Sticky Blood-Hughes Syndrome Support
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Lupus anticoagulant test

Could somebody please in form me how long it takes to get the result of a Lupus anti coagulant test ? I have been waiting weeks for the result.

Also advice on test results please.........

MVC is slightly low at 82 and my iron stores are normal at 38 but are lower than they have been................a full blood count and ferritin to be carried out in three months to check I am not developing anaemia.

I have developed problems since not being able to tolerate warfarin and the heparin injections. I now have an enlarged fatty liver of which I suspect became toxic due to the medication of which has now been withdrawn and I am now back on aspirin and clopidogrel.

I shall be seeing a consultant in Bath on the 29th of this month.

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I don’t know in the U.K., but in the states about a week.

Ferritin should be close to 100. ( UK preference.) on the USA we have a lower threshold for tolerance. 60 is shamefully acceptable.

I’ve learned that how “ plump” your red blood cells are is important. Mine look ok despite a ferritin level of 16.( still not addressed. They are telling me it’s not a problem... my endo said it’s a problem- my hematologist has not even mentioned it.)

The other things I’m not sure about, although I’m inclined to think you should have your Lipid panel checked. ( cholesterols.) it’s not terribly uncommon, I’ve learned from APSnot Fab , to have lazy thyroid and elevated Lipid panel. I certainly have this now.

I am flagging out of range for a T3-4 conversion ( total THS - the “ regulator” number looks good so endo said that’s all that really matters so ignore the other - I’m fine.) and quite high hyperlipidemia. They have prescribed me 40mg Crestor.

Not addressing any Thyroid issues or low ferritin. I’m so frustrated. I don’t want the Crestor because of muscle cramps to legs. I won’t be able to tell if I’m clotting or not so I’m not taking the Crestor.

Just food for thought, Jill. But I’m not even understanding much of this myself.

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I am the same it is all above my head and i'm in a mucking fuddle.

My endo over medicates me even though my Gp queries as to why. I am hypo thyroid and hypo parathyroid........just to complicate things. :-(

At least my anticardoilipin antibodies were normal that's something to be grateful for. My haemogloblin was normal 134, white count 5.1, platlets 188.............I hope your following because I havn't a clue. :-)

These results have come from the haematologist who diagnosed my sticky blood in 2008 but never followed me up...........stupid woman.

I am hoping to shed some light on the liver problem when I go to Bath in a couple of weeks time. I am adamant these problems have arisen since my short trial of warfarin of which made me so poorly I ended up in hospital the heparin also had a similar effect on me and both have now been stopped so now back on aspirin and clopidogrel.

It's enough to make you want to throw the towel in I am fed up with the lot of them they all contradict each other and never look at the whole picture of what is going on. Aaaaaaaaaagh

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Kelly as an FYI the Crestor hasn’t caused me any cramping like my previous avorstatin did, so this might do the trick. My cholesterol is and always has been fine. I was told I am on the Crestor because it “ does something” to decrease our APL antibody production. You may want to ask about this before you make your decision. Keep us posted. Cindy

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I’m quite high with cholesterol numbers. My sis had a really severe reaction with the muscle cramps.

My ins. Will not cover Brand Crestor unfortunately... the majority doctors are telling me it should not make a difference if it’s brand or not, with the exception of a couple of docs.

Ive discussed this quite at length with them. They are more worried about heart muscle. ( I’m starting to have heart pain at times. )

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Kelly, mine is the generic for Crestor... just so you know, so you can make an informed decision. Sorry about the heart pain, Cindy

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Ah! That IS god to know! I have 40 mg pravastatin in my med cabinet right now- never touched. My rheum issuggesting I ask my GP to Lower it to 5 mg. Maybe I’ll just do that, then.

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Laboratories vary and thus one lab cannot be compared with another lab. This is why specialists like to repeat the blood tests as they are familiar with the levels of that particular lab.

If you are concerned, phone your GP and ask about the results.

With good wishes,

Ros

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Hi Ross,

That's the problem labs vary so much and many of our letter's with results do not give the lab margin's so we cant compare.

