Can anyone explain what happened to me? - Thyroid UK

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Can anyone explain what happened to me?

Bookworm63 profile image
49 Replies

For the past few years I have thought that I was lactose intolerant so I switched to lactose free milk for my morning coffee and cereal and everything seemed to be much more comfortable stomach wise. When I started taking Levothyroxine earlier on this year after a while it seemed to bring back some of old tummy issues and I thought it was the lactose in the tablet building up. I tried a different brand without lactose but that just gave me constipation and more tummy issues so I went back to the lactose one at least things were moving! I still kept getting heartburn and tummy troubles so I decided to change from lactose free milk to a milk alternative. I tasted many and the only one I really enjoyed was an oat milk. However it did contain iodised salt. I was using it daily only in my morning coffee but last Monday I upped it a bit and used in my cooking and a couple more coffees with it in. All was fine until my evening meal and I started an awful tummy bloat which lasted all night and into the next afternoon. Once it cleared I became shivery and over sensitive to cold. Felt like I was coming down with flu which is the symptoms I had when diagnosed with hypothyroidism. I was achy and tired and felt really unwell. When I got into bed and warmed up I was burning hot all night also had pains all over my face. The next day I felt tired weak and nauseous. I took my medication as usual in the morning and some of the aches did disappear. I carried on doing all the tasks and jobs I needed to do but by evening I was totally exhausted. By then though the feverish feeling had disappeared. I haven’t had any of the milk with iodine in since and things have returned back to normal, thank goodness. The day after that I felt really well and energetic and if anything a little too energetic as I haven’t been able to sleep properly. I didn’t take my thyroxine today as I felt a bit dizzy and a little over medicated but I still feel fine if a little tired. Did the milk have some affect on me? Did it tip me over to hyper? I’d like to know why it happened really as I am really afraid that it might happen again! If it was the milk what the heck am I going to put in my coffee now?? I love my morning ritual of coffee and toast. That quiet time before everything gets hectic. Any advice would be greatly appreciated 😊.

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Bookworm63
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49 Replies
Lalatoot profile image
Lalatoot

Iodine and hypo don't mix! Unless we have an iodine deficiency we need to avoid anything with iodine.

Bookworm63 profile image
Bookworm63 in reply to Lalatoot

Thanks Lalatoot so it probably was the milk then, that’s what I thought. At least I know what it was so I can now avoid it now. So it’s back to the drawing board to look for an alternative.

Kittykat2 profile image
Kittykat2

Ever been tested for coeliac ?

Oats can be dodgy for coeliac.

If not coeliac ....gluten intolerance ?

Coeliac causes villi to flatten causing .

lactose intolerance.

Have you been tested for lactose intolerance or just guessing ?

I had few of those symptoms you describe before finding the coeliac.

Bookworm63 profile image
Bookworm63 in reply to Kittykat2

Thanks for replying Kittykat2. I have often wondered whether I should ask for a coeliac test. I did try a gluten free diet a couple of years back and although I felt better at first the symptoms returned so I went back on the wheat. I did just diagnose myself with lactose intolerance as I found that after drinking milky coffees my tummy started to bloat and I felt sick. I really didn’t want it to be milk as I love it so much. When I made the switch to lactose free milk I felt so much better and just carried on with it. I know I should have gone to be tested properly really. I think I will ask for a coeliac test though at least if it comes back negative I can rule it out.

Marz profile image
Marz in reply to Bookworm63

You can be gluten sensitive without being a full-blown coeliac. Testing can throw up false negatives too 😊

Bookworm63 profile image
Bookworm63 in reply to Marz

Yeah I’ve heard that. I don’t like cutting food groups out if you don’t need to though. I’ve always been a big advocate of all things in moderation. I don’t think that I do have a bad reaction to wheat but it can sometimes give me heartburn but then loads of things give me heartburn! I just want to feel happy and healthy like I used to feel. With a healthy and varied diet. I hate it when things get complicated and if you have to give up so many nice foods you feel like you’re missing out on life. I don’t really eat masses of wheat. I’m not a big bread or cake eater. I don’t overdo anything really. I’ve been so fortunate with health in my life, I guess I just took it for granted. Flipping thyroid!

Marz profile image
Marz in reply to Bookworm63

Sounds as if you have low stomach acid ...

Bookworm63 profile image
Bookworm63 in reply to Marz

Yes that’s another avenue I’ve looked at and I did have a period of taking acv. It did seem to help.

SilverAvocado profile image
SilverAvocado in reply to Bookworm63

I dabbled in acv for a long time and wasn't to sure whether it helped. It was only once I got really strict and had it with every single meal that it was very clear it made a difference.

Kittykat2 profile image
Kittykat2 in reply to Bookworm63

Ok yes may as well rule it out.

Make sure your eating gluten when tested though 😊.

Have you tried rice milk almond milk?

Soya milk is ok but I'm not keen on soya makes me tired for some reason.

