I’ve seen a lot of good advice on here about what diets to follow and what supplements to use but it doesn’t seem to be a one size fits all approach so I wonder if we could start a more detailed discussion about this?
For example, gluten free is often mentioned except it seems that for people not on levo, this can inhibit uptake of vitamin D.
It’s also often mentioned that we shouldn’t supplement iodine, however, this seems to only apply to people on levo, as levo replaces the iodine and further supplementation would create an excess which is not good for thyroid problems. So presumably those of us who are not on any kind of medication would benefit from iodine supplements?
Fish is supposed to be good but not tuna. Vegetables are good but not cauliflower or broccoli. Dairy free is good but avoid all soy.
It’s incredibly difficult to work out what is and isn’t good and you have to really read the research carefully to see if the results are actually conclusive and apply to people on levo or people not on any meds.
There’s no point taking a whole load of supplements that counteract each other.
So, how do we work out what diet to follow, without having access to professionals who actually have knowledge of the effects of thyroid conditions?
it is important to test key vitamins (ferritin, folate, B12 and vitamin D) prior to supplementing Sams127. Multivitamins are not recommended here, due to fillers and general poor quality. Iodine is not recommended unless you have tested levels and are found to be deficient.
So presumably those of us who are not on any kind of medication would benefit from iodine supplements?
No! Iodine should only be taken if you have been tested and found to be deficient. I took it when I was not deficient and it was the start of all my thyroid problems. I did not have a thyroid problem until I took iodine - there is no history of thyroid problems in my family and I do not have either of the autoimmune thyroid diseases.
I learned from this that the only supplements you should take are ones that you are deficient in. That means testing for the deficiency and supplementing only those individual vitamins and elements.
Gluten free/dairy free does not suit everyone. There are folks on here who are not gluten free or dairy free. the reason that it is suggested is that folks whose bodies are out of kilter can develop food sensitivities and gluten and dairy tend to be the main ones. There is no point in going gluten or dairy free if you don't feel an improvement in symptoms and well being. When folks are trying to get well it is another thing to try.
Diet there is nothing to avoid in moderation apart from perhaps soy. Soy is shown scientifically to block the uptake of thyroid hormones. It is not clear exactly how much soy you would need to ingest for it to have an effect so the odd sweet and sour or sushi with soy may not have an effect but replacing cow's milk with soy milk might.
To find out what you need by way of supplements you have blood tests and supplement those things in which you are deficient. You post symptoms on here and those who have had experience of similar will discuss what helped them and you can try that.
You eat a normal diet perhaps avoiding soy BUT if you get bloating try being gluten free. If you feel ill after eating or drinking certain thins keep a food diary and perhaps try eliminating 1 thing at a time for a while to see if things improve.
We have to live with our thyroid problem and its symptoms but personally I see no point in having a restrictive diet or routine if it is not necessary. For example you will see suggested on here that doses of liothyronine T3 are split to 3 times daily. I tried it and it didn't suit my daily routine (the afternoon dose clashed with tea and cake and supplements) so I tried dosing morning and bedtime and felt just as well - others on here feel better if they dose once daily). On the other hand I feel ill if I take my levothyroxine in one daily dose - always have - so my levo dose has always been split morning and night.
"Soy is shown scientifically to block the uptake of thyroid hormones." Do you have links to studies please? I use a lot of soy and the studies I've seen suggest that the effects are so miniscule that you'd have to consume a huge amount of soy for this to have any effect?
"You post symptoms on here and those who have had experience of similar will discuss what helped them and you can try that." I was kind of hoping for a more robust method... 😂
I've seen suggest that the effects are so miniscule that you'd have to consume a huge amount of soy for this to have any effect?
A miniscule effect might not bother someone who isn't hypo. But, if you are hypo, and cannot regulate your hormone levels automatically, even the slightest impedement to absorption can have an effect.
And, anyway, what is a 'huge amount'? I don't trust people that use this kind of generalisation without giving any idea what sort of quantities they're talking about. It usually means that they don't really know what they're talking about.
