What’s your relationship with food?: Hi everyone... - Thyroid UK

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What’s your relationship with food?

PearlSapphire22 profile image
54 Replies

Hi everyone!

A bit of an odd question but, I am really struggling with any and all food recently. I am diagnosed with having Hypothyroidism but, my FT3 has been well above the reference range for a good couple of months and although I have reduced my armour dosage, I feel as though I’ve gone the opposite way now as I’m struggling with being exhausted all the time, having brain fog, no motivation etc.

However, the main thing I’m struggling with is food. I either have no appetite whatsoever and can go the whole day without food but then, eat a dinner or rubbish at night. Or, I’m starving but have no idea what I want and therefore still end up eating snacks (nuts/crisps/chocolate/fruit). Food that I normally eat without problem (eggs, or any meat really) have me nauseous at the smell, mostly when it’s raw. If a plate of food is put down to me I can eat it but, I don’t finish the plate because I get full very quickly.

Does anyone else have or have had any problems like this? I feel like I’m going crazy and becoming a huge burden for those around me.

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54 Replies
greygoose profile image
greygoose

Sounds like low stomach acid, to me.

Meerkat1234 profile image
Meerkat1234 in reply togreygoose

Hello grey goose. If my eating problems are low stomach acid what do I do.

greygoose profile image
greygoose in reply toMeerkat1234

You could try Apple Cider Vinager - with mother - a tsp in water, drunk through a straw before meals. That would raise your stomach acid. Or you can get HCl and pepsin tablets. Have a look at this article on the subject and try the home test to give you an idea how high/low your stomach acid is:

my.clevelandclinic.org/heal....

Meerkat1234 profile image
Meerkat1234 in reply togreygoose

Hello grey goose. Thank you for your kind reply about low stomach acid which I am sure is my problem with eating. I have tried the HCL and Pepsin tablets and they made me feel really sick but I haven’t tried the Apple Cider Vinegar with mother. Also thank you for the link which I will read. Thanks again for your help. Take care.

greygoose profile image
greygoose in reply toMeerkat1234

You're welcome. :)

Meerkat1234 profile image
Meerkat1234 in reply togreygoose

hi grey goose. Did you mean tablespoons and not teaspoons as that is what I read. 😊

greygoose profile image
greygoose in reply toMeerkat1234

Good question. I did mean teaspoons, but now I'm not sure that's right! Do you think it should be tablespoons? I've never actually done it myself, because the smell of CAV makes me sick. I certainly couldn't swallow it! 🤣

Meerkat1234 profile image
Meerkat1234 in reply togreygoose

Morning greygoose. I am confused as well. It doesn’t say anything on the bottle. I got it because Seaside Susie used it. Can you ask her for me please. Thanks 😊

greygoose profile image
greygoose in reply toMeerkat1234

Hi SeasideSusie can you - or anyone else, for that matter - answer this question, please? 1 teaspoon or one tablespoon of ACV in water before a meal for low stomach acid? :)

SeasideSusie profile image
SeasideSusieRemembering in reply togreygoose

I use 1 teaspoonful but I think it's one of those things that is very individual, you need to find what is right for you. Experiment and find the amount that is helpful for you.

I add mine to a small amount of orange juice, it's quite pleasant tasting.

Meerkat1234

greygoose profile image
greygoose in reply toSeasideSusie

But the smellllllllllllllllllllll! lol

Thank you, Susie. :)

Meerkat1234 profile image
Meerkat1234 in reply togreygoose

Thank you for asking Seaside Susie.That is kind of you. 😊

greygoose profile image
greygoose in reply toMeerkat1234

You're welcome. :)

If you want to attract the attention of any member on here, just put @ in front of their name (no space) and then click on their name in the drop-down menu that appears. It should turn blue. Then the person will be notified.

Meerkat1234 profile image
Meerkat1234 in reply togreygoose

Thank you for explaining what to do. You were right about teaspoon. I was reading about ordinary ACV which said tablespoon, then I read about ACV with mother and it said teaspoon. I am here to confuse you.😂 grey goose.

greygoose profile image
greygoose in reply toMeerkat1234

And you're doing a great job! 🤣🤣🤣

Meerkat1234 profile image
Meerkat1234 in reply togreygoose

I usually do grey goose. I get an A+ in confusion.😂😂😂

SeasideSusie profile image
SeasideSusieRemembering in reply togreygoose

I don't mind the smell (it's not as bad as the vinegar that's put on chips, I can't stomach that 🤮 , salt only on chips for me!) and once in the OJ there's not really much smell but that might depend on how much used.

greygoose profile image
greygoose in reply toSeasideSusie

Or how sensitive one is to it?

