Morning everyone,
I wonder if any of you could help me. I have many symptoms of lupus for years but also symptoms of fibromyalgia. I have been diagnosed with fibromyalgia for 4 years but no treatment.
I had autoimmune blood tests done which I do not understand. Does a medium Positive mean I have lupus or do I need other blood results to be positive also? Thank you so much for your help
Hi Sammy114
This is how I understand it, The normal ratio for Antinuclear Antibodies (ANA) is 1:40 to 1:60.
A ratio of 1:640 or greater indicates a high possibility of autoimmune disorder.
Your ANA is out of the normal range but that doesn’t necessarily indicate an autoimmune disease. Perhaps you need further tests to see what is going on for you.
I have Lupus (SLE) and my ANA ratio is 1:2560 - a very positive indicator.
I hope that helps
Hi. I have same ANA titre (number) ie was 1:320 now 1:80. I was initially told that it was weak/ equivocal at the lower titre and therefore not helpful. Then at 1:320 they said it was significant (but perhaps this was the pattern - which points to scleroderma). Anyway I was biopsied for Sjogren’s and this was highly positive so no argument that I have this. 70% of sjogrens is +ANA and 90% systemic sclerosis is +ANA. I also now have a specific scleroderma/ myositis antibody which matches with the nucleolar ANA pattern and I’m diagnosed with systemic sclerosis too.
The number/ titre of my ANA is apparently irrelevant now and doesn’t ever get used to indicate disease activity - it’s just marked as +ANA. It might be different with Lupus but in scleroderma it’s the more specific antibodies that they go by once these show. In your case they might have only taken quite basic ENA antibodies compared to my hospital lab so there are rarer ones they may have missed if so.
If your ANA is positive at 1:320/ 1:160/ 1:80 -and you have symptoms then I’d expect them to investigate further and at least diagnose you with UCTD. My old GP used to speak of a jigsaw with another piece turning up but not yet complete. It’s now complete for me but it’s taken many years to get there. Hang in there and keep confidence that you know your body best.
How do you find out your ANA ratio? I asked the hospital to send me my blood test results and all it says is "ANA (HEp2) Positive" and "Pattern Cytoplasmic speckled". ENA also no numbers & negative and dsDNA result says <9.80 & negative. I had to pester them enough just to get these and they did a lot of other blood tests they also haven't sent me the results of 🙄
I never used to have access to this either so would ask GP. However I now just get print out of full immunology lab screens with my rheumatologist’s letter - which they address and send to me cc GP. Guess it varies from hospital to hospital. Now I’m fully diagnosed I think it’s unlikely that they will run it as often as they have until now.
I don't think the GP got a copy of the blood tests, as they sent that to me separately when I chased them up. The wonder if that's so they could tell the GP everything was negative in the letter, when it wasn't, but maybe I need to be a bit less cynical! 😂
My GP ran the ANA test in January 2022, but hid the results because she thought they would make me anxious if they were borderline. I'm going to request access to them anyway and I might also ring the hospital again and say I need more detail because I'm either going to go private or make a complaint.
Well I did manage to get other lab and letter reports when I asked my rheumy prior to seeing Professor Denton privately for one off. She arranged for rheumatology sec to forward everything to me so I could pass onto him via his PA. But it wasn’t always this easy in past so I understand. I once had a lumbar puncture and was told all was fine (only excluding MS) but it turned out they were not giving me full picture at all and it wasn’t fine - but it took a different specialist in another hospital to see them on my portal and explain that it showed a systemic process was occurring.
Same with a gastroscopy reported as normal years ago when it turned out that I had severe reflux. He thought this such a common finding that not worth mentioning on his report?!
So yes always insist on copies and openness. With this Martha’s Law etc lack of nhs openness and transparency are getting a lot of media coverage now so it should be a good time to insist they share! X
I listened to a talk from Dr kaul yesterday re this issue on lupus uk site. He summed things up by saying someone could have a broken finger and positive ana, they don't have lupus. It's symptoms plus bloods (or just symptoms) that count. However, some of us are negative ana lupus. All my bloods are negative yet I have lupus and sjogrens syndrome because I have enough symptoms. It's a good talk to listen to. It's on lupus uk, Cardiff information day video. As many will tell you, there are specialist rheumatologists and non specialist. Lots of us have had to pay to see an autoimmune expert rhuematologist to get a definitive diagnosis. Hope you find out soon.
By the looks of it it's an incomplete series of tests. You haven't tested positive for dsDNA but not everyone does (it's an indicator for kidney problems). For example, for the first time in seven years by dsDNA is negative, but I still have lupus. You also need a full blood work up and testing for complements and other autoantibodies. You seem borderline for ANA, which is just a generalised indicator for autoimmunity and not terribly helpful.
Autoimmunity evolves over time too, so you may be in early days or just very borderline. Best, if you can afford it, to see someone like Dr Kaul at the London Lupus Centre to discuss the results. He'll give you an hour and suggest other possibilities too.
But as people say, they need to treat your symptoms, try things out and see if anything works, not abandon you.
You can also help yourself by resting, tackling stress, diet and so on. Illness is a wake up call to say, something isn't working for me. It needs to change. Rather than carry on as normal.
Thank you everyone. I have my blood results on nhs app. I saw rheumatologist when I was pregnant ant with my daughter who diagnosed me with fibromyalgia but over past year or so I feel worse than ever with symtpoms like, fatigue, anxiety, depression, mouth sores, joint pain, achy shoulders and jaw joints. I have also had problems with my kidneys for few years, had scan got scarring on my left kidney but keep getting traces of blood in urine samples too. I feel drained and tired of feeling ill all the time. I feel like I continuously catching virus horrible .
I would hope that with those unpleasant symptoms and +ANA you’d be seen again, reviewed and investigated more extensively and trialed on first line treatment for a connective disease disease. It really depends on more than the blood panel you’ve copied here. Do you have raised inflammation markers or others such as low or raised compliments for example? Some people don’t have much show in their blood work but kidney or skin biopsies or other tests show Lupus or others. What does the GP or rheumatologist say will happen next?
Thank you for the reply. I have a slightly raised inflammation marker and raised creatinine. I have another blood test Monday to check ana levels again by gp but have a 4/5 month wait to see rheumatologist.
I’m glad you have a referral to see a rheumatologist. I understand that 4-5 months will seem like a long wait to you but actually it’s not a long time in rheumatology - particularly not these days. I waited 4-5 months when first referred 12 years ago and then another 4 months before I was seen again and diagnosed. It was a horrible time but I think many wait longer now for first appointments and even longer for reviews. I waited five months this year for a private consultation with one of the top scleroderma experts but it was well worth the wait for diagnostic clarity.
Best of luck 😊
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