I have papillary carcioma, and have to start a low-iodine diet while being off my thyroid hormone in preparation for radioactive iodine ablation. Is there any advice any of you that have gone through this could provide with regards to nutrition (or anything else)? Thanks in advance.
I just went through this recently. I had an MRI done on my neck in February for a cervical disc problem and they discovered a large mass on my thyroid that turned out to be papillary carcinoma. I was blown away, because I take such good care of myself that cancer is about the last thing I expected to hear. Anyway, you should be 100% fine once it's removed. I had my entire thyroid removed in March and then took the radioactive iodine as a precautionary follow-up a few weeks later.
I followed the low-iodine diet for two weeks before the iodine treatment. It wasn't bad at all. I ignored the part about 3-oz portions of meat and just filled up on meat and veggies. I even ate steak for breakfast! I actually started losing some of the chub I gained post-surgery when they weren't allowing me to lift at all, and my strength has been rapidly improving after all this.
One thing that sucked was having to go off the replacement thyroid before the treatment. My surgeon had me on Cytomel (T3), which clears the bloodstream quickly, and I was able to keep taking it, just at a lower dose, up until just 2 days or so before taking the iodine. Believe me it helped, I felt like tired as hell even on a lower dose. If I had been taken off completely, I probably would have had to stay in bed those two weeks. But that is just me. You may be less sensitive to thyroid hormone levels. But, the important thing is you'll be fine long-term. As far as cancers go, papillary carcinoma is probably one of the best ones you can have.
Anyway, PM me if you have specific questions. I'll be glad to help if I can.
"Hyperthyroidism can be persistent and difficult to treat. It comes on either very suddenly or very gradually-so gradually, you might not even notice that something is really wrong until the symptoms become severe. Graves? disease is one of the common names for hyperthyroidism. In this condition, the immune system disrupts the functioning of the thyroid gland, causing it to become enlarged and to secrete too much hormone.
Mainstream treatments completely shut down the production of thyroid hormone using dangerous patent medicines. But lithium can get to the root of the problem much more safely.
In 1972, Mayo Clinic researchers published the first clinical investigation of lithium treatment for Graves? disease.9 Using high-dose lithium for 10 individuals, they reported that thyroid hormone levels fell by 20-30 percent within five days.
Twenty-six years later, in a review of more than 10 successful trials of lithium therapy for Graves? disease, the authors wrote: ?a small number of studies have documented its [lithium's] use in the treatment of patients with Graves? disease? it?s efficacy and utility as an alternative anti-thyroid [treatment] are not widely recognized??10 They also note lithium?s rapid effect: ?Lithium normalizes [thyroid hormone] levels in one to two weeks?? But they also caution that ?toxicity precludes its use as a first-line or long-term therapeutic agent.? If they?d just added flaxseed oil and vitamin E to their treatment, they would have basically eliminated the risk of toxicity."
SuperFast, I think you are not understanding, the OP HAS cancer, now. The prevention ship has sailed, but interesting link.
JM, you won the cancer lottery, LOL. If it hasn't spread, and it spreads really slowly, you'll come out fine. Bob Parr there did well and he is right back to normal now. Are you having the mass removed or just killed off with the radiation?
Thanks for the replies. I completely understand how lucky I am to be suffering from this form of cancer compared to almost any other type.
Currently, my current diet is about 12-18 egg whites fried in avocado oil, olive oil, avocados, peppers, carrots, peas, grapes, apples, berries, natural salt free peanut butter, and home made bread. I must admit I really miss whole eggs and grass fed milk!
BobParr, what did you lower your Cytomel dosage to? I was on 50 mg but my oncologist took me off it completely while I'm prepping for the radioactive iodine. I'm starting my fourth day off, and I only feel tired at the end of the day so far, being able to complete somewhat intense workouts before the fatigue hits. I assume that you are on Synthroid now. How are you responding to this. I've read quite a few stories of chronic fatigue while using this.
SuperFast, thanks for the link. I have noted in my research that Vitamin D levels are important to many aspects of the treatment including fatigue levels, so I definitely plan on discussing this with my oncologist.
Dianab, I had a total thyroidectomy on May 10, and am having the radioactive iodine treatment as a pseudo-cleanup procedure to try to kill of anything that may be left behind or migrated.
My Cytomel dose was backed off by 2/3 up until about 2 days before taking the iodine. My surgeon originally put me on 50 mcg Cytomel, same as you, but I felt like shit. Exhausted all day except for a few hours in the morning. Even worse was this mental fog/confusion I was experiencing. I had to slog through it for a couple of weeks and then my blood work showed my TSH levels through the roof, so the surgeon agreed 50 mcg was nowhere near enough for me, and raised me first to 100 and then to 150 mcg. On 150 mcg I felt like my old self again.
Well, when I met the endocrinologist referred by my surgeon, the first thing I told him was that I was going to be useless during the low-iodine diet phase if I go off Cytomel completely. He was surprised I was not experiencing hyper-thyroid symptoms on 150 mcg (he said that's the max dose), but I wasn't. No rapid heartbeat, no hand shaking, no trouble sleeping. So, anyway, he backed me back down to 50 mcg. Like I said, I was exhausted, but I'm sure it would have been worse with nothing in me at all.
You may not feel as terrible as I did on a low to no-dose of Cytomel, so you may do fine for a couple of weeks on 0. I think it all depends on the individual. But if you do feel like shit, tell the doc about my experience and how a lower dose was still OK.
The main thing they look for before they give you the radioactive iodine is that you have a very high TSH level (i.e., you body is starved for thyroid hormone) right before you get the radioactive iodine treatment. I was warned that if my TSH level wasn't high enough a few days out, it would delay me getting the treatment and I would also have to go off the Cytomel. Well, in my case, it all worked out fine.
Also, as DianaB pointed out, I AM back to normal! I just take Levoxyl (aka Synthroid) now, 175 mcg. At first that dose was too low, but I somehow adjusted and feel normal energy levels. I'm also getting leaner and just hit some new PRs in the squat and deadlift, so all is good.
I figure the scar makes me look tougher, too. Like I won a knife fight despite getting my throat slit, LOL.
BTW, one piece of advice about thyroid medicine no one told me about initially... Take it on an empty stomach. I.e. wait at least 30 minutes, and preferably 45, before you eat breakfast. Second, if they have you taking Calcium (my parathyroid was temporarily affected by the surgery), then make sure you take your calcium at a different time of day. Calcium will interfere with the absorption of the replacement thyroid hormone.
Best of luck to you. You'll pull through this and be fine.
I just wanted to close this thread out. I took the radioactive iodine yesterday. The initial scan showed that the thyroid tissue does not appear to have moved out of the neck region. What a huge relief. The pathology after my surgery showed that the tumor had invaded the thyroid capsule, which I guess is an area of a lot of vasculature. This kind of worried me a bit, so I wanted to ensure this treatment was as effective as possible. I was very strict with my diet, avoiding anything that could even be considered borderline in iodine content like spinach and strawberries.
After being off Cytomel for 2 weeks and on the low-iodine diet, my TSH reached 148, and my T3 was at 0.09. Despite this, I was able to keep up with CT's High Performance Mass routine with nearly the same intensity. This shocked the hell out of me! I've actually also lost a lot of bodyfat during this two week period. I guess we are all really like snowflakes!
Thanks again to the three of you that responded to my original post.