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LUPUS UK
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Anti ds dna

Hi all. My anti ds dna was 8 in may last year. That is classed as negative. I am planning on arranging a private ana ana anti ds dna test through medichecks. Can I ask if anyone l is what is classed as positive? Is it over 10?

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Are you sure you want to have these tests done privately? I am not sure just singling our two tests is going to be productive. These rheumatologic tests are very expensive, and you really would need all of them repeated. You could have any number of combinations of them with an autoimmune disease. Can’t your GP repeat your ANA as needed?

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Hi thanks for the reply. I am just looking for advice and suggestions. The nhs only run these tests once a year. I just thought if I got them done privately and they have changed the could take to the gp. As my symptoms have changed since they were last done.

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My advice would be to report any changes to your GP. Take your temperature during times of increased symptoms. Keep a diary. The lab tests are indicated on the basis of symptoms. It sounds like you need thyroid monitoring. Have they tested for thyroid antibodies? Autoimmune thyroid disease is associated with many systemic autoimmune diseases, so just repeating two tests would not be helpful. There are other general tests that your doctor can run that indicate there is an inflammatory process going on. They will likely do that when you go in with any new symptoms. Remember that these diseases are based on a constellation of symptoms, not a single lab test. So keep your doctor posted. K

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Hi i do report symptoms to my gp. She re referred me back to rheumatology but the first appointment isn't until may. Yes I have high tpo antibodies over 1000. Again they were tested last may so not sure if they have increased too. I do take my temperature but it's always normal regardless of me feeling like i have a temperature. (Fan on and windows open, even in winter)

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May is a long time. But it is good you have an appointment. You should still report any changes to your GP. You want them documented and your GP can get you seen earlier if necessary. Hoping they get things sorted out so you feel better! K

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I do tell my gp but all they do is refer you on to specialists. My rheumatologist ruled lupus out straight away. I saw an endocrinologist (prof toft) as I was struggling with the constant fluctuating temperatures. Which I thought was thyroid related. He is concerned I have lupus and referred me urgently to dermatology due to skin problems. So will see if anything comes from that appointment.

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Dermatologists can be very helpful. Remember these diseases evolve. If your GP is referring you to specialists, he is trying to get the most expert opinion. That is good. Sometimes it takes a lot of minds to diagnose these complicated diseases. You can always let us know your symptoms. There will usually be people who can relate. K

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I know they can and are also very difficult to diagnose. It's a slow process as referrals take a while also. Do you have any information or what the high antibodies are or what they mean?

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No, and I think that is only something a rheumatologist can explain to you. They look at everything in a context. A low positive test may be significant in a patient with high suspicion of an autoimmune disease and not in a patient without symptoms. These are very complicated immunological tests. I really think you should let the rheumatologist evaluate you. Write down your questions. Right now what the dermatologist says about your rash seems as significant as any blood tests. When are you seeing the dermatologist?

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Which high antibodies? I am sorry but I thought your tests were initially normal.

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I don't have an appointment through for dermatology yet. Hopefully that will be soon. The high thyroid peroxidase antibodies. The anti ds dna was just slightly below positive. Positive ana result.

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Well, if your endocrinologist is suspecting lupus, you have symptoms that are concerning. So in your case even if the ANA is low positive, it is significant. Can you take pictures of your rash for the dermatologist in case it remits? Rashes are important. I was called in to the rheumatologist’s office who was watching symptoms the day I had a rash precipitated by sun. That was when I had enough symptoms for diagnosis. That is why I am telling you that the dermatologist appointment is important. They do not just diagnose skin disease but diagnose also what is consistent with systemic diseases.

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Hi yes I do have a photo if the facial rash on my phone. The rash on my chest is always there anyway. It just gets worse when out in the sun. I never hols much hope these days as you can feel disappointed after hospital visits. But fingers crossed the dermatologist can help in some way

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Great. All important. I would be surprised if the dermatologist is not helpful. If they are uncertain, they can do a biopsy. They won’t diagnose the internal disease but will be able to say whether it looks like an autoimmune disease or not. Make sure you mention the positive ANA to the dermatologist. Good luck.

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I really hope so. The referral letter indicates the concern of lupus the endocrinologist has. I will mention the ANA to them but it would be in my notes i'm sure.

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Excellent

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Can i ask how long it took for your diagnosis? I know it can take years.

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A year and a half. I thought that was a long time. But many people aren’t diagnosed for many years. They often can say you are showing autoimmune tendencies or make a provisional diagnosis. After your dermatology and rheumatology visits, you are going to know more what they suspect. The only thing I hear is specific to lupus is your photosensitive rash. That is significant. They will probably run more tests. I actually started with thyroiditis too.

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The rash first started about 2/3 years ago as did my raynuads. Which is worse now. I don't know much about thyroiditis or whether I have it. Glad you got a quick diagnosis.

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What did the rheumatologist say about your rash?

