Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

ITP + ANA Direct positive + RNP antibodies, but no symptoms?

More
8 years 1 month ago #60195 by mbernardo430
Hi all,
Quick update, and a couple questions. My husband, Matt, went for more blood work with an immunologist (due to a high IgE level when tested by the hematologist - IgA, IgM, IgG were all in the normal range).

The good news is his platelet count went up slightly 83k to 96k, which I was happy about. Also, there was a weird note on the report of the results. They bolded, "Actual platelet count may be somewhat higher than reported due to aggregation of platelets in this sample" - is that something to worry about? I tried to look up platelet aggregation but it was vague. It seemed like if the sample was sitting around for a while it could have caused the platelets to clump. The only other thing I found was that platelet clumping could be a flag for pseudothrombocyptopenia, but no one else has noted clumping except on this blood work. Should I assume that this "aggregation of platelets" was due to the way the sample was handled?

The rest of his results came back normal: red and white blood cell count were normal. Hemoglobin and crit were normal...Now comes the confusing part (the normal ranges are in parentheses):

Immunoglobulin E, Total 116 High (0 - 100)
Rheumatoid Arthritis Factor (RA Latex Turbid.) <10.0 = negative (0 - 13.9)
Mitochondrial (M2) Antibody 4.6 = negative (0.0 - 20.0)

ANA w/Reflex
ANA Direct Positive = Abnormal
Anti-DNA (DS) Ab Qn <1 = negative (0 - 9)
RNP Antibodies >8.0 = High (0- 0.9)
Smith Antibodies <0.2 = negative (0 - 0.9)
Sjogren's Anti-SS-A and Anti-SS-B <0.2 = negative (0 - 0.9)

So his ANA direct and RNP came back positive. And his RNP seems rather high. The doctor that ordered the test is out of town on vacation. And a general family doctor said the results don't really indicate much as they are only one result and he has no symptoms of Lupus or MCTD. I'm at a loss of how I should take these results? He was previous tested for ANA and it came back negative in November of 2016.

Do the current results mean he will eventually develop Lupus or MCTD? Should we go see a rheumatologist? Can he go back to the previous negative results if re-tested? Note: Matt tested positive for Mitochondrial (M2) Antibody back in November 2016, which scared the crap out of me. Since then all his liver blood work came back normal and he tested negative for M2 Antibody twice (March and July 2017). So could the same happen with the ANA and RNP?

Any insights and advice would be greatly appreciated. Sorry I know this isn't exactly ITP related. But the only real conclusion I'm coming to is that the 96k count, the ANA, and the RNP is telling me that his immune system is still in overdrive. Also, the only real behavioral change since this blood work and the last is that he started taking higher quality/organic vitamins (Thorne Research or Pure Encapsulations): a multi, Vitamin B12, selenium, papaya leaf, Vitamin C, Vitamin D. Would this cause the change in ANA and RNP? Thank you in advance. I'm sorry if my thoughts were all over the place. I'm still kind of reeling.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 1 month ago #60197 by Sandi
Hi. I'll try to answer your questions.

Platelet clumping can occur if the sample sits around too long. I've had that happen....it would come back unreadable and I would have to get retested and get instant results from the analyzers in the Hemo's office. Those 24 hour lab results sometimes just sit before testing is done. I wouldn't worry about that.

As for the ANA and RNP, do you have the ANA result? I mean the actual titer? The labs can indicate positive even if it is slightly elevated and in that case, it means nothing. 1:40 or 1:80 are low and do not mean much at all. If the titer is high, that can indicate possible future autoimmune problems but it's also possible that nothing will ever happen. Same with the RNP. If there are no physical symptoms, that is a very good thing. I wouldn't worry unless he does develop symptoms that can indicate connective tissue disease. I have Lupus, and had physical symptoms before my labs really showed anything. Most doctors will not give a diagnosis unless physical symptoms and labs match up with the criteria. Some autoimmune disorders can take a long time to fully develop and can take a long time to be diagnosed. Try not to worry about it. You could be worrying for nothing.