Not great with UAT

Bookworm63 profile image
Bookworm63 in reply to Kittykat2

I always have soya if I’m out and it works well. It’s easy to ask for as with the uptake of vegan diets it’s readily available and I figure once in a while is fine. But isn’t Soya also bad if you’re taking thyroxine? I’ve read we’re it can inhibit your absorption of the medication. Rice milk is the only one I haven’t tried. Will source it and give a go 🤞.

Marz profile image
Marz in reply to Bookworm63

Most soya is genetically modified !

in reply to Bookworm63

Isn't soya a problem if you are hypothyroid?

hjh88 profile image
hjh88 in reply to

Yes! It mimics oestrogen in the body and causes problems with absorption of thyroxine. Plus potentially causing other problems related to levels of oestrogen being too high/oestrogen dominance.

in reply to hjh88

thank you

Sharoosz profile image
Sharoosz in reply to Bookworm63

Avoid soy products with thyroxine. Cashew milk is quite nice, most creamy of all the 'mylks'.

greygoose profile image
greygoose in reply to Bookworm63

No, it doesn't inhibit the absorption of the levo. It inhibits the uptake of T3 by the cells. So, you can have good levels of FT3 in the blood, but still have hypo symptoms. Soy is just generally bad for everyone, anyway. There's just so much wrong with it. Far better to avoid it, if you can.

Have you tried sheep's or goats' milk? They're supposed to be ok for the lactose intolerant. And they taste just the same as cows' milk.

Bookworm63 profile image
Bookworm63 in reply to greygoose

Thanks Greygoose I have been checking out the goats milk this morning so am going to give a go 😊

greygoose profile image
greygoose in reply to Bookworm63

I always have goat milk these days - not that I consume very much - it's mainly for my Yorkshire Puddings! I tried sheep milk, but it's just a teeny weeny bit sweeter than the other two. :)

greygoose profile image
greygoose in reply to Kittykat2

Makes you tired because it stops your T3 getting into the cells.

Tugun profile image
Tugun in reply to Bookworm63

Hi Bookworm63,

I had a coeliac test but found out later that I hadn't been taking enough gluten for the test to be effective. You need to be taking it for awhile and a lot of it. If you go ahead with the test - just make sure that you have enough gluten, long enough for the test to be worthwhile. Cheers!

Marz profile image
Marz

Coconut oil in coffee is good I am told !

Bookworm63 profile image
Bookworm63 in reply to Marz

Mmm not sure about that Marz. Tried coconut milk and that tasted yuk 😝. Very bitter. I have some coconut oil so I’ll give it go though. Thanks for your reply

helbell profile image
helbell in reply to Bookworm63

I use oatly in coffee

Bookworm63 profile image
Bookworm63 in reply to helbell

It was oatly milk that I had and I agree it’s lovely but it has iodised salt in it and I think that’s what tipped me over so I’m not keen to back to it.

helbell profile image
helbell in reply to Bookworm63

Oh. Beg your pardon. That's a shame. Intending to try and make some creamy oat milk. Looks simple enough....I hope. minimalistbaker.com/make-oa...

Bookworm63 profile image
Bookworm63 in reply to helbell

Thanks helbell looks easy enough 😊

in reply to Marz

I think it's disgusting. :)

Jeppy profile image
Jeppy in reply to Marz

And coconut milk yummy

Lalatoot profile image
Lalatoot

There is a lactose intolerance in my family. For me though it is heated milk that causes the biggest upset. I can tolerate milk in tea but I would not enjoy a latte. Have you tried just having a little cold milk in your tea?

Bookworm63 profile image
Bookworm63 in reply to Lalatoot

That’s a good idea. I’ve got a sneaky feeling I jumped the gun with lactose intolerance. That’s just so me though, rush in with a solution and hope for the best. Lately I’ve been thinking it’s not the lactose that’s causing the problems at the moment but too much lactase! I’m going to try ordinary milk in my coffee tomorrow. I’ll let you know how it goes. I’m starting to think that my tummy issues were actually thyroid related in the first place and now that I’m sufficiently medicated lactase is redundant and I just need to be brave and go back to normal.

Lalatoot profile image
Lalatoot

Yes but take it slowly. Don't go having a huge bowl of cereal and milk right away. Try with your coffee first.

Bookworm63 profile image
Bookworm63

Will do 👍

Boon79 profile image
Boon79

Join the club! My bloating is the one thing that never seems to go away despite feeling generally well on a mix of NDT and levothyroxine. I can’t take NDT on it’s own because my T3 goes slightly above range.

I find that it helps if I avoid white flour ( white bread pasta etc), and avoid coffee, onions and too spicy food. I have been following the Slimming World diet for the past few weeks and feel that my stomach issues are better. Many people go gluten free but for me I find it very challenging.

Frothy milk in decaf coffee bloats me like mad so I have cut down on my milk consumption, which helps. Too much iodine can affect your thyroid. In the Western world we get enough iodide through salt so thyroid issues are usually down to Hashimotos.

It’s trial and error with diet. Try cutting out dairy for 2 weeks to see how you feel, maybe gluten after that, and slowly reintroduce them to see what affects you.

