blows my mind to think that people

can't do without certain foods for two weeks. My quality of life

long term means doing everything I possibly can do to fight this

cancer. Is it really such a sacrifice to not have milk in coffee for a

few weeks? Or to just not have coffee for 2 weeks. Trust me, you'll

REALLY enjoy all the things you did without when the LID's over.

Cheers,

Alisa

2/15/2002: Nodule found during bad sore throat

2/27/2002: FNA - suspicious for pap

3/4/2002: Hysterectomy/oopherectomy-possible ovarian cancer - BENIGN!!

4/9/2002: TT - Stage 2 pap encapsuled in 2.5 x 2 x 1.6 cm nodule,

Hashimotos discovered

5/28/2002: TBS (2 mCi dose on 5/24) and 100 mCi RAI

6/6/2002: TBS - No sign of mets

Currently on .125mcg Levoxyl

Age: 48 Location: near Seattle WA

Please feel free to email me privately anytime

> <snip> the Nuclear Medicine Dr said: <snip>I don't preach that diet

> because many of my patients have told me it is too hard and it

> doesn't have that much benefit unless you are doing really high

> levels of RAI. " (by which he meant 400 mcr.) <snip> What my doctor

> What my doctor seemed seemed to be saying was that quality of life

> is a legitimate factor to consider.

> Paige

[Guest guest]

Hi Emma,

I try to stick to the diet strictly. It's only for two or three weeks so

it's really not too difficult if you think about it. I usually drink

coffee with a little milk so leaving out the milk is pretty bad. I drink a

little less during this period since I must have my coffee (the headaches

are ferocious). To me, the most bothersome part is not being able to go

out to eat or picking up a snack. Cooking LID isn't too tough, I can make

spaghetti sauce from no salt added tomato sauce and ground beef. Stews and

soups with lots of fresh vegetables and fresh beef or chicken. Since

there's just me, a pot of sauce and a pot of soup or stew will carry me

right through the entire LID period.

From the stories on this list, the importance of the LID is never known.

However, you know your goal is to get rid of cancer cells as quickly as

possible and LID helps. All I know is that Dr. Ain endorses the diet on

the thyca.org site and he specializes in de-differentiated thyroid cancer.

Since I don't want to have to be a subject of his research, I think

following his advice is wise.

Betty

mailto:bettyy@...

TT 7/00

RAI 9/00

At 3:39 PM +0000 7/5/2002, moondanza wrote:

>

>I'm just interested in what other people think and how 'strict'

>they've REALLY been! Surely a Low Iodine Diet is about cutting down

>and if that effort's made then isn't that sufficient?

>

>Emma (Newcastle UK)

>TT 16 May 0

>

[Guest guest]

Hi again!

I appreciate everything everyone has to say here.

I feel maybe in some cases I've been mis-interepreted. Of course I

want to follow the LID and I am.... but in some 'eyes' only to an

extent, that is what I'm questioning...

Being vegetarian anyway I cook mostly fresh products, using only

tinned tomatoes etc to make a sauce. The only things I've 'slackened'

on are: a bit of milk in my tea/coffee, plus I've eaten pitta breads

(which list NO 'no-no' ingredients!) I'm also under the impression

that most salt in the UK isn't iodised anyway.

Soups, falafals, hummus, etc aren't a problem as that's what I eat &

make anyway. I'm just curious to find out how much iodine is taken in

in the body each day, and how much of a difference a (for eg.) dash of

milk will make?!

Believe me, I am being cautious of what I'm eating and am reading

labels etc! I'm also thinking about it all the time, otherwise I

wouldn't be here writing this!

Emma

[Guest guest]

Hi Emma,

It sounds like you are following a great low iodine

diet - and as someone on this very list stressed to me

when I was panicked about my own LID " mishaps " it's a

LOW iodine diet not a NO iodine diet.

Granted I am not a specialist in this field by any

means, just a mere thycan, but I personally feel that

a dash of milk in morning coffee isn't going to do all

that much harm or sway the results of a scan

adversely.

We take in A LOT of iodine normally because it's in

many things we eat everyday without even realizing it.

Going on the LID diminishes this amount markedly. I

had to do the LID for one month per docs orders. I

followed it strictly, with the exception of enjoying a

little saltless butter from time to time with my air

popped popcorn. My endo had me do a 24 iodine test to

see how much was in my body at the very end of my LID.

Moral of the story - my iodine level was very low and

very RAI acceptable - a little butter and all. If I

ever do the LID again, which I was informed by my endo

I would have to next year, I am definitely doing it

the same way because I know from my own personal

experience that a small amount of something that may

or may not have any significant amounts of iodine in

it at all is not going to affect my scan or treatment.

Best of luck to you as you finish up your LID.

