I have another question, amongst all my blood tests I've had recently I had the test for primary Antiphospholipid syndrome, I have copies of my results and the Anti cardiolipin is negative, no where can I see the result for the Lupus anticoagulant and at the top of each results page it says ' no lupus anticoagulant sample received '. At my appointment last week I asked the consultant if the Lupus Anticoagulant was ok and he said yes it was fine, I'm puzzled that he said this if I've not actually had it done! I was wondering whether if the anti cardiolipin Is negative then it's a given that the lupus anticoagulant will be too or is it important that this is done as well.
Thanks
Diane🌺🙂
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ExtremeDuvetDaze
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It is not a given. You can be positive to one, and not the other. It's possible the LA went to a different lab, or your doctor overlooked the missing test. Can you get in touch with your doctor to find out what happened?
Yes I decided to give the rheumatologist secretary a call in the end and she said she couldn't find the result either and looks like I haven't had it done, so she's going to get my notes out and put them in front of him to find out. I'm already not feeling too happy with this consultant, I think it's more likely he's overlooked it , if this is the case he shouldn't have told me it was fine!!
I think this is pretty negligent of your of your consultant. If he ordered the test in the first place, it needs doing and I can't understand why he'd lie about not having the results. Hecertainly doesn't seem concerned with instilling trust in anyone! The sooner you can see another one the better.
Hi Friars, I'm speaking to my GP tomorrow so rather than wait until I've had my injections I'm going to ask her to refer me for a second opinion now being that it takes months to get an appointment!
I'm also waiting for the consultants secretary to get back to me so watch this space..🤔
The Hughes Syndrome Foundation have a lot of useful information about the blood tests involved in diagnosing antiphospholipid syndrome - hughes-syndrome.org/about-h...
Thank you Paul this is really interesting, so all 3 tests need to be done so as not to miss out on a possible diagnosis for Antiphospholipid syndrome, my consultant clearly says in his letter that he is checking for Antiphospholipid syndrome with cardiolipin antibodies, beta 2 microglobulin and lupus anticoagulant. He's done the first two but definitely not the LA....I'm puzzled because from what I gather beta2 microglobulin is a tumour marker and it doesn't appear to be the same test as the anti beta2 -glycoproteins1 test as stated in this article, he didn't do this test ! unless I'm mistaken and missing something here I'm unsure as to why he would add the beta2 microglobulin as one of the tests for Antiphospholipid syndrome or for anything else!
I'm waiting to hear back from him but the secretary has just told me he's not in until next week!
I'm really starting to feel as though he maybe not that experienced with Lupus and associated conditions! I thought all rheumatologist's would be...!
Not all rheumatologists are very experienced in lupus and APS. Rheumatology covers a wide range of different conditions, so you often find that consultants will have an additional specialisation within that field, such as rheumatoid arthritis, osteoarthritis or lupus etc.
If you are unhappy with your consultant it may be worth asking your GP to refer you to somebody else for a second opinion. If you let me know what area you are in, I can provide you with information about any lupus specialists who may be nearest to you.
You did recommend someone in Haywards Heath to me the other day on another thread so thank you. My GP said she would refer me to another rheumatologist if I wasn't happy.
Btw I have just read that beta2 microglobulin can be raised in RA & SLE...so I take back what I said! but still I've only had one of the tests for Antiphospholipid syndrome...
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