I am an embarrassed GP who has never heard of Hughes syndrome.

[KimLewis]

Hi

My mother is in ICU post PE, Her Cardiolipin IgM is very high. She has had 3 miscarriages, severe migraines with aura and sister who also had a PE. 

I am a GP and insisted on a DDimer on admission, which after a circulatory collapse in High Care lead to prompt intervention, thank God.

Her work up is clear except for the above.

I know nothing about this syndrome☺️.

However I am wondering if I may have it too. I had severe eclampsia with transient hemilateral loss of vision, have migraine with aura, recurrent vertigo and severe fatigue.

Recently I have been diagnosed with CRPS following an ankle injury. Is there any link?

I am at sea with where to go- blood tests are easy for me to arrange but which specialist do I see? Would treatment perhaps improve my pain? How can I prevent massive PE like my mom had? I have two teenage children and would hate to have a stroke or another catastrophic event.

Thank you for reading this long message and your help.

[MaryF Administrator]

Hi there firstly are you located in the UK? it not will still endeavour to help you swiftly.  MaryF

[KimLewis in reply to MaryF]

No I'm in Cape Town, South Africa

[MaryF Administrator in reply to KimLewis]

Ok well as well as the D Dimer, of course these three tests are done. hughes-syndrome.org/about-h...   They are time sensitive the samples taken!  So do them where the testing takes place fairly swiftly.  Also check your Vitamin D, B12 and iron, plus  Thyroid panel. Also test for Lupus.  I urge you to have  a good look around the charity website, here are some exerts:  hughes-syndrome.org/about-h...

Professor G Hughes often describes the trio of disease which is Hughes Syndrome, Sjogrens and a Thyroid problem.

hughes-syndrome.org/about-h...

I also enclose this, as there have been lectures out your way:      apls.freelinuxhost.com/html...

samj.org.za/index.php/samj/...

youtube.com/watch?v=V3J8BLk...(Not working as expected?)

The last patient's day St Thomas' Hospital London:     youtube.com/playlist?list=P...

It is common at times for this disease to run in families, some other relatives may have different autoimmune conditions or a thyroid problem!  

Also I suggest you write to The London Lupus Unit and ask Professor Hughes if he has any recommendations for colleagues in your country as lectures and conferences to take place all over the world: 

  To Professor Graham Hughes:     [e-mail]

Contact The London Lupus Centre

Address:

The London Lupus Centre

1st Floor, St. Olaf House

London Bridge Hospital

27 Tooley Street, London SE1 2PR

I have given you quite a lot here to digest.. and also on the charity webiste (links above, lots of useful information kept up to date on the site! are many books, they are bought by both patients and medical staff.  Come back to me/us if we can help further.    MaryF

 

 

[MaryF Administrator in reply to MaryF]

This may also yield some results:   prodder.org.za/civicrm/cont...

MaryF

[MaryF Administrator in reply to MaryF]

One final point, some of us end up on just Aspirin, others in the main on some sort of anticoagulant and in addition for some Plaquenil. MaryF

[KimLewis]

Thank you so much. I am hypothyroid on Eltroxin, but will arrange the tests suggested. I will read and digest and then see where I go.

[MaryF Administrator in reply to KimLewis]

 am hypo thyroid as well, and often the TSH as you probably know does not reveal the correct picture, alongside the TSH I do these tests regularly: thyroiduk.org.uk/tuk/testin... I also never let my vitamin D drop below 75 and keep an eye on my levels of B12 Iron, like many on here I have a whole spectrum of disease including Lupus, Sjogrens, Steven Johnsons and Psoriatic Arthropathy. I am on Natural Desiccated Thyroid which is hitting the spot. Prof Hughes will reply to you if you write to him on that address! MaryF

[Manofmendip]

Hi

I fully agree with my colleague, Mary's, advice to you.

I am sure you will be 'flying the flag' for APS in RSA now.

Best wishes.

Dave

[KimLewis]

Thank you. I certainly have a few patients to follow up and investigate 

[MaryF Administrator in reply to KimLewis]

As well as Hughes Syndrome , APS and Antiphospholipid Syndrome, some medical staff across the world know it 'if' they know it at all as.... Sticky Blood!   MaryF

[Lure2]

Hi,

I also agree with the very good advices Mary has given you.

I had also neurological symptoms like you to begin with. The hospital here in Stockholm started me on 75 mg of Trombyl (Baby-Aspirin) and that helped for some time but when I was worse I had to take Warfarin which has been my lifesaver. I selftest now.  

We have too thick blood and urgently need anticoagulation. At a steady and rather high level. I have an INR of 3.2 - 3.8 and feel best at 3.8.

Best wishes from Kerstin in Stockholm

[Ozchick]

What a refreshing post!  Much better an embarrassed GP who is willing to learn than a dismissive one who tells you "It's all in your head"!  Better still-when you learn about it-don't keep that knowledge to yourself I hope all the patients with APS around your area hear about you.

[KimLewis]

Thanks for all the information and support. My nurse has taken my blood as well as the office managers blood- her mom has had 2 PE and she has arthritis and had eclampsia. 

[MaryF Administrator in reply to KimLewis]

With the miscarriage and still birth side of things in mind, here is a recent debate from House of Lords in the UK  publications.parliament.uk/...

and here is the entire charity website, obviously I did highlight a few links:  hughes-syndrome.org/

MaryF