I love the smell of ordinary vinager - especially if it comes out of a jar of pickled onions! he he he

Meerkat1234 profile image
Meerkat1234 in reply toSeasideSusie

I will have to put up with the smell. I just want to digest my food as I can’t digest protein. Thanks for all your help.😊

Meerkat1234 profile image
Meerkat1234 in reply toSeasideSusie

Hello Seaside Susie. Thank you for explaining how to take it. Grey goose was right and I confused things. Do you take it before you eat protein as there are no directions on my bottle..

SeasideSusie profile image
SeasideSusieRemembering in reply toMeerkat1234

I just have mine before breakfast and that's always some sort of cereal. There won't be any directions on the bottle because it has many uses, I remember buying a book donkey's years ago about the uses of ACV, if I remember I'll try and find it and list some of them. No promises, I might not be able to find it!

Meerkat1234 profile image
Meerkat1234 in reply toSeasideSusie

Thank you for telling me how to take it. That would be good if you could give me some more information. It is very kind if you.😊

Meerkat1234 profile image
Meerkat1234

Hello PearlSapphire22. I came on this forum with severe problems with eating. This has been going on since 2013. I was diagnosed hypothyroid in March. I was given 25 mcg of levythyroxine and told to go up to 50 which I did and my heart pounded so dr told me to go back to 25. I have had to cut out gluten dairy soya eggs and can’t digest meat. I live on carbohydrates. I feel worse on the levothyroxine than I did before. I can’t sleep and feel very hyperactive. I have Autism and ADHD and the medicine is making meltdown’s worse. I am very anxious and depressed. My vitamins are low but can’t take supplements. I am trying protein powder like Dr Isabella Wentz says but that is making me feel ill. I am sick of feeling so unwell. I have read that some people can’t take levothyroxine. I am also taking medication for sleep,anxiety and numbness which could all be interacting badly. I have just got over a bad abscess in my groin. I have read that some people just take FT3 and that is the one that controls digestion but the doctors won’t give it, I also have large platelets in my blood and waiting to see Haematology. My FT3 is really low when it was tested. Having a blood test on Monday. I am sorry you are struggling but it is my eating that is the problem as I am getting so weak.

PearlSapphire22 profile image
PearlSapphire22 in reply toMeerkat1234

Hi Meerkat1234,

I am sorry to hear how you;re feeling. There was definitely a time while I was fighting for diagnosis that it all just felt unbearable.

For me at least, levothyroxine didn;t work at all. I have been on armour and while I do eventually end up with high T3, it is a sight better than the levo. I can function on the daily for the majority of my life. It is true that you can only get armour privately, at least in my neck of the woods.

Have you been tested for gluten dairy soya and egg intolerances? I know that the keto diet is supposedly very good for thyroid sufferers, despite being meant for those with diabetes. Are they positive that it’s hypothyroidism and not hyper being that you’re only on 25mcg and feel like this?

Sending warm hugs and thoughts, I hope things get better!

Meerkat1234 profile image
Meerkat1234 in reply toPearlSapphire22

Hello PearlSapphire. The levothyroxine hasn’t worked. I feel just as bad in fact worse as it is giving me insomnia and making me hyperactive. I have Autism and ADHD so more hyperactivity is the last thing I need. One doctor said I have an underactive thyroid and another one said it was only very mildly off. What is the difference between hypothyroidism and hyper. I have to eat gluten dairy soy and egg free and I can’t digest protein. A lot of my blood tests were abnormal last time and my platelets are large. I am waiting to see a Haematologist. I am sleeping downstairs as I can’t get up the stairs. I suffer with depression and crippling anxiety and sometimes that I can’t go on. Thank you for your warm hugs and thoughts.. I send the same back to you. The keto diet is supposed to be good for Autism and ADHD. The doctor wanted me to go up to 50 mcg of levothyroxine and I tried. The side effects for me were terrible. Sorry to be so miserable but I am just laying in bed and life is just passing me by without seeing my family. What did the levothyroxine do to you. 😊

Meerkat1234 profile image
Meerkat1234 in reply toPearlSapphire22

Hello,PearlSapphire22 You said you get Armour privately.Do you live the United Kingdom like I do. I have just read Amy Myers’s and she said only take NDT. I am so sick of feeling like I am going to die and so weak. I have looked at hyper which I think you mean an overactive thyroid and I haven’t got those symptoms. Take care. I hope you don’t mind me writing two messages to you. 😊

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group.

