High Anti-beta2-glycoprotein-1 test r... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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High Anti-beta2-glycoprotein-1 test results - advice needed.

Spicer21 profile image

Hi,

I've just had Hughes Screening blood tests done via Medichecks. Everything was within range normal except for BETA-2-GLYCOPROT 1 ABS: IGG and BETA-2-GLYCOPROT 1 ABS: IGM. Both were just out of range high, i.e. both were 20 in a range of 0.000 - 19.990.

I believe that I should have these retested after 12 weeks.

What I'm wondering is whether they are high enough out of range to warrant retesting.

I'm also curious to know whether it is common for test results for both of these tests to 'mirror' each exactly, i.e. other in people's experiences?

I got myself tested as I have some of the symptoms that may indicate Hughes, e.g. livedo reticularis and episode of what I think might have been 'stomach angina' with my liver aching like billy-o during what my doctors are currently interpreting as being a painful gallstones attack, which struck me back in May this year. (I have since been referred to a surgeon re having my gallbladder removed as I have at least one small gallstone in my gallbladder and my gallbladder was retracted during a recent ultrasound scan, despite fasting for the test - which apparently indicates that my gallbladder isn't working properly and may be diseased. I see the surgeon this coming Monday 25th for the first time.) I also have some symptoms of SLE but all testing for that has proved negative.

Any thoughts and advice gratefully received, with thanks in advance.

Fielder

5 Replies

Hi,

They always retest within 12 weeks. I guess they were positive.

I have learnt that livedo reticularis is a sign of APS (Hughes syndrome). I have had that but also all three antibodies positive.

If the second test is also positive you must get an APS-Specialist as you also have SLE-like symtoms. Probably you will have a Rheumatologist as it is a rheumatological illness. But he must be a Specialist of this illness. Very important!

SLE, APS, Sjögrens and Thyroidea are all "cousins" within this family of autoimmun illnesses.

If i were you I would wait with that operation till you know if you must have some anticoagulation regarding your APS. I was worse after an Hyperparatyroidea-operation when I was only on baby-Aspirin and not anticoagulated. I have now Warfarin.

If you have to operate immediately then I guess you must do it. Tell the surgeon on Monday that you have probably APS and may clot.

Best wishes from Kerstin in Stockholm

Spicer21 profile image
Spicer21 in reply to Lure2

Hi Kerstin,

Thanks so much for your reply.

I will pay to have those two test done again in 12 weeks time and, in the meantime, I will tell the surgeon that I might have APS. (I think I will probably have to wait 18 weeks for an operation unless I have another attack and need an emergency operation.)

I have one of the 'cousins' you speak of, i.e. Hashimotos Thyroiditis!

If the retesting comes back as being positive I will go and see one of the APS specialists in London. I will let you know how I get on.

Thanks again - I really appreciate your advice.

MaryF profile image
MaryFAdministrator in reply to Spicer21

I am glad that some detective work is being done. MaryF

Best of luck I was told I had gallbladder problems and I probably did too but later on once diagnosed they discovered I had portal vein thrombosis and stomach aging after I had occluded mes enteric arteries

Hi TJstickyblood,

Thank you for replying.

Can I ask - did you have your gallbladder out and did you have gallstones? And how are you now?

And also did you experience any muscle problems elsewhere in your body in connection with the occlusion of your mes enteric arteries? (I ask this because after I had my stomach attack, I had horrendous muscle pain in my right outer thigh [plus livedo reticularis on my right knee] which made me bedridden for almost a month...and I've just read that occlusion of the mes enteric arteries can affect blood flow to skeletal muscles.)

Thanks,

Fielder

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