Anti Phospholipid syndrome
Printed From: OHbaby!
Category: Support
Forum Name: Coping with infertility
Forum Description: Have you been trying to conceive unsuccessfully? Dealing with primary or secondary infertility? Get support, advice, and help coping here.
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31927
Printed Date: 29 April 2025 at 1:49am
Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com
Topic: Anti Phospholipid syndrome
Posted By: anon12345
Subject: Anti Phospholipid syndrome
Date Posted: 26 February 2010 at 3:40pm
|
I have just found out today that I tested positive for Anti Phospholipid syndrome a year ago. I am not sure what to think or how to feel about this. Has anyone been tested positive? Have you since gone on to have a healthy pregnancy and baby and if so what did you do to fix it?
We have been trying for over five and a half years, we have had six babies not hold, after three years of many tests I had surgery for endometriosis, after three babies not holding we went to a natural fertility clinic a year ago. I was told I had an anti body from the endo and this was killing my babies but did a specific detox and took reishi. I believed this was simple and would be an easy fix. We have since had three more babies not hold. My nurse told me she suspected the APS and I asked my natural fertility specialists who said I was tested a year ago and it was positive. I guess in the onslaught of it all I had not picked up on what it was. Anyway looking to get tested again from the doctor and then take it from there if still not sorted. Feeling a little uncertain though so would appreciate feed back if anyone has experience. |
Replies:
Posted By: Shezzey
Date Posted: 26 February 2010 at 5:50pm
|
Hi Tal.... you have been through a tough journey and admire your strength and determination through it all.. well done. Antiphospholipid syndrome is a blood clotting disorder that can be treated by taking low dose aspirin and/or heparin to thin your blood out. From what i understand, once a woman gets pregnant their blood clots more and prevents implantation or oxygen supply to the embryo, resulting in a miscarriage. I am surprised that that neither the GP nor Fertility Clinic advised you to take aspirin or if it is more severe, heparin or some form of blood thinner. http://www.bbc.co.uk/health/conditions/hughessyndrome1.shtml - APA or Hughes Syndrome http://www.womens-health.co.uk/antiphos.asp - APA reading I think what she is talking about when she says you may have an antibody developed from the endo, is Natural Killer Cells. These are an immune reaction to the embryo, where you body treats it like an "invader" for lack of better words. This treatment requires more stronger treatment and can be prescribed by your Fert Specialist. http://www.metro.co.uk/news/813928-miracle-mother-has-baby-after-18-miscarriages - Here is a article by someone who conceived after having NKC's There is a recurrent miscarriage clinic that can investigate and give you treatment for future pregnancies. Best Wishes for you
|
Posted By: Shezzey
Date Posted: 26 February 2010 at 6:59pm
|
ps. you can get low dose enteric coated aspirin from any store... one brand name is Cartia and it is only 100mg |
Posted By: anon12345
Date Posted: 01 March 2010 at 8:35am
|
Thank you so much for the links and words Shezzey!!!!!