Over the years I've had all manner of issues with food. Mainly because firstly I was on Levo only, secondly because I hadn't paid any attention to low vitamin levels caused by malabsorption from low stomach acid. This is extremely common in hypo people.

After you have been on a steady dose of NDT for 6-8 weeks I would get bloods done again but also include tests for ferritin, folate, B12 & D3. Post results here when you have them and people can comment.

A certain portion of Hashi sufferers will get gut dysbiosis or SIBO. Gluten and dairy are commonly things that some Hashi people are intolerant of. Have you ever tried diatary changes?

If you are taking a little too much T3 then that can also play into intolerances.

To be well people need all 4 key vitamins at OPTIMAL levels for their thyroid hormone to work well.

PearlSapphire22 profile image
PearlSapphire22 in reply toJaydee1507

Hi Jaydee1507,

Thank you for replying!

I have tried dietary changes including gluten, sugar and dairy. I went to Jan de Vries and they ruled out any gluten intolerances but said to keep an eye on foods with high acidity. I will definitely get tests done for my vitamins.

I have an appointment with my specialist on Thursday with my new blood tests and hopefully he’ll be able to pinpoint whatever it is.

Jaydee1507 profile image
Jaydee1507Administrator in reply toPearlSapphire22

Do start a new post with your vitamin results. Highly unlikely your specialist willknow what an optimal level should be.

radd profile image
radd

PearlSapphire22,

My relationship with food is I love it too much! 😁😬

Going g/f helps many with gut problems by reducing gut inflammation. Also many hypo's have low gastric acid so taking Betaine HCL + pepsin with protein rich meals can help with easier digestion ( I still take mine even after years, probably need it forever 🤷‍♀️). Others have gut infections, resulting from the low gastric acid and so investigations into SIBO, h.pylori, candida, etc.

I found Armour too T3 potent and so had to reduce dose and add some Levo to achieve my correct FT4:FT3 ratio. If FT3 levels have been high, then an increased metabolism can increase symptoms of existing conditions. If I was you I would get thyroid meds sorted first as this may alleviate other symptoms.

I previously found glutamine good for gut repair and if you can get a combo with slippery elm and marshmallow, even better. I hope you feel better soon.

PearlSapphire22 profile image
PearlSapphire22 in reply toradd

Hi radd,

Thank you for getting back to me.

I didn’t know you could mix Levo and armour. When i was on armour my emotions were way out of control and I just didn’t feel well in general. With the armour however, I am fine from one end of the year to the next, but I do eventually end up way overactive and have to start the song and dance of coming down again (with all manners of symptoms in the meantime). I will mention this to my specialist to see if it might be worth trying for me.

I’ll have a look into the glutamine!

BlueKeith profile image
BlueKeith

I've been same since Christmas. That's when my levothyroxine got put up to 100mcg. I used to be hungry all the time but now only feel a bit hungry on an evening. For me though it's been sort of a good thing because I was overweight and now putting me in a healthy range . I've started taking apple cider vinegar as I heard it's good for low stomach acid and seems to be working. 🤞. I ate a full mixed grill the other day as I felt really hungry for first time in months. Just don't wanna start putting weight back on. Hope you find your cure.

Meerkat1234 profile image
Meerkat1234 in reply toBlueKeith

Hello BlueKeith. Grey goose and I don’t know how much Apple Cider Vinegar that I should take. As you ate a mixed grill with it could you please tell me. Thanks

BlueKeith profile image
BlueKeith in reply toMeerkat1234

A tablespoon in a glass with a drop of water just to dilute a little

Meerkat1234 profile image
Meerkat1234 in reply toBlueKeith

Thanks for replying BlueKeith.

