Data fishing

I'm curious... Probably been done and I missed it. Question is... How did you find out about your ITP.

Curiosity is my dad recently had a CBC for fun (or experiment). Was at 135... They checked records and a few years ago he was also 135. I'm a bit lower, but what I'm wondering is how long could I have had this without knowing. First CBC of my life that I remember was at diagnosis. Just curious as to anyone else's experience. Thanks!

In 2004 I had an operation. While in hospital, I was given 3 needles in my belly. I was discharged and 6 weeks later when I was getting ready to go back to work, I found 3 bruises in about the same spots as where I had gotten the shots. I went to my dr. and he sent me for blood work. He called me later that afternoon and said I had to be re-tested, my platelets were low. I had no idea what a platelet even was. We went back to the office so dr. could explain what was going on. My counts at that time were 47. I can't remember what they were the next day, but I think they were around the same. Dr. sent me to a hematologist and I was with him until 2011.

Back in /85 I took a trip out West to visit a friend and on the way I noticed I had little red dots on my leg. My friend set me up with an appointment with her doctor, but he couldn't explain what they were. I'm wondering if my platelets were low back then.

I was diagnosed in 1998 after the worst cold I'd ever had. I'd also been under a lot of stress at work so I was feeling horrible for weeks. I went to my GP and he did blood work. My counts came back at 50k. I was referred to a Hematologist and a few weeks later, counts went down to 8k and I began treating. I already knew what ITP was because my sister had had it in 1982.

It's possible to have ITP and not know it. I had a remission a year after diagnosis that lasted 3 years, or I thought it did. I got counts occasionally for the first year and a half then stopped. A year and a half after that my GP suggested I get one done. Counts were 35k. I have no idea how long they were down but it didn't really matter. I wouldn't have treated with no symptoms anyway. I liked the ignorance is bliss way of thinking and no harm was done. I just monitored at that point for weeks until counts dropped lower, then went back to treating at 10k or 15k. I treated then on and off for a few years and counts ranged from 3k to 300k.

ITP is defined now as counts under 100k. Some people have a 'normal' of under 150k and can live the rest of their lives without dropping lower or having any problems. That's not really considered to be ITP.

I was given a sulfa-based antibiotic for a swollen lymph node. Within three days, petechia formed all over my legs, followed by bruising on my thighs and lower torso a few days later. A few days later, my PCP had me do a CBC, which revealed the platelet count of 2. Within hours I was hospitalized and assigned a hematologist. And so on...

My primary care physician did a CBC for some reason unrelated to ITP...the count was 92k (if I recall correctly). I was referred to a hematologist. Saw the hematologist, learned I had ITP, I was supposed to go back in a month for another count. I did not do so, I ignored it all. Heck, I have always bruised easily and everyone in my family has something auto-immune related. My twin sister (yes, she is named 'Jill') even has a completely different platelet disorder.

Anyway, after YEAR of ignoring ITP, my wife insisted I go to my PCP because my back was covered in bruises. Blood was drawn and I went home. Called my hematologist at The James and made an appointment for the next day. I did not go, because my PCP called me around 10:30pm that night and told me to go to the ER...then my wife insisted I go to the ER. I would never do that again, but was not as well informed back then. In the ER the count had dropped to around 4k. In the morning, they wheeled me next door to my new room at The James, where I spent a few days taking medicine I could have taken in the comfort of my own home. That was over 12 years ago.

So now, at age 61.5 , I've learned over the past 12 years that my head doesn't explode with sub-5k counts, my foam-rubber helmet could be retired, I can do whatever I feel up to doing, health insurance is even more of a racket today than it was before 'affordable health care', and I can live just fine with 9k-16k counts using $10-a-month generic Cellcept. Sure I loved Promacta, but not at $500 a month co-pays.
Oh yes, and I learned that Dexamethasone can provide hours of low-cost entertainment with hallucinations.
It is also a real hoot to be on a 4-day Dex pulse while playing music in biker bars.
As the Blues Magoos so aptly put it back in 1965, "Life is just a cher-o-bowlies".

BTW: I am an engineer, we tend to think that we can analyze and solve every problem......nope.


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My normal count had always been in the 230-250 range.
(I only know this now by looking back at old lab reports, not because I was interested or cared at the time.)

At a yearly thyroid checkup in 2006, count had fallen to 156. It went unnoticed.

At 2007's checkup, count was 79. I didn't notice. More importantly, neither did my MD.

In 2008 - 51k. MD did notice then. At the office visit on the day of that blood draw, I had reported to him the ease and frequency of severe bruising without good cause. He actually shrugged it off without comment. After the result came in, he ordered a second CBC to recheck it.
The lab report for the recheck reads, "Unable to perform an accurate count - platelets appear decreased on slide".
My MD wrote a note to me with his interpretation of the recheck report: "Your blood count is entirely within normal limits."
At the same time I was reading the note, there were two large, deep red and purple bruises on the underside of my upper arm.

I immediately took out my insurance provider list and found a hematologist who would see me without a referral from a primary. When I saw him the first time just days later, count was 26.

Because the count decline was so gradual and so long ago, there can't be any hope of ever determining a cause.

I've told this story to at least three other doctors since. They all asked, with incredulity in their eyes, if I still see that primary. :dry:

In January of 2008 I saw my primary care physician for another issue and mentioned the unexplained bruises on the back of my hands and a very heavy menstral cycle - he tested for other issue's - but when the cbc came back my platelets were at 34k - and so began my rollercoaster ride.

