Overactive Bladder when taking Levothyroxine

[AtlanticB]

Has anyone experienced any bladder issues when taking levothyroxine? I've been taking it for nearly 20 years, but recently diagnosed with coeliac disease and since removing gluten from my diet, I am finding I am having bladder issues, but only when taking levothyroxine. I stopped taking levo for a few weeks, and all the bladder issues resolved. Since resuming at a much lower dose, these issues have returned!

[TiggerMe Ambassador]

I found dairy to be the culprit 🫤 and I became dairy intolerant when I started taking Levo

[AtlanticB in reply to TiggerMe]

I have been wondering if dairy is an issue for me, possibly chocolate too! But I have no issues when not taking levothyroxine!

[TiggerMe Ambassador in reply to AtlanticB]

It became more pronounced when I started taking levo, I swapped to lactose free Vencamil and my stomach is happier though still can't tolerate dairy, there is a theory that thyroid hormones via the stomach might inhibit lactase production but I can't tolerate casein either 🤷‍♀️

[AtlanticB in reply to TiggerMe]

Thanks for the reply. I will see if I can get a test to see if I have other food intolerance besides gluten.

[TiggerMe Ambassador in reply to AtlanticB]

With dairy I noticed a difference after just 3 days of cutting it out, twitchy bladder gone!

[AtlanticB in reply to TiggerMe]

I'll give it a try, thanks.

[jgelliss in reply to AtlanticB]

Interesting topic. I personally think that caffeine plays a large roll in needing to go to the bathroom.

[AtlanticB in reply to jgelliss]

I've completely cut out caffeine as it definitely makes things worse. So miss my morning cup though!

[Obsdian in reply to TiggerMe]

Similar to me but dairy started bothering me at the start of symptoms not the start of levo.

[TiggerMe Ambassador in reply to Obsdian]

tbh I've always had a bit of a twitchy bladder but then you just assume it's the norm when it's all you've ever known... 3 short days later and I realised it isn't! Only took me 50 years to that find out! 😳

[AtlanticB in reply to TiggerMe]

Glad you've finally found out.😊

[Sunflower535]

Interesting. I have been having similar issues. I can't find the culprit. Blamed chocolate and carbonated drinks which might be the problem. It comes and goes. What brand of levothyroxine are you on?

[AtlanticB in reply to Sunflower535]

Currently trying Vencamil. It's driving me mad, I've been trying to figure this out and wondered if it's a combination of things, such as dairy and chocolate, not agreeing with the levothyroxine. 🤷‍♀️

[Sunflower535 in reply to AtlanticB]

I just started on vencamil and thought maybe it might be better for me as I was in accord before that but no it probably has been at its worst in a long time. You get one symptom sorted out and then get two different ones. Thyroid problems not easy to sort.

[HowNowWhatNow in reply to Sunflower535]

Am not sure but I think rice aggravates mine. I wonder whether it’s just such an absorbent product that it soaks up all of the liquid / other useful stuff around it. I remember when a friend’s Labrador ate a bag of uncooked rice and they had to put the dog away, without access to water, for a few days. The theory being that if it swallowed water, the rice in its stomach would expand more than was healthy for the dog!

[HowNowWhatNow in reply to HowNowWhatNow]

Ok, maybe for a day or so! My memory isn’t what it was pre-thyroid joys

[SlowDragon Ambassador]

what are your B12 levels like

Low B12 can cause bladder issues

When we start on Levo low vitamin levels can become more pronounced

But it could be because you are only at moment on low dose levothyroxine

Levo doesn’t top up your own thyroid levels, it replaces it. So until on decent level of Levo we often become more hypo on starting doses, because your own thyroid stops making massive much Ft4 and Ft3, but you’re not on high enough replacement dose

How much levothyroxine did you start on

What were TSH, Ft4 and Ft3 BEFORE starting on levothyroxine

Have you had blood tests since being on levothyroxine

[AtlanticB in reply to SlowDragon]

I'm not sure what my levels were initially, but they were within the normal range (been taking levo for 20 years), then I stopped taking it as felt I was hyper after removing gluten from my diet. I don't know what my B12 levels are or my TSH, F3 or F4 (I'd need to ask for these from my GP). I've had 2 lots of test results recently. My levels were very low after being off levo for 8 weeks. Last test results were improving after restarting. Started on 25mg (on 23rd Nov) and built up to 50mg. I've to increase to 75mg, but really struggling to get to 75mg every day due to the bladder issues, which are really affecting me. I'm really not sure what to do for the best, but I'll make an appointment with my GP to discuss again.

[SlowDragon Ambassador in reply to AtlanticB]

Removing gluten probably increased absorption, ideally you would have tested to see what was happening before changing anything

And then , assuming it showed over medicated…..reduced a little rather that stopped

Has brand of levo changed

Vitamin levels likely to have crashed when you stopped Levo

It can take months to build back up

Request GP test vitamin D, folate, ferritin and B12

Come back with results and ranges when you get them

You could have an embedded UTI

Get in-depth testing

[AtlanticB in reply to SlowDragon]

Thanks, I'll speak to my GP.

