Tested positive ANA titre 320, speckled

[Sue320]

I have Hashimoto’s which was diagnosed about 4 years ago. I’ve been running low grade fever, fatigue, achy muscles for awhile so went to GP. She did bloodwork but I’ve only had one short convo with the nurse and she said I tested positive ANA but negative for Lupus. I went in for several more blood tests and was told it would take 3 weeks before the results were in. I asked what it was for but the tech said she knew but not specifically which was ridiculously not an answer. Any idea what else they might be testing for? The office has a message board and I’ve asked 4 times for them to please post my bloodwork results as I’d like to see what they see. The only response I got was the dr does not want to release them yet. I’m in the waiting game. I don’t feel miserable just not 100% either. I’m not frantic or worried more curious and want to know what’s going on. Anybody relate or have any input? Thanks!

[Hidden]

This would probably be the full ENA panel which includes more specific antibodies for other rheumatic diseases such as RA, Sjögren’s, Vasculitis and Scleroderma or MCTD. Being ENA negative for RA or Sjögren’s is more likely than Lupus or the others.

Only about 5-10 % of those with Lupus are antibody negative but I believe about 30% of those with RA, UCTD and Sjögren’s are serum negative although most have positive Rheumatoid Factor or ANA. For example I have lip biopsy positive Sjögren’s plus Hashimoto’s and my ANA has been same as yours - but nucleolar pattern found more in Scleroderma and my ENA panel is always negative. I was initially misdiagnosed and treated for RA.

This is probably why your rheumatologist is not wanting to release the results to you yet - they don’t want you self diagnosing or worrying unduly because diagnosis can be so very complex with seronegativity and the symptoms you describe could equally apply to any rheumatic disease. I know exactly how frustrating it is to wait and wait but most of us have been there so you aren’t alone!

[Sue320 in reply to Hidden]

Thank you so much for your reply. I hate waiting haha. But I’m thankful they are doing extra labs rather than saying “let’s just wait”— so I will be patient. I know something isn’t right. I’m normally pretty energetic and healthy but I’ve really always had these fatigue/fever/achy bouts that come and go. So I expect they are doing the panel as you said, and will just wait and see what’s next. And I guess take ibuprofen in the meantime. Thanks again!

[Paul_Howard Partner LUPUS UK in reply to Sue320]

Hi Sue320 ,

Hidden has given you some excellent information and advice. It certainly can be difficult to wait during a time like this when you know there is something unexplained happening with your body. Please keep us updated with how you are getting on.

[Sue320 in reply to Paul_Howard]

Thanks, Paul. So far all of the sub tests have come back negative so that is good. Does not explain the low grade fevers and fatigue. For now I’m going to just carry on and rest when I need to and enjoy when I feel normal and not worry about it— as best I can!