March 21, 2020

FAQs

ALL THINGS LID

Why is the Low Iodine Diet (LID) necessary?

Thyroid cells are one of few systems in the body that utilize iodine.
Radioactive Iodine (RAI) is a very targeted treatment used for thyroid
cancer patients where iodine is combined with radioactive isotopes.
Patients prepare the body by following the Low Iodine Diet for 7-14 days
prior to treatment and raising their TSH to a high level (through either med
withdrawal or Thyrogen injections). Depleting the iodine levels in the body
causes any existing thyroid tissue/cells to become very, very “hungry” for
iodine! When the patient takes RAI … it is quickly and efficiently absorbed
into those thyroid cells!

I thought LID was a salt-free diet?

The purpose of the Low Iodine Diet is to reduce iodine levels in the body to
prepare for RAI. Salt that contains no added iodine (non-iodized) is SAFE
for LID!! We have identified many brands of non-iodized salt on our
website!

This product is listed as safe on your website, but it contains salt!

Knowing that non-iodized salt is safe for LID, the admins here at LLC have
gone to great lengths to contact manufacturers and verify the type of salt
used in their products. Only products that have been confirmed as
containing LID safe non-iodized salt are listed on our website. Our website
also lists all the letters we have received from these manufacturers
confirming they use non-iodized salt!

Are Oreo brand cookies really LID safe?

YES!! Many people are surprised by this fact – but Oreo cookies are
actually vegan, as they do not contain dairy!! The presence of chocolate
confuses some members – but chocolate without added dairy is not banned!
And because the Oreo manufacturer (Mondelez International) uses LID
safe non-iodized salt – OREOS ARE LID SAFE!! (Please note that a few
seasonal flavors are banned for other ingredients – as always please check
the ingredients label on all packages).

I thought products that contained soy were banned on LID? I am confused!

There are two forms of soy that are SAFE for LID. soy lecithin and soy
(soybean) oil! If either of these ingredients is listed in a product, you can
rest easy knowing they are safe! All other forms of soy, as well as
soybeans themselves, are banned.

Help!! I accidentally ate something banned!!

LID is generally followed for two weeks to allow plenty of time to reduce iodine levels in the body. If you have a slipup in the first week, brush yourself off and be diligent in following LID for the remainder of your time. If you have a slipup within a few days of RAI, we suggest contacting your medical team and letting them know what has occurred. 

Why is your LID different from the one given to me by my doctor?

Doctors and medical teams do not have the time or resources to contact
manufacturers to confirm what type of salt is used in products – but we do!!
And we have the science and thousands of successful RAI treatments &
scans to back up our diet! Whatever LID you choose to follow is completely
up to you and we will never tell you to go against your doctor’s orders. We
do suggest that you make a decision and stick with it throughout your LID.

A manufacturer is listed as safe on your website - does this mean that every product they make is LID safe?

No! The manufacturers listed on our website are verified as using LID safe
non-iodized salt .. but only when the word “salt” is listed in the ingredients.
Some of their products may contain sea salt (which is never safe) or other
banned ingredients! It is up to you to be diligent in checking the ingredients
of a product!

There are no banned ingredients listed on this product, but "sodium" is listed in the nutritional values - is it safe?

Salt and sodium are not the same thing! Sodium can be naturally occurring
in ingredients other than salt. We are only concerned with the ingredient list
of a product!! Nutritional values are not a concern for LID.

Is there an LID-safe cream I can use in my coffee?

This is the #1 question asked in our Facebook group! The answer is yes,
there are LID safe creamers listed on our website. Unfortunately, sea salt
is commonly used in non-dairy products, so our members need to be extra
vigilant in checking ingredients and taking the time to hunt for a safe coffee
creamer!

FINAL PREP FOR RAI

My doctor instructed me to stop my thyroid medication, but I am noticing others are staying on their medication and taking Thyrogen injections?

Every patient needs to do two things to prepare the body for Radioactive
Iodine Treatment (RAI):
1) Deplete the body of iodine through the Low Iodine Diet and
2) Raise their TSH level to a high level
There are two ways to raise TSH. One method is to stop taking your
thyroid medication for several weeks prior to RAI. The second method is to
continue taking your medication and receive two injections of a drug called
Thyrogen. Thyrogen raises your TSH quickly but allows patients to stay on
their thyroid medication thereby avoiding the side effects of med withdrawal.
Thyrogen comes in 2 injections, which are given 24 hours apart starting 48
hours ahead of your dose of RAI.

