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Thyroid Cancer- Low Iodine Diet & Waiting for Radioactive Iodine Treatment

This past week has been a nightmare- an absolutely awful nightmare.  I don’t even know where to begin. 

As I wrote previously, my surgeon said one of the proactive things I could do before having my thyroidectomy and neck dissection was make an appointment with an endocrinologist.  So I did.  One he recommended at one of the hospitals in my state, Colorado, with an excellent reputation. 

When I made the appointment back in MAY, I specifically pointed out to the scheduler, that my surgery was June 12th, and the appointment with the endocrinologist wasn’t until this past Tuesday- July 21st.  She assured me that was fine.  I asked her again- that six weeks wasn’t too long to go.  She told me again, it was fine.  These are the “experts” so I figured I was in good hands.

Six weeks later I am a hormonal, emotional, tired, wiped out mess.  I feel like I have aged 50 years in the past six weeks.  Evidently the hormone your thyroid produces regulates all kinds of bodily functions- like energy levels, emotions, metabolism, memory, concentration- just to name a few.  When I met with the endocrinologist on Tuesday, Dr. S., (another Dr. S.) she was shocked to find out I had not been on any thyroid hormone since my surgery.  She looked at me and said, “My god, I bet you feel like crap.”  That is one part they did get right.  She told me they would rush my radioactive iodine treatment (RAI).  Only problem- I haven’t been on a low iodine diet. 

I called a week after my surgery and asked this same office if I should be on a low iodine diet.  They told me no- I would receive all that information at my appointment. I pointed out again, that I had a six week time frame, and they told me it was fine.  I’d learn everything about the diet during my appointment. 

Since I can no longer manage this mess by myself, my sister, Vanessa, called bothered them until she got the person on the line that could help.  That is how we found out the scheduler had “old” information.  The treatment coordinator, B., told her I could have received RAI three weeks after surgery, but I have to be on the low iodine diet now for ten days.  I could have started the diet the week I called to ask them about the low iodine diet, and have had all of this behind me.  But now I have almost two more weeks of “feeling like crap” and trying to figure out a diet and what I can and can’t eat. Vanessa expressed the displeasure this has caused me, and the state I am in.   B. apologized and sent me a personal e-mail apologizing as well.  Vanessa scheduled the RAI treatment for me, for August 3. 

I am so mad and beyond frustrated at this hospital.  I talked to a friend who is a nurse,  who told me this is negligence, and there is no excuse for something like this happening.  But, what can I do?  It isn’t B.’s fault.  It is one of those nightmare things that you never imagine will happen to you, but it does.  So somehow, my family and I have to get through the next 2 weeks to make it to the appointment where I can receive the RAI treatment.

I still don’t know how long after the RAI treatment I have to wait until I can receive the replacement thyroid hormone.  As it is now, it will be 8 weeks and counting.  In the meantime, I am losing more energy every day, my boys are suffering, and I am missing work. 

I am having a hard time with this blog post.  I said I was taking a break from it two weeks ago, but then I said I wasn’t, but I am going to be forced to now.  I mentally and physically do not have the energy to write much until I am finally on the thyroid replacement hormone.  For now, what energy I do have, I have to put into my boys and into my health. I will try to post quick updates on Twitter when I can. 

I appreciate any thoughts and prayers you can send my way- two weeks seems like an eternity right now, but there is nothing left to do, except get through them.  Thanks again to everyone for all their support, love, and help. I literally could not do this without my family and friends.  Love you all. 

Heather

43 replies on “Thyroid Cancer- Low Iodine Diet & Waiting for Radioactive Iodine Treatment”

wow. I’m really sorry you’re going through all this. I really hope the iodine treatment makes a big difference for you – once you are finally able to get it. You will get through the next two weeks, you can do it.

All this makes me wonder though… I am deathly allergic to iodine. How on earth would they treat someone with thyroid cancer if they had that allergy? Nothing for you to worry about of course. It just made me wonder.

Feel better.
Sorry, forgot to add great post! Can’t wait to see your next post!

