Positive anti-dsDNA but rheumatology rejected my referral?

[rosael56]

I saw my GP a few weeks back and had bloods done. They came back as:

ANA 1:80

ENA positive

Anti-dsDNA 36.5 (>35)

My GP mentioned Lupus and referred me to rheumatology.

Well I just saw my GP again today and he said rheumatology have rejected my referral, saying that my results are only "mildly positive", and without other obvious symptoms they don't wish to see me.

I'm upset and surprised really. I have awful chronic fatigue, flare ups of joint pain in my wrists, diagnosed dysautonomia (POTS), and a myriad of other symptoms (bowel & bladder issues, hair loss, flu like symptoms etc). I also have autoimmune hypothyroidism. But I don't have the very specific Lupus symptoms of rash, fevers, visible joint swelling.

My GP has suggested next time my wrist pain flares up, I get emergency bloods done to see if my results are higher. He seemed quite frustrated that rheumatology wouldn't see me.

Is this normal? I was under the impression a positive dsDNA is not seen in healthy people and I must have something Autoimmune. Does this mean I don't have anything wrong? Or is this a case of, rheumatology don't think my bloods are bad enough to be seen yet?

Any advice appreciated!

[StriatedCaracara]

In the past I don't think they focused on bloods.

Instead they focused on having more than 4 of 11 symptoms. The list is found across lupus websites still.

Some people were diagnosed as having seronegative lupus.

Without actually seeing you how can they examine you and know what is wrong.

Some people have had symptoms progress following covid infection. If Vitamin D is low things can be worse. Has your GP checked this?

Another fustrating thing about the blood tests is that different methods are used in different places. Some are more reliable than others and cut off and ranges can vary.

Maybe things also depend on age, where we live and if local hospital is trting to reduce their caseload.

My first referral failed. I wanted to trial hydroxychloroquine to see if helped symptoms. This seems a more pragmatic approach. I bet your GP is fuming.

[StriatedCaracara in reply to StriatedCaracara]

If they are using 2019 Classification criteria intended for research only. Link below is to the table. There are two columns and only 0eft and right highest scoring items together, is required.

In left hand symptom column only lupus nepritis scores 10, so if score anything else like 6, then positive blood results on right side needed. But it seems that things have got even more strict

ncbi.nlm.nih.gov/core/lw/2....

[rosael56 in reply to StriatedCaracara]

Yes my GP was very frustrated. He said it's all about jumping through hoops. He's from India and he said in India I'd definitely be seen by rheumatology for these bloods. It does seem the NHS is very strict!

My vitamin D is monitored regularly yes, and I take supplements so it's ok. Same goes for iron etc. As I have hypothyroidism I'm careful to keep my vitamin levels good.

That classification is interesting. You're right, how can Rheumatology know if I have those criteria without seeing me? It's crazy. Thanks for your input!

[StriatedCaracara in reply to rosael56]

Interesting that if a presenting patient was in India then they would get seen by Rheumatology

Speaks volumes of our mangled criteria, pathways and priorities here in the UK.

Glad some doctors are open about it. The more rapidly people speak up, the quicker things would change.

[Star13]

I’m sorry to say this is more to do with the failing NHS health system than your failing health! You are right all those blood test results would normally be taken as a positive of Lupus but it’s like people who get positive APS antibody results and they say sorry they are not high enough for a diagnosis even though there are thousands of patients who have awful disease symptoms who are seronegative and some of those have gone on to have clots and even strokes.

So it’s a false system that denies people like you treatment especially as most will get worse and end up costing more to treat when they eventually do get worse and have to be seen.

My advice for what it’s worth would be to save some pennies and see a private specialist, preferably one that also has an NHS clinic you can swap over to eventually once you have a diagnosis and are on some treatment like hydroxy.

[rosael56 in reply to Star13]

Thank you! My GP is from India and he said that back in India I would be seen by rheumatology for these bloods/symptoms. He was very frustrated for me. Thankfully he's a wonderful GP who is very supportive, and his plan to get bloods as soon as I have my next flare up seems like a good one. I only hope my antibody levels will be higher then!

I have considered going private though, that will be my next step if no luck with NHS.

[MADDIE73]

I fully understand for 10 year now my GP has told me I have all the signs of Lupus but I have not got Lupus. Come on I either have or haven't. It's only now as my health gas deterated again they are going to do the test again. Don't give up and keep pushing them for the test x

[rosael56 in reply to MADDIE73]

10 years!? Gosh that's a long time. How frustrating for you. I hope the tests come back positive for you this time. Thank you, I will keep pushing.

