Newbie. Help with test results.: Hi everyone. I'm... - LUPUS UK

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Newbie. Help with test results.

BobCo profile image
8 Replies

Hi everyone. I'm new to the forum just wanted to say hi and ask for some assistance interpreting my blood test results. My GP rather honestly said he didn't know what the results meant, so I have been referred to a Rheumatologist I guess for further tests. The print out that I got was pretty low on detail. Anyway here goes: ANA Screen Negative. Antibody Screen Negative (against a large panel of antibodies including dsDNA and ENA specificities - I don't know what other antibodies were checked for). Complement levels normal. RF levels normal. Platelet count Normal, red and white blood cell counts are normal. ESR low, CRP low. Vit D has been very low in the past. I know on paper this looks good, but I feel like total crap with many lupus-like symptoms. Is it possible to be completely Sero-negative for Lupus and have it? Do the test results actually only mean it is an indication that you may have SLE or are they conclusive? Any assistance great fully received. Thank you. B.

8 Replies
Stef82 profile image
Stef82

I‘m not an expert either but even people with more „positive“ results will sometimes be told they don’t have Lupus. The biggest indicator is your ANA result, which can be from 1:40 to 1:2560. I have 1:2560 and have a mild to mid case of Lupus, even though this result is the highest they can detect. That doesn’t automatically make me a „strong“ case if you see what I mean.

Lupus is diagnosed through a mix of symptoms, Bloodtests and pure experience of your doctor. There are so many connective tissue illnesses and so little is discovered about them.

My advice is NHS Bloodtests are basic, private Bloodtests are comprehensive. If in doubt take out private health insurance if you can’t get your head around your symptoms but NHS can’t help. It might cost you a bit but will give answers and you can live much more normal again being diagnosed or send to another department for checks to a different illness. And usually the Doc takes a lot of time to go through symptoms, why you think you have Lupus and explains your situation to you as everyone is different.

Best of luck

BobCo profile image
BobCo in reply to Stef82

Thanks Stef82. I have private health insurance through my work. I will make some enquiries and see if I can get the comprehensive tests done.

Thanks again. B.

BobCo profile image
BobCo in reply to BobCo

Hi Stef82. I should be able to have a consultation and tests on my health insurance, probably no treatment though. Thanks for the advice.

katidid profile image
katidid

A diagnosis of Lupus is rarely made only on blood work. Presenting symptoms are considered as well. There are 11 criteria for Lupus. If meet 4 or more of the criteria you are typically assigned a working diagnosis of SLE as they investigate further.

Did your doctors talk to you about the diagnosis process?

BobCo profile image
BobCo in reply to katidid

Hi Katidid. No the GP didn't. The lab results said 'no further action required' so he kind of left it there....

katidid profile image
katidid in reply to BobCo

Oh yeah, no that's not right. It has to be a combo of presenting symptoms and (some) labs. They cannot rule out SLE based on lab tests alone. Go see a different doc asap!

Fennella02 profile image
Fennella02

I am very light on antibodies but I do have other other 'hints' such as low complement levels, raised ESR with normal CRP and low white blood cells. I also have a malar rash with intermittently red swollen joints. Vit D deficiency can cause a lot of lupus like symptoms as can B12 deficiency. Sometimes bloodnmarkers only become positive for auto immune disease after a long period of time (years ...). Do persist, there will be an answer. Good luck x

Paul_Howard profile image
Paul_HowardPartner

Hi BobCo ,

Around 95-98% of people with lupus will be positive for antinuclear antibodies (ANA), so it is rare for someone with lupus to be negative but it can happen. I've certainly heard of people who have SLE who are completely seronegative and some have had severe symptoms including kidney damage. Unfortunately not all rheumatologists will recognise seronegative cases.

It is possible that your symptoms could be caused by some form of lupus-like condition. In some cases this is diagnosed as undifferentiated connective tissue disease (UCTD) and it may or may not develop into lupus in the future. It is often treated with the same medications as lupus.

If you would like more information and advice about getting a lupus diagnosis, you may find our blog here helpful - lupusuk.org.uk/getting-diag...

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