I am writing all of this down as I have a strong belief that our learnt information, experience and sadness can be wasted unless we share it. Personally I don’t want the pain I have endured to go to waste.
After 5 losses I knew it wasn’t “just one of those things”. My 3 older babies were not miscarried they were termed as “mid trimester intrauterine fetal deaths”. So there was no bleeding just a very still baby on ultrasound.
I had really felt like something was wrong. I was "jollied" out of feeling that way by my careprovider and those around me. I didn’t listen to the voice inside me (the one we all have) that seemed to keep coming back to needing some medication. I had read extensively about the use of prednisone, heparin and asprin in recurrent fetal loss. Still I deferred to the voices of these other people.
Something I have learnt is your voice needs to be heard. Really hear it and no matter how insane others around you think you are go with it...
Another thing I know is that you need to research. You need to know what is going on in your body. You need to try and understand the tests and what they mean. I know this is hard for people who do not have a medical background but this is your body and your baby and you need to have knowledge. I think, for me this may be part of the journey and uncovering information and knowledge and understanding it can be so very empowering.
I have learnt some things that I would like to share in the hope that another woman will hear and she may learn something that may help her and her own personal situation. Or maybe someone without this sadness will read this and learn just something that *****s her ears and may help another...
Recurrent miscarriage or recurrent fetal death is termed only as such after you have had 3 consecutive losses before 12 weeks or 2 after 12 weeks. Many care providers will not investigate until you have fit this criteria.
However, you can demand to have tests and if your doctor won’t test you can choose to find a doctor that will. Try not to be afraid of asking for what you want or believe you need. Is that embarassment going to matter in a years time – likely no but what you learn may help you...
If you have had just one late loss and that baby is found to be chromosomally normal then I urge you to insist on blood work. Babies don’t just die for no reason. No matter what the old lady next door or great Aunt Bertha tells you. Maybe a one off later loss is due to a cardiac or organ condition – that is possible and probable. However have tests to discount any other problem before you believe that the death of your baby was “just one of those things”.
These will make it more likely that your blood will abnormally clot in pregnancy. Pregnancy is a hypercoagulative state. Meaning it clots more than usual. If you have an inherent disposition for clotting due to one of the below pregnancy will make things worse. Many women do not know they have a clotting disorder until they suffer from the loss of a baby.
Thrombophillia’s are many and varied but the most common ones are these:
antithrombin III deficiency,
resistance to activated protein C (factor V Leiden),
protein C and protein S deficiencies,
prothrombin gene mutation,
MTHFR gene mutation
Factor V Leiden
FVL (Factor V Leiden) increases the risk of venous thrombosis (clots to a blood vessel) 3-8 fold for heterozygous (one damaged gene inherited) and substantially more, 30-140 fold, for homozygous (two damaged genes inherited) individuals.
I believe that around 5% of the caucasion population have this disorder. Many practitoners believe that being heterozygous for factor v leiden does not make you at higher risk for fetal loss.
After all I have learnt I would debate this with my care provider and seek out more information.
Another cause for recurrent or late loss is antiphospholipid syndrome. Under normal circumstances, antibodies are proteins made by your immune system to fight substances recognised as foreign by your body Eg: bacteria and viruses. Sometimes the body's own cells are recognised as foreign.
Around 2 percent of the population have APS and the symptoms are commonly sore joints and tiredness – common symptoms for autoimmune disorders. However many people have no symptoms and it is only when recurrent miscarriage occurs or a late fetal death that tests are done.
In antiphospholipid syndrome the body recognises phospholipids (part of a cell's membrane) as foreign and produces antibodies against them. Antibodies to phospholipids can be found in the blood of some people with lupus, but they are also seen in people without any known illness. Lupus anticoagulant and anticardiolipin antibody (ACA) are the two known antiphospholipid antibodies that are associated with recurrent pregnancy loss.
To be diagnosed with Antiphosophlipid Syndrome you need to test positive for the lupus anticoagulant or to the anticardiolipin antibody on two separate occasions a couple of months apart. You also must have a history of thrombosis (a clot in one of your blood vessels),a history of thrombocytopenia or recurrent pregnancy loss.
It has yet to be proven but many researchers think the Antiphospholipid Antibody Syndrome may exist in a state of remission or exacerbation similar to other diseases such as lupus or rheumatoid arthritis. This means you could have periods of times when the antibodies are active and times when no antibodies can be found.