How will I feel after my Thyrogen injections - can I return to work?

The majority of members feel completely normal after receiving Thyrogen injections and go about their day as usual. Some members may feel tired or have a slight headache after Thyrogen injections. 

How will I feel during withdrawal of my thyroid medications?

This can vary from person to person! But generally speaking after several
weeks without thyroid medication, members can experience any or all of
these common side effects:
~ Tiredness
~ Difficulty thinking clearly
~ Body aches and pains including headache
~ Bloated/fluid retention/weight gain
~ Slow, dull reflexes
~ Nausea and/or constipation

NOTE: In many states & provinces, withdrawing from a medication that is
necessary to your life can make it illegal for you to drive a motorized
vehicle.

My dose of RAI seems much higher (or lower) than other people's - is this normal?

There is no one-size-fits-all dose of RAI! There are many factors, which are taken into account when determining a dose that is correct for you and your individual situation. 

What is the difference between a Tracer Dose and an Ablation Dose of RAI?

Ablation/Treatment doses of RAI (generally 29 – 300+ mci) are given with
the purpose of destroying (ablating) any thyroid tissue/cells that may exist in
the body. Some patients receive more than 1 ablation dose of RAI in their
lifetime.


Tracer/Diagnostic doses of RAI (usually less than 5 mci) are used to
determine how much thyroid tissue exists in the body. Tracers are
sometimes used before a treatment/ablation dose, in order to help
determine the dose of RAI. Tracers are sometimes used as part of a followup/monitoring protocol in conjunction with ultrasound and blood work.

RAI TREATMENT DAY

Will my RAI come in liquid or pill form?

RAI comes in both liquid and pill form and both are the common forms of
administering RAI!

Can I eat the morning of my RAI dose?

This answer needs to come from your medical team! Please contact them
and ask!

Am I radioactive right away?

YES!!! We can’t stress this enough … from the moment you take your dose
of RAI, you are RADIOACTIVE and need to take all the necessary
precautions to keep others safe!

What if I am unable to drive, can my family member drive me home?

Yes, but precautions must be taken! You will need to sit in the opposite
rear seat from the driver and maintain the 6′ bubble throughout the drive.
Sit on a sheet (that you will take into your isolation room after) and wipe
anything you touch inside the vehicle. Go straight home without stopping
anywhere to minimize the exposure to others.

I am so nervous - is this normal?

YES!! After weeks of preparation and reading all the protocols and
precautions about the dangers involved with radioactive iodine treatment, it
is normal to be nervous! We are happy to report that most patients find RAI
day to be very anti-climactic and they feel absolutely normal after taking
their dose!

ISOLATION PROTOCOL

When does isolation begin?

Your isolation protocol begins immediately after taking your dose of RAI!

How can others be harmed by my dose of RAI?

Once you take your dose of RAI – you will emit two forms of radioactivity
that is harmful to others:
1) You are a walking x-ray machine and you have a field of radioactivity that
surrounds your entire body. Anyone coming within 6′ of you is exposed to
radioactivity!
2) All your bodily fluids are radioactive as your body flushes the RAI from
your system (any RAI that was not absorbed by the thyroid cells/tissue). So
anyone coming in contact with your bodily fluids is being exposed to
radioactivity!

Can I isolate in a hotel after receiving my dose?

NO!!!!! We are adamant that members NEVER isolate in hotels. First,
due to the layout of hotels, chances are good that you may be within 6 feet
of a person in an adjoining room. It is also very likely that you will expose
cleaning & hotel staff to radioactivity when cleaning the room or washing
the bedding/laundry. In our FB group, we will remove members who
promote isolating in hotels.

Can I use my electronics (phone, laptop etc.) during isolation?

YES! And please do not cover your electronics in any form of plastic as
they can overheat and be damaged. At the end of your isolation, simply
wipe the equipment down with a non-bleach wipe and then it is safe should
it come into contact with others!

How long will I need to be isolated?

