Shocked on the dietry advice given in the literature on hypothyroidism :(

I have had hypothyrodism for several years and over time have symptoms which aren't eleviated by the thyroxine. My GP states my blood results are 'within range', therefore I researched on recommended thyroid health diets. To be honest it made me rather depressed on all the food/drink restrictions recommended. With Coffee, tea, most veg, fruit juice, all gluten, all dairy and most nuts being forbidden... What am I supposed to eat which tastes at all decent? Any help from people who've taken this drastic diet advice would be appreciated and if they have felt a big difference. I mostly eat a healthy diet, and enjoy the odd good coffee, it seems even healthy foods are bad for us :((

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  • The list you've given is (as far as I can tell) a list of things that some people have given up and found to be helpful for them personally.

    I doubt everyone has given up all of them.

    And if giving up something confers no benefit on your health, you should start eating it again.

    You would have to prise my morning coffee out of my cold, dead hands to be honest. The only thing I've given up is gluten.

  • Thanks! Did giving up gluten help with your symptoms and if so, which symptoms were you getting. Appreciate the advice.

  • I was "officially" tested for coeliac disease back in 2010 with an endoscopy, biopsies from the stomach/gut, and blood tests. Everything came back negative.

    As a result of this I continued to eat gluten-containing foods for another 5 years.

    At the beginning of 2015 I decided (very, very reluctantly, kicking and screaming all the way) to try going gluten-free as an experiment. I expected the experiment to be a total failure and a complete waste of my time.

    After about 5 days of being gluten-free it suddenly dawned on me that my temper had improved dramatically.

    I'd been finding it harder and harder for years to maintain a hold on my temper. In fact I was quite scared by my own reactions to some quite innocuous situations. Most of the time my temper problem seemed to have little or nothing causing it, and so to feel that I wanted to punch people for trivial reasons was very scary.

    Since giving up gluten I have only noticed a problem with my temper when I accidentally get "glutened". Under normal circumstances now, my temper is completely under control.

    Another thing I had problems with, and had done for several years, is staggering. My balance is very, very poor. Giving up gluten did allow me to recover to some extent, and in daylight I'm now usually fine. But I still can't do the kind of things that drivers get tested for in the US when they are believed to be drunk. I also can't keep my balance when it is dark or I'm walking in a confined space. I have a tendency to bounce off walls.

    The condition I appear to suffer from is gluten ataxia, a condition I'd never heard of until after I gave up gluten.

    glutendude.com/celiac/insta...

    glutendude.com/celiac/what-...

    In the second link, the person describing his symptoms is much, much, much worse than I've ever been, but it gives an idea of how bad gluten ataxia can be if left untreated for a very long time.

  • I think you have to take the bits you can manage. I'm not giving a daily cup of coffee or tea because *I* feel there are health benefits to both drinks. Fruit juice I can drop but giving up say, tomatoes is hard as I use a lot of tomatoes and red peppers for example.

    Gluten free is easy but I got well and truly tripped up tonight by eating some baked beans that were not gluten free and bnow I'm thinking "I've just buggered that up then, haven't I?".

    I know how you feel, it's like an insurmountable mountain to climb and we have authors of these diets that claim to have gone into remission - so you feel the guilt if you don't try as hard as these amazing people.

    The best advice is to get all your test results back from the GP and see if they're really "normal". My TSH was 3.6 and "normal" but if you're hypo, it needs to around 1 or less. Let's look at what's really going on before drastic diet changes. x

  • Thanks! My GP's tone is that I'm being rather hypochondriac and claims most patients with the condition manage well with the meds. I was taken a lot more seriously when I lived in the United States for a while.

  • Oh yes, I've been gas lighted by a few GPs(my new go-to-phrase - very apt for most GPs...). Your GP is an asshat.

  • Excellent phrases Bombus...can foresee many uses! :-D

  • twinmommy yes, most patients probably do manage well w the meds but that is hardly relevant to you as you are *not* doing well. Honestly. It's like when you return something to a shop because there's something wrong w it and they say they've never had any complaints before. What does that have to do w anything, you know?

  • (punctured, I'm sure I saw you use the term "gas light". If it was you - thanks!)

    Yep, exactly! It's a useless thing to say to someone.

  • I seem to remember a thread where it was mentioned though I can't remember if I was responsible. :-)

    I do like the phrase 'red herring' which is also perfectly applicable. :-)

  • I totally agree, but would also add that I suspect Gp's say 'most people' do well on t4, but that is only because that is what they want us 'abnormal' thyroid people to believe! How can we possibly be complaining when so many others are ok...??? I'd like to know who these 'normal' people are because I have come across lots of people struggling with thyroid problems and I know of only one who finds that t4 works ok for her.

