Update - one step closer! : Hello everyone Thankyou... - LUPUS UK

26,380 members22,261 posts

Update - one step closer!


Hello everyone Thankyou all for your support and guidance!

I’d just like to update everybody, I managed to get an appointment with my GP today, I was sent to the hospital to rule out a blood clot on the lung I had a blood test (Ddimer) which thankfully came back negative.

While I was in the doctors with my GP I showed her all the pictures of my face rash and the Raynaud attacks, she said I’d like to test you for something called “Lupus” especially because of the butterfly rash and the symptoms you are presenting with, in the back of my mind I was doing star jumps because finally the doctor was listening to me and not fobbing me off! I had 7 bottles of blood taken and I get the results in 3weeks time.

These are the tests Ive had done today -

D-dimer —Negative

Clotting screen

Erythrocyte sedimentation rate

Full blood count

Urea Electrolytes

Lupus anticoagulant screen

Rheumatoid factor

Finally one step closer to figuring out what’s going on! These next few weeks are going to be long waiting atleast I have my kids and Xmas to keep me busy!

Thankyou for the support xx

7 Replies

I am so sorry you had to go to the hospital. It is good they ruled out the blood clot, though. I have a feeling there were other blood tests they did. I hope they get to the bottom of your health problems. Keep us posted. Wishing you the best!

in reply to KayHimm

Thankyou yes I’m so glad it’s not a clot that was just to be safe so glad I went! What do you mean by you have a feeling there were more tests they did? Are those tests the right ones for me to have had ? I’m hoping some answers come out of these tests my neck gland is swollen still and painful so I’m thinking inflammation should show high or is that not how it works ? Thankyou for the reply! Will defo keep updating xx

in reply to Chaz1226

Your list just looked incomplete. It is nothing for you to be concerned about. Your doctor actually did more than the lupus screening. He included a complicated test that affects blood stickiness. That is good. It may explain your migraines. I am only saying there are others you may not have seen. Rheumatology testing is extensive and expensive. Did you mention your swollen neck glands to your doctor? To answer your question, there are general tests for inflammation and specific auto-antibodies that your doctor is testing and others. It should give clues about what is going on with you. Hard time, I know. Be patient. You are in good hands.

in reply to Chaz1226

This is ALL good, REALLY good news chaz. Just be aware that your blood complements levels should be tested (some patients, ie me, have C3+C4 deficiencies which fulfill one of the official diagnostic criteria for SLE...and if you’re seroneg like me, chronic complements & white blood cell deficiencies (lymphopenia in my case) can make up for negative results in all antibody tests when screening for SLE)

So glad you’re giving us these updates!

🍀🍀🍀🍀 Coco

Hi Kayhimm, Its a start but the testing your GP did are not really tests for lupus. The lupus anticoagulant sounds like a test for lupus but it’s actually a test for a clotting disorder. I hope they included an ANA because a positive ANA is needed for diagnosis as well as meeting the criteria of symptoms. Once the ANA is positive then testing for other auto antibodies is done. There are excellent pamphlets of information you can download from this site that explains all of this. I know it’s frustrating having symptoms and no diagnosis. Most everyone on this site has been where you are. If you can request referral to a rheumatologist that would be the best physician to make a diagnosis of an auto immune disease. I hope the doctors listen to you and you get to the bottom of it all as being in limbo is not fun. Remember we are all here for you. I would say keep a log of all your symptoms as well as photos of any rashes. Warmest regards, Nan

in reply to nanleighh

I think you meant this for Chaz. I told her the same thing. It looks like she is seeing only part of the tests that were done. It does not make sense that she did not have the ANA tested. The lupus anticoagulant is part of the diagnostic criteria. So I would say it is as much a test for lupus as the other specific antibodies. She has had migraines and they were concerned about a clot.

Glad to hear you're finally getting things done ! Now try & put it to the back of your mind and enjoy Christmas with your children 🎄🎄

You may also like...