Wondering if anyone has my kind of ITP

I have low blood platelets. Had them during 2nd pregnancy during labor (found out) and could not get my beloved epidural. Never pressed the issue then during 3rd preg. prenatal labs platelet counts were down to 5,000. So had the steroids, IVIG, and Anti-D done throughout pregnancy and finally delivered. Platelets were at 55,000 during delivery and then up to 77,000 after delivery so we thought it was only during pregnancy.. Well 6 weeks later I'm down to 26,000 and my family is freaking out.. I don't have any bruising and don't feel bad. I mean I'm tired but I nurse and my kiddos I have 3 don't sleep through the night all the time. I feel great through.. I am overweight but I'm working on that I'm at 230 right now and was at 267 at delivery..but I feel great and I don't want to take weekly blood drawings because my veins are not happy about all of this.. So does anyone not have any symptoms because a bad platelet CBC?

Welcome to the site. You'll find there are lots of people who post here who have lower than normal platelets and don't bruise or bleed. It sounds like you are doing well with your counts, and you must have a doctor who isn't panicking since you don't say you're on any treatment now. If your count isn't bouncing all over the place, talk to your doc about spreading out the time between CBCs. Good luck!

Thanks maybe I will see if we can space it out. No not in any treatment as of yet. I have to go see a hematologist in a big city and see what they say.

Thanks for replying!

Welcome to the world of ITP. You'll soon realize this site has an amazing group of people with ton's of experience to share re ITP. Seems you're like a lot of us who were Diagnosed (Dx) with ITP as the result of some other Medical event (Pregnancy, physical, oh by the way I've got these unexplained bruises....). As you know ITP doesn't typically make you feel bad, in fact the Rx meds seem to cause more issues than ITP until your "count" gets severely low.

Many ITP'ers live very well with low counts and no active symptoms (nosebleeds, gum bleeds, cuts and the infamous "bruises"). Freaking out is very common across the family and patient. When you first hear ITP it scares the devil out of people until we gain an educated understanding of what ITP is, does, behavior and how it will impact our lives. Please use this site and resources to educate yourself and your family about ITP. The first several weeks and months post Dx are a whirlwind of emotions and fear. Knowledge IS power and as you understand what ITP means to you, you'll gain some level of control over ITP and adjust to your new life with ITP.

Hi Tinitali,

I think that our ITP is similar. I was originally diagnosed in '04 and went into remission fairly quickly with a high dose steroid taper for about 4 months. My platelets dropped again while I was pregnant last year. It was around my second trimester in the summer of '09. I don't think that my numbers ever getting under 10 during pregnancy, but they did drop about a week before my due date. My hematologist treated with high dose decadron 40 mg for 4 days then gave me the option to induce or wait it out. I induced, wound up having a c-section, but also had a very healthy little girl.

Long story short, my platelets never fully recovered. I was doing low dose prednisone while nursing my baby, and that seemed to keep me at a safe level. 'Safe' being above 20. They have been up and down all year bouncing between the 20's and 70's. This August they crashed to 2. I was hospitalized for IVIG 2 tx. this helped me recover for the short term, but three weeks later I was back down to 2. I am back on Decadron 40 mg x4 days. First tx over labor day weekend, and currently doing my second round waiting for my insurance to approve the Rituxan tx. That will start whenever i am approved as the decadron only seems to help for about two weeks.

In the meantime, I stopped nursing...my baby did not respond well to the decadron when I had to go on it in March. I haven't noticed any difference in my levels since I stopped nursing. I had thought that hormones played a role in my levels, but apparently not as much as I thought.

I am usually don't freak out unless my numbers are under 20. From what I can tell I start to bruise around that level. I am not a bleeder, so I don't get the nose bleeds that some others in these discussions talk about. My bleeding is miinor at best. I have gotten blood blisters in my mouth when my levels are under 10. The petechae and the bruises are the worst. I do often feel tired when levels are low. Granted that is complicated by having a little one in the house as well

Sorry this is long. I hope it helps. Having a good Hematologist who doesn't freak out and over treat is probably the best thing for me. I've learned that there is no magic cure! Patience (which I am currently running out of) is extremely important!

Blessings to you!
Bindy

One more thing. I go to appointments about every 4 weeks and have my blood checked. I have permission to call and go get blood work done if I notice signs that my levels are low. I can usually tell because I start to look like a battered woman!!!