If Im already taking blood thInners will blood tests for Hughes be affected ?

[Britchic]

Started on blood thinners a year ago due to blood clots, but really want to be tested for Hughes since I have factor iv, and multitude of all these things everyone here suffers with. Im pretty blown away after finding this website, and have found myself drawn back to it every few days, its helped confirm im not a crazy hypochondriac and its given me the courage this week to go back to my doctor and ask if all these illnesses over the years could please be put under one 'umbrella'. She's sending me for bloodwork but I have felt a little better since starting the blood thinner, but not as good as I think I should feel. I also have Celiac disease, degenerative disc disease and sleep apnea and I feel each time I have been given a diagnoses they stopped thinking about anything else. I have pain every day and every so often (last week!) flare ups that just leave me breathless and in a state of brain fog feeling unable to function through a normal day. Its debilitating, by the time I go back the doctor I look normal. Im 51 years old and feel 80 some days.

[KellyInTexas Administrator]

I’m glad you are finding comfort in your time with all of us here.

To answer your question, yes... and no!

I’ll explain in great pedantic detail, as many here may not actually know this.

Firstly, the general answer will be the following: the B2Gp1 and aCL tests will be unaffected by blood thinners and can be tested for with no problem.

The only test that will be affected by blood thinners Is the LA test, as it is measured differently than the others, which is absolutely correct. Your blood product will actually be mixed with a dilute viper venom to measure the clotting time.

Usually that’s the end of the story.

However..... ( a ha!) a very astute Hematologist CAN in fact test for the LA antibody specifically if you are already on anticoagulation. He or she just adds one or two more processes into the process. So it is indeed possible but you have to be at a top notch facility. For example, I learned about this when Professor Hannah Cohen ran my APS panel. ( surprise!)

[Britchic in reply to KellyInTexas]

Thanks I’ll mention it to my dr

Is it possible to get a diagnosis without a positive blood work if you already have factor 5 and many other symptoms? Are you in USA? Or UK?

[KellyInTexas Administrator in reply to Britchic]

I live in Texas- in the states.

In your first post I directed you to a website. There was mention of sero negative APS within that website.

Usually ( hopefully!) there would be strong evidence pointing to APS before a doctor would give a diagnosis. I would be very concerned about a doctor who would give out an APS diagnosis without substantial evidence.

All doctors are different, aren’t they? Our son’s pediatric Hematologist ( London educated) in San Antonio for example, gave our son the diagnosis based on low positive antibodies, mild frequent migraines, but a very strong family history.

My son certainly has not had a clot, so it would be foolish / possibly dangerous to start anticoagulation. No one would think this wise. He’s young, and very active , and on team tennis in athletics. Instead he was placed on 2 baby ( junior) Aspirins daily.

We found he had occasional nose bleeds- we played with dose and have found 1 baby aspirin every third day is what suits him.

It is patient to patent dependent. It would depend on many factors. I can’t speak to what your doctors might or might not do.

I know that I had two of the three tests low to moderate positive in July of 2016. I had not idea what APS was, I’d never heard of it. All I knew is I was loosing my balance , loosing my vision and optic nerves, and having horrific migraines so my neurologist and opthomologist together on a conference call got me booked urgently in to see a neuro opthomologist, who in turn referred me to Rheumatoligist. (I was already his patient but had not seen in 5 years or so.)

So as I said, in late July 2016 the first panel came back with two positive results. That was the first time I had heard of APS. The second set came back at the end of October. Also positive. Low- medium.

My history was multiple miscarriages miscarriage, ITP in infancy, right temporal lobe seizures, suspected TIA , my mom died of blood clots/ PE, and so on...

My Rheumatoligist said that I did not meet the criteria to begin any kind of anticoagulation. Just stick with my migraines medication.

The next very week I had a massive DVT and was hospitalized for 10 days.

The hospital assigned a hematologist. The APS panel was run again. The panel was negative. He told me that because the titers were not highly positive and persistent, I did not have APS.

My Rheumatoligist did not agree. He explained that these antibodies sometimes come and go, but that I did have APS.

He pulled in his own Hematologist.

After about a month I still felt terrible- couldn’t keep INR in range. My Hematologist said- I need help. I’ve not had a lot of experience with APS. Let’s get a second set of eyes on your case. Why is your INR so erratic? Why can’t we get it up? Why aren’t you feeling better?

I chose to see a specialist in the USA who told me that because I had gone sero negative and did not have “ persistently high titers” I did not have APS. I asked this specialist how he could explain the large blood clot in arm ? The specialist said I had been on a long haul flight to France, which was true- but I had noticed the pain the day before I boarded flight. The specialist wasn’t listening... or just didn’t catch that part.

The specialist told my Hematologist the recommendation was to dismiss me from Hematologist’s practice as not having APS. The Hematologist did exactly that.

My GP took over my Warfarin- and Rheumatoligist said go to London and see Dr Hughes.

Long story short- group decision was to go directly to London. The INR was set too low in Texas. It had been set at 3.0

With seizures and brain involvement with clotting it needed to be 4.0.

