So many questions and anxieties

Hello,

I am new to all of this. But here is what I've been through these past few months: After having my daughter at the end of October 2014, I got hand, foot, and mouth the following week after my 2 year old son came down with it. About 6 weeks later, I woke up with bruises all over and was still having postpartum bleeding. Initial blood work came back with a platelet count of 35,000. This started my journey. I've had so many tests done to rule out every possible other cause. A few weeks ago, my hematologist confirmed he believes I truly have ITP. He does think it may have been caused by the hand, foot, and mouth. He feels if that is the case, my ITP could mimic childhood ITP. I feel very comfortable with my hematologist, as he specializes in ITP and is very active with PDSA. (I also had the Tdap shot 3 days before waking up with all of the bruises...not sure if that's related)

My counts stayed at around 35000 for awhile. Then they started to go up in the 40s and 50s. A couple colds brought them back down slightly. I have gotten as low as 30,000. Then last week, I had a reading of 188,000! But then had more bruising, so went Monday and it was 74,000. Then woke up with a little petechiae today, so went again. They are 46000. I've never had the jump like this.

Since this all started, I've been a mess. I'm already having enough stress and little sleep, due to a new baby and a toddler. Plus, I am nursing my baby, so thinking about possible treatments also include my daughter's well-being. I have a history of anxiety, and this has definitely brought that back at a high level. I also have a history of migraines, which have been coming back, likely due to the stress of everything.

I guess I have lots of questions...Has anyone had the childhood-mimicking ITP? Do counts go crazy like this often? I was so used to them just staying the same. I'm also curious about the anti-D treatments. Is it the same thing they give pregnant women when the blood types are different? Honestly, all of the treatment options scare me, as the side effects seem extreme. I really do not want to take prednisone, as I'd rather not take something like that while nursing my baby. Anti-D seems a better option, but the side effects of that also are alarming. I luckily have not had to have treatments yet, and I hope I never do. But I need to be prepared, just in case. I also wonder about diet changes? I've read so much about what not to eat, that I feel like anything I put in my mouth could potentially lower my platelets!! Any thoughts or advice are greatly welcome and appreciated!!

Hello and welcome.

Your counts have stayed in a safe range so far, so obviously no treatment has been needed. It's possible that you may never need treatment, so while it's good to think about the options, it's not worth it to worry about it so much. If you do need to treat, you'll do it and you will handle it just fine.

Yes, Win-Rho is the same thing given to pregnant women when the RH factor differs from the baby. The side effects sound scary, but most people tolerate the drug just fine. I used to get it during my lunch hour and fly back to work. They do it differently now and monitor patients longer, so that makes it more of a safe option.

Yes, ITP can be acute for adults and even if it's not, it can be managed. There are also remissions and many people achieve that. When people have had ITP for a while, they end up thinking of it as more of a pain in the butt than anything. The fear goes away. The more you read and learn, the more confident you will feel. We've all been where you are now and I promise you, we all have normal lives.

Thank you so much for your advice. It's just hard not to freak out right now, especially when I have little ones to think about. But it is nice to know there is a place to go to talk with people. When I try to explain ITP to my friends, I get looked at like I'm speaking a foreign language I guess I felt the same way at first, before I started researching. I still obviously have lots of unanswered questions. I just wish I could get past the constant fear of my counts dropping at any time.

Hi Taz,

You are lucky to have found a hematologist that you trust! Others might already have started treatment, and this could resolve itself without any help.

I have never heard of childhood-mimicking ITP, but that would be a good thing, as childhood ITP tends to be temporary (acute) whereas adult ITP tends to be chronic. Only time will tell.

Yes, counts do jump around, but also there can be inaccurate readings, especially if platelets are clumping in the vial. The machine will read a clump of small platelets as one larger blood cell. A good hematologist would already be aware of this, though.

You mentioned migraine headaches. My wife has both ITP and migraines and her migraines tend to become stronger and more frequent as her platelet counts get lower.

