Has anyone heard of this being linked to auto immune , I am in a lot of pain when going to the loo with the bladder pressing down and it feels like l am being stabbed inside but no blood, low back and thigh pain for the last few weeks after a fall so thought l had pulled something, then today lower bladder pain that l have never experienced ?
Called back gp they asked fro a sample which l offered this morning, then said no infection but call 111 if it gets worse as no appointment tonight ...
appointment tomorrow if l get through the night ....
This may or may not be relevant to you .. but i'll tell you anyway
a few years ago i thought i'd got interstitial cystitis , due to how my bladder was acting ( felt really uncomfortable / constantly tense , constant need to wee ,but not much there ..quite painful at times ~ a bit like cystitis feels but without the burning pain when actually urinating / incontinent if i didn't get to a bathroom instantly ).
This bladder issue had been gradually creeping up on me for a few months.
urine samples showed no infection,, but did have microscopic blood .. and ?calcium oxalate crystals ( think it was that~ forgotten to be honest and cant be bothered to root out he notes)
my GP though i'd got a kidney stone because of the increasingly nasty pain i was getting in my lower back kidney area for a couple of months . (i had thought that was my usual sacroiliac / dodgy back problem playing me up more than usual )
ultrasound showed kidneys were fine , no sign of a stone .
Actually it turned out i was just slightly overmedicated on Levo ... lowered the dose and bladder improved a lot within a couple of weeks and has been fine ever since... 'back ? kidney' pain disappeared within a few weeks too, and hasn't come back
I did have some other more classic signs of overmedication which everybody missed for quite a while .. i was very jumpy / over anxious and catatstrophising about everything /i was a bit clumsy / my sleep was rubbish and i had lost some weight,.. and i did have a fine tremor in my fingers ..
but my heart rate was not noticeably increased .. and my thyroid blood tests were not much different to my 'usual'. ~ The fT4 was a bit over range but it had been higher than that on previous occasions with no issues ... my 'usual' TSH was about 0.05 ish or a bit higher ,, but on that occasion it was 0.018
So ,, perhaps it's worth getting you thyroid bloods done to see how they compare to your 'usual'.. and considering whether you have any other symptoms that could be overmedication.. even if they don't quite fit the classic pattern.
Tattybogle, thank you so much for the reply, I hope that's all it turns out to be as I am in so much pain at the moment lower back ,bladder concerned it maybe something serious x
honestly i thought i was slowly dying of 'insidious cancer of the god knows what' .. i think the GP's did too ( both of them ). they sent me for a colonoscopy ,an endoscopy , a CT scan, a well as the kidney ultrasound ( all were fine, and apparently i have 'perfect' digestive tract ) ... before a lovely elderly GP said "why didn't they check your thyroid bloods first .... hold your hands out .... there see that very fine tremor .. i think you are just a bit overmedicated "
that’s interesting. I have sjorgrens which I believe is auto immune and IC. I’m convinced the two are linked in some way.also suffer what bowel issues. I’m still being ‘investigated’ for lupus/ UCTD . Haven’t been seen in rheum for over 3 years. Gp did a ANA which came back as 1:400 so he re-referred me to rheum requesting an urgent appt. That was 2 months ago… I finally have a date for 27/2! I think I was in a flare of something as my eyes were SO dry and my mouth felt liked I’d been rinsing in bleach.awful. I shall ask at rheum appt if IC is auto immune related. Just wish all these ‘ologists’ would talk to each other and join the dots up. Gp is doing his best but they have limited knowledge re auto immune stuff and are far too busy to do any research it seems!
I was diagnosed with hypothyroidism about 25 years ago but responded badly to Levo but just followed GP's advice...until I became very unwell.
Many tests, scans etc....nothing obvious.
Diagnosed with fibromyalgia, CFS, IBS, diverticulitus and more.
The UTI developed a few years later and 2 years ago I landed in A&E with severe abdominal pain....scan/ no stones. Tests....nobody knew what was wrong with me
Having had UTI's on and off for years I was eventually diagnosed with ChronicUTI.
Long story short ( in my bio) turned out I had low cellular T3...probably all my life....now T3-only.....
i'm now certain that years of unidentified low cellular T3 has caused my CUTI....abdominal pain, urgency and frequency with regular flares, lab tests usually clear....sometime several bacteria found.
UTI is a hypothyroid symptom....not necessarily autoimmune
4 months ago your FT3 was low
Have you tested recently.....low FT3 suggests undermedication
Undermedication and overmedication can sometimes present with similar symptoms.
