Levothyroxine and Interstitial cystitis

[Philly2748]

Not sure if anyone can help me but is there anyone else who has interstitial cystitis and also an underactive thyroid? I am after some advice. I was diagnosed with IC five years ago and get flare ups now and again but my recent flare up was the beginning of March and I am still living with an agitated bladder day and night, I am just wondering if the cause of this flare up could be anything to do with the Levothyroxine tablets I am taking as I started those this February and got a bladder infection on 6th March which has left me with this IC. Just hoping someone can throw some light on why I cannot get my bladder to settle back to normal

[HelsS]

Hi - I have had hypothyroidism which was first diagnosed about 18 years ago when I was 23 and after years of taking levothyroxine my own thyroid gland did seem to 'kick back in' and I didn't take it for many years, although back on it now since I had a baby in 2011. I also got diagnosed with IC when I was about 29 years old after a bad bout of cystitis and I'm sure my stressful job in London and maybe not taking quite as good care of myself as I should've done didn't help. Interestingly, and thankfully, though over time my IC flare ups became less frequent, I did give up my job and move back to the country, I ate healthily (although didn't give up a glass of red wine as this strangely helped me) and was also prescribed a very low dose Diazepam as some of the symptoms seemed to be related to muscle spasms. IC is absolutely miserable but I rarely have any flare-ups now despite being hypothyroid and back on levothyroxine. I'm not sure whether my IC was ever related to my hypothyroidism but I'm sure things could be linked due to hormones, stress etc. Interestingly though recently I've been having trouble (mainly gastrointestinal) relating to taking levothyroxine and have been prescribed liquid levothyroxine instead which doesn't contain the fillers which levo tablets do. I was also diagnosed as coeliac last year. In view of my experiences I think your experience with levothyroxine may possibly relate to your IC but I'm not a doctor and would hate to advise you, I really just wanted to say though that my IC has just about gone and it's wonderful and I'm sure with time and looking after yourself yours might disappear too fingers crossed, but it might be worth speaking to your GP if you do feel it's related to the levothyroxine as your hunch might be correct. Really hope you feel better soon.

[Philly2748 in reply to HelsS]

Thank you so much for your reply, I now don't feel so 'on my own'. I think the 'muscle spasm' you refer to is what I have as it feels like my bladder and urethra are just in an agitated state so I am wondering if that is what I have been left with after my last two bouts of UTI (back to back) which caused my IC to flare up. What is the Diazapam you mention, is it a muscle relaxer? Hope you don't mind me asking.

[HelsS in reply to Philly2748]

Diazepam is actually a 'tranquiliser' but taken in very small dose it can be used as a muscle relaxant, I was on the tiniest dose but it really did help I think. Another relaxant is called Baclofen which I had briefly but I don't get on terribly well with medication and found the Diazepam didn't have side effects really (although it is classed as an addictive drug potentially so you're closely monitored). I think it really depends on what your IC is caused by and whether there is actual bladder irritation (visible by cystoscopy) or if it's more muscle spasm related. I think mine started as irritation following a bout of cystitis and then my body almost seemed to 'remember' the horrid clenching experience of cystitis and my muscles wouldn't relax. There is also a natural sugar called Waterfall D-Mannose which is produced by a company in York which is said to help and I know a friend has taken it, and I did try it. I think one mistake can be taking lots of cranberry juice given the sugar content but again it most probably depends on what causes the IC as there must be some research re the positives of cranberry juice! I'm sure though there are links between having a body which tends towards an 'inflammatory' response, I definitely have a tendency towards inflammation, but at least there's hope that it can also die down, it just took mine a little time but it does now seem to have lost it's grip thank goodness. Good luck and I'm happy to help if I can but just don't want to give any wrong advice being just a patient rather than a doctor..

[Bagpuss]

I just want to tell u my experience with the bladder issues ..... I do feel there is a link to thyrpid .... I'm not sure precisely what it is but maybe inflammation as previous poster says also I wonder if it's due to the weakened immune system.

Anyway I have had what I thought was IC for seven long years ..... Then took a long course of antibiotics for pnuemonia and bladdet got a bit better. I investigated this further and found two doctors in UK who treat 'IC ' as a chronic embedded infectuon and all the inflammation comes from this constant infectuon which is hidden from routine urine tesrs by hiding itself in a biofilm.

I have been treated by one Of these doctors simce last nov and An out of pain for the first time in seven years. I was in constant 8/10 pain with frequemcy urgency and severe sensitivity to foods and drinks.

I did everything I cud think of before this - diets , acupincture , pelvic Physio , herbal protocols , iridology , cranial osteopathy , chiropractor , yoga , relaxation , plus different meds.

i don't believe now that I had IC - I think my new Doctor is right. I simply had an infection that had buried itself in a biofilm and escaped detection. Short courses of antibiotics are not effective.

In my experience , it is good to reduce irritation as much as u can by drinking bottled water , eliminate sugar of all kinds , eat pure fresh diet. No alcohol. Ice was betterthat heat for me. And d mannose is often very gelpful if infectuon is E. coli.

As you mention recent infections , it may be worth you consideting that you may have embedded infectuon NOT IC.

Thyroid meds can inflamme an already sore blsdder as they in ease blood flow and open the blood vessels. I know some people find their repeated infections go away when they get the thyroid optimised.

I hope something here is helpful and please PM me if you are interested in getting the doctors details.

Hope u feel better soon.

[raggydolly in reply to Bagpuss]

It's interesting what you say about many cases of IC being a deeply embedded infection -I've read this before and thought there was a lot of truth in it. I've suffered with UTis and bladder irritation since I was a child and have had three painful episodes since April of this year. In fact I'm sat here typing this in pain once again!

D-Mannose didn't help me in the slightest. It eased the symptoms slightly but not for more than a day, so I suspect my problem isn't e-coli related.

[Philly2748 in reply to Bagpuss]

Hello. Thank you for your explanation. Two questions come to mind, firstly what long term antibiotic was it that you were put on please? I have read up about biofilm and will discuss with my urologist later this month when I see her (though I know she does not 'go along' with this line of thinking. Also what do you mean when you say you had your thyroid optimised? Sorry but not heard that term. Thank you so much, this is all very informative and useful

[krzekat in reply to Bagpuss]

I would love to hear more about the treatment from the Dr who finally was able to help you.

[Bagpuss]

You do need to take copious amounts for quite a while I think ...... But it may well be a mixed infectuon of differebt bacteria and there is research out there biw aboit how bacteria can mutate and change and even communicate to alter their environment so they can take over !

I honestly thought I had IC bevAyse I was in constant psin ..,, I didn't have infections coming and going like some women I have met but my prof bases it on synptoms , history , and numbers of epithelial cells and white blood cells. I did often have white blood cells in urine tests but was always told negative for infectuon.

If you have a long history of detectable UTIs then it may well be that the short courses of antibiotucs have never cleared it up.

I know that many hypothyroid people do have blsdder issues and the gut may also be a reason .... I'm not sure.

You could research biogilm Infections and I think it's Hultgren in the USA who is doing Lots of research around this.

Also more info on the COB ( cystitis and overactive bladder foundation ) forum ..... Other people also getting well by this route.

[Bagpuss]

P s other things people often gave to examine to get really well are hormones , thyroid function and meds , gut function and healing , diet , stress responses , pelvic floor dusfunction. If you have had pain for a long time our muscles can go into ' protective guarding ' and this can take some unravelling too !