Could it be Lupus?

[RabbitMum_1965]

I'm in my 50s, female. I have a history of miscarriage, pre-eclampsia and prem/low birth-weight babies. I was put on aspirin for my last pregnancy. 20 or so years forward, I now have auto-immune thyroiditis, wildly fluctauting bp, neck lumps, brain fog ++, extreme fatigue. I've noticed a 'rash' on my thighs recently which is spreading. It's exactly like livedo reticularis (on google images). I've always had cold hands.

(I'm fairly certain that lupus was mentioned when I had pre-eclampsia but did nothing about getting checked as my baby was tiny and I was concentrating on her.)

If I have positive thyroid antibodies but negative 'anti-dna', does that mean it cannot be lupus?

I hope I can get an answer to this as I also have a brain aneurysm, which I've read can increase in size + rupture, in patients with lupus.

[Redfox25]

Hi Newbie and welcome. I dont know huge amounts and I'm sure other people will help more but I do know that negative anti dsdna does not mean that it is not lupus. That's a lot of negatives! You can still have lupus even if you don't have anti dsdna. Anti dsdna is a useful marker but not essential.

[RabbitMum_1965 in reply to Redfox25]

Thanks Redfox25. I'll make another appointment with my GP. This ammo will help me.

[Jmiller623]

Welcome Newbie! Sorry you’re having a rough time. It’s hard to say if you absolutely have lupus without a positive dsDNA. Many of the people on the lupus forum have the exact same symptoms that you have and then some with negative dsDNA.

If you’ve had a positive ANA then a reflex panel should be run with a whole slew of other antibodies that test for other autoimmune disorders. If none are positive, many of us are deemed undifferentiated connective tissue disease (UCTD). This basically means you have tons of physical findings that are lupus like but no clear lab findings that clenches a diagnosis.

Of interest though....I also had livedo really bad when everything started. I am lupus anticoagulant positive. You should have this coagulation panel checked along with B2GP and cardiolipin antibodies. Given your history of miscarriage and what sounds like arterial insufficiency during pregnancies, antiphospholipid syndrome (APS) should also be considered. APS is also highly associated with thyroid problems.

To ease your fears, I also have an aneurysm right behind my eye. Unless it grows, they are leaving it alone.

Lastly, with livedo, I would ask for rheumatology referral. You have a lot of symptoms that sound like a connective tissue disease. Rheumatologists are best able to help you.

I hope you find answers. Keep us posted on any updates. Sending hugs your way. ❤️

[Treetop33]

Definitely check out antiphospholipid syndrome (Hughes Syndrome). It's often co-morbid with other conditions and can definitely cause many of the symptoms you describe (I have it, along with lupus). You test for it through three antibodies and it's managed through blood or anti-platelet thinners.

You've clearly also definitely got a thyroid condition, since you have antibodies. That is definitely treatable. You need a referral to a rheumatologist and endocrinologist.

Good luck.

[Paul_Howard Partner LUPUS UK]

Hi RabbitMum_1965 ,

Welcome to the LUPUS UK Community Forum. I hope that you find this a helpful place for information and support.

A negative 'anti-DNA' antibody result makes lupus less likely, but it doesn't rule it out. This test is positive in around 60% of people with systemic lupus erythematosus (SLE).

Based on the symptoms you have described, it would be prudent to be investigated for lupus amongst other autoimmune conditions. Another which would be particularly important to check for is antiphospholipid syndrome (APS), which other members have mentioned to you. You can learn more about this at aps-support.org.uk/ One of the antibodies in APS is called the 'lupus anticoagulant' which may have been what was mentioned when you had preeclampsia before - it is a common cause of that.

If you need any more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[KellyInTexas]

APS, Also known in the UK sometimes as Hughes Syndrome. There is a HU forum for it as well. Hopefully you will find it helpful.

Please google :

EULAR recommendations/ Guidelines for the Antiphospholipid syndrome 2019.

[RabbitMum_1965]

Thank you for your replies, everyone. I thought it could also be Hughes Syndrome because when the obstetrician said I needed to go on aspirin, he said (I quote what he said) - 'you have sticky blood'.

The problem is that my GP thinks it's all in my mind, despite the blood tests, signs and past history of miscarriage etc.

When I was scanned, I was told I had the brain aneurysm and also bilateral basal ganglia calcification. The hospital referred me to a neurologist to discuss headaches, memory problems and hand numbness. The neurologist said, after 3 minutes - 'you're symptoms of headache, memory issues and hand numbness are due to anxiety'. I was shocked as I'm a tough, hard-working female who's been working since the age of 21 and raised a family as a lone parent.

No-one can tell me what's caused the bilateral basal ganglia calcification (I think it's because of hyperparathyroidism which was picked up on blood testing but GP won't refer to endocrinology, because of the misdiagnosis of 'anxiety').

I've never had mental health problems other than bereavement reaction in 2013 when my mum died from a fatal brain haemorrhage. Can neurologists diagnose mental health disorders? He specialises in stroke.

I've never been in hospital other than when I had my babies. When I complained then, that 'something isn't right', I was ignored and told it was all in my mind. I ended up with pre-eclampsia and very nearly lost my baby.

[Jmiller623 in reply to RabbitMum_1965]

Sorry you were treated this way Newbie. You need a new GP and neurologist that has seen lupus/APS before. What you’re experiencing is all too common. I think we’ve all been told in its in our head once if not a thousand times. I had a EMT tell me I was having a panic attack with VTach/heart rate of 180 and straight blue arms/hands. There will always be docs out there like this. If they don’t know then they don’t treat, and they won’t admit knowledge gaps.

I’d definitely find a new GP. I don’t know how hard it is to do this in the U.K. Just simply say I need a GP that is more experienced in dealing with autoimmune conditions. APS is nothing to mess around with if you do have it so I’d be quite adamant and forceful with my wants.

Again, I’m sorry your docs aren’t hearing you. I’m sure some of the people on this forum can help guide you to some better experts in your area. There is also a Hughes Syndrome forum as well. A rheumatologist if not a hematologist would be really nice for you to see right now. The fact that they won’t refer you to an endocrinologist with signs of hyperparathyroidism is crazy....like really crazy. HyperPTism is also nothing to slouch about. It controls almost every organ in your body through calcium/phosphate regulation. Hang in there. We’re here for you!

[RabbitMum_1965 in reply to Jmiller623]

Thanks for the words of support Jmiller623. I'm going to write all my signs - blood tests, scans, rash etc, past history of miscarriage, pre-eclampsia etc and also symptoms, down in a letter and ask for it to be logged in my notes. I'll make a formal request for a referral to endocrinology and rheumatology but may have to see a more experienced neurologist privately. The waiting lists are awful here in the UK.

They don't seem to understand that I felt in good health from late 1990s when I had my last successful pregnancy (born 5 weeks early at 4lb in weight; I'd taken aspirin during this pregnancy) until early 2019. I'm not imagining it - something's not right.