I was in agony and doped with morphine....they gave me antibiotics.
I am currently on long term prophylactic doses of antibiotic for chronicUTI....my current GP joined up the dots!
I had that in September (no help from the GP). I took over the counter cystitis relief and it really did ease the symptoms. Give that a try while you're waiting for help. It can't hurt.
In my case, my Interstitial Cystitis is likely an immune reaction
Will copy what I've written previously re Interstitial Cystitis.
"Previously I’ve been put on nitrofurantoin but nothing works permanently for me (I’m talking of years of IC pain/bleeding rather than days/months) except for below-listed diet. But this is me, everyone is different.
I’ve also experienced Trimethoprim subscribed for chronic UTI’s, and it was not good!
The one brief but horrible event with the Trimethoprim involved angina and very severe fatigue (in addition to my permanent chronic fatigue) and who knows what other effects on heart/kidneys. (I now have moderate CKD & heart arrhythmias.)
What saves me from suffering permanent pain/IC/UTIs, consequential antibiotics is an Interstitial Cystitis diet prescribed for me by a hospital specialist. (Closest I can find to it is: primehealthdenver.com/inter...
I wish it was given to me years ago before all the unnecessary pain/bleeding/drs visiits/investigations/blood & urine tests/useless physio exercises/hospital Emergency Department visits/Cystoscopies, and stupid procedures like bladder distension & instillation and years of permanent antibiotics that didn’t do anything but cause issues elsewhere (eg kidneys? I now have moderate CKD).
The IC diet I’ve been on for years can be relaxed slightly once your bladder heals and you will know if you have returning pain, to strictly enforce the diet again as with the beginning.
in reply to
Sorry to hear of the struggle but thank you so much for the reply and the diet etc l will look at it all l have never had so much water as I drank yesterday normally tea or wine !i have had a lot of carbs of late and wondered if that was part of the cause, paramedic wants to see me today who every time l go he googles the symptoms ? so not holding out much hope but its not as bad today after no food and gallons of water but hurts when the bladder is full when i move or cough etc , However less pain so thats a win x
I had ÌC a few years back. I stopped caffeine and took quercetin and aloe Vera and it went away very quickly. Coincidence? Maybe. If it comes back a little I remember to take the quercetin and aloe Vera again. I hope you find something that works for you cos it is quite undestandably distressing.
Good morning. Cornwaller’s advice is sound. I would also add alcohol to her list. Urine Dipsticks can have false negatives- (and false positives). The only way to tell if there is an infection present is to send a sample to the lab. So insist on this. You could have sterile pyuria or urethritis which may give negative Dipsticks. Please do not just put up with this. It needs proper investigation.
I used to have repeated UTIs and I too was given trimethoprim. Repeatedly, I would have searing heart, pain, cramps et cetera to the point where my doctor actually gave me a repeat prescription, so I could dosed myself with trimethoprim.
Once I was adequately medicated, amazingly it disappeared.
I still keep handy just in case D-mannose, which is a plant sugar that the body doesn’t metabolise, so it gets flushed out through the bladder and picks up any bacteria associated with the UTI. There are lots of testimonials on YouTube from women who use D-mannose in one form or another. I tend to go for capsules because they are easier to swallow. The pills tend to be huge, but you can also get a powder that you can mix into drinks.
If I get so much as a tingle or a slight weighing down on my bladder, I take D-mannose as a preventative. I have not had a UTI for about five years.
I was amazed- I always approach with a degree of scepticism. Always delighted to find something actually works- but being on a full replacement dose is also key I think. Things work in concert. 😊👍
What Charlie-Farley says! I always have the D-Manoose on hand as an absolutely first class, first aid. Can I just add you mentioned a fall and the possibility of pulled muscles. This is also an all too likely scenario for hypothyroids who have particular trouble with muscles. In this case too, your thyroid meds will need checking. So often all things lead back to thyroid issues.
I thought it was muscle as well until the bladder problem I have not had pain like it, today is much better but hurts when coughing, I will ask for thyroid test and culture when I go from my urine as I don't want to experiance this again if l can help it the problem is we are so complex once things go wrong . This site and the knowledge within helps a great deal your all wonderful X
Well you know what it’s like “the thigh bone is connected to to the knee bone, the knee bone is connected …”. The utterly unusual (and incomprehensible to doctors it would seem) nature of thyroid illness is its ‘wholism’. Symptoms are everywhere in the body. I think many patients report difficulties dealing with stress of any kind. Resilience is lowered. A fall could easily dent resilience. Do take care and I hope to heck you get this sorted out very soon.
