Platelet Tail

ITP has been my diagnosis for some 18 years now. No big deal. However, changes have been taking place. I wanted to discuss with my hematologist/oncologist, but my husband was with me and ready to leave after sitting there for 2 hours. The appointment was rushed and I got no answers.

My platelets are in a good range, but starting to linger in the low 80's, which is lower than they have been. Add to that I am now having some lower ranges of my white blood cells for the last 5 years. They are below normal. The doctor is starting to think I am now moving into myelodysplastic syndrome. So, now I am on the wait and watch for this. I've been studying and learning about it.

Here is the other new thing, this is what I do not know what it means if anyone can help or direct me to something that explains this. The doctor was talking about a tail on my platelet differential. I see it on the graph. The count goes up, then dips down, and then there is this rise again. Apparently this is the tail that has him so concerned. Any thoughts?

Thank you for your assistance.

Pam:

I have never heard of a platelet tail in all of my years of dealing with ITP. Is it just a matter of fluctuating counts?

My hematologist/oncologist is seriously concerned about it. As I said, I could not ask questions as my husband insisted on going with me and with his dementia, he has a hard time sitting for a long time. My appointments have never taken that long before, but the day we went it was horribly long.

Apparently it is a sign of something going on and I'm not sure what it is. He has mentioned it in the past that there was a tail (kind of under his breath), but this time he told me he was very concerned. I thought I would ask if anyone had heard of such a thing. I think it has something to do with something else showing up in the blood. I know he thinks I am not ITP anymore, but Myelodysplastic. I am blessed my counts are not very low. Just wondering what this other means. Thanks for replying Sandi.

I'm sorry that we can't help you. I doubt it's related to ITP. Good luck with everything.

You are welcome to hang around if you'd like to.

I think you may be mistaking "distribution" with "differential". The "differential", as in "CBC with differential" refers to how many of each TYPE of cells there are. The "distribution" is used to refer to how many of each SIZE there are.

I am not certain, but it sounds like he was talking about the graph (histogram) of the platelet size distribution, which graphs the number of platelets at each size. Normally above some size there are fewer platelets as the size increases. By "tail" it sounds like he might mean an abnormally high number of what the machine reads as large platelets, but could be platelet clumping or other things.

Here are some graphs that might help:

allaboutblood.com/tag/platelet-histogram/

Pam -

Your situation sounds exactly like mine. My platelets are slowly dropping and now my WBC has started to go down. How are your red blood cell counts? I've heard of myelodysplastic syndrome (MDS) but it seems to me the primary and initial defining symptom is low hematocrit and anemia.

Best,
Jeff

Rob, I think you have it. My MPV is always high. So, yes, I do have large platelets, but this has been all along. The tail is something new and could be the clumping or other things. I did find some information last night that said the same things. The tail is an actual tail. Where the histogram shows a hill looking form to show how many and the size, when it goes down, then it goes back up. I'm going to wait until I get to go back and let him explain it all to me.

Jeff, I hate to hear that. MDS can be one, any, or all counts going down. There are several variants. My red blood cells have stayed pretty steady all along and are in the normal ranges at the low end of normal. I only recently learned the hematologist/oncologist suspects such a thing and have been studying it and on the MDS forum. They actually listed this one as well and I thought I might learn something here. What are your platelet and WBC levels?

I think the concern is that as well as the large platelets you also have small platelets. This does not indicate ITP although of course that depends on the count.

Pam -

My platelet count was 79, WBC 2.9. My WBC has been hovering at 3.0/3.1 for a while. My RBC have always been in the mid to high end of normal and are in that range now.

I do not have a diagnosis of anything as yet - we are watching. In 6 months another blood test and if they drop any more than a bone marrow test. And as yet - my hematologist has yet to suggest any suspicions that she might have concerning my condition.

I've been through this before - 12 years ago. The bone marrow test back then was negative, and the hematologist at the time did not find anything.

The possible wild-card is the fact that I am on testosterone therapy. The upshot is that higher levels of testosterone can suppress the immune system. And my levels have gone up higher than my PCP is comfortable with, so I'm off to get a 2nd opinion on my current treatment. Whether this is relevant, I do not know.

Bottom line though - I do not know what I have that is causing the low counts. And I'm not going to google and try and diagnose myself. Right now I feel good - and I'm going to enjoy it while I'm feeling good. The future will take care of itself.


Best,
Jeff

croaker24 wrote: Bottom line though - I do not know what I have that is causing the low counts. And I'm not going to google and try and diagnose myself. Right now I feel good - and I'm going to enjoy it while I'm feeling good. The future will take care of itself.

Best,
Jeff

You got it, Jeff. That's the most important thing.

Jeff...we are quite similar. My platelets were first discovered to be below normal 18 years ago and have stayed as such all these years. They were not at a dangerous level at any time. Rather they have continued to drop a little lower and a little lower.

I used to linger in the 130's, then the 120's, then the 110's. Now I am in the low 80's. Five years ago my white cells decided to drop below normal. They have not been bad low, but in December they decided to drop to 2.9. The 2.9 would not have been so bad, but it is the break down of the white cell counts where some were lower than others and caused my ANC to be at a level where I avoided going out in public during the flu outbreak. They have gone back up, but are still below normal.

I have spent these last 18 years feeling quite well, ran a couple of half marathons, several 5K's, and even did a duathlon and won my age division. I'm very active and enjoy life to the fullest. You are right to do the same. If things change and the doctors see a problem or you are not feeling well, then you get it checked out. Even then, it is good to keep a positive attitude and enjoy life. This is my philosophy.

Since the beginning of all this, ITP and thrombocytopenia have been written down as the diagnosis for me. It is the changes in what my platelets and wbc's are doing that appears to be changing everything. I pray you will continue to do well. You are doing the right things. It's not good to google and self diagnose as there are many things that could be the cause of your counts. Take care of yourself and as you said, "the future will take care of itself."

I had been on this forum reading in the past and also go to the Marrow Forum lately as it deals with the MDS, which apparently I am moving into. I will probably just go to the Marrow Forum now. I just thought I might be able to find someone who would know more about the platelets and what they are now doing. Thank you all for your thoughts and comments. I will be keeping you all in my prayers.

Pam, have you found out anything new? I'm hoping to exclude MDS as a possible diagnosis of my moderately low platelet count (66) and mildly low WBC (3.5). Most subtypes of MDS result in lowered RBC (my RBC is normal) from what I have read but there is a subtype called RCMD which can cause a low platelet count and WBC. BUT, according to the way some sources describe RCMD, it would be the Neutrophils in particular that would be low (in my case it's my Lymphocytes that are slightly below normal at 0.9 but my Neutrophils are OK). I've been trying to find out which definition of the subtype is more accurate...

No not yet. I actually go to see my doctor on Wednesday and hope to get some answers. I only see him once a year as my primary keeps a check on my levels the rest of the year. I will let you know what I find out. I don't think they will type or subtype until they have more information. I haven't really studied all the types and subtypes yet. I read through them, but that was it. Anyway, I will get back with you after I see him. Thank you for asking.

Good luck with your appointment and I hope that you get some answers about what's going on!