Can anyone advise me how test results... - Hughes Syndrome A...

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Can anyone advise me how test results for Beta 2 Glycoprotein 1 Antibodies IgG (and IgM) are normally reported?

Spicer21 profile image
13 Replies

Hi,

I would be grateful if anyone can tell me how test results for Beta 2 Glycoprotein 1 Antibodies IgG and IgM are normally reported.

I had a Beta 2 Glycoprotein 1 Antibodies IgG test and a Beta 2 Glycoprotein 1 Antibodies IgM test done as part of the Medichecks Hughes Syndrome Screening.

To cut a long story short, first of all they said my test results were as follows:

20 (range 0.000 - 19.990) for both tests and the 20 figure result was flagged up in red type as being high (as it was outside of the normal range).

Then when I queried this they said that the results for both test were actually:

< 20 (range 0 - 20) negative

Are the results of these tests usually merely reported as being < 20 (less than 20) or do they normally give an exact figure of what the patient actually tested as being? (With a figure of < 20 I surmise that I could be anything from 0 - 19.99.)

Many thanks in advance.

Fielder

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Spicer21
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13 Replies
Spicer21 profile image
Spicer21

Hi and thanks APsnotFab. I've just rung Medichecks and the first results report was supposed to be erroneously positive due to an 'IT error' (but they couldn't/wouldn't explain what that actually meant!) and the second negative results report is supposed to be correct. I'm far from assured that I can trust their testing (and their London lab didn't take enough blood for my APPT test) but it seems that I am probably sero-negative - next stop expert opinion from one of the specialists you kindly advised me about a few weeks back.

misswoosie profile image
misswoosie in reply toSpicer21

Hi, can I ask you if you ever did get an APTT done and what your result was? If it was high, did they try and correct it with the normal plasma tests?

I've had 2 APTT's both above normal range. First was found in A/E when thought I had a DVT. Bloods were negative for DVT. I got GP to check it 6 days later and still above range but it corrected with normal plasma, which, if the lab did it correctly,means I don't have LA, but something else.

Regarding the above, I would ask medichecks exactly what they mean by "an IT error" and ask for a re-test free or a refund as you've lost confidence in them and want to go elsewhere. It's very bad practice that a positive result was sent out to you and then they said it was incorrect. I don;t understand how it could happen. A Haematologist should be authorising results before they go out.

If they refuse, ask them to provide you with the details of their accrediting body so that you can contact (all labs have to be accredited and inspected and for NHS labs it's usually UKAS who accredits and inspects them).

If you know the name of the actual lab who does their testing you can check here.

ukas.com/browse-accredited-...

Wondering if it's Pathology First LLP?

Of course it could be that the results go from the Lab to medichecks and then medichecks have their own system that they manually enter the results into so that it's going out with their own letter head etc on it. If this is where the error occured then they definitely won't want you to start talking about making a complaint about the laboratory!

Good Luck.

Spicer21 profile image
Spicer21 in reply tomisswoosie

Hi misswosie :)

Thanks so much for your reply and advice.

I've had two APTT tests done (not thanks though to Medichecks though as their clinic didn't take enough of my blood to do it and, although Medichecks have offered to retest, it means another trip to London which, with my ill health, I'm not up to enduring again). Anyway, both APTT tests were done by my GP and were supposedly okay; they were:

APTT 32.1 seconds 25.5 - 38.5

APTT Ratio 1.00 ratio 0.8 - 1.2

and

APPT 33.4 seconds 25.5 - 38.5

APTT Ratio 1.04 ratio 0.8 - 1.2

I believe the samples for the antibody tests were farmed out from Medichecks to 'The Doctors Lab' laboratory; leastways that's what the phlebotomist who took my blood told me...Medicheck's London clinic where they take the blood for Hughes Screening is not more than a road or two away from 'The Doctors Lab'. All it says on the Medichecks' lab results sheet is referral lab 900, which is really helpful! :(

I intend to write to Medichecks HQ to complain (as the staff on their phones are as expert as a lot of politicians are at not giving a straight answer to an awkward question). I will complain about the lab if necessary...

I once complained to UKAS about another lab in London, i.e. 'The London Clinic' lab, when they advised me that a test was negative for thyroid antibodies (i.e. TPO Abs)...As, quite coincidentally, the same blood test was done on the same day at an NHS hospital that I attend for a rare neurological condition - and my TPOs were actually extremely high. (I was obviously not expecting that the test would be done on the NHS that day, otherwise I wouldn't have paid for a private test.) The accreditation body did an inspection as a result of my complaint. They found that the test was down to human error and made the lab change some of their procedures and, if my memory serves me correctly, they had to buy some new equipment to do so too; which I felt served them right for not taking my complaint seriously and trying to brush me off. I like to think that my bothering to complain saved at at least a few people from receiving erroneous results.

