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!

No issues taking thyroxine, I’ve been on it 25+ years.

I do, now I’m older, suffer cramps & there can be some ‘urgency’ but, seemingly, that’s common in peri/menopause. I also know the gastrocolic reflex is normal for many people, but I never had this happen until I was older either.

Have you tried keeping a food diary to see if there are foods that trigger it more than others? I believe there is a link to coeliac and thyroid disease, and you can get false negative blood tests so would need a biopsy to diagnose. Is the GP referring you to gastro?

Ive been taking it for a decade and no stomach issues. But that doesnt mean that you wont

I've been on Levothyroxine all my life (just over 40 years) and have never had those issues. I don't tend to wait an hour before eating (in fact I just have it before I go to bed).

I’ve been on it for 20+ years with no issues but I take it late at night as in the morning I have other pills that can’t wait .

Is it always the same brand of Levo? Some people have issues with some of the fillers in certain brands.

Could be nothing to do with Levo, look into the connection between Hypothyroidism and Gluten, could be what you are eating afterwards.

I take Levothyroxine. Have done for almost 15 years. It doesn't affect my stomach in any way.

No I haven't had any stomach issues.

I take it in the early hours of the morning, so it’s a few hours before I eat breakfast. Have not had any problems but I have been on it for a year and a half.

Thank you for all your replies. No onward referral to gastro at the moment. I did try cutting caffeine and dairy but haven’t tried cutting gluten.

I take alternative 100/125mg doses and the 100s and 25s are different brands. The pharmacy seems to give me what they have in stock as the 100s can change too. Not sure how I can track it back to brand use but was just curious whether anyone had managed to that.

I remember the endocrinologist I originally saw in 2010 recommended annual coeliac and diabetes screens but my GP doesn’t think that is necessary. I think I will do as suggested and start keep a better food diary and also switch to taking it at night again as that is what I used to do.

I had my last baby in July 2023 and don’t remember any issues in pregnancy and think they started up afterwards so have been blaming hormones but it has been going on for so long now, I think I need to look elsewhere.

Thanks again everyone.

They have lactose in them and I'm lactose intolerant so yes, they give me stomach cramps too. I have to take them at night to the dismay of my doctors.

Yes, since taking them I seem to have developed a dairy intolerance. Whether related or coincidental I don't know, and when mentioned to the GP they couldn't say for sure either, but I was not intolerant before, so I really feel it is the medication.

I’ve taken it for about 20 years. Last year I had similar problems with cramps and stomach discomfort after eating. I was tested for H. Pylori and it was positive, the eradication regime got rid of the symptoms.

I've taken levothyroxine since 1990. I haven't had stomach problems.

I take it in the evening at bedtime and have disregarded the advice of 30 minutes before breakfast or coffee. I have to get myself out of the house for work. Doctors have repeatedly told me off and I have noted there has never been an issue - in 40 years.

@Mariespip 12.5mcg tablets have been introduced. Easier than a 25mcg every day.

Last year, as part of a diet, I stopped eating wheat on the basis that if I said no wheat that meant no bread, pasta, cakes, biscuits, etc. Within three weeks my dandruff, puffy ankles, sore joints and eczema disappeared. Definitely a wheat intolerance I'd say.

I didn’t know that about the 125mg @RosesAndHellebores . I will chat to the pharmacy and see what they stock/look around.

I’ve submitted an e-consult for a medication review. My next bloods are due at the beginning of Sept.

@Mariespip the pharmacist can't switch you to 12.5mcg unless the GP changes the prescription.

@RosesAndHellebores Thank you. I did realise that but thought I might do the leg work for the GP in hunting somewhere that stocks them :).

I have mine in morning and wait an hour for drink (other than water)/food. Have had it for 30 years now. Never had GI issues in the morning. Have had GI issues of an evening for years but they gave Mebeverine and seemed to resolve the worst of it.

15 years+ and not had digestive issues related to it as far as I’m aware.

I did have severe acid reflux problems a couple of years ago, ended up taking Omeprazole and having a endoscopy 🤮 I’ve concluded that’s down to age and my diet, and by not eating late in the evening and being more careful about what I eat, it’s mostly gone away.

I take it first thing, and I don’t usually eat breakfast, but as a previous poster said, you have to get out of the house and sometimes there just isn’t time to leave a gap. My blood tests are very stable.

This is all over the Health Unlocked thyroid forum, for some people, some brands don't agree with them. Take a look on there, as the very knowledgeable people there will advise.

(Fellow Graves' Disease sufferer, currently in remission).

Hashimoto's here.

It's taken ages to figure it out but just found out I'm lactose intolerant. Going to leave it a few months to settle then try cutting out wheat too. I love my (varied) food though and it's a bit of an adjustment.

I have hypothyroidism and am on T4 and T3. I drink lactose free milk and avoid gluten where I can. I'm not obsessive but avoid bread and pasta etc and this helps with bloating and stomach cramps. I think it's related to my hypothyroidism and not the tablets if that makes sense. I think most people with an underactive thyroid benefit from cutting out wheat and lactose.
I am a bit sceptical of those that say the lactose in their tablets cause GI issues as the tablets are tiny so surely a tiny bit of lactose shouldn't cause huge problems.

Oh and I've just switched to Arla lactose free milk which tastes exactly the same as normal cows milk. I still eat cheese, yoghurt etc which I think doesn't have much lactose.

I've been on it for 20 years with no issues. I do get tummy cramps and looser bowels but am well into perimenopause and most of these symptoms happen at specific times of the month so I'm almost certain it's related to that.

Fellow Graves sufferer here, digestive issues do go hand in hand with Graves, especially if it's been active for a while without treatment. Hopefully it will settle down in a while. But definitely give cutting out gluten a try, gluten sensitivity is quite common with Graves. Hope you feel better soon 🙂

I am lactose/caseine/whey milk proteins intolerant, but I don’t have any problems with the tiny amount in levothyroxine and seem ok on limited amounts of lactose free milk. There are a few lactose free brands of levo but one of them Teva, doesn’t agree with a lot of people.