Thyroid and Interstitial Cystitis (IC) and Recurrent Bladder Infection

I am about to write an article on the above topic (deadline 7th Feb). If anyone has had one or both of these conditions prior to a thyroid diagnosis and they improved, or if anyone has had one or both of these conditions now and would be interested in giving me a case history (either written or over the phone), please do let me know.

Best wishes, Lyn

35 Replies

  • Yes, yes.... Lots of bladder infections / cystitis episodes when seriously hypo! In fact I could tell as soon as one was on the way and within a matter of a couple of hours I would be doubled up in agony, peeing blood and with a high temperature. On most occasions I would try the over the counter remedy first and drink plenty of water but only a course of antibiotics would touch it. Frequently I'd finish the course of antibiotics, feel fine for a few days and then it would be back :( and of course after having taken antibiotics for a few weeks I would get thrush too. Nice. Not a lot!

    It was at its worst after I had a coil fitted as within the first 3 months I had cystitis 6 times... Utterly miserable. I asked my gynaecologist if the coil could be responsible? She very condescendingly said they were not in the same place and couldn't possibly be related... I said I did actually realise that, but they weren't exactly a million miles apart :) anyway... for whatever reason, as soon as I had the coil removed, I got far fewer episodes of bladder infections. She did eventually concede that the heavier periods (from the coil), could have made me more run down and susceptible to infection. I also saw an endo at around that time and got my dosage of Levo increased which undoubtedly helped.

  • Very interesting. I recently saw a gyn with some issues and she felt there may be a connection between that and my frequent uti's. I guess your doc was wrong about no connection.

  • Hi, I too get a lot of bladder infections and cystitis but I had them even before I was diagnosed hypo. I was prescribed all sorts of antibiotics to clear it - mostly Trimethoprim.

    I wasn't as bad as Mi55Red however, where I was peering blood and had a high temperature and I didn't have any bad cramps but whenever my wee was tested for infection - as in the dipstick test - they always came back with some sort of infection. I've also been getting leukocytes in my urine samples too - not sure why or what this means.

    Funnily enough the last time a nurse diagnosed me with a bladder infection she happened to point out my goitre, low blood pressure, pale/tired complexion and the leg pain I had come to see her about in the first place.

    Jo xxx

  • Hi Lyn. I have had IC for years now. I have lots of trouble passing water too. It takes several attempts to empty my bladder. I didn't think it was connected to hypothyroidism. I have had my bladder examined by a hospital consultant and he said it may have to be stretched and he saw the evidence of the IC. I am being treated with nightly hormone pessaries which do help, called Estradiol. These do help. Wishing you a speedy recovery.


  • Both my mother and I are hypo - mom is 77 and I am 52. As a child from ages 3 to 10 I had chronic bladder infections, frequent hospitalizations and was on all sorts of antibiotics (as well as tons of juice and massive doses of Vitamin C that my mom put me on). Hadn't had a bladder infecection for years, until I contracted one in 2010. I was diagnosed with underactive thyroid in 2002, my mother was diagnosed several years earlier (after experiencing years of chronic fatigue which they later called fibromyalga and which I ascribe to her underactive thyroid). My mother too suffered through the years with bladder infections and cystitis.

  • This sounds exactly like my story without the mom connection.

  • Hi Lyn, interestingly i do get reoccurring cystitus before and after i was diagnosed with Hashimoto's. I'm also unable to take tablet form supplements as they irritate my bladder and i'm unable to pee properly during day and will wake up in the early hours of the morning in chronic bladder pain having to pee.

  • I had this problem both before and since being diagnosed for hypo. but thankfully I am much better since cystocele operation in August.

  • I have had recurrent cystitis for years, swapping antibiotics when I become immune. I had heavy periods from the age of 11 with awful PMT and I suspect an undiagnosed thyroid problem from a young age., also having had frequent bouts of cystitis from my teens. The cystitiIs became more frequent after, first a caesarian section, then a hysterectomy and removal of right ovary by 30 years of age, then the removal of left ovary at 36 because it was attached to my bladder. The urologist advised stretching the urethra which did not help matters. The general surgeon advised that the problem was adesions after surgery pulling on the bladder, but he would not attempt to separate because surgery causes more adesions in those susceptible. I don't know whether either suggestions are correct or whether both are right. I may continue to have episodes anyway and surgery is drastic.

    A different urologist has suggested putting a 'lining' in to coat the bladder (don't know the correct term). Is anyone familiar with this ?

    What is involved in the cystocele operation? I have had diagnosed hypothyroidism since late 20's (now 59) and my health has gone downhill more since I can't get Eltroxin, despite the claim by Mercury Pharma that their Levo thyroxine is the same as Eltroxin. I have chronic cystitis at present and I'm at my wits end.

