Advice needed re what private blood tests I should opt for to try to prove to GP that my symptoms are probably lupus & need investigating?

[Spicer21]

Hi everyone,

I feel very ill and suspect that I have lupus. Many of my symptoms fit, but I know that I will face an uphill battle to get my GP to refer me to a rheumatologist on the NHS (part of the problem is that years ago I was diagnosed as having Fibromyalgia and after that I've found that doctors don't take my symptoms seriously).

Recently, I've had painful and bad gastric episodes. I have photosensitive skin and come out in rashes on my hands in the summer months (purply/red itchy lumps that are like chilblains - but aren't chilblains - which feature on my knuckles and other finger joints and on the sides of my fingers and thumbs too). Recently I've had livedo reticularis on my right knee, coupled with severe sudden muscle pain in my outer right thigh, which has made me bedridden. In the past I have come out in itchy rashes all over my body for no apparent reason. I have two other auto-immune diseases, i.e. hypothyroidism and ocular myasthenia gravis and suffer with dry eyes and just very recently a dry mouth at night. I flush red/deep pink across my cheeks and nose on daily basis; the flushing is hot (but this is not due to the menopause as I am 9 years past that).

I am on levothyroxine and so I therefore also wonder whether my recent symptoms are due to 'drug induced lupus' or that I've had lupus all along and the levothyroxine is exacerbating my symptoms.

Anyway, to get to the point, my question is what blood tests do you think I should I opt for privately which, if they were to be positive, might persuade my GP that I need further testing and/or a referral to a rheumatologist?

I've done some research and I'm thinking of getting the following done out of the many that seem to be used to detect lupus:

ANA

Anti-double stranded DNA antibodies

Creatine Kinase (as I suspect myositis)

and possibly:

Complement 3 (C3)

and, if I can find somewhere that'll do them for me - and I can afford them - the following tests too:

Anti-Sm

ENA panel

My GP (a locum) did do a Lupus Anticoagulant blood test, which came back normal, but I believe that that particular test might be 'time sensitive' and there was a delay of 9 hours between my blood being taken and my blood being tested. I've also had ESR, FBC and CRP blood tests done and they were ok too. (My GP only sanctioned these tests because he thought that there was a remote possibility that I was having clotting problems, which might have been causing my recent thigh pain...but he did put a query of "??? lupus" on the blood test forms.)

Thanks in advance for your thoughts and advice; they will be gratefully received.

(Sorry this is a bit of a long 'essay'.)

Fielder

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

I am sorry to read about your difficulties and that you are feeling so ill. As you have several autoimmune diseases, I am perplexed why your GP refuses to send you to a rheumatologist.

Myadvice would be first, to ask for a referral to see a rheumatologist who specialises in systemic lupus erythematosus. My recommendations would be the following:

1. Dr David D'Cruz, the Director of the Lupus Clinic at St Thomas' Hospital, London. St Thomas' is a centre of excellence in research and clinical treatments.

2. If you have private insurance, I would recommend Prof. Graham RV Hughes at the London Bridge Hospital, which has its own Lupus Clinic. Dr Hughes was the Head of the Lupus Clinic at St Thomas' and has taught most, if not all, lupus specialists in the UK. He has an international reputation. Dr D'Cruz is also at the London Bridge Hospital.

I cannot recommend Prof Hughes enough: londonlupuscentre.co.uk/

The Lupus Anti-coagulant test is confusing for patients and doctors. It is NOT a test for lupus, but a complicated clotting test for the antiphospholipid antibody (Hughes) syndrome. This is named after Dr Graham RV Hughes. Hughes Syndrome can be primary, that is, by itself. It can also be secondary and many patients with SLE also have Hughes syndrome.

I do not think getting private blood tests to be useful. This is because lupus (SLE) is diagnosed clinically. There is no one blood test. Unless a patient has a positive ANA, a malar rash and lupus nephritis (which is only a proportion of patients), diagnosis can take months or years. A diagnosis should not be made quickly in case it is wrong. Therefore, lupus specialists often employ a "watch and wait" and see whether the patient develops symptoms over time. Therefore, even if you see a lupus specialists

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[Spicer21 in reply to lupus-support1]

Hi Ros,

Thanks for your reply and warm welcome.

I heard that Prof Hughes isn't seeing any more new patients, but I'll enquire at the London Bridge Hospital to double check as I'm thinking of going private at least to start off with. (I don't have health insurance but I do have some 'rainy day' savings which are limited but might help me get a diagnosis.)

I've had the Lupus Anti-coagulant test which didn't show up with anything wrong. (I don't know whether or not the GP who ordered it thought that it would diagnose SLE; I suspect that him ordering it was more to do with combining it with other tests, e.g. d-dimer, to make sure that he was right and DVT isn't causing my current thigh pain. Although he did put "??? lupus" on the blood test request forms.)

I'll join the lupus message board as you suggest; I'm grateful to you for telling me about it and inviting me to join your forum

Kind wishes,

Fielder

[Spicer21 in reply to lupus-support1]

I've gone through the registration process for your forum and am now waiting to be accepted

[lupus-support1 Administrator in reply to Spicer21]

You should have received a message from me. If you cannot see Prof. Hughes, then you can see Dr D'Cruz at the London Bridge and then transfer to the NHS! Many patients have done this so that the NHS pays for the tests. Dr Hughes and Dr D'Cruz understand that most of us are not wealthy and that the NHS cannot cope with the number of patients.

Blood tests can and do change and therefore blood tests should be taken at least once every 3 months, when you see your consultant. However, at St Thomas' there are so many patients, that your next appointment can be far longer.

Blood tests alone are insufficient. It is the clinical diagnosis that is important. Dr D'Cruz was taught by Prof. Hughes and they both are at The London Bridge Hospital and they will present the patient ie "you" and have a case discussion. Therefore, you will be in good hands.

If you need to talk, you can email me directly: roz [at] [lupus-support] [dot] [org] [dot] [uk] or at the LuPUS Message Board.

There is a great deal of information via the private forums and you can also request information and I will do my best.

LUpus Patients Understanding & Support (LUPUS) specialises in psychological support.

With good wishes,

Ros

[Spicer21 in reply to lupus-support1]

Thanks, Ros. I greatly appreciate all the information you've given me.

I'm having trouble getting on to the message board; it says that I'm awaiting approval.

[lupus-support1 Administrator in reply to Spicer21]

I am really sorry. I thought I had registered you! It should be OK now. If not, you can always email me here: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes,

Ros

[Spicer21 in reply to lupus-support1]

I can log in now - thank you, Ros