I’m really sorry to hear that you are suffering like this.
I had years of not knowing what was wrong with me - very similar to you. Microscopic blood always in my urine. The years went by, I was wrongly diagnosed and given antibiotics after antibiotics- which made me feel awful
Things got so bad that I couldn’t even sit down! I had urethral syndrome on top of everything else. I’m autoimmune hypothyroid and I take T3 only, but when all of this kicked off I wasn’t taking any thyroid medication.
Finally - I went privately and they did a cystoscopy - they found a lot of inflammation in my bladder consistent with IC. Some urology consultants call the condition Painful Bladder Syndrome (PBS). By this time it was ruling my life. I couldn’t walk very far because I needed to urinate to ease the symptoms (very slightly) but took the pain down a couple of notches.
I used to control the symptoms by making a very dilute solution of a cystitis relief sachet (and also by taking separately approximately a quarter of a teaspoon of bicarbonate of soda also in solution) both are very alkaline and this helped to control the symptoms for me. I took the cystitis relief sachet dissolved in a litre of water, and I marked off 200ml markers all the way up the bottle. I spaced out the 200 ml dose during the day - used like meds every 4 hours, mainly because I didn't want to keep taking the alkaline drinks and then give myself a heart issue too!
I also followed the IC diet trying to avoid lots of bladder irritating foods. Tomatoes, onions citrus fruits and alcohol being the worst. You can find all the information on the internet.
I now attend a clinic every four weeks at the hospital and I have an instillation put into my bladder by catheter and that helps me a lot. The idea is that it helps to put some lining back on your bladder. I also take 20mg of duloxetine as a pain blocker and this really helps to control any minor pain that I might have.
Also stress makes the pain much worse- and I know not knowing what is going on with you gives you lots of stress. I was terrified when I first visited the urology department that now treats me. They are so lovely with their patients that they do help you become calmer and with that the pain also reduces.
It is believed that some cause of IC is autoimmune- were your bladder is attacked by antibodies.
I hope this information helps you and I hope you start to get some relief and help for this awful condition that you are experiencing.
So sorry to hear it took so long to get you to sorted it sounds horrible , I did look at PBS last night and thought it might be that so that's helpful to know Radio 2 thank you for sharing your story..
I have had interstitial cystitis. They discovered it by doing scopic surgery and yes it is autoimmune. I don't suffer from it anymore as I believe a higher power either took care of it or it dissipated on its own. It is painful. I was directed to stay on Elmiron.
Hi. I'm so sorry to hear you are suffering with this. I've been putting up with most of the symptoms you mention for many years. Not sure about a link with auto immune issues but i have heard there maybe a connection in some cases.
I had a stent put into my urethra 5 years ago which makes passing urine more tollersble but i still get lower back pain with flare ups.
I appreciate this in not a complete answer but the stent it has made the overal excruciating symptoms of passing urine, nore tolerable.
I wish you all the very best with finding s solution. 🤞
I’m not sure if anyone else has mentioned it but very low vaginal estrogen levels can present as all the symptoms of UTI but without the infection.
I was diagnosed with IC years ago when infact it a was actually caused by progesterone fluctuations. After I resolved that, by having the mirena coil, it completely went away. I eventually had it removed after 8 years and within a year it all started again. Only this time I was peri-menopausal.
