Results back: Ok I'm confused my first... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Results back

falling2peices profile image

Ok I'm confused my first test was LA positive and from one lab my second test is completely different and from another lab here's the second seems now a PTT LA screen is high. Is this usual to get 2 types of tests and did me starting aspirin effect this second test my dr has no information for me she don't even know what APS is.

CARDIOLIPIN AB (IGG)

<14 <=14 (GPL)  

No Historical Data

CARDIOLIPIN AB (IGM)

<12 <=12 (MPL)  

No Historical Data

CARDIOLIPIN AB (IGA)

<11 <=11 (APL)  

No Historical Data

LUPUS ANTICOAGULANT

see note  

No Historical Data

PTT LA SCREEN

44 H <=40 (sec)  

No Historical Data

DRVVT MIX INTERPRETATION:

Not Indicated  

No Historical Data

DRVVT SCREEN

37 <=45 (sec)  

No Historical Data

B2 GLYCOPROTEIN I (IGG)AB

<9 <=20 (SGU)  

No Historical Data

B2 GLYCOPROTEIN I (IGA)AB

<9 <=20 (SAU)  

No Historical Data

B2 GLYCOPROTEIN I (IGM)AB

<9 <=20 (SMU)  

No Historical Data

75 Replies
lupus-support1 profile image
lupus-support1Administrator

You really need to speak with your rheumatologist about the meaning of these lab tests.

The immunogobulins ie IgG IgM IgA are often "abnormal" in people with SLE. A haematologist should be referred if they are abnormal. Usually the IgA is "normal". They cannot tell you why they may be abnormal in some patients because they don't understand their functions in autoimmunity.

If it is any help, my immunogobulins are "abnormal" because I have SLE.

They can only be read by your rheumatologist/haemotologist.

The Lupus Anticoagulant is a very confusing name because it is not a blood test for lupus (SLE). It is a complex clotting test for those with the anticardiolipin antibody (Hughes) syndrome. This is not the only blood test for this condition. Sometimes this test will be negative and the other tests positive, which can confuse doctors, who are not experts. Blood tests can and do change, which is why these tests are repeated; and a single blood test is not sufficient for a diagnosis.

Of more importance are your clinical symptoms.

The short answer to your question: go and talk to your doctor and concentrate on your clinical symptoms.

With good wishes,

Ros

Thank you but why I'm confused is because this was supposed to be my second test to confirm or not confirm APS but a completely different test was done this time. But I see what your saying thank you

MaryF profile image
MaryFAdministrator in reply to falling2peices

Yes, do talk to your rheumatologist and I am sure that also, Lynn will come on and have her expert opinion also, these tests, and there are three of them, are well described here: londonlupuscentre.co.uk/hug...

MaryF

falling2peices profile image
falling2peices in reply to MaryF

Thanks mary

The test needing to be done again is the lupus Anticoagulant test. I can't see either result here? The APTT is another but both must be done.

falling2peices profile image
falling2peices in reply to Puska

That's what I'm saying I think they did the wrong test right?

falling2peices profile image
falling2peices in reply to Puska

This is my second test

Thank you for taking your time to help me I'd been lost with out this site

I se now thank you

Yes ma'am that's correct

🔄🔁🔄

What's that mean lol

Round and round we go

Lol good one now I'm the one learning

Doctors don't explain things to you even when asked. Hidden is great for breaking it down into simple terms for us

Yes she is

Hi, So good that APsnotFab had the time to answer your tests.

I have also LA (Lupus Anticoagulant) positive. I know you have had balance-issues as from your previous post here some time ago.

Please read that answer as I think you should try with baby-Aspirin (75 - 100 mg is enough)!

I know some of my neurological symptoms (balance and middle/innerear-issues were one) were first treated with Aspirin but when I saw that Professor for it he suggested that i should start Warfarin. Probably Aspirin was not enought for me at that time. I had micro-emboli and they were so tiny that they were not seen on a Scan.

It is good with this site that as we sometimes have the same symptoms we can help eachother to "go direct" on it and see a Specialist who knows this illness and what comes with it (symptoms etc).

Dave is also an expert of those balance/ear-issues but he has taken a pause for the moment.

I think you should start Aspirin if you not already have done that and look for a Specialist as soon as possible!