This is why I said you have to read the research very carefully. There is currently very little that I can find and the most recent studies suggest that there is no evidence that soy increases the overt thyroid failure rate or alters thyroid function tests in patients with subclinical hypothyroidism?
the most recent studies suggest that there is no evidence that soy increases the overt thyroid failure rate or alters thyroid function tests in patients with subclinical hypothyroidism?
Well, there wouldn't be, would there. But, I think that's entirely missing the point I was making.
I never said that soy increased thyroid failure. Because it doesn't - although there is evidence that babies fed on soy formula usually end up hypo in adulthood.
And, it wouldn't alter test results because test results don't tell you how much thyroid hormone is getting into the cells. A blood test just does what it says on the tin: tells you how much of something is in the blood. So, neither of those are valid points in the case against soy.
I don't get the impression that you understand the research I was referring but perhaps you could explain why there would be no change when you're convinced that soy has a negative effect on thyroid function? And this site has endless posts on test results which you're now saying are completely worthless???
Well, it depends what effect you're referring to. I explained how goitrogens work, but that you would have to eat a hell of a lot of them to have that effect. The average person wouldn't eat that much. The problem with soy is that it affects absorption of thyroid hormone at the cellular level.
When did I say that tests were worthless? They are a rough guide, where thyroid is concerned, but worth doing all the same to back up symptoms. However, how you feel is much more important.
What I said was that soy affecting the absorption of thyroid hormone at a cellular level would not show up on blood tests because blood tests cannot show how much hormone is getting into the cells. That seems logical to me. But, I don't think you are understanding anything I'm saying.
As to understanding the research you're referring to, how the hell am I supposed to know which research you're referring to when you don't give any sort of indication - much less a link to said research.
"The chances of having a high TSH were quadrupled in those who ate, on average, just under two servings a day [of soy foods] compared to those who didn't eat any,"
And many other similar research links
Personally I had noticeable improvement cutting all soya out
For example, gluten free is often mentioned except it seems that for people not on levo, this can inhibit uptake of vitamin D.
I've never heard this said. And I can't see the connection between gluten, levo and vit D. Are you sure you've got that right? Low-fat diets can inhibit uptake of vit D, but I've never heard that gluten can. And, where does the levo come in?
Vegetables are good but not cauliflower or broccoli.
Ah ha! The old goitrogen myth! It's usually Brussel sprouts that are singled out as being the bad guys. But, in reality, the list of goitrogens is rather long, including things like onions, strawberries, pears and almonds and walnuts. If we cut them all out, our diets would be very, very limited.
The truth of it is that goitrogens contain a substance - can't remember the name - that impedes the uptake of iodine by the thyroid. And that causes a goitre - hence the name - as the thyroid enlarges to trap more iodine. But what they never tell you is that you'd have to eat an enormous amount of them - like cabbage soup every day, three times a day, for years - for the iodine deficiency to get that bad.
They also don't tell you that this would only be a problem for people not on thyroid hormone replacement. If you are on thyroid hormone replacement, your thyroid won't be making any hormone, so doesn't need iodine. Goitrogens don't have any effect on exogenous thyroid hormone.
The exception to that is soy. Soy is not only a goitrogen in the normal sense of the word, but also impedes the uptake of thyroid hormone at a cellular level. So, that's the problem for hypos, as out-lined above.
There’s no point taking a whole load of supplements that counteract each other.
Which is why we are anti-multi-vit. Some supplements need to be separated from others for maximum absorption. Iron, for example, needs to be taken two hours away from everything else except vit C, which - paradoxically - helps with absorption and avoids constipation.
Another example is B12 and vit C. Whilst vit C is essentail when taking iron, it can have a negative effect on the way the body uses vit B12. So, they should be taken at least two hours apart.
So, how do we work out what diet to follow, without having access to professionals who actually have knowledge of the effects of thyroid conditions?
