I have not been diagnosed with Lupus but my migraine specialist strongly suspects I may have it. She ordered tests last year and they all came up negative. I have investigated the symptoms of Lupus and I have so many of them I am struggling to see how I could not have it. I've had a lot of the symptoms since I was a child and some which have been more noticeable since I had my son. I was 35 when I had him and am now 57. I've been struggling on and off all this time. I stopped going to my GP because I felt like I was going mad with all the things that are wrong with me. Recently I have been back to my GP who has ordered more blood tests but I strongly suspect they will come up negative. My question is, could I have Lupus and yet it not show up in the blood test?
Does Lupus always show in a blood test? - LUPUS UK
Does Lupus always show in a blood test?
I don't know, but poor you. I hope you find some answers soon.
Hello chezchat & welcome
It's great you found our wonderful forum...I've been here 6 years since my diagnosis process got started....this forum has made it much easier to understand & cope
You've been having a really tough time. Hopefully things will begin to improve soon
Have you visited the Lupus UK website? Cause it's full of good solid information. Here is a link to Lupus UK's diagnosis page (including listing of some of the relevant blood tests):
many of us find that blood test results can often be somewhat confusing, while other signs & symptoms strongly indicate lupus or one of several cross over conditions, e.g. Mixed Connective Tissue Disease or Disorder (MCTD) or Undifferentiated Connective Tissue Disease or Disorder (UCTD).
So, if you continue to be told your blood results are neg for lupus, don't give up hope...instead request referral to a rheumatologist with special experience of immune dysfunction & connective tissue disorders....Lupus UK can help you find the right clinic
Here is a link to Lupus Uk's publications page, where you'll find a leaflet on Lupus & Mixed Connective Tissue Disease:
Take care
🍀🍀🍀🍀 coco
PS if you show your GP the expert article on MCTD & UCTD in this link (below) this could help your case for referral to a more expert Rheumatology clinic:
My story is so like your's I came on to ask if there is a certain blood test I should get done and saw your post first thing. Butterfly rash on face from at least 26yrs ago when I had my first child ,comes and goes. Pain , fatigue from, about 20 yrs old, mouth uclers, bruise easily, hair has fallen out in handfuls a few times over the years. I was admitted to causaulty back in for a suicide attempt in 1996 and a doctor spotted the rash, wasn't as pronounced as it does be now, attended a clinic for about a year being investigated for Lupus, discharged and told to get refered back should I feel ill again. Gp wouldn't refer me back. I do have other autoimmune diseases. Now 57 years old. and at my wits end. I'm not looking to be diagonised but at the same time would like to be able to rule it out for definintly . Not one of the GPs has ever said what the rash is. I feel for you it is tough feeling so ill and not knowing why. I'm sorry do not mean to take over your thread had thought about starting a new post but the stories are so alike.
Best wishes x
Hi Tobie...I'm now 63... took the NHS 30 years before my version of immune dysfunction was recognised.....finally 6 years ago a brilliant rheumatologist figured me out...now I'm on daily lupus meds & feeling better than I have since my 20s. So I went through great distress & relentless debilitation for many years and I'm vvvv much feeling for you. Maybe you read my reply to chezchat (see above in this thread). Anyway, if you read the 3 links in my reply, they may help you get through to your gp 🍀🍀🍀🍀 coco
Thank you Barnclown I will print these links of though I gave up a long time ago about trying to get through to my Gp the previous one now not practicing and the now present one just as bad, all I was handed was a cream can not remember the name and then a dermatologist gave me Protopic . I have recently started to take photographs of my face rash. Thinking of asking practice manager to include one of the photos in my notes for the next time I get to see a Rhumatologist. I went to see him about my Arthrithis and did not have the rash on my face at the time and did not dare to broach the subject as Gp made me feel foolish.
Regards x
GRRRRR: GPs who make us feel foolish are foolish themselves.
Yes, do take photos! My lupus clinic chief asks us to bring photos of any visual symptoms we can to clinic
Take care
🍀🍀🍀🍀😘
Barnclown I went for private blood tests on the advice of the wonderful people on Thyroid UK here and finally got on treatment for Hypothyroidism. I've just looked at the first link and do have a lot of the smyptons but I do also realise that other diseases have some of the same symptons. It is interesting that I have suffered from joint pains since I was in my 30s and it is in the joints both sides of the body, which I believed to be arthtitis but was also felt that doctors were disablieving the extent of the number of joints involved. Swollen legs and ankles at 25 and given water tabIets. You have given me food for thought.