[Molmo in reply to SlowDragon]

interesting that it doesn’t top up. Is that why when I have an increased dose of levothyroxine I feel great but then seem to go back to feeling tired?

[SlowDragon Ambassador in reply to Molmo]

Yes

And also ensure vitamin levels are optimal

[helvella Administrator]

It is vitally important not just to glug and glug water.

He said his wife had previously tried several other diets and had been told to drink four pints of water a day by Mrs Nash.

He said: "Just days after she started the Hydration Diet, she began to feel unwell and started vomiting.

news.bbc.co.uk/1/hi/uk/7520...

Advising to drink "lots of water" could be interpreted as meaning to drink an extra glass or two through the day, or four pints, or five litres. Who knows what is meant? None of us have any idea how the person you have responded to will take it. It is inappropriate and potentially dangerous to advise to drink "lots of water".

[Molmo]

I’ve never had bladder issues of any sort in 62 years until…levothyroxine came into my life. I now have to beat the I min mile run to the loo if it even crosses my mind. I’m increasing my pelvic floor exercises while brushing my teeth, and working on calm thoughts once the urge is there. It is helping slowly.

[AtlanticB in reply to Molmo]

Isn't it strange! I've been doing lots of pelvic floor exercises too! The joys of middle age is the gift that keeps on giving!

[HowNowWhatNow in reply to Molmo]

Pilates is a great thing for me here. As are isometric exercises like walk squats. And yes.. not fun!

[Cornwaller]

I have found that quercetin and also aloe Vera helped reduce the symptoms - not sure if anyone else has found similar?

[Franjy]

I have the opposite problem - discovered that it's Lectin - not gluten - that causes the urinary reaction and it's never a good idea to just stop Levothyroxine - can buy over the counter fizzy stuff to clear up any bladder probs.

[HowNowWhatNow in reply to Franjy]

Which fizzy stuff do you mean, please?

[Franjy in reply to HowNowWhatNow]

In Australia it's branded as "Ural" - no idea what it's called overseas. Quite pleasant to drink. Settles the bladder in no time at all. As for breads - Gluten free still contains Lectins - but it's possible to buy lectin-free flours which are automatically gluten free. And I make flatbreads in short time. Satisfies the need for "fillers". Recipes galore on cooking sites.

[helvella Administrator in reply to Franjy]

Ural Lemon is:

Sodium bicarbonate, tartaric acid, citric acid, sodium citrate

Other ingredients include:

Saccharin (in the form of sodium saccharin), lemon flavour

ural-australia.com/ural-pro...

A very quick (and definitely not complete) look didn't find a UK equivalent but someone else might know of one?

[HowNowWhatNow]

really interesting. I have been having bladder issues. Never thought to connect the two!!

[AtlanticB in reply to HowNowWhatNow]

I've had mild bladder issues for a few years, but not like now and also been on levothyroxine for nearly 20 years. It's only since removing gluten that they have really started to trouble me. If I don't take my levo for a day or two, they completely resolve, but obviously I have to take the levo, so just trying to figure out what is going on. I've cut out dairy today, as someone on here suggested that could be an issue, and definitely been better today, so will trial that and see how I get on. Apparently you can become lactose intolerant after removing gluten, but it's normally only temporary until the gut heals! It's just all a bit of a nightmare!🤯

[StanleyThyroid]

Not directly related but I have had bladder related issues that have varied over time. Before removing gluten I would always be going and taking that out improved things but it's always worse if I eat something I shouldn't.

Last year I had covid again and during recovery I started needing to go maybe 20-30 times a day. A visit to the gp for something else and it was pointed out that I had oral thrush but the candida also gave me athletes foot, red rash on my neck etc. Researching more I found out it can also impact the bladder function. 6 months on its better but only partly gone. Now resolving to a strict diet to clear it out!

[AtlanticB in reply to StanleyThyroid]

Glad to hear it's improving for you.😊

[StanleyThyroid in reply to AtlanticB]

I hope you find a solution too. Please post if you do

[AtlanticB in reply to StanleyThyroid]

Thank you, and will do.

[HowNowWhatNow in reply to StanleyThyroid]

I know someone whose long term thrush was fixed after taking Symprove. A very expensive but well researched probiotic. I also know someone whose IBS was cured by it.

When my thrush & UTI issues were dovetailing closely - taking iron supplements completely wrecked my bowel and bladder health before I switched to 3 Arrows - I considered Symprove but once I started taking 3 Arrows I didn’t need it so much anyway. The only thing that has helped my bladder issues has been taking time off sugar and reducing carbs.

[StanleyThyroid in reply to HowNowWhatNow]

Thank you that's great info. I will look that up

[tattybogle]

yes , becoming overmedicated on levo directly affected my bladder. nasty pain in kidney area , calcium oxalate chrystals in urine ( investigated for kidney stones but none found) , slight incontinence, constant feeling of tension in bladder , (felt like having cystitis but without the burning pain) feeling of tension not relieved by going for a wee. over frequent urge to urinate . basically symptoms which seemed to fit with interstitial cystitis.....

i had other symptoms of overmedication too , but not immediately obvious as such and fooled both me and the doctors for several months , mainly because heart fate was fine , but i was over anxious, extremely jumpy if startled , overthinking , overfrequent bowel movements.

these symptoms all gradually resolved within a few months once on a slightly lower dose levo . (i was taking 150mcg reduced to 125mcg)

i had previously been ok on 150mcg for about 15yrs , but following menopause this dose gradually became a bit more than i needed, but as they crept up very slowly , i though all these symptoms were 'something else'.