Some medications you might be taking can cause symptoms of ITP. For example, ibuprofen can cause DITP (drug-induced thrombocytopenia) and can also interfere with platelet function, causing symptoms at counts that usually would be asymptomatic. Aspirin is a well-known blood thinner that interferes with platelets forming clots. Also, tricyclic antidepressants - sometimes given for anxiety - can have a similar effect (I think due to bone marrow suppression, maybe?), along with a host of other medications, over the counter remedies and natural treatments.

If you do need to be treated with steroids, be sure to let your doctor know that you have anxiety issues, as steroids tend to magnify those issues. He may want to give you something to help you with that.

On a brighter note, steroids do help greatly with the migraines. Even before she had ITP, my wife's neurologist would prescribe a short course of prednisone if her migraines became treatment resistant... and it has always worked for her.

Yes, I really like my hematologist. I was sent to another one at first. And she was okay, but she dealt more with cancer patients. She did want to treat me immediately. And she also said I had ITP without doing other tests. Then I did research and found an ITP specialist within 30 minutes from my house. So that was a no-brainer!

That is interesting about the migraines. I will have to pay more attention to that. And my hematologist did say that they felt my high reading last week was inaccurate. Of course, I was hoping it wasn't!

I only take a prenatal vitamin, vitamin c supplement, and a probiotic. I only take tylenol sparingly when I have a headache. Otherwise, I do not take anything. I stopped fish oil and ibuprofen as soon as I found out about the low platelets. I also stopped having an occasional glass of wine, which I sometimes miss. But I am scared to have one! My diet is pretty healthy, for the most part. I have been adding more leafy greens and cutting back more on the dairy, gluten, and sugar. But I still consume them. I so worry the most about the diet, though. You just wonder if there is something that you are doing or eating or taking that is keeping the counts from going up...

There isn't anything in the diet that has been shown to cause ITP or exacerbate it. Even alcohol is fine. Alcoholics have problems with platelets because of liver problems but we aren't talking about that. So enjoy your odd glass of wine. I can assure you it won't make any difference.

Diagnosing ITP usually doesn't require a lot of tests according to protocol. If counts are very low and do not respond to treatment, tests should be performed at that point. Most doctors can tell just by looking at the blood smear if you have ITP or not. Some do other tests just for peace of mind.

With ITP, counts can drop quickly and it does happen. This is where you have to be familiar with your body. A few bruises or petechiae are usually nothing to worry about, but if you have a bloody nose that will not stop or blood blisters in the mouth, that is when you should seek help. Very few people die from ITP especially if they are aware of it and are being monitored. Low counts do not equal death.

Thank you everyone. I have had a blood blister or two here and there. They have been tiny and are gone within a day or so. And the doctor wasn't too concerned. I have not had any bloody noses, luckily.

You have made me a little more relaxed about all of this. I know I will still think about treatments and check my body for signs, but hopefully now with a little more calmness.

Rob16, I think it's great that you are so involved with your wife's ITP. My husband has been beyond wonderful in all of this and had done a lot of research on his own as well. It's very reassuring to have your spouse with you every step of the way.

Well, I'm a little anxious again. Since last posting, my counts were in the 40s and last Monday they were 60k. I've been feeling good, just getting a bruise here and there. But that seems normal for me, even with somewhat higher counts. Then tonight, right after dinner, I felt a blister in my mouth. Sure enough, there is a blood blister. I've gotten small ones here and there. Not more than two at a time and when my counts were in the 30s. I'm worried now my counts are low again (low for me). Although, I don't have many new bruises like I usually do when they drop. I'm getting my cbc tomorrow anyway, but I guess I'm wordering how serious one blood blister usually is? And I seem to have symptoms at higher numbers than most other people. How concerned should I be with all of this?

It's a good arrangement. I would worry anyway if I were not on top of the latest information, and she doesn't worry, knowing that I do. I am her designated worrier!

I know I have to wait and see what my counts are. I just don't know what to think of my symptoms. They seem a bit much for my counts. And is one blister something I should be that worried about?