One of the routine tests for recurrent miscarriage or fetal death should be anticardiolipin antibodies.
Homocysteine is an amino acid, which is now considered a risk factor in several disease states. Some studies have looked at recurrent pregnancy loss in women with folic acid deficiency and elevated homocysteine levels.
Folate is a necessary nutrient for affective motabalisim. Years ago, it was found that drugs which blocked folic acid metabloism led to pregnancy loss. Therefore an association appears to exist between low folate and pregnancy loss. Homocysteine and folate metabolism are inter-related. The risk of recurrent pregnancy loss was found to be higher in patients with elevated homocysteine levels and low folate levels. It was suggested that folate supplementation may decrease the risk of miscarriage.
Many women are put on high dosage folate after a late pregnancy loss or recurrent miscarriage. This is why. Many women talk of concern that the folate dosage is so high 5mgs conversly many women take a 5oomcg daily doseage. Folate is water soluable and your body will excrete what it doesn't need.
Folic acid is crucial for proper brain function and plays an important role in mental and emotional health. Folic acid aids in the production of DNA and RNA, the body's genetic material, and is especially important during periods of high growth, such as pregnancy. Folic acid also works closely together with vitamin B12 to regulate the formation of red blood cells and to help iron function properly in the body.
Folic Acid works closely with vitamins B6 and B12 as well as other nutrients to control blood levels of the amino acid homocysteine.
Recent studies brings into question whether there is a connection between elevated homocysteine (and, therefore, folate deficiency) in the mother and Down's syndrome in the child. This is an interesting connection that is currently being studied further.
If you have recurrently miscarried having your homocysteine levels checked would be important. Homocysteine levels are not accurate unless you have been fasting for 8 hours (water is allowed!).
Many practitoners will put all women on high doseage folate who recurrently miscarry. However many do not also advise the inclusion of B6 and B12. I believe the recommended doseage of B6 is 100mgs and B12 50mcgs.
Interestingly folate rich foods and herbs have been age old treatments for women threatening to miscarry or who have a history of pregnancy loss...
Chromosome abnormalities are known to be the single most common cause of miscarrige. By far the majority of chromosomal abnromalities are trisomies. In the case of these types of chromosomal abnormalities parental chromosomes are usually normal. In these cases the risk of reoccurence is thought to be at around 1%.
In up to 7% of couples with at least 2 losses one partner carries a balanced chromosome arrangement. The most common is a translocation which simplified means that part of the chromosome has changed places and gone where it shouldn’t be. When this happens the chromosomes have difficulty pairing up and dividing. This means that the developing baby has an unbalanced amount of chromosomal material. These imbalances are usually lethal to the developing baby
It is quite possible that the couple will have healthy children. In fact a higher incidence of chromosome rearrangment has been found in couples who have experienced both recurrent miscarriage and viable pregnancy than in couples where no live children have been born.
When only one parent carries a chromosome rearrangement the chance of spontanious miscarriage is around 25 – 50 %
Karotyping should be carried out on both parents when there is recurrent miscarriage or late fetal loss. This is a simple blood test taken from both parents. This will rule out the above as a cause. Ths test will take about 6 weeks for a result to be made available.
This is a fairly controversial area and one that many doctors poo poo. However, intellectually it makes sense to me.
The immune system is composed of more than 30 types of white blood cells.
Lymphocytes, particularly B-cells (antibody producers), T-cells (helper and suppressor) and killer (NK) cells have been the focus of intense research interest to the discipline of reproductive immunology.
NK cells are responsible for protecting us from invasion by bacteria, viruses and foreign bodies, and rejecting organ transplants.
The fetus contains foreign genetic material coming from the father, but in normal circumstances it does not get rejected. However, in some women these NK cells may reject the fetus and cause a miscarriage either by being high in numbers or by abnormal hostile activity.
This problem, as most autoimmune disorders, can switch on and off, therefore some of the women may have one or more normal pregnancy outcomes as well as recurrent miscarriages.
There is a special class of NK cells (CD16-, CD56+) in the placenta that promotes fetus survival. Opposing is another group of NK cells (CD16+, CD56+), if these opposing cells are active they are toxic to the placenta and may cause a miscarriage.
The same cells secrete tumor necrosis factor (TNF) which can destroy the placenta.
