Routine Tests

[GLRocc]

As patients in some areas of UK are not been seen regularly in NHS clinics any more, and routine blood and urine tests being left to the patient and the GP to sort out, it would be useful to know exactly which blood tests and urine tests (and eye tests) should be done every 6 to 12 months for Lupus patients. Does anyone know where this information can be found?

[PMRpro]

I suspect there is no single simple answer - other than the usual panels of tests for monitoring various systems. This usually comprises:

urea and electrolytes (U&Es), renal function, liver function (LFTs), thyroid function, lipids, diabetes panel and Full Blood Count (FBC, all about blood cells) as explained in a bit more detail here:

indushealthplus.com/basic-h...

But really, it depends on what YOUR lupus affects, some of that is covered in that list but there will be some less common tests depending on you. So you need to know a bit about that before asking the GP to order the tests - and there will possibly be some that only a specialist can order.

Eye tests - that depends on the medications you are on, corticosteroids need occular pressure tests and cataract - the local CUES optician will tell you about those I imagine since they have taken over a lot from hospitals:

primaryeyecare.co.uk/servic...

This tells you about hydroxychloroquine:

mft.nhs.uk/app/uploads/site...

This is the latest iteration of the EULAR recommendations for diagnosis and management of SLE, from which you can probably get some info if you plough though it carefull.

ard.bmj.com/content/83/1/15

Does this help?

[GLRocc in reply to PMRpro]

Many thanks - very helpful

[marypw]

Urine tests for protein and blood are the ones that don’t seem to get done now we don’t have face to face appointments any more.

I also persuaded my GP to get ANA and dsDNA plus complement levels done as they are indicative for me.

CRP, ESR and different antibodies might be appropriate for other people.

At least if GPs get the tests done I can see them on the NHS app, whereas the ones ordered by hospital consultants just go into a black hole!

[Jrob14]

have you tried the lupus UK website for this info, tho surely its best practise to remain under consultant for your condition? I’m insisting my husband remains under rheumatologist gastrologist and physician for regular appts/scans/bloods. Have a look at NICE guidelines too good luck

[F9927]

Hi GLRocc,

Many hospitals have too many patients now and as a result GP’s are being asked to do more and more of the care for patients they previously would not have looked after:

Here is some information on bloods, urine and eye tests:

For lupus patients, the frequency and types of tests can vary depending on the severity of the disease, organ involvement, and treatment plan. However, there are general guidelines for monitoring lupus that healthcare professionals typically follow. Here’s an overview of the tests that are often recommended:

Routine Blood Tests

1. Full Blood Count (FBC): To monitor for anaemia, low white blood cells, or low platelets, which can be caused by lupus or its treatments.

2. Erythrocyte Sedimentation Rate (ESR): To measure inflammation levels.

3. C-Reactive Protein (CRP): To differentiate between active inflammation and infection.

4. Urea and Electrolytes (U&E): To check kidney function.

5. Liver Function Tests (LFTs): To monitor for drug side effects or liver involvement.

6. Creatinine and Estimated Glomerular Filtration Rate (eGFR): To assess kidney health.

7. Anti-DsDNA Antibodies: To monitor disease activity.

8. Complement Levels (C3 and C4): Low levels may indicate active disease.

9. Lipid Profile: To monitor cardiovascular risk, especially if on steroids.

10. Glucose: To check for steroid-induced diabetes if applicable.

Urine Tests

1. Urine Dipstick: To screen for protein, blood, or infection.

2. Urine Protein:Creatinine Ratio (PCR) or Albumin:Creatinine Ratio (ACR): To detect and quantify proteinuria, a sign of kidney involvement.

3. Urinalysis and Microscopy: To check for red blood cells, white blood cells, or casts.

Eye Tests

1. Ophthalmology Screening:

• If on hydroxychloroquine, an annual eye exam is recommended after 5 years of treatment or sooner in high-risk patients (e.g., those with kidney impairment or high doses). It is now recommended this is done at a specialist centre as well as optician.

• If on steroids, regular checks for cataracts and glaucoma are important.

Frequency

• Blood and urine tests are often recommended every 6-12 months in stable patients. However, for those with active disease or on higher-risk medications (e.g., immunosuppressants), tests may need to be done more frequently, such as every 3-6 months.

• Eye tests for those on hydroxychloroquine typically follow annual screening guidelines.

Where to Find Reliable Information

• British Society for Rheumatology (BSR) Guidelines: The BSR provides guidance on lupus management, including monitoring recommendations.

