Curious

I was diagnosed with ITP in 2004 after a hysterectomy. But I've been thinking. Back in 2000/1 I worked at Wal Mart. Some of my co-workers would ask me if I was feeling ok as I was very pale. I never thought anything about it, but lately I've been wondering if that could have been the start of my ITP journey. I never mentioned it my doctor so didn't have any blood tests. Also, in 1985 I took a trip out to Alberta and when I arrived at my friend's place, my legs were covered with little red dots. She arranged for me to see her doctor, but he didn't seem to be too concerned. He gave me some cream to put on my legs. I wonder if these incidents could be related.
Thoughts/ideas?

Could be, Cindy. You wouldn't know unless you'd had a CBC. I'm sure there are plenty of undiagnosed people walking around.

On a related note, I have been wondering about how fast ITP comes on folks. Some discover ITP by accident - implying a lowering of counts over a protracted period of time. Others ITP came on quite abruptly and with onerous symptoms. Age influence? Antibody type influence? Perhaps the difference is totally dependent on how bad of a boo-boo ones immune system has made. I dunno.

It seems pretty clear that ITP came on you slowly - just as it did me. Perhaps our immune system made tiny boo-boos a long, long time ago

Back when at Wal Mart, I never went to the doctor because I didn't think anything was wrong. I can't prove anything now. But, I'm pretty sure they did blood tests before my surgery; would have thought they'd have caught the low platelets then. Oh well, not that it makes a difference. I was just curious.

Thanks for the replies, Sandi and Hal!

What was your platelet count, after surgery, that aroused suspicion?

I had my latlet count done on March 2015 and it was normal.

Next was on Sept 2016 which started my ITP episode.

My theory is mine got started very fast with a stress incident.

jayinchicago wrote: I had my latlet count done on March 2015 and it was normal.

Next was on Sept 2016 which started my ITP episode.

My theory is mine got started very fast with a stress incident.

Sounds like my experience too. Normal last August, stress incident and/or clarithromycin trigger in last month.

Hi Hal. It was actually bruises I had after I got home from the hospital that sent me to the doctor. While I was in the hospital, I had 3 needles in my belly. Heparin was one, can't remember the other two. Maybe all 3 were the heparin. Makes sense, now that I think about it. Anyway, shortly after I got home I noticed bruises in about the same spots as where I had had the needles. Went to my doctor about it and he sent me for blood work. Called me later that afternoon and said I needed to be re-tested as my platelets were low. I had no idea what platelets were back then, so I just agreed. He wanted to see me, so my husband and I went back to his office. He told me my platelets were 47 and explained that numbers should be between 150-400K. He said the reason for my low count could be a couple of things: Leukemia, ITP or Lupus. He was hoping for ITP. I can't remember what the re-count was, but that was the start of my journey. I never wondered what caused it, but did ask my doc if it could have been from the shots I got in the hospital. He said he didn't think so and referred me to a hema. I asked him the same question and he said no. I was taken off all my meds to see if that made a difference, but it didn't. I got IVIG every week for the first year of my diagnosis.
Wow, I don't remember ever writing so much!

47 doesn't sound that bad. I assume you've learned about Heparin induced Thrombocytopenia since.
Did your count eventually fall lower, below 30, to then have the splenectomy? Or, were counts always around 50?

Is it possible your doctor confidently announced the low count wasn't from the heparin because your counts were tested before surgery and were a bit low then?

Before this thread my guess was that those that respond to steroids (what I call type 1 ITP) can have a long period of lowering counts. Complete guess, haven't looked at personal accounts evidence to either support or reject the idea.

The first year was the worst. I was lucky to get over 50. Yeah, 47 wasn't bad, especially seeing what some of the newbies are dealing with. And some of the regulars. I had heard about the Heparin induced ITP and that was one reason I asked about it. I decided to do the splenectomy 2 years after diagnosis because I wanted off the prednisone. I knew there was a chance it wouldn't work. It did bring my count up to the 200's; for a month. So for the next 5 years I was back on the pred (low doses) till my doctor got me approved for Rituxan. I've been in remission since. I check out the site every day, just don't post much anymore.
If my counts were low pre-surgery, nobody told me. The year after my splenectomy, I had my gall bladder out after an attack that sent me to the ER. Found out at my appointment with the surgeon that they found stones the year before when they did an ultra sound. It's like, why the hell didn't they tell me? I would have changed the way I ate!

I'd guess that if your platelets were below normal prior to the hysterectomy, they were not below a safe surgery number.

I agree, Sandi. Back then I didn't know there was a problem.

Thanks for sharing your story Cindy! glad you are staying with the forum and contributing. Its good to hear from people who have long term remission and how they got there.
wow yes, you think they might have mentioned the gall stones!? Doctors have a long history of keeping patients out of the loop and out of decision making. Though that situation is changing- patients are more informed, new laws that give patients rights to their medical records, etc.
Reminds me how in 2008 I was getting yearly labs for thyroid. The labs showed seriously low platelets- 12K-14K for two years and the doctor/nurse at a clinic didn't bother to mention it (?!) My first hematologist was an ex-military doctor- a very intense guy, and when he found out, he absolutely hit the roof. He made repeated angry calls to the clinic. They didn't call him back- not surprisingly.
So I never found out what they were thinking by not telling me. In hind sight it all worked out as I got two years of no treatment, no drug exposure- but at a risk. These days I get copies of my labs and medical records but back then, a short time ago, I don't believe they were voluntarily giving out lab results.? Or I wasn't aware of it.

The first year after diagnosis I was getting print outs of my blood work. After I had to switch hospitals, I kinda lost the ability to get copies. I don't get checked too often anymore.

The night I wound up in the ER with the stomach pains, the nurse says" On a scale of 1-10 what is the pain level?" I said 14! I had never experienced that kind of pain before! Nor do I want to go through that again!

I get tested yearly for my thyroid.

I can't attribute my ITP to any sudden event. My count dropped slowly, about 3 years between my usual normal and diagnosis.
I also get yearly CBCs for thyroid checks. It's the only reason I ever needed a doctor.
In 2005, my plt. count was 'my' normal, 270.
2006, it was 150.
2007, 79.
2008, 33.
That was the first year anyone noticed how low it had become, and it was at that time I'd started having severe bruising without any injury. MD ordered a recount; lab sent it back unreadable because of clumping, but with a notable "reduced count" on the slide. Astoundingly, he sent me a note saying my blood test was "completely normal".
So I took myself to a hematologist. The count that day was 26.

Even as a kid I always bruised easily. Never thought anything about it. I think most kids play hard, so it wouldn't be surprising to see bruises.
Shortly after diagnosis, I had a doctor's appointment. We left his office and were walking up the hill to the car and a police car drove by. I hid my arms so the cop couldn't see them. I was covered in bruises and I didn't want them to think I was being abused by my husband.
I never wondered where or how I got my ITP. It didn't bother me.