Implantation of embryos into the mother's womb is a complex process involving several factors. Pregnancy may fail when these events are not well synchronized.
Therapy aimed at calming these immune activating factors should, theoretically at least, encourage fetal viability.
The NK cell is the most abundant immune cell infiltrating the womb implantation site. In a previous study, an elevated percentage of peripheral blood NK cells were associated with recurrent failed IVF-ET treatment cycles. Another study showed that increased peripheral blood NK cell toxicity was associated with an increased rate of recurrent failed implantation after IVF-ET treatment. More recent studies have confirmed elevated NK cell CD69 expression as being associated with recurrent miscarriage and infertility of unknown reason.
Something also to consider is that you will see from all of this information above that an autoimmune response is a common cause for recurrent miscarriage and fetal death. In fact more than half of all causes of recurrent miscarriage and fetal death are either immune or coagulative. Autoimmune disorders can lay dormant for years until they have a trigger. We don't necessarily know what those triggers are. Some suggested ones are environmental - poisons, insecticides, a particular ingredient in a cleaner... Who knows maybe it's none of these but we do know there has to be a trigger.
Sometimes pregnancy can trigger these responses on it's own. However that doesn't account for all of those women who have had successful pregnancies and then endure a fetal death or recurrent miscarriage.
You will see from the above that immune disorders often cause a coagulative response.
I urge every woman who has endured the pain of losing babies to sit quietly and write down everything that you can think of that could be pertinent. Rashes, sore joints, unexplained fatigue and headaches. Family history of arthritis. Anything! Talk to your familiy members.
I urge you to gather opinions. We get 3 quotes when we need to fix the car and this is so much more important. Go to 3 separate practitoners. Go armed with your pathology which you can have released to you from freedom of information.
Write your history down as clearly and as accurately as you possibly can. If you are not sure something is relevant write it down anyway. Take this with you or better still send it in advance of your appointment so the doctor has time to read it before your consultation.
If you have access to a reproductive immunologist seek out an appointment. Many of these guys do phone appointments for those of us that live outside Melbourne or Sydney.
Do not believe “it’s just one of those things” because maybe it isn’t.
Remember there is much that the medical profession doesn’t know. You and me and the woman next to you on the bus could all have a condition that is yet to be named.
In fact I am sure I have. I am sure within the next 10 years there will be a name for this thing that has taken my babies.
If there is no name for what is happening to you discuss treatment with your doctor and the ones that you will “interview”. A study recently published in the American Society for Reproductive Medicine has shown that 94% of the women in this study who had endured recurrent miscarriage (secondary or primary) had a successful outcome on anticoagulant therapy.
In excess of 80% of women who have endured late loss or recurrent miscarriage go on to have a live healthy baby when they are medicated as indicated by their condition.
Wonderful, Wonderful, wonderful, this is great and the same page that I am on. I agree with all that you have written and it takes for us as women to push all these theory. This is how we get answers. Never give up!!!
You made my day!
Last edited by dream; November 29th, 2006 at 08:20 AM.
Deb - eloquent as always. I hope this gives those women without our background a starting point from which to proceed. We may be the medical professions headache but we can be reassured we are doing everything we can to grow our babies healthy and strong.
Could you check the CD16 and CD56 data. I think the CD56 requires one to be negative but I could be wrong.
Thanks for your feedback Michelle - Let' hope this helps someone...
I am pretty confident what I have down is correct. Further to that I believe from my conversation with Dr Sacks that NK cells (CD16+and CD56+) are above 20% this is when the recurrent miscarriage problem begins...
Dream - I am glad you concur - I am so grateful that you are around to share your knowledge. I truly believe that I dont' want my babies to have died in vain. I am hoping someone will be helped.
After what I have researched I believe that there is a really strong argument to consider a relationship between your arthritis and recurrent losses.
I am so sorry for the pain and suffering of saying goodbye to your precious babies.
I hope at some stage you can conceive again and take home a beautiufl healthy baby...
Deb - I have no idea about NK. Just confused about the bit below. Are both the CD56 meant to be + or one + and one - like the CD16?????
"There is a special class of NK cells (CD16-, CD56+) in the placenta that promotes fetus survival. Opposing is another group of NK cells (CD16+, CD56+), if these opposing cells are active they are toxic to the placenta and may cause a miscarriage."
