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Platelet clumping? 3 months 1 week ago #71649

  • RG
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I'm spankin' brand new to this world of ITP. Quite rattled too. Six weeks ago my CBC showed platelets at 108, so dr says let's do it again to make sure it's a real number. Two days later and it's 102, so he says it's a mild condition. Anyway, dr says let's wait a month and do it again. So last week another CBC, this time they couldn't determine platelet count due to "clumping." Dr says that's probably due to the sample anti-coagulant, so let do another without the anti-coagulant. Today I get those results - more clumping. So dr says let's do it again at another lab... which I just now did. Anyone in this excellent group have any experience with this? Not sure why, but it's really *really* rattling me. All I can find on the web is stories about Pseudothrombocytopenia or platelet clumping - basically a sample processing issue (i.e., I don't see medical literature on clumping with thrombocytopenia). I'm obviously not pleased about having low (and maybe falling) platelets, but three CBC's in seven days all coming back with unreadable numbers is making me anxious as all get out. Thanks in advance for being patient and kind with a newbie.

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Platelet clumping? 3 months 1 week ago #71650

  • MelA
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I was diagnosed with ITP in 1989 - I have had a test come back a few times saying couldn't be read due to clumping [something like that anyway] - this happened when my blood was taken at a lab and then sent out to be read. Was your blood sent out or the sample run right then? Also is the blood being drawn into the proper tube - think it is the purple/lavender top vial, IF memory serves me right.

Sounds like your blood specimen is being sent out. When do you get your newest test results?

Nothing to be rattled about! And platelets go up and down, they don't stay at a steady number all the time. My hematologist would say 108k and 102k are the same. And I'm not sure you would be considered having ITP with those counts.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Platelet clumping? 3 months 1 week ago #71651

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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RG
You may find the links below of use
labmedicineblog.com/2019/10/29/hematology-case-study-the-story-of-the-platelet-clump-edta-induced-thrombocytopenia/
www.ncbi.nlm.nih.gov/pmc/articles/PMC4682859/

I wouldn't worry too much; if your count is normally above 100 you do not have ITP,
See McCrae's explanation below taken from www.ncbi.nlm.nih.gov/pmc/articles/PMC3410635/

"THE NAME AND THE CUTOFF HAVE CHANGED
The term ITP formerly was used to refer to “idiopathic” or “immune” thrombocytopenic purpura. However, although not all aspects of the pathogenesis of ITP are understood, the disease can no longer be considered idiopathic. In addition, many patients do not have purpura at the time of diagnosis. Though the abbreviation “ITP” remains the same, it now refers to immune thrombocytopenia, which can be either primary or secondary.1

ITP is defined as a platelet count of less than 100 × 109/L (100,000/μL) with no evidence of leukopenia or anemia. This cutoff point is new: in the past, ITP was defined as a platelet count of less than 150 × 109/L, which is the threshold for a normal platelet count in most laboratories.

The platelet threshold of 100 × 109/L was based on a study by Stasi et al,2 who followed 217 otherwise healthy people who had an incidental finding of mild thrombocytopenia (platelet count 100–150 × 109/L). Within 6 months, the platelet count rose to more than 150 × 109/L in 23, while three had worsening thrombocytopenia or were diagnosed with other conditions. During longterm follow-up (median 64 months), 109 of the remaining 191 individuals remained stable, 13 developed counts greater than 150 × 109/L, 12 developed ITP, 13 developed an autoimmune disorder, 18 developed other disorders, and 26 were lost to follow-up. The 10-year probability of developing ITP, defined as a platelet count persistently below 100 × 109/L, was only 6.9%, indicating that the chances are small that a person with an isolated finding of mild, stable thrombocytopenia will develop ITP."

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Platelet clumping? 3 months 6 days ago #71652

  • RG
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Thanks so much for the response. And yes, the last two "clumped" were indeed at a lab that had to be sent out. And last night's was at "the lab that does the analysis." Given that it was late friday, I don't know when I'll see the results.
I agree on the 100 range not being ITP... but my dr seems to be concerned for other reasons that it may decrease.
Thanks tons - sure appreciate hearing from others.
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Platelet clumping? 3 months 6 days ago #71653

  • RG
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This is great info - I really appreciate it. Thanks a ton - seriously.
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Platelet clumping? 3 months 6 days ago #71654

  • MelA
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Let us know what the count was when you get the results!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Platelet clumping? 3 months 5 days ago #71656

  • RG
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Will do. In the meantime, yesterday I ended up at urgent care again - this time with blood in my urine. Dr is thinking the platelets and hematuria may be connected.
It's a strange place in my brain these days; test after test shows me being the picture of health - all the urine and blood tests show everything *except platelets* well withing normal range. thanks MeIA -

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Platelet clumping? 3 months 5 days ago #71657

  • MelA
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What is the meaning of: *except platelets* ? What was your count in those tests?
Is the blood in urine visible? If it is visible I wouldn't just say it's due to *except platelets* especially if count is in the 100s. If blood is seen with the naked eye & count good then I'd want to see a urologist.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Platelet clumping? 3 months 2 days ago #71658

  • RG
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Ok, ample activity with several dr's last couple days. First, the "clumping" was indeed as y'all suggested: the place taking my blood let it sit and sent it elsewhere. When I went directly to the "real lab" that does the analysis, they showed my platelets up to 148. So I'm super pleased about that. Second, two dr's feel that the blood in the urine was unrelated to the platelets (you're right again), and came about as a result of me stacking 1 ton of hay (100lb bales, 90 deg, age 66, mea culpa). And you're totally right about the urologist - I have a really good one due to prostate history, so that's being fwd'd to him. After 36 hrs, no blood present in urine analysis. No infections, clean culture.
Still nobody will venture a guess about the 100-ish platelets, nor how it recovered over a five week period. My wife (not a dr) suspects the pfizer vaccine may have jostled my immune system, and she bases that our daughter's experience with having covid (she had tremendous loss of platelets and considerable leg bruising).

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Platelet clumping? 3 months 2 days ago #71659

  • MelA
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Wow - great count RG!! Very happy that you haven't really joined our exclusive (ha ha) club ;)
I wouldn't make a bet that your 100-ish count was due to the vaccine - however you will never know. I'd say it was just a normal fluctuation and if you hadn't had a blood test that day you wouldn't have known it was 100-ish (and like your wife, I'm not a dr either :) ). So glad you have a good urologist and he will get the blood-in-the-urine results. Hope your daughter is doing well after her bout with covid!

Now you keep us posted on how you and those platelets are doing - ok?! My best to you!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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Platelet clumping? 3 months 1 day ago #71661

  • RG
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Thanks a million MelA - really appreciate it.
Yes, the daughter had a rough time that lasted quite a while, but she's doing very well.
I'll be keeping y'all in my prayers -
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