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Hello
I have just had an UNEXPLAINED miscarriage for the second time and am about to embark on the miscarriage investigation program which is related to Sydney IVF.
I have posted a similar question on the TTC thread, but would love to know if anyone here is pregnant/given birth after doing this or a similar program. In other words, did they find something, did it help and what did it involve?
Would be very grateful for any responses
WTH
WTH - Sydney IVF has a great reputation - so I believe you are in good hands.
It has to be said that in a high number of cases of recurrent miscarriages a cause cannot be found. This is difficult to hear but is the reality. That doesn't mean that there is nothing amiss - just that we don't yet know what it is or have a name for it.
Lupus has only been "diagnosable" since the early '80"s yet many sufferers were afflicted before then (as an illustration).
Generally speaking recurrent pregnancy loss are treated with anticoagulants - sometimes coupled with steroidal drugs. This is because in the absence of any positives recurrent loss is generally thought to be autoimmune - the body seeing the pregnancy as a "foreign body" and thus it fights it. This response is believed to occur prior to 12 weeks - in the very early days of pregnancy when the placenta is forming. This accounts for why for many women with an autoimmune response the baby is not lost until the 2nd trimester.
The growth that occurs in the first trimester is astounding - if the body has begun to "fight off" the pregnancy this begins at a cellular level early on and sometimes does not manifest as a loss until much later. :(
NK cells is a pet of Dr S at Sydney ivf. I have learnt a lot from him. He does not crow about his findings but is intelligently excited by some of what has been found. NK cells usually manifests as a loss before 12 weeks. An endometrial biopsy is required by Dr S to be definitive about this.
There are no guarantees WTH. You need to go into this knowing that it is big and scary - however also believing that there are many of us (me included!) that have had success after many many losses.
I hope I have helped some - fire away any more questions. :hug:
Flowerchild - I love your posts! You are so knowledgable (though I know you went through a lot of pain in the drive to find that knowledge). I guess I am now on a similar journey.
You will be very pleased to know I am meeting with Dr Sacks separately next week (in addition to doing the investigations). I think he is with IVF Australia now. I read what you, and others here have written about him and was very motivated. I have been typing up a page about my pregnacy history (including vitamins, hormone levels, etc) as we speak. Wondering if I should send it to him in advance.
So here's a question: Does the endometrial biopsy have to be done on a certain day of my cycle? (I will be on Day 15 from my procedure when I see him). I wonder if I have to wait for my body to settle down before testing. Hope not...
So yes, I am double-handling the experts, but I really do not want to waste anytime. I am already confused. My OB is suggesting I will end up doing IVF with PGD, while my FS reckons Clomid could be the go. Of course, it all depends on whether any of these tests lead us anywhere.
Thanks for writing to me. I know you are in high demand on here and feel special when you give me your thoughts.
WTH x
Yes, and I believe it is needed to be done mid cycle. I also believe that TTC that cycle would not be advised. The procedure is not painful and is done in the clinic - Dr S has a pathologist who works with him & counts the NK cells personally - so it's a fairly time exhaustive procedure. NK cells are there for all of us - just when there is an over abundance is it a problem.
You will be given some fairly strict instuctions if I know Dr S ;). Sometimes the meds have to be commenced prior to pregnancy or at least during the luteal phase of your cycle each month.
If I may add. If NK cells is the issue the ivf pgd process will not avoid miscarriage. So, it is important that you rule the NK cell issue out. NK cells basically fight off the pregnancy so it doesn't differentiate on how the pregnancy was conceived iykwim???
You also mentioned that one of your babies was female and that the docs questioned the validity of the test???
So you may understand a little more. When a currettage is done and the baby is female it cannot be clear weather the chromosomal material came from the mother or the baby so therefore a chromosomal defect cannot be completely ruled out. It is possible that the chromosomes were yours and not your babies. I hoep that makes sense.?
Flowerchild - that is what my OB said about the validity of the test. This will sound morbid, but I am actually hoping this little bubba had a sporadic, non-inherited chromosonal error. There would not have been anything I could have done to have prevented it. That way it would not necessarily be related to me or my body and we might have a better chance of TTC again.
Do you think Dr Sacks will do an biopsy on the spot of my initial consult?
Am I going to get in a bother going through him and the program at the same time? Oops!
