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Blood tests - how often? Under what circumstances?

Discussion in 'Tests and Procedures' started by Mijan, Oct 28, 2010.

  1. Mijan

    Mijan Registered

    My doctors first checked all of my antibodies back in February. Everything. The entire rheumatological gambit. My ANA and lupus-anticoagulant test came back positive, my vitamin D was very low, but everything else seemed normal. They checked the ANA once more to be certain, and yep - positive again.

    However, since then, the only thing they've checked (at my request) was my sed rate. They ran basic bloodwork for my surgery, but nothing immunological. I had the rheumatoid nodule biopsied.

    I asked the doctor about when we were going to check my antibodies again, and he seems to feel that once per year is enough. He's going to run the ANA, ds-DNA, C3 and C4 again, but said that he didn't think insurance would cover the full panel of antibody tests twice within one year. Now I'm worried that they won't cover those four. At the same time, I thought they were supposed to at least check the lupus anti-coagulant test six months after the first positive.

    I've heard some people say they get their antibodies tested every six months. I know that a LOT has changed for me since they first tested my levels. What do you guys think? How often do you get your bloodwork checked? What did they re-check?
  2. Katharine

    Katharine Registered

    Hi there :)

    I think I just answered on the other post.

    I would say the anti-bodies (ANA) are the least important and many docs don't actually check them again after getting a positive for initial diagnosis but I can't remember if you have had positive anti-bodies already or not. The lupus anti-coagulant is usually checked a first time, then 6-12 weeks later (I don't know about 6 months).

    All other blood tests including inflammatory markers, vitamin D levels, iron, and so on are usually checked every 3-6 months unless you are very stable and have been for a long time (not your case as you are only recently diagnosed) and urine is also checked at the same frequency.

    My blood tests and urine are done every 3 months (sometimes 4) and include absolutely everything including ANA etc (but I think that's just the way my rheumy/hospital works).

    I don't know about insurance there and how it works. It may well be the reason why he doesn't want to do it more often as they are very expensive but at the very least ask to be able to check urine at home then unless it can be done (along with some of the blood tests maybe) by your GP in between.

  3. redknight

    redknight Registered

    Hi Mijan,

    One of the things I've noticed on here over the last month or so is that Rheumy's and hospitals vary so widely as to what they test and when. I've been diagnosed for five and a half years but I'm on weekly blood tests.

    I have only had a period of 6 weeks between bloods (and that has only been twice in 5 years!).

    Also the Moderators have pointed out in a few posts, that each lab has their own way of interpreting the results and, obviously, it depends on what your base rates were to begin with. Sorry to sound a little unhelpful but I wouldn't want you to mis-interpret your tests.
  4. Mijan

    Mijan Registered

    Hey Red,
    Don't worry - I'm not misinterpreting the tests. My wife is a medical technologist and RUNS those tests. Plus, I've taken enough courses in human immunology to understand what they mean.

    I was more wondering how often doctors usually wait between running those tests, what they re-test, and so on. I often hear six months, and I thought my own rheumy had talked about re-testing in six months, and now, he's indicating a year wait.

    Thanks for the info. I wonder if they check them so often because tests ordered by doctors are automatically covered in European countries. But you're right - my situation hasn't stabilized, and I'm seriously wondering if anything has changed. Mostly, I'm wondering if I'd get more clues now. Would anti-CCP or RA factor be positive this time? Or perhaps anti-ds-DNA or anti-Smith? I mean, serious clues here.

    But I guess I'll wait. It just bugs me not to test them all at once.
  5. Maia

    Maia Registered

    If things change significantly or they question the diagnosis and/or treatment decisions, then doctors may re-order the autoantibody testing. But otherwise, it is actually uncommon to repeatedly test any of the autoantibody tests other than ds-DNA here in the States. DsDNA may be retested more frequently because for some people that can indicate an increase in disease activity when that rises. c3 and c4 are not auto-antibody tests and they can also be used to measure disease activity so I will often have my c4 tested when I report I am flaring as for me it tends to drop when I'm flaring so this gives the doctors that "proof" they need to prescribe things like prednisone and other disease modifier medications. ANA is hardly ever repeated once a lupus diagnosis is given because a rise/fall in that has no bearing on disease activity so retesting that is useless and pretty much a waste of money.

    But other blood tests should be done more frequently, like the CBC, kidney functioning, ESR, and urine testing should be done every visit for a lupus patient.
  6. Mijan

    Mijan Registered

    I had urine tests done before and after surgery, but not in the past four weeks. With the amount of ibuprofen I'm taking, I'm kinda curiosus about that.

    I also wonder if antibodies change as diseases progress. I didn't know the ANA wasn't typically repeated, but I don't have a lupus diagnosis - they're working with a UCTD diagnosis right now. In other words, we're still playing the, "I don't know - it's something, but it's not settled yet" game. But I did have a positive ANA... so maybe that shouldn't be repeated? I don't know. I kinda want to discuss it with my rheumy now, and try to get a better understanding of this.

    I had the sed rate tested in the past couple of weeks, CBC a month ago, but that's it.
  7. Chelle Martin

    Chelle Martin New Member

    I was diagnosed with Lupus in 2015. I had several swollen organs, seriously inflamed pleura and dead lymph nodes throughout my chest and abdominal area. I started out taking 40 mg Prednisode and reduced it down to none and began taking Hydroxychloroquine in December 2015. Due to Aetna Better Health Medicaid, I wasn't able to get to a Rheumy until I switched to BCBS IL in 2016. He has only drawn my blood once for the initial consult. There has been no lab work done since. Should I be concerned--especially since I have had consistent symptoms without a remission? I've asked him directly but he diverts the question or doesn't say anything at all. In November, he decided to prescribe Gabapentin. I had it filled once but never took it because I don't feel he is doing right by my health issues.
    Last edited: Apr 16, 2018
  8. lazylegs

    lazylegs Moderator

    Hi Chelle,

    Yes you should be concerned. Regular checks of both blood and urine should be done. The frequency can depend on medications so it is different for everyone but I would think it would be once a year at a minimum.

    Take care,
  9. Chelle Martin

    Chelle Martin New Member

    I had a consult with both my obgyn, Dr Orhan, and my rheumy last week. Dr Orhan ran blood work on me because I told her that the rheumy hadn't done it but once in the two years I've been seeing him. She was upset about that. I noticed during both their exams I have a few swollen nodes, around the chin and some around the underarm areas. I go back to Orhan June 7 and she is going to check that out again. Fingers crossed that it's nothing!
  10. lazylegs

    lazylegs Moderator

    Lymph nodes can swell during flares but there can be other causes also so it is always good to get them checked out.

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