Please help am frantic with worry.

[RowanAspenOak]

Dd is 17. She has been unwell for a while, gut issues mainly, but also exhaustion and her hair thinning a lot. She had a thyroid issue which resolved (Hashimoto’s diagnosis but no longer has antibodies and her levels are normal ) She had some bloods done to look for inflammatory bowel disease which came back negative, but she has tested positive for two markers for Lupus. I know someone with Lupus who is chronically unwell and can hardly go outdoors, and I am shaking with fright. My lovely girl. Dd doesn’t know yet that Lupus is possible (likely ?). She has had a tough time generally over the past few years and I don’t think she will cope with this emotionally, never mind physically. Looking online it seems that one marker is pretty specific for Lupus. We see a rheumatologist tomorrow.
Any help or advice ?

I have markers for lupus (some but not all) and have a diagnosis of lupus/undifferentiated connective tissue disease (UCTD). My diagnosis came in my mid 40s but I've had health issues from my mid teens. Lupus and lupus related conditions can vary from very mild to very severe. Is it the ANA that's particularly raised? Do you know what titre it is (e.g. 1:60 , 1:1280)? I take hydroxychloriquine which is a low impact one pill a day medication and is helpful. If she has antiphospholipid antibodies she may need some extra support if she is ever trying to conceive (probably taking a low dose aspirin to help reduce the risk of miscarriage). I have children with chronic illness and so I empathise with some of the feelings you are experiencing. I would try not to jump ahead, but if it does turn out to be a lupus diagnosis, allow her to grieve but also make her aware that there is good medication available and that it is not necessarily a disease which will impact on her life too much. Age 50, I do experience fatigue/headaches/mouth ulcers etc but it hasn't prevented me from having a high powered career in the past and raising a large family alongside voluntary work now.

Thank you so much for your kind words.
Yes the ana is raised but also anti dna, which seems to be pretty definitive looking online, but the GP said it is more ambiguous, and referred her to the rheumatologist. I don’t know her titres. She is away at university, and that makes it all even harder. She very much wants children so the stuff about infertility that I read was really distressing, aside from major organ damage, all the other frightening stuff. We were worried about a bowel disease diagnosis and not really thinking there might be anything else going on.
I don’t really know what will happen at the appointment, maybe more tests ?

I don't know anything about Lupus but if you aren't getting many replies here you could try seeing if there is a lupus fb group, someone might have asked a similar question there isle you aren't comfortable posting under your own name, or ask an admin to post for you.

Also maybe there is a lupus charity with a helpline? Perhaps you could call them?

Best wishes with the appointment etc

Thank you.
I feel so stressed that I don’t think I can cope with looking at Facebook tonight .
I suppose my questions are could she have this antibody yet not have lupus ,
and what is likely to happen tomorrow ? If anyone might know.

I think the rheumatologist may want to repeat her blood tests - that's certainly what happened with me. S/he will also want to take a history of symptoms, will look at joints for any signs of inflammation, look at any rashes etc if she has any. I would expect they would want to take detailed kidney and liver tests (so more blood tests and pee in a cup). It may be that they will want to start her on something like hydroxychloroquine to see if that helps with her fatigue etc, but they may want to wait until the tests come back to see if they want to start a more aggressive/specific treatment. It is entirely possible to have an elevated ANA (normally at low titres) and not have lupus or UCTD. The anti ds DNA does sound a bit more specific - I think I'm negative on this one so don't know so much about it - but it maybe that she is borderline/inconclusive on this test and there can be other causes I think. Lady Gaga is an example of someone who has tested positive for lupus on bloods but not reached full blown disease status.

I don’t have lupus but I do have end stage kidney failure on dialysis. I have been chronically ill for many years (was not much older than your daughter and still only early 40’s). I just wanted to say to take a deep breath and try to stay calm (easier said than done). Despite my problems, I love my life, am very happy and enjoy life in so many ways. You can live a fulfilling life with chronic illness and like pp said, it could be very mild and hardly effect her at all. Try to take every day as it comes, surround her with love and positivity and find ways to make life happy and meaningful in spite of any diagnoses. I wish her well.

If she has gut issues did they do a stool test? You cannot rule out IBD via bood test alone,

I think you mean that the ANA test was positive. Many unaffected individuals have a positive ANA. It's the anti-DNAase that's more specific to Lupus that some GPS don't do.
Agree that gut symptoms really need a stool (faecal calprotectin) test to diagnose ulcerative colitis/chrons etc. These gut autoimmune diseases can cause fatigue and hair loss. Fortunately we've come a long way in treating and managing lupus, so even if it is that, she's likely to have a long and fulfilling life. I know it's hard, but remind yourself that worrying isn't going to change anything, and you might not need to be worrying anyway.

