I saw a urologist 3 weeks ago as I have been suffering with occasional bladder issues- pain, bloating, urgency, slight leaking & strong smelling urine since symptoms related to my thyroid. I also get a upset stomach when it happens and occasionally a temperature. It flares up for a week or so and then subsides. An infection never shows up on urine samples and I’ve had ultrasound scans.
The urologist recommended a Cystoscopy with bladder distention under General anaesthetic to have a look what’s going on and potentially treat the bladder at the same time by stretching the lining by inflating the bladder with air or water.
I’m currently having a flare up but very nervous about the process as well as the disruption of having general anaesthetic surgery before Christmas.
Had anyone had similar and is there a link between Interstitial Cystitis and Autoimmune thyroid disease?
Thank you for reading.
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sunshineisbetter
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I wouldn’t have any further invasive investigations atm if this were me.
Until I was optimally medicated with effectively working thyroid hormone replacement meds I suffered years of horrible pelvic pain and constant proteinuria, which I know relates more to kidney issues but my bladder always felt very sore & swollen, even in the absence of infection. Now everything has cleared up & for several years has remained great, although strangely my bladder still weakens whenever I have a cold or feel unwell.
I know it's easier said then done but I would be putting all efforts into reducing Hashi bodily inflammation, optimising thyroid hormones, iron, nutrients, even the micronutrients that influence mitochondria so much, ensuring adequate cortisol levels and sex hormones if premenopausal. Hashi creates so much damage over the time it takes for us to be eventually diagnosed and it can take a while to unravel but often getting thyroid hormones to work well reverses a whole lot of other unwanted conditions 😊.
I agree with the post above and feel sure that this is connected with your thyroid levels, which may not be optimum. I suggest you get a new test for T4, T3 and TSH plus antibodies and see how good the results are. If your T3 is low, I would suspect that is the problem and you need to look at adjusting your dose to increase it. I suffered ongoing bladder and urinary tract infections and had numerous tests and X-rays but all looked fine. T3 was under range, however, and as soon as I started to take direct Liothyronine, things gradually improved.
I'm tempted to agree with Radd. a few yrs ago I developed symptoms that presented similarly to interstitial cystitis when my Levo dose was wrong (slightly 'too much' in my case).
I also had pain in the kidney ? area, but US scan showed nothing, and no infection.
After a few months on an adjusted dose it went away on it's own, and i now use that feeling (sort of cystitis, urinary urgency, feeling of tension/pain in bladder, but without the 'burning' of cystitis ) as one of my clues to my dose possibly becoming a little high. Not saying your dose is too high, we are all very individual in our dose related symptoms .. just saying that this intermittent problem is quite possibly related to your thyroid hormone level not being quite right for you yet .. or your body not yet been on it for long enough to resolve the problem, as you've only been on Levo for a few months.
In the process of investigating the pain i was having, i had a colonoscopy, and a CT scan with contrast ... in hindsight i didn't need either .. the only purpose they served was to rule out anything cancerous, and give me an unnecessary dose of contrast dye at the same time.
i don't blame you .. it doesn't sound like they really know how /why their suggestion might help anyway... sounds suspiciously like "we need to blow it up like a balloon in order to look at it properly , and blowing it up like a balloon and then letting it down again might just help a bit , you never know ..."
This sounds very similar to a problem I've had for years...I've has several scans and many lab tests but when infection was found it never cleared up for more than a few weeks on short term antibiotics.
Just recently discovered that I have an Embedded UTI after reading about Prof Malone- Lee's work...and more.
Thankfully an understanding GP listened to me ( I'd previously been told to rest and drink plenty water....grrrrr!!) and put me on long term low dose antibiotics ( two types, switched every month) along with Hiprex.
I'm just over 2 months into the treatment and it's not been particularly pleasant but I'm beginning to see small improvements....it can take months to resolve and flares up every so often as more bacteria is gradually killed off!
Just had a flare and getting over that one.
I ended up in A&E in July, they suspected a kidney stone but scan was clear and they did a dip stick test ( clear!) so they had no explanation for the pain I was in and gave me a bag of painkillers and sent me home to rest - having already doped me with morphine!
Symptoms kept recurring so I kept firing urine samples at my surgery until one day a ( new to me) GP rang and said....4 bacteria.
I told him that I'd just been reading about the Prof/ Embedded UTIs....he replied " my thinking too". I could have hugged him!!
I'm now wholly convinced this is the result of long term low cellular T3, likely from birth...in the last few years I've also discovered that I have a form of thyroid hormone resistance and need high dose T3. I have cellular hypothyroidism rather than glandular hypothyroidism which is why my labs gave few clues as to my deteriorating health.