I shall hopefully be able to discuss the results on the 29th when I go to Bath. I were just wondering if these results could be due to the liver problem.

Best wishes

Jill

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You might want to be a bit cheeky and call your hospital lab to ask for the test margins - that’s just generic information so shouldn’t be a problem. Just call your hospital switch board and you should get through!

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You can also ask them how often they do the test and how long it takes to process. My local hospital only runs that test every two weeks and it take about 10 days to get the results- so a very painful wait!

Wishing you lots of luck xx

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I shall try doing that once and if I ever get the result..........that's if I find out what lab it went to.

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I have no idea... I’m sorry.

Ros is very right here- I might add - I think find a specialist you can stay stable with. This can be very tricky- but then you will have stability.

Here I was told I need the following team approach:

1. A GP with a specialization if internal medicine

2. Hematologist

3. Neurologist

4. Rheumatologist

It is the job of the GP to be the “ Work horse” if you will. The “ operations manager” and Gate Keeper if other consults needed to be brought on board. Not only do most of our insurance companies require a pre authorization from our primary care ( PC , also called GP , also called internist if they have internal medicine qualifications which most have, but not always. Sometimes it’s a specialty of family practice and may not also have internal medicine qualifications.)

What stands out to me, which is a good thing, is a correlation between wbc and normal antibodies at the moment.

5 is normal. This should help you stay healthier this winter, I hope.

I run 2.9-3.5 when my antibodies flare.

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You are much more knowledgeable than I.

I am hoping the consultant I am seeing this month will look at the whole picture and be able to guide me in the right direction..........he is a very good rheumatologist who knows how to treat Aps and what problems to watch out for.

The hematologist I saw recently had very little knowledge or understanding of hughes.

As for the neurologist I saw locally he told me it was all age related need I say more.

Fingers crossed for the 29th I am sure this consultant will be of some help and will guide me in the right direction.

I will let you know how I get on.

Jill

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Your Rheumatologist can perhaps help direct you to the proper GP and heme you will need. Maybe you should start a check list of these “ action items “ in bullet point format to go over with this Rheum during appointment.

This sounds very encouraging- a perfect starting point.

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Hi Jillmo,

Not so many days left before you see your new Specialist in Bath.

I wonder how long time you were on Warfarin and also why you also took LMW Heparin?

Did you take it instead of Warfarin perhaps and you could not continue with it either because of side-effects?

Is this the first time you have taken Lupus Anticoagulant? Have you tested positive to the two other antibodies? I think it took maximum 10 days to get a result here in Stockholm. Call the Doctor who asked for the tests! The LA-test I guess differ from lab to lab. I was always positive.

Best wishes on December 29!

Kerstin in Stockholm

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Hi Kerstin,

I am lupus anticoagulant positive. I have been to see Professor Hughes who diagnosed me with Aps.

I was taking aspirin and clopigogrel but the aspirin started to irritate my stomach so the consultant at Guys Hospital advised that I should be anticoagulated with warfarin.

I reacted quite badly to the warfarin and was admitted into hospital. If you remember they stopped all my medication whilst in hospital and my INR dropped to 1.2.

I insisted they bridged me with something because I were now at risk of clotting I had already had an ITA when admitted into hospital. I were given LMWH but I also reacted to that and after a few weeks I were put back onto the aspirin and clopidogrel.

They are telling me they have not as yet got the result ! It has been weeks since my blood was taken. I have had a few positive results too and I would like the recent results so that I can take them with me to Bath.

I shall need all the luck I can get at this pace.

Jill xx

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Where were you hospitalized? In what city/ town? Where were labs sent? London? If you were in a smaller hospital, likely the blood work was a send out to a larger city. I’m guessing London is only city in England with such a lab?

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I'm in the UK and was hospitalized in Swindon in Wiltshire. You could be right maybe they were sent to another Lab outside of the district, I never thought of that. It would explain why the results are taking so long.

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Our send outs still come back with a week... our state is larger than the entire UK.

