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Old 07-24-2006, 05:06 PM   #1
Senior Member
Join Date: May 2006
Location: northern virginia
Posts: 292
kwebster HB User
Low Iodine Diet - and general update

Hi Everyone!
I just got done week 1 of the Low Iodine Diet and no Cytomel. For those of you who need an update. I had a TT on June 21st due to papillary carcinoma and have to prepare for the full body scan and subsequent I-131 treatment. Post op has been a real struggle. Low calcium (still have problems) has taken a month to feel mentally back to normal - whatever that means. But as everyone has said, each day will get better. I am doing much better and can't wait to go back on my Levoxyl.

Anyway, I thought this diet would be a real bear but turns out it's not that bad. I am following the ***** guidelines. No processed foods - even bread! I will admit the hardest part is no dairy but that's temporary. I am not hungry, feel like I'm eating healthy. My energy levels come and go, but I am not bedridden because of being hypo. The only thing I notice is my hands, and limbs going numb at night.

I have the bloodwork and scan the week of August 1st and then I'm pretty sure I'll go in the hospital for two days for the I-131. This is the first week since surgery I haven't been to a doctor's appoitment.

Keep the faith! Talk to everyone soon.


Old 08-02-2006, 12:45 PM   #2
Join Date: Aug 2006
Location: Nova Scotia, Canada
Posts: 5
CanoeKeji HB User
Re: Low Iodine Diet - and general update

Hi Kathy:

I am new to this board & was just diagnosed with papillary carcinoma 2 weeks ago so am looking for someone who has "been there and done that". I am still waiting for my first appt. with my surgeon and was wondering if you are up to giving me hints on what I should ask, etc.

I am in eastern Canada and am 50 years old. I just had a complete hysterectomy May 17 & am now facing more surgery and possible treatment. I have been told by GP that until the surgery is done and they see what stage this thing is at, the oncologists don't become involved.

Any info - or a referral to a site with info would be appreciated.


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Old 08-02-2006, 01:28 PM   #3
Senior Veteran
Join Date: Dec 2005
Location: Savannah, GA
Posts: 633
Archie343 HB User
Re: Low Iodine Diet - and general update

Oncologists will usually defer to an endocrinologist when it comes to thyroid cancers. That's exactly what mine did. Treatment of thyroid cancers is quite different from the treatment for other forms of cancer.

But at some point you will probably need to get a radiation oncologist involved since they are experienced with the radioactive iodine treatment that is a common follow-up to a thyroidectomy.

(Mine was follicular but the surgery and RAI given is the same as for papillary, in most cases.)

Old 08-02-2006, 01:34 PM   #4
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Join Date: May 2005
Location: NY
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Re: Low Iodine Diet - and general update

If you're in Canada, there are many gov't health websites I found when I was diagnosed that explains the protocol for treatment there.

I had pappillary last year. Thankfully, it's very curable. In my case, my care is managed by my endocronoligist. After my surgery, I had a 2.5cm nodule, so I had to have RAI treatment. My endo. with held medicine after surgery, I went "hypo", and then went to the nuclear medicine dept. of my local teaching hospital, they did scans, determined my dose. In my area, it was outpatient, I took a pill, went back for scans, and a year later they checked to see if all thyroid cells in my body were gone.

It wasn't easy, but it was nothing like other treatments for other cancers.

You will do well, but you must keep an optimistic attitude ----it makes it go so much faster and easier.

Old 08-03-2006, 02:40 PM   #5
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Join Date: May 2006
Location: northern virginia
Posts: 292
kwebster HB User
Re: Low Iodine Diet - and general update

Hope you are doing well. Sorry to hear about the dx but the good news is that pap. carcinoma is very treatable! Seriously, I know you probably freaked out about the "C" word. I'm still a little wierd about it. A few words of wisdom (and I'm not sure how the Canadian health system works). I have fantastic health insurance so I was able to pick and choose treatments and doctors.

First, get an appoitment with a surgeon to schedule surgery. I had to wait about 4-5 weeks between the biopsy and surgery (which I hear is not too bad). Waiting stinks!. Anyway - most doctors here in the US including the ones I saw at John's Hopkins will want to do a total thyroid removal. I suggest taking the whole thing out especially if you have the radioactive iodine treamtment - but defer to your doctor. If you have pap cancer there is a 70% chance it will be throughout the thyroid. Ask about lymph node dissection since some of the cancer ususally (not all the time goes to a lymph node in the neck). Ask to see if your surgeon monitors your voice box nerves during surgery so they aren't damaged and monitors your brain level awareness during surgery. They all did that with mine.

