Thyroid and IC

[jjlachouette]

My thyroid levels have always appear ok. When I was 16 I had a nodule removed on my thyroid. Had a couple more thyroid nodules over the years which would go away eventually and return. I now have two. I have had IC and recurrent cystitis for the past 22 years after 3 major surgeries - hysterectomy, bladder fistula repair and again a fistula repair. I have not nothing else wrong with my health over the years - I am now 59. I cannot help but wonder if my thyroid is not connected somehow.

[Marz]

Hi - do you have any blood test results with ranges that you could post so others may be able to advise you....

healthunlocked.com/search/i...

The above link will take you to other posts where IC has been discussed. Hopefully you find something useful

[Hidden]

Hello, I have IC and hashimotos, plus arthritis.

I was diagnosed with IC 12 years ago, although symptoms started after a hysterectomy and pelvic repair in 1998.

I don't know of the link other than some urologists think IC is an autoimmune disease. It certainly affects more than the bladder and has been linked to fibromyalgia, IBS, migraine etc. It seems to run in families. My eldest and youngest daughter have been under an urologist with symptoms. My eldest also has hashimotos.

A couple of doctors in this country have said they think IC is a hidden infection. I have difficulty with this as I had years of antibiotics, which never helped. It has always been explained to me as a degenerative, inflammatory disease with no cure. Everything you read says this too. The autoimmune possible connection makes sense to me.

I have found through trial and error that 75 mg of hydroxyzine hydrochloride helps to keep me comfortable, although as you know there are no guarantees. Stress can be a huge trigger for me, for bladder pain.

I follow the IC diet removing anything acidic from my diet, and drink 99% still mineral water.

I take gabapentin and oxycodone for pain.

I was on cimetidine too, for 12 years and I'm positive it helped cause all my anaemias, plus it clashes with absorption of thyroid medication. I weaned off about 4 months ago, whilst increasing the hydroxyzine. It was a very bumpy ride, but I know I did the right thing.

What helped my pain long term was having my bladder stretched under anaesthetic. It breaks up scar tissue and let's you bladder hold more urine. It's painful with passing blood clots for about 3 weeks, but worth it. Before this I was 80% housebound with pain and frequency of urination.

I'm sure you are aware of the COB Foundation UK just Google it if you haven't already.

[Heloise in reply to Hidden]

Wow, that is a whole lot of suffering. Dreadful!

Would you be interested in watching Dr. Bergman's video about bladder health?

youtube.com/watch?v=PUO8UOd...(Not working as expected?)

[win_4ever]

Such a painful condition that cystitis. I used to get it a lot but found putting live organic yogurt on a piece of kitchen towel and placing it in the crotch of my panties really soothed and lessened the pain. Then I found that Olive leaf extract pills taken regularly after some weeks cured it. I don't have it anymore. Can't know whether it will work for everyone but worth a try?

[Nosleepatall in reply to win_4ever]

I just started taking olive leaf pwder and alfalfa tablets , I was wondering if the olive leaf was still working for you?

Kathy hy

[Hidden]

IC is an inflammatory disease, there's no bacteria. Of course with IC you can still get a bacterial infection on top which is unbelievably painful, I've had two bacterial infections whilst having IC since 1998, and I passed a lot of blood and needed medical assistance.

I follow a very strict regime at all times to avoid pain and also infection. I always wear cotton underwear, I always strip off into a nightie in the evening. With IC anything tight around the waist can cause pain in the bladder. I would never wear tights, and most importantly if you have sex, I empty my bladder before, wash too, get my partner to wash in the same product E45 Wash, empty his bladder too. Then I'm afraid immediately after empty my bladder again, wash in the coldest water I can stand, this takes out any inflammation, then I drink half a pint of still mineral water and take 100 mg Gabapentin. It's so important to keep your bladder flushed out after sex. Before this regime, I would have at least 5 days of horrible bladder pain. The cold water really has clinched it.

If I have an IC flare I often have to pee into warm water as the pain is so bad. I've had two bidets installed at home for cleanliness and pain relief. In IC your urethra can get very swollen and painful with the inflammation, one time mine bled, I really should have gone to the emergency room. I just sat in cold water most of the day because I was continually losing urine, and I took 900 mg of gabapentin at a time to get any relief. Sometimes that doesn't touch the pain, as it can take up to 2 hours to kick in. So I have oxycodone too which makes me feel sick as it's a synthetic morphine, it's a controlled drug. I have to put buccastem under my top lip which helps the nausea.

I've done a pain management course and one thing I learnt which really does work is take paracetamol with your pain drug as it accelerates the delivery and strength of the pain drug.

For me hydroxyzine, never letting my urine get dark, following the IC diet keeps me more comfortable. The bladder stretch I had under a general anaesthetic to break up scar tissue helped enormously. With IC your bladder hurts when it's filling with urine because it's stretching the cracked bladder lining. With a bacterial infection for me it feels quite different, the pain is after you've stopped urinating and you get that stabbing pain in your bladder.

IC pain can feel like heavy period pains to flat out labour pain where you can get out of control. I've only called a doctor out once, it's something you have to learn to live with. When I went to a self help group it was so depressing as many of the people had had their bladder removed and wore a bag strapped to their thigh. I also met some very stupid people who were still drinking alcohol and coke, and suffered a lot.

Doctors still have no clue about IC being very different from bacterial cystitis. I had to find a urologist myself 60 miles away who researches into IC, he was the man that quite honestly saved my life. I saw him a few years later at a conference on IC and he remembered me which I thought was amazing. He's such a compassionate doctor that he sends out wheelchairs to the car park, to bring any IC patient in pain into his clinic.

It's rotten knowing IC is for life, but like any chronic disease you learn to manage it.

One last thing I must say is never ever drink cranberry juice if you have IC, it's a disease not bacterial. Cranberry juice for an IC patient would be like drinking bleach, it would do untold damage to an already diseased bladder.

[amssmith7]

What is IC I too have had various blader infections operations etc .

[humanbean in reply to amssmith7]

Interstitial cystitis.

[humanbean]

Regarding the nodules, you might find this link of interest :

stopthethyroidmadness.com/2...

[amssmith7 in reply to humanbean]

Just seen it will take wee look x