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Why don't my blood test results match how I feel?

I was diagnosed with RA in 2010 and for the most part felt pretty controlled until the last year or so. Usually my test results match how I feel, but not lately.

My blood tests are normal, but I don't feel fine

I just completed my blood tests; CBC, C-Reactive Protein, ESR, and ALT. Although all results are near, or within the standard range, I feel they are not showing the true picture of how I feel. My hands, feet, and hips hurt all the time, I have weakness and pain in my hands all the time, I drop things, and have noticed some minor balance issues. Argh!

I feel like my doctor does not understand or believe me! I am so frustrated. I start to question my own feelings - am I making a mountain out of a molehill? Any ideas or suggestions?

  1. Hi there , we appreciate you reaching out. I can hear the frustration in your words and you are absolutely not alone. While blood tests and checking RF can be beneficial in some cases, it does not always tell the whole story. How your numbers look, whether in the standard range or not, shouldn't have an impact on the believing of your symptoms from doctors. If you're hurting and experiencing these challenges, then they are very real. What you're feeling is valid, it is so important to work with a doctor that listens to all of you- not just what your blood work shows. Have you thought of potentially getting a second opinion? In the meantime, I wanted to share this article with you from our team member Tamara: She brings up how the test results rarely reflect how she's feeling, and talks about her experience with Vectra Testing- perhaps this is something you can bring up with your doctor too! I hope others can chime in, and that you know you're not alone. Best, Ashley ( Team)

    1. Linrae:

      I believe that RA is such a complicated condition that it is impossible now and likely in the future that any blood test can adequately assess it. I know that tests for inflammation will always be with us. Still, RA is so much more than inflammation. We will have scores for functioning and how our joints move. But none of these completely define RA.

      So I am with you, my numbers sometimes do not match how I feel. But before we despair about how we feel. Instead despair for how much we need to improve testing. Then smile and wish your rheumatologist the best, in his quest to find a better test.

      1. Thank you for your response, I spoke to my Dr today, we had a good chat, and he was supportive, encouraged me to continue with my normal treatments.

        1. Hi Linrae. Glad you were able to have a good discussion with your doctor. While there is certainly a place for the tests in evaluating and treating RA, as Rick said, there is definitely a gap in the capacity of available tests being able to adequately inform treatment (think about it - up to 30% of cases are seronegative and there is still no test to diagnose these individuals). Our contributor Kelly Mack (full disclosure - I'm her husband) wrote this article were she discusses how her rheumatologist starts every appointment by asking how she is doing - before looking any test results: He understands that her overall well-being is the goal. The tests are simply tools to help assess and get to that goal. They cannot take primacy. Wishing you the best. Richard ( Team)

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