Hi, I'm new here. I haven't been diagnosed, but some test results popped up

Hi Everybody! Nice to meet you all :)

I have an appointment with a rheumatologist this tuesday. At an appointment with my primary care physician, I asked about what to do for this periodic joint pain I get in my wrists, elbows, hips, and ankles. I thought maybe I'd get a rx for physical therapy. Well, he wanted to run the usual yearly check-up blood work and he added on 4 tests for rheumatoid arthritis (ANA, CCP, Rh, ESR). My CBC and metabolic panel came back totally normal. The ANA came back 1:1280 and the Rh was high also. The CCP and ESR were negative/normal. But the lab tests the ANA further if it comes back positive. There was some sjogrens ss-a and it was positive for anti-dsdna. So my primary Dr said I don't have RA but referred me to a rheumatologist to investigate further. So, of course while I wait for my appt, I Google these results. Now, I'm not a doctor (in case I didn't mention that before :D), so I won't try to diagnose myself. What I read mentioned SLE a lot, and I became worried. After reading about various autoimmune diseases, I was inspired to check my temperature- 99.5F; it was August 4th. So I checked every day after that, and it was always between 99.2-99.8 until a couple days ago (Aug 15), it was normal at 98.2. My normal has always been around 98.0. Today it's back to 99.2. Did I will that to happen?? So I'll add "mysterious low, low grade fever" to my short list of symptoms, in addition to what has felt like a 9 month long UTI, but doesn't produce a positive culture.

I know i will get most of my questions answered at my appointment on tuesday (hopefully!), but is this a familiar-sounding path? I feel like I've been pretty healthy. I've been rough on my joints with years of sports, dancing, and weight-training. Have I been staving off symptoms this whole time by exercising? Or is it ridiculous of me to worry if I feel relatively ok? I'm scared by what I read. I've kind of crawled into a shell and haven't gone to the beach/hiked with the dog/worked out once since all of these tests results have come back 2 weeks ago. I really have only had a check up 4-5 times in my 18 years of adulthood. I don't like to make something out of nothing. But I also want to know, of course!

All the best to everyone, and thank you for your time <3

18 Replies

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  • Hi monkey

    Good luck for your appointment on Tuesday. A lot of your diagnostic questions will be answered then. Your bloods do show there is something going on with your immune system, it's just finding out what!. Sometimes it's easier for doctors to tell us what we don't have rather than what we do!. Your temp can be indicative of inflammation or infection so tell your Rheumy about your UTI problems too. Keep us posted X

  • Hi Monkey14,

    Welcome to the LUPUS UK community here on HealthUnlocked.

    Would you like one of our free information packs? The pack is available to download via our website along with various other publications on lupus and the symptoms which you may also find helpful.

    Just go to; lupusuk.org.uk/contact-us/ to download the information pack. You will find the other information in our 'Publications' section on the home page.

    Please do feel free to get in touch should you require any further information.

    Best wishes,

    Hayley

    LUPUS UK

  • Hi Monkey14,

    You shouldn't feel as if you are over-worrying, as you have positive tests, but it sounds your doctor is really on top of things and sent you for all the right tests to catch what looks like autoimmune issues (Note: just my opinion, I am not a doctor either!). Don't be afraid to continue your activities if you feel ok, let your body tell you what your limits are. Probably one of the worst things to do is become sedentary, if indeed you do have lupus, as it is important to retain muscular and cardiovascular strength, and also helps to keep a good state of mind. As for your appointment on Tuesday, it might be helpful to list all of the symptoms you have noticed and when they started, anything from joint and muscle pain to rashes, hair loss, eye dryness, lung issues, fever, etc. I hope you keep us updated and if you need support or need answers to questions, this forum is great for both!

  • Lupus Blood Tests

    Blood Tests Used in the Diagnosis of Lupus

    Antibodies form in the body as a response to infection. When an invader (antigen) enters the body, white blood cells known as B lymphocytes react by making special types of proteins called antibodies. Antibodies are your body’s way of remembering an antigen; if it enters the body again, the antibodies will recognize it, combine with it, and neutralize it to prevent you from becoming infected. However, with autoimmune diseases such as lupus, the immune system can produce antibodies (auto-antibodies) that attack your body’s cells as though they were invaders, causing inflammation, damage, and even destruction. Several blood tests can be performed to detect specific auto-antibodies and help make the diagnosis of lupus. These blood tests are not conclusive by themselves, but combining the tests with certain physical findings can help to corroborate a diagnosis.

