[cathycnm]

#1072462

Sharie – My understanding of LID (low iodine diets) is that they are primarily used before scans or treatments with radioactive iodine. In a sense this is to starve the thyroid so it wants to uptake as much of the radioactive material as possible during the scan/treatment. My endo is old school and had me on the LID for 2 weeks prior to my scan (yes, no milk but I got sort of attached to the coconut milk in cans!). It was hard – my daughter found a great cookbook for LID and we did have to shop totally differently. I had the scan and was at 37% on the uptake – I saw my endo the day of the scan and he said he required 2 weeks of LID before treatment, too, so if I stayed on the diet, I could get the treatment the next week. So – more bananas and salt free almond butter for lunch (actually, tastey). Then – he had me stay on it 5 more days after treatment. My daughter and I laugh that the diet must have worked cause I was way hypo 5 weeks later!!!

I learned a lot from the cookbook – it was mostly for those with thyroid cancer, when dosing is important and so the LID is essential. From this board – I don’t think it is that routine to require LID before scans and RAI for Graves. I have not heard of it for just routine treatment of hyperthyroidism. Good luck – let us know how it goes and if you have the money – the cookbook is a good investment if your endo requires this. The recepies are good enough that I still use them. Lots of fresh fruits, veggies, no-salt nuts, no-salt meats – I was so hungry for cheese after a month, though!!!! First meal post diet was cheese-filled!

[SharieS]

#1019557

I find the information on dietary iodine and hyperthyroidism confusing. Am I supposed to be on a special, low iodine diet while I’m in the hyper stage? I have stopped eating shellfish, iodized salt, seaweed (sushi) and limiting my fish intake to once per week. Is this enough? I have heard of people not drinking milk, or eating dairy, and I would have such a hard time with that. If I am supposed to reduce my intake of all these foods, is that for the rest of my life…..or only while I’m hyperthyroid? I tried to ask my Dr. but he was so busy I didn’t really get an answer. Oh…. is Himalayan salt ok? I live in Canada and it is hard to find just plain non-iodized salt. I have been to 4 large grocery stores and they don’t have it! I was using sea salt with no additives until I heard that it contains natural iodine. ” title=”Confused” />

[Ski]

#1072463

For the most part, dietary iodine is of such small consequence in our diet that it’s not something you need to limit while hyperthyroid, but as Cathy says, some doctors require it prior to a scan or RAI. Some do not. The only exception I know of is seaweed, because there is SO much iodine that it can affect a hyperthyroid patient, so it is not a good idea while hyperthyroid. Once levels are normalized (and stable) you would want to proceed cautiously with seaweed. If your thyroid is removed (through RAI or surgery), or if you go hypothyroid naturally over time (in other words, your thyroid no longer functions), there ought to be no reason to limit iodine intake.

[honeybee99]

#1072464

Hello everyone ” title=”Smile” /> my name is honeybee. In my search for info on "dietary iodine and Graves’ disease", I was lead to this page.

I was diagnosed 14 years ago with Graves’ but unknowingly had been symptomatic for a few years prior. By the time I was diagnosed, I was pretty ill with it – – to the point where I was actually starting to gain, rather than lose weight. My pulse crested to 140/min., and at one point I’d had a thyroid storm so severe it shut down my kidneys. I had developed a pronounced case of exophthalmos, among other things. My ablation took place about 2 years following my diagnosis. It was a long way back, but I am doing pretty well now. Am still having to watch or eliminate my intake of a lot of things, like sugar, caffeine, chocolate, and alcohol. If I don’t get enough sleep, my eyes get swollen and/or poppy-looking (warm/cold compresses really help a lot, though. Brings the swelling down pretty quickly.). Drinking enough water is a big help, too.

But even now, I am still learning about what I really shouldn’t be doing. The latest challenge is trying to figure out how any extra iodine in my food is affecting me, especially since I am now more than likely in peri-menopause. I’ve never been one to salt my food, and have pretty much avoided really salty and processed stuffs, because I just don’t care for it. I too was under the impression that any iodine in my food didn’t matter, so I ignored it. Well, after all this time, my latest blood tests came back with my TSH low (near zero), and T4 at the upper end of normal. I had been having rheumatic-type pains and carpal tunnel-like symptoms in my hands, feet, and limbs, GI symptoms, sinus issues, etc. My Dr. was puzzled as was I. All my other routine blood tests looked good. When I got home, I took another look at the foods and supplements I was taking.

As it turns out, the multivitimin I had been taking for a couple years has 150 mcg. of iodine in it, so I switched to another. I also love dairy foods, and have only just learned online today that they are also sky-high with iodine. All my life I’ve been eating tons and tons of dairys, and they’d never interfered before (or at least, not since after my ablation). I’ve been taking a fairly high dosage (over 100 mcg.) of levothyroxine, as it was intended to be a replacement for no longer having a thyroid. Even so, in my case the extra iodines could be upping my T4 and suppressing the TSH. I’ve started taking a chewable calcium supplement to make up for what I will now not be getting from my beloved dairys. If switching vitamins and cutting back on the dairy foods doesn’t do the trick, my Dr. will probably lower my dosage, as too much of the levothyroxine could cause osteoporosis. Lord knows I don’t need that on top of the Graves’!!

Anyway – I agree with Ski that most people who have had ablations probably don’t have to worry about dietary iodine. But if some of you out there are still having a difficult time titering to your dosage – – whether you feel hypo, or still hyper – – you might wish to consider with your doctor how much iodine is actually in your diet, and take that into consideration along with the rest of your treatment. Apparently some foods can have high sodium, but low iodine, and vice-versa.

………………………………………………………..

To any who have been newly diagnosed, please hang in there! Find out all you can on Graves’, keep asking questions, and do try to get it under control asap. I know personally how very painful physically and emotionally it can be. But you can learn to live with it, if not beat it outright. There’s lots of issues doctors may not be able to (or want to) get into detail with us about, like how we ought to eat, what kind of exercise, etc. to get. There’s a lot of personal decisions which have to be made. One thing this condition has done in my life was that it compelled me to get to know my body better, because I just can’t get everything I need to know about staying healthy from my doctor. Graves’ is a complex disease, and it damn near killed me. Everyone is different, and it can affect you in so many ways. And how Graves affects you can also change over time. But there are some aspects of it that do impact us all commonly.

This turned out to be much too long a post my apologies…

But good to meet you all ” title=”Very Happy” /> and I look forward to chatting with you!

Have a good weekend,

honeybee ” title=”Smile” />

[SharieS]

#1072465

Thank you all, I sure appreciate your feedback.

I am learning to cope with all the things Graves Disease throws at me, but giving up so much food has been particularly difficult (especially the sushi). I will continue to hold off on some of these foods until I’m no longer in the hyper stage. I’m glad to hear that a LID is not required. I’ve decided to just go the ATD route for now…. for the next 18 months anyway (a little scared of RAI and surgery).

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