You probably need to ask the receptionist for an appt that he can do the biopsy in... I would phone and say yiou will be cd15 and could you be booked for a biopsy. Say you have a referral (then quickly get one from your gp! ;)). This will save going back in for the biopsy. Dr S's receptionist will know the how whens and whys about it all. Give her a call and have a chat.
If it were me and I had Dr S accessible I would just see him - I would find it a bit messy going to a few different specialists... :hug:
Flowerchild - thanks for the headsup on booking the biopsy. I rang Kogarah and they have put it as a possibility on the day. Hopefully it can be done this cycle.
You are right about clashing OBs. I am going to be completely up front with Dr Sacks about doing the other program and see what he has to say. I get the impression he is really nice and won't mind. But it may put my local OB's nose out of joint.
Have really appreciated all your advice this morning. One more question: If I had a little girl three years ago (first ever pregnancy), how likely is it that this NK thing could have developed since then? You had normal pregnancies, too, to begin with, didn't you?
WTH x
Like Flowerchild said most of the time you don't get a reason. I was one of those. I don't know if I've given you my story before so I'll post it just in case I havent (if I have feel free to skip this post). After 3 years of trying in my marriage (10 years ago) I suffered an early loss - no reason found. Investigations with a leading IVF FS determined unexplained infertility. IVF recommended. My then husband was not interested at all in that process. We parted 5 years later (and never managed another pregnancy).
Fast forward to two years ago. My new DF and I decided to try for a baby. I felt I had no hope whatsoever as I was over 40 and I'd had no luck in my twenties and early 30's. Nine months later I was pregnant (early loss). I think it was 3 months later pregnant again (early loss again). No reason given for either loss - perhaps a small fibroid but more than likely it was just my age. Chromosonal testing found nothing. I was told IVF was my only chance of a successful pregnancy. After the 1st loss last year I was put on a waiting list for a fibroid resection and all the usual stuff they do with a lap before deciding if we should go the IVF route.
I was still waiting for it when I found myself pregnant for the third time in the year. I was off all my vitamins, drinking loads of coffee, drinking alcohol (in moderation), doing everything they tell you not to do when TTC. I was not actively TTCing when this pregnancy occurred. Despite the odds (supposedly about 5% for a successful unassisted pregnancy at age 42 at time of birth) this one stuck.
I guess what I'm saying is don't lose hope if the medical profession can't give you an answer. Miracles can and do happen. My little miracle came along when I least expected it.
It's very possible to develop a proliferation of NK cells - especially as we get older. I don't belie4ve I had NK cell proliferation though. As I said NK cells tend to present as early pregnancy losses - whilst I did have 3 of those it is not outside the realms of "normal" given my age (38 - I am now 41). However, we treated me as if I did have the nk cell issue as time was running out for me. I also had a gut feeling that prednisone was needed for me.
Satya - thankyou for sharing your story. Miracles do happen! :hug:
Satya - yes, thank you for sharing your story. Like a lot of women on this website, I am joining the queue for a miracle.
Flowerchild - WOW. I have no idea what it is but that prednisone seems to come up quite a bit on these forums. I will keep you informed as to how my appointment goes with Dr S, if you like.
Thanks for all your words and wisdom, today, ladies.
WTH xx
Prednisolone is a very powerful steroidal drug. It is a drug that Dr S treats his nk cell proliferation patients with. It isn't something to be taken lightly as it does have some nasty side effects.
It is also used to treat autoimmune diseases amongst other things.
I went through a doctor with Sydney IVF after recurrent miscarriage and I was treated with Clexane, low dose aspirin and progesterone pessaries. It was stressful at the time, but I'm a success story. My baby is 5 weeks old.:D
My doctor started with the blood work and then wanted me to have a laparoscopy and a hysteroscopy after a month or two recovery from my last miscarriage. He started me on aspirin after we got the blood results back and told us both to get lots of antioxidants. I fell pregnant before we had a chance to do the hysteroscopy and laparoscopy:lol: and carried to term. I was monitored pretty closely for the first 18 weeks of the pregnancy, I had to have my first prenatal visit quite early, at 5 weeks I think, and I started Clexane at 5 weeks, and my progesterone started to drop at 6 weeks so I started progesterone then.
I hope you have as quick and successful journey as I have had.
