Hypothyroidism and problems with levothyroxine

[Unforgettablefire]

I’ve been on levo for years now and it gives me awful diarrhoea anyone suffered with this? It’s gotten so bad I now have piles!
My lab results were under so they increased the dose and the diarrhoea got worse.
I stopped taking the Levo (I know, but I honestly felt better off it and I really needed a break)
I was called in for bloods and my levels were so low I had a phone call that day and I promised to start taking it again, and they’ve refused to believe it’s the Levo causing the stomach issues even though I only get some peace when I stop them.
So about ten days back on the Levo and it’s back. I’ve tried the fodmap diet, brat diet, digestive enzymes and lactase and nothing is helping.
I have different brands so tried the mannitol free one then the lactose free one and it hasn’t helped. I’m sore every day and I’m given creams for the piles caused by the diarrhoea but nobody’s interested in helping me fix it.
I don’t know where else to go now and I’m struggling to cope. I’ve tried manuka honey too, and kefir, all different biotics and nothing helps. Ive now got some psyllium husk coming now and will try that. I’m not taking any of these things at once and I’m giving them time to work.

Anyone else had this and found a fix? I really can’t live with this forever.

I’m on levothyroxine and definitely don’t get this side effect. Could you try loperamide daily to see if that helps? I know a lot of people with hypothyroidism cut out lactose however I think the tiny amount of lactose in a levothyroxine tablet is unlikely to have an effect. You could ask for the liquid to see if that helps but I think it’s really expensive so your GP may not prescribe it.

Thanks. I very much doubt they’ll give me liquid as they won’t accept it’s the levo I’m sensitive to. And they even out in my notes I’m “blaming them for piles” I’m not it’s something in the tablets that’s causing the diarrhoea.
Every time I stop taking it I’m ok. I’m sure it’s not the lactose or the mannitol as no matter what one I take I’m still the same. It’s driving me mad not knowing why this is happening.

How frustrating op, I just googled as I’d never heard of that and take levothyroxine.
https://www.goodrx.com/levothyroxine/levothyroxine-side-effects

apparently it’s a really common side effect. Can you send any info to your GP or have you tried that? Is there a referral you could have to maybe some on who specialises (not sure what)

Been on 150mcg for years and I'm the opposite, bunged up as anything. What dosage are you on and when do you take it?

I paid to see an endochronologist privately. He moved me from Levothyroxine to pure T3 medication. Levothyroxine is a type of T4 medication that your body has to convert into the active type T3. I now pay to see him every 3 months and pay for the T3. Feel fabulous. Maybe this is something you could consider OP?

@TofuTuesdayI told the pharmacist who does my reviews, he said it’s not down to the thyroxine but I know it is. When I stop taking it I’m back to normal in a week or so.

@JustJugglingCats I’m on 125 and take it in the morning on an empty stomach. About an hour after my morning brew. I normally eat pretty late so taking them at night is off the table. Is your dose ok? I think you get bunged up when you’re under? I did a little bit but my tsh was 38 by that time.
@PurpleReindeer2I’m seriously considering doing that. I really don’t care what my lab results are I really feel unwell especially since they upped the dose as well as the stomach symptoms. The pharmacist was very upset at my numbers though when I stopped taking it.

@Unforgettablefire You must wait 3-4 hours AFTER caffeine before you take your levo, the combo is really bad as caffeine prevents proper absorption. Especially if you have milk in it. You can do it the other way round and take your levo then wait an hour to have your caffeine, but not the way you are doing it! Caffeine can give you diahrrea anyway (I drink black coffee and am STILL bunged up, but hey ho! 😂) so this may be the problem.

My dosage was great, then I hit menopause, a few other health issues cropped up at the same time, so I'm back to sorting it all out at the moment... sigh, the joys of the mid-50's! 😂

Unfortunately I have found that many GP's are woefully under educated about the many nuances of levothyroxine and really don't go through the many do's and don't's of taking the medication. I don't blame them, they have so much to know about so many conditions that they are bound to not be clear on everything, it's just not possible.

@Unforgettablefire you need to take levothyroxine on an empty stomach, an hour or more before food and avoid caffeine for a minimum of four hours.
Also caffeine and food stop medication absorption.
Can you ask your GP for the capsules form of levothyroxine?

I can’t tolerate one particular brand of Levothyroxine and I’m not alone. It’s TEVA brand.

It contains acacia, and acacia is something that many people can’t tolerate. It makes me really unwell.

I use an independent pharmacy and the pharmacist is able to get hold of other non-acacia Levo for me.

Sorry ladies I should have added I take it about four hours after my tea. I don’t have breakfast anyway just my tea then Levo three or four hours later.

@AnAutumnCrowTeva is what I’ve got. Those and accord and the brand changes every month.
The pharmacist who does my reviews is the gp pharmacist and he’s having none of it when I told him what’s going on.