    Any advice gratefully received.


  • A cystocle op. is performed when the bladder prolapses into the vagina and this can happen after a hyster. The bladder is stitched back into position - it's a painfull op. but it was necessary for me. Have you seen a gyny.? I am also not convinced about Mercury Pharma being the same as Eltroxin so I am splitting a 50 tablet. Cystitis is dreadful -I find it helps to take a double dose of Cystopurin to zap it as it reduces acid.

  • Luvena prebiotic was recommened by my urologists. You have to use it several times a week before bed if you having symptoms and then back off to once or twice a week as needed. It is an over the counter at pharmacies. It helps me a lot. I have to avoid caffeine, tomatoes, spicy foods and citrus too ..

  • Hi lyn, I am still waiting for official diagnosis of hypothyroidism, but I was a patient of Dr Skinner, who diagnosed me. So I hope I am a suitable person to comment. I have had recurrent bladder infections since the age of 16, so 6 years to date When they first developed I had about 12 infections in two years, one of which developed onto a severe kidney infection. For which I was hospitalised. Thankfully I did have a remission period of about a year, but then I developed a nasty uti which spread quickly to my kidneys, so I had to be admitted to hospital again. Since then, I have had only a few infections over the years, but recently I developed a bladder and kidney infection again, luckily I didn't have to go into hospital this time , but took a months course of antibiotics.

    I find that if I do not go to the toilet regularly, I get back pain in the kidney area, and I cannot hold my bladder for long without incontience. I am too young to be having bladder incontience! I haven't seen a urologist though, so although I believe it connected to my thyroid, I cannot be sure.

    Hope this helps,


  • I'm so sorry you have this and you are so young! I have heard of people getting better once they were on the correct thyroid medication and dosage so there may be some hope. I didn't realise there were so many people with thyroid that had IC though so I'm glad I've been asked to write this article....

  • Hi lyn, thank you your reply, it's good to hear they're may be hope for the future. I wish you all the best with your article.


  • I used to get mild cystitis as a child, and much worse as a young adult. These were infections and treated by potassium citrate as a child, and by antibiotics as an adult.

    I am now late fifties and have had IC for about 5 years, which I control by diet, the two problems are similarly distressing but definitely not the same thing.

    I was diagnosed as hypothyroid in my 40's, but think I have probably always had a sluggish thyroid, I started taking levo in my early 50's, before the IC started. I have recently upped my dose as my levels just hover on the edge of the range and I was still getting energy crashes from time to time, so perhaps an increase in levo will help the IC symptoms but I do not hold out much hope.

    My feeling is that taking thyroxine seems to keep my health just about ok, but that it takes very little to put it out of balance, so that I also have to eat healthily to maintain an equilibrium. (currently wheat and grain free, no caffeine, no alcohol , not much sugar, no processed food). It would make sense that having bladder problems could be linked to low thyroid in a general sort of way in the same way as you can have a whole host of other symptoms, as your body is just not running at maximum efficiency, making it more susceptible to infection and irritation.

    If upping my dose improves the IC and allows me to indulge in coffee, chocolate cake and champagne from time to time I will be very happy, and will let you know!

  • Dear Lyn,

    I had about 18 months of ( undiagnosed as I don't think it had yet been named) interstitial cystitis before being diagnosed with Hashimotos, and recurrent bladder infections in the last 3 years of 16 on levothyroxine.

    Since changing to T3 only 2 years ago under the guidance of Dr P the bladder infections have stopped

    Completely. ( Touching wood as I write since they were so debilitating. )

    I'm happy to give more details on the phone if you like.

    Thanks for doing this. I've written to my GP surgery about it but they can't currently allow themselves to think about such things.


    Phone number noted - but removed for your protection. :)

  • Excellent news - let's hope it continues. Once I start writing the article (soon), if I need to, I will give you a call. Lyn

  • My frequent UTI s aren't (I'm told) caused by thyroid (I was hyper. for about 6 years + treated with Carbimazole), but since the thyroid problems were "cured" I've had unrelated bladder infections. Hospital investigations were thorough (and caring) . Urology prescribed strong antibiotics on permanent supply through gps, AND self-catheterising 3 or 4 times daily.

    A specialist nurse came to my house to teach me: I was a hopeless pupil for 3 weeks, using nhs long, invisible, floppy catheters, until the hospital gave me some nhs short, stiffer, green ones, easy to see in the mirror. This was a revolution --- they worked instantly ! BUT these brilliant quick ones (No wastage) are slightly more expensive than the useless cheap ones (all wasted) and I was told I would not be allowed to continue on prescription. The manufacturers' websites quoted the exact costings so I figured out the difference in price : buying the green ones for 1 patient (remember, NO wastage) costs the nhs only 12 pence more per week, 48 p per month, £ 5 . 76 p per year. Multiply that by the number of female bladder sufferers and ....... it must still be cost - effective. I bought some myself, but persuaded the gps to prescribe.

