Lupus diagnoses

[Heidi2791]

Hi everyone today the Dr diagnosed me with lupus after my blood test came back positive. I have a couple of questions as the doctor is just training and didn't know that much about it. Is one blood test enough to give the diagnosis? I do have recurrent miscarriages, So that's why the test has been carried out. I only suffer from one or two of the symptoms associated with lupus. Also my white blood count is elevated, which I've also read isn't common with a lupus diagnosis. Is it possible that I have been misdiagnosed? Any help would be much appreciated. Thanks 😊

[Bacardibabe76]

Hi

Welcome. Is it possible the test you were positive for was lupus anticoagulant? This is a test they run when you do have misscarriages. It’s not actually a test for lupus, it’s an antiphospholipid antibody which is attributable to antiphospholipid syndrome also known as Hughes syndrome or sticky blood. It was first noted in lupus patients, hence the name But non lupus patients can have it too. I think the name should be changed as it confused patients.

I would ask your doctor for clarification.

L x

[Heidi2791 in reply to Bacardibabe76]

Hi thanks for your reply. Yes this could be possible. The doctor I have been seeing is maybe a bit inexperienced and I just left the appointment quite worried as he couldn't explain anything. He literally just said you have lupus and that was that, so it is possible it could be anticoagulant. I have an appointment in a few weeks with my fertility specialist who should have my results. I'm hoping he will be able to give me more information. To be honest I've had a terrible experience with this doctor so I don't entirely trust what he says. Thank you xx

[Bacardibabe76 in reply to Heidi2791]

Usually it takes a lot of tests and also meeting clinical criteria of symptoms too and a GP can’t diagnose.

From your post I would say it is liejely to be that. Look up antiphospholipid syndrome.

Was it your gp? I would ask for your test results and maybe ask to see a more experienced doc, that’s so naughty of him to say that to you and send you on your way. Makes me 😡😡. If it is the the lupus anticoagulant then they will retest you a minimum of 12 weeks after the first test, this is to make sure it is not an anomaly.

Good luck and keep us updated.

Ps there is a forum on here for it called sticky blood / Hughes syndrome.

L x

[Heidi2791]

Yes it was GP I've had so many problems with him. After he told me he went on to say do you know seal the singer he has lupus and the skin problem on his face is caused by it. Honestly I've had so many problems. I have absolutely no other symtoms of lupus either. I will be so angry and upset if this is the case, he knows I suffer quite badly from anxiety so if he has caused me so much stress and worry, I will be so annoyed! Yes, I will definitely you updated. I will also look up anticoagulant. Thank you so much xx

[Bacardibabe76 in reply to Heidi2791]

I really feel for you 😞. Poor GP, steer clear if you can.

He is not allowed to diagnose, but I would ask your receptionists for your test results or log in and get them. If he is wrong I would put in a complaint to the practice manager. 😡😡

Good luck 😀 x

[Heidi2791]

Yes, I will ring first thing. Thank you, I will let you know how I get on 😣 xxx

[Bacardibabe76 in reply to Heidi2791]

Good luck

[Bacardibabe76 in reply to Heidi2791]

Hi just remembered to say it it probably soon to be under your clotting test. So it will probably show that your APTT (partial thrombosis time) is outside range and then if LA is present it give give that reason. So it wont be listed as a LA test.

They may have done anticarduolipin antibodies too. These are other clotting antibodies. X

[Paul_Howard Partner LUPUS UK in reply to Heidi2791]

Hi Heidi2791 ,

Please let us know how you get on when you speak with the doctor. I would say it is unusual for lupus to be diagnosed based on one blood test and with no further referrals or treatment at this point.

If your main symptom is recurrent miscarriages then I think Bacardibabe76 's suggestion that it could be lupus anticoagulant is a good idea. You can read more about this at aps-support.org.uk/about-ap...

If you need 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...

[baba]

Have a look at the following :

lupusuk.org.uk/

healthunlocked.com/hughes-s...

The GHIC Website:. healthunlocked.com/api/redi...

Best wishes

[Heidi2791]

Hi just an update. Bacardibabe76 you were right! I rang this morning and the test that was carried out was Lupus anticoagulant. Thank you all so much for your help! I am going to be putting a complaint in about this doctor and changing surgeries. Thank you all so much! Xx

[Bacardibabe76 in reply to Heidi2791]

Hi

So glad to hear, I saw you had some similar answers on FB last night.

Hughes syndrome also needs to be monitored and you may require medication to ensure you do not develope clots.

Now they know they can treat you successfully when pregnant which should help you carry to full term. Please join the other group here that will also be of great support to you, I’m part of the group too as I have Hughes syndrome along with my lupus. They are a fab group.

You will probably be referred to a haematologist too.

I am so angry at that doc, just shows how even docs are clueless at times. Please keep well and good luck going forward.

Good luck with your complaint.

L x 💐

[Lilylupy]

Heidi... before I was diagnosed which was caught fairly early 3 blood work ups were done the last one I was sent to a rheumatologist, which your doctor should send you if he doesn’t know much about Lupus

[Heidi2791]

Hi everyone

Just a quick update. Spoke to another Dr today who confirmed the positive test was lupus anticoagulant and the doctor that told me I had lupus was incorrect! Thank you all for your help 😊