Levothyroxine takers

[Mariespip]

I had Graves’ disease diagnosed in 2010 at 24, treated with radioactive iodine in 2016 and have been on Levothyroxine replacement since. I have regular blood tests and dose adjustments as required.

My question is whether anyone suffers with digestion issues on levothyroxine even when their TSH/T4 is in normal ranges? I take my dose every morning when I wake and wait at least an hour before eating/drinking, at some point in that window or just after I’ve eaten I get bad cramps and an upset stomach. I’m under review with the GP and nothing untoward detected but just wondering if it’s actually just the levothyroxine or even the brand?

Any shared experiences welcomed. Thank you!

Hi - I was diagnosed with Graves in 1998 and had 2 x lots of radioactive iodine in 1999 and have been on varying doses of thyroxine ever since! I have very bad IBS-type symptoms, which are very difficult to manage.

I was then diagnosed as Coeliac in 2006 - there is a link between the two so you should definitely have regular blood tests re: coeliac.

Recently, I have become lactose intolerant so now have LF milk and cheese - this has helped calm down my digestive issues, but hasn't got rid of them completely.

I just have to manage by schedule around my stomach re: going out and doing things - annoying but I'm not sure I can do anything else..!

have you tried dairy free for a few weeks to see if it helps? Then slowly reintroduce the lactose free milk or cheese. Be careful of milk substitutes though most of them are full of oils and additives.

I’ve taken my at night for over a decade with no problems- why are your doctors dismayed about that? I specifically asked the endocrinologist about it when I was last pregnant and she said there are no issues with when you take it as long as it’s consistent.

I was told by a nurse in my endocrinology team that levothyroxine relies on stomach acid to be effective , which is why it is recommended to take it on an empty stomach.

it is certainly generally recommended to take first thing in the morning. However, my consultant said it was absolutely fine to take at night if one eats early (eg don’t have dinner at 9 and take tablets at 10, but if there’s a few hours gap you’re fine ).

to reply to the original question - I don’t have issues with the tablets (I’ve been taking thyroxine for 2 years, and I do also have Graves). However I am gluten free since 2021 and feel Much better for it digestively (previously stomach pain, cramp, diarrhoea were too frequent occurrences).

I was told by a consultant haematologist who was giving me an iron infusion that gluten and lactose are poison (his words) for people with autoimmune issues likes Graves.