Best wishes from Kerstin in Stockholm

Lure2 profile image
Lure2 in reply to Lure2

Dave = Manofmendip

Kerstin

falling2peices profile image
falling2peices in reply to Lure2

Thank you very much all of y'all have been so kind and very informative pretty much invaluable to me on this journey I was lucky it was a short journey because of y'alls guidance and info I was able to get my test the first time I asked because I knew the facts and dr couldn't argue with that plus she had no clue what APS was. I did in fact start the aspirin back this past week cause I kept getting pains in my legs and bruises popping up after the pain with no injury. I've noticed in my opinion my livedo has gotten a little better and that I'm not freezing as bad as I was I'm not sure if it's from the aspirin but I'm glad for it lol. So looks like I'm here to stay and look forward to all the information y'all have and passing it on so more can learn about APS so many here(in the states) haven't even heard of it... scary

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

Where are you from, southern girl? ( I hear a fellow southern gal, with your " ma'am and ya'll!) I can maybe help with docs if I know where you are.

I was bruising easily too before I started medications. ( Coumadin) your platelets might be off.

Memphis tn but born kingsville Texas lol

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

I knew I was hearing a well mannered and well raised Texas girl by the way you were Talking to APsnot Fab!

"You done Yer mamma and lone star state proud!"

Lol!

Ok. No idea about docs In Tennessee .

Why thank you 😊 ma'am my momma is definitely a good teacher she still calls everyone sweetie and honey lol. It's great to meet you . And the doctors here so far are clueless but thankfully I have yall behind me now who aren't clueless at all I think y'all are pretty amazing it's inspiring to see so many going full force to make sure their health is treated properly I hope I catch on to that :)

Lure2 profile image
Lure2 in reply to falling2peices

Wow! ....... you have found someone already in the US to help you get that IMPORTANT Specialist! Kelly in Texas knows a lot!

Kerstin in Stockholm

falling2peices profile image
falling2peices in reply to Lure2

I sure have and I believe she found me lol

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

You're welcome, sugar!

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

We are going full force to make sure EVERYONE'S health is treated properly! Always paying it forward. It's extremely important in places like Texas ( and you may find Tennessee , I'm not sure yet, ) to go the extra mile with this Hughes method knowledge. I would call the university of Tennessee and ask if they have a hematologist department. Is there a university medical school there? Where do you have a university med school? Start there.

One of the rheumatologists I used to see moved to Tennessee when her husband was transferred over there (he's a surgeon) and she's very knowledgeable about APS and has a wonderful bedside manner. She was at Beth Israel in Boston and has probably been over there for at least 10 years. I would recommend if you're in Tennessee to give her a try: Susan Faye Kroop, MD

Assistant Professor of Medicine; Vanderbilt Rheumatology

1301 Medical Center Drive

Nashville, TN 37212

Thank you

New pic!

Yes ma'am

Lure2 profile image
Lure2 in reply to Wittycjt

Hi Wittycjt,

What is "pic"?

Remember I am from Sweden and not everyone from England or the US.

Kerstin

falling2peices profile image
falling2peices in reply to Lure2

Pic is picture

Drs do a second test to check that the first wasn't a transitory issue raised by other unrelated circumstances. Putting people on anticoagulants or even aspirin is not something to be done lightly. The APTT test isn't one highly regarded here as the DRVVT test as it can fluctuate eg liver issues or something astray with blood tests due to illness.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Puska

I believe if she is symptomatic, ( migraine, confirmed livedo, balance problems, history of multiple miscarriages) has no GI symptoms that would indicate a risk of a GI bleed with jr aspirin daily) she should be ok with jr strength aspirin until she can be seen by a specialist, assuming she book an appointment this week. I had a TIA between my second set of results. And was developing a large DVT that has done irreversible damage .

It's can be unwise to wait for a clot. I wouldn't advise anything stronger that jr aspirin until she is medically advised, but many people take jr strength aspirin daily just as a preventive for cardio vascular disease ," on good measure" .

She has been LA positive on two tests now. This is just my non medical opinion. I just know what happened to me.

( but I do agree with you in the big picture- I think a full aspirin would be too much- and we don't have all data in yet. Two positive LA tests though are telling if I'm understand correctly.)

