Latest Test Results

[Leenie0811]

Morning everyone,

Since my last post I've been doing some digging and found out I can access my medical files electronically so as you can imagine I jumped at the chance of accessing this, I now don’t have to request information to see it myself which saves them really awkward whys from the doctor.

So when I was looking through my test results I found the last autoimmune profile they did and this was where I was told about the positive anti-nuclear antibody in the results but this has been in previous tests too in Dec/January and October they have the same reading as below:

Anti-Nuclear Antibodies IgG POSITIVE 1/320

Anti-Mitochondrial Antibodies Negative

Anti-Smooth Muscle antibodies Negative

Liver Kidney Microsomal Abs Negative

Liver Cytosol 1 (LC-1) Abs Negative

Gastric Parietal Cell Abs Negative

Further laboratory investigations to follow was at the bottom of the notes and next time I go they are checking these again (so 4th time) along with my inflammation levels, the doctor did ask if SLE ran in the family but apart from me and my brothers my dad’s family have all died so I've no knowledge of their medical history, also they weren’t the type to go to the doctors so if they did have something I wouldn’t know.

Please could someone explain to me what IgG Positive 1/320 means?

For any background I covered the majority of my symptoms in this earlier post:

healthunlocked.com/lupusuk/...

Thanks again,

Leenie

[whisperit]

Hello Leenie0811

Here's my understanding - but I could be wrong, so do check if someone more knowledgeable corrects my answer.

IgG antibodies are the commonest type of antibody circulating in our bloodstreams. So if your body is producing antibodies against your own tissues, your blood will contain anti-nuclear IgGs. The ratio shows how far the lab has had to dilute your sample before it can no longer detect the anitbodies. Low ANAs (say, 1:40), are usually thought to be insignificant.

In your case, the lab had to dilute the sample by a factor of 320 before IgG -ANAs could no longer be detected. This level is usually thought to be a significant positive, and suggests a disease process is going on. But it doesn't tell you how serious, or what specific disorder it is - ANAs can be positive in quite a wide range of conditions. With a positive ANA, many labs automatically test for ds-DNA (which is thought to be highly indicative of SLE/lupus) - but you don't list that amongst your results? In any case, it's the combination of symptoms that leads to a diagnosis - blood results alone aren't sufficient.

Hope that helps x

[Leenie0811 in reply to whisperit]

Thank you for the explanation, I was wondering what the number was at the end and researching didn't really show up many useful results. From what I can see in my records the test for ds-DNA hasn't been done. Would this be standard procedure to test if positive anti-nuclear antibodies are present?

The next set of tests are on May 20th, would you ask for anything else to be tested other than the anti-bodies, ds-DNA and inflammation levels? I am going to make a telephone appointment with my GP to try and get them to make sure they do them all x

[whisperit in reply to Leenie0811]

As eekt says, going by your previous post, you should be referred to rheumatology. They are the people who have the specialist experitse to request and interpret further tests - not your GP! The guidelines eekt mentions should prompt your GP to do this x

[eekt in reply to whisperit]

Cheers whisperit! It's my favourite gripe, when GPs hum and haw instead of referring, given the consequences for some if it goes untreated

Leenie, the dsDNA is usually done automatically by the lab if ANA is positive - and sometimes they even include helpful comments such as 'dsDNA is highly suggestive of SLE' for GPs who don't know the significance of the test. Fair well! xxx

[KayHimm in reply to Leenie0811]

I the U.S. I think the anti DNA comes under the lupus panel. I would be very surprised if many specific auto-antibodies were not done. My impression is the doctor either does and initial ANA and if positive, the lab runs a variety of tests or they can request a panel separately even if the ANA is negative. I have no doubt your doctors have run both ANA and ENA and anything pertinent. They seem to be aggressively pursuing a diagnosis. Your question about your ANA is a great one for your doctor. They should be happy to explain everything to you. Try not to get too caught up in the meaning of the labs. The doctor is looking at a whole bunch of things right now. Remember you do not have to meet lupus classification to have a systemic autoimmune disease. You may need a rheumatologist’s opinion. Hang in there. Tough time not knowing. K

[Leenie0811 in reply to KayHimm]

It does seem as if they are looking at different options I just worry I am going to sit here and have the same test repeated over and over again with no real answers. I am going to ask when I go back can I be seen by a rheumatologist or can they do anything else other than the antibody checks to get me some kind of diagnosis x

[eekt in reply to whisperit]

Hi Leenie...an immunological blood test such as ANA plus at least three 'clinical' criteria - some physical, some bloods - are how rheumatologists go about diagnosing SLE...going by your symptoms (from your last post) and three positive ANA's you've had, you should have been referred to rheumatology before now

Take Table 5 from the UK guideline* to your GP and ask for a referral (and you could ask GP to do the tests a GP can do from Table 6)

I've been in the same situation with work, but don't panic, when you get your referral, ask GP to write a 'fit note' in explanation that further investigations by a specialist are underway....and try not to stress, as it feed autoimmunity (difficult, but important).

Hoping you get somewhere soon! xxx

*academic.oup.com/rheumatolo...

[Leenie0811 in reply to eekt]

thanks for sending that link over I have had a rough read of it and I will print it out like you said so that I can take it to my doctor at my next appointment. Each time I am off I try and get an appointment with one of the doctors, they don't usually write me a fit note as I haven't been off for more than 7 days but they do give me an appointment card. This seems to help at times but I feel there's only so many times I can do that before they say it isn't good enough. Its probably just me worrying over nothing but I want to be able to go more than a couple of weeks without either coming in sick or having to take time off x

[eekt in reply to Leenie0811]

It's tricky when bosses start getting twitchy, wonder if it might help to show them the Lupus UK info for employers, or the one called 'getting a diagnosis' and saying this is what's being looked in to, and it's not so straightforward...GPs can write a fit note saying 'fit for work, but consider allowing home-working a day a week, or flexible hours, while investigations are underway' or such like...I had one, though my GP thought I was a malingerer, LOL! Chin up, you're getting somewhere and keep posting! xxx

[Leenie0811 in reply to eekt]

I do have a laptop as well as a desktop PC for work so I might look into that, its complicated as I have two managers one who sets me work and the other who deals with my HR/Development stuff. The HR one is really understanding, doesn't ask questions or anything he accepts I have pending investigations with the doctors. The manager that sets the work can be a bit tricky to talk to so anything is worth a shot to help see how its affecting me as I know one day I can be fine and the next I'm coming into work so poorly I have to be sent home.

Oh god that must have been awful for you to deal with! Did you have to get a second opinion or did that doctor end up referring you? x

[eekt in reply to Leenie0811]

Oh that's good...it's the HR one that's important, because it's he/she that will need propose solutions - aka 'reasonable adjustments' - when you have a diagnosis (there are special provisions for progressive and fluctuating illnesses in The Equality Act, so use those words!), so keep HR one on your side and gently align him/her into dealing with your workload manager

I have an ongoing GP saga, but I have a dozen rheumy's letters now, all stating SLE with the blood tests used for diagnosis - including dsDNA! - but that GP is a clown, he doesn't know what dsDNA is, LOL!

All the best with your next appt, and with work! xxx