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Effectiveness of LID

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Hi gals and guys,

After three days of my LID, I'm thinking it would probably be a good idea to do a spot urine iodine test just before I start the RAI treatment to make sure I'm able to lower my iodine levels enough. As far as I can tell from looking at my RAI treatment schedule, I don't have one scheduled. I say this, because already I'm not too sure how well I've been doing.

I'm guessing the effectiveness of the LID is the largest factor determining the effectiveness of the RAI treatment.

Has anyone had their iodine level checked immeadiately before RAI?

I'm going to call my endo tomorrow and ask about this. I'll post his reply for all.

Thanks,
Alan

nasher
Posts: 507
Joined: Apr 2010

yep I have a listing of all my labs from before i was dignosed to current...

april 19 2010 started LID
April 26 2010 labs run for TSH sensitive (was at 95.690) and FT4 (0.21)
May 3-5th 2010 trace dose and treatment dose of RAI my treatment dose was 175mCi of I-131

comming up this year (for my 1 year out scans)
will start LID May 2nd
labs may 9th and then start of thyrogen injections (I was told I only need 1 week of LID since they are not doing a treatment this time)

yes the better you can stay on the low iodine diet the more radioactive iodine your remaining thyroid tissue will uptake

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Hello again,

Little did I know when I chose the title for my first post it would be doubly significant.

I just talked to my endocrinologist, he surprised me greatly by saying it is not certain a Low Iodine Diet increases the efficacy of Radioactive Iodine Therapy!!!

This got me googling. And I found a study for just this subject. Here is the conclusion.

"Given that LIDs reduce urinary iodine measurements, increase I-131 uptake, and possibly improve efficacy of I-131 treatment, we currently favor the use of a 1-2-week LID before I-131 therapy or scanning. However, more research is needed to clarify the role of this dietary intervention."

And here is the link ... http://www.ncbi.nlm.nih.gov/pubmed/20860420

Perhaps this is why no one has had a urinary iodine level before RAI.

I'll continue to follow my LID as strictly as I can. There is still a very good possiblity it will be beneficial.

Alan

LBlackman
Posts: 113
Joined: Mar 2011

Alan, you aren't alone, my endocrine said the same thing! I am taking it upon myself to do the LID before me scan although she didn't recommend it and the nurse asked why I was torturing myself....well hurthle cell carcinoma doesn't pick up 131 easily so I am hoping to get as accurate results as I can. I am not looking forward to it, but doing it for two weeks is better than having your test come back clear when actually it may not be. I wish you the best of luck and I too am learning to be my own advocate thanks to everyone on this site! Keep us posted as to how things turn out....
Lynne

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Hi Lynne,

Yes, my reading of the conclusion is that everything that can be measured indicates LID is beneficial ... BUT ... there is no direct evidence.

I don't know if you have been on a LID before, but after one week I'm not having many problems. The biggest issue is finding high fiber foods. I've doubled my salad input and am having oatmeal for breakfast every day but my digestive track seems to rely on high quantities of grain fiber. I used to get most of my fiber from high fiber breads {12%, 16% or 20% rda per serving}. Oh well, two more weeks isn't that long. I think I'm going to extend mine another day or two to reduce the RAI's competition. This seems right to me, even if it isn't on the list of things to do.

I've also found not all vegetables are OK. Some are high in iodine and a few block iodine uptake. Here's the web site where I found this ....

http://www.naturalhealthtechniques.com/diet_nutrition/iodine.htm

I guess it's accurate, with the internet you can't be sure.

Alan

LBlackman
Posts: 113
Joined: Mar 2011

Thanks Alan! I will definately check out the website. I know I will go crazy on the diet as I will have to fix special foods for me, then a different meal for my parents, whom I care for, so I want to be as prepared as I can. At least I can stay on synthroid until the day before I start the thyrogen injections. My Dr. has never recommended the LID, I am taking it upon myself to do it. I had been on the Atkins prior to my scans and have figured out that it may have masked some remaining cancer cells so I am doing a regular diet up until a week and a half before the scan starts. Any tips are very much appreciated.
Lynne

Linda Jo
Posts: 14
Joined: Mar 2011

Are you sure you are to stop the synthroid before the thyrogen? I do not discontinue synthroid at all. That's the point of the thyrogen injections -- they simulate a discontinuance of synthroid so you don't have to go hypo.

nasher
Posts: 507
Joined: Apr 2010

----
Yes, my reading of the conclusion is that everything that can be measured indicates LID is beneficial ... BUT ... there is no direct evidence.