Thank you everyone. Yes she did have a stool test too, as she has diarrhoea and bleeding, so we thought that it was a gut problem. The GP had ordered the ANA test, and because that was positive they tested for anti dna.
She doesn’t have a facial rash. Her main symptoms are the gut problem, plus fatigue and hair loss. Her feet hurt if she stands for long (though they look normal), and they swell up after a hot bath. Her legs feel tender, as though bruised. That has been happening for a long time, she mentioned it to the doctor a year ago when she had a bout of being similarly unwell, (that was put down to being on thyroxine while not needing it as confusingly she wasn’t showing thyroid antibodies any more, plus v low vitamin d ).
I know there must be an underlying issue. I am confused by reading online that anti dna is specific for lupus, but the GP saying it isn’t quite as simple as that. I suppose I am clinging to the hope in that ambiguity.
SandysMam thank you for your post, I am so sorry that you are dealing with illness, and I will think of your words tomorrow.

If she does have lupus please don’t panic. It’s a very varied disease; not everyone that has it has it to the degree it affects organs etc and if it does there are really good treatments now. I have lupus, Addison’s, hyperthyroidism, pituitary issues, sjorgens and asthma. It started with hyperthyroidism in my late teens and over the years I’ve collected more diagnosis (!) - I’m 42 now. I am lucky in that the main issues I have with lupus are fatigue and joint pain. I have tried several of the disease modifying drugs but don’t like the side effects so I just manage with painkillers (Tramadol and paracetamol) and I increase the steroids I take for Addisons which helps with the inflammation.

This Facebook group is good -

www.facebook.com/groups/lupussupportuk/?ref=sharewww.facebook.com/groups/lupussupportuk/?ref=share&exp=9594

Not everyone with lupus has any sort of rash. I don’t have any skin issues or the butterfly rash at all.

I hope it went ok OP

Sorry for late update - only got home last night. The doctor feels that although her antibodies are high, that she does not have an active inflammatory disease at the moment, and that all her other bloods looks fine. He thinks her symptoms are due to massive stress and general exhaustion, partly due to her previous thyroid problem.
So that was an enormous relief. I am still unclear on the longer term consequences of the antibodies though, whether progression to active disease is inevitable or not.
I liked the doctor a lot, he paid attention to my daughter, really looked at her and listened. He was very nice to her, reassuring and not patronising. I was wittering on a bit which I do when very anxious, so I wish I had stayed quiet. It is hard to try and convey someone’s whole history, health, experiences, temperament, in a short time.
So no medication needed.
Dd is very thin, and very tired, so I am still worried, but not anywhere near as worried as I was, at least for now.
I really appreciate everyone who took the time to post, thank you so much.

I'm really glad that your daughter found a sympathetic dr who listened and was able to reassure her and you on the blood work. I hope she is able to get some rest and recovery.

Great update, you must be relieved! Diarrhoea, bleeding, weight loss and fatigue are symptoms of inflammatory bowel disease such as ulcerative colitis or chron's disease. Did the GP specifically do a faecal calprotectin test? A general stool test looks for infection only.

I am pretty sure that was the test her GP did, as they were specifically looking for inflammatory bowel disease, but I will check just in case.
She has been through several very difficult and distressing things in a short time, she’s had a lot to deal with for anyone, never mind such a young person.

Doh. Name changed to protect dd’s privacy then forgot to change back before posting.

Ah that’s good news op. You say she is very thin though op, are you sure she’s not concealing an eating disorder?

I am thankfully not worried about her eating. She is a naturally fine boned and very slender person genetically. Because she had no extra padding to start with (she is a size 4, 22” waist) the loss has made her thinner than she should be. (The GP has been weighing her but she is visibly thinner anyway). She eats normally and and hasn’t ever shown any signs of being anxious about food or her body. She has most meals in the college dining hall as she is sociable and prefers to be with other people generally.
We have been back and forth to see her and we all eat together then, and she is her normal self around food. Temperament wise she is outgoing and confiding rather than private.
So nothing has rung any alarm bells. I have a younger daughter and they eat the same amount of food.
I think she just isn’t absorbing her food well as she has diarrhoea so often, and also running around more than she was at home, stress as well. She lost a bit of weight last Winter as her thyroid was overactive, but her levels are fine at the moment.