Levothyroxine, Interstitial Cystitis & Cystitis

[janeold25]

I am on 100mcgs of levothyroxine and suffer with interstitial cystitis and recurring cystitis.

I believe levothyroxine is playing a huge role in contributing to the pain I suffer with cystitis.

I stopped my levothyroxine for 1 day and the pain improved by 80%, but of course you start to feel very hypothyroid very quickly. If pain can improve that much in 1 day, how much better could I get of the course of 6-8 weeks.

Does anyone else believe Levothyroxine is responsible for recurring cystitis?

Experiences please

[Clutter]

Janeold25,

Have you tried other makes of Levothyroxine to see whether the cystitis improves?

[janeold25 in reply to Clutter]

No I have not, current brand is Almus. Am seeing endo in couple of weeks!!!!

thank you.

[Kitti1]

Hi I really feel for you. I used to have terrible cystitis so can wholly sympathise. I was diagnosed hypo at 18, now 48. I had a hysterectomy at 33 following which the cystitis stopped. I really was very regularly crippled with it before my op but following Ive been fine. I know a bit of a drastic solution to get rid of your cystitis ! My point is I doubt its the meds, but it is possibly related to thyroid. I have read that elsewhere. I did find drinking copious quantities of cranberry helped keep it at bay before my op. I'm guessing there may be a supplement for that too these days.

But if I were you Id look for other solutions other than stopping your thyroid meds. Clutter may have a point try different brands. But please don't make yourself worse by stopping thyroid meds.

[janeold25 in reply to Kitti1]

thank you x

[MiniMum97]

I used to have recurrent cystitis. Was so frequent (and had it so many times) that they were going to inject dye into me to see if I had kidney stones. Not really sure if I believe in them but tried the homeopathic remedy Apis out of desperation. It got rid of the current infection and i haven't had cystitis since! That was in my twenties and I am now 44. Could just be an amazing coincidence but for a few quid may be worth a shot!

[janeold25 in reply to MiniMum97]

thank you x

[ValTay]

Another good natural remedy is D-mannose. It's a sugar (hence -ose) and it binds to the bacteria that cause cystitis and transports them out of the body. I use Waterfall D-mannose from Sweet Cures. I find that it stops an attack within a few hours if you take it as soon as it starts. The manufacturers say that it even works well for interstitial cystitis as it attracts and draws out the bacteria when they have formed a biofilm around themselves (as you probably know, this is what causes recurrent or intersitial cystitis, which is difficult to treat with antibiotics as the bacteria are inaccessible). I do hope you find an answer soon.

[Foxy23]

I had my bladder stretched after 3 years off suffering every couple of weeks. Can not beleive my lady doctor let me suffer that long before sending me to have this done. I had to have antibiotics on hand to catch it as soon as it started.

I was in my 20s and they said my bladder had shrunk to that of someone in their 40s.. apparently I did not drink enough. I have been fine ever since now in my 50s.... I would ask your gp. I can remember the pain, good luck.

[Pascha1]

I dont think you can blame levothyroxine for this as I am on T3 mono and have just been diagnosed with IC, I have been on T3 mono for about 3 years.

[Beau55]

I had what I thought was interstitial cystitis for 10 years. I was constantly on antibiotics, had multiple surgeries and nothing found, my bladder looked clear and healthy! It was so bad I lost control of my bladder and was constantly passing blood clots (sorry if TMI). However, I saw a consultant in London who said it was a chronic low grade infection and I started on Hyprex. It’s been two years now with 0 bouts of cystitis and no antibiotics. I know everyone is different but if you are really struggling no harm in trialling it from the GP ☺️