I was also not at all impressed that Medicheck's London clinic was in a basement down a very high and narrow flight of concrete steps. (Even my husband who is fit and healthy didn't like the look of them!) I didn't ask about disabled access as I can walk with my stick and can usually get up and down normal stairs okay. Suffice to say, I'm far from impressed! Semi-rant over now! :)

misswoosie profile image
misswoosie in reply toSpicer21

A good rant is called for I think! I would imagine that most errors in lab results are due to human error, although in 27 years in the NHS I think I only ever new of 1 lab error, and for 10 of those years I worked in Intensive care where we did a lot of labs, as you can imagine.

I went for my bloods via Smartbloods. Ordered and paid online and they sent the request form by email. Attended the private hospital near us for phlebotomy. 5 days later got the results.The blood results were marked as Blue Horizon.

Maybe there's somewhere closer to you for bloods?

Spicer21 profile image
Spicer21 in reply tomisswoosie

Very interesting what you say about only 1 lab error known to you in a career of 27 years in the NHS...What with my two bad experiences of paying privately to have blood tests done (and I haven't had many tests done privately) no wonder some people have told me that their private consultants want them to have the tests repeated at the lab of the consultant's choice because they don't trust the results of some of the private labs. (Seems like it's therefore not always a question of squeezing as much money out of their private patients as possible and their concerns are justified.)

I'm going to investigate going to a clinic more local to my home, as you suggest. (I definitely won't be using Medichecks again!) Will take a look at Smartbloods - thanks for mentioning them to me.

I hope you get to the bottom of exactly why you have high APTTs.

misswoosie profile image
misswoosie in reply toSpicer21

The private hospital I went to belongs to Spire Health. Only thing with Smartbloods is that they dont seem to do all types of tests, as far as I can see anyway. Thing with the NHS labs is that they are very rigorous about doing all the calibrations and other quality assurance stuff. Worries me that a lot of the private clinics/ hospitals/ labs etc here are running on agency staff, especially at the bottom of the pecking order.

Good luck!

Spicer21 profile image
Spicer21 in reply tomisswoosie

That explains a lot, i.e. that they use so many agency staff :(

Not sure whether you'll have already seen it, but I just looked up Blue Horizons' own website; I don't know but perhaps it might have a bigger range of tests than going through Smartbloods bluehorizonmedicals.co.uk

Thanks again for your input - greatly appreciate it.

misswoosie profile image
misswoosie in reply toSpicer21

yes, saw that, but they didn't't seem to have a phlebotomy service near us, but just found this site

privatebloodtests.co.uk/,

You're very welcome. Hope we both get sorted soon.

misswoosie profile image
misswoosie in reply tomisswoosie

Yikes- they're expensive!

Spicer21 profile image
Spicer21 in reply tomisswoosie

Medichecks were so much cheaper but, now I can't trust their results, I think I might be better off forking out to see a specialist and letting them order the testing; it's not easy to know what to do :( It can be quite a journey getting to a diagnosis...and yes - here's to us both getting some answers. I shall look out for your postings.

Heatherxyz profile image
Heatherxyz in reply toSpicer21

Hi Spicer21,

I'm new to these forums and have ongoing health issues which could be Hughes. I myself got tested with Medichecks around 4 months ago, and had exactly the same problem you describe! The beta-2- glycoprotein was 20, and flagged up as high, but my doctors report came back normal and so I phoned Medichecks to be told exactly the same thing - that is was an IT error.

When I went back to check, my result was still 20 but the normal range had been changed from 0.000 - 19.990 to 0.000 - 20, thus putting my result just within the normal range.

Now I feel no doctor will take me seriously and I'm desperate to find out what's causing my ongoing health problems.

Did you get retested?

Spicer21 profile image
Spicer21 in reply toHeatherxyz

Hi Heather,

That's very odd and annoying, isn't it? - Medichecks need to get their systems in order, what with messing us about like this when they already know that there's a problem with the way the results are being presented.

I didn't pay to have the tests again - The reason for this was that I have gallstones issues and went for a pre-op assessment at my local hospital re having my gallbladder removed. I told them about the livedo reticularis on my thigh (livedo can be a sign of blood clotting problems) and they retested me and it came back negative. (They only did this because of potential clotting issues happening post surgery, otherwise I'm sure they wouldn't have wanted to know about me suspecting that I have Hughes.) As my gallbladder issues have calmed down I've cancelled having an op in the hope that if I'm careful with my diet I'll be able to avoid having my gallbladder removed.

I'm now considering seeing a specialist who I know is open to diagnosing Hughes and Lupus on signs and symptoms alone, i.e. without the patient having the usual associated antibodies in their blood - the patient being 'sero-negative'. I'll pay to see them privately first and then try to see them on the NHS if I get diagnosed by them. If you want a couple of names and can get to London, I'll let you know who you could consider seeing - Private message me about this if you do as I don't think we can name names on open forum.

MaryF profile image
MaryFAdministrator

Agreed, with the different ranges used. MaryF

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