Newly Diagnosed & Angry....Not Yet Accepting

Hi All,

My apologies first off for what I am sure will be a lengthy post. My congrats and thanks to those of you who get through the whole thing. My name is Carla, over the past couple of months my hubby had noticed some really large, ugly, and scary bruises on me popping up out of no where. I have always bruised easily, but these were VERY different and I could not explain them. Around this same time I happened to have an appointment with my endocrinologist for my Hypothyroid (have had this since 2002). I showed him one of the bruises and he ordered a few blood tests. My platelets were low, 98, my PTT was high, and my bleed time was also high at 14 min (they stop the test at 15min). I was referred to a hematologist. This was in early October.

When I met with the Hematologist the first time my platelets had jumped to 102....everything has been a blur the last 6 weeks or so, so forgive me if I ramble. I tend to ramble even when things are not blurry ITP is an auto immune disorder, so is a thyroid condition...they run in "clusters" is what I am told. Initially I do not think it made sense to my doc. You see I also have Antiphospholipid Antibodies as well as Anticardiolipin Antibodies. I know I have had the AP forever as I always test positive for Syphilis even though I do not have it. That is one of the things the AP does. She told me I may have APS (Antiphospholipid Antibody Syndrome), even though I have never had any of the things it can cause. I think now she thinks it's just the anitbodies. I find it ironic that I have AP that can make me prone to clotting and ITP that can make me bleed horribly....how is this even possible. Am I clotting or bleeding???? Oh, and NO ADVIL....my BFF, stinks.

She has tested me for Rheumatoid Arthritis, Lupus, Celiac, Hepatitis B & C, HPylori, and HIV. She has tested me for some other antibodies as well. Every test comes back negative. I am the type of person that needs to understand why??? There is no why to this...my body makes antibodies against itself. My thyroid and my blood now. I have had platelet readings of (in order) 98, 102, 77, 69, and today, ten days after the last one, 53, since 10/11. I go to the doctor every ten days to two weeks. I worry constantly. I am angry and afraid and I want to know why.

I was given the diagnosis of ITP 10 days ago at my last visit, finally, but I have not yet accepted it. I am trying though. I read that your thyroid can throw off platelets, this was the last thing I had in my arsenal, as I had no more things that it could possibly be caused by. I was told it isn't my thyroid as all levels are normal. I have ITP and I do not want it.

When I first came to this website a couple of weeks ago it was so very overwhelming to me. It still is. I do not know where to begin. I anticipate very soon that I will have to be put on steroids...I also know that my platelets, which have ALWAYS been 250-350, (254 in June of this year), could come up and stay there for a long time.

Right now it seems to be a waiting game and it is awful. I am stressed, angry, worried.....it just sucks. I am almost 39 and feel and look fine. I am waiting for the other shoe to drop and it's not a good feeling. I do not really know what i am looking for, but it feels good to vent that's for sure. I know that i am not yet in a place where i have fully accepted this is real. I do not know how to get to that place. Every time I go to the doc I hope my platelets will be back up and this will be over with...my dreams of being a roller derby girl have been crushed and I find myself being overly cautious. I am going to stop rambling now. Thank you for reading. I know that this is not nearly as drastic as what many of you have been through....and I cannot imagine how that feels. It scares me to watch my numbers keep dropping week after week. Happy Thanksgiving to you and your families.

Carla

Hi Carla, I think you could still be a roller derby girl at platelets of 98! Most of us would kill for that number. Seriously though it's very safe number . Sure keep an eye on it in case it's a downward trend. The AP or APS is more to be concerned about at this point. Several folks here have that too.
Erica

Carla:

We have some things in common. I also have Anticariolipin Antibodies and an elevated VDRL. To be honest, those scare me more than the ITP ever did. Yes, you can clot and have low counts at the same time. I know how strange that sounds. I've read articles that state that 33% of people with ITP also have APS antibodies. One article stated that it's possible that the body purposely responds to APS antibodies by lowering platelets as a protective measure. After I read that, I actually preferred to have lower than normal counts. I take aspirin - prescribed by my Rheumatologist and a Cardiologist.

I understand anger at diagnosis; that is normal for most. It does take time to accept any new diagnosis. Your counts are still okay though. The worst part about having ITP is having to treat it and if you don't have to do that, you're doing great. Even if you do have to treat, life goes on. It can seem scary, but please know that most people live a normal life with ITP. In time, you will stop stressing over it and it will just be a part of life.

I have Lupus too - that diagnosis came 8 years after I was diagnosed with ITP. All tests were negative at first too, then slowly they became positive until I met the criteria. Autoimmune disorders can cluster; that part doesn't seem fair. Managing one should be enough for one person.

Hang with us - you'll be okay.

PS - Ha - none of us wanted ITP. But honestly, if you spin the wheel, you could get something worse!

Hi Carla, I also have some things in common. Newly diagnosed with similar counts. Told the treatment is to just watch and wait.....well that helped with the anxiety NOT... Instead I'm using this diagnosis and making whatever positive changes feel right and blow the numbers- to some extent. From what I've read the Platelet responses can be slow and there's lots of consistently good advice on improving health. Enjoy. Best wishes. Sally

Hello Carla Welcome to the boards. I guess one could say that I've been lucky to have only been diagnosed with ITP, so far! I'm not expecting anything else either! I was diagnosed in February of this year and still have my days of "accepting" it all. It has gotten easier though, the days of confusion/doubt/anger/frustration are getting farther apart, thankfully! I'm gonna believe with you for steady/higher counts!

Thank you all for your responses! It is helpful to hear other peoples experiences with ITP and how they deal with it. I know things could be worse, they always can be. I know that once I start accepting things and being more in the moment, instead of trying to pretend it away, things will get easier.

The looming knowledge of being treated for this is what is scaring me the most right now. I have to somehow get a grip on that reality. I also need to start to make some positive changes in my life....it is overwhelming, so I am going to start slow. Thank you for your support.

Carla

Sounds like you've started getting your head around it. I don't know if this will help but i've always liked it - There are 3 things you can do with fear; run away from it, sit on it or confront it. It's a factual statement. No judgments! I went to a good meditation class last night so feeling philosophical. Good luck and best wishes from a 'diagnosis buddy'. Sally

Thank you sally. I think right now I am sitting on it, hoping to squash it away : ).

I totally get where you're coming from, and i think everyone reacts differently, of course. I agree, i think one autoimmune disease is enough! As far as i know, i've only got ITP, but power to you for fighting back with everything else. I must agree, though, i would love to have your numbers. The only "advice" i have is to just stay positive and enjoy life *right now*. You seem to be a fighter i'm sure you'll be alright.

Take care

Breanna