  • Aren't we all hypochondriac depressives! And so many of us too. Sorry for the sarcasm...The only way any of these Gp's will take us seriously is if they themselves suffer with the condition.

  • I drink coffee (1 cup) in the morning and I take my L-thyroxine at night, well away from any food, the veggies to avoid are the goitrogenic (cabbage family) although when cooked they are not so much of a problem, I love them raw and used to eat lots before I found out. Need to be aware of calcium supplements and leave at least 4 hours between them and L-Thyorixine. You may like to look at selenium as it helps with T4 to T3 conversion. Also have your Iron/ferritin and B12 checked (if you can persuade your 'wonderful and caring' GP to do that. I had my thyroid removed after struggling for 18 years with appalling treatment the GP's took no notice of the goitre until I made a fuss then they jumped about as it turned out to be cancer. The treatment we get for thyroid disease is dreadful. Hope you get some help from some of this. xx

  • Most patients do manage well but not the near 50,000 on this forum who find the opposite otherwise we would be doing something other than being on a forum for ill-health and would prefer to maybe be lying somewhere eating a nice box of chocolates :)

    Tick off symptoms on list below. Copy to your GP and say ' these are my clinical symptoms which I understand need to be resolved' and that is by increasing my levothyroxine to an optimum level to make me feel well and have no symptoms'. The problem is they think symptoms are due to 'another cause' because they know none and only concentrate of the whereabouts of the TSH. :)

    thyroiduk.org.uk/tuk/about_...

  • Welcome to the forum, Twinmommy.

    'Within range' is rarely the same as optimal. If you post recent thyroid results and ranges (the figures in brackets after results) members will advise whether you are optimally medicated.

    Eat and drink whatever you like. There is absolutely no need to adopt restrictive diets because you are hypothyroid. Avoiding unfermented soy is a good idea because soy is not thyroid friendly, and if you have autoimmune thyroiditis (Hashimoto's) 100% gluten free diet can be helpful in reducing frequency of flares and symptoms and eventually antibodies.

    For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen. Drinking coffee within an hour of taking Levothyroxine can reduce absorption by up to 40%.

  • Thanks! How do I know whether I have Hashimoto disease or just hypothyroidism, the documented symtoms seem identical. Would Hashimoto be diagnosed from the blood tests?

  • Twinmommy,

    Ask for thyroid peroxidase antibodies (TPOab) and thyroglobulin antibodies (TgAb) to be tested. If they are positive (over range) it confirms Hashimoto's. Confirming Hashimoto's won't change your treatment options but you may want to try 100% gluten-free diet for a few months to see whether symptoms improve. If not, you may as well resume eating gluten.

  • Twinmommy,

    Just realised you are in the UK. Welcome to third world thyroid care! NHS will probably only test TPOab. If that is positive you have Hashimoto's. If it is negative you may want to order a private thyroid test to check TgAb as some people are TPOab negative but TgAb positive. thyroiduk.org.uk/tuk/testin...

  • If they will test at all!

  • UPower,

    True :(

  • Thanks again Clutter, you really know so much, and I appreciate your common sense too.

  • Hi, i am new to here so please bare with me, i have had hypothyroid for about 5 years now and really struggle with it, like at the moment i my symptoms have surfaced so i know i need to book into the doctors to be retested, but i have just seen your post above about soya. i cant have any dairy also and have soya milk would this be affecting me? Also i take my medication with another medication in the morning which i need first thing (rampril) should these now be taken separate?

    many thanks

  • Kit-Kat46,

    It could be. Best way to find out is to stop using it for 2-3 weeks and see whether symptoms improve and whether they get worse when you reintroduce it.

  • Yes! Soya is known to cause a sluggish thyroid which is a pain because it's in most food products these days. Almond milk alternative is also supposed to cause the same. I tried hazelnut milk today in coffee and I found it revolting. So good luck trying dairy free alternatives. I have been reading about a2 milk and going to try that..Worth reading up on that to see if you could take it.

    Levothyroxine is hypersensitive to many other drugs and foods/drinks so medics normally recommended taking it alone with at least 1 hr gap before consuming anything else.

  • You have twins? Post-natal thyroiditis (or Hashimoto's) is very common after a twin pregnancy. That's how I got mine - twin mum too.