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He made no comment about it. I told him that its agrevated by the sun but just pretty much ignored it.

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Is the rash on your face new? Is this why the endocrinologist is referring you to dermatology?

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Yeah. And he picked up on the rash on my chest.

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Makes sense. Good he is referring you.

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I know. I wish he was a rheumatologist. As he was very helpful and is trying his best for an urgent referral. Do you suffer from reynauds too? Mine is mainly one side. My right hand becomes red swollen. Not sure if that's the reynaud's or something else.

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No, I have never had Raynaud’s but many here do and can tell you their experiences. It sounds like he really cares about you and sees your symptoms have changed. If you cannot get in to see a dermatologist for a long time, can you see one privately? It might be worth it considering what you are going through.

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He was really nice. Sadly it's not his specialty. Unless things change regarding my thyroid bloods. I am hoping as the referral is from him personally it might be quicker. But who knows with the nhs. It's just costly going private. It's so confusing with symptoms that come and go. I had a spell of a week with breathing problems. That hasn't happened again so not sure if that was a symptom also.

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I hope so too. Such a hard time for you not knowing what is happening. Endocrinologists see lots of patients with autoimmune disease.

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Yeah i know. And from what I gave read about dr Toft he is very good. So I trust his judgement

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I have a feeling he is a very good doctor and has been alert to significant changes in you, knowing you already have autoimmune thyroid disease. Maybe he will be able to get you in to see the dermatologist soon. I would think that a possible lupus patient would be high on the priority list of a dermatologist, but I am not familiar with the UK system. Do not hesitate to reach out to your doctor. Of course, he will understand any concerns you have.

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For me personally he was very helpful. And I have read positive things of him also. I am hoping the referral comes through soon. I don't know about the US system but here in the UK ours is so slow.

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Are you seeing Daniel Toft?

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No as he said my thyroid levels are ok just now. Only that I will develop autoimmune thyroid disease. So when I do I will see him. Although very high antibodies do indicate that no?

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I think you may be seeing the doctor who is president of the British Thyroid Association and is a prominent endocrinologist. So you are in good hands! It sounds like he knows that because you have the auto-antibodies you will eventually become low thyroid. You will be watched closely.

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Yes. I am glad that I saw him. As he was very helpful and is very knowledgeable.

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I meant Anthony Toft

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Hello Sophie2009

There are slight differences between laboratories depending on the method they use for the test, and the units of measurement they report in, so you can only really judge normal/abnormal depending on what the particular lab tells you. As you may know, Medichecks will send your result together with the bracketed normal range for the particular test they use. There will also be a note from the reviewing clinician giving an interpretation of your result, so if it's out of range, they will highlight that and advise appropriate action. x

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Hi thanks for the reply. Yeah I have read that on their site also. It's just trying to piece together information in trying to get help and a diagnosis.

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Yes, I've used Medichecks a few times and it was instrumental in getting a diagnosis of adenal insufficiency for me x

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Hi this is the first time using them and have read good things on here about it. I'm glad it was helpful for you.

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One thing the NHS could learn from the success of these private services is how we patients want, and are entitled to, automatic access to all our test results. The main disadvantage of them is that it's easy to get lured into ordering tests that actually aren't much use. x

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Could not agree more. Many of us have access to our test results here, and it can be great for patients and doctors. If you have a question, you just e-mail the doctor on the link provided next to that test. I do not see how patients ordering their own tests will be helpful. Testing can be so expensive — and when not indicated, will just produce a lot of false positives. We have the over-testing problem in the U.S. and it can actually kill patients. One test leads to another and the patient ends up with a stroke or some other horrible thing that could have been avoided. The U.K. apparently does a better job.

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Mine is over and under sometimes but it doesn't change the fact I have Lupus, it just shows how active it is at the moment. If it is lower there isn't as much lupus activity, so your kidneys wont shut down. I suggest time. Lupus blood tests are waiting games.

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Hi thanks for the reply. I know it's a difficult disease to diagnose due to fluctuating tests. Can I ask how long it took you to get a diagnosis?

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A few folks above mentioned seeing a dermatologist, and I can say that my dermatologist was the most helpful specialist I saw. I had a sun-induced rash that was getting progressively worse despite no further sun exposure. Due to my family history, my GP ran a few simple tests, and my ANA came back positive - low positive - but positive nonetheless. My GP sent me to a rheumatologist who just said he wasn't sure what it was, but that it wasn't lupus (said about 10 times in fact). GP was apologetic and sent me on a rush appt with a dermatologist - he looked at my skin for about 10 seconds and said that looks like subacute cutaneous lupus. Took a couple biopsies, which confirmed his suspicion, redid the antibody panel (I came back more positive on ANA, and was also SS-A positive). My dermatologist put me on plaquenil and topical steroids and within about 2 months the rash was gone. I still have a few other systemic symptoms I am dealing with (low platelets, swollen glands) so I will have to go back to a rheumatologist, but at least I am going back with verified diagnosis of an autoimmune disease. Time from first appearance of the rash to diagnosis was about 6 months total.

