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Hughes Syndrome APS Forum

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Possible connective tissue disorder - need some help in ordering the right blood test please

6 Replies

My Endo diagnosed me with Hashimoto's 3 weeks ago but she is concerned I have a connective tissue disorder - possibly the mixed type as I have Raynaud's as well as positive Hep2 ANA antibodies (speckled type).

I have asked Blue Horizon to give me details about what antibodies they screen for in the ANA test and the one I was looking for in particular was the U1-RNP antibody present in MCTD.

They test for: nRNP,Sm,Ro,La,Jo1 and Scl70 which are all part of the RNP/Extractable Nuclear Antibody profile.

Has anyone gone through Blue Horizon to be tested for U1-RNP antibody? I don't think my GP practice tests for this or even knows what it is!

Other antibodies that have been tested are:

Anti-Smooth Muscle Abs

Anti-Parietal Abs

Anti-Mitochondrial Abs

Ant-LKM Abs

Thanks for any help.

Jo xxx

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6 Replies
Manofmendip profile image
Manofmendip

Hi

Have you been diagnosed with APS/Hughes Syndrome?

We are not medical professionals and cannot advise you what blood tests to order, other than pointing you to the HSF website, where the tests for APS/Hughes are set out.

Dave

in reply toManofmendip

Hi

I have symptoms that suggest APS/Hughes Syndrome too, but not diagnosed.

Jo xxx

Manofmendip profile image
Manofmendip

Ok. Where are you from and who are you seeing about APS?

Dave xx

in reply toManofmendip

I'm from Bristol and currently under the care of an NHS GP. Jo xxx

MaryF profile image
MaryFAdministrator

If you are looking to be tested for Hughes Syndrome/APS your GP can easily do this, the tests you need to be done, are on the Hughes Syndrome Foundation website, you need to make sure you are looking in the right direction, as it may be that you have something else. The GP is the starting place for this. We can't dispense medical advice on here, only point you in the right direction for you or your medical practitioners in terms of reading, (the charity website) and or tests or professionals to refer to. MaryF x

Manofmendip profile image
Manofmendip

Hello Jo

As you are in Bristol I would strongly recommend that you ask your GP to refer you to Prof Neil McHugh at the Royal National Hospital for Rheumatic Diseases in Bath.

Also, we have set up APS West, a patients' support group based at the RNHRD in Bath and, if you send me a PM with your email address I will send you the notes of our last meeting, which also has details of our next meeting, later this month.

Best wishes.

Dave xx

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