I have always bruised easy, never really bothered me. However my menstral cycle had gotten heavier over the course of a couple months I thought something is wrong and after being proded by my husband (he actually made the appointment and made me go) I finally went. So here I am

10 years ago went to Dr. because of discomfort in right side. She thought it might be gall bladder related, ordered scan & blood work. Scan OK, platelets 27.
Whole new chapter of my life began . . . (Still have occasional unidentified pain in right side.)
mj

I've always bruised easily too so not sure why I was concerned with the 3 on my belly. Maybe just because they seemed to be in the same spots as where I got the shots.

When I worked at Wally World back in 2000/01, some of the girls I worked with would ask me if I was ok. I'd say I was fine and they would tell me I looked very pale. Could that have been an indication that my blood was low or something?

My daughter had a CBC done in June 2013 for some weight gain and weird sleeping patterns with her routine P/E. Thinking more thyroid issues but her platelets came back at 50k. 2 months later they were 40k and bounced in this range for about a year. Since then they have basically been in the 7-8k range. She was 16 when the original bloodwork was done, prior to that her last blood work was when she was 2 yo and they were normal at that time. She was a very healthy kid. She did have some unusual bruising a couple of times for about 2 years prior to diagnosis so my guess is that they were low for a while.

I had a terrible flu or flu like virus with fever, cough, severe fatigue. After 2 weeks of being sick I went to my PCP because I had about 20 bruises on my legs and still a bad cough. He did a CBC and my platelets were at 40k. He told me I most likely had low platelets because of the virus and that I should get them rechecked in 2 or 3 months. But a week later my 20 bruises turned to 40 bruises all over my body so I called the hematologist who I had seen when I had hemolytic anemia several years before. She diagnosed me with ITP and put me on prednisone.

1985 After arising from lawn chair noticed wonderful bruise design from webbing of said chair. No recollection of bruises prior. Bruised like a peach! What a dissappointment now I now how mom must have felt! LOL But life is good you just have to appreciate the highs and respect the lows.

Thank you all for your stories. I'd skipped doctors since I quit wresting about 8 years ago... Even then there was no cbc's. My first was after a good "cold" event.. Recently (8 months ago) had issues with high blood pressure and on med for 2 weeks prior to issues. Was sick about 3 days when in the middle of the night I woke up with oral hematomas. Ignored it for a bit, but about 3am I looked in a mirror and knew it wasn't right. Thought the cold meds and BP meds had a reaction.... Now ITP. Hospitalized 3 times now for low numbers and signs.

I still refuse to give up on cause. Not my thing. My baby pit bull and I have something in common. Hope to teach my son that too

In 1963, diagnosed with itp. Resolved with prednisone. Codeine was suspected cause. Forgot about it. 1974 delivered overdue twins with severe bleeding. Again had codeine in cough meds prior. Spleen removed after prednisone didn't work and I was fine for 39 years. Always avoided codeine but essentially forgot about it. 4/2013 itp reocurred during chemo (count of Hemo/oncologist believes it was triggered by the neulasta shot I received after each chemo session. Had platelet transfusion, prednisone, ivig (3), rituxin (4). Nothing but time worked. Last CBC I was 61 so on my way.

Kyndig wrote: I still refuse to give up on cause. Not my thing.

I said the same thing for the first two years. I just kept reading and learning (still do). This is about what it boils down to.


www.pdsa.org/about-itp/causes.html

Hi everyone, I've new here, newly diagnosed and still in a bit of shock. On December 5th I noticed two really deep bruises that I couldn't explain on my forearm. Then the following day I had a very large, lumpy bruise on the underside of my opposite arm. Again unexplainable. The following morning I awoke with small purle blood blisters on my tongue, cheeks and palate. That had me a little worried, but I went in to work anyway, feeling fatigued. By the end of the day I had tiny red dots all over my body and several new bruises forming before my eyes. I went to our local ER and after hours of waiting was told I had a platelet count of 2 and was being admitted. The diagnosis of ITP was settled on after other causes had been eliminated. I was in for two days for observation and various scans and tests, probably because I also presented with a severe headache and they wanted to make sure there was no bleeding in the brain. I was started on 70mg of prednisone, vitamin D and Calcium. The prednisone serioulsly makes me feel like a band of wild monkey's are having a party in my head! My counts are up from 2 to 11 - I guess that's a start. I'm trying to read up as much as I can on this, but I must admit I'm feeling quite overwhelmed. Glad to have found this place.

My husband story:
It is almost one year he started bruising. We were in the middle of moving to our new flat and we connected this with furniture moving around etc…
Than bruising stops for a month or so, and then started again…Also, he noticed small red dots on his hands, we thought it was some kind of rash..
For the first time we thought that something is wrong few months after, when he got extremely large bruise on his leg after playing with our kids.
He went on cbc and count was 5 (or 7. in smear it was 24).
That was May this year.
Nevertheless, doctors get panicked, emergency hospitalisation, high dose of Medrol..
In nutshell, he was more than half year experienced mild symptoms (hematomas and petechial), and everything else was more than normal.
Just recently he received some comments from his co-workers that back than he was looking kind of pail..
Interesting part – today we meet with our new hemo (she is great ) and she told us that she’s taking only smear count as relevant one, and based on his status and condition in May, she would apply watchful waiting ..