    Anti-Nuclear Antibody (ANA) Test

    Anti-nuclear antibodies (ANA) are autoantibodies to the nuclei of your cells. 98% of all people with systemic lupus have a positive ANA test, making it the most sensitive diagnostic test for confirming diagnosis of the disease. The test for anti-nuclear antibodies is called the immunofluorescent antinuclear antibody test. In this test, a blood sample is drawn and sent to a laboratory. Serum from the blood sample is then added to a microscopic slide prepared with specific cells (usually sections of rodent liver/kidney or human tissue culture cell lines) on the slide surface. If the patient has antinuclear antibodies, their serum will bind to the cells on the slide. Then, a second antibody tagged with a fluorescent dye is added so that it attaches to the serum antibodies and cells that have bound together. Lastly, the slide is viewed using a fluorescence microscope, and the intensity of staining and pattern of binding are scored at various dilutions. The test is read as positive if fluorescent cells are observed.

    Usually, the results of the ANA test are reported in titers and patterns. The titer gives information about how many times the lab technician diluted the blood plasma to get a sample of ANAs. Each titer involves doubling the amount of test fluid, so that the difference between a titer of 1:640 and 1:320 is one dilution. A titer above a certain level then qualifies as a positive test result. ANA titers may increase and decrease over the course of the disease; these fluctuations do not necessarily correlate with disease activity. Thus, it is not useful to follow the ANA test in someone already diagnosed with lupus.

    The pattern of the ANA test can give information about the type of autoimmune disease present and the appropriate treatment program. A homogenous (diffuse) pattern appears as total nuclear fluorescence and is common in people with systemic lupus. A peripheral pattern indicates that fluorescence occurs at the edges of the nucleus in a shaggy appearance; this pattern is almost exclusive to systemic lupus. A speckled pattern is also found in lupus. Another pattern, known as a nucleolar pattern, is common in people with scleroderma.

    It is important to realize that even though 98% of people with lupus will have a positive ANA, ANAs are also present in healthy individuals (5-10%) and people with other connective tissue diseases, such as scleroderma and rheumatoid arthritis. Moreover, about 20% of healthy women will have a weakly positive ANA, and the majority of these people will never develop any signs of lupus. One source cites that some ten million Americans have a positive ANA, but fewer than 1 million of them have lupus. Therefore, a positive ANA test alone is never enough to diagnosis systemic lupus. Rather, a physician will order an ANA test if the patient first exhibits other signs of lupus. This is because by itself, the test has low diagnostic specificity for systemic lupus, but its value increases as a patient meets other clinical criteria. It is possible for people with lupus to have a negative ANA, but these instances are rare. In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies.

    Other Diagnostic Tests

    In people with a positive ANA, more tests are usually performed to check for other antibodies that can help to confirm the diagnosis. Certain autoantibodies and substances in the blood can give information about which autoimmune disease, if any, is present. To check for these antibodies, doctors usually order what is called an ANA panel, which checks for the following antibodies: anti-double-stranded DNA, anti-Smith, anti-U1RNP, anti-Ro/SSA, and anti-La/SSB. Some laboratories also include other antibodies in their panel, including antinucleoprotein, anticentromere, or antihistone.

    Anti-dsDNA Antibody

    The anti-double-stranded DNA antibody (anti-dsDNA) is a specific type of ANA antibody found in about 30% of people with systemic lupus. Less than 1% of healthy individuals have this antibody, making it helpful in confirming a diagnosis of systemic lupus. [The absence of anti-dsDNA, however, does not exclude a diagnosis of lupus.] The presence of anti-dsDNA antibodies often suggests more serious lupus, such as lupus nephritis (kidney lupus). When the disease is active, especially in the kidneys, high amounts of anti-DNA antibodies are usually present. However, the anti-dsDNA test cannot be used to monitor lupus activity, because anti-dsDNA can be present without any clinical activity. Three tests are currently used to detect anti-dsDNA antibodies, namely enzyme-linked immunosorbent assay (ELISA), the Crithidia luciliae immunofluorescence test, and a test called radioimmunoassay.