Jeez. You’re getting really horrible medical treatment. My personal history includes multiple nodules, Hashimoto’s thyroiditis, papillary carcinoma and a total thyroidectomy. My endocrinologist (whose sole specialty is thyroid) has been in charge of my thyroid care since long *before* my surgery. Perhaps Mary J. Shomon’s book _Living Well with Hypothyroidism_ would be helpful to you. I haven’t read it myself, but the book is highly recommended. By the way, since you’ve had thyroid surgery, you’ll be dealing with hypothyroidism for the rest of your life. For most people, if it’s managed correctly, it’s not that big a deal.

I agree with this. My endocrinologist (whose sole specialty is thyroid) has been in charge of my thyroid care since long *before* my surgery. Perhaps Mary J. Shomon’s book _Living Well with Hypothyroidism_ would be helpful to you. I haven’t read it myself, but the book is highly recommended. By the way, since you’ve had thyroid surgery, you’ll be dealing with hypothyroidism for the rest of your life. For most people, if it’s managed correctly, it’s not that big a deal.

Hang in ther you will be on thyroid meds 24 hoursafter you have your RAI treatment and a regular diet 48 hours after that. I guess you know now that it would have greatly benefited you to be on T3 thyroid meds called cytomel,post surgery. Im on my second day of low iodine diet im trying to be as creative as possible. I know you are probably not as inspired as I am since I haven’t felt the effects of being hypothyroid quite yet. May I suggest the book The Thyroid Solution by Dr. Ridha Arem. It really addresses the mind /body connection of this diease. It personally took 2 years and countless docs ignoring my symptoms before I was diagnoised with papulliary cancer. I had my thyroid removed 6/23 and stopped my cytomel 8/1. I will be having my RAI on 8/14. Good luck to you. Please go on the Thyriod-info wbsite to find a new doctor.

Thanks for the resources, NJ Mom. I am planning on switching Endoc. once I am feeling bettter, so I will be checking out that website for sure.

I am almost done reading another book about the mind/body connection to cancer and diseases, (When The Body Says No- Dr. Gabor Mate) and I can’t put it down. Thanks for the suggestion for The Thyroid Connection.

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Hi from Miami,
I feel your pain. We MUST NOT forget that doctors are making guesses. A few of them look meticulously at the data and at your history; most of them don’t know you from a hole in the ground when you walk in. Do the research, don’t panic, and listen to your body. Highlights: my first endocrinologist couldn’t squeeze me into his schedule. I was so sick after thyroidectomy. Finally he saw me, tossed a box of Immodium at me in his hallway and made it to his golf game. After RAI, I still wasn’t at zero. Went to another endo. He insisted I go to another city and to a doctor doing an experimental procedure. My levels were low; no metastasis. I declined; insurance wouldn’t pay for it, and being out of town would have been costly. He thought it would be interesting to see what happened. So he thought he should try the experiment himself. A long needle stuck through my neck which made me convulse. I had to beg them to stop. That was 5 years ago. The 3rd guy has his patients weight 8-10 hours in the waiting room. Everyone brings my lunch and dinner, laptop, etc. Another ordered expensive medications that were completely unnecessary and then gave me a protracted hard sell–calling me at my office again and again. I finally found a great doctor. He spends time with me; he knows the details of my condition; he goes to medical conferences; he uses common sense. I’ve never felt tired or had any symptoms of thyroid cancer except at the hands of bad doctors (one panicked and overdosed me with an unnecessary injection of calcium which made me vomit until my body nearly caved). I wish us luck.

Hello!
I am so surprised that the surgeon did not put you on Synthroid (or similar) right after surgery. I had my thyroid out on May 19, 2009 and started taking hormones the next day. I am having my RAI at the end of August because I had a Cat Scan in March (which diagnosed the thyroid cancer), but in doing so they used contrast which contains iodine so I had to wait 6 months from that time. I hope all is going well with you!

Hi there,

I am in your same situation…I am a 21 year old college student that had a total thyroidectomy last June (papillary carcinoma). It has been a complete mess going from doctor to doctor trying to get the RAI treatment. Luckily my mom has done much of the work for me. I’ve been off medication for almost a month now and it’s been especially hard the past week or two. I feel really slow and tired all the time, and just…like crap, like you said. I’m finally getting my RAI on Monday, which I’m really excited about, because then it won’t be long until I can go back on medication and get my life back. I want to start being active again! Anyway, it always helps me to know that there are other people in my situation. Best of luck to you 🙂

-Kate

Hi,
I have papillary carcinoma after goiter removal and must go through RAI on September 11th, 2009. I am sorry to hear about your situation, but comforting to know that I am not alone. I will be on the LID for the next two weeks. Not looking forward to all the precautions I have to take to not expose my family!! The MedHelp website has helped me tremendously. You might want to check it out.
Lucy

Hey there… sending you positive thoughts and hugs! I’m currently in isolation for radioactive iodine and I stumbled onto your blog. I hope you are doing well!

