I'm new here and just looking for some advice on my recent blood results...
I am normally fit and well, but the last two months have really taken a toll on me. It started off with digestive issues, frequent headaches, pins and needles, muscle/joint stiffness and loosing more hair than usual. I went to the GP who said my ferritin levels were low and my thyroid is steadily increasing. However, after having a skin biopsy, I became much worse - nausea all day everyday, constant reflux, insomnia, very dry mouth, very poor appetite (I've lost 6lbs in two weeks) and recently mouth ulcer.
I am in regular contact with my GP (making a nuisance of myself) and have been undergoing microbiology. My GP queried lupus and sent me for bloods and my recent bloods returned yesterday - showing the following:
ANA - positive
ENA - positive
Hep-2 = Speckled
Anti dsDNA antibodies = 48.2
I will be discussing these with my GP early this week, but wondered if my blood work is indicative of Lupus. What were yours?
I believe I have an underlying gut infection, which may have started all of this. But it's really affecting my quality of life 😔
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Diagnosis of lupus/SLE is usually quite a lengthy business, complicated by what are often rather generic symptoms (ie that could be cause by any number of other conditions), and the fact that there are several other systemic autoimmune conditions that need to be excluded. Its impossible for anyone here to offer a diagnosis of course, but the Lupus UK webpage on diagnosis mightr help orient you towards the things a rheumatologist will be looking for lupusuk.org.uk/diagnosis/
From the results you post here, ANA levels can vary a lot, and the exact titre is useful to know eg a low dilution number like 1:8 might only mean a person has done vigorous exercise recently, whilst a positive result with high dilution eg 1:1640 is more suspicious. Likewise, although a positive ds-DNA test is often considered specific to lupus/SLE, different labs report using different scales, so you'd likely need repeated results with a know unit of measurement to know how significant this result is.
So, sorry not to resolve anything. But rest assurred that most of us here will have experienced a similar phase of uncertainty and will be understanding if you need to vent or ask further questions. Keep going!
My titre was 1:80 and the dsDNA states positive, if > 30 (for my specific lab requirements) 🤔...
After reading some posts here, I appreciate a lupus diagnosis is not a straight forward process - how frustrating 😒.. I've been so unwell I haven't been able to work for 3 weeks.
Fingers crossed I will get to the bottom of it soon 🤞.. and thank you for your support 😊
You're welcome. Yes, it can be a frustrating business searching for a definitive diagnosis. But on the other hand, lacking one need not necessarily mean you dont get effective treatment. If you've good evidence of systemic autoimmunity, many rheumatologists will start you on a standard treatment (typically hydroxychloroquine plus steroids) whilst leaving you with a non-specific diagnosis. That's been my experience. After an initial diagnosis of heart failure, I was rediagnosed with UCTD. Over the following 7 years, I've had revised diagnoses of "polymyositis", and most recently, the non-commital "atypical myopathy". Regardless, I've remained on HCQ and steroids throughout. x
Hello. Another here like Whisperit who lived with diagnostic uncertainty for 12 years (to a lifetime) until last year when I sought out a Professor who specialises in my rare systemic autoimmune, Systemic Sclerosis, and finally received diagnostic clarity. Your bloodwork points to Lupus but I would say that the gut problems may point more to others such as mine or Sjogren’s. Your GP may only really have come across Lupus as opposed to the other rarer conditions so probably hasn’t tested for the full range of autoantibodies. You would need a referral to rheumatology for this and a solid diagnosis and treatment. Hopefully this will happen next.
Meanwhile getting your thyroid problems treated by the GP would be a good idea because, even at sub clinical level, this can influence both your symptoms and your bloodwork.
As well as Systemic Sclerosis/ Scleroderma I also have Sjogren’s and Hypothyroidism and Hypermobile EDS/ hypermobile spectrum disorder but was only diagnosed with the latter last year by the professor who diagnosed my Systemic Sclerosis, aged 60. My main symptoms are severe paralysed gut but I also have bad Raynauds and, prior to treatment, suffered hair loss and rashes. These latter turned out to be multiple allergies to environmental factors and to medications, as well as to inadequate doses of thyroid medication. I hope you do get an urgent rheumatology referral and best of luck.
My thyoid was 4.88 in August, however they won't treat as protocol is to re-test in 3-6 months 😒..
Background:
I developed an irregular heart beat after my first bout of covid two years ago. Covid always knocks me off my feet compared to the rest of my family. Last year I became B12 deficient and needed a loading dose of B12. This year I then had a UTI which I haven't had for YEARS, but then had an allergic reaction to the antibiotic sachet the GP gave me and ended up in A&E.
