I’m sure this must be in my head but I’ve been on 50mg of Levo for 5 weeks and it made my hypo symptoms much worse. Fatigue and diarrhoea, I was even signed off work for 3 weeks. Being gluten free has come up on here time and time again and I’ve done my best to ignore it because the thought of not having bread or cake fills me with horror. But today I bit the bullet and had some gluten free crumpets for breakfast and gluten free bread as a toastie for lunch. I’m usually so tired by 2pm I need a nap, but today I was still full of beans at 3pm and my thought processes seemed sharper.
My question “is this normal, or is it in my head”?
Written by
DaddyCool2001
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I’ve been totally gluten free for about five years and alas I can’t remember that far back.
If you don’t know about it already it’s well worth joining coeliac.org.uk/home/ You get an amaz8ng dictionary of gluten free foods and ingredients, a great website with recipes etc, a magazine and a huge amount of helpful information. Great for when you are starting out.
I never ever suspected gluten to be a problem. No gut symptoms at all....yet as you say saw on here again and again and again that often gluten was hidden problem
I was absolutely astonished at almost immediate noticeable improvements in symptoms....like you by the end of day one I felt significantly better.
It took much longer for brain fog to very slowly fade.....more like a year
I was told after an endoscopy, biopsies and blood tests that I didn't have coeliac disease. Five years later I finally went gluten-free as an experiment. I got benefits within five days and have eaten gluten-free ever since apart from the occasional accidental ingestion.
It worked for me . I had daily tummy pain , constipation etc. Now a memory , I didn’t have test although it was offered by docs . I had already had such a good response I certainly wasn’t going to eat gluten again just for them to say I had a problem or no! .
It definitely had a quick effect on me going gluten free. Didn’t remove all the symptoms but many of the digestive troubles such as extreme bloating and heartburn. I still get very fatigued but it seems more related to exertion than what I’ve eaten.
I have been on 100 - 150 levo for a year now starting on 75 three yrs ago.. at first I felt awful for months, I read about gluten free and thought,... not for me.... then I was diagnosed ceoliac.....and had no choice...I feel so much better.... I have occasional cross contamination if I eat out and this impacts on my thyroid as malabsorption is instant....hence the fluctuation in levo dose.... my G.P tests my bloods regularly to get the dose right...and I have 6 monthly gastro appts and see the dietician.. Once you get used to a gluten free diet it’s fine.....just not fun for eating out
Thanks for all the positive and informative reply’s. I’ve joined CoeliacUK which looks great.
It didn’t help my sleep unfortunately, but definitely had more energy than usual all day.
I’m off to North Cyprus on Friday so I guess it’ll be back to the gluten for 2 weeks, but after that I’ll definitely be making gluten free a permanent change.
You might be surprised, a Coeliac friend if mine says Italy is amazing and when we went out with him we went to a tapas restaurant and he had no problems. When I want to eat out I tend to google the restaurants and if they don’t have food shown on the menu as gluten-free I don’t go.
So many places offer gluten free that I beginning to think that they’ve realised that not offering is basically the kiss of death for their business.
If you look online you will find a card explains that you are gluten free in several languages - you could print it off and take it with you.
Holiday destinations often have gluten free foods, I always ask. They supplied me with gluten free bread when I went on a trip down the Nile earlier this year.
Keep with it and see if the improvement continues.
I react very quickly to medications - I have a superfast reaction gene apparently, according to 23&me - I presume it could also affect absorption from foods, maybe you are the same?
I feel much better on a gluten free diet and started feeling improvements quite rapidly.
Daddycool2001, I'm not sure if you're also asking about feeling worse at first on 50mcg.
It's common to feel worse on a low dose of Levo. It's enough to disrupt your body's own regulation, but not enough to contribute. Best practice is to retest and get a dose adjustment after 6 weeks on a dose, the NHS will often make us wait a bit longer.
In blood test terms, the first thing you want to see is a freeT4 quite high in range. It's okay to increase all the way to the top of the range and slightly over if necessary to improve symptoms. Don't let the doctor dose you based on TSH.
Thanks SilverAvocado I have my first bloods since starting scheduled for 8.20am on Monday. I’m also doing a Medichecks Test within the same hour as my GP won’t check t3 or vitamins.
My sister is a few months ahead of me with her Hashimoto’s and they have kept her on 50mg Levo, but my symptoms seem a lot worse. However, I am a man so my pain threshold is naturally lower😂
My problem is that my increase to 75mcg Levo since April has resulted in chest pains, had to get checked so I’m sure Doc will want to reduce!!! It’s so hard when such a dangerous symptom happens and you have to get checked......no one wants to die!! Really not sure what to think or do. My TSH drops like a stone!
Well I’ve been a very silly girl and eaten gluten all week 😩 I was GF for 2mths and then allowed some less obvious gluten back into my diet ie hidden gluten. I don’t eat breads and pastas as a rule anyway so GF wasn’t a hardship but I did go strict a few months back, didn’t notice much difference so I allowed myself to not worry for example gravy granules But like I said I steer clear of grains anyway so no worries. I’ve been on holiday last week and I really went to town with toast and pasta and doughnuts 😩 It was a running joke at the time because gluten does make my farts smell soooo bad! Lol So I thought that’s the worst of it and I’ll take care again when I’m home. But my god!! I’ve just had a really bad 2 day headache! Constipation, slept all day yesterday and burping because of low stomach acid 😩
I think it’s because I feel like fraud sometimes because it’s ingrained in us that unless a Dr diagnosis us then it’s not true and ofcourse most of us would pass the coeliac test because we have an intolerance and not a genetic condition. It’s just bonkers!!
Well lesson learnt here! I will not be eating gluten again EVER!
Don’t mention doughnuts! I’m sitting here eating another Warburtons GF cheese toastie while the rest of the family enjoy leftover Dominos pizza for lunch🤨
Yu can get gluten free pizzas - think they are pizza express. I start with a basic and add extra tomatoes and anything else I find in the fridge and fancy onto it. They also serve them in their restaurants. Saying that I wouldn’t say not to a cheese toastie! Mmmm very tasty.
One thing to be aware of is that some people get temporary withdrawal effects from going gluten-free e.g. insomnia, feelings of extreme tiredness, feeling like they have the flu. I got this but it wore off in about 5 - 7 days. It was a shock to the system because I was completely unaware that it might happen.
im off Gluten dairy and grains I feel so much better so yes it probably was down to you not eating gluten that you felt ok autoimmune conditions come on due to our leaky guts and our diet read The thyroid connection by Amy Myers MD very informative
I am so glad! This forum should be full of more good news stories.
Going GF didn’t have an instant impact on me but after a few weeks on it - about 6 / 8 - one day the brain fog suddenly lifted and I felt myself (pre- hypo) again. I have lapsed on being GF since then, so thanks for the reminder.
Ps. Are there any good studies out there that back this up? Whenever I’ve mentioned GF and thyroid to a doctor, I’ve only met blank stares.
My doctor took me off Levo after going through the same symptoms you are experiencing. Levo has dairy and gluten... The difference was amazing, it took like two weeks for me to started noticing the changes but it was great. I'm on Cytomel now, it was a life saver. But please know that everybody is different and react differently to different medications.
I must be ultra sensitive. I’ve been doing really well, even chased the kids and dog around the park yesterday. Today I thought I’d try a gluten free pizza base with homemade tom sauce and mozzarella with a handful of oven chips. Little did I know the chips had a batter on them. The headache started before I’d even finished, then my energy just drained away.
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