Atypical lymphocytes..

Hello,

Late last year I was told that I may have Lupus or some autoimmune disorder. Positive on the ANA test, plus some of the markers that go along with it.  Positive UI anti-rnp and indeterminate anti-dsdna. 

After 8 years of chronically low WBC, High Lymph/Low Neuts I am now showing Atypical Lymphocytes in my blood work.  All this time my PCP has told me that, though the WBC numbers didn't fall in the "normal" ranges, that they were normal for ME and not to be worried about.  Twice in 8 tests I have actually come up with normal WBC numbers, but not most of the time.  I now know that the chronic low WBC could be related to the autoimmune issues and that even though I was not always positive on the ANA...(was negative 4 years ago)..that it could have been brewing all this time.

PCP is telling me that she is concerned about possible lymphoma and bone marrow problems.  This is why she is sending me to a hematologist/oncologist.  Of course I am pretty terrified and wonder if I have been sitting on a time bomb for all these years?  Was it just a matter of time before atypical lymphs showed up?

PCP also tested for EBV and I showed antibodies from having mono in the past, but no recent infections.  Not sure what if any bearing this has on my current blood work.

When I came up positive ANA about 7 months ago, I didn't want to deal with it and kept rescheduling my rheumy appointments.  Something clicked in me this past month, which made me get my CBC tested as well as make a firm appt.  with the rheumy.  Now I have one with the hematologist/oncology also.

Just wanted to now if anyone has experienced any of this and/or may have some input.

Thanks much!

Post Edited (eveinca) : 6/22/2013 8:34:36 PM (GMT-6)

Hi Couchtater-thank you for your post! I was never told the titer on my ANA. It's not listed on the lab paperwork and when I asked my doctor and then also called to ask the lab--they stated that they didn't have that info. Seemed kind of strange..
My antiRNP was marked "High" at 1.5 and the dsdna test was indeterminate at 6.

Now that I have decided to take action, I want to do it NOW. I really wish I had went to see the rheum. doctor 7 months ago, so I could have been monitored all this time.

Hope your mom is doing well and that you are, also. I will definitely update..

Post Edited (eveinca) : 6/23/2013 2:01:09 AM (GMT-6)

Hi Snowflake. Thank you for posting to me!

Yes, the lab work is what is freaking me out the most. The fact that I went all these years being told the low WBC/high Lymphs were just normal for ME--to being told that the atypical lymphocytes look "different" is concerning. Plus once my doctor mentioned "lymphoma" I pretty much heard nothing else! My PCP is great at ordering labs, writing scripts and referring out--but she does not have much input when it come to abnormal results. She admits that it is out of her scope, and in fact seems uncomfortable. That's contagious!

My WBC is 4.1 and the range my lab uses is 4.3-11.0. Most of the past 7 years my WBC was consistently in the 3.4-3.6 range. Never has it gone any higher than 4.6. My lymphs are 67% and neuts are 30%. Monos at a 2 and neut abs man is 1.2. My understanding is that when one component is high the other will be lower, automatically? Or vice versa.. Also, there is no reading as to the amount of atypical lymphs-just that they are "present"..

What made her test me for the ANA to begin with, was the symptoms I was having. Shedding hair, pain in finger and toe joints, over all scatterbrained. She even said before she tested me that she thought it was stress..(isn't it ALWAYS stress?) and/or just aging..(I'm 45). I really didn't feel bad, but had developed these issues that I knew weren't normal for me. Overall I feel fine, thankfully. Though I know that a lot of people feel fine and end up having some problems going on...

Even when the ANA tests came back positive, she still said she thought it could be "leaky gut" and told me to take probiotics. She also referred me to a Rheumatologist--that I have taken 7 months to actually decide to go see.

The joint pain comes and goes but I still have been shedding hair. So, it was part vanity/part intuition that made me decide that I needed to follow up. I go see the Rheumy in July..

Since my WBC have always been off, I periodically just request my PCP check my blood, to see where I am. This last CBC from a couple of weeks ago, I was even asked by her office why I wanted it done--when my last CBC 7 months ago was all normal? Something just made me want to check it NOW.

