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Is the low iodine diet necessary for radioactive iodine treatment?????????? One Doctor says no.........

bribeauty25's picture
bribeauty25
Posts: 10
Joined: Jan 2010

I am having my radioactive iodine treatment next week and the nuclear medicine doctor tells me to not worry about a low iodine diet, and to stop reading things on the internet. This makes me nervous because anywhere I have read about this treatment says to follow the low iodine diet....
Maybe there are different types of this treatment? I am scared this treatment won't work or something! Advice please!

BellsAngel69
Posts: 102
Joined: Dec 2009

You are supposed to be on the low-iodine diet for at least two weeks before RAI. The whole point is that thyroid cells absorb iodine. If you starve your body of it, any residual thyroid cells will absorb the radioactive iodine and die off.

What kind of a doctor do you have? Don't worry? You need to get an endocrinologist that has knowledge of treating thyroid cancer and fast!

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

I just had RAI 2 weeks ago, and I too was not on a low-iodine diet. I live outside the US, but they just don't place alot of importance on the diet. I have an excellent endocrinologist, has published alot about thyroid cancer........good isotope department, so don't know what to tell you.

I sort of independently decided to cut out fish, knowing that it contains the highest % of most foods.

Good luck

bribeauty25's picture
bribeauty25
Posts: 10
Joined: Jan 2010

Well thank you. It is good to know someone else wasn't told to do the diet. I havent' had any seafood for awhile so I feel a little better. I think I am most uneasy by the way this doctor has spoken to me. He told me it was dangerous to look online for info. why because then I can question you?????????? ugh little frustrated here! but it starts tomorrow and I will try and be positive. With being hypo I feel like it is hard to keep my emotions in check!
Thanks for your post!

bribeauty25's picture
bribeauty25
Posts: 10
Joined: Jan 2010

Thats the thing I dont have an endocrinologist yet.....my surgeon said he would set me up with one after my last check up with him, but I really feel like I need him now....

jones512
Posts: 2
Joined: Jan 2010

I would not use a physician who recommends a patient stop using the internet to obtain more information about their own health. While you may have to shift through some inaccurate information now and then, I am finding a wealth of scientific facts to aid me in MY decisions about MY LIFE! I feel so lucky...my fact searching has resulted in INCREASED confidence in both my surgeon and my endocrinologist. Posting here was a good start. Please don't stop being your own advocate!

A good doctor should encourage you to educate yourself, and should welcome questions that using the internet may bring up as a way to open up communication and demonstrate their knowledge. Sounds like this doctor may be thinking it is a challenge of his competency, not a way to help you see the big picture.

Question everything! Write questions down and document your physician's answers. If the answers don't make sense, or if your concerns are dismissed, get a new doctor!

RAI treatment has been around for decades. Research it. Google is your new best friend:-). Check out the results of studies and review standardized thyroid cancer/RAI treatment guidelines. Your health care should not be dictated, but rather explained in a way that allows you to make fully informed decisions.

Joan
(stepping down from her soapbox now)

bribeauty25's picture
bribeauty25
Posts: 10
Joined: Jan 2010

You make some excellent points and I agree with you. This doctor seems a little insensitive because he doesn't feel like I need a lot of info. This is the nuclear med doc who will be giving my treatment so I won't have to deal with him after this I guess. He isn't even giving me a consult until I start the treatment. I have only spoken with him on the phone and it has been very quick. And my surgeon suggested I look online for info because the papers he had to hand out wern't very informative. I really hate it when doctors act you should just trust them without explaining things. I am going to make a list of questions to ask him since it is tomorrow I start this stuff! Wish me luck!

sandykr's picture
sandykr
Posts: 57
Joined: Jan 2010

Now you'll have all that time in isolation to search the web and find out all kinds of info!! Information can only contribute to your treatment!
Hope your RAI goes smoothly, I had 3 weeks ago, and aside from being tired.....and bored, it was really ok. People recommend sucking sour candies and drinking lots of water.

