If you have a serious problem with iron deficiency

[severtt]

My case was diagnosed several years ago. I went through all the treatment options, basically, including instills twice daily. It went into remission for about a year after a blood transfusion. Well, I took iron supplements, but my iron levels became dangerously low again, and the IC came back. So I received another blood transfusion (each transfusion was for 4 units of blood), and all the symptoms have gone away again. I don't understand it. Neither does my urologist. But I thought I would post this for any women with this problem since it might help. I posted after the first transfusion, but I wasn't so sure as I am now of the odds being so overwhelmingly favorable for the affect of the transfusions affecting my IC

It also explains maybe why none of the traditional therapies worked out for me.
My urologist had given up on me, and I was in a low, low point of my life. I couldn't hardly put my clothes on without being tired, and had the most horrible pain level imaginable. So if you have this problem, get it checked out! Don't go without checking and suffer as I did. I may or may not be highly atypical for IC, but there may be others like me, and I don't want anyone to suffer like I have if it can be avoided.

[earthlady]

I was just curious, if you don't mind me asking, why you had the blood transfusion the first time? Was it a proposed possible treatment for IC, or for something else non related? Sorry you had to go through such a drastic procedure but you must be terribly glad that it has helped the bladder problem.

[severtt]

The problem both times was iron deficiency and anemia

I had a component of my blood related to iron which should have measured out at 75 show up in blood tests at around 5. So I was anemic and iron deficiency was the diagnosis both times. Hope this helps.

[severtt]

Forgot to add

I forgot to add that I am having to see specialists to find out why this happens.
I had a colonoscopy and saw a hematologist the first time and was put on
an OTC iron supplment tablet called Slow FE. The colonoscopy did not reveal anything significant. It will be up to the hematologist to find out why I getting anemic.
I probably will also get an upper GI this time also. If necessary, my doctor has told me that it is possible to receive iron through IV treatments.

[earthlady]

If you ever find a specialist who has an idea as to why these transfusions have helped your bladder problems please let us know. I'm really starting to feel that there are several different causes of IC and it may be why some people are resistant to the generic treatments. Our causes may not all be the same, so it seems logical that we would each need an individualized treatment.

[healingthoughts]

I have iron deficiency anemia too.
I have been taking an iron supplement for the past one month, but haven't noticed any improvement in my IC symptoms

If iron deficiency was a possible cause of IC, I would think there would be a lot more people out there with IC.

Anyway, I am happy that you were helped by the blood transfusions.

Anything to get relief from this annoying and painful condition....

[sarahz]

Re: If you have a serious problem with iron deficiency

Hi I know this is an old thread - but i'll try anyway...can i ask if the 'component' of the blood that was low was ferritin? or were you diagnosed as anaemic, ie low serum iron. My ferritin levels were 17 2 years ago and the range given was 8-150, so quite low. I wasnt told this was a problem but know I am starting to think it is.

Thanks

Sarah