Blood test for query lupus. Road to diagnosis

[Cutiecutie]

I have family history of lupus and I have been experiencing lupus symptoms and it was made worse when I had covid. When I recovered my GP took bloods for clotting and lupus anticoagulant test. Is this how your GP managed your query lupus as well? I was expecting routine bloods esr and ana. I thought lupus anticoagulant shouldn’t be a diagnostic test for SLE?

[whisperit]

Hello Cutiecutie

You're right. the lupus coagulant test is not a test for lupus/SLE. In stead, it is one of the indiocators used to diagnose Antiphospholipid syndrome. a clotting disorder. Don't ask me why it was given such a confusing name!

If you haven't seen them already, you might find the LUK leaflets about diagnosis, symptoms and other matters helpful. If nothing else, they might be a guide to talking through your symptoms with your GP and getting them to clarify their thoughts! lupusuk.org.uk/publications/

x

[Cutiecutie in reply to whisperit]

Thank you!

[jimbo1605]

Hi Cutiecutie (love the name by the way)

Just to echo what whisperit has said but to add :

The more you get into Lupus and other autoimmune diseases you realise it is far from an exact science and takes a long time for nearly all people to reach a conclusive diagnosis.

From what I have read the immune response to covid19 is very similar to SLE. This includes Hughes syndrome, APS or sticky blood. I suggest your Gp's thoughts are more to check whether you have this, given the presence and severity can be serious. Then to work out what the cause of it is.

I am afraid you have many more bloods ahead of you to find the answer. The lupus diagnosis can only be made by a rheumatologist so you need a referral and try and get referred to someone who knows something about lupus.

Good luck on your journey

[Cutiecutie in reply to jimbo1605]

Thank you, but I had a chat with her yesterday why she ordered for lupus anticoagulant test and responded that it is specific to lupus because it tests for lupus antibodies. It’s not very comforting to hear.

[jimbo1605 in reply to Cutiecutie]

Cutiecutie,

There are literally hundreds of blood tests to prove / disprove SLE / other autoimmune. Some people just have a few most have a lot more in the search. In addition bloods are only one part of the picture - your symptoms, other conditions are all evidence.

Dont worry this is on the path to getting better or at least ruling out something.

This forum and the individuals who contribute to it (me excluded) are outstanding - there is a lot of experience for your to draw on.

[Cutiecutie in reply to jimbo1605]

I know that as I am a nurse myself and I grew up with my mum and aunties being diagnosed with these autoimmune disorders albeit in the Philippines, it’s a journey. And considering the « new normal » it’s challenging to get a day off to sort out your health and go to the surgery to get blood test done. I think I’m just disappointed with the communication - that I was told I will have a lupus test and I was expecting ESR and ANA as they’re basic/ recommended bloods and ended up getting clotting (borderline) and lupus anticoagulant (negative). With that I was dismissed as lupus negative just like that

[jimbo1605 in reply to Cutiecutie]

Cutiecutie,

If you have got clear symptoms of SLE (documented well on the lupus Uk website). Then I suggest you request a more comprehensive series of bloods :

ESR / CRP

Complements C3,c4,ch50

eGFR

Rf

Antibodies Antism,antidsdna + others

LFT

FBC

There are loads of others depending what comes out of the above but broadly they are :

Is there inflammation ?

Is there organ involvement kidneys,liver, lungs etc

Are there antibodies present

Is the immune system working normally

I suggest if you look at the criteria for diagnosing sle based on BCR that is widely used.

[eekt in reply to Cutiecutie]

Yes, ask for the tests jimbo has suggested, taking the table showing them from the SLE guideline he mentions: academic.oup.com/rheumatolo...

It's sad but many GP's know little about SLE, and I'm sorry to hear yours dismissed you after performing the wrong test (it's now uncommon), but you'll fare well armed with the guideline, your professional experience and unfortunately your family medical history. Try a different GP!

All the best xxx

PS a name that brings a smile, thank you!