[bluebell99]

According to NHS guidelines, you have every right to seek a second opinion, either at the same hospital, or preferably another. It does not have to be the nearest hospital.

If you can, ask your practice manager if there is a gp in your practice who is familiar with rheumatology, they will know the best specialist to contact.

My diagnosis was delayed at the beginning as though the blood tests came back positive, I did not have the facial rash. The gp refused to refer me to rheumatology even though I was suffering from many other classic lupus symptoms.

Within a few months I moved home and changed my gp surgery. The new gp was willing to listen when I described my symptoms, looked at the blood tests and although a little reluctant, again because of no rash, referred me to St Thomas's. I lived in Dorset, so it was no easy trek to London but it was worth going to get a positive diagnosis.

This was many years ago, (I think it is Guys and St Thomas's now ) and not only lupus was confirmed but several other auto-immune conditions. My advice would be to persevere, you know when something is wrong with your body, don't give up.

[rosael56 in reply to bluebell99]

Thank you, I will persevere. Thankfully my GP is excellent and his plan to get emergency bloods next time I have a flare up seems to be a good one. He said he won't abandon me with this, which I thought was a really nice thing to say.

[KayHimm]

Rosae56 -

Maybe how you phrased it is accurate. The rheumatologist is rejecting the referral at this time. Your labs and symptoms are not enough that they feel they can make a diagnosis. These illnesses evolve.

I was referred to a rheumatologist who could not make a diagnosis but said “showing strong autoimmune tendencies” and told me they would be watching me. I wish more doctors would describe it this way. GPs can monitor for changes and refer again at any point.

I think your GP is a strong advocate. I had my first positive ANA after a flare. So definitely get bloodwork when your joints are painful or you have fever.

Best of luck.

Kay

[rosael56 in reply to KayHimm]

Thank you Kay. Thankfully my GP is excellent and very supportive.

I suppose my worry was, is there not actually anything wrong with me after all? But from the replies I'm getting on this thread it seems that my bloods indicate a problem and it's more likely the NHS capacity issues rather than me being a hypochondriac.

I will stick to my GP's plan of emergency bloods next time I flare up, and hope for the best! My backup plan is seeing a private Rheumatologist if all else fails!

[KayHimm]

Trust your GP. He knows you. These things are often not black and white.

You aren’t a hypochondriac. Rheumatologists don’t have the power to decide that. Your thyroid disease already shows you have issues.

Stay in touch.

Kay

[Numptybrain]

I’m one of those unfortunate ones that it only shows in my bloods occasionally so been put on the back burner for years until my respiratory consultant met me with bilateral pleural/pericardial effusion and asked a top radiologist for advice, he’s now got a fantastic rheumatologist onboard after I asked for a second opinion because first one was rubbish and we’re finally getting somewhere. My lungs are damaged because of the inflammation but I’m going to start infusions soon so hopefully feel the benefits soon.

Take care

Wendy xx

[Tonkie]

I was referred without bloods as my hand was double the size. I highly suggest taking pictures and being seen when any symptoms are visible. And getting bloods when you are suffering. All the best

[dg70]

A positive dsdna means you have inflammation. I was told by my hospital that each hospital may have different measurements of positive and negative dsdna but yours was 'positive' whatever scale is used. As soon as I was positive it was a no brainer for my Rheumy and she said then and there, you have Lupus. I have since reduced to borderline but hydroxy should do that anyway as it keeps inflammation down. I am so glad you have a good GP, that's half the battle. Log symptoms in a diary, take pictures of rashes etc. it all helps for future diagnosis and with the best will in the world we often forget to do that. I agree seeing an autoimmune specialist rheumatologist privately would be a really good idea if you can afford it. Once diagnosed no one can take that diagnosis back or shouldn't anyway. I went private then transferred back to a local Lupus centre of excellence near me on the nhs. Just make sure you don't go to the hospital that wouldn't even see you, you may not get the attention you need there. The important thing is to know from sure from an expert what you have and get the correct medication and monitoring that you need. Don't give up it can be a long journey but for your body's sake you need to keep pushing to a logical conclusion and not leave everything hanging. Your GP may know of a good Rheumatologist who will see you privately or if not go on a site like bupa and read up on Rheumatologists and their specialities near to you. If they don't mention autoimmune conditions then don't bother spending your money on them. I'm sure Lupus uk might be able to help if you call as to whether you are near to any Rheumatologists with a good reputation or a centre of excellence. Good luck. xx