I don't think the vitamins cause any antibody changes. Some supplements like Echinacea can possibly stir up the immune system so you do have to research them first.

Anything else?
The following user(s) said Thank You: mbernardo430
More
8 years 1 month ago #60198 by mbernardo430
Hi Sandi! Thanks for answering. That helps a lot. So do you think the platelet count was accurate? Or if anything, I guess the actual count would be a little higher?

No, the results do not report the titer. From what I'm reading online it was a "direct" test and not a titer test, so it just marks the presence of antibodies or not. There's not a reported solution detection level. This blood work was run by an immunologist. I'm guessing if we went to a rheumatologist, they would run more specific blood work? Do you think we should go and see one because of the positive result despite no symptoms?

My only lingering question is whether the ANA/RNP could come back negative if retested? I guess what's bothering me is that these markers keep going from positive to negative (or vice versa) when retested.

Thanks again for everything. I really appreciate all your input.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 1 month ago - 8 years 1 month ago #60200 by Sandi
Antibodies can come and go so it doesn't surprise me that they would change. Mine have gone from positive to negative and back again several times. My doctors don't even really test them any more. No point, I already have a diagnosis. The titer matters a lot though if a person is being tested for a diagnosis.

It's your call about seeing a Rheumatologist. Some will brush a patient off if they don't have physical symptoms. There isn't much they would do prophylactically because you can't treat something that can't be diagnosed yet. Patients have to meet a set of criteria for a diagnosis and usually, physical symptoms are part of that. Depending on the ANA titer, your husband might have three red flags (ITP, RNP, ANA) for another autoimmune issue, but that does not mean that he does have or will ever have one. You already had a doctor advise you on this, and he is probably right. He'd tell you if there was something to worry about.
More
8 years 1 month ago #60207 by mbernardo430
Thanks Sandi. I really appreciate it. I think I'm just overloading myself with information on RNP and ANA. It's frustrating because some sources say that RNP will always lead to development of MCTD or SLE and other sources say it can turn negative and nothing ever comes from it (when no symptoms).

I guess we'll wait to talk to the doctor that ordered the testing and wait to see what she says. He's seeing the hematologist next week so we'll also mention the recent blood work. Thanks again!
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 1 month ago - 8 years 1 month ago #60208 by Sandi
Yes, talk to the doctors and go from there.

This is what happened to me. When I was in my 20's (1989), I had an odd antibody test result and the doctor told me that it could mean a possible connective tissue disease someday, like Lupus. I was healthy so I went home and went on with my life. I forgot about it. In 1998 (age 36), I was diagnosed with ITP. I still felt fine except when counts were low and when I was using treatments, so I did what I had to do as far as ITP and still went on with my life. In 2004 after using Rituxan and having a bad reaction, I began to have odd symptoms such as feeling flu-like, extreme muscle pain and fatigue. My Hemo did an ANA which came back elevated. I went to a Rheumatologist who basically looked at me, said I was fine and sent me out the door. He didn't do any additional blood work, just said that I didn't look sick. I was miserable every single day. I mentioned that to my Hemo who referred me to another Rheumatologist. That doctor did more testing, and I did have some other odd results like an elevated C3 and C4, elevated SED rate, but that still wasn't enough for a diagnosis.

He did monitor me every three to four months and kept doing the blood work. He helped me to manage the symptoms. Every single time I went to his office and he told me that I didn't have Lupus, I was elated. I didn't want it. But then I did a really stupid thing. My daughter was getting married so I had been going tanning. The heat actually helped my muscles and I felt great. But UV rays are known to trigger antibodies in those predisposed to Lupus. Soon after that, I developed horrible joint pain. Six months later, my labs changed and showed an elevated dsDNA and APS antibodies. Those were the clinchers for the diagnosis (2006). All that time I knew something was going on, but was always happy to hear that it wasn't Lupus. Until it was. That diagnosis turned my life upside down and things got steadily worse.

