Lupus test?

[Bubble89]

Hi!

I posted on this forum a little while back (though can't see my original post any more - no idea what I did there!). I've had a long list of health problems for around 10 years now, which have progressively gotten worse throughout my 20's. I was diagnosed with fibromyalgia in 2015, but last year decided to move doctor's as I didn't feel we were getting anywhere.

My new doctor found I had anti thyroid antibodies last summer and was hypothyroid, so began me on treatment. This explained some of my symptoms but not all, and I've continued to feel awful. My doctor seems to feel there is something else auto immune going on and has been completing other tests.

In November I tested positive for lupus anticoagulant, which I know is to do with my blood rather than lupus itself. The doctor seems to be leaning in that direction though, and wanted to run more tests when I had my thyroid bloods done in February. On my form he wrote that I'm diagnosed hypothyroid, fibromyalgia, lupus anticoagulant +. He's asked for full thyroid panel, full blood count, various vitamins (was folate and vit D deficient when thyroid was discovered) renal and kidney profile, and 'lupus test'.

Most of the results are back and everything apart from albumin (was high) is well within range. 'lupus test' is showing on the results sheet as pending still.

My question is, what is this test? From following this forum I know there's no one test for lupus. I'm also guessing it would say ANA if it was that. I'm confused about what this test is looking for, or if this is another check of the lupus anticoagulant. I'm meant to see the doctor tomorrow but I'm going to postpone the appointment until this result is back, it's been nearly 3 weeks since these bloods were done so it's taking a while. I just want to go into my appointment with an understanding of what this test is!

Thanks for your help.

[whisperit]

Hello Bubble89

It's an ambiguous term, isn't it? I've noticed that some medics seem to use a particular shorthand for blood requests possibly because some labs have their own codes and useages. My guess is that it probably will be the ANA plus a breakdown including dsDNA if indicated by the ANA result. But that's only a guess. It should be back soon anyway - hope it is helpful x

[KayHimm]

As Whisperit said, your doctor likely ordered the lupus screening — an ANA test. The lupus anti-coagulant can be positive in APS patients or in lupus patients. It is one of the tests used in lupus classification and diagnosis. It is very confusing. Your doctor sounds on top of things. That is good.

[Bubble89 in reply to KayHimm]

Thanks both. It is all very confusing! I spoke to the surgery earlier and they said there aren't any pending results showing anymore so I'm guessing it's back. Going to go to the appointment tonight and find out what I can.

Thanks! I no doubt will be reporting back when I have more info

[KayHimm in reply to Bubble89]

Yes, keep us posted.

[Chanpreet_Walia LUPUS UK]

Hi Bubble89,

An ANA test confirms whether or not a person has an autoimmune disorder. Around 5% of lupus patients have a ‘negative’ ANA test result.

dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

Here is some information on lupus anticoagulant (LA) which I hope you find useful:

“This inaccurate and confusing name is given to the second test for APS (Antiphospholipid Syndrome). Lupus anticoagulant is in fact a double misnomer and is NOT a test for lupus and is not an anticoagulant. Unsurprisingly, many people assume they have lupus when they are told they have tested positive for LA but this is not true – they are testing positive for the aPL associated with APS”. (aps-support.org.uk/about-ap... Antiphospholipid antibodies are present in about 30-50% of people with lupus.

How did your appointment go?

Best wishes!

[Bubble89 in reply to Chanpreet_Walia]

Thank you, this is really helpful!

My appointment went well. I'm actually in shock a bit. So, it turned out my 'lupus test' result isn't back yet (annoying after being told this morning that it was). But I talked through my concerns with him and everything that has been going on over the years, pre me switching to see him last summer. He showed me that I had indeed tested positive for the anticoagulant in November, but that in July he had requested a lupus test then (the same one he has rerun and we're waiting for this time) which he said showed as 'weakly positive'. I didn't know about that test, I had no idea he had requested it as I thought he was only focused on my thyroid at that point. It looks like that positive result was what led him to test the antiphospholipid.

