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What is the test in USA for Antiphospholipid Syndrome (Hughes)?

Peyt

Senior Member
Messages
678
Location
Southern California
Hi,
Does anyone know the name of the test used in USA to detect Hughes Syndrome (Antiphospholipid Syndrome)?
Would a ANA (Antinuclear Antibody) be a good test for diagnosing this disorder?
I know in UK they have better tests but I am not seeing much testing info
in requestatest.com for antiphospholipid antibodies. Requestatest usually has all the available tests on LabCorp and Questdiagnostics in USA.

Thanks
Peyt
 

Gingergrrl

Senior Member
Messages
16,171
@Peyt I had this panel done prior to IVIG (just to make sure I was not a blood clot risk) and I believe it was actually called the Anti-phospholipid or Hughes Panel just as you stated. An ANA titer would not give you this information. The Panel I had was comprised of multiple different tests and in my case I was negative on all of them which didn't surprise me b/c with MCAS, your blood is often thinner and you bruise easily vs. having clotting issues. Are you doing it b/c you suspect a blood clot?
 

Peyt

Senior Member
Messages
678
Location
Southern California
@Peyt I had this panel done prior to IVIG (just to make sure I was not a blood clot risk) and I believe it was actually called the Anti-phospholipid or Hughes Panel just as you stated. An ANA titer would not give you this information. The Panel I had was comprised of multiple different tests and in my case I was negative on all of them which didn't surprise me b/c with MCAS, your blood is often thinner and you bruise easily vs. having clotting issues. Are you doing it b/c you suspect a blood clot?

I have been getting headaches for over 20 years and it's getting worst... The interesting part is that when I take a blood vessel dilating drug or supplement the headache gets better where as if I take a blood vessel constricting drug such as Excedrin(which is suppose to be for headaches) it gets even worst... Also, my mother had 3 miss-carriages before she was able to have me (thinking the gene may have been passed on to me) and ever since I was born I had nose bleeds and blood in the mucus.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @Peyt,

This may be useful to you, results from an antiphospholipid syndrome screen:

upload_2017-4-4_23-29-56.png


Ryan
 

ryan31337

Senior Member
Messages
664
Location
South East, England
It's an autoimmune disease, so would assume rheumatologist?

I foolishly played armchair doctor & rolled the dice on a blood screen for this. Strong family history of blood clots, miscarriage, migraine etc. I had read the account of the guy from Microsoft that had discovered APS as the cause of his 'CFS' and thought, hmm maybe! Sadly not.
 

Peyt

Senior Member
Messages
678
Location
Southern California
It's an autoimmune disease, so would assume rheumatologist?

I foolishly played armchair doctor & rolled the dice on a blood screen for this. Strong family history of blood clots, miscarriage, migraine etc. I had read the account of the guy from Microsoft that had discovered APS as the cause of his 'CFS' and thought, hmm maybe! Sadly not.
How are you feeling now? Are you getting any treatment?
I have heard that a simple baby asprin can heelp this issue... does that sound right?
 

ryan31337

Senior Member
Messages
664
Location
South East, England
How are you feeling now? Are you getting any treatment?
I have heard that a simple baby asprin can heelp this issue... does that sound right?
I'm doing much better now thanks @Peyt.

At the time I tried baby aspirin, no effect. The breakthrough for me was having a doctor recognise unstable blood glucose and reactive hypoglycemia. This explained away many of the typical low-grade APS symptoms of migraine, memory/cognition, fatigue etc. I also had POTS confirmed which explains away other potential APS stuff like dizziness & blotchy skin (livedo reticularis). Treatment for those has reduced these symptoms massively. Additionally I discovered that much of my family (and myself) are positive for Factor V Leiden.

It was a good lesson for me to appreciate that many symptoms are non-specific. Even if you appear to match the list perfectly it still doesn't equate to much! Its difficult when you are desperate, especially when overly enthusiastic doctors/researchers claim that their condition is mega under-diagnosed and the root of all evil etc. etc.
 

Peyt

Senior Member
Messages
678
Location
Southern California
@Peyt Do you think you will be able to have this test done? I hope you can find the answers that you are looking for and best wishes.
thanks for your good wishes Gingerrl,
requestatest responded back saying they are not going to offer this test... I guess I will wait until May to see my Doctor
and ask him to order this for me... meanwhile, I don't want to jinx myself but it's been 4 days that I have not had any headaches... The only thing I have been doing differently is I am taking some Cod Liver Oil everyday... I started taking it for a complete different reason but it is actually helping my headaches! I looked it up and besides the Retinal and Vit A , Cod Liver Oil is considered to be a natural anticoagulant(same applies to Evening Primrose Oil). I don't want to get too happy too fast but if I don't get a headache for another 3 days, it would be a record! :)