And how do you stay on top of the latest info? I'm very interested in keeping informed. But I feel like I've read everything that Google has on ITP. Ha ha

This thread is filled with all of the latest, credible articles. I add to it constantly.

pdsa.org/forum-sp-534/6-general-itp-discussion/16141-new-articles-posted-here-update-4-1-15.html

As for your symptoms, get the count done tomorrow and try not to worry until then. If they are low and you need to treat, then that's what you will do!

Taz wrote: I know I have to wait and see what my counts are. I just don't know what to think of my symptoms. They seem a bit much for my counts. And is one blister something I should be that worried about?

This is a good question that I hope others will chime in on. My impression is that most others generally don't get blood blisters until their counts are lower than yours. So I also wonder if this is abnormal, and if so, what might it imply.

I often wonder if one's resistance to bleeding at lower vs. higher platelet counts might be an indicator of the subtype of ITP a person might have, but I cannot find any studies on that.

I would certainly ask your hematologist about this.

Thank you!! It appears that what I thought was a blood blister is now more white... Like maybe a canker sore. It's definitely not black or bloody at all. I do still feel like I bruise a lot at higher counts than most. My legs right now are covered, and a few on my arm... And I have been 40k or above for a month. And I have had one or two small blood blisters in the 30s. I know my normal is going to be different than the next person's, but it's still weird to me. I plan on asking my dr when I go back in a few weeks.

My counts today are 93,000. Apparently. My blood is taken at a different lab and the results are sent to my dr. So I don't know how reliable those results always are. Or what exactly my doctor sees... Just the numbers that the machine read? I know you had said something about the platelets clumping together. I am going to ask my dr about this as well.

I have one new bruise today, which makes about 3-4 new ones this week. I think I do still get bruises like this above 50k. I'm just not sure if I should get them at 93,000. I have always bruised easily, but still...

Just some info about blood blisters. They start off full of blood so look dark red or even black, and then a little while later as the blood drains out, they turn white.

If the platelets clumped, the count would read lower than it really should, so that won't be it.

Hmm..okay, thanks! Now I'm even more confused What may or may not be a blood blister that I have right now, is definitely different from the ones I've had before. And this one came right after I ate and had turned white within an hour or two after it appeared. My husband thinks it's not a blood blister, but who knows.

What could cause false high readings? Not that I think my counts are very low... I've definitely had worse symptoms than what I have now. I just wonder if the 93,000 is accurate. Based on my symptoms and previous counts, I would've guessed them to be more like 50-60. Is there really much difference in the 50-100 range?

My blood blisters started once I was below 10 and after they had bled out they would turn white. I had them on my lips, tongue and the inside of my cheeks. Once I rose above 10 they all disappeared.

There are many factors that determine how well the blood clots. Platelets are not the only thing. You might want to ask your Hemo to do a PTT; that can tell you whether or not he'd need to look further at clotting problems.

www.webmd.com/a-to-z-guides/partial-thromboplastin-time

I get spontaneous blood blisters only when my count is under 5. At other times I'll get a blood blister when I bite my cheek or lip or damage it with sharp food or something. Crisps and crusty bread does it for me. I know that I notice that more now than I did before ITP although I probably don't get them any more now than I did then.

If yours are spontanteous blood blisters, I don't know why you would get them at such high counts. Are you sure you don't have a rough tooth or are eating something that is damaging your mouth in some way?

Thank you!! Sandi, I have the PTT on my list of questions to ask. He may have already done it, but I want to find out for sure.

And Ann, I think it may very well have been from what I ate last night. I did have hard bread that could have caused it. It's funny how much more aware I am of every new mark now with ITP.

Robert, I have never had a blister bleed out. All I've had, aside from what I have now, are very small black spots. Like one or two. Only two or three times when my numbers were around 30. They were gone within a day or two. I had one when I was at the hematologist and he was not concerned. So I'm guessing if my counts were dangerously low, these blisters would be more troublesome. It's another good question for my dr next time.

Also, Sandi, the only other test that came back somewhat abnormal was my ena panel. It was 1:80. They said it was a low positive, so it was not something I should be concerned about. They followed with the ana panel, which was normal. Any insight on this?

