Doing well on Elmiron

[ICyuck]

Just wanted to say, I am one of the lucky ones Elmiron seems to work for. I do still sometimes have symptoms in the late evening, and right before my period.

I had been reading up on the theory that progesterone might have something to do with IC, and about how some women either get better or worse with pregnancy (when progesterone levels are quite high.)

I thought - well, time to do a little experiment on myself. See if progesterone makes me better, worse, or the same. I found that when I started to get symptoms at night, I greatly improved when I took some of that OTC progesterone cream and applied it. Might just be placebo, only been using it a couple of weeks so don't really know for sure yet, but so far so good.

Not sure I want to use it before my period because the dropping of the progesterone levels is what signals the body to have a period - don't want to stop my periods, figure the body has periods for a reason (besides to torment us, LOL).

Also I had the most wonderful appointment yesterday with my Doc - I really am lucky I found him as my urologist. I was worried when he expressed doubt about my reaction to the Elavil, but I was able to look in his eyes yesterday and see that he really did care. Plus he even offered to test my urine for cortisol, when I talked about the study done on cats and how maybe IC might someday be linked to lower than normal cortisol levels (I had read that many of us show lower than normal cortisol levels in our urine). So today I'm peein' in a jar (oh so classy< LOL!) Sheesh the things we gotta do when we have IC....

I hope everyone here finds their miracle.

ICY

[ICyuck]

P.S. Not sure if it's just a coincidence or not, but today increased my dose to 2 grains (building up to find the optimal dose) of Armour and for the first time ever, no bladder pain tonight (usually it starts up around 6 in the evening.)

IC is sometimes thought of as a fibromyalgia disease, and I have read some stuff by Dr. Lowe who is controversial but specializes in fibromyalgia treatment.

He says he thinks fibro patients don't convert T-4 to T-3 very well and that's why everything hurts so much because cells can't work well without T-3. I read something today that said, low cortisol levels can lead to a problem converting T-4 to T-3. And I remembered that I read IC patients often have low cortisol levels in their urine and lower than normal cortisol response to stress.

So I thought...hmmmm..who knows, maybe someday IC will be thought of as a sort of endocrine disease more than anything. That might help explain why it seems like a systemic disease, not just the bladder but lots of problems otherwise too.

ICY

[readingmom]

ICY,
I have been convinced for a while that IC is some kind of endocrine system problem. Glad to hear someone else thinks the same. Also, just to let you know;I read somewhere(not sure where because I read everything)that not having a period really doesn't hurt you as long as you have one 2-3 times a year. So if the progesterone cream helps, and it causes a problem with your periods you might want to ask your doctor if it would be o.k. to use it all the time. Just a thought!
Christie

[ICyuck]

Thank you so much, Christie, I might ask a doctor about that! Because another benefit from only having a few periods a year for me would be that my endometriosis wouldn't be such a problem then either...

Thanks so much! Well, if IC is an endocrine problem I sure hope they figure that out soon so we can all be cured of all our ailments! I want a cure for all this like yesterday, LOL! I mean, for me, Armour seems to be the cure-all thing. But maybe it's not that way for all people.

You know though, I read that they are now thinking (lots of debate about this, the experts seem not to agree on anything) that a TSH above 1.5 is strongly suspicious of hypothyroidism and that often women at that level or higher who are placed on Armour find they have a greatly increased quality of life.

Back before 1975, they diagnosed hypo just by a patient's symptoms, then dose again by how a patient felt. Then the TSH test came along. There are some doctors who feel that was a step back because now docs are treating only the TSH (which is so wide it includes many with thyroid disease as "normal") and not symptoms and these doctors believe many cases of CFS, fibro, etc. are actually cases of hypothyroidism that are not being treated. I thought it was a fascinating theory. It might explain why those diseases have been so much on the rise - maybe before 1975, women with signs of those diseases went to the doc, got some thyroid medicine and went away cured and happy. But since 1975, they get told, it's all in your head, here's some pain pills, antidepressants, etc.

Wouldn't it be a real shame if it turned out the TSH isn't really a good test for determining hypothyroidism, and that many women who could have benefited from a trial of Armour never got a chance to take it because of the TSH test replacing clinical judgement? What if - hypothetically speaking of course - every single woman on this board could be cured by taking Armour, but they can't get it because their TSH levels aren't high enough for a doctor???

ICY

[ICNJess]

Hi ICY,

Glad you are feeling better. Hope you continue to do well.

Love,
Jess grouphug kissing angel

[tillysav]

Hi ICYuck,

Glad you are feeling better and thanks for posting your success. Information and stories like this are always encouraging. Hope you continue to feel better.

This is probably a stupid question, but what is Armour? Thank you, Tilly

[Raelyn]

I am very interested in the IC-Thyroid connection. Have been on Armour thyroid for 45 years and have had IC for 6 years. New guidelines for TSH normal range is now 0.3 to 3 per the Amer. Assoc of Clinical Endocrinoligists.
I have reduced my dosage from 4 grains to 3 in the last year and have not had much change in my IC. Does anyone take spirulina. My uro says it seems to help.