So many questions and anxieties

I know with time your fear lessons! The first time you hear ITP it is scary than after a while it truly just becomes a part of your life.

When I was first diagnosed the doctors said if my platelets ever dropped to zero I would die. For the longest time I had nightmares. Than I hit zero and lived that is when I stopped being scared and realized ITP will be a pain in my butt for the rest of my life! I'm going on 19 years with ITP! I use the term roller coaster when I think of ITP you have your ups and downs and times you maybe scared but it is all apart of the "coaster of life". Sometimes we look a little funny (spots/ bruises) sometimes we do not look different than anyone else. Life goes on.

Had a thought about you bruising more than you think you should be. You said you were a new mom and you had a toddler. I wonder if you are not bruising a little more because you have a toddler they have a habit of running into mommies for hugs. Having to pick them up and cuddle or put them to bed or even give them a bath.

Thank you Winnifred. I really needed this right now. I feel like I am on an emotional rollercoaster for sure. my counts were up last week at my appointment to 84000. But I get one tiny symptom of a possible lower count and I get sad. I'm not really scared now, just so sick of the ups and downs. And I've only been dealing with this for 4 months. I'm sure it'll get easier and it won't mess with my emotions so much eventually, but right now it's got me down.

My dad has been pretty sick, plus I work and have these two little ones to be a mom to. And yes, maybe the extra bruises are caused by my son. I have always bruised easily. And his legs are full of bruises too. That, of course, makes me wonder if it's just because he's 3 and a boy or if it's something more. I'm confident though that if there's something more going on with me that my hemo will figure it out.

I am trying to remain focused and positive and I'm looking at what I can do to get healthier. I still worry a lot about if what I'm eating or doing is preventing a steady rise in my platelet count. Simple things that I never thought twice about before now have me rethinking... Should I color my hair? Is that kitchen cleaner toxic? Should I make my own weed killer instead of buying the stuff from the store? Tomatoes and garlic affect clotting, should I avoid them? Should I cut dairy and gluten because they cause inflammation?....the list can go on and on!!!

Taz:

You can make some lifestyle changes that you believe to be appropriate, but try not to over-analyze everything. You'll make yourself nuts because you can't avoid everything. It's unlikely that the thing you are fearing at any given moment is a cause for drops. Platelets fluctuate...that's just normal. As long as they are not trending downward, it's all good.

Thanks. I don't really stress about that stuff much. I did a lot at first though. But I still wonder about it often, just not to the point of craziness I'm making some lifestyle changes. Nothing too crazy, because I simply can't add more stress right now. But I want to do what I can to keep my family healthy.

I'm concerned. My counts have been fluctuating a lot I think. The past two Wednesdays I've had my cbc and they were 84000, then 94000. However I know in between there they went down a bit because of new bruises and a tiny patch of petechiae.

Well I just woke up to use the restroom and noticed a weird clump in my mouth. I spit it out, and it was a little clot of blood. Then I spit out more blood for a few more times then rinsed my mouth good a few times. I think it was my gums. I had this happen before at higher counts, minus the clot. But I'm freaked out by it.

I have no other symptoms and that went away within a few minutes. With it being the weekend, I'm not sure if this warrants a call to my hemo's after hours line in the morning or not. My husband thinks I'm overreacting but said if I need peace of mind, I should. What would you do??

Update: called my hemo after not much sleep due to worrying. He was concerned and I'm currently waiting for a cbc. Will update later with results. So glad it's my dr on call this weekend. I hope this is nothing!

Please keep us posted! It is always scary to see blood.

Well that was strange! My platelet count is 122,000! I'm ecstatic about that! Not sure what that blood was about. It could be more of a dental issue. Recent pregnancy and breastfeeding could be playing a role in my gum sensitivity. I was holding off on the dentist visit due to low counts, but my hemo said if my counts are in this range, I should go ahead and go. So I plan to go soon. I just hope my counts stay up!!

Taz,
Always better to know and it be good news then have the anxiety! So relieved that everything is ok.

Thank you Emily! I'm still concerned about what that was, though. I hope it's a separate dental issue and not something related to low platelets, like some rare disease. But I would think if that was the case, my hemo would have had some red flags and would want to see me. So I'm taking it as good news that he wants me to go to the dentist instead

It's too bad that we cannot get to the calm state as quickly as we can the panic! A new red dot sends me over the edge, but i am working on that. Lots of deep breathing these days trying to stay more calm. Let us know what the dentist says.

I will! Hoping the best for you as well!

Is the APA test the name of the test for the antibodies for APS? I'm assuming it is, but I talked to a new nurse this morning who didn't know. That's always fun That test was normal, thankfully!!! That was one I was pretty nervous about...

Yes, they tend to call it APA in pregnancy type clinics but not so much here for some reason. It should consist of at least two different tests, anticardiolipin and lupus anticoagulant.

Good news about being negative. I was pleased with that result negative too.

There is a third. β2-Glycoprotein.