Then ask about your parathyroid glands. Most people have between 4-5 but these suckers give you a hard time after surgery because they get bruised and lead to low calcium levels. Also, have a plan right after surgery/discharge to get you on some short acting thyroid meds like cytomel until you need to do the next step which is prepare for the ablation (killing of all remaining thyroid cancer cells).

That means you'll go on a low iodine diet, get some body scans, become really hypothyroid, and then get the I-131 treatment. Most of all have some really suportive people and family that can help. I was in the hospital overnight. I think the surgery is probably easier that the hysterectomy. Not too painful, but you'll definately need some help. I totally crashed mentally and physiologically afterward and can now laugh at the entire situation but you can feel like crap.

The staging will be done by the pathologists after the surgery. They initially read mine as pap. during the surgery and later staged it. I think I have Stage II (since it went to a node) and was multifocal (found throughout the gland). But the prognosis is still the same. I didn't need to see an oncologist since my endo is the head guy on the case and he is well renowned in the area.

Anyway, the key is to find a really good endo and surgeon!!!! The nuclear med people will work with the endo.

Last, do a google search about thyroid cancer survivors and you will pull up the US group that can help (if I write it here it will get zapped out). They are the ones that publish the low iodine diet. There are tons of sites to help. Keep in touch with people on this board as well.

Keep positive and stay in touch!


Old 08-04-2006, 08:12 AM   #6
Join Date: Aug 2006
Location: Nova Scotia, Canada
Posts: 5
CanoeKeji HB User
Re: Low Iodine Diet - and general update

Thanks to all who responded- especially your detailed post, Kathy. I have saved it as a word document to take to my surgeon's appt. - whenever that is. You're very lucky to have been able to use Johns Hopkins. My nearest hospital for surgery and treatment is a 4 hour round trip so, if I have RAI, I don't know how we will manage the drive home!

I have a new dilemma to face- given the unknowns re: dates for surgery & possible treatment, my college is really encouraging me to take the term off and I need to give an answer before I can even see a surgeon as classes begin Sept. 3 and we need a replacement. I have the sick time and all, but
1. how long does it actually take to come back from the surgery & return to work
2. If I have to "go hypo" and have RAI treatment- does this really mean I likely won't feel up to working full time?

My students are 2nd year of a 2 year diploma program and I only have 11 but I hate to "abandon" them but I know I will likely ne off for a couple of weeks around the surgery & then possibly for treatment or adjusting drugs so unfortunately we can't find someone to teach law on an on call basis!

I realise everyone is different but I was looking for a ballpark figure in time around recovery. I still tire easily from the hysterectomy in May so I know this will also impact my recovery. Of course, If I could actually sleep through the night, that would help.

Anyway- I just want to go to work on Aug. 28 and forget all this but I know for the good of my students we will likely need another plan. I have found several sites through google and have learned that this is a "good cancer"- if there is such a beast but I have also seen that there is a process to be gone through to resolve it & that will take time.

I have strong prayer support around the world due to my husband's job with an organization that supports disadvantaged children so I will ask them to add anyone going through this stuff to their thoughts.

Thanks again to everyone, and i know I will have lots more questions.


Old 08-04-2006, 10:44 AM   #7
Senior Member
Join Date: May 2006
Location: northern virginia
Posts: 292
kwebster HB User
Re: Low Iodine Diet - and general update

I know it's a lot to digest! I actually had my surgery at a local hospital instead of Hopkins. I consulted them since my local surgeon had a long waiting list - but thankfully they were able to fit me in. Anyway, I would definately give yourself two solid weeks to recover from surgery. Afterwards - who knows how you feel. You'll be definately going to hypothyroid land if they want to do the I-131 treatment. I am able to work full time now - but have ups and downs as far as energy. Currently, my TSH level is 114 and I am ready for treatment. Some people feel terrible some people feel OK.

I have two small children so it is difficult to take them to waterparks, pools, activities, etc. I try to do small spurts. I am a school administrator so I understand the dilemma you have. But, overall the surgery wasn't bad - like I said before it was very difficult afterwards to regulate calcium, short acting thyroid meds,etc.

You know your body best. Take a look through all the info out there and of course keep in touch. I just had my whole body scan today and uptake scan. This lets the doctor know where thyroid cells still remain and how much radioactive stuff they need to give me to kill it all.

We'll see how it goes!

Stay positive!

Old 08-16-2006, 07:39 AM   #8
Senior Member
Join Date: Nov 2005
Location: Ontario Canada
Posts: 143
kathy590 HB User
Re: Low Iodine Diet - and general update

I am also in Canada, and I am wondering the same thing about the drive home after RAI. Mine is a 3 hour drive. You may not have to go hypo. When in Canada, you can continue to take your thyroxine and may be eligible for thyrogen which they inject twice. I am eligible for it, thankfully.

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