I dont come here but i just wanted to offer hope cause like you and many others i had to scrape for every bit i could get to keep going. I had 6 miscarriages. We never really got any explanation as to why. We did IUI and it ended in miscarriage and our second round has me 28 weks pregnant.
You might like to consider acupuncture too, they have treatments for miscarriage and you can use it to help you with conceiving a pregnancy. I can't help you with recommending someone in Sydney, but perhaps someone here can. The studies and results are very good.
Thanks everyone!
Since my last post on this thread I learned my third loss was a Trisomy 15 (very rare, but completely spontaneous and not compatible with life).
I will be continuing with the program as now two of my three losses have been chromosonal and they want to look further into it.
As it happens, I am starting accupuncture tomorrow. I have always been horrified of needles, but after being a pin-cushion for the last twelve months I am actually looking forward to it!
Gabi - congratulaions on your healthy little buba
Traseal - I can't begin to imagine the painful journey that you have had. Did they do any chromosonal testing on your miscarriages?
Thanks again for your responses
WTH
WTH - I don't have any new info for you, what Deb and the others have said has covered everything, but I just wanted to wish you the best of luck.
Deb, Satya, etc - you girls are a wealth of knowledge and so helpful to those of us who have gone through m/cs just like you have, and you have helped so much. I just wanted to say thanks :)
I cant really offer any educated info, I found this thread very informative too.
I just wanted to wish you all the best and I know how sad and frustrating it can be.
I am pregnant ATM and the doc has put me on metformin to control blood sugar as I have PCOS (insulin resistance) apparently it is quite common to miscarry with PCOS. I thought it was just infertility but I gues I am the exception there, as I can fall pregnant I just cant stay pregnant. Metformin supposedly helps to prevent miscarriage.
Sorry I am rambling Im so tired.
I have two beautiful kids but ITS NOT ENOUGH I WANT MORE!!:P I am one of those greedy people that wants 4 kids.:cryinglaugh:
So there will be hope for us, make sure you push for tests and answers as I was silly and just went with the flow. Make them look into it.
My diagnosis is only a guess so fingers crosed it works!
Best of luck!!
You will enjoy accupuncture, its not like needles and can be very relaxing.:
Thy tested my DF and i for chromosomal abnormalities and we are fine. They never check any of my actuall m/c POC. I did try but the hospital laughed at me. Lets just say the medical system has poorly POORLY let me down. No one wanted ANYTHING to do with me or to offer any help, i was put in the "to hard" basket MANY times. I ended up at Queensland fertility group and they were absolutely wonderful.
You will enjoy the acupuncture I am sure WTH. I love it. Whilst it did not help with the recurrent miscarriage for me - it helped with regulating my cycle and some pregnancy related issues. :hug:
WTH - I too suffered 4 unexplained miscarriages, I was told after my second one that it was "one of those things" and they would begin looking for reasons if I suffered a third. That wasn't good enough for me so I sought the advice of a private ob/gyn. Turns out that I have a number of conditions (MTFHR, Factor V Laden among them) that could have been causing miscarriages on their own or as a combination. When I next fell pregnant my ob had me do 3 early blood tests 48 hours a part which showed that my body wasn't producing enough progesterone to maintain the pregnancy until the placenta was fully developed.
She had me taking high doses of folate, daily aspirin, vitamin B etc while TTC and throughout pregnancy and progesterone pessaries until the 12 week mark - the end result is I now have 2 beautiful children, the second of which I gave birth to only 3 weeks ago!
Losing a pregnancy is one of the most difficult things we ever have to face but I believe that as long as you keep searching for answers there is hope.
Hi Lachiesmum
Your email is very timely. I have completed the program and they found I have a double-gene mutation for the MTHFR which may explain my second loss (my first and third were chromosonal). I have actually been taking Megafol for nearly a year, so it did not prevent my second loss. I also take 1000 B12. How much B6 did you need? My homocysteine and folate and b12 levels are all good, so I do not know if I need aspirin or heparin. Am trying to run it by my FS.
I am partway into my first cycle of IVF with PGD to hopefully rule out some of the chromosonal abnormalities. It will give us a better idea of egg quality.
So glad you fulfilled your dream to complete your family. Enjoy your new little one. I am dreaming of giving my DD a sibling. My husband was an only child and he does not want the same for her.
WTH :)