So, yes, I'm sure that there is a link with ( maybe different forms of) hypothyroidism ...given that T3 is needed by every cell in the body in a constant and adequate supply. Why should the bladder not be affected too.
Sorry....bit of a rant, tried to condense it so hope it makes sense!!
Hopefully it might help you resolve your problem
I'd suggest concentrating on optimising your thyroid hormone levels and achieving a therapeutic hormone dose...and avoiding surgical intervention, with a view to correctly medicating the UTI.
This is interesting, my gynaecologist suggested I had sticky Ecoli and sent me off to a microbiologist who gave me nearly a year of various full dose antibiotics! One lot sent my folate into my boots and another nearly blew my Achilles’ tendon. I’m still struggling with UTIs and with a T3 of 12.9 (12-22) also T3 3.9 (3.1-6.8). There is hope for me once I manage to get medicated.
It's not low in relation to the reference range, but it depends on how much T3 your body needs to function in a way that makes you well.You will know your TSH is too high and that you have room to increase your levo dose which will, with conversion, raise your FT3.
If the UTI is uncomplicated and not chronic then this will possibly help
However, to resolve the bladder issue / an ongoing UTI optimising thyroid labs may not be all you need to do. Hopefully it is, but...
If you've read the links I gave you they will show how unreliable UTI tests can be....negative does not always mean there is not a problem!
Like thyroid disease, medics need to treat the patient not only a report/ numbers on a screen.
If the bacteria are embedded in the walls of the bladder they will evade testing...until some of them shed and can be identified. Testing can be hit or miss. Unless the bacteria are sloshing around in the bladder they won't be identified.
In a similar way, I have low cellular T3 ( not understood by most medics) so most of the hormone sloshes around in the blood and, depending on the T3 dose, can return a "normal" lab reading... but still leaving me very unwell because it is not reaching the nuclei of the cells where it gets to work.
If something does not conform to the list of conditions medics have been trained to identify and adhere to they don't often accept they exist...and patients remain unwell.
It is controversial (like some thyroid treatments) and Embedded UTI is not an accepted medical term, but this condition exists and needs treatment....and the care of an open minded medic!
I'm sorry you have been offered the challenging prospect of a cytoscope, only you can decide how to proceed, but it sounds as if this mediceis in a "we just do not know" space without a compass!
How do I request a test for an embedded UTI? When I’ve been treated with antibiotics (despite a negative sample??) , they do seem to do something. It’s all very confusing but it does seem that I always have something low lying so your theory makes sense x
No specific test, just good old fashioned clinical evaluation ...using symptoms, signs,and case history.
And evidence bacteria in the urine... BUT, you may need to test several times before one of these tests catches bacteria that have " escaped" from the bladder wall.
Because my symptoms continued despite clear test results, and I was being told " rest and drink lots of water", which I knew was nonsense, I kept giving them samples until bacteria were found. Fortunately they accepted them! My body was telling me something was wrong and I was convinced that was correct.
This new GP looked through all my urology notes, and saw a continuing pattern of recurring symptoms, short term doses of antibiotics which helped only for a few weeks ...and my general discomfort. This coincided with my asking him about embedded UTIs....and with good luck that he was more open minded than others.
The links I posted will explain further and should allow you to present a case for long term treatment on LOW dose antibiotics...but they must be alternated. Apparently it can take many months but I'm in for the long haul in the hope that it does work for me. It does for others!
Symptoms flare up ( just had one) as the bacteria are gradually killed off. I guess the longer the problem has existed the longer this will take....and I've had problems for years with scans that showed nothing!
I suggest you write down all you want to say/ ask, use the links above as evidence/ quotes. Add a list of your symptoms and case history, and take that to your GP...or one who will listen. When my thyroid function was debilitating I did that otherwise I just garbled my way through an appointment which did nothing to help my situation.
It's only confusing until you get the facts straight.
Listen to your body, it has more information about you than a transient medic!!
I always wash after I poo. Been doing it for decades and have not had any problems. I hope
it's become so routine that I don't forget to do it if I get dementia. I hear it's a big problem in long term care and ladies go psychotic when they have a UTI. Hopefully I don't get dementia.
Also, back before I retired from sexual activity I'd wash before sex, then pee, make sure partner is clean, and pee afterwards. The one time I didn't, I got cystitis.
But until I started
the hygiene routine I had recurrent cystitis then candida from the antibiotics and etc.
It was a full out rodeo of discomfort and problems. I ended up on antibiotic for 3 months, reducing the dose every three weeks and anti fungal as well. It was a nightmare.
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