I am on 2 low-dose aspirin and therapeutic phlebotomies as needed (sometimes every 3 weeks and sometimes ever 3 - 4 months). Symptom burden has drastically improved over the past 6 - 8 months.
Just curious if anyone else has experience with significant platelet drop within a short period. Mine dropped by 400. They were 822 then 3 weeks later they were 418. I had them drop drastically about 6 months ago by 500 but that was over 3 months, not 3 weeks. MPN specialist doesn't seem concerned. Just said, "that happens sometimes".
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Is your PLT count higher when you need more frequent phlbs? That would suggest a cycle of high and low overall MPN activity. While therapy keeps the HCT stable, the PLT count exposes this activity change, if this is the case.
From the PLT plot, your Dr's explanation make sense, the low readings are outliers (single unusual events) rather than trends. The early PLT readings were much less frequent and thus could have missed these outlying results. So the idea below is just for curiosity not medical worries.
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If your overall MPN activity is the source of these outliers, the PLT and HCT would not correlate, as they don't. This is because your HCT counts are being changed by the phlbs while the PLT are free to change uncontrolled.
What you would see is around Fall 2022 and Jan 2024, you would have more frequent phlbs from the spike in MPN activity while summer 2023 your phlbs would have been less frequent. As above this is more just for curiosity than something needing action, your Dr is the judge.
It wasn't until approximately fall 2022 that they were able to actual do the phlebotomies consistently. Prior to that it was too thick and would clot easily. Finding a vein wasn't a picnic either. Interesting that you mention Jan 2024 because I actually went from beginning of November 2023 - middle of March 2024 without the need for a phlebotomy.
Such an interesting disease this is. Thanks for taking a look and weighing in. Much appreciated.
I relate to troublesome veins. I've never had a phlb but like all here plenty of pokes. My veins are real easy to see and real hard to nail, many painful black/blue areas to show for it.
I think there is more unknown about this condition then what is known.
On several occasions, where I had 2 separate blood tests , at the same hospital/ lab, taken within 1 hour of each other. Each time showed a significant difference of approx -/+300. Yep, sometimes higher and sometimes lower. Haematologist had absolutely no clue why. They didn’t mention it to me, I spotted it when I got my own copy of my results then I queried them. Even asked the MPN specialist who had no idea either.
(So I do recommend everyone gets copies of all their results for themselves)
But then it also made me think it’s potentially dangerous to make a decision based solely on one test, because who knows what the real number is? It’s a mystery.
Amethist I have had 1 blood draw that was used for blood sample for 2 different dr.s who ordered the same, identical test, and had the numbers be completely different. The dr.s nor the lab could explain. I think that is why dr.s like to watch trends instead of just 1 result. Even though it's science, nothing seems to be exact.
My platelets usually sit around 480 - 600on aspirin only. 3 monthly checks over the last 3 years.
Last months check they dropped to 402
Plus my hematocrit regulated to normal.
No explanation offered.
I did some research myself. The surprising link I found was that I had a virus 2 weeks prior bloods & seemingly viruses can have quite a dramatic effect on reducing platelets.
Batman66 very interesting. For 6 weeks I had been battling terrible nerve pain due to an injury and an infection. My platelets increased as expected but then this sudden and steep decrease. I suspect when I get tested again in 2 weeks they platelets will be back up to 600 - 800.
it’s not unusual for platelets to fluctuate by 200 , yours is a bit more. It may be something unrelated to MPN. Apparently our counts are more sensitive to outside factors than non MPN people, eg I noticed my whites had jumped a fair bit a few years ago and expert Haem explained that I may have a mild infection that I wasn’t even aware of and because of MPN it can exaggerate the white jump, seems he was right as they settled a month or so after. I speculate these jumps maybe bigger if not on cyto meds. Your Haem is most likely correct but if it continues you could get a second opinion.
ainslie I agree with your thoughts. I am pretty sure I have little infections going on pretty regular. I'm going to see what my next set of labs looks like. I would be thrilled if the platelets and HCT stayed low
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