Puska profile image
Puska in reply to KellyInTexas

Sure. I am using the app and can't see a second test - it just doesn't show - so just the original test. Baby aspirin with symptoms sounds like a plan - but I'm no Doctor. I tend to be cautious as a result. It's interesting how the DRVVT test wasn't positive but APTT was. It's the opposite for me.

KellyInTexas profile image
KellyInTexasAdministrator in reply to Puska

Ah. Gotcha. Scroll to top of her post and read APsnotFab's interpretation of results. I think that's how they came in. It was a little confusing because they were from two different labs companies- so apples to oranges.

Puska profile image
Puska in reply to KellyInTexas

And so many replies. I see as APsnotFab's reply that the tests were APTT and a slightly different clotting test was used from different labs. But with same positive result. It's no wonder specialists also get a bit confused - so many tests showing different results but from the same 'cause'. My GP has no understanding but totally relies on the rheumatologist for explanation.

falling2peices profile image
falling2peices in reply to Puska

My Gp is the one who did it It made no sense to me

Puska profile image
Puska in reply to falling2peices

Get Ye to a rheumatologist although at least the GP did order the followup test. That's a start. Sometimes the labs proceed to do further testing and sometimes they don't. It all seems a bit random the way they work but not so great for the patient.

falling2peices profile image
falling2peices in reply to Puska

My first test results are listed in another post but I'll post a pic of them here

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

I don't know if you can post within a thread. Can you? I'd be great if we could do that ! Teach me how!!! I'm old and tech unsaavy...

It's the picture on top of this thread I just posted it

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

So what was typed out that as APSnotFab responded to today was second set of labs from "not your GP."

1. Who ordered in this second set of labs and what specialization did this doc have? Rheumatologist?

2. What date were labs drawn?

3. You are asking who you should see next. My question: why on earth isn't the doctor who ordered this second set of positive LA labs referring you to a hematologist? Is it because this doctor is ( I'm guessing here) a Rheumatologist? Now this rheum is going to want you to " pass" another set of tests called the " clotting" part of the criteria.

Do you remember a few months ago on your last post I told you to be patient, this testing was going to likely get tricky? Well hold on to your britches. Here it comes, and you are in the worst possible place. Texas / Tennessee. Same difference. I hope I'm wrong... unless you have had a full on "in your face" clot, an inexperienced clinician ( hello Tennessee) will stick to the revised Sydney criteria for diagnosis like a newly Converted Baptist clings to a Bible during a tent revival. Got it?

Stick tight. Hang here and listen carefully.

Both tests were done by my primary doctor may 19,2017 and august 25,2017.. why she did them with 2 different labs I have no clue. I'm waiting for a referral to a hematologist which I have been waiting for this referral since may when my first test came back so who knows how long I'll be waiting. I will say there is more to these reports like a note on the 1st test which I was not on any treatment at all I'll copy the note but on the second test I was on aspirin

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

Aspirin will not matter on any of the tests at all. Not even the LA.

APTT 32.2 High sec 01

This test has not been validated for monitoring

unfractionated heparin therapy. aPTT-based therapeutic

ranges for unfractionated heparin therapy have not been

established. Consider ordering Heparin anti-Xa

(unfractionated).

Reference Range:

18 years and older: 22.9 - 30.2

Hexagonal Phospholipid Neutral

Verified by repeat analysis.

This value is POSITIVE.

This is a qualitative assay and is therefore reported as

positive for lupus anticoagulant or negative. Testing while

the patient is on anticoagulant therapy, including heparin

or dabigatran, may cause a false positive result. The

quantitative value is provided as an aid in diagnosis.

Reference Range:

0 - 11

LAC Interpretation 01

The following interpretation for the presence of a lupus

anticoagulant (LA) is not valid for patients receiving

warfarin, direct Xa inhibitor (e.g., rivaroxaban, apixaban)

or direct thrombin inhibitor (e.g., dabigatran) therapy.

These drugs may cause false positive lupus anticoagulant

(LA) results but will not interfere with aCL and B2GP1

antibody testing.

A lupus anticoagulant is detected. This interpretation is

made based on ISTH guidelines for LA diagnosis (J Thromb

Haemost. 2009; 7: 1737-40). As only persistent LA meet

laboratory diagnostic criteria for antiphospholipid

syndrome, repeat testing in 12 or more weeks is

recommended, ideally in the absence of anticoagulant

therapy. All ELISA-based antiphospholipid antibodies

evaluated are normal. Please contact Esoterix Coagulation

if further clarification is needed.