PearlSapphire22 profile image
PearlSapphire22 in reply toBlueKeith

Hi BlueKeith,

Thank you for replying!

Apple cider vinegar seems to be the consensus here, I’ll definitely give it a try. For whatever reason, I struggle keeping weight on so losing even a couple of kilos is irritating to say the least. Hopefully trying the vinegar will give me my appetite back.

TiggerMe profile image
TiggerMeAmbassador

Yep, I can sympathize! When on levo only this was very much me, adding lio has improved things and I now manage a decent breakfast and try to eat something varied mid afternoon... rarely have any appetite later so maybe some fruit or nuts.

I think HRT has also helped with gut health

I gave up trying to fit in with others, I tend to eat when it suits me and they are fine with that... pretending to be 'normal' and suffering afterwards was a fools game 😕

I keep out of the way when things are being cooked that I just can't bear to be around

PearlSapphire22 profile image
PearlSapphire22 in reply toTiggerMe

Hi Eeyore100,

Thank you for coming back to me! Also I have to say I love the nickname, Eeyore is my sister’s fav!

Can I ask what is lio? Now that you mention it, I used to never be able to leave the house without breakfast and now I struggle to eat in the morning. I wonder if the food problems have been playing up for much longer than I originally thought.

I rarely stick to appropriate meal times, I eat when I’m hungry and you’re right it works wonders!

Equally, the cooking drives me bonkers. I have often cooked a beautiful meal and sat down to eat and just cannot find it in me to want it. RIP to the amount of food wasted because of thyroid 🙄😂

TiggerMe profile image
TiggerMeAmbassador in reply toPearlSapphire22

Hi Pearl, Lio (Liothyronine or T3) 🤗

Meerkat1234 profile image
Meerkat1234 in reply toTiggerMe

Hello Eeyore100. Does your doctor prescribe T3 to you. Do you take levothyroxine. I take 25 mcg and trying to go up to 50 mcg but the harsh side effects are awful. It seems the people that take T3 feel better. Could you please help me with some advice as this is all new to me. Thanks 😊

TiggerMe profile image
TiggerMeAmbassador in reply toMeerkat1234

Hi Meerkat,

I started myself on T3 whilst I waited for my NHS Endocrinologist appointment (GP can't prescribe) as I was at the end of my tether.... if I were you I would ask to be referred as soon as you can to get that ball rolling, you might get a good one, you need to email tukadmin@thyroiduk.org and see if there is one in your area that you want to name, there is a long wait (though you can jump in and get a cancellation)

It is so hard to advise when you get this low, ideally you need to aim at getting your VitD,B12, folate, ferritin etc up but it is harder when your stomach really doesn't want to know.

I started with sublingual B12, Vit D/M7 and B complex you can get in a spray, check out betteryou.com/products/comp... to avoid the stomach they worked really well and I added a little T3 which kicked things into gear!

Epsom salts baths are a great way to get some magnesium into you

There is loads of guidance on here about self medicating and we will all help where we can. Have you put up some recent blood test results? You mentioned that you know your fT3 is low so that really needs sorting.

I don't think anyone would feel well on 25mcg of Levo other than a child! You could ask your GP for liquid levo which might be much kinder on your stomach, they should be supporting you to get your dose up 🤗

p.s which tablets are you on Teva upsets a lot of people?

Just realised this isn't your post... perhaps start a new one with your recent results 😉

Meerkat1234 profile image
Meerkat1234 in reply toTiggerMe

I had a blood test last Monday and will post results when I get them.This is the right post. I got your message.How much levothyroxine do you take? I take Wockhardt brand. I don’t have a bath only a shower and I am sleeping downstairs because I am too weak to do the stairs and the shower is upstairs. I can’t take vitamin d and I tried the one you said.My b12 is low only just over normal.Thanks for advice. 😊

TiggerMe profile image
TiggerMeAmbassador in reply toMeerkat1234

I take 100 Levo and 15 Lio, perhaps you ought to ask them about B12 injections?

If you have online access to your medical records they might be there by now?