I find the information fascinating and reassuring to know I am not alone and that others have questioned the treatment they have been offered. I didn't challenge it with Caitlyn - and it may of may not have made a difference, but maybe it would have. *alf* now has the benefit of hindsight.
Just a quick one must go and pick up DS from school, but Kerry there is a very strong link between artritis and R/M as Deb said. There is a specialist in Melb who deals in this, my Dr S is consulting her as to the IVIg im going to try. Not sure of her name or details but I will get them and pass info once I see him next week.
So so sorry for your loss, lets hope all this info can help you in the future!
Yes, that's right Michelle both CD56 are positive it's just the CD16 that has a differing +/-.
I believe, that what occurs is that the opposing NKcells attack the placenta. I also believe that how early the miscarriage occurs is often due to the large number of NK cells.
It is thought that by about 20 weeks of pregnancy there are almost no killer cells left so this is not an issue. It is thought that NK cells most often cause early losses (before 12 weeks) though it's possible that they could contribute to the later losses if the level of circulating NK cells wasn't quite as high. This would make sense to me as the function of the placenta is really called into action at around 13 weeks...
This is why for women who have NK cells prednisone and asprin is taken preconceptually. (in fact for many autoimmune disorders of pregnancy the treatment is preconceptual) It is believed with women with an NK cell issue the hostility begins from the word dot. So as soon as conception occurs the reaction commences.
As you know the preconceptual asprin aids in implantation and also helps the platelets to be less "sticky" so this is where the asprin plays the early part.
Clexane is often commenced at ovulation but I have seen studies that don't support this and prefer to start from a positive preg test. I believe Dr S begins clexane when he can see a sac on u/s at around 4.6 weeks (to rule out ectopic pregnancy and the issues if clexane is on board).
My previous doctor argued with me (how dare him!) that if prednisone worked for everyone everyone would need it. However, it has to be remembered that clexane also has a mild autoimmune inhibiting action and this combined with asprin can be enough for many women.
I personally don't want to risk it what if I fall in the 5 percent of women that need the prednisone? I will commence my prednisone on Tuesday next week just prior to expected ovulation and will take it until I confirm pregnancy or a period. Of course if I do conceive I will stay on it! I believe that the prednisone doseage begins to be decreased at around 20 weeks until you are weaned. It is felt and it seems that it is usually right that the prednisone has little benefit after 20 weeks. However, I would need to look into this more to feel comfortable. I am only doing this as you know as a precaution. I don't know if I have NK cells as I haven't had the endometrial biopsy done (this can only be done by Dr S in Sydney).
Most women test negative for serum NK cells even if they have uterine nk cells on biopsy. Dream I believe tested positive with serum so her NK cells are quite prolific I think (help me out Dream what were they do you recall???)
In my case I believe I have something that is mimicing antiphospholipid syndrome. I have a history of thrombocytopenia in pregnancy, gestational diabetes, my thyroid is on the lower end of normal my ana is borderline. Everything just scrapes in. I believe that in my personal situation that I have had some type of funny autoimmune thing happening for a long time.
When I was around 14 I developed severe swelling to all my joints which made walking almost impossible and extreme fatigue. I tested neg to all suspected things like RRV, Dengue etc etc. In about 6 weeks it cleared but since then every few months I develop a ring like rash on my torso that isn't itchy but is raised. (reminds me vaguely of the butterfly rash of SLE [lupus])
I have thought this for a very long time but I didn't follow through I just listened to my doctor and not my self.
So, this time I will have all guns on board and I feel pretty confident that I will get a take home baby or two!
Please know that I am not suggesting that every woman needs prednisone/asprin/clexane.
Deb - your history indicates an autoimmune response as a strong possibility (particularly the intermittent rash part). I too worry about having normal levels that are on the border of normal. Maybe they aren't really normal, and for us that range is different. My thyroid function is one. I happily lose weight with pregnancy (not trying to and not through m/s - just, I assume, an increase in metabolism) but non-pregnant I don't easily lose weight and have maintained a stable overweightness for some time (even with exercise and a healthy diet). My Mum and sister are both hypothyroid so who knows. I won't tell you what DH suggested I try (in a non-pregnant state - not now) but that was him contributing to my naughty self medicating behaviours
Thank you for clarifying the CD16 and CD56. My borderline OCD (just kidding - just my nursing self really ) needed to be sure of the facts and the positives and negatives.