So, don't follow diets. I am very anti-diet. I don't like people telling me what I can and can't eat. I believe in 'all things in moderation', and 'a little of what you fancy does you good'. Eat fresh, nutritious food - if it agrees with you. If you suspect that something doesn't agree with you, cut it out. Eat things you like, not because it's supposed to be good for you. I think that forcing yourself to eat something you don't like is far from good for you. The psychological factor is also important. But, it's a very good idea to avoid processed foods, for three reasons: artificial sweeteners, highly processed seed oils, and various forms of soy. Processed foods are packed with them, and none of them are good for anybody, hypo or not.
I don't believe their are any 'professionals' with knowledge of the effects of food on thyroid. You would not believe the nutritional 'advice' I've been given by some of these so-called 'professionals': fat-free diets (very dangerous, the body needs fat), eat only vegetable soup (hence no protein - and without a trace of fat, of course!), drink soy milk (we've already discussed that), and, my favourite, eat only boiled carrots and rice!!! If I'd taken any of that advice I'd probably be dead by now!
As for reading the research, the problem is knowing which research you can trust. Research told us fat was bad for us, now they admit it isn't, it's necessary. Then it was the turn of salt, and the same thing happened. Some research is unscientific, some is badly done, and some it all depends who's doing it and what axes they have to grind. And, I don't really think that anyone has ever really done any research into what hypos should eat and what they shouldn't. So, we have to just use our common sense.
Re GF inhibiting vitamin D uptake (in patients not on levo), there's a post on this on here based on a study.
There is also research suggesting that 'goitrogens' affect the thyroid.
Interesting about multi-vitamins, I was taking iron, zinc, B6+12, and magnesium before but switched to multi-vitamins since the goitre was diagnosed and feel much better on them. Just shows how individual we are, I guess.
Also, I'm not talking about fad diets, the word diet simply means what we eat 😀
Re GF inhibiting vitamin D uptake (in patients not on levo), there's a post on this on here based on a study.
This is a huge forum, with many thousands of posts. I don't recall reading the one you are referring to. Could you possibly give a link?
There is also research suggesting that 'goitrogens' affect the thyroid.
Well, of course they 'affect the thyroid'. No-one is denying that. But, not to the extent that anyone needs to avoid them completely. And, certainly not when on thyroid hormone replacement because you're not using your thyroid anymore. It has gone to sleep!
Interesting about multi-vitamins, I was taking iron, zinc, B6+12, and magnesium before but switched to multi-vitamins since the goitre was diagnosed and feel much better on them. Just shows how individual we are, I guess.
No, it doesn't show anything of the sort. It shows that you were absorbing something out of the multi-vit, and it was something you needed, but no way of telling what it was. And the point is, why pay for all those things you didn't absorb and/or didn't need? That is a total waste of money.
Also, I'm not talking about fad diets, the word diet simply means what we eat
I do know what the word 'diet' means, thank you very much. But you said: So, how do we work out what diet to follow which implies that you were talking about a set eating plan devised by someone else. Otherwise, one could have said simply 'how do we work out what to eat'.
Look, you said you wanted to discuss diet and supplements, but it seems you already have your mind made up about it all. So, I don't see much point in persuing this. Good luck!
I should probably mention that I'm currently doing a PhD at a very good med school. I'm quite capable of assessing medical studies.
I'm sorry that you find me asking questions difficult to deal with and are being ultra focused on the way I worded my question. Thanks for making me too scared to ask further question in case this is the response I get every time.
Sams127, this is a peer to peer forum. There are a few people here with medical qualifications and experience in reading research etc but most of us are just ordinary folk trying to feel well again and sharing whatever we find works for us. As we’re all different I believe there isn’t actually a one size fits all solution though. Especially when it comes to diet. I think it might eventually prove to be the biggest myth of all—that there’s one diet or way of eating that’s optimally healthy for everyone.
I’m really glad that you have the ability to really get into medical studies—that should really help you figure out a good way forward.
I am intrigued by the comment about being gluten-free being an issue when it comes to update of Vitamin D—if you could find the post with the study in I’d be very interested to see it (yes, I’m gluten free and have been for many years now—even the smallest amount of gluten leaves me with horrendous gut issues).