    I'm not saying you have Hashi's but you need to get the results from your GP. They should have done an Antibodies test, so ask for it. x

  • I was diagnosed years before having my twins. I was pretty ill during my pregnancy with my thyroid levels going crazy... I ended up on 300mcg thyroxine just before the pre-term birth. I am on 100mcg now. I was on 112mcg in the States which suited me perfectly but can't get that dose in the UK due to the doses here. 100mcg not quite enough for me to feel fully well but 125 puts my levels over and gives me headaches. Wish it was easier to manage over here.

  • You could cut a 25mcg in half?

    I take my hat off to having twins whilst hypo! Amazing! Truly! x

  • I am only given 100mcg tabs and as they are tiny, I can't cut it small enough, boy, I've tried. GP nor Pharmasist won't give me 25mcg tabs to prevent people doing exactly this, and 'abuse' the meds as they state.

  • Forgive me if you have tried this already twinmommy but do you know you can alternate doses (100/125 every other day). If you're very sensitive you may not find it suitable but I did it for a long time and I can't say I notice a difference one day to the next. It can be a good way to avoid having to cut pills into tiny slivers.

  • I was on 112mcg in the States which suited me perfectly but can't get that dose in the UK due to the doses here. 100mcg not quite enough for me to feel fully well but 125 puts my levels over and gives me headaches.

    **************

    Couldn't you do 125 and 100 alternate days and it would average out?

  • You could take 100 one day and 125 the next. Comes out at about 112.

  • You can get 112.5 micrograms? Close enough? :-)

    Teva 100 + 12.5 microrgam tablets.

    tevauk.com/p/levothyroxine-...

    Very easy now that Teva produce more tablet doses.

  • Hi,

    My humble deduction is that too many people jump on the band wagon of "diet fads".... surely, a balanced simple diet using fresh ingredients and being sensible with use of fats, sugars, carbs, salt, alcohol, dairy,etc should be fine for the majority of people. There are some exceptions of course... but most people don't need restrictive draconian diets that are often expensive, making money for some crafty people and the food is tasteless and inedible! Life is too short.

    However perhaps it would be a good idea to substitute certain products but only one at a time for a while and keep a diary to record how you feel; it may even be possible to re-introduce that food at a letter stage and see what happens. We're all trying to find ways of getting better... Good luck.

  • I was born with a myriad of allergies and thanks to hypo a huge amount more. I do avoid goitrogen veg for obvious reasons but eat a huge amount of veg as I want to look after my skin and avoid constipation. It might be a case of working out the benefits over the disadvantages of foods. I have a very restricted diet due to allergies which are exacerbated by hypo but it works for me. My weight in steady too. I don't believe in snacking, sticking to a good weekend breakfast of porridge and avocado on toast and evening meal of fish and veg with either new potatoes or brown rice, plain yogurt and sunflower seeds keeps me on an even keel. Work days I don't have breakfast, I have minimum content crackers and Philadelphia mid morning with an apple. i stopped eating Brazil nuts because they tasted mouldy to me and realised they made me spotty! My best wishes to you.

  • I very much doubt you need to avoid the goitrogenic veggies, there's far too much hype on that subject. And, I'm willing to bet you do eat goitrogens without even realising, with no ill effects. :)

  • On Mary Shomon's list I only eat broccoli but not raw and a very small amount of radish.

  • How about pears, strawberries, walnuts, almonds? I don't know Mary Shomon's list, but there are an awful lot of goitrogens, and maybe three or four will affect you, and maybe none at all. There's really no need to cut them all out.

  • Hi greygoose! I have masses of allergies that limit my choices. Pears, apples and watermelon are the only fruits I can eat. Citrus, salicylates and lycopene naughty culprits!

  • Well, pears are goitrogenic. So, as I said, you're eating goitrogens and not even aware of it. They won't do you any harm, for the most part. So, carry on eating them unless you have a bad reaction to them - I mean a reaction you can feel, not some vague idea of 'damage' to the gland, because that's not how goitrogens work. Enjoy!

  • My feeling and experience is that hypothyroidism is very much a 'journey' that you will embark on towards regaining your health. It won't be quick nor easy and may take unexpected turns. Don't overload yourself with pressure to conform to particular diets, not at this stage. Read as much as you can, and take your time. :)

    I've gone gluten-free and am attempting to go dairy free as well, but the latter is proving more difficult. I'm not going to pressurise myself, just take my time and do what feels right. I'm not a fan of stringent going-without everything you enjoy type of diets, life must still be worth living! However everyone is different, everyone's journey is different.

  • Thanks for everyones thoughts and comments, much appreciated. It's good to hear that others are going through similiar experiences and I'm not just a head case hypochondriac :)

  • If you have Hashimoto's (high antibodies)then trying gluten free may be a revelation. I was extremely sceptical, as had no gut issues. But the difference has been astonishing.