I am 38 yrs old. I had my thyroid out in 11/2001 and doctor told me was not necessary to have any radiation….no tests for cancer done since…now I have a good Endocrinologist who is going to test the tissue in my neck and see if it’s cancer and he said i should have had a test twice a year to test for cancer…I am worried but the low iodine diet is hard because you have to cook almost everything you eat…anyone can email me at sassiergina at yahoo dot com…Gina L.

Like Tammy, I am surprised that the surgeon did not put you on Synthroid (or similar) right after surgery. I had my thyroid out 3 days ago (Oct 27, 09) and started taking Synthroid in the hospital the next day. The surgeon sent me home with a 30 day prescription to carry me through to my visit to the endrocronoloist.

Sorry that all this happened to you. May i suggest M.D. Anderson cancer hospital in Houston Tx. It may be a traveling trip for you but they seam to know what they are doing.
Tony

I was diagnosed with Hashimotos Thyroiditis and hyperparathyroidism. It’s amazing what havoc too much calcium can have on your body. The lumpy thyroid issue was secondary but I had it removed during the parathyroid surgery (Dec.21,2009 at CU Medical in Denver) to be cautious. Turns out the thyroid had two papillary cancerous tumors but no cancerous tissue in any surrounding areas of the thyroid or lymphnodes. So now I am looking at RAI treatment and thinking of using the thyrogen treatment route rather than the 6 week no synthroid route, has anyone done this? I believe I am a good risk for this treatment choice. I am also stunned that this is “the good kind of cancer” to get if you are going to get cancer. Wish no one had ever said that to me. Definitely has caused emotional roller coaster for me.

I had a total thyroidectomy in Nov. ’09 and scheduled for RAI on 2/19/10.. I have been taking synthroid since my surgery but had to go off of it to prepare for the RAI and I am to start the LID a week before time. This whole process has been exhausting to me but am glad to know I’m not alone!

Hi to All!!..I’m Lizamae 22yrs old and had a total thyroidectomy last January 28. I’m super downgrade these days coz I’m still young and have this papillary carcinoma already, I mean cancer is a big deal right?. I will be taking my RAI treatment by next month & I’m really scared having to sleep alone in the hospital for 4 days. I really need some piece of advice right now.Is it really that scarry or painful? because its radiation, and do you know someone who got better after taking these treatments and having to live normally? Thanks!..GOD Bless us All!!

Lizamae,

You will be fine. RAI can make your neck tender and swollen but you can have Advil, and also sucking on hard candy for a few days helps too.

It is radiation, but the side affects are few. I felt slightly sick 8 hours after taking it. Sometimes you can lose taste sensation for a few weeks. But it was not painful. Cancer is hard to battle no matter what kind it is, but I tried to look at it like this is what I needed to do to get healthy and beat it!

I have been declared cancer free since August, and papillary carcinorma has a CURE rate around 97%. Re-occurances are rare, so yes, there are *thousands* and *thousands* of people who are cured, and go on to live healthy and normal lives.

It is scary when you are in the thick of it, but this stage doesn’t last forever. The RAI will ensure any remaining cancer cells are killed, so you can be healthy. Once you get through the RAI, the rest is mainly check-ups and blood work to make sure things are fine.

Hang in there- you are almost done, and it does get better.

Keep in touch. 🙂

Heather

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my goodness, it’s crazy that this is (was) happening to you. it’s unfortunate that your doctors didn’t pay you the attention you deserved. they’re everywhere though, so it’s better to just take it in stride, though it didn’t make you feel very good. in a way though, it makes me feel better to know that there are all these people that feel the exact same way I do in having a faulty thyroid. I’m hyperthyroid, with Grave’s Disease. I was diagnosed when I was fourteen, six years ago, and I’m finally FINALLY getting RAI next week. I feel like crap all the time, with panic attacks and whatnot. My life is suffering, but I’m so glad that I’m going to be back to normal after this. I hope other people read this blog and feel better, like I did.
Maddie

wow…thanks for this blog. so great! I’m right in the thick of this darn thyroid cancer. Just had surgery 10 days ago. No more thyroid.