I should also note that half-way through the process I had a lupus panel performed privately. It was about $180 US for the lupus panel and a CBC and it did show the positive ANA and SS-A. I had this information when I went to the rheumatologist, but it did not change his opinion.

Every person's path is different on this journey - my hero was my dermatologist (and my GP for supporting me). Hope that you find one or two heroes as you work to sort out what is happening with you.

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Hi my rheumatologist also dismissed lupus straight away. I am not seeing in until may so I am hoping when I see the dermatologist she will be more helpful.

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Hi Sophie, I was diagnosed with lupus SLE in January 2018, It took 25 years to get an actual diagnosis from my rheumatologist, this was after I ended up having to have heart surgery, I have chronic pericarditis with pericardial effusions, I had to have a pericardial window in my pericardium (a 3cm hole made in the bag around the heart) I had drains put in my heart and lungs and they removed 1.5 litres of fluid from them they tested the fluid and it came back as inflammation, the whole of my body has inflammation in it, I also had fluid in my internal organs, suffered a rash and reynauds forever. I am now on high dose steroids and 20mg methotrexate, to try and stop my immune system from being so aggressive, My weight ballooned by 4 and a half stone in one year and i now have to be pushed around in a wheelchair, so please don’t take no for an answer and fight for what you want. I just accepted what I was told and ended up in the situation that I am in now, despite having positive ana’s over the years I was still told that I did not have lupus until the surgery.

Good luck to you, wendy

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Hi i'm sorry it took so long. How awful you had to wait 25 years. I am considering getting another opinion from a different rheumatologist. Maybe wait till I have been to dermatology though. And see what they think. My ana was 1.160 I think that's low positive. My worry is having it tested again as it's negative as that's how things seem to go these days.

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Dear Wendy,

Might I ask if your weight gain was after the steroids (and attributed to steroids) or before steroids?

Apologies for jumping in on your post Sophie.

Lulu.

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Hi lulu,

Sorry I have only just seen your question, I have been bed bound for two days, my weight started to go up slowly after a very long flair, I did not know this was a flair as I had been told for so many years that I didn’t have lupus, I was admitted to hospital, and was immediately put onto 30mg steroids a day and had to stay on them until my rheumy appointment, and when I saw her she immediately diagnosed me with SLE and upped the dose to 40mg per day and said that if I had no infection that she would start me on methotrexate asap, but this was when my weight really started to go up quickly, I was hungry all of the time and although my husband was making healthy things to eat, it just would not stop the hunger, then from it I got Cushing syndrome, which i have a great big belly which feels like I have a solid board down both sides of my body so I cannot bend down at all, I have a great big moon face and I also have a hump of fat on the nape of my neck, but my arms and legs are of normal size, this has really knocked my confidence and I barely go out, because I also have osteoarthritis in my ankles, knees, hips and spine, if I have to go to a hospital or doctors appointment, I am in a wheelchair. Also what has happened to me is I have been diagnosed with pre-diabetes, I had to be weighed and measured and to my complete embarrassment my waistline was 47 inches when she told me I just wanted the ground to open up and swallow me, so I have a vicious cycle going on, and although my rheumy doctor is trying to reduce the steroids I have been on them nearly 2 years now there is no sign of any weight loss at all, I now know looking back over the years that when I have a flair my weight goes up, and the more my weight increases the more inflammation I have in my body. I hope this helps you and I hope I have given you the info that you wanted, you can ask me about anything as I am very honest about my health, good luck to you wendy

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Thank you so much Wendy. Yes, this was what I was curious about. Of course everyone gains weight on steroids but I haven't heard any stories from people about weight gain prior to steroids. I asked because it is not unusual for me to wake up very puffy and 4 to 6 kg heavier than the day before. It can take days to go back to normal (though is on an upward trajectory) and isn't in line with my eating habits. I swell up everywhere but especially my arms, wrists and hands. It does seem to happen before a malar rash and mild fever comes.

Thank you for your response, I hope you have a better day today.

Lulu.

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Sophie, first let me explain a few things to you. In the USA, if your dsDNA is over 4, then you are positive for lupus. About 2%-5% of people with an autoimmune disease will show a NEGATIVE ANA! However, there are many people that have a positive ANA and do NOT have an autoimmune disorder. Other blood test should be done to determine if you have lupus, i.e., CBC, sed rate, kidney and liver assessment, urinalyisis and an ANA (but remember you may have a negative ANA but still have lupus. Many times your symptoms can help to give a concrete diagnosis. I wish you nothing but the best.

Dr. S. Sachs (in the USA)

P.S. there are many other tests that can be given to people diagnosed with lupus.......Coombs antibody, antiphospholipid A etc.

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Hi i understand all that. I'm still trying to get my head around everything. I'm awaiting a dermatologist appointment for skin rashes. Hoping they will be helpful also.

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