    Leaky gut, gluten and/or low stomach acid seem common issues for many.

    chriskresser.com/the-gluten...

    thyroidpharmacist.com

    chriskresser.com/the-thyroi...

    ncbi.nlm.nih.gov/pmc/articl...

  • I tried gluten free for a month and it made no difference so I stopped it. I yhink you have to try to find what suits you.

  • I think it is important to remember that chlorine is a halide like iodine, flouride and bromide too. So anyone swimming a lot like I used to do for exercise at the gym may not be a good idea. I found a low chlorinated pool compared to council pools but still not happy with. I thought the sauna may get some of the chlorine out, but I don't sweat easily and the showers were not filtered and so a double whammy. Chlorine filters in the shower at home are a good idea, only cheap (apparently we absorb much greater inhaling steam in the shower than in the water we drink) Eating commercial baked goods, possibly bread/pastries as bromine often added. Fluoride in toothpaste/water, also if live in a fluoridated region in the UK. You can access maps on the internet to determine. All compete and displace iodine on thyroid receptors.

  • It is also important to remember that sodium chloride (whether "pure", sea, Himalayan) is frequently recommended - sometimes in quite large doses. It is most certainly essential for our lives.

    Why do you switch from "chlorine" as in the pure element, to "halide" as in a compound of a halogen?

    Bromine and bromides are banned as additives across the entire EU.

  • Hi Helvella. Sorry I am no scientist. Just repeating what I have heard on health summits/podcasts by functional docs and taken onboard myself. They say Chlorine Flourine Bromine and Iodine are all similar organic structure so can fit on the Thyroid receptors which only iodine should occupy. So therefore if you are low in iodine, then bromine, chlorine or fluorine can occupy the receptors and displace iodine - causing Thyroid issues. As these elements are prevalent in our modern world and are to be found in water foodstuffs toiletries and for example swimming pools, it is best to be aware and avoid at all costs if you think that your Thyroid is struggling or compromised

  • You know for years I was told by GP bloods were fine and I felt awful. Went to see Professor in Oxford.

    10% of the population don't convert T4 to T3 properly. He put me on 5mcgs of T3 every 8 hours.... it changed my life.

  • Thanks! I just wish medics up here in the northern regions of the UK would take me seriously. It's worsened by the fact that the GP's at my practice are also fellow parents at my kiddy's school so I have to brush shoulders so to speak with them at the school gates etc... Rather awkward indeed when trying to fight your case. Other practices won't take me on due to being out of postcode range:(

  • Hi twinmommy. First of all - good for you in doing your own research because I've certainly found that (although I've got a good GP who was willing to try me on levo even though my bloods were not indicative of obvious hypo) all you get is meds, no other advice, which annoys me because not everyone knows they can help themselves by following dietary restrictions, and that doesn't mean we are hypochondriacs! The main reason it annoys me, is that if the Drs don't give any other advice the medical profession know that fluoride suppresses the thyroid because they used to prescribe it for hyperthyroidism. Personally, and accidentally, I found out that whilst being gluten free my energy levels increased considerably, so I continued but mostly just avoid wheat (accidentally because staying with sister in law who's coeliac), e.g. I eat porridge. Soy is another very clear no. I only eat cooked goitrgenic foods. Am now lactose free - tested by NHS last year and clear positive. I have AF so I don't drink caffeinated drinks. Re taking levo - my prescription is 100/125 alternate days. I take mine when I go to bed then definitely on an empty stomach and not going to be eating for a while. 😊 Hope you find all the help you need. Good luck

  • I haven't drunk coffee since my diagnosis, January 11th this year. Before that I could only have decaf and 1 a day! I love coffee and really looked forward to my single cup. Because of the risk I'll not even have a tiny amount 😔. But I'm now drinking much more water and green tea. Funny thing is, I've not missed coffee. Also I'm cooking healthy curries, adore them and delicious home made soups. I'll make a batch of curry or soup which will be a weeks worth. I alternate every day. If it's soup day i have a small second course. My husband found a tasty pack of oatmeal type pancake which I will grate cheese onto, roll up and microwave for 40 secs, wonderful! At lunchtime I alternate between homemade fruit smoothies, tinned fish, or I have a sourdough sandwich twice a week. I am allergic to yeast and have huge problems eating pork, Lamb and beef. But I've had those allergies for years. I do take yakult daily which helps me. My diet is swayed towards the vegetarian lifestyle but not by choice. However I certainly am not bored by my food intake. Since I've been taking Levothyroxine I've loved cooking much more. Excuse the length of my post. Happy Tuesday 😀

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