I went to radiation oncologist today. I have to do the 123 scan in two weeks & probably the full 131 (RAI) therapy. I’m not on any synthetic hormones (although I wanna be. I’m tired all the time)

Dr. told me I DID NOT have to do low iodine diet. He said the nuclear medicine doctor said it Is that weird?

THANK YOU to anyone who can help me out.

Susanna,

There are different treatments- not all doctors recommend the low iodine diet. They could be going a different route, but usually I have heard that people who don’t have to do low iodine diet are on synthroid/hormones. I would at least ask your doctor for clarity. You deserve to know the reasons behind the treatment. If you aren’t satisfied with the answers, get a second opinion. I wish you well in your recovery. It can be hard after the surgery, and before RAI, but it will get better, and you won’t always be as tired. Keep in touch, and let me know how you are doing.

Heather

By Post Author

Heather:
Today, SIX WEEKS after surgery & having zero thyroid meds….I got the body scan (did the RAI pill a week ago….wow…this last week has sucked! glad it’s over)….so anyway, today I got on Synthroid.

How long after you started taking it did you start to feel better? I feel like I’m walking dead…like every joint & muscle is sore..constantly tired, but never wake up feeling refreshed. I have metallic taste in mouth after RAI treatment.

Don’t mean to sound like a grouchy old hag! Feel like I lost my mind & sense of humor 🙂 LOVE your blog. thanks

Susanna, Thanks for your comments. I ended up going almost 13 weeks without meds, I noticed a difference within hours of taking it.

This is rare though- the doctors warned me it could be about 6 weeks before I really felt better. They told me just like you don’t immediately feel bad, you don’t immediately feel good. I was told every day, I would feel a little bit better. So if you feel even some improvement, it should be okay. If you go a week or two, and do not feel better at all, or feel worse, call your Dr.- they may want to adjust the dosage.

Thanks again for your comments. I hope some of the posts have been helpful. I just posted a new one- it was a year ago today I had my surgery.

Keep in touch and let me know how you are doing.

Heather

By Post Author

Lynn, I, too, have Hashimoto’s and hyperparathyroidism. Had TT on May 19, 2010. The adenoma was inside the right lobe of my thyroid. You are right. Calcium can do terrible things when out of balance! I am now taking small amounts of Synthroid, trying to work my way up to a decent amount. Tried Armour, Cytomel, Levothyroxine…my body has a hard time accepting any of it. Not a fun time, let me tell you lol!

Hello! My name is Kim. Just turned 35. I stumbled upon this blog, while being here in RAI therapy isolation at home. I have thyroid cancer, hopefly not anymore) and had a total thyroidectomy on May 26, 2010 at Rush Univ in Chicago. I went on synthroid day after surgery. Was on it until June 19. Went off of it for 4 weeks to wait for RAI. Boy were the weeks gettin harder and harder to do any kind of activity, on top of that I had to go on low iodine diet, never realized that its in EVERYTHIN cause salt of course. But I totally understand your thoughts feeling like an old hag! I could even remember things! Well I took the RAI pill yesterday July 16. The thing I found funny is Dr. recommended me to start taking synthroid the day after RAI pill.?? I did by her order and feel little better but has anyone else been instructed to take it that soon after RAI? I know everyones different but just curious after reading other peoples blogs.
Thanks for all your comments!! Also has anyone found something great for the scar? I was using vit E oil, now a silicone based product called ScarFade by Hanson products.

I’m on day five of the low-iodine diet without meds and have started feeling weak. I thought it was because of my diet, but this is feeling different. I’m continuing to work through all this, but wonder now if I can. The nuclear meds is scheduled for 12 days from now. I hope I can make it. I’m getting worried. I must say this blog is just wonderful for a person like me. I have a twelve and eight-year old whom I’m already affecting. I hope I can do this!