My main symptoms were all uti related again but no infection present. As estrogen declines within vaginal tissue it dries out which in turn dries out the tissue around the urethra and bladder walls as they become thinner, which is what causes the burning and discomfort. I requested an Estring which is a vaginal ring infused with estradiol which you insert like a tampon. It lasts 3 months at a time and then you change it. It’s a very low dose of estrogen and it’s applied locally so it’s not systemically absorbed and very safe. This will replenish your vaginal tissue, especially if you use an hood vaginal moisturiser alongside. Again, this has now resolved all the uti symptoms. A way you can gauge whether this is what’s happening is to buy an internal water based vaginal moisturiser such as yes vm. They normally don’t come with a syringe to help you insert but you can get them from Amazon cheaply. If the added moisture inside gives relief from the symptoms it’s likely it’s an estrogen deficiency and you can then request some local estradiol from your Gp. Vaginal estrogen also comes as a vaginal suppository or a cream, it’s what suits you best but I find the ring is the least faff. It’s extremely common in post menopausal women for this to happen but it’s not discussed and so people live on in agony and for some reason Doctors don’t even think about it??? i hope that helps. please feel free to mesaage me if you have any questions x
Hi that's so interesting as no infection which is why they are baffled, however i did notice that area is dryer than normal so will chat with the gp about that I am used to go not thinking about things, but to be fair they are running a gambit of bloods so take care and thank you all again such a wealth of knowledge here xx
Hi Gladrags22, I've had interstitial cystitis for 25 years now. I was diagnosed via a cystoscopy and biopsy. Cut everything acidic out of your diet, no coffee tea, spices, fruit, you need to go for anything that is really bland. Drink lots of plain water. Vinegar and tomatoes are the worst culprits for me. I take hydroxyzine it's an antihistamine, you take it at night because it makes you sleepy, it helps me with pain and frequency of urination. What helped clinch my diagnosis was seeing inflammation on my bladder wall, and an increase in mast cells via the biopsy I take gabapentin for pain, but it can take many hours to help. If you can tolerate it tramadol worked faster and better, but unfortunately it made me really itchy all over. My urologist told me it's an autoimmune disease and it can run in families, my eldest daughter has it too.
More recently I'm taking aloe Vera Capsules, the non laxative type. You want a good dose but without calcium carbonate because that will affect your thyroid meds. I get mine from Tiny Pioneer.
Thank you, hoping things get sorted for you too. Just one thing, I started the aloe Vera in September, I noticed an almost immediate improvement in urethral burning. It is expensive and I'm taking at least 8 capsules a day along with my regular meds. It does really help. Also I don't know how old you are but I'm now post menopause with lots of vaginal issues. Recently I was prescribed prasterone, I had done some research on it and asked my doctor to prescribe. It contains DHEA, and it's in a pessary of hard fat. The fat is very moisturising in itself, but low oestrogen can really mess up your bladder and urethra. My pattern of pain had changed and as your vagina and bladder have receptors for oestrogen it made sense to try this. I was on a very low dose of vagifem previously, and it didn't help much. Prasterone has been a miracle for me within a week there was a huge improvement.
When I have autoimmune flares I often get IC pain and have found, rather to my own surprise, that slippery elm powder works very well to ease the pain although it sounds like you’re in much more of a bad way than me. I tried it because it was recommended by a trusted herbalist and I don’t like taking medication so thought I’d have a go. Couldn’t believe the difference it made. It contains a kind of mucilage which soothes the inflamed tissue.
worth a try then, and I actually enjoy the flavour and take it mixed into warm milk (oat milk in my case). Good for the gut too, which is why I originally bought it. Good luck 🤞
I feel for you! I had IC for twenty years and was on trimithoprim for all that time too. I had cystoscopy’s and was told that no explanation could be found for the IC (with infection, without infection, with blood, without). Roll on to my 50s and I’m diagnosed with hashimotos - seems I had ‘subclinical’ hypothyroid for years and wasn’t told. Levo made me feel even worse (I’m celiac too, so think fillers played a part) and settled into NDT (that I have to pay for - GP refuses to prescribe it despite my CCG having patients receive it). I haven’t had a UTI or IC symptoms got over a year! Is it connected to autoimmune conditions - experience suggests to me it is.
Good luck and I hope you feel much better very soon.
Omg 20 years you poor thing ,I cannot imagine coping with that but it seems that people like us with thyroid and every other terrible linked condition just seem to get on with things and not complain ! I was told when I first got this along with vitiligo that l was interesting?
l might get another linked condition but unlikely l would get more than 3 well I hit the jackpot as so far its looking like 5 what rubbish we are fed ! again it thanks to the knowledge on here that l get anything done, when I first had pernicious anemia it took months of being told I was depressed and being offered pills ! the test is simple and in my mind should be a standard when doing blood .
However they prefer to support the drugs industry than find out the real cause first by the time they did this after telling them l was anemic and being dismissed they finally tested and my level was 90 an urgent call for me to go for injections and now 8 weekly for life !
Thank you for your good wishes I wish you health and happiness
"Diet is one of the primary ways patients can control their IC flare-ups and even help treat root causes of interstitial cystitis." -primehealthdenver.com/inter...
Before I was put on a specialised IC diet, I was tested at a specialist hospital with my bladder being blown up (under anaesthetic) with liquid and it showed my bladder had splits and fissures. This was the cause of constant microscopic bleeding, and the incredible pain.
Yes, sticking to a very plain diet is boring and doesn't seem as simple as taking this or that pill but in my case, it has given me my life back.
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