Well I have copied what I wrote to the CPP girls to update you... As you know on Friday I found out from Lisa I had tested positive for APS February last year. In her e-mail she had suggested it would be beneficial to be tested again to see if it has gone or whether they need to be more aggressive with herbs. She was reluctant to do the aspirin but could be a last resort. I e-mailed my doctor explaining the situation and asking to be tested again as I just wanted to move forward. He phoned me straight away and asked if it was the tests Loula from the Natural Fertility Clinic had requested early last year, I said it was and he looked over them and told me that the way they determine that is by two tests - I was negative for lupus and my other one was zero, so he is unsure how they can say I am positive for it based on those results. He also said that you either have it or you don't and that nothing takes it away. He suggested we make an appointment with FA or the miscarriage clinic to get some medical answers and move forward in that way. He was happy to fax results to anyone who needed them or do anything we needed as he really felt for us in this. Poor guy had to deal with me being in tears a few times. I got off the phone and was upset. I wanted to phone DH but he was in a meeting for two hours and couldn't be reached. I didn't want to phone my three close friends as one was in the midst of chemo treatment with her husband last week, the other had just announced being UTD and was already feeling for me and the other was at work and super busy. Instead I read up on the internet and baked a cake while the tears streamed down my face. I was upset because two people were telling me conflicting things. Who was I meant to trust, who was right and who had the way forward for us? I was frustrated because if I were positive why was I not told how serious it was, why had they not been aggressive with herbs in the first place and why had I lost three babies in the last six months for nothing. If I am in fact negative then what is going on and how can we actually get to a point of being able to hold a baby? I was meant to be taking a back seat because everything was meant to be dealt with and working well, but maybe that is not the case. Anyway DH got home, had a cry and vent to him. He was so angry and wants answers. But with it being the weekend all we could do was push it to the side and wait for this morning. The plan is to get Loula and Lisa to explain it further and see where they are getting the information and why things have not been more aggressive and so on. Then from there phone FA and see if they are able to get us some assistance in it all. From there get a prescription for aspirin and take it regardless, we feel at this point what can it hurt. We are both so tired and sick of this journey. I feel like having a baby is so unattainable right now. I know that if I look at it all logically the last year is not a waste as we have achieved a lot and fixed things. I know that doing the natural way was good for us as FA in Hamilton could only offer IVF and that is not what we wanted. It can and will happen in the right time. But with emotions in the way it's not the easiest to see. To help matters I am on day 33 with no sign of AF, no sign of BFP and we are both frustrated that my body is playing games with us at this particular point. .....at this stage I am unsure if I have APS and am just needing answers and then will figure out a way forward. |
Posted By: anon12345
Date Posted: 01 March 2010 at 12:54pm
|
Well I heard from Loula and it all made sense where she got her results from and I am happy with that side of it. She wants to do two more tests and depending on the results put me on aspirin and herparin so will see how it goes.
My doctor is not overly keen to do the blood tests and is wanting things to be under Fertility Associates and not Natural Fertility Clinic. I am just waiting to hear how we will need to proceed. So still unsure but way happier and relaxed. |
Posted By: Kazzle
Date Posted: 01 March 2010 at 1:37pm
|
Hi Tal,
I have APS, and i only found out i had it after 4 miscarriages. I was orginally through one of the local hospital, who were useless, i then went to Fertility Associates, who told me that there was nothing wrong with me and that there was nothing they could really do and it was just "one of those things" So i got a 3rd opinion, from the person who use to rung the recurrant miscarriage clinic here in wellington (which is now closed), and he looked at my results from the hospital and promptly sent me to have more bloods, and it was then it was discovered i had APS. My first blood result was 19 and anything 20 and over is classed as APS, so i should have been retested before i saw him. I feel pregnant about 2 mths later, and from day dot i was on clexane injections once a day until 24 hours before my elective and i never had any problems at all apart from having a small baby. I can sort of understand how frustrated and up in the air you are feeling, having been down a similiar path. Dont give up hope you are ment to be a mummy and that dream will come true soon. *big hugs* and i hope you get some answers quickly ------------- http://lilypie.com"> 
http://lilypie.com"> 
|
Posted By: anon12345
Date Posted: 01 March 2010 at 1:47pm
| Thanks Kazzle, very sweet of you to share your story and to encourage me like that! |
Posted By: Shezzey
Date Posted: 01 March 2010 at 3:29pm
|
Tal.... I am sorry you had a terrible weekend worrying and crying about this.. hugs to you I think maybe ask your GP can do a referral letter to the miscarriage clinic so that they can give do specialist testing and give you specialist treatment once you are pregnant. It will be cheaper if he refers it, rather than you booking privately. I think you do have to have to have a series of tests to diagnose it, as opposed to just one blood test. Maybe let your natural fertility specialist help your body prepare for pregnancy but let the specialists deal with the APS (if you have it). With your determination I know you gonna be a wonderful Momma
|
Posted By: anon12345
Date Posted: 01 March 2010 at 3:34pm
| Thanks Shezzy! I will certainly keep that in mind as we have the blood tests. I am picking up the form from my doctor this afternoon. When the results come will discuss it with him and move forward accordingly. Whatever has to be will be and we will cross all the bridges that come as they appear in the road. |