I’ve since continued to develop multipleDVT’s even at INR of 4.5

So as I say, it’s patient to patient dependent.

Please look at This morning’s post put on by our admin regarding diagnostic criteria vs clinical diagnosis . It will shed light on your very question.

Take my sons story, compared to my story, and see how it fits with the criteria. Then think about your question. You will likely see where you fit from your own perspective as well as a physician ‘s.

[MaryF Administrator in reply to KellyInTexas]

Great detail, KellyInTexas you are so good at explaining the technical stuff, for all our forum members on here. I only ever here great things about Prof Hannah Cohen. And Britchic do make sure they properly evaluate your Thyroid function, also your levels of D, B12, Folate and Ferritin as this can impact how well we feel, and some of these can be missed. MaryF

[Lure2]

So you have not taken the 3 bloodtests for Antiphospholipidsyndrome and have not got a Diagnose. Is that correct? Are you on Warfarin now or on some other anticoagulation? Is that for Factor IV (?) or V and on what therapeutic level if Warfarin?

I know nothing about Factor V etc.

[Britchic in reply to Lure2]

The reason I am on the blood thinner was due to a pulmonary embolism a year ago - We think it originated from a mesenteric clot since I had had so much pain in my tummy but around that time they did an endoscopy and confirmed I had celiac disease ( despite negative blood works I had taken myself gluten-free six years previously and it helped a lot with inflammation and a lot of my health problems but not all of them ) I also have sleep apnea degenerative disc disease and many flareups of feeling very unwell which I often attribute to celiac but I’m beginning to think it’s not the cause because I have limited my food to just cooking for myself now . When I first saw the Hughes site saying sticky blood I knew I’d been told I had that previously . I spoke to my doctor this week and she is going to do my blood works but I am certain I have already had so many blood works in the past but nothing has ever been found . I have the laboratory requisition so these are the things they are going to test me for but I’m worried that the blood then I will give Miss readings and it will be a waste of time again

Comp metabolic

Lipid panel

Ana

CBC auto diff

Crp quant

Lyme igG

RHEUM FACT

SED rate

Thyroid

TSH

VIT B12

I have just had another week With a multitude of illness again with lots of back neck pain brain fog racing heart tinitus, migraine sever fatigue. I literally woke up three days ago and felt like the devil had left my system . I can’t keep going on struggling like this I have started working two days a week and come barely handle it , I can’t sit for long because I get numb hands numb feet pins and needles and very dull achy legs I have to raise them all the time.

The other thing I wondered about any of this blood work is if things don’t show if your body is not currently in a flare

[KellyInTexas Administrator in reply to Britchic]

Make sure your thyroid is checked, as it can cause the pins and needles sensation. A full complete/ comprehensive panel must be ordered.

Also, vitamins and minerals plus ferritin and full RBC should be checked. Vitamin D -3 seems to be one we tend to be low on, as well as b-12.

Please have a look under pinned post section of this forum for “ mineral and vitamin tests” .

[Britchic in reply to KellyInTexas]

thanks so much I appreciate your time and Im trying to get some notes together to see my rheumatologist on Monday. You said you sent me a link on my first post, I cant see this!! (do you mean a post I sent previous today? How can I see my first posts Im sorry Im not finding how to navigate well here

[KellyInTexas Administrator in reply to Britchic]

No, I think it was a couple of months ago. If you go to your profile, you will see your , “posts”. I had a look at that so I could see your bio, and your previous posts. ( do I could get quickly up to speed with and we could try to be on the same page with each other, so to speak.)

Sometimes I ( embarrassingly) forget to do that and I ask poor forum members to repeat themselves needlessly!

I try not to do that!

This forum can be a little tricky to navigate. Keep asking if you have any questions.

Best of luck with your appointment 👍

[KellyInTexas Administrator in reply to KellyInTexas]

Oh, and just in case you don’t find it easily, here is the link again.

ghic.world./

[KellyInTexas Administrator in reply to Britchic]

That’s a very good question, about the body being in a flare and how that affects the status of the APS antibody activity during that time.

I myself have been in a flare mode and have been drawn with negative results, and at other times have been very well, and have had them come back positive.

Additionally, I have experienced having been drawn in a good phase one week by my Hematologist, and one week later, still in a good phase, drawn by my Rheumatoligist. ( one didn’t know the other was drawing. I didn’t either- they check for a battery of different things. )

Wouldn’t you know, one batch was positive, and the other negative! Actually, I think the blood draws were 5 days apart.

[Lure2 in reply to Britchic]

What sort of bloodthinner do you use and if Warfarin what therapeutic level do you have to keep?

Were the 3 bloodtests ordered from an APS-Specialist who is working with patients with autoimmun illnesses like APS? There are 3 bloodtests to diagnose APS as you probably know.

[GinaD]

Just yesterday I listened to the latest edition of the Broken Brain podcast. The subject ( that episode was healthy sleep) recounted how he was diagnosed with degenerative discs and he eventually remedied that problem by healthier eating and switching out colas for water. Given that you have celiac ( as do I) you might want to check out that free podcast.