Good luck

virginiaD
Posts: 2
Joined: Nov 2010

I am on the low iodine diet and will have my first iodine radeation on monday november 8th 2010. I am realy nurves and wondering if this is realy nessasary...I have been on the internet and found that alote of people that go threw this had ended up with canser again and i am wondering if the iodine radeation with give me canser (maybe in other parts of my body). Pluss do you know how long i have to stay on the diet it says for 2 weeks before so does that mean on the day of my first shot i can stop the diet?? Peaple are saying that this is there 2 time or 3rd time. So will i keep going threw this ....I dont think i could handle going threw all this again>> My doctor isn't exsplaining anything he just says it inportent to do this...and im just not shure if it is.

virginiaD
Posts: 2
Joined: Nov 2010

I am on the low iodine diet and will have my first iodine radeation on monday november 8th 2010. I am realy nurves and wondering if this is realy nessasary...I have been on the internet and found that alote of people that go threw this had ended up with canser again and i am wondering if the iodine radeation with give me canser (maybe in other parts of my body). Pluss do you know how long i have to stay on the diet it says for 2 weeks before so does that mean on the day of my first shot i can stop the diet?? Peaple are saying that this is there 2 time or 3rd time. So will i keep going threw this ....I dont think i could handle going threw all this again>> My doctor isn't exsplaining anything he just says it inportent to do this...and im just not shure if it is.

rzemach's picture
rzemach
Posts: 33
Joined: Oct 2009

Hi
I did find that some of the info on the net made me scared of the whole thing. In the end, it was not as bad as I thought it would be (surgery, going hypo before RAI, and the RAI treatment itself)

This forum did help me with some important questions that I had. One very important thing, after ultrasound and biopsy only one tumor was found on my thryoid that was cancerous on the right lobe. My surgeon advised to take out the whole thyroid and my endo advised to take out one lobe. After much deliberation which included help from this forum and other internet sites I decided to take out the whole thyroid. After surgery it was found that I had two tumors on the left lobe as well and that the cancer was in the thyroid itself. Being informed helped me to make the right decision and avoid two surgeries.

Robin

Thyrogue's picture
Thyrogue
Posts: 6
Joined: Jul 2010

My doc seemed pretty lax about the low-iodine diet, too, and said he had thought the Thyca diet was a little "extreme". Then in the next sentence he told me that there was a 50% chance that the RAI would work the first time. I didn't like those odds (I think you might be feeling like me as in the odds haven't quite been in our favor) and decided it couldn't hurt to be a little more diligent in following the diet if it meant better odds of eliminating the remaining thyroid tissue the first time. I followed Thyca's diet for 2 weeks and took my RAI this past Friday(7/30) afternoon, and I was told I could start eating "normal" again 48 hours afterward by the physicist who gave me the capsule. As excited as I am about that, I don't really have an appetite since I've taken it either.
How did your treatment go?

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

Just in case you haven't come across it yet, I'd recommend checking out the thyca.org website. They have some really great information for thyroid cancer patients including a discussion on RAI and a low iodine cookbook you can download for free. There is also great easy to understand inforamtion about thyroid function, labs, cancer types, etc. I found it to be an incredibly helpful resource (still do, actually).

grateful1
Posts: 81
Joined: Jun 2010

my dr also did a study at their hospital--a top one in nyc--and doesn't feel the diet has to be quite as strict as the one from thyca--it's for seven days--and you can have soy and milk, e.g.

weberdns
Posts: 156
Joined: Mar 2010

And you need to get another doctor. Any docotor who tells you not to look on the internet for information is not comfortable being questioned , and is not a good doctor. Also it isn't always good if a surgeon picks out your endocrinologist as many times they are 2 bad doctors working together , and hide each others mistakes or inadequacies. Talk to your PCP about an endocrinologist, talk to anyone who sees an endo and see who they think is good.

Farzana25's picture
Farzana25
Posts: 24
Joined: Dec 2010

Hi there

i had my whole thyroid glad removed on 19th Nov. and i will have my RAI on 21st dec. i had papilary carcinoma of thyroid. had a huge tumer on my right lobe. left lobe was totally normal. u can check the below link for the need of low iodine diet. i think it will help u.

http://www.endocrineweb.com/conditions/thyroid-cancer/radioactive-iodine-papillary-thyroid-cancer

regards
farzana

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