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Old 07-21-2012, 07:07 PM   #1
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new poster, very abnormal labs but few symptoms

Hi everyone! I'm new here, and am posting because I'm not really sure what I have, and neither is my rheumatologist, but I've definitely got something. I'm interested to know if there's anyone similar to me here. I'm currently 34.

My current labs are very abnormal: ANA positive at 1:1280 with centromere pattern, positive anticentromere antibodies on 2 occasions, hypocomplementemia (low C3, normal C4... although both C3 and C4 dropped since they were last checked 3 months ago), persistent (greater than 7 months now) leukopenia (low white blood cell count) and neutropenia (low neutrophils - a type of white blood cell that fights infections). I have had a full workup done (except for Scl-70 or antimitochondrial - those have NOT been done). Everything else is negative.

My ANA was first noted to be positive in 6/2010 - drawn only for baseline screening by my headache doctor. I at first convinced myself it was a false positive, or could be related to my hypothyroidism, but it remained positive, and then the titer came back too high to be false or related to my thyroid. It has been positive ever since, and the titers have remained constant at 1:1280.

Interestingly, my WBC was first noted to be low when I was 19 - over 15 years ago. It dropped to 2.6 before it began coming up. My symptoms at that time were fatigue. They drew no other labs other than a basic metabolic profile (no autoimmune screening). Rare checks of my WBC since then have been at the low end of normal - in the 4s (with a normal lab range of 4-10).

Also, I had really bad mono when I was 7 - out of school for 6 weeks. EBV, the virus that causes mono, has been implicated in tons of autoimmune diseases, so I guess I was set up to get something.

Currently, my only big symptoms are dry eyes and dry mouth. I would have thought Sjogren's would have fit, except my Ro and La were negative. However, 15-30% of Sjogren's patients are Ro and La negative, so I figured I just had Sjogren's, as did my rheumatologist initially. However, then my complement got low, my leukopenia/neutropenia persisted, and my anticentromere antibody came back positive again. Although this could all STILL be Sjogren's, even with the anticentromere antibody, this particular constellation of labs (with the low complement) seem a little weird for just Sjogren's. Even the pattern of complement is strange - normally, C3 isn't low just by itself, so I have no idea what's going on.

I have had weight loss since 12/2008, and lost 15 pounds in the next 1-1/2 years, when I changed my diet (I eat VERY healthy now), and lost 20 more pounds. However, my weight has been stable for the past 6 months now, and I'm now at my ideal body weight. I have no rashes other than when I get the flu shot or a TB test (I work in healthcare so have to get both). I have minimal joint pain in my hands and toes - really minimal. I have 2 itchy spots on my body - over my right shoulder and on my right buttock. No skin thickening though. I have very dry skin, worse in the winter, with occasional skin cracking on my hands which goes away with lotion. I don't take good care of my skin though, and never wear my gloves or mittens outside (and I live in Michigan), so it could also be related to that. I do have fatigue, but I work at least 60 hours a week, so who wouldn't be tired on that schedule?

I've read a bunch of articles on pubmed, and some chapters from rheum medical books (cuz I'm a nerd), and the best I can come up with still is Sjogren's versus undifferentiated connective tissue disease with features of Sjogren's and lupus, with of course the irritating positive anticentromere antibody which is very rare except in limited cutaneous systemic sclerosis/CREST. However, I have no symptoms of that disease. It's also possible that I'm early on in the disease course, but with intermittent leukopenia going back 15 years ago when I was 19, it seems like this has actually been going on for a LONG time.... my greatest fear is that I have something truly terrible, like primary biliary cirrhosis, but my liver tests have been fine. I also found a journal article on pubmed tying anticentromere antibodies to some form of breast cancer, which freaked me out even more. I really need to stop reading!!

Anyway, if anyone else has had similar labs, I would really appreciate hearing from you! Or even if you don't, I'd still love to hear any advice!

Thanks in advance!!!
Marie

 
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Old 07-23-2012, 10:16 AM   #2
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Re: new poster, very abnormal labs but few symptoms

Anti-centromere antibody is also seen in lupus, which is where you would also expect to see low Compliment. And as you mentioned, Undifferentiated Connective tissue disease. Do you have Raynaud's? I also noticed that being infected with TB can raise your ANA, so it's possible that being tested often could raise the ANA level as well, without being the harbinger of disease. Do you have a high SED rate. In the absence of more symptoms other than sicca, I would have those treated if they are bothersome enough, and go with the "I'm good but I'll keep watch to see if more symptoms pop up other than wonky labs". And as far as the breast cancer thing, scleroderma can predispose you to cancer, but those studies are very small. Kudos for the great lifestyle. I hope that you don't get any further symptoms and only serve as a reminder that diseases cannot be diagnosed by labs alone and every patient is an individual, not some lab numbers.

 
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Old 07-25-2012, 05:05 PM   #3
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marielinn HB User
Re: new poster, very abnormal labs but few symptoms

No Raynaud's, and normal sed rate. I completely agree - I need to focus on living healthily and dealing with symptoms as they come, and not focus on labs. It's just been so scary!! Being in healthcare, I've seen some bad stuff and I don't want that to happen to me, of course... and I'm frankly puzzled by my constellation of labs, which is why I came on here to see if anyone else had anything similar. I love your attitude though - I will try to emulate!! Have a great night!!

 
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Old 01-14-2013, 10:55 AM   #4
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Re: new poster, very abnormal labs but few symptoms

Hi Marie,
My husband has had some similar results as yours. He has had a low WBC count for several years (in the past year, his WBC has dropped significantly), anemia, and a low C3 but normal C4. Unlike you, he has Raynaud's, and over the years, he has had some blood tests that showed abnormalities in his liver (but those numbers seem to shift from being normal to out-of-range). We have gone to a rheumatologist and hematologist, but they can't really figure out what is wrong with him. At this point, they have recommended just following his blood counts and monitoring for symptoms. In general though, he's pretty asymptomatic (other than the Raynaud's, which I think has gotten worse in recent years).
May I ask you some more about your experiences? It sounds like you've been dealing with these abnormal test results for a long time, and you mentioned that your rheumatologist isn't exactly sure what is going on. Can you talk more about what you've done in the past 10+ years in terms of which doctors you saw, what types of questions you asked, and what types of tests you ran? We've been going around for over 5 years going to several doctors and running a bunch of tests, and it just hasn't gotten anywhere. I'd really appreciate any thoughts on how you've approached your situation and who or what resources have been most helpful to you. Thanks!

 
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