Taz,
I am totally with you on: seeing everything that is on my body; and having symptoms that seem unrelated to counts. I have had a sort of bloody crusty nose since Friday but my count was over 90,000 today. By the same token other symptoms are totally gone leaving me feeling thrilled that my number is good and completely in the dark about what should freak me out (and no, I don't want any more symptoms)!

I have only had one blood blister in my mouth and it was black and when my counts rose it just disappeared on its own. It neither turned white nor bled out.

Glad your counts are good.
Emily

The ANA is an antibody test that measures inflammation. The results can indicate an autoimmune process. A result of 1:80 is pretty low and is usually not cause for concern. Some people with ITP have a low-positive and never have any further problems. It is not uncommon to have a slightly elevated ANA with ITP and this can even occur in healthy individuals.

Here are some links. At this point, it is nothing to worry about, honest.

www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Antinuclear_Antibodies_%28ANA%29/


Conclusions

Our data demonstrated that ANA positivity is often found in adult and children patients with ITP, and indicate that the detection of ANA positivity is not enough to identify those patients with ITP who are at risk of developing SLE or other CTD. There is a statistically significant difference in terms of ANA positivity between childhood acute and chronic ITP patients. We think that ANA positivity may be an indicator in terms of chronicity for childhood ITP. However, large-scale studies should be considered to determine the significance of ANA positivity and their utility in differentiating acute from chronic ITP.

link.springer.com/article/10.1007%2Fs11239-007-0031-y

www.thelupussite.com/ana.html

About ITP symptoms:

Naturally, it is a good idea to be aware of your bodies and know the symptoms. But you also have to learn to stay calm and not panic or assume that counts are always low if a symptom appears. It takes time to get to that point and I think the key is to realize that even if counts are low, you will more than likely survive until you get help (probably the next day, at least).

Once you have symptoms a few times and panic, then find out that counts are fine, you learn that you worried for nothing. You both just found that out today.

Remember that normal people bruise too. You probably did before ITP. Normal people have nose bleeds. Normal people get petechiae. Most people get those things but don't think a thing of it or don't even notice. After the ITP diagnosis, we tend to scour our naked bodies looking for any small thing. You don't have to do that. If your counts are low and you are getting symptoms, they will be obvious. I learned not to react unless the small cluster of petechiae got larger and didn't fade. I once had a chest full of dark purpura with counts of 50k. After that episode, I quit panicking.

I get odd skin things all the time. About twice a year, I get things on my arm that look like cigarette burns. They pop up out of no where. I just look down and there it is. I don't know what it is, but since I have Lupus, I attribute it to that...just some weird skin thing. It goes away in about a week. I get bruises too, but I have thin skin from years of Prednisone so I go with that theory.

You two are monitoring your counts and are under the care of a doctor. You are aware of the situation and can be treated if necessary. You're vigilant and on top of things....you'll be okay.

I feel a lot better after all the helpful comments and with my counts being up. I love having this forum to go to for advice and reassurance. It has really helped me in the past couple of weeks. Since I'm still new to ITP, the symptoms are still scary at times. I'm glad I'm figuring out what my normal is, though, and I have many questions for my hemo for the next visit. Thank you all for your support!

Taz,
My blood blisters would develop overnight and the first thing I would do each morning would be to rinse my mouth out. They would continue to bleed throughout the day and then the white skin would come away after a couple of days only to be replaced by another one somewhere else. I had these for 4 months and whilst unsightly and unpleasant they were not painful. For some reason however I also developed ulcers in my mouth and on my tongue (due to the prednisone?) which were were very uncomfortable and perhaps the worst aspect of my ITP. I was amazed at how the body repaired the deeply ulcerated areas once my count went back above 10.

My counts today are 50K. I know that's still a safe number, but the jumping around that my counts have been doing lately concerns me. How concerned should I be with this? And is there anything else I should be asking my hematologist when I go in two weeks?

Platelet counts fluctuate often due to constant production and destruction. Your counts have basically stayed in the same range...50's, 60's 70's and that's a good thing. It's showing stability.

If you had a downward trend going, that would be more of a concern.