KellyInTexas profile image
KellyInTexasAdministrator

I think I know why she did them with different labs. She wanted the ELISA results. This was very smart! You've got a very good GP. Hang on to her. The ELISA tests for additional pro thrombotic antibodies. Its often seen as an " extended Lupus panel" by some Rheumatologists.

I am positive for one of the additional antibodies, and my son two.

Phosphotydysrerilines.

Ahhhh interesting so dose this second test show those ELISA results

KellyInTexas profile image
KellyInTexasAdministrator

Well, one of them mentions ELISA. You tell me, I can't keep them straight. Third sentence from bottom - esoterix coagulation if you have any questions is how their lab report ended. You will just need to read it to see.

KellyInTexas profile image
KellyInTexasAdministrator in reply to KellyInTexas

Oh, I understand your q now. No. It just said, " normal"- Scroll up and read it. ( you got this!👍🏻)

Dr Colleen Morton APS specialist at Vanderbilt University, Tennessee, good luck, Cindy in NJ. post is still here? falling2peices

Thank you 😊

Wittycjt profile image
Wittycjt in reply to Wittycjt

Falling to pieces glad you got this !

Me too I'm going to give the info to my dr tommorow and push her to get my referral

Or call yourself?

So did you call?

I have to have a referral and approval they said due to my insurance I have state insurance

That su--ks!

Yep agreed

Sure dose considering my drs office is on the slow side. They just now posted on my patient portal the first results and this second test they have had it all week and still haven't posted it or called me with the official results so I called them again waiting on nurse to call me back

Ok I now know why there was 2 different tests done. They day I went in for the 2nd test I didn't need or have a appointment it was just labs. The doctors were not in and the lab technician (nurse) ordered the test that her lab uses in between the 12 week wait the doctors office switched in house labs from lab corp to quest diagnostics. Just so happens it was between my two tests . My dr regular dr is still clueless and referring me to a hematologist I'm thinking a new dr is definitely in order. I would still not even have my results if I dint go online and get them my self. Smh

KellyInTexas profile image
KellyInTexasAdministrator in reply to falling2peices

So that explains it... I was a little surprised a GP was experienced enough to order in a different lab to look at " additional antibodies."

I was thoroughly impressed! That's pretty advanced stuff!

Well...APS patients need internal medicine. So make sure a GP you choose has is internal medicine.

So technically I had advance testing done lol

Funny the doctor I previously had for 10 years was a internal medicine doctor and I tried to show him my livedo and he wouldn't even look and my knees were literally purple n black he actual has me listed as probable MCTD n many others seems he had me on the sit and wait merry go round. After I asked him about that he chose to yell at me for over 10 min which my then 10 yr old recorded...

Lure2 profile image
Lure2 in reply to falling2peices

This is really going to be a long post......... well, why on earth did he do that? You had had him for 10 years and you also had your 10 year old boy/girl with you who had to listen 10 minutes to him! He should be ashamed of himself!

Kerstin in Stockholm

falling2peices profile image
falling2peices in reply to Lure2

I was definitely shocked myself and never returned didn't see a doctor again for a year he has no idea the impact he can have on a patient treating them that way it's uncalled for ethnically wrong too

Ok so drs nurse di nally emailed me back saying she's waiting on the results to be finalized by the lab ummmm they have been finalized since a week ago omg she's testing my intelligence grrr

Well hope she don't mind I provided her with the test results myself that clearly state finalized august 29

So where are you at now may I ask?

Waiting

I tried to reply yesterday and I couldn't but I'm still waiting personally I think the dr is clueless as to my results and is waiting on someone else to interpret for her. But it's still ridiculous

Well finally I received the following email...

I do have the results, but they need to be interpreted by the hematologist. I am faxing everything to West Clinic this morning for them to review and they will let me know when we can schedule an appointment after they have reviewed everything. I apologize for the delay on this. We have been having major issues with our phones and internet going down almost every day the last two weeks, which makes it difficult to do much. Just know, I have not forgetten about you.

Mary

falling2peices found it finally!

Oh wow Cindy ur determined but I thought I sent it to u lol

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