    Revolution in my life = no water retention, no incontinence, no bed-wetting or broken sleep to check, fewer infections, fewer anti - biotics, plus a more normal work routine and a new social life. I really recommend self catheterisation, preferably with Coloplast's "Speedi - cath Compact".

  • See reply from Snecs

  • I was haunted by recurrent cystitis all through my young adult life. Would try to catch it early with cymalon powder from the chemist and sometimes I did. But if it really got a hold it was absolute agony and I would have to go up the hospital with a specimen and then take antibiotics. Went on for decades. Finally stopped after sub total hyst. Go figure.

  • I've only just seen this post so am hoping that it's not too late to reply.

    For UTIs / bladder infections I would highly recommend the natural remedy D-Mannose - for further details see It really does work wonders without the side-effects of antibiotics, and some people also find it helps with IC.

    To treat a current infection you have to take a high dose for two or three days and then gradually reduce it. Many people also take a low maintenance dose to help prevent new infections occurring. The only down-side that I know of is the price - it is expensive - but well worth it, particularly for those who have taken a lot of antibiotics in the past and have developed various side-effects to them.

  • Hi Everyone,

    Just to let you know that I have now written the article and sent it to the The Cystitis & Overactive Bladder Foundation. I'm not sure when it will be published but if you belong to this organisation, hopefully you will see it soon!

  • I had hashimoto disease ; thyroid cancer, complete thyroid removal at 19. Two years ago given interstitial cystitis diagnosis and I'm 38 now. Very strange connection. Wondering if there is a connection. I STILL struggle with my thyroid levels and medicine dosages.I see an endro doc and my oncologist 2x a year. the I.C. is horrible. Some days are worse than others. I hope you see this !

  • Hi stargirl16,

    So sorry to hear that you are poorly. Have you looked at our document, Getting a Diagnosis? This gives lots of tips on how to improve things...

  • Hi I have recently been diagnosed with an under active thyroid and have been having bladder problems for 5 months now so I think your article would really help me. Have looked for it on the COB foundation website but cant find it - would you email it to me? Many thanks...

  • Went through the same as all of you (no bloody urine though). YEARS of antibiotics only to get an infection 3 days later. Finally referred to a urologist who put me through some very embarrassing test only to find that my urine was too alkaline so the bacteria was able to multiply quickly in my system. Told me to take megadoses of vitamin c. 1500 mg a day. I found certain chewables worked better and faster than a supplement to swallow. I still get that feeling that an UTI is coming but i take 1500 mg vitamin c and within a minute of two the symptoms are gone. Had no idea this condition could be related to my Hashimotos. Very frustrated and angry that i have been misdiagnosed for more than half my life. Seems very unfair that i have to still pay those medical bills..

  • I also suffered from recurrent uti's when my hypothyroidism was at it's most severe. My primary care physician referred me to a urologist because she was concerned about how many uti's I was getting. I believe it was mostly related to my thyroid levels because since I saw an endo who got me on the correct dose of levothyroxine I have only had an occasional uti as compared to several a year before that.

  • Hi,

    Wow I'm going through the same hell at the mo. Been diagnosed with hashimoto's 6 months ago and in the last month I've had the most awful uti symptoms, a week of antibiotics didn't help as no infection in urine.

    It's the worst thing ever & I've had some pretty rubbish health symptons lately!

    Weirdly my symptoms disappeared during my period which makes me believe it is all hormone related!

    Any advice/help would be amazing, life is hard at mo :(

  • Started a dose of Levothoroxine January of last year dosage 125 works great until Jane started gaining white bag and experience reoccurring UTIs $.13 June had not thyroid checked again they said it wasvery low normal but won't raise my dosage I am sure there is a connection my skin is dry hair is coming out in my brush and I cry at the drop of a hat if you could help I would be forever grateful thanks so much

  • Hi Lemonssss

    Perhaps you could send me an email and I can send you some info - Explain that you are Lemonssss so that I can recognise you. Lyn

  • Lyn would you mind me emailing too? I'm very down with the uti problems at the mo :(

  • Hi Diva_4, I've just gone here to answer someone else but I'm not sure if I sent you the information. Did you email me? Lyn x

  • Hi Lyn.

    Could you please send me the same details as my symptoms are very similar to Lemonsss.

    Thank you.

  • Hi doireannw, If you send an email to enquiries@thyroiduk I can send you some info. Lyn x

  • Hi I was diagnosed with under active thyroid in February this year and have had two urine infections

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