Check up on it but I'm almost certain that soya is not good for hypothyroidism

Bookworm63 profile image
Bookworm63 in reply to

I think that too. I’ve read it inhibits your uptake of thyroxine. I only habit occasionally if I’m out. It’s easier to ask for as most restaurants now have it as a milk alternative. I think only having it occasionally is probably ok.

UHelga profile image
UHelga

I too am in the same boat with bloating and indigestion and for years i used to experiment with different foods until a naturopath put me on an elimination diet. Reintroducing foods, one at a time, after a few weeks of clearing them from your system gives you clear cut answers.

I was shocked to find out that I was intolerant to gluten and dairy as well as additives and some vegetable/ fruit groups that are high in natural food chemicals which affect some of my other health issues. Avoiding several things is not easy but despite having always being a big advocate of all things in moderation, the evidence has taught me that some rules just don’t work for me.

Bookworm63 profile image
Bookworm63 in reply to UHelga

I would like to be brave enough to do this but where do you find a naturopath? This sort of thing has to be done carefully. Have all your stomach issues been sorted now?

tallulah100 profile image
tallulah100

Hi, have you tried coconut milk, goes well with coffee, and almond milk on cereal? That is what I use.

Bookworm63 profile image
Bookworm63 in reply to tallulah100

Thanks for replying tallulah but I found both almond and coconut milk too bitter for my coffee. Liked them as drinks on their own though 😊

levelslass profile image
levelslass

Sounds like gluten intolerance to me. Try unsweetened almond milk?

stiltzski profile image
stiltzski

I am intolerant to cow’s milk (give me sinusitis and post-nasal drip), but I am fine with goat’s milk. Worth a try? When I try the other milk substitutes (almond, oat etc), they just don’t taste right and are pretty awful in tea. I think I am gluten intolerant too. Bread just causes bloating. I basically avoid bread in all its forms now as the gluten-free alternatives are too sweet. Good luck!

Bookworm63 profile image
Bookworm63 in reply to stiltzski

Thanks stilzski, I’ll give goats milk a try 😊

Catseyes235 profile image
Catseyes235

You should continue taking thyroxine as per usual. It’s a cumulative affect so leaving the odd one out will just mess with your treatment. Toast is bad news for acid reflux. Your stomach produces more acid (as it does for refined flours and sugars so avoid pastry cake biscuits) to digest toast. I rarely get reflux and no longer take medication with a simple change in diet. I have found refined breads cause bloating but sourdough doesn’t though I limit all bread/wheat intake to once a day/2 slices using brown rice or maize pasta or potatoes. So many alternatives to wheat - polenta, buckwheat, quinoa. People sometimes become obsessed with infinitesimally small quantities of things eg cabbage can suppress thyroid activity .....but you’d have to eat so much cabbage you’d probably be declared a public nuisance before that happened! There are so many different oat milks and my daughter has a lovely one which doesn’t curdle in hot drinks. Sorry can’t remember name.

Bookworm63 profile image
Bookworm63

Thank you Catseyes , I have bought a different oat milk without iodine in and I’m going to try that one today.

JAGL profile image
JAGL

It is popular now to speak of 'lactose intolerance'. Lactose intolerance people can often palliate their symptoms with the missing enzymes. More difficult is an allergy to milk protein. There is no treatment -- a part from avoiding all products with milk and whey (milk protein in a purer form).

The same goes for gluten intolerance. It's not enough to avoid wheat. All grains -- from wheat to barley to oats and even rice (5%) -- contain a form of gluten. It's what makes bread dough elastic and able to 'rise'. Substituting maize, for example, can lead to an intolerance of that grain.

The quantity of milk produced by cows has tripled or quadrupled. The same goes for grains. Our bodies aren't machines. Many of us are having a tough time keeping up with progress of agricultural technology.

Bookworm63 profile image
Bookworm63

Lactose free milk did always seem to work for me until recently and so did lactase supplements but for some reason lactase and lactose free produce has started to give me tummy ache. Bit of a pain really as I was doing fine on it before.

Angel22 profile image
Angel22

Hi. I gave up milk around the time I first started Levothyroxine years ago. I started a lactose free brand of Thyroxine and also got awful stomache pain etc, however, I persevered and the pains stopped. I have tried a range of plant milks over the years and the best in coffee/tea etc is KoKo coconut milk- this is a uht one, not fresh and in most supermarkets. It's very mild, often fortified with B12- recommended by Thyroid Uk, along with vit D as we can be deficient in these. Also hemp milk. All plant milks have to be shaken well prior to using. Have you been checked for Hashimoto's? If you have this it's recommended not to take an iodine supplement, avoid soya and to have a gluten free diet.

Bookworm63 profile image
Bookworm63

Thanks Angel22, I tried the koko brand but it wasn’t the UHT one. It was a very pleasant drink on its own but not very nice in my coffee. I’ll try the UHT. I’ll try anything to get this right! Haven’t tried Hemp yet though. How long did you have to persevere with stomach troubles with the lactose free thyroxine? Was it Teva?

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