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Hi Jill

Hope you're feeling OK. My APs results too about a 9 days to come back. One of my scleroderma anti-body tests took a month! And then it came back with the number but no range and the GP said he had no idea. In the end I just asked someone knowledgable on a scleroderma forum and she said she was pretty sure that the number counted as negative. I hope she was right! Im not sure how I can be constantly amazed at what a shambles the NHS seems to be in or at least how poor it is at dealing with rare illnesses. Im sure if I went to the GP with the flu then he would be brilliant at diagnosing and treating it. Connective tissue disaese not so much so.

I think you are right that it is important to get all your blood tests back before seeing the consultant. I was in a similar situation and phoned and explaiend to the surgery that I needed the results for the consultant appoinment and they then sorted it out.

How is the aspirin and clopidogrel working for you atm. Is it still causing stoamch problems? Im still on just aspirin as I havent yet seen my consultant in wales who the London Bridge guy suggested a range of anti-coagulant options to (like fragmin injections). But the aspirin on its own seems to help quite a bit. Though nothing seems to touch the extreme tinnitus. I suspect that I will have to wait for the afterlife for that to disappear or go down a bit! And if there is a hell and I go there, at least I will be bring my own torture with me, which should lighten the load a bit for the devils with pitchforks!

Hope appointment goes well on the 29th and you are well set up for a good 2018.

Best wishes

R

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Just realised that I seem to have ended up with the charlieagain account I set up when I couldnt get into charlieab! No idea why soemtimes its one and sometimes another.

Rupert

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OK have got the other account back. I would delete one but then I would probably find that I accidently deleted both.

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Get your head in gear man how on earth did you manage to do that ? And I thought I were in a mucking fuddle. :-)

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Think that was a mucking fuddle. I went to my local Headway group last week (as decided a support group would be good and I seem to qualify on account of the brain lesions). But this is what happened!

healthunlocked.com/headway/...

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What can I say. :-) :-) :-)

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That was hilarious charlieab .love your stories

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You are funny and make me laugh.......devils with pitchforks !

You are so right about the NHS and rare diseases if it were a boil on the bum they would be straight on to it. Mind you depression is something they are good at diagnosing even when you havn't got it they try to push the anti depressant drugs onto you.

Who are you seeing in Wales ? I used to see a Dr Diane in Bristol but I have been told he is now in Cardiff.

I am ok on the aspirin and clopidogrel but I cant say it keeps me stable I still have funny bouts where I'm unable to function. The aspirin was seriously irritating my stomach even though I were taking Lansoprazole hence the change to Warfarin.

Unfortunately that was not a good move for me because I am adamant it was the warfarin and heparin that has flared the now liver problem.........perhaps I already had an underlying issue. It is a shame I am unable to tolerate the warfarin because my head felt so much clearer whilst taking it.

Whilst I was poorly in hospital due to ignorance of our condition my medication was stopped putting me at risk of clotting. I had another TIA before being admitted and was in need of bridging because my already low INR was rapidly dropping. After one hell of a fight and making a complaint I was eventually put on LMWH injections but this also gave me serious health issues hence now being back on aspirin and clopidogrel.

I now take a natural product called slippery elm that I buy off the net this seems to help my sore stomach problem.........it tastes awful and looks like a load of slime but its doing the job.

Dont talk to me about the tinnitis it drives you mad. I cant recall if the warfarin or LMWH helped it I had to many other issues going on at the time. Most of the consultants in London favour warfarin or heparin to anticoagulate but not all can take it me being one of them. :-(

I shall let you know how I get on In Bath I have seen this consultant before some years back and he took great interest in my case so fingers crossed I get some help and guidance.

Just ignore any typo's got my fuzz head on this morn.

Jill

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True about the boil. They would have it lanced before you could get out of their consulting room. And that would probably count as a major operation for their NHS framework assessment. But chronic conditions just drain their resources with no end in sight (unless the patient moves practices or pops his/her clogs).

