Newbie - Advice please

[thelady2003uk]

Hi, I'm new here and I have a quick question - I have suffered with fibromyalgia, hypothyroidism, COPD/Asthma, Vitamin deficiencies and various other things for years now and I have suspected for a long time that I might have LUPUS due to my symptoms and ESR, CRP, APTT and other blood tests. After begging previous GP's with no success to undergo a LUPUS test I recently asked my new GP to test me, he did a Lupus anticoag screening test and on the blood test form it says: DILUT RUSSELL VIPER VEN RATIO 1.25 reference range is below 1.20 so I was told that the result is borderline and the test has to be repeated in 12 weeks. I was on prednisolone at the time and I know that it affects blood tests so my question is: If I hadn't been on prednisolone would I still have tested borderline or would I have got a more definitive answer? Hope you guys know what I mean I'm having trouble putting what I want to say into words. Thanks a lot and have a good day!

[Paul_Howard Partner LUPUS UK]

Hi thelady2003uk,

Welcome to the site. I hope you find it a useful source of support and information. Unfortunately it isn't possible for us to say whether the results would have been more definitive or not if you weren't currently taking prednisolone. Did you discuss this with your GP to see what they thought about it?

[thelady2003uk in reply to Paul_Howard]

Hi Paul, Thanks for your reply, I was hoping for a more definitive answer but never mind I will have to wait for another 10 weeks till the next blood test. No I haven't spoken to my GP about it yet, I only found out because I had a call from the receptionist at the surgery telling me that the GP had asked me to make an appointment for another blood test in 3 months time as the result had come back borderline. Thanks again for your reply. Take Care

[AuntTea]

Did they do any other labs that day or just the viper venom? I'm not sure if prednisone would affect that test or not. Hooefully they did some other tests. You really can't get a diagnoses from the results of one test. Usually it's a bigger picture (meaning more results) to look at.

[thelady2003uk in reply to AuntTea]

Hello, Thanks for your reply, from what I can make out on my blood test print out they did Lupus anticoag screening test which underneath says Raised dRVVT 1.25 Raised repeat in 12 weeks.

APTT ratio was normal at 0.89 Ref range <1.20

DRVVT correction - satisfactory 13%

Note: A percentage >15% is suggestive of an inhibitor, however correction (<15%) cannot exclude the presence of an inhibitor.

Serum anti-cardiolipin level - all satisfactory

Se Cardiolipin IgG Ab level 2.00 - Ref <20.00

Se Cardiolipin IgM Ab level 5.7 Ref <20.00

TTG 0.80 ref <4.00

I had pancreatitis from an unknown cause (I don't drink) in 2006 and whilst in hospital they did an endoscopy with biopsies, they decided that I have coeliac disease even though my TTG has ALWAYS been negative. I cannot tolerate a GF diet - that's another long story!

My PV, ESR and CRP have been constantly raised for the last few years and I have confirmed hypothyroidism but I am unable to tolerate any levothyroxine, NDT or T3 due to allergies which I am going to get checked out at the allergy clinic in Southampton next week. I will also be showing them my blood test results for their opinion.

I have seen a Rheumatologist who said I have fibromyalgia but then said that I might have PMR so they tried me on steroids and I felt a lot better, but then I moved area and my new Rheumatologist said "No you haven't got PMR" and refused to give me steroids so now I am back at square one, hoping that the LUPUS test comes back positive because then I will get back on the steroids, which obviously is not a great option but when you are crawling on all fours just to get to the loo it's a better option that nothing. Thanks for your help. Take Care

[nanleighh]

Hi the lady 2003, it looks like they tested you for antiphospholipid syndrome, did they do an an ANA and auto antibody screen? Those are the standard test for lupus. You can have antiphospholipid syndrome and not have lupus and you can have lupus and not have antiphospholipid syndrome. Maybe with your complex health history they have already tested you for these things? I wish you the very best of luck in searching for answers I know this is a difficult process, And the problem is many physicians are not all that educated on auto immune diseases. Take good care, nan

[thelady2003uk in reply to nanleighh]

Hi Nan, Thanks for your reply, they didn't test ANA and auto antibody screen this time but I've had them done in the recent past and every time they have all come back negative. \very interesting what you say about antiphospholipid syndrome I will remember that when I go to see the Immunology/Allergy clinic next week. Thanks a lot for your help, and can I just say that based on my experience physicians are not very well educated in most things that are a little bit outside the box. I'm sure a lot of you guys on here will agree! Take care and thanks again. Shaz

[thelady2003uk in reply to thelady2003uk]

Hello again Nan, A quick question: my cholesterol has been going up over the last few years since my problems started in around 2008 (although I have not felt what you could call well for most of my life) before that it was normal it is now 46 and should be below 42 so it is climbing according to my blood test reference range. Do you know if this could this be related to antiphospholipid syndrome? I have just looked at the symptoms list and it fits me exactly. Thanks again

[nanleighh]

Hi Shaz, I'm not an expert on these diseases by any stretch of the imagination. I'm a nurse who happens to have lupus. Anti-Phospholipid syndrome from what I understand causes problems with blood clotting, it shouldn't have any effect on your cholesterol. Prednisone and other medications given to patients with autoimmune diseases however can increase cholesterol and triglyceride levels. I find that changing my diet to include lean proteins lots of fresh fruits and vegetables and staying away from sugar, gluten and dairy has helped me. It's all kind of trial and error with these diseases which I'm sure you have found. Hugs and the best of everything to you. Nan

[thelady2003uk]

Interesting about the steroids causing a raise in cholesterol, I've been on and off steroids whilst they tried to establish whether I've got PMR maybe that's what caused the rise in me, plus the fact that I've got hypothyroidism which causes your cholesterol to rise or so I've been told. Thanks ever so much for your help. BIG HUGS to you too. Take care!