Thyroid disease (hypo) and Bladder issues. Has anyone found ialuril treatment effective?

[sunshineisbetter]

I have Hashimoto’s and I’m pretty sure my interstitial cystitis diagnosis coincides with my other thyroid symptoms. I have bouts but UTI type symptoms but infection never show up on samples despite antibiotics temporarily soothing symptoms. I seem to have a flare up every 2 months. I start treatment next week of a 6-8 week course of bladder treatment using the drug ‘ialuril.’ Has anyone any experience of how effective this is? (No horror stories please- I’m nervous enough as it is!)

[RedApple Administrator]

sunshineisbetter, Not knowing your age, this may not be currently relevant to you, but just in case it is, Cystitis, urinary tract infections and the menopause menopausetreatment.co.uk/cy...

[sunshineisbetter in reply to RedApple]

Thank you for sharing. I’m 39 and not even pre menopausal yet (confirmed by blood tests) so not sure if it could be this.

[muirfoot107]

I had exact symptoms, felt like I was on antibiotics for months, no infection showing up. GP referred me to Urology. Urology passed my referral in to gynaecology. Gynae said ‘You need estrogen, every woman over 45 needs estrogen, it makes everything work, including the bladder’. She was right, since starting HRT I’ve never had a bout. Not sure of your age but hope this helps. Good luck. X

[sunshineisbetter in reply to muirfoot107]

Thank you for sharing. I’m 39 and not even pre menopausal yet (confirmed by blood tests) so not sure if it could be this.

[tattybogle]

Hi sunshineisbetter, are you still on a 'too small' dose of Levo with 'too high' TSH ?

(please excuse the early morning ramblings of my brain ... i woke up with the News still on the telly at 2 am ... oops )

Any way .....I wonder if your bladder problems would improve when you are on a decent dose of Levo.

last post you were on 50/75 mcg Levo / TSH still 4 ish.... . how much has Levo been increased by ? ..... are they still being over cautious ?

I notice some similarities between your thyroid history and mine, and my bladders comfort zone seems very closely linked to my thyroid hormone dose .

Like you , my TSH also seemed to be 'stuck' when i first went on Levo , even though (unlike you ) i was put on a decent dose fairly quickly .

Similar history to yours (lost lots of weight shortly after a birth , then went hypo, not diagnosed for 4 yrs but TSH still not very high 5.7/6.8. ..... but i had extremely high TPOab. (2499 )

Started on 50mcg 7 weeks ....TSH reduced to 2.9 (only felt improved for a couple of weeks )

increased to 100mcg 5 months .....TSH 2.5 ( felt better for a month or so )

increased to 150mcg 3 months .... TSH 2.7 ( felt 75% better and stayed that way)

Felt reasonably ok on 150mcg for a year ,..........then not so good again , tried higher dose for a month (175 ish i think , can't remember) but didn't feel any better ,so saw GP and had bloods done and TSH was 0.001 and ft4 was way over range.. so reduced back to 150mcg and stayed there . TSH remained low around 0. 04/0.09 [0.02 -6] on 150mcg.

So it seemed like my TSH got 'stuck' again ....first it didn't go any lower when i increased from 50 to 100 to 150 ... and then it didn't come back up after i reduced back to 150mcg.

My Bladder is one of the first things i have problems with if my dose is not right ... slight overmedication and i will feel a bit like i have cystitis ..... bladder constantly uncomfortable/Tense , urinary urgency, bladder leaks .... but without the burning pain, and no infection found. .... lower the dose slightly and it fixes itself.

All this makes me wonder if your bladder is just not happy with your Levo dose ... but in your case it's saying i'd like a bit more Levo please.

[sunshineisbetter in reply to tattybogle]

Thank you for sharing your experience. This is so helpful. I have just increased to 75mg daily after most recent blood test measuring TSH levels at 3.7. It sounds a bit strange but I time my blood tests the day before my period starts as this seems to be when levels are at their highest. My endo wants to see my levels under 2.5 so I have a feeling that I need to be on 100mg which is unlikely to happen until after the next blood test in 6 weeks. It’s a slow process considering I was finally diagnosed 6 months ago. I wonder why the bladder issues are linked…..do you know?

[tattybogle in reply to sunshineisbetter]

i don't really 'know' , but once you start to realise that nearly every cell / tissue / reflex / organ / process in your body is directly , or indirectly, influenced by your thyroid hormones ... then the question becomes "why would it not be linked ?"

[radd in reply to tattybogle]

tats and sunshineisbetter

Hypothyroidism is associated with reduced GFR that is evidenced by a reduced clearance of creatinine (a byproduct of muscle metabolism excreted by the kidneys). The small amount of T4-T3 conversion which happens in the kidneys becomes impaired when there is inadequate excretory of the kidneys, so not only are we under-medicated but a proportion of the small amount of thyroid hormone we have ends up being peeing out!

Before being medicated I had pelvic pain and constant proteins in my urine, elevated creatinine levels but never any UTI's completely mystifying my GP.

I think also low thyroid hormone unknowingly doesn’t allow us to properly empty our bladder which is dependent upon the efficiency of the detrusor muscle’s relaxation & contraction for both storage and emptying of pee. This all involves several neural circuits, ie sympathetic, parasympathetic, somatic nerves, etc all of which are mediated by thyroid hormone levels .

I like in TCM the bladder is completely connected to the autonomous nervous system. When I had my psychosis which came over me in waves it made my bladder spasm so I ended up wearing ST’s for three days. My bladder returned to normal working order quickly but felt immensely bruised for weeks after. Its never happened since thank goodness.

sunshineisbetter, when you finally become optimally medicated with effectively working meds you may find a whole host of apparently unrelated symptoms simply disappear.

[tattybogle in reply to radd]

When i was overmedicated several GP's were mystified by my urinary frequency /incontinence/ bladder 'tension' / very nasty ?kidney pain / Calcium Oxalate crystals & microscopic blood in urine , and weight loss, and all manor of other 'weird' symptoms, like a massive 'startle reflex' .... they first suspected Kidney stones , but US scan of Kidneys revealed nothing abnormal and no UTI's found .... then suspected Cancer .. referred on 2 week path way, consultant , CT with contrast ,colonoscopy , endoscopy (Cost to NHS so far ... i dunno , a gazzilion quid ?)......

then one tiny little 'semi-retired' female GP with a brain and some observation skills said "hold your hands out" .. et Voila ,fine tremor ... "Has nobody checked thyroid bloods yet ?... they should have done that ... (tutting under breath) i'll do them now , but i think you're overmediacted. Problem solved. (Cost to NHS , one 20 minute GP appointment and a TSH/ fT4 test)

Doh!

[radd in reply to tattybogle]

20 minute appointment!! Now those were the days tats 😊

The waste of NHS resources and the misery of these unnecessary invasive investigations is mind boggling to say the least. I turned down most of mine, only succumbing to things that didn't hurt like an echo cardiogram or collecting 24 hours worth of wee 🤣.