What I'm trying to say is that you can't live with a black cloud hanging over your head. If I had let that abnormal lab result and comment in 1989 bother me, I would have lived with fear for 17 years. Instead, I was just happy raising my three kids and living life. None of us know what is in our future and sometimes illnesses hit out of the blue. You have a heads up here, true, but it still may never happen.

Advice I wish someone had given me: These things are known to trigger Lupus - UV rays, sulfa drugs, stress and alfalfa. Odd list, but avoiding those things may prevent or prolong a diagnosis.
The following user(s) said Thank You: poseymint, mbernardo430
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
8 years 1 month ago #60213 by Hal9000
Sandi, have you ever thought about doing a web page or two about all the things you've picked up?
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 1 month ago #60215 by Sandi
Hal, I wouldn't know where to start. Any knowledge that I have is strictly experience and researching. I have no medical qualifications. I have also paid close attention to what has gone on with people here since 1998 and have formed opinions. None of that makes me an expert.
More
8 years 1 month ago #60221 by mbernardo430
Thanks Sandi, I really appreciate hearing your experiences. I'll let you know what happens when we speak to the doctors!

It's just so weird he has these antibodies without symptoms. Looking at MCTD/Lupus sites, a lot of individuals have all the symptoms and no lab work to support it. The irony. I'm praying he never develops either disease and that the antibodies return to a negative result...Thank you again for everything.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
8 years 1 month ago #60222 by Sandi
I'm sure there are many people who have odd labs first before symptoms. They just probably don't know it because if they feel fine, they don't get tested. Those are not routine labs and wouldn't be done on a seemingly healthy person. I had some odd labs over the years here and there (first one in 1982) but they were nothing to worry about until I began to feel bad.

Most people with ITP don't really find out until they get symptoms or a doctor runs a random CBC. They could have had counts in the 60's for years and just didn't know it.
  • LaurWinn
  • Offline
  • Diagnosed with Lupus in 1995 at age of 17. Diagnosed with ITP in 1998 at age of 20. ITP currently stable post treatment in 2014.
More
8 years 1 month ago #60234 by LaurWinn
Having had Lupus since 1995 and ITP since 1997, I thought I would echo Sandi's thoughts on the lab results.

My antibody tests fluctuate often between negative and positive. dsDNA for example - was through the roof high when I was diagnosed, then was completely negative for years during a remission period, and now has been on and off positive/high for the last 8 years or so. My ANA is always abnormal, but the titer does change/fluctuate. My SED rate is always extremely high, but my C3 and C4 complement levels fluctuate between normal and abnormal.

As Sandi says, the lab results are more meaningful when looking for a diagnosis. At this point in my disease, the lupus test results mean little to me. For example, I had labs done and saw my rheumatologist in April. My C3 level was low, but C4 was normal. SED rate was 90 (very high) and dsDNA was high (I can't recall the actual number, but it was high). However, other than some fatigue, I have no real symptoms (even my platelets are good right now) so there is no need for treatment. I see the rheumatologist every 6 months, but he only orders labs yearly*. As he told me many years ago, "we don't treat lab results, we treat symptoms". I've found this mantra especially helpful because when I was first diagnosed, I scrutinized every lab result for minute changes whether high or low, positive or negative. But then I realized that my lab results may be wildly abnormal, but I may be asymptomatic -- so there is no treatment needed. Lab results are a powerful diagnostic tool, but in some cases, symptoms (or lack there of) outweigh the lab results. Also, I've had times in my life where my lab results were pretty good, but I've had symptoms -- so this works in reverse as well. Just because the labs don't show terribly abnormal values doesn't mean I'm not having symptoms or issues.

*I should mention the exception to this is the CBC - my hematologist monitors my platelet count more frequently. This is solely to look for a downward trend - my platelets don't typically "crash" but tend to drop slowly over several months - so monitoring this more closely is fine by me. I still won't treat unless I drop below 30K.*

Take care,
~Lauren