Atypical lymphocytes..

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eveinca
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted Today 8:22 PM (GMT -6)   
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)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted Today 10:26 PM (GMT -6)   
I know it's scary to be facing the possiblity of this disease but your doctor is doing all of the right things sending you to the specialists.
I'm glad you're not pushing this aside. It's best to face this head-on and get the treatments needed to help you feel better. Ignoring your symptoms is not something you want to do with this- whatever it is.

My mother has at lot of the same bloodwork readings that you mentioned, except the positive ANA. She was diagnosed with a blood disease called Myodisplastic (?) Syndrome (MDS). She did have to have monthly shots and bloodwork. She doesn't need the shots now, but they do watch her levels regular.
I hope you don't have anyone of these but please feel free to stay with us and let us know how the testing and doctor visits go.

Do you know what your titer was on your ANA?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

eveinca
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/23/2013 1:56 AM (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)


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 6/23/2013 9:35 AM (GMT -6)   
Welcome to our forum eveinca. Besides seeing the oncologist, be sure to keep an appointment with a rheumatologist. I have a BS in medical technology, BSMT (lab) and have never seen an ANA report that didn't list the result. Results are often listed as a titer such as ANA 1:1200 or anti-double stranded DNA 1:6.
 
An important thing to keep in mind about routine lab tests such as a CBC and differential (diff) is that what the lab expects to see in a normal patient is called the "Expected Range." The expected range is established for hematology and chemistry analyzers by the lab using extensive runs of expected normal patient blood. Means are calculated with +/- 2 standard deviations. From the expected range there are always patients who consistently do not fall within range. I have a fellow BSMT and like you, always has a low WBC. The general population also frequently has a positive ANA with a titer below 1:360.
 
I am not trying to dismiss your concerns! I only want to ease your stress while you wait for more appointments and tests. Almost everyone will have atypical lymphocytes in their diff at any given time, but there is always a spike with mono. If you have dry mouth and dry eyes, be sure they test for the Sjogren's antibodies anti-SSA and anti-SSB, because Sjogren's patients have a slightly higher increase of lymphoma.
 
It appears to me that you are very concerned about your lab values, but you don't mention much about your symptoms. You may end up being one of  the rare autoimmune patients who gets diagnosed before the truly rotten symptoms start and you will be able to start treatment.
 
Once again, try to stay calm. Each day will pass whether you worry or not. Feel free to vent here any time. Love, Butterflake
 
 

eveinca
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/23/2013 11:46 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!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 6/23/2013 12:35 PM (GMT -6)   
Most hemotologist have offices with or near oncology clinics because there is a lot of cancers of the blood. My mom's hemotologist is in an oncology clinic too.

Good luck on Tuesday.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 6/23/2013 4:38 PM (GMT -6)   
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

eveinca
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/24/2013 9:05 AM (GMT -6)   
Hi Butterflake,

So then is it true that if, say, the neuts are low then the lymphs are going to compensate by being high? And the reason this is all of a sudden a problem is because of the atypical lymphs? This is my understanding at least. I also am finding that my lab does not seem to give certain values! No numbers for the ANA test and no % of atypical lymphs. I guess in the end I would just drive myself crazy with more information, but still find it odd that those values are not listed.

Glad you listened to you gut until you got a diagnosis. I have never felt more than now that, as patients, we HAVE to be our own advocates. No one cares as much about us as US! Have a nice day everyone, thanks for chiming in, Butterflake and couchtater!

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1650
   Posted 6/24/2013 11:08 AM (GMT -6)   
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
 
 

bluejeans
Regular Member


Date Joined Dec 2012
Total Posts : 269
   Posted 6/24/2013 8:57 PM (GMT -6)   
My blood work was lousy for several years before I was finaly diagnosed with lymphoma. My white cell count stayed around 2.5 and my iron count was so low they had to give me iron IV. Everything was screwed up. My spleen started to grow. I had a spleenectomy because the Drs thought it was growing because of the Lupus. When they removed it, I was diagnosed with B cell lymphoma. My blood work immediately became normal and I did not have to have cancer treatments.
The Drs watch me for recurrences, but so far no problem. They told me if it does come back it will be treatable, but not curable. I have to be careful about infections, with no spleen, but at least the lymphoma is gone.

The neutrophils are a good thing. They are what our bodies fight with. As long as your count of those is good you body has the ability to fight cancer or infections.

I wish you luck and you will be in my prayers.
Post lymphoma, Spleenectomy, Lupus, Sjorgrens, RA, Anti-phosphoid syndrome, Fibromyalgia, GERD, short bowel syndrome, scolisis, arthritis of spine, spondylosis, splondylesis, DDD,DJD

Faith in God, the love of my family and a good attitude keeps me going.

eveinca
New Member


Date Joined Jun 2013
Total Posts : 6
   Posted 6/25/2013 12:53 PM (GMT -6)   
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)

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