So, I went from thinking I was getting some peace of mind to an appointment with an Oncologist! The Mono I have not had for over 20 years, but was told that the "Igg" antibodies are present, with no recent infection. Not sure how that is determined, and my PCP has no opinion as to whether the dormant antibodies could have any bearing on my current test results. She has pretty much washed her hands of it, all questions to the specialists now.

I really appreciate your expertise on the subject and for chiming in. Not sure what to expect at the hema/onc. on Tuesday. It's so daunting to have my PCP tell me she is referring me to a hematologist but then when they call to set up the appointment they state they are calling from "the oncology department".. I guess we will see! Thanks again for any and all input!

Hi eveinca. It sounds like you've had many CBCs. I'm glad that you followed your intuition, but if the hematologist/oncologist finds nothing wrong with your blood, then there should be no reason to have a CBC done periodically, even with your low WBC.

You stated your lymphs are 67% and neutrophils 30%. This is your differential. A diff is derived from counting 100 WBCs (100%) and shows what percent are neutrophils, lymphs, monocytes, eosinophils, and basophils.

Immunoglobulins (Ig) are classes of proteins called antibodies. Sound familiar? Everyone has them and they are divided as IgG, IgA, IgM, IgD and IgE.  I don't know anything about how to run the tests so I don't understand "no recent infection." 

Trust your intuition, but please, please don't freak out. Stress makes lupus patients flare and I'm sure you're aware of all the other problems it can cause. See as many specialists as you need to until you have a diagnosis or are satisfied and get copies of your medical records from each doc. You may need them sometime.  My intuition told me something was very wrong with me, but it took two years and visiting over 10 different physicians for my lupus diagnosis. If you "know" something is wrong, be determined, but also be patient. Love, Butterflake

Well, with a differential it's not a compensation thing, it's a percentage. If one has high neutrophils, say 80%, then the remaining 20 % can be any combination of lymphocytes, monocytes, eosinophils and basophils. Most of that 20% will be lymphocytes, then monocytes and maybe a couple of eosinophils and possibly one basophil. The analyzers that run differentials do not separate atypical lymphs. Since atypical lymphs are a subset of lymphocytes, the atypicals have nothing to do with the overall percentage.

Unless the hematologist tells you otherwise, don't worry about the atypical lymphs or your low WBC count. You will drive yourself crazy. If you feel compelled, when you ask for a copy of your medical records, ask for a complete copy including diagnostic tests (lab, radiology, etc) and physician's notes. Also keep a log of your symptoms. Love, Butterflake

 

Hi there,

Just got back from the doctor. Didn't really get any answers--but feel like at least we are on a course to resolve my issues.

Doctor didn't really seem too concerned about the atypical lymphs, as my PCP was-or really the low WBC. He said it could just be normal for me. He said that the low neutrophils can be a problem and the absolute counts. He was pretty non committal, as would be expected--but next step is to see the rheumatologist in July and then follow up with this doctor a couple of days after that. He may still want to do a bone marrow aspiration, because he says that we should get to the bottom of WHY my blood counts have been like they are for so long. Obviously, Lupus is a big contender--but he won't rule out some sort of lymphoma or leukemia. He even said it could be two conditions...( ugh )

He did order more blood work and urinalysis. Wants to test for inflammation and some other things. So, now we wait a little more..

One thing that bugged me: When they took my temp, it came up with a slight fever of 100 degrees. I was taken aback, as I pretty much can always tell if I am running a fever--and did not feel feverish at all. Nurse stated that..."Oh, this machine doesn't really work that good.." (it was a temporal unit, that they run across your forehead and behind ear?) I asked her...if it does not work good, why use it? She said that it's just easiest to use. The second I got home I took my temp and sure enough...normal. So, this kind of turned me off a bit though in the grand scheme of things I guess it's minor. Maybe?

Thanks for all the input. Butterflake: He explained the percentages just as you did, and did not seem concerned about the overall WBC and lymph percentage. Again, it's the low neuts that are the concern it seems.

 : )

Post Edited (eveinca) : 6/25/2013 12:59:11 PM (GMT-6)