Geneva,

I was posting my latest post, and saw your comment. I am on my way to work, but just wanted to tell you, you can do this! It does get hard, and you will feel very tired and exhausted. You are becoming hypothyroid. Take it hour by hour if you need to. Let everything go, and spend what energy you have on your kids. I found eating a lot of protein raised my energy level some. Maybe you can try that.

Hang in there- you can make it. You will feel better again very soon. I promise.

Let me know how you are doing, or check in on my Facebook page- I’d love to hear from you.

https://www.facebook.com/pages/A-Mamas-Blog/122740853553

Heather

By Post Author

I have been off of the thyroid meds since Monday and started the low iodine diet yesterday. I feel okay right now, a bit tired but I now it is coming. My guess next week won’t be fun … then the treatment first week in Aug … It seems like every doctor visit, they tell you a little more about what is going to happen … I have to be in seclusion and not sleep with my wife for 3-4 nights while the radioactive stuff leaves my pores, and then I hear of the taste buds pain & no flavor. Well from all that I have read this is still the best option. Thank you all for your writings it has helped.

I am eating Matzo, natural no salt peanut butter, and polmar fruit jams … it sure isn’t Jiff/Welches/ and Wonder Bread.

my daughter has thyroid cancer, shes only 20. she had the thyroid removal surgery,but then her medicaid cut her off at 20 years. she need iodine treatment right away. but we have no insurance, and insurances dont want to cover her pre-existing condition. help we need insurance fast.

Hi Kim,
I am also in Chicago and am on the LID while waiting to have radioactive treatment. How did things go for you, since your post was from July??? Do you have to wear plastic gloves in the house so as not to “contaminate” anything, such as computer, handles, etc? How long were you on the low iodine diet? This blog is certainly helpful! thanks in advance!

I need some advice, please, I am getting my rai131 treatment in a week 1/2 and want to know what dosage they had. My doc wants me to have the 150 dosage I think its a lot for me. I had a thyrodectomy with 8 cancerous lymph nodes that were taken out, out of44 lymph nodes (stage 3). What dose is best 100 or 150 for rai131 treatment? Thanks everyone! =)

Victoria,

I’m sorry to hear about your thyroid cancer. It seems like the RAI dosages can vary a lot. I had 66 cancerous lymph nodes, stage 1 cancer, and had 100mcg of RAI. So considering you had some stage 3 cancerous lymph nodes, 150 mcg dosage doesn’t seem that radical. Obviously I’m not a doctor, but if you think something isn’t right, I’d suggest getting a second opinion. Good luck to you, and keep me posted. 🙂

By Post Author

Thank you so much for your response! =)

Honestly, I’ve been wanting to hear from someone that had lymph nodes removed. Reason for my stage 3 is based on my age late 40’s. If I were in my 30’s than I would be stage 1B, something like that. Thanks for your support, I guess it isn’t that radical. Its just scary. It does vary. I was just wondering now, if anyone took calcium and calcitriol while on the diet. I stopped and hoping rai131 doesn’t affect my bones or get something later like lukemeia.

Victoria

hope this is not too late.

I got 175mcI dose on my RAI (Dec 17th, 2010)

In my case they found 2cm thryoid nodule whoich was pappilary follicular and out of 27 lymph nodes, seven had cancer. They said my dose was very high. I was worried because I have not read anybody with 175.

But two weeks after that, I am back to work now, have my period so please do not worry too much.

Good luck!!!

RAI seclusion. Trying to prepare for something I cannot see, taste, smell or feel is puzzling. I’m supposed to trust that in 72 hrs. the contamination is gone. Why wash down the sink after I wash my hands? What about stepping on the floor after the two showers per day? If nobody is in the house with me, am I free to sit where I like or will the radiation linger wherever I touch? If clorox simply spreads the radioactivity, then how does one clean up? Anybody have any specific answers? So far, all I have is to kick the family out for 5 days, use gloves, plasticware and hope for the best.

