Confusing Blood Test Results

[vam98]

Hi,

I just had an appointment with a rheumatologist and she suggested that I might have lupus. I get sun burn like rashes across my nose and cheeks that come on quickly and go away after an hour or so, and some other rashes and hives too (I had a scaly, patchy red rash under my armpits for 3 months that wouldn't go away). I have joint pain, fatigue, sores in my nose and have had a few sores in my mouth, and cold purple feet and cold blue hands (although my dysautonomia could be contributing to the purple feet). I also have livedo reticularis on my hands that I showed the doctor. The only thing that came back abnormal on my labs was my bilirubin level. The normal range was 0-1 and I was 1.3. My red blood cell count wasn't abnormal per say but it was toward the lower end of the reference range (reference range was 3.9 to 6 and I was 4.3). I was reading that elevated bilirubin can be a sign of autoimmune hemolytic anemia, which lupus can cause, but the RBC would usually be abnormal if you had it. I had a negative ANA and my CBC looked normal. Is it possible to still have lupus with these test results? Should I be getting blood tests done every few months now that we know I have symptoms of lupus and this elevated bilirubin level which can be associated with liver disease and autoimmune hemolytic anemia? If my doctor isn't concerned, should I find a new one?

Sorry if you're not supposed to ask for advice about these kinds of things here. I'm just a little concerned and haven't heard from my doctor yet.

[vam98]

I also have low grade fevers all the time which I forgot to mention! I'm 19/f if that helps.

[nanleighh]

Dear Vam98, The joint pain, fatigue, mouth and nose sores sure are indicative of Lupus. It took 10 years of symptoms for me to finally get positive test results. My experience with the rash is they don't go away quickly when I get one at last for quite a long time. I know that's not common for every person with lupus. I would say keep a notebook to keep track of your symptoms and see the doctor if anything worsens. You probably should have the test repeated in a year if your symptoms persist to see if anything has changed unless of course your symptoms worsen then you should be seen sooner. I hope you have good results in your journey, I know how frustrating this can be. Take good care of yourself and let us know how you are doing. Warmest regards,. Nan

[Paul_Howard Partner LUPUS UK]

Hi vam98 ,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

A negative ANA doesn't necessarily rule out a diagnosis of lupus, but it does make it less likely. Around 95-98% of people with lupus have a positive ANA, so there are a small number of cases where they don't. This result could suggest that you have some form of 'lupus-like' condition however such as 'incomplete lupus erythematosus (ILE)'. Did you have any other autoimmune antibody tests such as ENA, anti-dsDNA or anti-sm?

What has your doctor suggested as the next course of action? Is the rheumatologist going to continue monitoring you? Are they planning to trial any treatments to see if they can alleviate your symptoms?

If you'd like more information and advice about getting a diagnosis of lupus, please take a look at our blog article here - lupusuk.org.uk/getting-diag...

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download at lupusuk.org.uk/request-info...