Lupus anticoag results

[Dannii666]

Hi, I've had my first test result back for APS investigation and don't really understand it. Does this mean I have APS? Can anyone help? I cannot get a GP appt sooner than next Wednesday to discuss it😞

[KellyInTexas Administrator]

Reading through your past post and our last conversation, I feel it will be very important that your GP sends you to a Rheumatoligist that is very familiar with APS . This is where clinical experience is very needed.

Also, you will need the full panel, which includes the aCL and the B2GP1. ( I did not see those included, but maybe I missed it?)

I would ask now on this forum- post in which region you live, and what Rheumatoligist do you recommend for your area that has specific experience in APS.

[Dannii666 in reply to KellyInTexas]

Hi Kelly, I haven't had those tests back yet unfortunately, it's taken 5 weeks for this one to come back so hopefully they will be back soon too! Is it possible to still have LA in the average person e.g that doesn't have APS? I'm a bit shocked that it actually came back as positive, I've gotten used to tests coming back as negative lol.

I'm in the North East, Teesside specifically but can travel around the region if it means seeing someone who knows what they're talking about.

[KellyInTexas Administrator in reply to Dannii666]

It’s possible, yes. Literature will tell you that approximately 5% of the population will test positive to elevated APS antibodies at any given time.

However... usually a reason can be teased out. The geriatric population is note likely to have an elevated APS titre. This does not mean they necessarily have APS.

Certain drugs ( legal or illegal ) can cause a rise in antibidies. Certain anti epilepsy drugs, certain antibiotics, and cocaine are examples.

So most often this , “5%” of the population can be identified and accounted for.

Also, when taken into account that you are experiencing symptoms, and are ( if I understand correctly) demonstrating a livedo, I think personally the elevated LA ( or prolonged time) is something that does need to be carefully considered by a Rheumatoligist that has a breadth of clinical expertise.

[Dannii666 in reply to KellyInTexas]

The only meds I take are Levothyroxine and amitryptiline and I only started taking them 2 weeks ago so it can't be that.

Yes I have extensive Levido, it's actually changed in the last month I've had large patches which are red and more prominent than normal. (Almost like I'm too hot, except I'm not) It comes and goes but think it coinsides with how ill I'm feeling. The GP doesnt know why it's happening.

I will push for a rheumy appt, I had a borderline positive ANA test come back 2 weeks ago which was brushed off as the screen wasn't positive for SLE antibodies.

I'm wondering if the ANA could be somehow linked with all of this 🤔

[Dannii666 in reply to Dannii666]

I will create another post so I can show what I mean about my changed levido. I'll delete it afterwards

[KellyInTexas Administrator in reply to Dannii666]

Sure, its just part of the connective tissue auto immune mixed connective tissue disease profile. Bit of this, bit if that! All lupusy! All falls under that large umbrella of connective tissue disease. Which one is it? Could be a mix of them.

[Dannii666 in reply to KellyInTexas]

Wish there was a definitive answer. Still feeling terrible, I feel like I'm falling apart most days, but looks like I'm on the path to finally getting answers 😊 Thanks for your help x

[KellyInTexas Administrator in reply to Dannii666]

Your are welcome. You really need a good Rheumatoligist to answer all these questions and explain it properly and thoroughly. Not in layman’s terms, like I’m doing! I’m sure you will need more specific blood tests, and tabs will needs to be kept. These will be good base lines for you.

[Dannii666]

My clinical history isn't typical of someone with APS in that I've not had a blood clot or miscarriage (Haven't tried to get pregnant) but I have Levido Reticularis and a whole host of other health problems including Migraines, GI bleeding (Which is still unexplained) extreme fatigue, joint pains and Hashimotos disease.

An on the ball GP (Not my usual who said I had 'dead person skin') looked into it and decided it was worth investigating further as I've been so unwell.

I'm still waiting for the acl and B2GP1 test results. Hopefully they will be back soon 🤞

My main worry now is that if I am positive again, without having had a clot or miscarriage I'm just going to be left until if/when I do

[MaryF Administrator]

HI, test results are not everything, only part of the diagnosis, I do suggest you persuade your GP to make a referral to a recommended Hughes Syndrome/APS specialists, several on here, (under pinned posts), and on our charity website: ghic.world/ Try not to worry, like many on here I have had weak results, then stronger ones, they come and go, your GP and any consultant may suggest Aspirin. I really hope you get some answers. Many on here have the same dilemma. MaryF

[Ash0507]

I just have LA and I had a mini stroke in December , my doctor had me on warfarin which I was never stable on so switched me to clexane and wow I have my life back it's amazing how much it helps when you are struggling so much. Definitely push to see a rheumatologist

[Rulondag]

Yes