I'm going to wait for this second test to come back and then get print outs of the one from the summer and this one so I can see what the results actually are. But the long and short of it is he really listened to me and he's referring me to a rheumatologist, and a cardiologist to look at the concerns about my heart.

I'm so grateful I finally plucked up the confidence to change GP's. I actually feel in shock. I've spent so many years being told my bloods are normal or that tests are negative, I go into every appointment expecting nothing to have changed and with my battle armour on. But it looks like FINALLY, how rubbish I feel is starting to show up in my bloods. I had pretty much accepted this cycle of saying something's not right and being told I'm wrong was going to go on for the rest of time!

I'm going to try not to get my hopes up for the Rhumatology appointment, but today that referral feels like an enormous victory!

Thanks so much for all the advice. It makes such a difference. The forum has helped keep my confidence up long enough this time to make sure I'm really being heard and it's starting to feel like it's paying off.

[KayHimm in reply to Bubble89]

That all makes sense. Your doctor was exploring every avenue. He is seeing signs that you have autoimmunity and has been trying to get a handle on things. I think you you are in good hands. I wound be surprised if the rheumatologist shakes off a positive LA and low positive ANA and referral from a GP. Try to be patient. You have been symptomatic for a long time but you already have positive labs.

[eekt in reply to Bubble89]

Well done, brave warrior! A listening doctor makes a HUGE difference, and you're making enormous strides in the right direction to a treatment plan for whatever has been ailing you all this time...this forum has really given me courage too! xxx

[Bubble89 in reply to eekt]

Looking back now, I can see how damaging this process has been for my confidence. Things went on so long that I really started to doubt my own sanity! I paid for a lot of private therapy because the doctor I used to see was so adamant that my symptoms were psychosomatic. I completely lost the ability to stand up for myself or discuss my concerns. Having a doctor who listens makes such a huge difference. And being on here has really helped me to remember that I'm not crazy and I know my own body!

[eekt in reply to Bubble89]

It's horrific, the abuse we have to go through because some doctors are very unknowledgeable about autoimmunity...hopefully now that is all the past, you'll be able get to being the confident person you are swiftly xxx

[KayHimm in reply to Chanpreet_Walia]

I hear this a lot about the lupus anti-coagulant. It is, in fact, part of the lupus classification and used in diagnosis, especially when the ANA is negative. I know what you are trying to say. It is not, as the name impies, just a lupus test. But it is an antibody seen enough in lupus to be in the classification like anti-DNA. Just think it needs a little clarification. In Bubble’s case, her doctor did do the test because she had a mildly positive ANA, along with systemic symptoms, and then did tests for more specific antibodies. So it is, in a sense, a lupus test. Years ago, before, there was good testing, I had the VDRL test, which looks for a related antibody to the LA. Now the test is anti-cardiolipin, seen in lupus and APS. I am not sure the best way to describe it to patients who undergoing tests, though.

[KayHimm]

Yes, I am aware of that. But it is also in the immunologic criteria of the lupus diagnosis. Please see the ACR diagnostic criteria for SLE, the SLICC criteria and the proposed new criteria. You will see the progression of anti-phospholipid antibody testing and the expansion in lupus criteria as new ones are identified. It is part of the immunologic criteria as as anti-DNA and ANTi-SM. It is irrelevant whether a person can have the antibody on its own. Lupus is a multi-system disease, and the diagnostic criteria is reaching for the most sensitive and specific of the signs and symptoms. The anti-phospholipid antibodies were first seen in lupus patients. The VDRL test was discovered by Graham Hughes to be the anti-cardiolipin test, which is now part of lupus diagnosis. What you say is correct of all of the auto-antibody testing. You can have the antibody but not the disease. It is a constellation of symptoms. The fact is anti-phospholipid antibodies are part of lupus classification.