• Lupus UK: Their website often includes patient-friendly resources and information.

• NICE Guidelines: The National Institute for Health and Care Excellence provides evidence-based guidelines for lupus and related conditions.

Hope this helps

[GLRocc in reply to F9927]

Thank you that's very helpful

[StriatedCaracara]

My diagnosis is UCTD, so maybe the situation may be different.

I have a feeling that what is available might depend on structures in place to control what is ordered, how rheumatology care is delivered to each of us, and how much GPs can work alongside our rheumatologist.

I feel my GP surgery want to help as much as they can. My GP now prescribes my Hydroxychloroquine and as a result they will do repeat full blood count, kidney and liver function every six months as they say they have a responsibility to check for any side effects.

They will not repeat specific immunological tests, and even won't do new ones, saying they are not in a position to interupt the results so can't order them

(I requested ANA test in 2021 and then ENA screen and anti-dsDNA were done.

ANA strong positive, other results negative - never been retested on NHS.

I can no longer request this level of testing at GP surgery. Sometimes they say once test is negative they can't repeat. Other times, that they have not managed to get testing for other patients. So somebody else is restricting what they can order)

I think when a patient has lupus symptoms that doctors are concerned about, but have a UCTD diagnosis, that they might try and do the same tests - where systems and controls allow.

It would be good to see some guidelines for cases where systemic autoimmune connective tissue disorder is undefined. The guidelines issued above are for Lupus patients. In some cases it is more obvious which condition a person is alligning too

[StriatedCaracara in reply to StriatedCaracara]

Some people using this forum have a diagnosis other than Lupus, I have a UCTD diagnosis, others MCTD, others Overlap. For people with MCTD it is necessary that regular tests are done for Pulmonary Hypertension.

This is a page by Dr Donald Thomas that helped me understand uses of terms UCTD, MCTD and Overlap.

lupusencyclopedia.com/uctd/

On HealthUnlocked there are other communities some of us belong to. There is not a specialist community for UCTD.

There is not a specialist community for MCTD.

I have noticed that on this forum some have a lupus diagnosis, but others don't yet have a diagnosis, or may have a UCTD diagnosis or a MCTD diagnosis. Sometimes people move between diagnoses.

Simple question:

Does a spreadsheet exist for testing against each connective tissue diagnosis?

It would be a simple thing to refer to and helps to keep the wider picture of tests and investigations in view where conditions may progress. It is sometimes difficult to access and to amalgamate information. The more clued up we are as patients the more we can ensure not just ourselves, but others get timely diagnosis with a family of conditions that are interconnected yet the basic science of disease progression might not yet be fully understood.

[KayHimm in reply to StriatedCaracara]

SC -

I think the best way to look at it is the consultants look for a constellation of symptoms. There are some visual diagrams that are helpful for patients. But the rest has to be left to the professionals.

The problem with follow up in the UK and other countries is a shortage of doctors, not ignorance of follow up recommendations.

My view is until they solve this problem, the rest is secondary.

Kay

[StriatedCaracara in reply to KayHimm]

Does not that make it even more neccesary for patients to be more clued up KH?

Thought post very good but would be helpful to draw out so applies to more on the forum, some of whom might be in tricky situations with no help currently.

I was not suggesting ignorance by doctors (far from it), just sharing of knowledge.

The way I see it, it is more of an 'information management issue' than a professional's knowledge isssue.

Having been through a bumpy journey to start with I realise that diagnosis can be delayed.

There are also substantial inequalities in healthcare provision in lots of places for various reasons ,that make it even more important for people to know the standards and be advocats for themselves and others.

At the end of the day maybe people are different and different strategies and mindsets might help different people. Maybe we see things from different standpoints a bit 🙂

[KayHimm in reply to StriatedCaracara]

I am not convinced of the solutions. Until our countries solve the doctor shortage everything else becomes almost irrelevant.

Right now the UK has four to five less the number of neurologists to treat patients than France and the US. I don’t know about rheumatology but that specialty is experiencing a shortage world-wide due to the aging populations.

Patients don’t need help diagnosing rheumatologic conditions. They need access to rheumatologists who have three additional years of training to be able to do so.

Just my opinion.

[StriatedCaracara in reply to KayHimm]

I think some rheumatologists like Dr Donald Thomas also believe patients should know about testing etc, My opinion is both doctors and good resouces for patients are crucial..

