Wind_Dancer
07-06-2004, 07:33 PM
Hi everyone. I wasn't sure wether to put this in the pregnancy, rare disease, or blood disorder board. I figured this was the best choice because I thought people in here would be the most likely to know about this condition. I was diagnosed with TTP last year, but am in remission. Actually it's been a little less than 10 months since I went into remission. It was my first episode of the disease. The doctors aren't sure what caused it. While I was in the hospital my sister brought me some literature she printed off the internet about my disease so I could understand it better. I noted that TTP was SOMETIMES caused by estrogen related things such as pregnancy, birth control pills, HRT (I think) and I have even heard some people say they think menstrual cycles affect it. I've never been pregnant before. I had never needed HRT. I had had my period for years and never gotten TTP before so I didn't think that was it. I had taken BC pills for around 4 or 5 months. However, it had been nearly a year and a half since I had stopped taking them. I asked one of the doctors about it anyways, and he said he had never heard that that could cause TTP (can't recall if he was reffering to bc pills or if he meant pregnancy, bc, and other estrogen realted stuff in general). After I got out of the hospital I looked up info. on TTP myself and found the same info. about estrogen on several sites. Also, several people online on TTP and blood disorder groups, e-lists, boards, etc. said the same. Some said their own TTP was estrogen related. Still, since the doctor had said he had never heard of it, I was confused. I called my cousin who is an RN and explained that I was getting conflicting info. She, like most people- even doctors and other nurses - wasn't well informed about my disease, so she got one of her medical books out and looked up TTP. She said that it confirmed that TTP could be caused or triggered by estrogen related things such as pregnancy. I THINK she said that a certain percent of estrogen related cases occured in people that never had TTP before. Anyways, she at least confirmed that estrogen could trigger TTP. So, I now knew that it wasn't just misinformation that had been passed to me. Apparently, the doctor I asked had just never been informed of the estrogen factor. I figure he was right when he said it wasn't the bc in my case though, because if I had had TTP for that long ( since I had quit bc about a year and a half before ) and been without treatment the whole time, I prob. would have been dead. The thing is this- I am not sure if I want a child, but I want to know I have the option of having a child. Knowing that some women who have never had TTP have gotten it from pregnancy made me concerned that perhaps someone like me, who had had TTP before, might be more likely than the average woman to get pregnancy related TTP. I mean, I figured something in my body made me more likely to get TTP, so wouldn't pregnancy be more likely to cause it in me? Yet, I HAVE taken bc pills before and I never got TTP from that. So, I thought this might be a positive sign. Since they didn't cause me to get TTP then maybe estrogen isn't a trigger for me. However, I wonder if having TTP before makes one more sensitive to triggers than they were origionally. I also worry that if I took bc pills for a longer time would I be more likely to relapse? I mean is it possible that I just didn't take them long enough to affect me? According to one site I was on ( I can't assure it's accuracy ), TTP that's triggered by pregnancy, usually sets in before 24 weeks gestation. Well, that's around 6 months right? I took bc for about 4 or 5 months, so you would think that if I was sensitive to estrogen, it would have triggered a TTP episode then, but who knows? I am still concerned though. I have had SOME women I met online tell me that their doctors said they shouldn't get pregnant post TTP (after a TTP episode), even though some of them didn't know what caused their TTP, but had no reason to suspect estrogen causes. However, I was told by one woman that her doctor said that if a person's past TTP episode wasn't estrogen related, it was impossible to determine their risk of a relapse due to a future pregnancy. However, I think that she said people who had had an estrogen related TTP episode were more likely to relapse during future pregnancys than the average person. YET, from what I hear, even that does not guarantee that they will relapse. I have heard (online) of women who had TTP as a result of a pregnancy, getting pregnant again afterwords, and having their children without relapsing. Also, while TTP during pregnancy endangers the health of the mother and the child, I have heard that some women in this position, not only recover, but have healthy babies. However, getting pregnant when you know you will likely get TTP is very risky. Since I took the bcp before, I am a little less concerned than I otherwise would be. However, I still wonder sometimes what my chances are of relapsing if I ever become pregnant. I also wonder if I shoud take the progesteroin (not sure if I spelled that right) only bc pills in the future. People can't even tell me what my chances are of relapsing in general. Esp. since I don't know what caused my TTP episode. It was my first episode and hopefully, last. I was told (NOT by a doctor, but by someone who seemed knowledgable ) that it is more likely that the TTP is familial if the person gets their first epidsode as a child. I turned 21 last year, but was still 20 at the time of my diagnosis and recovery last year. So, that gave me hope mine wasn't familial. HOWEVER, after recovering and coming home, I saw one of my first cousins that I rarely see. She asked me how I was doing and then she told me that her son ( my first cousin once removed ) had had ITP, but recovered after treatment that included a spleenectomy. I know TTP and ITP are different, but I still found this odd. Does anyone else? Also, some other people on the same side of my family ( maternal ), though not diagnosed with bleeding disorders, do seem to have some weird issues with blood. So maybe it is familial with me. IF I have the familial form what are my chances of giving it to my children if I have any? I keep getting conflicting info. about pregnancy risks (some say I shouldn't get pregnant, others say it's as safe for me as anyone else), relapsing (some say it's inevitable, some say 50-50 chance, and others say it is unlikely I'll relapse), some say it prob. isn't familial in my case, yet other things seem to point to genetics. Some people at the hospital told me that it could be genetic. I can't remember if the people that told me were doctors, interns, or pheresis nurses. I am confused. I wish the medical community knew more about this disease and I wish I knew what caused my TTP episode or what triggered it. I guess I should just be glad medical science has advanced to the point that they can keep most of us from dieing of this disease. Sorry for talking everyone's ears off and thanks for any replies.

