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

[NotElissa]

Are drinking lots of water and are rehydrated?

All my family including me have a constant supply of water via water bottles including my grand kids

[helvella Administrator in reply to NotElissa]

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".

[SlowDragon Administrator]

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 Administrator 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 Administrator in reply to Molmo]

Yes

And also ensure vitamin levels are optimal

[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!!

[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!

[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.

[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.