Blood Tests 🩸

[ScottishGirlGla]

Has anyone got, or can direct me to a complete list of bloods to be checked for Lupus, so when I next see my GP I can check all have been covered?

[Oshgosh]

Hi,sorry,have no knowledge of blood test lists.

After emergency admission a year ago,I was diagnosed with nsip,a Lung condition.

This year I’ve been diagnosed with lupus,they said they don’t know whether or not lupus has caused the lung condition.

Have tried an immunosuppressant,it affected my liver,so am now waiting to go on another one in November.

The firs half of this year was punctuated by blood tests,the consultant told me that they have access to more blood tests than the GP.

Thinking back,I think I have had symptoms of lupus for at least 20 years,they have been treated on a symptom by symptom basis,so it’s taken a long time to get to this point.

I can’t underst why your GP is dealing with this. From yourprevious post,he seems reluctant to do so.

I Really hope someone can give you more information than me

[ScottishGirlGla in reply to Oshgosh]

I'm hoping that the rheumatologist can treat my symptoms as a whole rather than individual things which GPs seem to focus on. Looking back my symptoms have been progressing over long period of time too

[Oshgosh in reply to ScottishGirlGla]

Sometimes it’s a shock to realise how long ng things have been going on.

When I was in hospital I saw a rheumatologist,he asked me loads of questions.i couldn’t believe how much he knew about my symptoms. As time goes on I understand why.

My symptoms are not all the same as yours.lupus is such a sneaky disease.

[eekt]

Had a peek at your other posts.

ANCA is a test for vasculitis, though just because it's negative doesn't mean it's not. Same with a biopsy (you wrote a CT had shown inflamed sinuses). It needs to be an expert in vasculitis to diagnosis, not a common-or-garden rheumatologist...hard to find in Scotland. One particular kind of vasculitis affects the nose/sinuses: GPA.

There is a NICE-accredited guideline for lupus (SLE)*, aimed at rheumys so your GP won't know of it. Table 5 lists the clinical criteria or SLE - at least four are needed - and Table 6 lists all the tests for initial assessment. Inflammatory markers only indicate active inflammation and don't aid diagnosis during remission.

GP's are taught little about autoimmunity, so if your current one won't refer, can you see a different, more enlightened one?

All the best xxx

*academic.oup.com/rheumatolo...

[ScottishGirlGla in reply to eekt]

Thank you x

[Queenmab in reply to eekt]

That is extremely helpful. I will look up NICE. I'm a physio so well aquatinted with them. I've battled for years with multiple seemingly unrelated illnesses and realising it was probably lupus was a huge relief. But can't get medical confirmation. One look at my bloods and they become deaf to my agony. No explanation other than fibromyalgia and painkillers. Managing my light and heat sensitivity does help. I'm known for my fashionable hats and celebrity sunglasses in Scotland. Apparently the UV index higher here. Thin ozone. Gabepentin cocodomol, blood thinner for atrial fibrillation, and BP meds. Independence means everything. Take heart and ask questions.

[heatherevans28]

Hi,

There is a full list on lupus uk of the criteria for diagnosis and the key blood tests are ANA and DS-DNA but they aren’t fool proof. They have to be accompanied by symptoms and you need to be medically shown to meet 4 criteria.

It’s worth noting that GP can’t always run all the required blood tests. I note your name and assume your in scotland. I’m in Glasgow and my GP can do the key inflammation tests (ESR and ANA) but not always the specialist ones (DS-DNA, Complements 3 & 4, Anti-Ro and Anti-La). There are also a number of other tests to be carried out dependant on your specific symptoms. Your best bet is to ask for a referral to rheumatology and then they will run all the required tests. You’ll then know that everything has been checked.

Lupus is a rare and often complex condition, so GPs are not expected to have been trained on it in any great depth. Often they will have only met one or two patients during their career with the condition (if you are lucky). Their job is largely to refer you onto the appropriate specialists if they suspect an autoimmune condition, and then if a diagnosis is made, they will be instructed on which medications to prescribe etc.

Best of luck

Heather

[ScottishGirlGla in reply to heatherevans28]

The fact is I am symptomatic with chest pain, bony and muscle aches ( had recent hip replacement), hair loss ( i have a lot of thick hair so it doesn't show as much but i know the amount losing is excessive), nasal ulcers, headaches, asthma, lethargy, frequent rashes and 3 incidences of vasculitic type rash, recent malar rash.

Bloods are mildly +ve ANA and anticardiolipin antibody, ESR just always borderline ie. just over but not higher.

Referred to rheumatology at start of month, there is a 20 week wait

[heatherevans28 in reply to ScottishGirlGla]

I’m sorry to hear that, and I really hope you get some answers when your referral does eventually come through.

If you are struggling with rashes as part of your symptoms it is also worth asking for a dermatology referral. I got a referral to dermatology only a few months ago for some rashes and the wait wasn’t long so they might be able to see you sooner.

All the best,

Heather

[ScottishGirlGla in reply to heatherevans28]

Hi Heather,

I had rash recently just recently that settled sown eventually with cream from docs but within about 10 days after its clear, the itch has come back but not the rash.

I had malar rash at that time too which you can still see but much less than was 3 weeks ago.

The last vasculitic type rash was July totally unhelpfully when in hols in Australia. ( not their summer at that time so extreme heat/sun not so much an issue)

I saw a dermatologist in July 2015 but the issue is with that if you aren't presenting with it at time you see them they send you away which is totally unhelpful. Its just really frustrating but i've waited this long we will see what occurs

[ScottishGirlGla]

Thank you x

[ScottishGirlGla]

My usual GPs don't put all of it together. But the one I saw most recently has at least referred me to Rheumatology so thats a start

[ScottishGirlGla]

thank you

[ScottishGirlGla]

thank you

[KayHimm]

You might want to ask if your GP has done a CBC and an ANA test. They run many tests, though, depending on symptoms.

Check the information section on the Lupus UK site. There is material that covers common testing, I think.

K

[ScottishGirlGla in reply to KayHimm]

The ANA was mildly +ve and CBC was fine apparently, inflammatory markers borderline

[KayHimm in reply to ScottishGirlGla]

Have you discussed the results with your doctor? Did they mention any other tests?

[ScottishGirlGla in reply to KayHimm]

At the start of August when I came back from holidays after having another vasculitic rash episode the bloods i had then were as above. He said he wanted to do them again in 6 months to see if change. Apparently my ANA which initially 5 years ago when had 1st vasculitic rash and was told negative has always been weakly +ve. The anticardiolipin antibody was detected in 2016 after seeing rheumatologist at that time. Also had CT of the sinuses at that time which showed inflammation but she didn't want to confirm disease at that time. Fast forward 3 years on aspirin, further vasculitic rash on legs, potential malar rash on face, a hip replacement, ongoing lethargy, feeling constantly run down, worsening headaches and other rashes and its frustrating.

When had malar type rash at start of August they said wouldn't do bloods as there was too little time since my last lot of bloods. I didn't argue then as she did rheumatology referral. I just want to have a full list of all the bloods that should be checked to make sure when i next see them that everything being covered