    Anti-Smith Antibody

    An antibody to Sm, a ribonucleoprotein found in the nucleus of a cell, is found almost exclusively in people with lupus. It is present in 20% of people with the disease (although the incidence varies among different ethnic groups), but it is rarely found in people with other rheumatic diseases and its incidence in healthy individuals is less than 1%. Therefore, it can also be helpful in confirming a diagnosis of systemic lupus. Unlike anti-dsDNA, anti-Sm does not correlate with the presence of kidney lupus. Prospective studies have been performed as to whether anti-Sm correlates with lupus flares and disease activity, although evidence seems to suggests that it does not. The anti-Sm antibody is usually measured by one of four methods: ELISA, counterimmunoelectrophoreses (CIE), immunodiffusion, or hemagglutination.

    Anti-U1RNP Antibody

    Anti-U1RNP antibodies are commonly found along with anti-Sm antibodies in people with SLE. The incidence of anti-U1RNP antibodies in people with lupus is approximately 25%, while less than 1% of healthy individuals possess this antibody. However, unlike anti-dsDNA and anti-Sm antibodies, anti-U1RNP antibodies are not specific to lupus; they can be found in other rheumatic conditions, including rheumatoid arthritis, systemic sclerosis, Sjogren’s syndrome, and polymyositis.

    Anti-U1RNP has shown to be associated with features of scleroderma, including Raynaud’s phenomenon; it has also been linked to other conditions, such as Jaccoud’s arthropathy, a deformity of the hand caused by arthritis. Levels of anti-U1RNP may fluctuate in individuals over time, but this fluctuation has not proven to be a significant indicator of disease activity.

    Anti-Ro/SSA and Anti-La/SSB Antibodies

    Anti-Ro/SSA and Anti-La/SSB are antibodies found mostly in people with systemic lupus (30-40%) and primary Sjogren’s syndrome. They are also commonly found in people with lupus who have tested negative for anti-nuclear antibodies. Anti-Ro and anti-La can also be found in other rheumatic diseases, such as systemic sclerosis, rheumatoid arthritis, and polymyositis, and are present in low titers in about 15% of healthy individuals. These antibodies are not highly specific for systemic lupus, but they are associated with certain conditions, including extreme sun sensitivity, a clinical subset of lupus called subacute cutaneous lupus erythematosus (SCLE), and a lupus-like syndrome associated with a genetic deficiency of a substance called complement (a system of proteins that helps mediate your body’s immune response). In addition, babies of mothers with anti-Ro and anti-La antibodies are at an increased risk of neonatal lupus, an uncommon condition that produces a temporary rash and can lead to congenital heart block. Therefore, women with lupus who wish to become pregnant should be tested for these antibodies.

    Anti-Histone Antibodies

    Antibodies to histones, proteins that help to lend structure to DNA, are usually found in people with drug-induced lupus (DIL), but they can also be found in people with systemic lupus. However, they are not specific enough to systemic lupus to be used to make a concrete diagnosis.

    Serum (blood) Complement Test

    A serum complement test measures the levels of proteins consumed during the inflammatory process. Thus, low complement levels reflect that inflammation is taking place within the body. Variations in complement levels exist in different individuals simply due to genetic factors.

    Sources

    “ANA.” 8 April 2009. Lab Tests Online. 8 April 2009. American Association for Clinical Chemistry. 6 July 2009. – Link

    “Blood Tests.” The Lupus Site. 6 July 2009. – Link

    “Laboratory Tests.” Lupus Foundation of America. 6 July 2009. – Link

    Wallace, Daniel J. The Lupus Book: A Guide for Patients and Their Families. 1st ed. New York: Oxford University Press, 1995.

    Wallace, Daniel J., and Bevra Hannahs Hahn, eds. Dubois’ Lupus Erythematosus. 7th ed. Philadelphia: Lippincott Williams & Wilkins, 2007.

  • I appreciate everyone's responses so much. Thank you. I took my doggy on a long hike last night. It felt good and I know it made her happy, which makes me happy.

    I will keep you all posted on what happens with my appt. My parents are coming into town to come with me, that makes me feel way better too.

    My boyfriend doesn't really believe anything is wrong. Plus he's in recovery and I think he started drinking again this week. So trying to keep that off my radar : /

  • Hey!

