Worried about low platelets - do I have Chronic Lymphocytic Leukemia? (CLL/SLL) When will I need treatment?

[AussieNeil]

Bruising easily, cuts bleeding readily and taking a long time to stop, small, flat, pinhead sized red, purple or brown dots under the skin (petechiae) are all symptoms of a low platelet count. So when is a low platelet count potentially dangerous and what can be done? Firstly, having low platelets doesn't mean you have leukaemia! There are lots of reasons for a low platelet count besides having blood cancer, including prescribed drugs and even some foods and supplements! Idiopathic thrombocytopenic purpura (ITP) or immune thrombocytopenia, an immune disorder that is more common when you have Chronic Lymphocytic Leukemia/ Small Lymphocytic Lymphoma (CLL/SLL) is also a possibility. A CLL/SLL diagnosis is done by a Flow Cytometry test on blood or a biopsied lymph node, but your doctor would expect other symptoms to be present before checking for leukaemia, such as a high lymphocyte count, anaemia, night sweats, fatigue, unexpected/unplanned weight loss or frequent illnesses.

When is a low platelet count concerning?

The table below summarises the bleeding risk for different platelet count ranges. (The platelet normal reference range is typically quoted at between 150 and 450, but 5% - of the population can have counts below or above this range and be quite healthy - their normal is just slightly higher or lower than the other 95% of the population).

Platelets Symptoms

100 – 150 Little to no risk of bleeding

50 – 99 Increased risk of bleeding with injury

20 – 49 Risk of bleeding increased without injury. Spontaneous bruising will be seen (mostly on the arms and legs)

10 – 19 Risk of bleeding greatly increased

<10 Spontaneous bleeding likely

(Commonly, lab test results in the USA are a thousand times higher than those referenced above, due to the larger blood reference volume, so 100 in the above table corresponds to 100,000).

Platelets only survive about a week, so platelet infusions to bump up dangerously low platelet counts (under 10 if you are otherwise healthy and under 20 if you have a fever), only last about 4 days.

When do you need treatment if you have low platelets?

First off, the cause needs needs to be determined as that defines treatment options. Is the cause ITP or the more usual factors associated with CLL/SLL - bone marrow infiltration and possibly an enlarged spleen? It's common for treatments for CLL/SLL to suppress bone marrow production, so a safety buffer is used with the recommendation to commence treatment discussions when the platelet count trends below 100, with lower than that allowed in the latest iwCLL guidelines for diagnosis, indications for treatment, response assessment, and supportive management of CLL, provided the platelet count remains stable.

Update: 10th July 2022 Anaemia is common with CLL but you may not need additional iron. If you do, some tips on how to boost iron without reaching for supplements

healthunlocked.com/cllsuppo...

There is a spreadsheet template available which you can use to track your platelet and haemoglobin counts here:

healthunlocked.com/cllsuppo...

This reference explains the purpose of different blood tests:

healthunlocked.com/cllsuppo...

For a greater understanding of Chronic Lymphocytic Leukaemia, I highly recommend this CLL primer by Thomas J. Kipps, Freda K. Stevenson, Catherine J. Wu, Carlo M. Croce, Graham Packham, William G. Wierda, Susan O’Brien, John Gribben, and Kanti Rai (Many of those names will be familiar to those that have had CLL for some time).

ncbi.nlm.nih.gov/pmc/articl...

This is an unlocked post, purposely written to help those diagnosed with CLL/SLL and searching for answers on line, to better understand the relevance of their platelet counts. If you have a diagnosis of CLL/SLL and wish to learn how to live well with CLL/SLL, you might like to join our community on HealthUnlocked and become one of the 4,000 actively involved community members. You can read more about our community here: healthunlocked.com/cllsuppo...

It's important to appreciate the difference between locked (viewable only by community members) and unlocked posts (viewable by anyone searching for information on the Internet) before you submit a post or reply. More here: healthunlocked.com/cllsuppo...

Neil

Photo: Bruges canal reflections

[mrsjsmith]

Thanks Neil,

Perfect explanation that even I can understand and at 160 I scrape into normal.

Fabulous photograph. Bruges is somewhere I must see sometime.

Colettex

[Newdawn Administrator]

Excellent explanation Neil.

Just to stress an important line from your post;

‘Firstly, having low platelets doesn't mean you have leukaemia!’

This is important for anyone finding this link online whilst checking out their own platelet counts in general health terms. They may have no link whatsoever with blood cancer.

The tendency towards petechiae and bruising may also occur independently of low platelets in people taking Ibrutinib due to the anti coagulant nature of Ibrutinib. Certainly has with me!

Newdawn

[PaulaS Volunteer]

Thanks for this, Neil. Very helpful.

Looking at that lovely photo - the bottom half looks clearer than the top. Have you posted it upsidedown?

Paula

[AussieNeil Partner Administrator in reply to PaulaS]

Yes, purposely

[JigFettler Volunteer in reply to AussieNeil]

😅 made me look twice! Effective. Jig

[AussieNeil Partner Administrator in reply to JigFettler]

I was looking for something wonky to fit the topic .

[Newdawn Administrator in reply to AussieNeil]

This is what happens when you view things from the ‘land down under’ 😅

Newdawn

[Janie67 in reply to AussieNeil]

lol, I didn’t notice till someone noticed it. It’s Cool

[mrsjsmith in reply to PaulaS]

I wondered that as well.... 🤔

[JigFettler Volunteer]

...and there is the issue of giant platelets. If present can reduce overall count. Jig

[AussieNeil Partner Administrator in reply to JigFettler]

Good point, which reminds me of a point I neglected to mention. Even without giant platelets, it's the nature of platelets to clump together, potentially resulting in some larger clumps that are not recognised as platelets by the automatic blood testing machines. Instrument reproducibility for platelet testing is therefore quite broad compared to other blood test types. I have seen up to +/- 40 allowance mentioned, but +/25 or +/-10 is more common. That means that even with good instrumentation, you could have a sample of your blood retested and theoretically have reports of 140, 150 and 160 all from the same sample. That in itself is a very good reason to see what the result of another test in a month's time shows if you have a low result. In CLL, it's the overall trend that's important, rather than just a one off result, with platelet count variability showing how very important this trend monitoring is.

Neil

[Jm954 Administrator in reply to JigFettler]

and even very tiny ones such as Wiskcot Aldrich Syndrome. Always an exciting day to diagnose one of those - usually children.

ghr.nlm.nih.gov/condition/w...

Jackie

[GrapeGrower1]

This is one of those important topics that you whiz right through at the doctors office until you're actually in trouble. I especially liked the bleeding chart. Thanks,

Also like the pic.

[Peggy4]

Very clever! Took me ages to work out what was wrong. Great picture to demonstrate the post.

Peggy 😀

[SethB34]

Solid, clear stuff as usual. Thank you.