Low iodine diet.

Please can u help me... my dad has started low iodine diet ready for Radio active iodine treatment. Please can u tell us what milk and butter substitute to use as he is finding it really difficult missing his brews!! Any help will be appreciated xx

[Clutter]

Shellibob, I don't think your Dad needs to worry about the milk in his tea and butter. It's iodine rich food he needs to avoid. The only dietary change I made when prepping for RAI was to avoid all fish, seafood and seaweed.

google.co.uk/search?q=Low+i...

[Hidden in reply to Clutter]

Thank you so much! I will tell him he will be happy! X

[Hidden in reply to Clutter]

Hi Clutter, I was never told to avoid anything when I had mine done..on both.

The more I read, the more I realise how badly I've been treated and advised by the medical profession from day one. Do you think this was because it was 20 years ago?

xx

[Clutter in reply to Hidden]

Mango_555, I don't know how long a low iodine diet has been recommended prior to RAI but it is recommended now to improve uptake of iodine in the radioactive capsule.

[Hidden in reply to Clutter]

I really need to work on my time machine... Thanks Clutter it just confirms more and more how shoddily I have been treated... no wander I can't remember when I last had good health.

xxx

[Clutter in reply to Hidden]

Mango_555, you weren't treated shoddily if a low iodine diet wasn't recommended 20 years ago because the benefits weren't established then. Protocols and therapies change in light of new research and knowledge. Graves hyperthyroidism is treated more radically today than 40 years ago, and papillary thyCa is treated less radically today than a few years ago.

[Hidden in reply to Clutter]

Hi Clutter you are right, I was just sounding off. My treatment hasn't been good over the years and I had yet another shoddy response from my doctor the other day... I think she behaved the most unprofessional to date. I will be changing after my endo app and scan results are back. xxx Thank you.

[Girlscout2]

Hi there

Sorry to sound like the harbinger of doom, but why is your Dad having RAI? Is it following thyroid cancer? Or Graves disease? I had both, and in the end refused RAI, I had papilliary carcinoma, follicular variant, stage 1, totally encapsulated, not in the margins or lymph. The research (and actually the endo surgeon who removed my thyroid agreed) showed that there was no benefit in terms of life chances, recurrence etc with or without RAI. RAI is not without significant risk, so I opted not to do it. I dont' regret that choice one bit. My doctors are extremely supportive, my cancer markers are checked regularly (and have remained at zero) and I was told that I can 'change my mind at any time' so the option is always there.

If it's RAI for Graves, just wondering what other avenues have been tried to bring his thyroid disease under control? In my opinion, and this is just my opinion, many patients are rushed into permanent 'solutions' when in fact many do just fine on low dose antithyroid drugs (such as carbimazole).

Living with Graves disease and thyroid cancer is no picnic, as other patients will also tell you, but losing one's thyroid is no small matter and the ideas that endos push that 'hypO is easier to treat' or you 'just take a pill and you are fine' are - to most of us - laughable. Living without a thyroid - through surgery or RAI - is extremely difficult. RAI can exacerbate antibodies, so some Graves patients develop thyroid eye disease after RAI, and have other issues.

I'm not saying don't do it, but I am saying that anyone doing RAI must be extremely clear that it is really what they want to do, and they understand the implications - it's one heck of a thing to do to your body and in my view can just replace one set of problems with an equally serious different set of problems.

Sorry I know that's not the question you asked! But I looked up your profile and see you haven't posted any other information to the forum, so forgive me wading in.

Best wishes to you and your Dad,

Girlscout

x

[faith63 in reply to Girlscout2]

i agree 100 percent. There is another way out of this. This is autoimmune disease and once the triggers are removed, you can stop it and not just treat symptoms, like RAI.

[Girlscout2 in reply to faith63]

Thanks, I think sometimes Graves can be so uncontrollable that there is no other way out, or the cancer is aggressive and needs an equally aggressive treatment but firstly I think endos are too quick to rush patients through to permanent 'solutions' and secondly, I do agree, RAI and TT need to be the treatment of very last resort, and knowing what i know now, I wish I'd had the opportunity to do more to try and save my thyroid and calm my immune system before having to take irreversible action.

However, I thank my lucky stars I refused RAI for cancer. However, a friend of mine recently died of recurring, aggressive thyroid cancer, she was young, beautiful, bright, energetic, and multiple rounds of RAI gave her more years than she would have had without it. I didn't have that kind of cancer, and in my situation I believe RAI would have done more harm than good but for some it is necessary and I guess it's about weighing the risks vs benefits. As I had eye disease, I'm doubly thankful as RAI can really make TED much, much worse.

Unfortunately for me I was diagnosed so late I was a bit stuffed by that point, but if it had been caught earlier I'd have liked to try more with nutrition, and chiropractic, diet, LDN etc etc to try and calm it all down. My life will never ever be the same again now I have no thyroid, and I really wan't informed about or prepared for what I was letting myself in for.

The other thing with Graves, which I think is a question of ethics, is it effects every system in the body, it's all going too fast, including thoughts and feelings. Graves patients can be rash and impulsive and that's their disease. To rush someone into treatment (and Graves is such hell you are desperate for a WAY OUT, any way out) when their ability to make good decisions is compromised, is I feel, not right. It takes a long, long time for that sense of equilibrium to be restored, long after the patient is 'euthyroid' on paper, and I can't understand why there's such a hurry to whip people in, or this obsession with 'remission' either ... many people can stay on low dose anti thyroid drugs (ATDs) for years and years, I know some patients that took 2.5mg once a week or once every two weeks and they were fine.

Anyway, my tuppence worth, but I agree, it's autoimmune disease, the culprit is the immune system, the victim is the thyroid, removing or nuking the thyroid, doesn't actually solve the problem ... and creates more problems along with it.

GS

x

[Hidden]

Always wish I'd been better informed...

[Girlscout2 in reply to Hidden]

Me too ... hindsight is twenty twenty vision isn't it!?! I didn't do RAI but I did have a TT - I had no idea what was in store.

[Hidden]

Hello all.... He has thyroid cancer and lymph cancer... He has had 3 operations to remove it and goes in monday for his RIT... He hasn't liked the diet but needs must I suppose! Thank u so much for all your input.... In the middle of all this we have had the hurricane Desmond and the river burst it's banks so spent alot of time in the dark with no electric! But we are muddling through with it all... Thank u again to all of u for answering me xx