I have learnt so much from The Lupus Encyclopedia (I got a second-hand copy on Amazon) and also the online information he provides.

I am grateful for him communicating so much, particularly his helpful tips I think this is an example of very good practice and helps patient relate to their situatuon better and maybe even interact more easily when they have an appointment.

He has taught me lots and my life and insight have improved through having this imformation.

Of course patients can't diagnose but this is more about knowing the pathways to diagnosis through having the right tests.

We are not only dealing with rheumatologists but also GPs and others and it helos when we communicate with them if we understand issues a bit.

That is what I have found. It has not hinderd me at all.

Other things I do think are relevant. This is a multifactor issue. People can't change things they have no control over.

Patients don't have control over health provision (unless they have the ability to go private or travel) but they do have some control over the knowledge they acquire.

Some may reach the position where they have optimised the care they get, but for those here who haven't knowledge might crucial to move forward

[KayHimm in reply to StriatedCaracara]

Many find the Lupus Encyclopedia invaluable. It is written for patients. The problem is that when it comes to many problems patients lack perspective. Understanding lab values that are discussed with their doctors is great. Looking at labs and thinking you can interpret them is a fool’s errand. I am nearly always wrong. About everything. Why? Like everyone else here, I lack perspective.

Informed patients are a positive thing. Patients who read Dr. Google and think they know something are nightmares for doctors. They know we do it. Why not? They want us to tell them what we read so that they can confirm or explain.

So no, I don’t see how learning of guidelines for treatment of patients with a given diagnosis would be helpful. The best question would be how am I to be monitored until the NHS produces adequate number of rheumatologists, GPs and nephrologists that a lupus patient needs?

[StriatedCaracara in reply to KayHimm]

In these respects my opinion is no different to yours.

With a science background though I have found Google good..but there is rubbish out there which I avoid.

People are different . Some are more critical of what they read, and it is not just scientists. I just give having a science background as one example

I have had good discussions based on what I have read and hopefully have not been a nughtmare.

The main thing though is material like the The Lupus Encyclopedia is excellent, written for patients and just the right level so nobody then needs to use Google.🙂

[Jerg]

it is the same everywhere these days I have the same problem. Eye test should be once a year blood an urine every appointment however nothing has been done for some years now unfortunately

[soul22]

Are they thats poor it's rheumatology job to do those special tests Mine still does and he looks on my chart to see what's been done by oncology very helpful they actually now communicate

[dg70]

I am with a lupus centre of excellence Rheumatology department in Bath. I get an appointment every six months alternating specialist nurse and consultant. I get urine tested every time I go and full bloods once a year unless there is an issue then it may be tested at the six month stage. Although saying this they are under strain and my appointments now seem to be every 8 months. Eye tests are done if needed as in if there is a problem. If not its after 5 years of hydroxy. I go to a private eye clinic every year as I feel waiting 5 years for my first test on the nhs is too long and eyesight too precious to mess with. Not sure if this is any help?

[GLRocc]

I know about Bath but it is out of area for me. Thank you

[FredaN]

My first three appointments were 3 months apart, the last 6 months. They said it would be 6 months from last appointment. She said initially 1 year, but that I "seem anxious", so she'd make it 6 months 🙄 Not so much anxious, as frustrated by the lack of improvement in my symptoms and their inaction. I think it will be once a year after the next one and I'm very worried, because the only symptom they've got under control is night sweats! I'm under various different specialities, but they all feel like they're doing the bare minimum (even just humouring me, on some occasions) and act like the root cause is not their responsibility. Unfortunately, having mental health diagnoses, they can always fall back on that as a "reason" for the remaining symptoms.

I asked my GP if she could run some Lupus tests when I was having a bad spell in between appointments and she actually showed the screen to me, where the option is greyed out. So my GP can't monitor the specific tests, just the usual full blood count, renal & liver function, inflammatory markers etc. My husband is freaking out about this, as I think he's already on high alert that something bad will happen and he might miss it.

I'm not entirely sure what blood tests Rheumatology are even running, as like someone else said, I can see GP blood test results, but no access to hospital ones. I think many of us are worried about the lack of appointments & investigations when there is a possibly they could do many things to make our lives more bearable or prevent it getting worse. I wish they'd just be honest if they're overwhelmed with patients, but the consultants seem to try so hard to be reassuring, it just feels patronising.

[GLRocc in reply to FredaN]

If it's any help to you apparently, you can ask to be referred to another hospital (even if it's out of your area), or to see a consultant privately - just one consulation might help