    Good luck with the appointment. Most of your questions will be answered but unfortunately a diagnosis might be far off, I guess it all depends on how good the rehumy is. A lot of us wait months and years to get a clear diagnosis and for someone to listen so it's good you've had tests and are being reffered. Your bloods do seem like something is going on. The problem with lupus is it isn't just one test that will guarantee a diagnosis, and also a lot of tests can also be linked to other auto immune disease too. I hope you get some questions answered at your appointment and let us know how you get on.

    Oh, and I feel you with the uti symptoms, except my tests come up positive quite frequently, but sometimes they don't. Do keep an eye on it Becuase I went months with uti symptoms had kept having negative urine tests and I ended up in hospital with a kidney infection. So always make sure you press on with the gp and specialists if your getting symptoms of things but having negative results.

    Take care X

  • Hi everyone! I hope you all had a nice weekend. I was sad to say goodbye to the Olympics, but all good things must come to an end. Such fun though :)

    I saw the rheumatologist this morning. To recap, this is my first appt with any rheumatologist bc of positive ANA and some other antibodies that came up in July.

    He was very nice. He really doesn't think I have Lupus. He's running a few more tests that weren't run in July:

    *CRP

    *Anti-smooth muscle/mitochondria..

    *Immunoglobulins

    *Protein Elec + Interp Serum

    *Lupus Anti-coagulant eval with reflex

    He says there might be something going on but because my sed rate is so awesome (woohoo! :)) and that my only real symptom is bilateral achy joints, there's not much to treat. I told him I totally understand and that really this visit was to educate myself on exactly that, make sure there wasn't something alarming going on. I'm not in so much pain that I can't function. Other symptoms (related or not) aren't debilitating, they're annoying and at this point just serve as possible clues. But his big thing was the sed rate bc it shows there is no inflammation going on. That was good to hear :) I mean my blood work is all normal and has been for a year and a half. So that's largely why I was so scared. I was like, am I just a ticking timebomb? Eek!

    If there is an elevated/positive result on these tests, we'll meet to discuss. Otherwise, schedule for 1 year follow up, and call if any symptoms pop up. Anyone know anything about these tests? He mentioned the CRP is another inflammation indicator and that sometimes the sed rate can be perfect and the CRP be wacko. I haven't googled anything yet ;D

    All in all, it went well. I think his approach and explanation made sense. I'm not disappointed I don't have a diagnosis. I just want to know what's going on in there and if I have to be worried. This visit totally served it's purpose. Test more, remain vigilant, live life.

    Any input people have would be awesome! <3

  • A proportion of patients never mount the acute inflammatory response that raises the sed rate (or the CRP) - so it is possible there is inflammation.

    The sed rate or ESR is the rate at which the red blood cells settle to the bottom of a tune. CRP is a protein that is made in the liver in response to inflammatory states - the sed rate rises because of the presence of proteins on the outside of the red blood cells, CRP is one of them.

  • Thanks for your response PMRpro :)

    I was reading more about ESR vs CRP and while doing so, it dawned on me that with regards to my July test results that prompted this whole thing, I had begun to take Aleve each morning that week before work, per my PCP for elows/wrists. And I was an idiot and took it like advil, I was popping 2 of those before my shift! I happened to read the label and realized the dosage is 1 tablet (220mg) per 12 hours.

    Do you think my Aleve regimen could have affected my ESR results? I read that Aleve can lower the esr, but do they make a difference in the case of autoimmune disease? Also my ESR was 2mm/hr (reference range of <20mm/hr). Could the Aleve help that much, assuming it was even high to begin with?

  • This study

    ncbi.nlm.nih.gov/pubmed/213...

    suggests that NSAIDs will lower ESR/sed rate but don't change the CRP. The study was done in patients with an autoimmune disorder - giant cell arteritis. The reason for using NSAIDs is to reduce inflammation - and that should also reduce the proteins that contribute to raised ESR. One of the reasons doctors prefer the CRP test is that it is less influenced by such things.

    To be honest - I would be suspicious that your very low ESR is possibly due to you being one of the people who doesn't show a raised inflammatory response like me, my level is 4, it's never been above 7 even when I was really ill. But you can't be sure one way or the other

  • My CRP has never been raised, and sometimes my ESR is not that high even when I am flaring. These don't necessarily reflect lupus activity. I would be more concerned about the high ANA and anti dsDNA (anti dsDNA is fairly specific for lupus ). How did he explain these positive tests? Did he measure C3 and C4 complement?

