Lupus blood test, dd

[teafordds]

I’ve posted before about dd, the doctor had diagnosed Cfs, but I thought her symptoms seemed more like lupus, including malar rash, arthritis, tiredness, hair loss, rashes, headaches, body pains amongst other things. It’s been really tough.

Fast forward a wee bit, we saw a rheumatologist yesterday who thinks it could be lupus, she took photos of dds face, urine test and got sent for bloods.

I’ve just received a phonecall saying dds bloods were ‘insufficient’ and they need repeated. I asked if this was for the ANA test, but she said no, it was a lupus test and they needed 4 full vials and it was likely they hadn’t collected enough from dd.

Is anyone clued up on this, and knows what she might mean? I should have asked more but I was rather thrown tbh, I thought the ana was one of the only tests and even then it wasn’t definitive - what could this other test be?
Thanks!

Agh I meant to post in health! Sorry!

Anyone?

Sounds like they didn’t collect enough samples for all the tests they need doing

These laboratory tests can include:

• Anti-nuclear antibody tests (ANA) - the ANA test is positive in almost all patients with lupus. However, it may be positive in many other illnesses, and therefore cannot be used to diagnose lupus on its own. If it is negative the diagnosis of lupus is far less likely.

• Anti-double-stranded DNA antibodies (dsDNA) - if positive, a diagnosis of lupus is very likely. An increase in dsDNA levels can be a signal of a flare.

• Extractable nuclear antigen antibodies (anti-ENA) - this is a group of tests, some of which can be indicators of lupus which can be linked to certain lupus symptoms.

• Serum Complement (C3 and C4) - a fall below normal levels often indicates a flare, as both C3 and C4 proteins are "used up" in active lupus.

• Erythrocyte Sedimentation Rate (ESR) - this test is raised by inflammation. It is not specific to lupus and can go up when you have various illnesses such as colds or flu.

• Full Blood Count (FBC) - this counts the number of cells in a sample of blood. The white blood cells, red blood cells and/or platelets can go down in lupus.

Oh thank you so much @whatsthisbear - your post has been more informative than my hours spent on google!
I really appreciate you taking the time to explain that to me - it does make a lot more sense that what was going on in my head. Hopefully we can get some answers now, this is scary.

A worrying time for you. Hopefully once you have all the results they will be able to help her with regards to treatment.

Probably for lupus anticoagulant/ anti cardiolipin tests( it needs 4 tubes)

Thank you @wandastartup - that’s probably what she meant as she mentioned the 4 tubes - they took about 7 though so they must have been testing for other things too. Do you know how long these tests take to come back?

Some the same day but others are not run very often so 2-3 weeks. There will have been about 7 tubes as each type of test eg blood count, immunology, biochemistry each need a separate tube plus 4 for the specialised lupus anticoagulant tests.

Thanks so much for explaining, I feel really dense!
We’re meant to go this afternoon for a repeat but dd is too ill so I’ve had to cancel and the receptionist couldn’t fit us in for another 2 weeks, which is frustrating but can’t be helped.
Really hope we get some answers soon, lupus would honestly explain everything, I do have a sinking feeling that’s what it is.

Unless she’s vomiting I would try to get them today the tests won’t make her worse. Hopefully they’ll give you some answers at least. There are really good treatments now if it is that and if not you have excluded it.

Not dense at all by the way. It’s easy to explain something that is your job!

Thanks again, I really do appreciate your help. Dds floored with a migraine she throws up if she moves so although it’s not a sickness bug I really couldn’t take her.

The consultant actually phoned me saying 2 weeks is too long so we’re booked in next week, so that’s good. She said dd had some protein in her urine which could just be an infection but they want us to do 24hr collection.

Good that it’s next week. Shout if you have any other questions!

When I get my bloods checked for a condition in the Lupus family I have
FBC - full blood count
U&Es - urea and electrolytes
ESR-erythrocytes sedimentation rate
ANA- antinuclear antibody
CRP- C reactive protein
Rheumatoid factor
Liver- a range of liver parameters including bile acids, GGT and ALT.
Anti Ro/Anti Lo
Anti Double stranded DNA

Usually about 7-9 tubes of blood. They always advise me to sit for a few minutes as I am one of their biggest draws.