Thank you
Hi Tobie. Interesting about you getting protopic for your rash. I had exactly the same thing. I was sent for allergic testing and was allergic to absolutely none of the 120 substances they put on my back. Was then given protopic and it did absolutely nothing. I use a hydrocortisone e cream and have been using it for years. I just struggle to understand why someone doesn't put all my symptoms together and take me more seriously. Hopefully we will eventually get an answer. X
Chezchat my Gp had me on hydrocortisone for years for my face I couldn't remember the name but when you said it I remembered. A Dermatologist gave me protopic for my face. As for the rest of my body well I have wide spread Psoriasis. I have discovered recently though my Face rash will come and go with me only using dermol lotion to clean and moturise my face.
Have you been to a Dermatologist for your rash ? I have never had any allergy testing. Yes I do hope we get some answers sadly a lot of these autoimmune diseases have a lot of the same symptoms so that can take some searching through some mucky waters.
Yes Tobie, I did have allergy testing and I was allergic to nothing. Mostly my rash is around my wrists but it does come up on my face sometimes. It is often there first thing in the morning and wears of during the day. Most people just think I have a rosie complexion.
Mine stays for days weeks on my face, I do not never actully toke note, maybe I should and it goes from being faded to bringht red and not only do I have it on my face, over the bridge of my nose but it has tails up over my eyebrows. I also have parts that go behind my ears but supose thats Psoriasis.
It's interesting for me to hear that others are in the same boat as me. I work really hard to manage how I feel to enable me to work. All my time off work Is spend resting just so I can be fit for work again. I feel like I have no energy to anything any more. However, I can also go through times when I feel great and do lots. I also suffer from hemiplegic migraine which is controlled with HRT and I definitely cannot function without the HRT, I've tried. Some of the things I read about Lupus suggest that HRT makes it worse. I really do sometimes feel I must be mad or unhinged. I try so hard not to focus on it and get on with my life. But the truth is is just feel there is something wrong and I want to know what it is.
Hi Chezchat,
We know our own bodies! I'm in a similar situation and all I want is some answers. Keep on asking questions and if you're not satisfied then change - that's what I've learned off here. It isn't unreasonable to want to know what's wrong, I Mean, if we took our cars onto a garage and they found nothing wrong when you know your brakes are faulty - what would we do? Definitely not hope for the best, we'd seek out a second opinion. That's where I'm still with my GP.
Good luck with finding someanswers-keep in touch!
Charlie xx
Thanks Charliebear68. I wouldn't wish this on anyone but it does help to know,others are the same. I'm sure my GP thinks I am a nuisance but I am gonna keep going till I get an answer.
Chezchat you remind me of the way I felt even at 22 yrs old I worked and could also sleep the clock around at times. Even at that young age I felt that there was something wrong but everything was put down to depression. I do hope what you get some answers to what it is, I do believe we have that gut feeling when all is not right. Hang in here this is a good place to be I've got such suport and good advice.
Regards x
My rheumatologist has one sero negative Lupus patient who was diagnosed with SLE only after a kidney biopsy showed she had lupus nephritis. So it can occur but seems quite rare. They do seem to need another 'marker' before they will diagnose.
Unfortunately, yes. There are other problems that may test negative also. I wish I had a better answer for you, but I just don't know. I can say with certainty that many Lupus sufferers do end up with an array of other disorders. It's always nice to have the validation of test results, but it doesn't always happen. Hang in there.
Update on this subject. I have been back to my own GP and she has referred me to rheumatology. So, after suffering these things for so long and just putting up with things and trying to manage for myself, once I highlighted it to my GP she has immediately referred me. Why didn't I go before? To be honest, I have suffered these things for so long I just thought it was normal. I'd never told anyone how I feel until now. So, I am now in the process of writing a list of all the things that affect my. The bloods I have had done are normal but GP said there are a lot more tests that would need to be done and the bloods are not conclusive.
I don't want to have Lupus but if I have I want to know. Especially for my work situation to help with the time I have off sick. I have been diagnosed with hemiplegic migraine which is a disability in itself. I've had that since I was 14 years old and finally got official diagnosis at 56 years old. I hate going to the GP, I get so nervous, so I just manage for myself.
Well, now I have to continue to pursue this one. Hopefully eventually I will get an explanation for all these things I struggle with.
Blood test results
Lupus Anticoagulant and Anti cardiolipin blood tests...
Blood test results: investigation Lupus/Mixed Connective Tissue Disease 
Does this sound like a lupus flare?
Bloods sent away to test for Lupus. Been put on Pregabalin. Worried about Sjorgens. Any advice?