[baba in reply to Cutiecutie]

I think you know more than your GP

[Cutiecutie in reply to baba]

thank you everyone, I appreciate all your comments 💙🌈🦋

[MaggieMae8]

I tested positive for SLE when I had two massive Blood Clots within my Hepatic and Mesenteric Veins. Now, since 2002 I’ve been on Warfarin daily and I’ve been treated for SLE. My Lupus, unfortunately has gotten worse over the years with organs involved but God is Good All the Time! He is the Best Blessing One Could Have! He Has Brought Me Through ALot With This SLE. I’m Grateful. Any more questions, just ask like I said I’ve had SLE for awhile now. I may can answer them or send you to the right resources. Have a Great Day!

[MaggieMae8]

I read the comments above, I agree with jumbo-You need a Rheumatologist. Fortunately, I was in a hospital environment when all this occurred and had several Doctors appointed to my care. Therefore, they all ordered blood tests and determined the diagnosis at the time of discharge from the hospital, which both stays were lengthy, I might add. So, please seek help from a Well Qualified Rheumatologist.

[KayHimm]

Very odd. Is there any chance your GP is ruling out anti-phospholipid antibody syndrome? A second year medical student would know to run an ANA test. That is not hard. Did she say she was specifically looking for lupus?

Actually, I wonder if people who have APS don’t get a full panel of lupus antibody tests to see where they stand. So this is puzzling.

I think I would just ask straight out why you weren’t tested for ANA. You could do that when your LA and other tests are in.

Though a rheumatologist may make the final diagnosis of SLE in most cases, I would be surprised if the NHS permits a rheumatology referral without the GP doing appropriate testing first. That is just my sense after seeing many people on the forum denied a referral based on NHS guidelines.

Please let us know how you make out.

K

[Cutiecutie]

I got the clotting (borderline) and lupus anticoagulant (negative) results and I never heard back from her and my online results said no further actions needed. She told me she will test me for lupus because of my symptoms and family history. When I asked her why did she ordered these tests, she said it’s for lupus and I don’t have lupus.

[Cutiecutie in reply to Cutiecutie]

This is when I contacted her what’s next because I am still having « lupus » symptoms and she said my results was negative.

[KayHimm in reply to Cutiecutie]

I think the only way to clarify this is to ask specifically why the ANA was not done. Totally understand why you are confused.

There is no way a UK GP would not know to do an ANA if ruling out lupus. She knew enough to do the less common test which would indicate certain auto-antibodies that lupus patients often have.

What symptoms got worse when you had COVID?

Really sorry you are left in this position.

K

[Cutiecutie]

I think she just chose a blood test with lupus in it. I asked her why ANA was not ordered and she told me lupus anticoagulant is already for lupus and it detects antibodies. I’m aiming to change GP, or surgery or go private to be honest. The fact that she believed I am lupus negative because of that test result alone bothers me

[KayHimm in reply to Cutiecutie]

If she really thinks that the lupus anticoagulant test is diagnostic of lupus, she shouldn’t be practicing medicine. Seriously, that is basic. I think a medical student would learn that as soon as they take their clinical courses. After that, they would hear discussions about autoimmune testing over and over in residency. This is crazy.

The easiest thing to do is to get a new GP and go over everything with them.

Please keep us posted. And good luck with all of this.

K

[Cutiecutie]

Yes, that’s why I had to do online consultation again because after my results came back, I never heard from her again. Because it was straightforward and I was lupus negative according to her. What’s next then, did she really expect I’ll just live with these symptoms. It’s ridiculous everytime I remember the conversation- « your concern was lupus so we tested you for lupus. » Now, even if I don’t have lupus, I will - because she just stresses me out. Lol

[AimeeA]

Lupus is a complex disease with many different ways of manifesting itself in individuals, and often crosses over with other autoimmune and other medical conditions, and is hard to distinguish between them.

So doctors will order lots of different blood tests to try to pinpoint exactly what is going on with you, what your personal picture is, and whether you have lupus or some other similar auto immune condition.

