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Lupus Anticoagulant, does anyone have it?

(17 Posts)
jellybeans Wed 05-Sep-07 22:16:33

Hi, I have been told i was positive for this at two tests 2 months apart. I lost My baby at 20 weeks and so was tested. This was my 4th loss (I also have living children too). When I asked what it meant they were not really sure, does anyone have this or know about it? Thanks xxx

3littlefrogs Wed 05-Sep-07 22:30:27

I am so sorry to hear that you lost your baby.

I am not sure if Lupus Anticoagulant is the correct term - are you certain that is what you were told?
SLE or Lupus is one of a group or spectrum of disorders that includes Hughes syndrome and sjogrens syndrome and Rheumatoid conditions. It is a condition that involves the immune system and the clotting mechanism. It can affect all systems of the body and can make the sufferer prone to miscarriages and blood clots (thromboses). There is a large patient support network, and a very good website. i cannot remember what it is called ATM but if you google SLE or Lupus I am sure you will find it. Professor Graham Hughes is the leading expert in this field.

The condition can be managed, but requires expert care. Usually the management involves taking anticoagulant medicine or injections to reduce the likelyhood of developing blood clots.

HTH

3littlefrogs Wed 05-Sep-07 22:37:06

I am not sure if I have understood exactly what tests you have had/results etc, I don't want to assume that you necessarily have any of the conditions i have mentioned.

I would really advise that you go back to the doctor who is investigating your condition and make sure that you have understood correctly. Occasionally there are false positives with some of these tests, and it is really important to double check.

Have you been referred to a haematologist to interpret the results?

Jackstini Wed 05-Sep-07 22:40:05

I don't know much about it but my friend has it and found out after testing after 3 miscarriages.
Can't give you lots of info but maybe a bit of hope as can tell you it is managable. As soon as my friend fell pregnant again she was given daily injections to administer and monitered very carefully - she is currently 24 weeks PG! smile
Hope you can find the info you need JB

jellybeans Wed 05-Sep-07 22:42:38

Thanks for your reply. I was told that I had been tested for 'lupus anticoagulant' after my loss at 20 wks and was positive both times. I asked if this was 'hughes syndrome' she said not neccesarily. I said could this be why I lost DD and they said it can cause any bad outcome in pregnancy but there were no signs of blood clots in placenta etc so will never know. I just don't know what it means, do you think I should go back and ask to see a specialist?

3littlefrogs Wed 05-Sep-07 23:16:12

I am a bit concerned that you have had some tests, but the doctor looking after you doesn't seem to to have adequately explained the results.
It is always difficult to get to the bottom of things when communicating on a forum - it is easy to get the wrong end of the stck.

However, I really do think that if you have suffered the tragic loss of a baby, or several miscarriages, and there is any possibility of future prevention or treatment, then you should be referred to the appropriate specialist asap. Most of these things can be managed, with the right sort of care.

If the doctor who ordered the tests is your GP or gynaecologist, then a referral to a haematologist is the next step - sooner rather than later IMO.

I do hope you get some more information and help soon.

Elibean Thu 06-Sep-07 08:59:20

I'm so sorry for your losses...sad

I agree with 3littlefrogs, the doctor gave you some information without explanation or follow-up, not satisfactory IME.

I had slightly raised lupus anticoagulant antibodies (and slightly raised natural killer cell levels) when tested after 4 miscarriages - its still a controversial area, but I was treated for immune issues in my next pregnancies and had two successful ones in a row.

The doctor I went to was Hassan Shehata - you can find more info on his research/work at www.miscarriageclinic.com. I saw him privately, but a referral to a miscarriage clinic might well provide some similar support - they all tend to disagree with each other, but LAA is one of the issues thats fairly well recognized these days.

Wishing you the very best with it all!

Jackstini Thu 06-Sep-07 10:15:13

Hi Jellybeans - yes I do think you should be referred to a specialist, maybe via a miscarriage clinic to look at the specific way it is affecting you in this area. Push until you get somewhere - you need and deserve some answers and help.
Good luck

Charlee Thu 06-Sep-07 10:17:17

I have Lupus and suffer from blood problems, i had 6 consecutive mc's between my two ds's. Im not sure if Lupus and Lupus Anticoagulant are the same thing though.

jellybeans Thu 06-Sep-07 10:32:42

Thankyou so much everyone, I will push to see a specialist I think xxx

BBBee Thu 06-Sep-07 10:39:30

hi jellybeans

I know loads about this - I was wrongly diagnosed with this condition and acquired lots of info. I know it is not usual but do you wnat to talk on the phone? Would be much easier to put across what I know.

If so email me on:

dim p ledthigh s (at) hotmail (dot) co (dot) uk

and let me know on here if you have.

If you would rather not that is FINE - I completely understand - it is just I recall the state of confusion I was in at the stage you are at and if I can relieve that at all I would feel better.

some people hate the phone or is just inconvient so if not then post any questions on here and I will try and answer them.

BBBee Thu 06-Sep-07 10:42:21

jelly

don't google - lots of scary and inaccurate information on there - and a specialist told me that!

Wilbur Thu 06-Sep-07 10:55:23

Hi jellybeans. I am so sorry for your very sad loss, what an awful thing to happen. This is quite a complicated area of haemotology, and I am not an expert, but I also have tested positive for Lupus anticoagulant, so I can tell you what I know. Lupus Anticoagulant is the correct term, but it is not an indication that you have lupus. Lupus Anticoagulant is a clotting factor in your blood (it was first recognised in patients who had lupus, which is how it got its name, but it a separate issue from the autoimmune disease of lupus itself). The reason I know about all this is that I have inherited a faulty gene from my father which slightly raises my blood's tendency to clot, and while being tested for that I was also tested for LA and something called Protein C. I am lucky in that these factors have not affected my pregnancies, as they often do, and I have never had a DVT. The only treatment I have had was to have blood thinners for 6 weeks after giving birth to dd and ds2. As I understand it, lupus anticoagulant is just one of a number of blood factors that can mean a higher risk of getting a DVT, or having sticky blood (as I have sometimes heard it called). It means that you can get clots in the placenta which can cause miscarriage. I think it's very important that you ask your GP for a referral to the haemotologist at your hospital so that they can decide if blood thinners during pregnancy might help you, and to make sure that you are monitored carefully if you get pregnant again. It seems that many of these test are quite new (certainly the genetic test I had was very new and not everywhere does them) but it is worth trying to see someone who can talk you through and perhaps investigate further. Are you anywhere near London? Both St Thomas's and UCH have specialists in this field, I know.

Sorry for the great long essay, hope it helps.

BBBee Thu 06-Sep-07 11:34:33

great post wilbur - more succient that I could have done!

Wilbur Thu 06-Sep-07 13:38:17

Thanks BBB. There's another mumsnetter around who has the same pro-thrombin gene mutation as me, so I have posted this info before!

BBBee Thu 06-Sep-07 14:45:05

I was thought to have it fo a long while and so I learnt loads about it but not very good at getting it down. My level flucuated so much and nothing ever happened to me so they 'undiagnosed' me in the end.

I went to St. Thomas' too.

jellybeans Fri 07-Sep-07 14:44:29

Thanks SO much everyone, your replies are very useful. BBB, if you wouldn't mind speaking about it, that would be great, I can call you if you like or you can email me, whichever? I will email you very shortly. THANKYOU again x

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