Hi Jazz, yeah, I do forget that most people here probably haven't dug into the research as much as I have by now, or might not have access to a lot of studies.
But you weren't asking questions you were just trying to prove everything I said was wrong, without actually giving any proof. I'm perfectly happy to answer questions if they're asked. And I'm not ultra-focused on anything. I just explained why I answered the way I did because of the way I understood your question. That's all. No need to read something into it that isn't there.
Sorry greygoose but I WAS just asking questions. It seems you didn't like that I questioned what you said because not everything was in line with the research I've seen. I think it's very important to listen to people with lived experience but we also mustn't totally dismiss research which is after all being done by professionals with knowledge of the subject and very rigorous checks at every stage to avoid any kind of researcher bias.
I wish I had your faith in research and researchers. But I don't. (Neither do a lot of researchers. Try reading on diogenes threads.) I've done a lot of reading, too, and have enough experience to sort the chaff from the wheat, plus lived experience of all this.
And I still maintain that you weren't questioning me at all. Just out-right telling me I was wrong on every point. Well, that's fine if that's what you think and want to live by. But don't try and guilt-trip me by saying I've made you afraid to ask any more questions. If it comes to that, you've made me reluctant to answer anymore questions from anybody - questions that actually look like questions, that is.
Also, laughing at someone because you don't think they know what a word means just isn't on. It's rude.
I think you're seriously misinterpreting what I said. We're all here for the same reason. If I had to guess, I'd suspect you're annoyed that someone questioned things you presented as facts but it's really not worth continuing this conversation.
You're certainly right there. But, no, I'm not annoyed that you're questioning what I've said. I'm annoyed that YOU misinterpreted everything I said and twisted my words, saying I said things - like blood tests are worthless! - that I never said. So, end of 'conversation' - if conversation it was.
Yeah, I was pretty certain that you wouldn't be able to leave it be. You have to have the last word to prove you're right, don't you? And it's not your fault, it's always the other person... so entirely predictable 😂
Well, I'll tell you one thing, you're not going to get anywhere by trying to gaslight me. I'm totally resistant to that. I don't know what game you're playing here, but you're wasting your time.
I'm not wasting my time at all, your responses are so textbook. Right down to the language you chose. Utterly fascinating, please keep it going. 👍
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Goodness. I'm sure that its not your intent but as an outsider reading this you're coming across as a bit of a bully here.
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Oh goodness, that was not my intention. Perhaps you could explain why me questioning the incomplete / incorrect information that some people have presented as factual in this thread makes me look like a "bully"?
I didn't realise we weren't allowed to question things on here, or have a different opinion than certain people on here.
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Oh, behave. It's got nothing to do with questioning any thing or having different opinions. As you know, fine well.
You are taunting, patronising, and insulting another member. It's unpleasant to watch.
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Has it occurred to you that that's YOUR perception? That perhaps I'm genuinely puzzled by why you'd perceive me as a 'bully' because I really don't want to offend people?
Instead of considering that, you judge me, insult me, patronise me, dismiss me and ironically, bully me. Have you considered how much pain that might cause me? I'm guessing not because you appear to be unable to consider how things might look from someone else's perspective. 😥
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Your responses are so textbook. Right down to the language you chose. Utterly fascinating, please keep it going. 👍
Sams127 i resisted writing this yesterday ,,, but i no longer can ... GROW UP.
"questioning the incomplete / incorrect information that some people have presented as factual in this thread"
as i asked you yesterday ... please be specific ,what is it that you think is incorrect / incomplete /has been dismissed, so we know what you are talking about.... that is the only way to have a sensible conversation about 'whatever it is' you want to discuss.
your responses to members so far give the impression of a squabbling toddler.
very difficult to support you unless you say what , specifically, it is you think is incorrect / incomplete , or has been dismissed ? I can't support a string of picky replies with no detail of what it is you want to discuss.
But nevertheless you feel it's ok to call me names...
Here's one example. The reply to my statement is at best ill considered, and at worst potentially harmful.
