Interesting appointment with my GP today!

Hi again everyone. I had an interesting appointment today, I've recently relocated due to the trauma of losing my twins last year. I have a new teaching job starting in September at a fab school and now living back close to family. A fresh start. I had been referred by my obstetrician at my previous hospital as I had a 'slightly' positive Lupus Anticoagulant test after the loss, one blood clot in the placenta. Then I had a second round of tests 12 weeks later. At first the consultant said they were negative then she said the more sensitive test was positive. Hence the referral to Rheumatologist. I have now registered with a new GP, had appointment, he looked through my notes and all hospital blood results and said they were all negative. Really really confused. He said my third lot of repeat tests done at the time of an A and E visit for visual disturbance were also negative. He says my visual disturbances are migraines and that because I'm overweight I'm likely to have blood clots in pregnancy (fair point as I do need to lose a fair bit and I have made a good start). He's going to contact my previous obstetrician thank goodness but I'm so confused! Anyone else had test results all over the place?

6 Replies

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  • Hi there, please let us know if you need any papers to send along, sometimes people do end up having periods of negative tests or indeed are seronegative, this paper clearly illustrates this: ard.bmj.com/content/62/12/1... I am pleased that there is contact being made back to where initial investigations started. Please try not to worry, lots of us on here have had similar experiences. Mary F x

  • I'm so sorry to hear of your losses - what an absolute nightmare for you. Hope the relocation is a good idea. The blood tests for antiphospholipid antibodies (aPL) are not perfect which is why there are the three different tests all looking for the aPL: hughes-syndrome.org/about-h... also it's important that you get someone well-versed in APS to read your results. I would wait and see what the obstetrician says, then book an appointment at an early pregnancy clinic as these units are used to dealing with high risk APS pregnancies. Kx

  • Thanks for both of your replies. Much appreciated. I've had all three tests plus the full auto immune screen and all were negative apart from the LA which was negative second time round or so I was initially told. Then they said the Russell Viper Venom test was positive hence the referral. The obstetrician thinks it is pregnancy related Hughes as I'd had no symptoms previously and have only had the visual disturbance in pregnancy plus one still birth and one miscarriage. I just want a clear answer one way or the other. Still taking aspirin as precaution though. I have a history of auto immunity in my family as well as Grandmother had Graves' disease. So, really pushing for the right answers! Doctors really are quick to dismiss it though- I'm beginning to think they think I'm a hypochondriac! But when such a trauma has been experienced it's no wonder!

  • Hughes Syndrome has a tendency to run with Autoimmune Thyroid Disease and Sjogrens as a trio. many people with APS have relatives with MS, Thyroid, RA or other autoimmune conditions.

    You are right many Doctors see a negative result and are quick to dismiss but many people on here know the consequences of Doctors who have ignores seronegative APS, myself included.

    Kates advice is really good and I urge you to take it and get seen by someone who knows their stuff around APS.

    If you go to the red line above and click on Blogs and then on Hughes Syndrome Foundation Blogs you will see one called Patient Day Recording 2013. If you listen to that especially the third lecture about 34mins into the tape you will hear Prof Rahman talk about seronegative Hughes and he explains why blood tests dont always show the antibodies.

    Any other advice please come back to us. xx

  • Hi. I'm so sorry about your loss. I have a friend who is sero-negative, and had problems with her pregnancy - pre-eclampsia, blood clots, etc. She exhibits classic signs of APS, but the blood tests are negative. She is being treated for APS along with several other autoimmune disorders, including MS. Please see the rheumatologist you have been referred to. Look into taking Plaquenil. It helps with blood clots and any type of pain associated with APS. Unfortunately, a lot GPs don't know much about APS. My GP has told me that I am educating her. Good luck.

  • Thank you. I will definitely see whoever I can get a referral for. I think it unlikely that I have other autoimmune conditions at this stage as I've had so many tests (Thyroid 3 times, auto immune screen 3 times, blood sugar, liver, kidney etc) including two MRIs of my brain and an ECG and they were all fine. Just this pregnancy related placenta blood clot and visual disturbance but I will be vigilant about anything else I encounter. Cate

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