----

there is biological evidence.
When your body needs iodine (thyroid tissue) it takes in iodine.
when you reduce the amount of non radioactive iodine avalible to whatever thyroid tissue remains and add radioactive iodine then there is a much greater chance that any thyroid tissue will take up some of that radioactive iodine.

and conversly if your body is flooded with non radioactive iodine your body will not want to take up much iodine of any type therefore your body will only uptake very small percentage of the iodine it would have while your body has radioactive iodine in it and since you have alot of non radioactive iodine as well the percentage of radioactive to non radioactive will be less and therby not be enough for the scan to detect the radiation therby may show up as a false clean scan

LBlackman
Posts: 113
Joined: Mar 2011

My thyrogen injections start May 9th. I did the diet Monday and yesterday and my stomach was so upset, I didn't think I was going to make it home from work. I decided to eat normal, just cut out salt and start it when I start my thyrogen injections. I hope this will help. My Dr. said not to worry about the diet, I have to drive from FL to SC for my scans and can't do it feeling like I felt on the diet. I think I will be able to handle it once I am already there and don't have to worry about driving an hour to and from work.

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

Lynne,

You don't have to cut out salt, just iodized salt and sea salt. Uniodized salt can be found in most grocery stores.

Alan

LBlackman
Posts: 113
Joined: Mar 2011

I have been using non-iodized salt, I guess it's my cooking...lol My understanding is that you have to prepare everything even your own bread. Monday I made the fruit shake for breakfast, ate the lunch in tin foil (thyca.org) and had indian meat for dinner. I am using the salt, just eating more fruit in my diet. I don't know what I am doing wrong unless it's the fruit. I actually didn't mind the "taste" of the foods, it just upset my stomach so badly.

LBlackman
Posts: 113
Joined: Mar 2011

I read some of the other posts and maybe my problem is fiber. Maybe I was doing too much fruit and not enough fiber. I was having plenty of protien though.....hmmmm @ Alan, are you making the oatmeal from the cookbook? Salads too?

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

I didn't use the thyca cookbook at all. I used all fresh vegetables, I never knew frozen vegetables had salt in them until this. Luckily my sister enjoys baking bread and I asked her to bake some for me using uniodized salt. I stayed away from a lot of stuff I would normally eat {dairy, eggs, sauerkraut, etc}. I ate more fruits and vegetables than normal. I probably ate more meat {chicken & pork} than I should've, but I think I compensated in other areas, some of the stuff I cut out all together was on the limit list with meat {dairy for instance.} Vinegar, olive oil & spices for salad dressing. Oatmeal everyday for beakfast, this might be your problem, oatmeal sometimes gives me a mild upset stomach {sort of a sour stomach.} Since I couldn't mix it with milk, I was adding a little honey and didn't have any upset stomachs from it. Normally I have oatmeal once or twice a week anyway.

I could tell if a pre-packaged food had any salt in it from the sodium content. If there was any sodium at all on the label, no good. There were some foods that had no salt in the ingredients list but still had sodium, I stayed away from those as well. The FDA may not have heard of low iodine diets, but they know about low sodium diets. Almost all of the pre-packaged stuff has at least some salt in it.

I think it's important to remember, this is a LOW iodine diet not a NO iodine diet, be as careful as you can but don't imbalance your diet. I paid very close attention to the lists of foods {both my doctor's and thyca's} and prepared stuff the way I liked it as much as possible.

I definately had lack of fiber problems. I was mildly to moderately crampy at times and slower than my normally slow self. I tried compensating with wheat germ {not as good a source as fiber enriched bread, but store bought bread's a no no} and twice the salad and fruit input as normal. Still it wasn't enough, my LID ended 4/14 and I'm still not back to normal, I'm getting closer {I'll skip the details on this.} I've never counted it up, but I think I get about twice the RDA of fiber to keep me something close to regular.

Alan

LBlackman
Posts: 113
Joined: Mar 2011

My Dr. gave me no recommendations for the diet, so of course no guidelines. I just pulled recipes from the thyca.org cookbook and I have no energy anyway when I get home to cook or do anything else. I tried it, but ended up in the bathroom all night and barely made it home from work to the bathroom yesterday. I usually care for my parents who are in their 80's and my 11 year old son, but haven't been able to do anything lately.

Baldy's picture
Baldy
Posts: 226
Joined: Mar 2011

I'm sorry this is causing so many problems. You can't make yourself sick over this, I don't know what part of the diest is causing it.

Alan

PS Check your email

nasher
Posts: 507
Joined: Apr 2010

I am on it as well but i cheated... about 1 week before i started i prepaired everything and put it in the fridge or freezer (or its fresh fruit and i am buying it as needed)

its hard I know.

no i didnt use the recipies in the Thyca Cookbook but i did use the 1 page summary for a guideline ... last year i had no problem. this year the only problem is my wife or mother in law want to go out to eat or the like and keep forgetting im on the diet this week

what is the problem you are haveing? mabey we can help

LBlackman
Posts: 113
Joined: Mar 2011

Thanks, but I just got a call from the hospital, my scan was cancelled due to a shortage of Thyrogen. I turned down a full time permanent job, made myself miserable over this, and now this.....

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