Love the blog. I have been battling Stage IV Papillary and Follicular Cancer since 1999. I have had three surgeries, three I131 treatments, and multiple RAI scans every 6 months. I have always been lucky enough to receive the Thyrogen injections to avoid going off the med’s for 6 weeks. I still had to do the Low Iodine Diet.
Unfortunately, the hospital ran out of radiation and then the Thyrogen injections (with zero hope of getting the Thyrogen med’s for at least a year). My scan was put on hold. Three months later, my doctor found out and freaked out! I received a panicked phone call from the doctors office stating the hospital has the radiation and my RAI scan was set. I was immediately taken off my med’s for 6 weeks. I am at week 4 and I have every complication one can get plus more (hair falling out, fatigue, intensification of my tremors, joint pain, headaches, emotional, double kidney infections, stomach issues- due to lack of a gallbladder/throwing up and memory/concentration issues) and I am about to start the Low Iodine Diet for 14 days. I was told years ago that my system does not tolerate the loss of med’s, so the Thyrogen shots are the way to go for me. It helps alleviate the rapid system shut down I experience, due to being hyper sensitive. I have a new appreciation for all of you that have had to be off your med’s for 6 weeks prior to a treatment or scan.
All I can say is Thyrogen injections are the way to go. The Drug Companies need to step it up. Cancer patients have enough to deal with without making the process more difficult.
On a positive note, I may not have not made it to remission yet, but I live each day to the fullest. The cancer is inside me, but it does not define who I am. I will make it to remission one day and that day will be worth celebrating. Hang in there fellow survivors, survivors we are, take it one day at a time.

January 20 2013
Hello I had first surgery in June/12 and it was follicular cancer so had second surgery in Sept./12, I have been in the LID diet and had 2 shots of Thyrogen
2 separate days, never had to stop my thyroid pills, just finished my radiation
treatment (Stayed in hospital alone for 5 days) that was very lonely and now this week I will get my results…….. I have lost my taste but they tell me it will come back…. I am 76 yrs old.. feel very tired since all this has been going on but glad it;s over………… (Canada)

Hello all. I had a TT about 2 months ago. My surgeon took half on a Thursaday and then the other half the following Friday because they found pap cancer in the first nodule/half. Second half was completely clear with lymph nodes clear as well. I was placed on thyroid replacement meds the day after surgery. I just started my LID 2 days ago. Quite frankly my homemade beef stew, spaghetti, homemade bread with homemade butter, etc. has been wonderful. Fresh fruits as well. I hear a lot about how bad the LID is but I don’t see it. The recepies on line are as good as any meal if cooked properly. And, I feel as normal as I ever have on the meds. In fact, my endo changed my meds from what my surgeon had started me on and honestly I can’t tell any difference. I can work all day and come home and go till dark in the yard with no issues. I am a 54 year old male. I have RAI coming up in 2 weeks or so. Went with the thyrogen shots as my surgeon recommended. I am being overly cautious about any iodine intake as I believe the data. For all who r suffering I wish u well. Just wanted to give some hope to anyone about to lose their thyroid. I feel absolutely great and cannot see any change. Only downside is my voice has still not come back after about 5 weeks. Good luck and God bless u all.

At mamas blog
I just read your story. Not a good one I might say.
I too live in Colorado and have just been told I
Have hyperthyroid an will prob néed the thyroid out
Started the diet today to have my ct scan done.
Have not seen a endocrine dr yet. Please tell me how your story
Ends so I can make sure not to see this dr in this area.
They haven’t told me if its cancer or not, this test should tell us
Rt now my thyroid is as low as it can get
I feel like dog poop lol
Please advise n help if anyone can
Thank you
I still have weeks of this before my test much less any tx to feeling better 🙁

Hi, I just discovered this wonderful blog. Thank you so much to its creator and to all fellow thyroid cancer survivors for sharing your stories. I’m a 53-yr-old woman and am just recovering from my RAI treatment; I believe I received a 200 level dose. My cancer is Papillary and is now Stage iV, as I had a recurrence 16 years after my first diagnosis. Although I had a total thyroidectomy way back then, the cancer did return. I was not given RAI until now; if I had been, it probably would not have returned. Now I’ve got several – 6 or so – small nodules in my lungs. I will be receiving external radiation treatments beginning later this month, for about 6 weeks. I’m wondering if others have had a loss of taste following their RAI. ? I have not experienced any salivary problems (yet), but am so disappointed I cannot enjoy the taste of my food – especially the taste of salt. Everything tastes like cardboard. Does anyone know if this will come back? I sure hope it isn’t permanent. Perhaps it’s individual. Just wanted to ask. ~ Debbie

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