Fluctuation of Platelet Count: Good day. Since... - CLL Support

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Fluctuation of Platelet Count

Floydpup profile image
22 Replies

Good day.

Since May 2022 through January 2023 I have had 4 Blood Draws. The first showed Platelets stable at 150. Then they dropped considerably (31 pts) to 119 (11/22). They recovered slightly to 122 (12/22) and now presently have recovered all the way back to 150 (28 pts) (1/23). I am fully aware from this community that platelets can be expected to change up and down over time and it is the Trends that are important. My particular question is this. Is my rate of change in platelets (both up and down) within the expected range that has been described on this site or is such a large swing considered "Unstable" and thereby problematic? Also, both WBC and Abs Lymphs have steadily increased over the same timeframe as documented in my profile. Thanks for your viewpoints.

FP

22 Replies
CycleWonder profile image
CycleWonder

The platelet counts you reported of 119 and 122 are essentially the same, as are the two of 150. And yes, it is not abnormal to experience fluctuations. It’s one of the reasons CLL specialist look for “trends” rather than reacting too strongly to one set of results.

Floydpup profile image
Floydpup in reply to CycleWonder

Thanks CW

AussieNeil profile image
AussieNeilAdministrator

Given a picture is worth a thousand words, here are my platelet counts back when they were around the same level as yours. The dotted red line is the lower reference limit of 150. The grey lines below it show the 140 and 120 count levels. Notice how similar the variations are to your results?

The best reproducibility figure I've seen for automatic counting of platelets is +/-10. That means that testing the same blood sample can report counts differing by up to 20. I've also seen reproducibility figures of +/-25 and +/- 40.

You shouldn't have an increased risk of bleeding without injury until your counts drop below 50. At that point you may see spontaneous bruising, mostly on the arms and legs.

If your specialist becomes concerned, they can always request a manual count. At my pathology lab, a manual inspection is automatically triggered when the results are out of range.

By the way, forget about tracking your percentage neutrophils and lymphocytes when you have the absolute counts. You don't need them and they'll lead you to becoming concerned unnecessarily: healthunlocked.com/cllsuppo...

Also, reduce the number of lines between "surface lambda light chain dim+." and "CBC Information" in your profile. I almost missed your blood test results.

Neil

Platelets naturally clump together, which can cause large variations in automatic counting
Floydpup profile image
Floydpup in reply to AussieNeil

As always thank you Neil.

lankisterguy profile image
lankisterguyVolunteer

Hi Floydpup.

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My favorite explainer of all things lab testing- Dr. Susan LeClair does lots of videos for CLL Society, Patient Power and Patient Education Network, so when you look at these links, poke around to find others. Each of these have slightly different focus, but they all describe what happens with blood tests and/or platelets

cllsociety.org/2018/12/plat...

patientpower.info/navigatin...

powerfulpatients.org/2019/0...

youtube.com/watch?v=OoaV_vj...

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Len

Floydpup profile image
Floydpup in reply to lankisterguy

Thank you for the links Len.

scryer99 profile image
scryer99

Just as an anecdote…

My platelet counts varied from 85 to 110 pre-treatment, with roughly 20 blood draws over 18 months.

The same counts have varied between 90 and 140 once treatment drugs were administered (methylprednisolone), then held, then changed (zanubrutinib). That’s over three months with roughly 10 blood draws.

Your variation does not sound off-kilter to me. Might be mildly concerning if the trendline was solidly downwards.

Over the time frame above, ALC went from 4 to about 130 pre treatment on a pretty consistent growth curve, and has jumped around between 120 and 290 once medications were administered.

Floydpup profile image
Floydpup in reply to scryer99

Good to know. Thank you for sharing your experience with this.

flipperj profile image
flipperj

There can be a significant amount of variability in platelet analysis due to clumping etc. Mine have varied 30 points in a 24 hr period and 50 to 100 points over the course of a week while on treatments.

Floydpup profile image
Floydpup in reply to flipperj

Thanks flipperj

stevesmith1964 profile image
stevesmith1964

HiI have monthly bloods, my platlets bounce about a lot ....109 to 141 and vice versa is not unusual.

Floydpup profile image
Floydpup in reply to stevesmith1964

Good to know. Thanks Steve.

CJAHELYER profile image
CJAHELYER

I think you are most fortunate to have such a moderate swing; my count reached the depths of 19 without me having any outward adverse effects. In now hovers around the 130 mark and and my haematology consultant is happy with that.

I am on Ibrutinib for controlling, which it does most effectively, Mantle Cell Lymphoma. Hoping there is some encouragement for you in my experience.

Floydpup profile image
Floydpup in reply to CJAHELYER

Yes thank you for your response.

morepork profile image
morepork

Interesting to see a discussion on platelets, as I had just mentioned mine to my haematologist - actually face to face at hospital OPD- the first time in over a year. While all my other counts yo yo around they stay within a broad if sometimes abnormal range.

But my platelets are slowly and steadily declining since starting Ibrutinib - count currently at 70. Doc says no concern until the count reaches about 20 - which sounded slightly scarily low to me.

Floydpup profile image
Floydpup in reply to morepork

Thank you MP

AussieNeil profile image
AussieNeilAdministrator in reply to morepork

Indeed, the trigger for requiring platelet transfusions when you have CLL is your platelet count falling below 20 if you have an infection, otherwise it's 10. That does seem scarily low when the lower reference limit for platelets is 150. Your haematologist might like starting transfusions at a higher count when you are on ibrutinib due to the effect of ibrutinib on clotting.

Neil

Floydpup profile image
Floydpup in reply to AussieNeil

Thanks Neil.

wizzard166 profile image
wizzard166

Hey Floyd

I'm five years on Watch and Wait as of this upcoming February 18. I am seen every six months by two different Specialists for CLL, one her locally in South Florida and one I consider my lead Specialist in Boston. So in essence I get bloodwork every six months. Here are my last six readings from 6th back to recently: 193, 179, 146, 142, 158, 155. If we go all the way back to when diagnosed, my readings ranged between 150 and 170 going up and down.

So my Platelet readings have gone up and down over five years with the lows being in the high 140s and the highs being in the 170 to 180 area. All I know is my Boston Specialist, who is one of the most well known in the field, has been happy with the platelet stability and red cell stability over the years and currently. My WBC keeps going up over time much more than either of the Platelets or RBC readings, and she is fine with that so far because of the stability with the Platelets and RBC readings. My last WBC reading was 98,000, with RBC at 4.76 and Platelets at 183 on January 16th. That reading I gave you that was the sixth one in the list above was from early December. So you can see Platelets go up and down, and my experience is RBC goes down but very slowly (and sometimes it even goes up a little).

Carl

Floydpup profile image
Floydpup in reply to wizzard166

Thanks Carl. I too am in Boston.

bennevisplace profile image
bennevisplace

Others may read the tea leaves differently, but to me the most significant feature of the blood results on your profile is that the ALC has been pretty sluggish.

OK, apart from the jump between 12/21 and 5/22. I had something similar 2 years after diagnosis: an unexpected, troubling doubling of ALC in 3 months. Like yours, this turned out to be no sudden explosion of CLL, nor a random spike, just for whatever reason an upward step. Nonetheless, in my case it was the only step of its kind, and otherwise my ALC increased very predictably, with a doubling time of 30 months until treatment nearly 14 years after diagnosis. Moral of story: the lower the ALC the less significant are deviations from trend.

Floydpup profile image
Floydpup in reply to bennevisplace

Thanks Bennevisplace for this insight.

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