Meerkat1234 profile image
Meerkat1234 in reply toTiggerMe

I have online access. When this all started my B12 was really low and I had b12 injections then they stopped them a long time ago. I felt much better but the doctor said he couldn’t understand it because the B12 went so high . I am so confused.,

TiggerMe profile image
TiggerMeAmbassador in reply toMeerkat1234

That makes no sense?? Of course your B12 will be high after an injection of it?? I don't like the wisdom of you Dr

Meerkat1234 profile image
Meerkat1234 in reply toTiggerMe

my doctors are absolute rubbish.they all say something different and that is why I am so confused.

Meerkat1234 profile image
Meerkat1234 in reply toTiggerMe

I did ask to see an endocrinologist but the doctor said they would just put medication up like that was a bad thing. I have numbness in hands feet and mouth and my blood platelets are too large so waiting to see a haematologist.I feel like I am going to die and I am missing Easter with my husband children and grandchildren. I feel so depressed and never ever felt so weak.haven’t eaten protein since 2013. Going to try apple cider vinegar with some cod.. I am so scared of the pain because it lasts days. I had norrovirus twice in 2012 and by 2013 could only eat carbohydrates.sorry to be so miserable 😖. I feel very depressed.

TiggerMe profile image
TiggerMeAmbassador in reply toMeerkat1234

It is a miserable time getting sorted but it can turn around surprisingly quickly.... When I couldn't stomach meat I started taking these which are all the essentials, I still take them now as I rarely fancy meat

amazon.co.uk/dp/B07GV3XMWT?...

Meerkat1234 profile image
Meerkat1234 in reply toTiggerMe

Thank you for that link. You are very kind and helpful. Sorry to message so late.😊

Regenallotment profile image
RegenallotmentAmbassador

it’s all linked isn’t it, i am more likely to overeat and feel sick than under. I echo the others betaine with pepsin is a game changer at meals. In fact I have my daughter the last lot and have just had to reorder.

I had a phase of vegetarianism about 10 years ago because I thought I couldn’t digest meat properly,

I must have had diarrhoea for 20 years (didn’t realise all soft stools without form were it, thought it was just the tummy bug sort) it turns out it wasn’t the meat, which I went back to eating when I couldn’t resist a sausage on a BBQ when we were camping one time 🤣

Anyway daft stories aside, this advice from an ancient and very wise antenatal nurse helps me.

Think of the week on balance and not meal to meal.

Eat when you are hungry, don’t leave it too long if you are.

If something really doesn’t agree with you, avoid it for a few months and try again.

I am and have always been a carb dodger, as a child I refused to eat pasta, pizza, hated sandwiches, not a fan of mash or boiled potato. But could eat my own body weight in roasties. Mum reminded me as a toddler I refused to eat cooked veg, I’d have a little side plate of raw veggies and munch through like an Easter bunny. Could never have warm food on the same plate as cold (that’s just wrong! 🤣) I’ve either masked or repressed these behaviours in adult life.

Going gluten and dairy and soy and most sugar free has helped. I snack less. Addressing my salt cravings with salt in my breakfast smoothies (inspired by Wentz) and salt in my water bottle in the afternoons has helped massively with cravings.

I am tending to eat less between meals, enjoy a meal and not feel snacky an hour later either.

I hope you find a comfortable sustainable way for yourself soon, it’s awful feeling low because you are running on empty with a metabolism and gut that have gone awol. Sending hugs and yummy nibble vibes 🌱🦋🌱

Edit: oh and T3, 8 weeks on 5mcg and the reflux is better and firmer movements are a regular feature in my life 🙃

PearlSapphire22 profile image
PearlSapphire22 in reply toRegenallotment

Hi Regenallotment,

Thank you for your response. The antenatal nurse is a genius!

It really takes the pressure off by thinking of meals over the course of the week. Sometimes I find myself thinking that I should eat because I haven’t had lunch-dinner that day but, in reality a snack would do.

I absolutely relate to the raw veggies, I still prefer most of my veggies raw and definitely get likened to rabbits 😂

I also have my hang ups and my plates, I could never mix things. So, when I order a Chinese the sauce is separate from the rice; my pasta is separate from my bolognese etc. I’ve gotten better now that I’m older but you’re right; some things shouldn’t mix!

I’m delighted to hear about the firmer movements 😜

Geography1 profile image
Geography1

Hi, well, I would say try the vinegar first, there are also something called bitters that can help.

Batty1 profile image
Batty1

I have my moments with eating but I think everyone one does from time to time.

check your cortisol maybe?

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