And very true about teh depression. I met someone this week (on trip to try and finally sort out buying flat in Swansea) who said she had been on anti-depressants for 15 years. They kept switching them and none worked and she thinks that they caused long term damage. She now has a very sweet therapy dog called ummm ummm. Darn, thought if I took a run up then I might remember teh name. Anyways, Im not a big pet fan, but this is one appealling dog. I think he liked me too. But she claims he likes every one. If I get teh flat by the beach then I think a dog would make sense. It would be only on the third floor and so I think a dog could make its own way down the stairs and to teh beach or use the lift with some help.

Im seeing Dr Nash in Wales (who seems very good) but also might pop back to Dr Kaul at London Bridge. Though will have to save some money first! Was shocked when checked my account today and found that ive spent a fortune on private medical consultants and house surveys. Not to mention one asbestos survey and one electrical survey. tbh Im thinking of asking the eltrical survey guy (who seems very good) if he knows anything about neurology. Cant shed less light than the medical profession has shed so far.

Your consultant in Bath sounds like he could be the type who will be on your side and go extra mile to sort things out. I really hope so anyways. And yes, please let me know how it goes.

best wishes

Charliewhatever ;)

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btw under the story about the bag stealing, you should check out the reply some one has left with the anecdote about the cathetar. Makes me laugh even when i think about it.

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I did read the story about the cathetar that's the sort of stupid thing I would do.

I am going back a number of years but I had a major operation in St Tom's London. I was in need of a bedpan and in those days we are talking the metal ones. I couldn't pass a damned thing whilst laid on the bed so the nurse put the pan onto a chair for me to perch on........ah what a relief I went.

As I stood up my night dress hooked over the bedpan and sent it flying across the ward floor with an almighty clash waking every one up I was so embarrassed. :-(

A bit of laughter makes you feel a bit lighter thanks for your story......now be off with you. Hope the link to our private messages is still active. Jill

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Hi charlieagain,

Have you got a fixed date from the London Bridge Doctor to the Consultant in Wales or is he waiting for you to do it yourself? Is the Consultant in Wales knowledable of APS and the need for anticoagulation in your case?

The Christmas season is coming and you should perhaps ask for a date as soon as possible.

Best wishes from Kerstin in Stockholm

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Hi Kirstin

Hope you're well. Thats a very good question. It seems there is no internal momentum in the diagnostic process. If you dont get in touch, and prod, and make appointments, then nothing will move forward. So what happens when people are too ill to do that prodding.

The london bridge consultant wrote to the wales one setting out posisble options (eg fragmin) but I guess I now need to make another appointment to see the Wales consultant. No chance before christmas. But aspirin does seem to be helping.

tbh Im sick of going to see doctors and just want to forget about it all for a while. Kind of hope it all goes away! I know thats not really an option but (as evryone here knows) it can all be pretty draining.

Anyway, I hope things are going ok for you in Stockholm. Must be pretty special there around Christmas. There use to be a tree every year in Trafalgar Square gifted by Sweden. But Im not sure if that still happens. I watched something about it on UK programme from my childhood called Blue Peter (a lomg time ago now).

best wshes

R

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It really does depend on where you had the test. I know some of my tests come back on the day whereas others are sent to a larger hospital so take much longer. I’m still waiting for some autoantibodies tests I had done 3 weeks ago.

I’m sure it won’t be too much longer. Why is it you want these results when you’ve already been diagnosed as positive for it from Prof Hughes? They can come in and out of being positive so can cause much anxiety for us who know we have the condition but the test results change!

Good luck with your specialist x

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I have just received the blood test result I was waiting for it was LA positive again..........so i am repeatedly positive. Jill

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Hi Jillmo,

Like Yllek I can not understand why you take a new Lupus Anticoagulant test. Once positive LA you can not take it any longer when you start Warfarin but if you show the Specialist your copies taken by prof Hughes they can understand that you are positive to that antibody. It is more interesting to see how the other 2 antibodies react from time to time.

I have always the two others > 160 the last years but I am not sure how much it says about our illness actually.

Also I think you should talk to this Specialist about your coagulation situation as you need an INR between 3.0 - 4.0 and now you are not properly anticoagulated I should say. But I am not medical trained as you know.