I have been to A&E a couple of times over the last two months too, with sharp chest pain when I breathe in. I feel worse and worse everyday.
As someone who is usually fit and well, used to run regularly before the extreme fatigue kicked in last year and not on any regular medication. I embrace anything at this point.
I am going to book an appointment with my GP today, to discuss bloods and recent H.Pylori result. 🤞 I get some treatment ASAP.
Thank you again for sharing your experience! It's very insightful 😊
Hi again. Firstly I’m no expert on all this, despite having been diagnosed with and treated for subclinical hypothyroidism about 21-22 years ago. I only really know how to interpret my own thyroid bloodwork on quite a basic level. However I do seek out expert patients views on the large Thyroid UK group here occasionally. So this is my suggestion for what it’s worth: When you see your GP again to discuss results I think it would be well worth asking for a full thyroid panel including your free T4 and T3. Nothing can actually be ruled out unless these two are tested alongside the TSH because they measure your pituitary function I believe. Hypothyroidism could explain many of your symptoms and your TSH is definitely high in range. If mine was at that number I’d be bed bound! And then, depending on your GP agreeing to test the full thyroid panel and on results, you could discuss getting a trial of Levothyroxine. Treating sub clinical hypothyroidism (most commonly Hashimoto's) is something your GP could do to be proactive, given the length of wait that referrals to specialists, even urgent, usually take. I only have a weakly positive ANA now but when underdosed on Levothyroxine some years ago my ANA soared and I felt really lousy. This was same year my Sjogren’s was diagnosed and for me Sjogren’s symptoms (including Sicca, chronic constipation and gastritis) go hand in hand with my Hashimoto’s and my dose of Levothyroxine. So I emphasise this because it’s something your GP can do /try our while you wait for a rheumatology appointment to materialise 😊
Ahh thank you again OldTed60, for your advice and personal experience, it's very helpful 😊
I am 36 and suprised how badly my health is declining. It appears symptoms have been creeping up since I developed an arrhythmia post covid (two years ago).. Last year I started getting dry eyes, very fatigue, repeated sprained ankles from running (which is abnormal for me, I've run for 8 years).. Became B12 deficient last year. As I said previously, had a stubborn UTI this year, which I never have and an allergic reaction to the Fosformycin 😬.. Bad experience, which had frightened me from taking any meds.
Then my ferritin at 11 and thyroid is out of range this year (mum has underactive). After a loading does of B12 last year, lab stated this would be maintained for two years but has gone from 600 (post loading dose) to 235 already. I had WLE done last month, where I was excessively bleeding during and post procedure, yet my clotting factor is clotting too quickly and producing an abnormal result.
I seen my GP yesterday and I have been urgently referred to rheumatology, due to my above symptoms and recent bloods.
I know this isn't going to be a simple process, but I hope to get something sorted asap - as I've lost 7lbs in 2 weeks due to the gastro issues and GP has given me another month off work. Which is also stressing me out, as I'm nearing the end of my nursing degree - having been successful in a district post.
🤞 my referral is speedy, as it's severely impacting my quality of life at the moment.
Thank you again for the TSH info, very interesting, I do believe they are checking those in December. At the moment they are reluctant to treat, to avoid unnecessarily overtreating with my ongoing irregular heart.
While it is true that autoimmune diseases can be difficult to diagnose, it doesn’t mean they aren’t clear cut in some cases.
I didn’t want to give my opinion because it would sound as if I was trying to diagnose you. But now that your GP has referred to the rheumatologist, I will say he wouldn’t have mentioned lupus had he not had high suspicion. Also, doctors are advised not to use ANA as screening. When lupus is highly suspected, a positive ANA is significant. Yours is low so didn’t know how your GP would interpret it. Your anti DNA is positive - very specific to lupus. Your Your ANA is speckled - mine too - and I have anti LA antibodies. Your eyes are dry so it will be interesting if the rheumatologist tells you your Sjogren’s antibodies are positive.
This takes a lot of knowledge to put together but I would guess you aren’t going to be complicated to diagnose. If your GP thought your hair loss is not from thyroid disease, then that is a lupus criteria. He must have noted swelling in joints or morning stiffness. With your anti DNA antibodies, you are above the classification for lupus.
Although the classification for lupus is used in a strict sense for research, it is still very relevant. Experts arrive at the classification so that researchers can do a more accurate job.
