Worried Lymphocyte Count Up Platelets down - CLL Support

CLL Support

22,467 members38,603 posts

Worried Lymphocyte Count Up Platelets down

Strech51 profile image
14 Replies

Hi Please can anyone advise on my latest FBC. My Lymphocyte count has gone from 27.72 to 42.86 and Platelets down from 138to 116 in 2 months. I did have course of Oxybutynin for 3 weeks when I stopped as I had a rash appear and my legs and ankles very itchy. I didn't take the tab that night but still had rash in the morning that my bloods were taken. Cold this account for spikes in counts. Hopping so as otherwise very worried. Any help would be appreciated.

Written by
Strech51 profile image
Strech51
To view profiles and participate in discussions please or .
Read more about...
14 Replies
whmk profile image
whmk

Did you get vaccinated?

Strech51 profile image
Strech51 in reply to whmk

Vaccinated ?.

whmk profile image
whmk in reply to Strech51

Some see deteriorated blood counts after COVID vaccinations.

Strech51 profile image
Strech51 in reply to whmk

Thanks I have had both jabs last on 14 May 2 days after previous bloods. This was blood test for trial reason. Not effected after first COVID jab.

whmk profile image
whmk in reply to Strech51

After the first jab usually no effect. After the second jab, some people experience larger nodes and worse bloods. My suggestion is to take another test 2-3 months later to see what the trend is. But consult your doctor.

Strech51 profile image
Strech51 in reply to whmk

Thanks didn’t really think it about that happening. Kind Regards

lankisterguy profile image
lankisterguyVolunteer

Hi Strech51-

Here is a link to Dr. Susan LeClair addressing questions like yours.

patientpower.info/navigatin...

-

The short version is to look at overall trends of at least 3 results before taking any values as significant rate changes. Most doctors would look at the results you posted and decide to wait for a few more tests to see if that is just an abberation or something predictive.

-

And BTW. the CLL experts don't even bother calculating doubling time until the first value is over 30k, and many patients have ALC / Lymph# 5x to 10x your readings before significant symptoms appear that drive starting treatment.

-

Len

Strech51 profile image
Strech51 in reply to lankisterguy

Thanks. I have a meeting with CLL nurse on Monday hope she agrees with your info. Kind regards.

AussieNeil profile image
AussieNeilAdministrator in reply to Strech51

Hi Strech51,

Here are the ALC counts of 21 patients taken in the 6 months prior to a clinical trial. As you can see, it is not unusual to have increases like yours followed by a fall. That's why looking at the trend is so important.

With respect to your platelets, trends are arguably even more important, because platelets by nature clot. All you need is one clot and you get a lower than true result with automatic counting. Reproducibility of platelet testing results is accordingly challenging and the best I've seen for automatic counting reproducibility is +/- 10, with +/-25 and +/-40 also quoted. So it's quite possible to retest your first blood sample and get a lower count than the one you had 2 months later. If your specialist is ever concerned about the accuracy of your platelet count, they can request a manual count. The platelet count trigger for starting treatment is counts falling below 100, but it's not uncommon for specialists to delay treatment until they fall below 70.

I very much doubt your nurse will show any concern, but it's great you can meet with her.

Neil

ALC changes in 21 patients over 6 months
Strech51 profile image
Strech51 in reply to AussieNeil

Thank you so much as it seems somewhat reassuring. Its just the speed of the change that put me into a bit of a panic. I don't have seem to have any of the physical symptoms swollen lymph's etc or would that only co me later if there is a problem.Kind Regards

Strech51 profile image
Strech51 in reply to AussieNeil

Hi Just had a phone meeting with my CLL Nurse. Just as you say its trends that they monitor even if the Platelets are low they are looking at it being fairly stable . It seems that the more concerning aspects would be if my physical B symptoms became an issue. Fevers ,lymph's etc. Luckily I don't have any problems associated with them. Thanks for your info as I did benefit from your comments and relaxed a bit before the CLL nurses phone meeting. Kind regards

Astro617 profile image
Astro617

I had an ALC leap from 25K to 33K this year. The 33 was my highest ever. (Incidentally I had my blood drawn on the day I signed up for the COVID vaccine. In the US at that time getting an appointment for a shot was like a race. I got really really wound up and I will always wonder if all that adrenaline had anything to do with my numbers.) I get tested every 6 mos. But my new GP was so alarmed he asked me to get retested in 4 weeks. I got my 2nd COVID vaccine right about that time so I asked him if I could wait 4 more weeks. Thankfully my next test was a little bit down. Then he asked me to get drawn again 3 months from that. And I was down to 29. I have found that eating lots of broccoli makes my numbers go down. I try to eat at least one serving of cruciferous veggies daily and broccoli about 4 times a week. I think it works! And as was said above, it's trends, not just one test. But I know when you have a big jump like that it's scary. Wishing you well!

Strech51 profile image
Strech51 in reply to Astro617

Thank you. I hope thing will improve for me too although mine are a lot higher.

Astro617 profile image
Astro617 in reply to Strech51

I hope so too Stretch. Sending healing thoughts your way.

You may also like...

WBC going way down/platelets/lymphocytes way up!

that it was fine! Then my Lymphocytes % shot up about 20% and my platelets about 150 more!...

Should I be worried that my platelet count in last 6 months hasn't got higher than 127,000?

treatment as yet, should I be worried that my platelet count in last 6 months hasn't got higher...

ALC (absolute lymphocyte count)

blood report - are the Lymphocytes the same as the ALC, i.e. is this the only count I need to look...

ABSOLUTE LYMPHOCYTE COUNT

months. When I was diagnosed, my absolute lymphocyte count (ALC) was just over 5,000. Based on...

Gazyva and Low Platelet Count?

dell and lymphocyte counts are all “looking good”. My oncologist said the drop in platelet count...