" My statement: Interesting about multi-vitamins, I was taking iron, zinc, B6+12, and magnesium before but switched to multi-vitamins since the goitre was diagnosed and feel much better on them. Just shows how individual we are, I guess.
Greygoose: No, it doesn't show anything of the sort. It shows that you were absorbing something out of the multi-vit, and it was something you needed, but no way of telling what it was. And the point is, why pay for all those things you didn't absorb and/or didn't need? That is a total waste of money."
"but we also mustn't totally dismiss research which is after all being done by professionals with knowledge of the subject and very rigorous checks at every stage to avoid any kind of researcher bias."
are you not aware of the PACE trial ? ....That is just one fairly extreme example , but everybody needs to look at all research with a wary eye until thy have satisfied themselves that it was done well .... not all research is done well , and yet it still get's published ..... not all research in unbiased, and yet it still gets published .. students in particular need to be very aware of this reality, if they are not to blindly accept everything they are 'fed' .
I see that I need to be A LOT more specific in this group, so please allow me to reword my previous statement.
"but we also mustn't totally dismiss quality research which is after all being done by professionals with knowledge of the subject, high ethical standards and very rigorous checks at every stage to avoid any kind of researcher bias."
It's very easy to weed out research that doesn't meet these criteria and I was not referring to studies with poor quality methodologies etc. As I said, apparently more detailed and specific language is needed in this group, I shall endeavour to remember that in future posts.
If we weren't so keen on specifics / accuracy /and providing credible references, this group wouldn't be as much use as it is .. it would be just another " Me and My Hashi's" emotional support site .
Accuracy in language and specifics is especially important in short written text form, such as a forum , where we don't have any other knowledge of who we are talking to of their current opinions ,... in this setting , the omission or addition of a single word can be extremely important to avoid misunderstandings .
ie: your original sentence could be interpreted that you thought ALL research was to be taken at face value, .. some people come here believing this, so it's necessary to check.
I didn't expect one. But if you want to be more than a support site, you need to be prepared to consider all sources of information, and be able to justify why you're totally dismissing some papers or lived experience accounts. It's this black and white thinking I find difficult, that's not how research and knowledge move forward.
haven't followed very closely , but which papers or lived experience accounts have been totally dismissed without justification ? .... i don't think i have dismissed any .
We use this forum to find help to improve out health having been diagnosed with a thyroid disease , I include all reasons for that diagnosis.
I for one , and I’m sure many others who use forum, read and digest that which is posted with an open mind . We know, or soon realise how different we are when it comes to what we consume . I talk here about food , medicine , hormone treatment etc.
That which works for us, post that info, and we as adults take away and try, test on ourselves . This is where research comes in because in practice we are all very different in how we react to anything we ingest !
Hi Gcart, this is exactly the reason I was asking the questions, there is a lot of contradicting information out there. However, it seems that some people who probably have been on this site for a long time think they know all there is to know, and how dare you ask then to back up or clarify what they're saying. Some of the points that have been made in this thread are presented as 'facts', yet critical parts of the research have been omitted. I'm very interested in hearing about peoples' lived experience, as you say, we're all different but when incorrect or incomplete information is presented as factual, it can cause a lot of problems for people on a forum like this, who take everything that's said here as the truth.
I must say that info posted on here has never been written in a dogmatic way claiming it to be absolute. The research papers address is always given so that it can be read by anyone interested in the particular subject . We are sometimes reminded that we are a peer to peer group and I don’t remember anyone claiming superior knowledge over anyone.
I find the his particular forum extremely careful in what is posted ! Always well mannered , kind and inclusive .
I feel the whole point of peer support is to be able to learn from others lived experience. Some of the members in this group have been where most of us are when we find the group. I for one am very grateful for the advice and for the time that others take to help. I can't bear to think how terrible I would still be feeling if I hadn't found this group. Noone claims to have medical knowledge, they only know what works for them. It's up to us as individuals to choose whether to follow advice or not. People aren't obliged to give advice. They do it to try and help!! Also just my opinion.
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