For good measure, my Rheumatologist also ran a VDRL. That one came back critically high.

Patients with the antiphospholipid syndrome can have a variety of antibodies to molecules called phospholipids in their blood. These antibodies include VDRL/RPR (a syphilis test that can be falsely positive in these patients), lupus anticoagulant, prolonged PTT, beta 2 glycoprotein I antibodies, and anticardiolipin antibody. As mentioned above, the anticardiolipin antibody has also been found in patients with the immune disease systemic lupus erythematosus, which is characterized by the production of a variety of abnormal antibodies.

www.medicinenet.com/antiphospholipid_syndrome/page2.htm

A negative (nonreactive) VDRL is compatible with a person not having syphilis, but in the early stages of the disease, the VDRL often gives false negative results. Conversely, a false positive VDRL can be encountered in infectious mononucleosis, lupus, antiphospholipid antibody syndrome, hepatitis A, leprosy, malaria and, occasionally, pregnancy.

www.medicinenet.com/script/main/art.asp?articlekey=9221

I think she said that one, too, Sandi. She didn't know much and I didn't know what to ask for. If they were screening those 3 for the APS antibodies, would it all have came from the same tube? I'm assuming all of those results are back and fine, but I'll ask again next time I talk to them. Thank you for your help!

More than likely, it would all come from the same tube.

There's a good description here of the three tests and why they are done. The third one that Sandi mentions isn't always done but maybe should be.

www.hughes-syndrome.org/about-hughes-syndrome/blood-tests.php

Thank you for that, Ann! I do remember now that my hemo said something about the LA test and how it wasn't really testing what it's name says. So I'm pretty sure that was part of the test I had. Ah! There's so much to learn!

Right - LA = Lupus Anticoagulant. It isn't a test for Lupus. It's a test for the clotting disorder APS. Confusing it is!

I just talked to my hemo's office again. All of my tests have come back normal. However, when I am done breastfeeding, they want to re-test the APS and VW. So of course, that has me concerned again. I know the VW can be affected by hormones, but can the APS as well? Or by stress? Or is it common to re-test this often? I was breathing a sigh of relief, but now I am confused by it all.

Yes, the APS needs testing every now and then as it can sometimes be negative and sometimes positive. I don't know so much about VW but to test anything more than once is a good idea. Sounds like you have a good doctor. But don't worry about it. Just think that you are negative just now and that's all that matters.

Taz, my little worry-wart, please try to stop stressing. It is common to test the APS antibodies twice, usually it's 6 weeks apart but they are doing it differently which is okay. It's good that they are being thorough. It doesn't mean that they suspect something is wrong. They are trying to rule it out so you won't have to worry about it. Many things can cause antibodies to become elevated or decreased (such as hormones), so checking twice is good.

When you have health issues, it is a good idea to try to go with the thought that nothing is wrong until someone tells you there is something wrong. It took me a while to figure that out and I spent many sleepless nights for no reason. All that does is waste time that could be better spent. On the occasions that I did find out that something was wrong, I dealt with it and you would too, but until that time, don't give it a thought. Mentally picture yourself putting that worry on the back burner and visualize which important things go on the front burners (like that baby). As of today, you are doing fine so go with that!

Ha ha, Ann and I said the same thing at the same time! :woohoo:

Thank you ladies!! Ha ha, I know I'm a worrier. I really do feel my attitude is much better overall. But every once in awhile, something catches me off guard and then I stress a bit. It's good to know that they are wanting to test these things again to be sure everything is fine. If they really thought there were bigger concerns, I'm sure they'd be doing more.

So I know normal platelet production is around ten days. In ITP, this is different, right? I know counts fluctuate. But I'm still trying to wrap my head around why my counts are so all over the place. One week ago they were 122. Today I know they've gotta be low, like in the 30s. I'm just having all of my normal low symptoms... Dark bruises, tiny blood blisters (or blood dots- they don't actually bleed), more sensitive gums, etc. I'm not scheduled for a count until later in the week and I want to hold out until then. But this is driving me crazy. I'm actually for once not really scared or worried about these symptoms, just so confused and sad.

A normal platelet life span is 7 to 10 days, less with ITP. Fluctuation is all just part of the process, as frustrating as it may be.

Try not to assume what your counts are. Many people have been wrong. I once had a chest of bright purple purpura and swore my counts were low. They were 50k. After that, I stopped guessing in my head. All you can do is try not to think about it all the time. It can invade your life if you let it. Distract yourself and don't let it take control. You are strong and you can do this!

Thank you Sandi. My husband just told me the same thing about not assuming I like to tell myself that 30 is the lowest my counts will go, so even if my counts are low, so what? I know that my counts could go lower, but my hemo said it is quite possible for my counts to never go low enough to treat. I like this theory. Does this happen often I wonder? Can your body really have a cut-off point that it won't fall below?

Yes, there have been quite a few over the years who have never had to treat. Sometimes counts go lower when ill, but usually rebound on their own if left alone.