Still makes me wonder how we ever get pregnant and stay that way!!
Just jumped on quickly, got a small window of what teenage years are like with my DS!!! but it's great to hear all this on NK and auto/alloimmume. I can agree with what you have said, it sounds like what I have found out with my research and now putting into practice.
Deb, I had both high blood serum levels and endo levels. Two weeks ago (today ) when my last angel left, my serum levels were the highest Dr S has ever seen, endo still waiting for results. I also had a rash come up BUT only once pregnant which looked a bit like a cold sore but much larger and over my body (arm, tummy & face) this time I only had two small ones on my finger but did get 2 large cold sores on my face which are now only starting to go (Im dropping me pred - now down to 5mg till next week) Alot of my bloods for all that you mentioned where either just outside norm limits or boarderline.
With my prednisone we were going to look at the levels of NK in blood and make some decisions then. I have read that the Prednisone can cause preterm labour and ruptured membranes (would check, it was a late night when found that) And im sure you r going to take that little one home soon.
So much for a quick one - I need a bath and a good nights sleep but wednesdays r hard . Boy it would be great if we did not have to be here.
There was a wide touted study done on prednisone use in pregnancy.
That study was done on about 50mgs of prednisone daily and the prednsione was taken for the entire pregnancy. There was a slightly increased risk of preterm labour and preeclampsia. It wasn't a huge increase but it was definitely there.
For me I will only be on the DR S and DR M recommended 20mgs. One of my good friends here only puts women on 10mgs with good success. However, your NK cells obviously warrant a higher doseage.
I agree that it would be great if we didn't have to be here... However, we are and what wonderful women to share this bumpy ride with!
I hope you had a good nights sleep and here's to 2007 giving us healthy whole babies to take home!
Not Sure If Your Still Checking This But Im Not Sure If My Situation Is Similar To Yours, But I Fall Pregnant Really Easy But When I Get To A Certain Stage My Body Seems To Reject It. I'm Currently With A Fertility Clinic And They Have Put Me On Aheap O Drugs To Maintain My Pregnany (fell Pregnant While Seeing Them, Currently 8wks, My Danger Preiod Is Now To 16wks). If You Would Like To Know More I Will Keep Looking At This Thread To See If You Repky, If Not I Have Listed My Own Post On " Pregnant After Miscarriage" Under "i'm Finally Pregnant" Rebecca1980. I Ahve Listed All The Drugs I'm On, Also They Found Out My Cervix Is Only 2.4 Instead Of 3.3, They Think Thats Why I Had My Daughter At 31wks 1d, So They Gonna Monitor It And Meybe Stitch It.
Thanks Regards Rebecca1980
Currently 8wks Preg
Congratulations on your pregnancy Rebecca. I would love to hear more of your story. If you feel comfortable you could pop into Pregnancy After Late Loss/REcurrent Miscarriage/Still Birth. There is a lovely bunch of women with different stories but similar journeys.
Thanks for that Rebecca and congratulations on being 8w. I will pop into the other thread to see how you are going.
OK update, still testing but I have high levels of NK cells and more likely than not my problems are going to be linked to MVE (Murray Valley Encephalitis) and Lyme disease both of which i had years ago. The MVE caused an auto-immune reaction, similar to RR (Ross River) but 12 years later I still get periodic bouts of it, especially if the weather is hot. In addition I have arthritis and have had since I was 14. I also have EDS (affecting joints) and Sarcoidosis (affecting joints not lungs). These last 2 have only been diagnosed since my OB/GP started investigated causes for my miscarriages. It is all so daunting at the moment and the results just seem to bring moe problems and questions than answers.
Deb, thank you so much for all that info! I have read a lot of that information on the net and suspect I have the lupus/APA thing. I have just been to an FS who has begun testing but she was fairly dismissive. I digress. There are two things about your mail that I MUST thank you for. It reminded me that I forgot to tell the FS about the fact I have been diagnosed with rheumatoid arthiritis in the past, following a bout of glandular fever. So important! (hits self on the head).
Two - you said you can get your pathology results released under FOI? I just had a big argument at my GP as the receptionist would not release my records to me. Unbelievable! I am the patient and I have a right to see them for myself (IMO). Anyway, do you know how to go about this FOI request?
Thanks again, you are so right in all you have said, especially about the three separate opinions.