  • Thank you for your reply, Bebe76!

    He said he didn't believe I had Lupus, but if i did, it'd be the more serious kind. He said that bc I have very little in the way of symptoms, that there's is no use in wondering if I "have Lupus" until symptoms start to present themselves. But he did want to check those levels he ordered today. He said the anti-dsdna was a low titer and that I could have had these antibodies for years and I'm alive now. So no worry. Hm... is that not good? Ugh, I go between feeling secure and like, "no way could there be anything seriously wrong with me" to "omg i'm dying." Should I ask about the c3 and c4? Are the other tests he's ordered going to help at all?

  • It seems like he is using the 'wait and see' approach since your symptoms seem mild. (I assume you did urine and blood tests to check your kidney function?). It might be because lupus is very unpredictable - you may never go on to get full-blown lupus, or you may spontaneously feel better, or it can progress over time. So, it makes sense to keep monitoring your bloods, and being vigilant in reporting any worsening or new/weird symptoms.

    C3 and C4 are complement:

    " Complement: The name of a group of proteins that protect the body against infections. They work by strengthening the body’s immune reactions. Complement proteins are used up by the inflammation caused by lupus, which is why people with inflammation due to active lupus often have low complement levels. There are nine protein groups of complement, so complement is identified by the letter C and the numbers 1 through 9. The most common complement tests for lupus are CH50, C3 and C4. CH50 measures the overall function of complement in the blood. Low levels of C3 or C4 may indicate active lupus. A new combination blood test is using a subset of the C4, called C4d, to help physicians “rule in” lupus and “rule out” other diseases and conditions."

    Source: lupus.org/answers/entry/lup...

  • The more I reflect on this appointment, the more annoyed I get. I forgot to mention some symptoms, but he would've explained away everything. He just sat there and waited for me to present him with my situation. I wanted a dr who would guide an investigation, have a ton of questions, and really be motivated to help me. But he really didn't seem to care. He also looked at his texts while I was talking. Kind of unreal. Like, what are you 12?

    I'm definitely seeking a 2nd opinion. No rush though, I'm waiting on these test results, which are available to me though the lab, I don't need him to give them to me :) Plus, my insurance co is sending me a list of rheumatologists on my plan in my state. So, I'm looking at this as a learning experience. Plus, I'll get more info from these test results. Ugh, I really go back and forth between calm and frantic when it comes to this.

    Sorry, just kind of wanted to get that off my chest.

  • Good for you for being proactive and seeking a second opinion. Lupus can be very hard to diagnose because we don't all have the same set of symptoms and not all rheumies are lupus experts and may not connect the dots. Better to get it right either way so you don't drive yourself crazy wondering. Good luck!

  • And I forgot to say, yes I had a cbc, metabolic panel, tsh/t4, urine analysis, and urine culture done July 29. All normal.

    I did notice my white blood cells have changed a bit in the last year and a half. The values are normal for my lab, but some are off from literature I read online. Plus just the shift in numbers looks freaky to me- neutrophil count down 5706 to 1791cells/uL and up in lymphocytes (x.25), eosinophils (x6). Again, not a doctor. But I can't wait to get to talk to one who cares. The wbc ratios look off compared to info online too.

    Thanks for all your help and just for listening. Means a lot.

  • Yes, lupus can indeed affect your blood counts, but alone it doesn't point to lupus. It's all part of a puzzle of symptoms that needs to be put together. Many of us on this forum got diagnosed after months, years, even decades of having weird symptoms. Your first rheumy has got the ball rolling by sending you for ANA test etc so at least it is probably a step in the right direction. You are doing a good job educating yourself and keeping track of your tests - you have to be your own best advocate. In the meantime try not to worry too much and keep doing things that make you happy like going on hikes with your dog :)

    This forum is great for advice and support. Here's a tip: if you want to update everyone or have more questions, try making a new post - it will be seen by more people because the 'Posts' section is ordered by date, and it will show up in the daily email updates :)

  • Ah! Thank you for the tip!! 👍🏼👍🏼👍🏼

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