Pattie

=====

Dx Familial Pap Thyca, Hashimoto's Thyroiditis - 11/01

TT - 12/20/01

RAI 150 mCi - 2/12/02

__________________________________________________

[Guest guest]

Emma

I recognise those words! I wrote them (including the capitals, and the DO

EAT, DON'T EAT, AVOID etc) when I wrote our LID booklet in the early 1980's.

Things have moved on, so I should comment on them.

Firstly, UK salt is NOT iodised (we spell it properly over here! LOL) so much

of the advice based on possible use of iodised salt in commercial foods is

not appropriate in the UK.

Secondly, I have a much better understanding of the mechanics of iodine

metabolism than I did when I wrote that advice. I now consider anything over

2 weeks to be unnecessary and unfair, I also stress now that the last few

days before the RAI are the most important, so your LID must tighten, not

slacken, as time goes on.

In the UK, erythrosine (the pink in cocktail cherries) is known as E127, in

the US it is known as Red#3. It now appears in dried strawberries in various

breakfast cereals.

Most people in the UK get most of their iodine from dairy and eggs. All

seafood is high. Eating them, especially in the last few days before RAI, is

like a reducing diet that allows a couple of cream buns and a few chocolated

avery day. Don't do it!

Soya is off-limits, but it's outside my area of understanding.

I've copied a little of an updated bit of my booklet below your letter.

Ian

> This week on Wednesday I started my LID, now this is where I'm

> getting a bit confused. I went to see the RAI doctor last week and

> they go along with the British Thyroid Assoc. guidelines for this

> diet, which don't seem quite as strict as the LID's being followed

> here.

What it says is:

DO eat fresh meat, veg, pasta, rice etc

DO NOT EAT artificially coloured red/pink foods inc. anything

coloured

with E127. Spices are allowed.

DO NOT TAKE cough medicine, iodised salt, sea salt

TRY TO CUT DOWN on dairy produce

AVOID fish & seafood

AVOID vit supps

Now I talked this over with my RAI doctor in length and what I've

been

told is a small amount of milk in tea & coffee's ok, bread's ok,

tinned things are ok (ie. Tinned tomatoes, chick peas etc) a small

amount of spread on toast and even the odd egg's ok! Admittedly I

haven't eaten any eggs nor any other dairy apart from a splash of

milk in my tea/coffee. He didn't mention to stop eating everything

with salt in, but to avoid sea salt & obviously labelled iodised

salt. I do trust them as alot of ThyCa research has been done here

plus publications written on the subject.

Being vegetarian I eat alot of vegetables anyway, but often cook with

tinned tomatoes & may use other things from tins occasionally or

olives etc from jars and suchlike - which have salt added. I also eat

a fair amount of soya products, eg. soya mince... now I'm wondering

if this is ok, I've also thought maybe I should start using soya milk

in tea/coffee (I'm not good at doing without!)

What I'm getting at I suppose is, how 'strict' should you be, because

unless you cook literally everything from fresh most things do have

the odd bit of salt added in. Making soups, salads, cassoroles etc

aren't a problem as I make all of these anyway, but things like

adding a stock cube (salt included in it) ... does this really

matter?

I'm just wondering a small amount of 'unknown' salt in a product

really matters or a 'small' amount of milk? And as for Soya products

eg.tofu etc... is this ok or not?!

I'm just interested in what other people think and how 'strict'

they've REALLY been! Surely a Low Iodine Diet is about cutting down

and if that effort's made then isn't that sufficient?

Emma (Newcastle UK)

TT 16 May 0

=====================================================

What may I eat?

A diet which is rich in iodine can reduce the

effectiveness of the treatment.

For three weeks before the treatment:

DO EAT: Foods such as fresh meat, fresh

vegetables, salads, fresh fruit, pasta and

rice, oils, herbs and spices.

UK: Table salt is OK.

Many countries: Non-iodised salt only.

US & Canada: Baked products made from

Unbleached flour only.

These are all low in iodine.

CUT DOWN AS MUCH AS POSSIBLE ON: Dairy produce

such as eggs, cheese, milk and milk products,

milk chocolate.

==========================================

Ian Adam

Radiation Safety Officer

The Institute of Cancer Research

Cotswold Road

Sutton

Surrey

SM2 5NG

Tel: 020 8722 4250

Fax: 020 8722 4300

EMail: iana@...

[Guest guest]

Wow I wasn't expecting that, the source himself!

Thanks for the update anyway, I'm coping ok with the diet and go in

next week for my treatment so a few days before them will cut out my

little bit of milk in tea! (I only have 1 cup a day anyway, I'll drink

herbal instead)

Anyway I appreciated your clarification on UK salt & foods, thanks!

Emma

(Newcastle UK)

TT 16 May 02