Tests - Just find out something that could be significant

[Loubilou09]

Hi my history is one MMC at 12 weeks (foetus shows six week gestation). Daughter 7 years ago, early miscarriage X 2 - went to clinic at hospital who did offer me tests but really put me off as told me that as I had my daughter nothing wrong just bad luck. Pregnant again with no medication started clotting at 12 weeks, my son died at 23 weeks and I nearly died to, 4 blood transfusions. Then had full screen tests done which showed nothing conclusive but was told to take aspirin and folic acid. Pregnant again in March and miscarried 1st June at 12.2 weeks. I am due to go back to the consultant next week.

I have emailed consultant and asked her for a copy of my bloods from two years ago so I could look at them myself, I also rang her secretary and have got nothing so rang GP and managed to get a copy of a few things but obviously not all.

One clearly states Anti-nuclear Antibodies Homogeneous pattern 1:160 titre suggest re-test in 3 months.

Reading up on this it is very indicative of LUPUS. Lupus is not an easy disease to diagnose it is not a simple Yes/No answer, however the majority of Lupus sufferers have antibodies (number is irrelevant) and they are in the Homogeneous pattern. Antibodies fluctuate at different times so that is why they suggest re-testing. In addition some (not all) Lupus patients suffer with APS which can be tested by checking your anticardilipin antibodies, mine at the time said negative - however I understand these fluctuate.

I have a copy of the letter written by my consultant to my GP which clearly says "interestingly autoimmune screen did detect some anti-nuclear antibodies in 1:160 titre". And that is it she does not say anything about getting re-tested and neither does the GP, yet it quite clearly says on the blood test result that a re-screen is suggested.

Annoyed? Oh yes....

My heart goes out to you. You have every right to be annoyed.

I have successfully carried 4 children with 4 second trimester miscarriages interspersed among them and the fact that we have children is the number one reason given for not retesting despite similar findings in my bloodwork.

It is almost as though the potential for fluctuation in the results is not being acknowledged.

I am especially sorry to hear of your recent losses. It is particularly agonizing when you fear that they might have been avoided to say nothing of the risk taken with your own life. and for you.

Oh Cadmum, how distressing for you too and boy do I admire your courage, having 4 second trimester losses is heartbreakingly distressing and must be almost unheard of.

A few things are starting to make sense a bit for me, consultant took a load of bloods this time to "look for antibodies" she didn't say what but she said it was because I had so many blood transfusions. Makes me wonder if she was double checking the Lupus ANA's and the anticardiolipin's again...
Personally I am going to book an appointment with Mr Hughes himself. Let's see what the Lupus/Hughes expert decides.

I am annoyed on so many levels it is frying my brain. With the two early losses there was also an implication that I had imagined the positive pregnancy test and they were very much written off 4/5 years ago and have been since. When I went through my history with my consultant who I paid to see privately she wrote them off as nothing. I also rang my consultant this time and said should I come to her as a private patient and she said no - see me under the NHS. Also when I went to her privately she dismissed the blood clotting in my fifth pregnancy as really bad luck. I was more than happy for private consultation and to pay for it but took the experts opinion. What really annoys me is that shouldn't they let me decide if I wanted to fall pregnant again without fully knowing the risks and fully testing me to see if I do indeed have Lupus, there has been no Lupus referral, no checking to see if I have other symptoms, nothing. Also in my fifth pregnancy I went to the consultant at about 16 weeks and on the day I had a blue finger with a throbbing vein, this had happened on a number of occasions and I thought it was raynauds. Again written off as nothing...raynauds is an indicator of Lupus.

I am glad that the consultant is taking bloods and (from the sounds of it) listening to your concerns.

4 second trimester losses have been outrageously distressing. I only enjoyed the 12 week sigh of relief with my first two way back when I was optimistic and incredibly naive...

Part of the problem in my case is a lack of continuity. We have moved several times and each time, I need to start from scratch with an OBGyn. With my lastest loss (20 weeks in late January) I was unable to take the recommended low dose of aspirin due to a low lying placenta... I will never know if the loss is down to clotting issues or the bleeding placenta. It does make me hesitate to try again as I required a risky C-Section to deliver as I was bleeding internally.

I really feel for you, Lunaticfringe. You are so right that the attitude is very complacent if it is 'only' the baby is lost.