Once a dose of RAI is taken, the thyroid cells immediately begin to absorb
all the radioactive iodine they can hold! The remaining RAI is then flushed
from your body through bodily fluids. So the length of time in isolation
depends on several things:
~ The size of your dose of RAI (the larger the dose, the longer it takes to
flush)
~ Your uptake (the more thyroid cells/tissue you have in your body, the
longer you emit x-ray type radioactivity)
~ How efficiently your body flushes excess RAI from your body


If you do not know your uptake % (many don’t!), we strongly suggest that
members use our conservative isolation chart to determine isolation times!
If in doubt, err on the side of a longer time in isolation as protecting your
family is the most important goal! In addition, you may ask your nuclear
medicine department to give you a Geiger reading (be sure to write down
the unit of measure!) to confirm if you are safe to be around others!

I have my own bedroom & bathroom to use during my ISO, but do I have to stay locked away from everyone?

No!! If you venture out of your ISO room, just take these precautions:
~ keep all living creatures out of your 6′ bubble! Always!
~ protect surfaces from your bare skin: wear socks to protect floors, clothing
to protect furniture and either wear simple cotton gloves or wipe any surface
that you touch with a non-bleach wipe.

Can I go outside during ISO?

YES!!! We encourage our members to go outside!!! You can go for a walk, exercise, 
or simply sit in the sun! Always maintain that 6′ bubble, wipe anything you
touch and enjoy the outdoors!

How much water should I drink?

LOTS!! For the first 24 hours you want to drink enough to urinate every
hour. Fluids are important to flush any RAI that is not absorbed by thyroid
cells/tissue quickly and efficiently from your system!

How do I protect my mattress and pillows from radioactivity?

The best method is to use 2 fitted sheets on your mattress and 2
pillowcases on your pillow. If you are someone who sweats heavily when
you sleep, you can also use a washable mattress cover. Once isolation is
over, wash everything in the machine TWICE along with your clothing,
towels and other bedding. Then your linens are safe and can return to
regular use. We strongly discourage the use of plastics as these can
cause patients to sweat profusely and can be difficult to wash (resulting in
excess contaminated trash).

How do I handle mealtime?

So the #1 rule is that you cannot prepare or serve meals to others during
isolation!! If you live alone, you can prepare meals for yourself. For those
who live with others, your family can serve you a meal. We suggest that
you set aside of full setting of dishes, cutlery and glassware for you to use
during ISO. After you eat, wash it thoroughly with soap and water and set
is aside again for the next meal.

We strongly discourage the use of disposables as this is a big contributor of
contaminated trash and is unnecessary.
Many members keep a supply of drinks and snacks in their ISO room just in
case of hunger!

 

THE HOMESTRETCH: POST-RAI

What will the WBS be like?

The Whole Body Scan (WBS) involves lying down and having a machine
pass over your body to capture images. Some members can find this scan
to be claustrophobic as the machine can pass very close to your face and
remain there for a time. The machines can vary slightly in their design
depending on their age and some models can be more claustrophobic than
others.

How do I prepare for WBS?

The day of your scan:
~ You may be asked to take a laxative 12 hours ahead of your scan
~ Plan to dress warmly as the scan rooms can be chilly!
~ Dress in clothing that is comfortable and that does not contain any metal
(i.e. zippers, snaps etc.). Depending on your facility, you may be asked to
remove your bra if it contains metal and to remove any jewelry.
~ Your medical team will instruct if you are to refrain from eating of if you
are okay to consume a light meal prior to your scan
~ If you struggle with claustrophobia, please speak to your med team in
advance of the scan
~ Many patients bring headphones and listen to music or audiobooks
through the scan as a distraction

TIP: take a bathroom break just before your scan!

When will I get my results of the WBS?

It really depends on your medical team. Many members receive their
results on the spot before they leave the scan room .. while other members
will be scheduled to have an appointment with their medical team to discuss
the results. Please inquire so you know when to expect your results!

The results of the WBS showed activity in my thyroid bed - does this mean I still have cancer?

Not necessarily! RAI treatment and the resulting scan are not able to
differentiate between cancerous and non-cancerous cells. What “lights up”
on the scan are thyroid tissue/cells that have absorbed RAI. Remember that
it is almost impossible for even the best surgeon to remove all thyroid cells,
so the appearance of some cells on your first scan is very common!!

When will I be told that I am cancer-free?

RAI continues to work in the body ablating thyroid cells for 6-12 months
after treatment. Generally patients reach “no evidence of disease” status a
year or two after treatment if all follow-up testing does not reveal any signs
of thyroid tissue/cells.

STILL HAVE QUESTIONS?

Download the PDF below to view more of our frequently asked questions!