[Franjy in reply to tattybogle]

I was told 2 years ago by a doc that I didn't "need" Lexo" anymore since the blood test came back as non-thyroid - I stopped taking them - only to have increasing probs that I just didn't connect. Am back onthem since a recent test came back as dangerously low. I now avoid all sugars and grains/seeds products. And lots of Hashimoto people have similar test results over a period of time - it's about being aware and talking to a sensible doctor who is never going to tell a patient that suddenly they aren't suffering from a shonky thyroid. Hashi's is a permanent condition. Like Graves. I suspect age also has a lot to do with levels.

[tattybogle in reply to Franjy]

i 'm not understanding the point you are making there Franjy... i'm aware it's a permanent condition, autoimmune hypothyroidism can't just get better , the thyroid is damaged and will only get more damaged over time. My point was that the amount of thyroid hormones our body needs will change as our bodies change , a healthy functioning thyroid would self adjust to our needs , but when taking thyroid hormones we need to adjust the dose . I don't know for sure why i needed less now i'm older (not every one needs less , some stay the same ,and some may need more) but it's presumably a combination of lower estrogen levels after menopause meaning lower thyroid binding globulin levels (so less T4 is 'bound' allowing more to be 'free') and the fact that in my 30/40's i had a very physical lifestyle/ job and as a result i had lot more muscle mass than i do now ... my lifestyle in my late 50's is much less physical. so i no longer needed as large a dose as i did previously ,and the symptoms of excess crept up on me.

[Franjy in reply to tattybogle]

Oh! I didn't intend to make a personal comment on your posting - just a general comment - um - it seems we are on the same page - I'm 80 now and, yes, I probably need less. Sorry I confused the issue.

[tattybogle in reply to Franjy]

no worries franjy, i realised afterwards that it was probably a more general comment

[AtlanticB in reply to tattybogle]

Thank you for sharing.😊

[Topsy33]

I have never understood why they do this!

How hard can it be for any medic to grasp that your bloods and symptoms just may have improved BECAUSE you are on Thyroid medication!!!

It's the meds what's done it!....not some miraculous invervention from the deep unknown!

Would you stop diabetes meds because blood sugar had, on the day of the test looked OK?

Did they take the day off on the day of the lecture?

I suspect most of them know next to nothing about most conditions apart from what they can glean in a 30 second glimpse on a screen....so most of their 'decisions' are taken in ignorance and out of context.

[sparkly]

Low estrogen due to menopause can also be a cause of weak bladder/ dry vagina. Both HRT and/or localised estrogen (cream used down below) can help with this.

[Tayn]

Vit B6 specifically may cause urethral irritation in some.

[Astrido in reply to Tayn]

I found the Thorne b vitamin supplement made my bladder super uncomfortable if I took it more than twice a week. Have changed brand now but agree the B vits can cause problems.

[Lucyintheskywith]

Ooohh... I read this with interest. I've taken 75mg levothyroxine for 23years now & I'd estimate around 12months maybe more changes in bladder control. Definitely change since I had pneumonia in May 2024 ...I now have bladder cramps since 26th December 2024. I drink lot of water and only x2 cups coffee/tea(greentea) per day. Consultation 24th January suggested I have an over active bladder ( I have unhaemolglised blood in my urine) .. nothing 100% diagnosed with me yet as they want to use a camera to confirm (😱)... talked about medication 💊... I'm already on levothyroxine 75mg and rosuvastatin 5mg... don't really want another medication! Any suggestions welcome!

[Caradoc1a]

I'd cut out all caffeine. Green tea has caffeine. If I have any caffeine , there is no point going out for a walk as I leak. I had early menopause early 50's due to total hysterectomy and dry vagina meant bladder issues even with manic pelvic floor exercises. I use oestrogen cream internally and now 1 pump of estriol gelna day. It's helping.

[Joiesmom]

Yes, 100%. This may sound crazy but I started adding a pinch of Celtic Salt to every glass of water. This seems to be helping (not sure how). I do NOT seem to be retaining water. It has reduced the need to wee at night.

[TiggerMe Ambassador in reply to Joiesmom]

Need to check cortisol and aldosterone levels, adrenals need salt, both low and high cortisol levels increase the need to pee

[Lucyintheskywith]

Interesting! I've got issues and it's something thar sounds similar to yours

[AtlanticB in reply to Lucyintheskywith]

Hi, at the moment all my issues seem to have settled down. I've started taking my levothyroxine over two doses, so half in a.m. and half before bed, which seems to have made a huge difference and my levels in recent thyroid test had improved, not quite where they should be, but hopefully will be by next blood test in six weeks.