Apologies in advance as this is going to be lengthy, but I would really appreciate some input from those with knowledge like you guys....!
For at least a year now (probably more like 2), I have suspected I have SLE - but have never been brave enough to ask to be tested.
I’ve been to the doctors multiple times about the various symptoms I have, and the symptoms have always been put down to something else, or I’ve had various general blood tests for what they suspect the symptom might be, which they’ve always said have come back fine.
I have several symptoms... I don’t have the butterfly rash or any skin complaints, but I suffer with extreme fatigue, joint aches and pains, intermittent pains in my abdomen, back and chest, depression, night sweats, weight loss (or rather inability to gain weight, despite eating like a pig!), terrible headaches (daily), mouth ulcers, persistently low ferritin (but normal haemaglobin)... I also had some raised anti B2gp1 antibodies following the birth of my daughter in 2017 (on two occasions, 12 weeks apart) but Antiphospholid Syndrome was ruled out by a Haematologist. I also have frequent hot flushes/low grade fevers, and my pulse is frequently raised (in the high 90’s/low 100’s)
I am actually medically trained myself, so I have been tested for all the ‘obvious’ potential causes like anaemia, thyroid function etc.. and they were all fine. I’ve also had 3 ECG’s in the last month due to my pulse, which I’m told were all fine (other than being ‘a bit fast’). Symptoms are always just passed off as other things (e.g. the tiredness is ‘because I have 4 kids’, the headaches are ‘stress’ or due to sinus problems, the ulcers and fast pulse are because I’m ‘stressed’ or ‘run down’.... I genuinely don’t believe it’s any of those things. I honestly just feel generally rubbish every single day
I had some chest pain (radiating to the centre of my back) and shortness of breath a couple of weeks ago - my pulse was also over 100 and my temp was slightly raised (37.9). It got so bad that I vomitted twice.
I had some bloods done then, including a D Dimer which was negative. My CRP came back slightly raised at 18, but was repeated the following week and was then normal. I had a chest X Ray which was normal, and I’ve got an abdominal ultrasound next month - and I’m sure that’ll come back normal too...
My feeling is that this episode was a potential ‘flare up’, but its not something I’ve ever had to that extent before, so I don’t know.
I’ve done my research and have compared 4 sets of blood results I’ve had done over the last 4 months. On the last set that was during that ‘episode’, my Lymphocyte’s were slightly low, my Red Blood Cell Distribution width was slightly high, and my bilirubin, although still within normal limits, was double what it had been on my previous 2 tests. Nothing was said by any of the doctors about any of these, but from the reading I’ve done, all of these (along with the slightly raised CRP at the time too), can indicate autoimmunity/inflammation.
My Creatinine is also persistently low.
Because of all of this, along with my symptoms, I plucked up the courage to ask to be tested for Lupus. I didn’t say anything about the bloods, I just asked on the basis of my symptoms and the GP agreed - so some bloods were taken for a Lupus Screen and Connective Tissue Disorder screen.
That was over a week ago now and I still don’t have the result (maybe they have to be sent away to be tested, I don’t know..). But I’m very anxious that these are all going to come back ‘normal’ and therefore it’ll be the end of the road. I still wont have any answers, and particularly about Lupus which I’ve almost convinced myself it is now.
If they do come back normal (ANA Negative etc), is there anything else I can do with regards to my symptoms and the other blood results described above, towards potentially getting a diagnosis..? I really am struggling with it all at the moment, particularly the tiredness and headaches, so I’m very worried that I’m just going to be written off and sent on my way if these Screening bloods came back normal
Thank you so much.
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MemmaJ
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Firstly I completely understand your need for clarity and your hope that your tests come back positive. I think most of us here will relate to the need for some certainty over mysterious and very unpleasant symptoms.
So, in the hopefully unlikely event that your tests come back negative - I think you might need to consider other types of rheumatic disease - which more often present as seronegative than Lupus does. Very broadly these would be Sjögren’s or Rheumatoid Arthritis or Vasculitis. The first two I mention are often attended by joint pain and can be seronegative in 25-30% of sufferers. Vasculitis would probably affect your skin and organs mostly.
Raised CRP is more commonly a sign of synovitis which is most associated with RA. In its early stages RA often presents systemically rather than as full on inflammatory arthritis.
There are other rheumatic diseases and autonomic dysfunction as a main condition and your symptoms could go with any of these as much as with SLE.
My own main disease is Sjögren’s and despite a positive ANA I had to have a lip biopsy to confirm. My eyes and mouth were dry but not so much that Sjögren’s occurred to my doctors ever as Lupus often did. My initial diagnosis was RA but this later changed when I developed small fibre neuropathy everywhere and autonomic dysfunction. The latter sounds like it could explain your heart rate changes etc.