So it is normal for them to walk thru a bunch of different tests until they are confident they have diagnosed you correctly, and also to know what kind of treatment plan they need to follow with you.

[Cutiecutie in reply to AimeeA]

I understand but To clarify, at my worst, She didn’t order Bunch of different tests, she only ordered clotting (Borderline) and lupus anticoagulant test (negative) as for her, these are the tests for lupus as it detects antibodies. With those blood results, she concluded that I don’t have lupus or any diseases worth her time or Further investigations. When I accessed the blood results online, it notes no further actions required. I never heard back from her for weeks until I did an online consultation again because I still feel rubbish and experiencing symptoms. For a GP ordering these and never got back to me and my symptoms assuming I am straightforward lupus negative therefore there’s nothing wrong with me. She’s also aware that getting a blood test from a surgery takes More effort, risks and scheduling nowadays so doing just clotting and lupus anticoagulant for my « lupus » symptôms, for me isn’t enough. Now, I have to wait for her call so I could go to the surgery again to repeat the process of having my bloods obtained and tested

[Cutiecutie]

I also registered with a private GP as I lost confidence with the blood tests ordered for me and the GP’s actions thereafter/ negligence towards my autoimmune response symptoms.

[Cutiecutie]

Hello guys, just to update, I tried private GP because I’m not getting anywhere with my local surgery- finally got a Rheumatologist referral

[JojoMcbride]

Hi, I’m new to this site but not Lupus symptoms. I had a hysterectomy 6 years ago , it was extremely difficult and I was very ill. Anyway , long story short, I started having major sweats, flu like symptoms, got pneumonia. Admitted to hospital crp was 174, home after two weeks. I tried to say , there was something else wrong with me but they wouldn’t listen . Two weeks later , back at a&e, pneumonia again . This time though , I had horrendous joint pain , I couldn’t bend my fingers, walk to the toilet . The pain was excruciating. Admitted to hospital again . Put on iv antibiotics, but my body wouldn’t respond to them , they said they had given me the strongest you can get and still my inflammatory markers wouldn’t come down . I was in hospital for 6 weeks. Came out in a full body rash . But I put it down to an allergy . Finallly they started mentioning lupus. I had never heard of it. They did a lupus blood test and it came back as inconclusive ( 5) they said, but I had the double stranded DNA, which is common in lupus . Saw by rhumetology a couple of weeks later and they said, I basically had three out of the four symptoms for lupus diagnosis. So put my condition, under autoimmune connective tissue disease probable lupus. Put me on methotrexate. ( horrible stuff) . Six years later I am still waiting on a diagnosis. I have bad flares , had to take a carer break . Cannot get out of bed at times . Have been hospitalised with pneumonia two more times, and have continuous kidney infections. I do get rashes, but then , I have to wait on dermatology. I’ve been waiting two and a half years to go back to rhumetology. It’s so frustrating. I get your frustration and being palmed of . Some days I think , is this in my head ? My gp is great though and is disgusted on my behalf , my markets are always high, and my bloods all over the place . I hope you get a better outcome that I have. I’m in Northern Ireland, so don’t know if that makes a difference . Sorry for offloading, I just haven’t met anyone similar to myself.

[KayHimm in reply to JojoMcbride]

JoJo - You have had a lot of serious health issues, and it is clear you have suffered. The fact that they cannot diagnosis you with lupus does not all all mean they do not think you are not sick with systemic autoimmune disease. In fact, you were put on strong medication with serious side effects because your doctors clearly thought your symptoms warranted them.

Many of us do not meet full lupus classification. That does not mean we don’t have lupus-like disease, over-lap disease or serious symptoms. The immune system is complicated. People’s expression of autoimmune disease is highly variable. It sounds to me like your rheumatologist diagnosed you with definite autoimmune disease with lupus features but did not say specifically lupus because you do not have enough symptoms. That is usually a good sign.

I am concerned that you have not seen a rheumatologist in two and a half years. Can you discuss this with your GP? Something seems terribly wrong.

Best of luck.

K