I have undifferentiated connective tissue, not lupus. When I asked my rheumatologist why he pointed to negative anti DNA, normal complement, and low positive ANA. So you see how they paint a picture. I am lupus-like because of other symptoms and an antibody but not lupus.
So if you read between those lines, you see how they think.
My sense is you are will get a fast diagnosis because, as your GP said, the tests supported his suspected diagnosis.
Again, not making a diagnosis but acknowledging GP’s actions, my own rheumatologist’s reasoning that shows the emphasis on certain signs and your possible specific lupus symptoms.
When is your appointment with the rheumatologist? Note any fevers, rashes or new symptoms.
Thank you for your reply Kay 😊, your answer is very informative and helpful.
Even though they have sent an urgent referral through, with current blood results alone - my GP has said there are more in progress. As it's going through panel, I'm suspecting the labs are looking for specific antibodies now.
I have recorded a timeline of symptoms, which appear to have become progressively worse overtime - which have now come to a head. I suspect I picked up a gastro infection while on a nursing placement in the community, in August (which is also under microbiology) which has completely exacerbated all symptoms.
I've been making a nuisance of myself, with regular trips to the GP, over the last two months because I've felt so rotten and nothing made sense, but it's slowly starting to build a picture.
I can't wait to just start managing these symptoms; enabling me to get back to what I love doing the most - caring for people. But I believe you cannot give your best, if you do not feel your best 😔
You are certainly not a nuisance! You are person who is suffering and is giving her doctors information needed to steer them in the right direction.
I often think I would have been diagnosed sooner had I remember my rashes when my parents took me on a beach holiday because I had been feeling so badly, going to the doctor, blood tests showing anemia. It’s all in the story initially.
The anti DNA is a specific antibody. I think they only request that if they suspect lupus. The ANA and ENA confuses me. Some labs have a reflex system. If ANA is positive, they do the specifics. Your doctor may have ordered a separate panel now.
Also, you mentioned your blood not clotting properly. That could be a lupus antibody. That is also tested separately in people suspected as having lupus. That is my one characteristic lupus antibody. All these things are weighted in terms of significance.
Sounds like you are in good hands. You have a very sharp GP. He was on top of things.
Hang in there. You will feel better when they clear that infection.
Hope you get an appointment soon. Your GP can stay in touch with the rheumatologist and continue to monitor you. There’s always email!
I have seen other GPs at my practice - about my symptoms, over the past two months, but I met this particular GP for the first time 2 weeks ago, as he is relatively new to my practice. He listened to me and requested all the microbiology necessary. Lupus was not even something I'd considered! but as a senior Dr, he clearly knows his stuff and I am so grateful he acted on his judgement because I'm finally getting somewhere.
Thank you for all of your support and information sharing today - I really appreciate it . I don't know anyone close to me, with lupus or alike, so it can feel quite lonely. This forum has been so helpful and I only joined two days ago, such a lovely bunch 😊
It is a lonely process but good your doctor told you of his suspicion so you could talk to people.
Often things are such a muddle the GP is unable to say much. That was the case with me. Even the rheumatologist was « wait and watch » but see autoimmune tendencies. «
We all présent differently. Classic lupus is now considered the tip of the ice berg. Many of us are hodge podge. Have to see what rheumatologist says but your GP seems to be saying classic lupus.
I checked on the ENA and the specific antibodies seems to vary according to lab. Your GP may be doing what used to be called (way back when I was being worked up) lupus panel analyzer. I remember this is very expensive but comprehensive. I live in the US so our labs may be a little different.
Onward and upward.
You are fortunate to have one of the senior doctors.
Many of the symptoms are Sjogrens specific that you describe. Sjogrens often times is present with Lupus and other autoimmune diseases. Dry mouth and eyes, mouth sores, fatigue and inflammation are all symptoms of Sjogrens. If you have both, you will likely get on a regimen of drugs to help regulate and or suppress your immune system. Asthma, sinus (chronic) problems and bad reflux are also Sjogrens related ailments. I will say that one thing that helped me was managing my diet (no sugar, almost no carbs and no processed foods) will help dramatically. Another thing that is a trigger for my flares is UV exposure. So I wear sunblock and stay out of prolonged sun exposure. Also wash my clothes with a UV blocker so I can walk to the mailbox and back (a quarter mile). I force myself to exercise three times a week - low impact, more stretching and weight bearing with some Pilates thrown in works for me. I know the journey is frustrating, but take a deep breath and keep pushing for answers. Prayers heading your way.
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