Kerstin

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Its a long story Kerstin,

Due to stomach problems and on the advice of Guys Hospital it was suggested I were anticoagulated so I was referred to a haematologist. The letter went astray and instead of being seen by a consultant I were seen in a clinic where I was unable to discuss my options and I were put on Warfarin.

This I reacted quite badly to and as you are aware was hospitalised. The hospital didn't have a clue on how to treat me my INR only reached 2.2 when all medicine was stopped so it rapidly dropped to 1.6.

I am repeatedly positive LA and 100% Aps but the haematologist at my local hospital seems to think it necessary to do the test again. It was this very same haematologist who diagnosed me with sticky blood in 2007 put me on aspirin but she never kept an eye on me or do further tests..............so I have no faith in her what so ever.

I am going to have to wait and see what Bath have to say when I see them on the 29th. He is a lovely consultant and knows about Aps so he should be able to guide me.

Best wishes

Jill x

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I have just received the blood test result I was waiting for it was LA positive again..........so i am repeatedly positive. Jill

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Not surprised?!

Hope you get help & support on the 29th. XX

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Seconded... haematologist this week (Bristol Heart Institute) said 2 weeks for Lupus results. I went to see them, more to discuss APS in the round than seek any new diagnosis.

They said similar to when I was originally diagnosed, any anti-coagulent interferes with the Lupus test, so it may record a false positive. Because I was pretty ill generally, I can't remember how they took the 2 tests last time (circa 2009/10) to give me the APS result.

I'm not too bothered, as I knew and the consultant re-explained, due to my history (DVTs, 2xPE including thrombosis while anticoagulated), I would likely remain on anti-coagulent for life.

Hope thinks move on for you.

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Ah Bristol your talking quite local to me i'm in Swindon.

I was told to wait three weeks before having the test to let the warfarin and heparin get out of my system so the results will be interesting.

It is good you are aware of your condition and as you rightly state you will be medicated from now on accordingly.

Lets hope you keep stable now you are being anticoagulated.

Take care

Jill

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Have you guys ever heard of the chromogenic Factor X Assay? ( CFX). I just “ tested positive “ for this “ artifact. It’s a new test- only 5 years old and I believe it to be a “ work around “ for the lupus Anticoagulant anti body itself.

I’m now getting drawn about twice a week for it. It is the “ real” vein value ! It’s a % . I can sometimes take one entire number off ( Lower) than my vein value INR I’m getting at lab.

The drawback? It’s a three day send out. But you learn the values .

It’s why I’ve been reclotting. I’ve only THOUGHT I was properly anti coagulated. Apparently I’ve not been.

What’s the word in London on the test.

London peeps!!!! Go shake some trees and see what info falls out for us! Talk to Hanna Cohen, Beverly Hunt and Karen Breen!

READY- SET.... GO!!!!!!!!!!!!

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Ha Ha They wouldn't spot the wood through the tree's. :-)

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Your GP surgery will give you an indication of the time frame, however do keep ringing up, as they will not necessarily ring you, also a person not qualified to read the result may not give you the right news. Do ask for a paper copy if you can. I am glad you are seeing your consultant soon. MaryF

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Nice to hear from you Mary,

A copy of the results has been put in the post so I can take it to my appointment with me. I think whilst being anticoagulated with warfarin I suffered hepatotoxicity hence my being admitted to hospital !

If you remember I were taking off my blood thinners during my hospital stay and I had to fight to be bridged. I was eventually given LMWH but reacted to that also and was now very poorly...................I now have raised liver enzymes, bordering anaemia and I am very uncomfortable with an enlarged liver.

I am hoping the consultant I shall be seeing will look at the whole picture and come up with some answer's.

The haematologist who requested the repeat LA even though I am repeatedly positive seem's to be under the impression Aps comes and goes. She was the one that diagnosed me in 2007 with sticky blood slapped me on aspirin and never followed me up.

Some of the stories I read on here are unbelievable. I read one yesterday that made me so angry I could have cried for the young lass that posted it.

You admins work so damned hard to spread the word about Aps and we now have our own charity but we are not reaching all our hospitals and Gps as yet. Lets hope in 2018 we reach them all. Xx

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