I’m having a dreaded gastroscopy tomorrow and am really hoping the biopsies yield results for Coeliac because this would give me clarity. My friends and family don’t understand this but Sjögren’s is strongly associated with Coeliac and causes other GI problems for many so I would like confirmation as I’ve struggled with upper abdominal pain for so long now.
My doctors just put each condition i suffer from in a separate, non autoimmune compartment - which could be right but seems more than annoying, frustrating and coincidental to me!
Best of luck with the results and on getting clarity. 🤞🏽😊
Just to let you know that if the autoimmunity screening test is positive (the ANA - it's known as a cascading test), a whole raft of other tests for specific antibodies are done automatically by the lab...the one that's highly specific for SLE, the dsDNA, involves growing a culture in the lab, and this takes 3-4 weeks!
If they're negative, it doesn't mean you don't have lupus, or autoimmunity. The BSR SLE Guideline for lists all the criteria, 4 from 11 need for diagnosis (Table 5):
Why did they test you for the B2gp1? Please do not apologize for the long post. You have a lot of concerning symptoms. I think your doctor is concerned too. From what I have read they should not do ANA testing without high degree of suspicion for lupus. Even though the APS was ruled out, you do have associated auto-antibodies. I am not sure about this one, but anti-cardiolipin antibodies are taken seriously even in the absence of positive ANA. That was the case with me. I was later ANA positive. Not sure that will be helpful, but I would be surprised if at a minimum you would not be « watched » and re-tested. Totally understandably that you want clarity. Keep us posted.
Thank you so much for your supportive replies, what a lovely group of people..!
I was tested for clotting disorders in 2017 following the birth of my daughter because I had a placental abruption in labour with her (she’s fine, and will be 2 in May).
The anti B2gp1 antibodies were only slightly raised on both tests, so no-one was really bothered - just said I’d be treated as APS positive in future pregnancies only. I pushed for a referral to a Haematologist though as I was concerned, due to my symptoms and a strong family history of clots (both parents) - the Haematologist really wasn’t bothered though and insisted on repeating the tests again. Lo and behold, the antibodies came back normal, therefore I was discharged and that was the end of that...!
I don’t have a referral to a Rheumatologist, no... the bloods were only done last week and I assume I won’t get a referral if the bloods came back normal... In an ideal world I’d pay to see one privately, but unfortunately I can’t afford to.
That’s very interesting about the tests potentially taking 3-4 weeks to come back though, perhaps that’s what’s going on. My clotting tests previosly mentioned took weeks to come back too, but I believed that was because they had to be sent away as the hospital I was under didn’t perform those particular tests there.
I can’t work out how to add a picture here, but the ECG I had whilst having the chest pain.... the print-out said it was abnormal (sinus tachycardia, which I knew, and ‘ST and T Wave abnormality, possible inferior ischemia’ - however the paramedics and a doctor the next day said to ignore that, as their visual interpretation over-rules the print-out and they all said it was fine 🤷♀️
Hi Memmaj - sorry you are going through so much. I know how upsetting it all is. I just wanted to reiterate what eekt has said and encourage you to read the link to the guidelines. I take it your complement 3 and 4 are being tested, along with your white blood cells, specifically your neutrophils? If these are all low that could be significant. Also you could call Lupus UK to discuss your concerns with them - they helped me pre definitive diagnosis when I was very down. And they have an article on the website called Struggling to get a Diagnosis? Which is b helpful. Has anyone mentioned Fibromyalgia? There are distinct differences in this and SLE lupus obviously but it’s worth reading up about as can be very similar in some respects and is extremely dibilitating. I wish you speedy clarity - please do let us know how you get on. D x
Thank you, I have no idea what specifically is being tested - GP just said it was a Lupus and Connective Tissue Disease screen.. 🤷♀️
Fibromyalgia has not been mentioned, but I had kind-of ruled that out myself to be honest as the pains are kind-of my ‘smallest’ symptom, if that makes sense..? And I believe that’s one of the biggest symptoms with Fibro. I also don’t have IBS or anything like that.
I don’t know, it’s all very complex and frustrating. I’m just getting myself all worked up that these bloods are going to be normal and I’ll just have to ‘deal with’ all this forever
It sounds like your doctor is doing all the right things. You are not working yourself up. You have real concerns about real symptoms and want clarity. The good thing is your doctors do too. Have you mentioned your fevers to your doctors? The proposed new lupus criteria added fever as a criteria because they found that helped to differentiate between lupus and patients who mimic the disease (like fibromyalgia). Your tests will help a lot. But you are going to be complicated even if all are negative because you already have one antibody that is low positive. At least I think that is the case.
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