What does this mean and how is it treated? Can I still have my fet next month? Have a baby? Did my body kill my babies? I’m really scared 😟 DianeArnold can you shed any light on this for me? xx
Help! Please. Panicking big time. - Fertility Network UK
Help! Please. Panicking big time.
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Tugsgirl
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DianeArnoldPartnerNurseFertility Network UK
Hi Tugsgirl. Oh dear! So sorry to read this. As the result says you must have the blood test repeated in 12 weeks for a definite diagnosis. At the moment it does seem as if you have a blood clotting problem, that is why they have given advice about travel and contraception. It is not telling you that you can’t have a baby, but the FET may not go ahead next month. You may need treatment to prevent blood clotting which can range from steroids to dampen down the problem and anti-coagulant treatment to prevent blood clotting. Just remember you have not got a definite diagnosis yet, and it IS manageable. It might be an idea to try and cut out foods with Vitamin K in for the moment, as they help with clotting, until you know for sure.
Foods that I know of that are rich in vitamin K include asparagus, broccoli, Brussels sprouts, cabbage, chili powder, cucumber, lettuce, oregano, parsley, prunes, spinach, spring onions. I know you will, but try not to panic as you don’t know for sure you have the problem yet. Sometimes during trying to conceive and pregnancy it is just controlled with low dose soluble aspirin/Clexane. Can’t think of anything else to say for now, but do get back in touch if you need to ask more. Diane
This is what I read! But I didn't know about the food thing, that's really good to know
Hi Yes, it's annoying in one way, as the foods that usually are recommended are warned against as they help to clot blood when we bleed! Mad isn't it!! Diane
Yes, it is completely. Bit of a bummer if you happen to love those things too. I eat loads of broccoli
I’ve been eating lots of sprouts and broccoli and even had a bowl full of cucumber as a snack last night after having savoury rice with loads of chopped spring onions in 😞 xx
You wouldn't think these would have any negative impact. I eat broccoli pretty much daily, also spinach too. A favourite meal is plain rice with broccoli and spinach 😐
It’s 💩. You try to eat lots of veg but turns out all my favourite ones are no good for me x
Thank you DianeArnold It all makes sense now. I’ve had hip pain and knee pain for years, even saw a doctor for it but they just prescribed prescription strength ibuprofen. I’m always tired but I put it down to getting older and lazier. I’ve had abnormal periods for years and told various doctors and specialists until I was blue in the face, that most of my bleed is brown not red but they only cared that I was ovulating and regular in my cycles. I’ve started reflexology because of my feet always being cold and because I had chilblains. But why hasn’t this come up as positive before? I’ve been tested for it in 2016. Why is it positive now? Is it what killed my babies? So many questions I have and I’m really scared. I have rang my clinic as fet was due to go ahead in about 4 weeks and we paid £350 for endo scratch last week xx
May I ask, is this a specific blood test or would this flag up in a full blood count? I'm curious as I'm going through various tests for infertility and noticed I seem to have similar symptoms to yourself - constantly cold feet, odd periods with a lot of mostly brown spotting, always tired no matter how much sleep I have, painful knees etc. Easy to put some of these down as unrelated but curious to know how one is tested for this
I’m not sure if it’s a specific test or whether it’s picked up along with other things they test for. Mine was negative in 2016, despite all of my concerns about my period and circulation etc so I’m gobsmaked today. It’s done through a blood test xx
I did some reading up on it and apparently there are quite a few different tests they do. But a full blood count is one of many that can indicate a problem
Oh Vicky, you don't deserve all this, nor does anyone. The problem can arise anytime, it's not something we're born with, but if you do a family search you may find that there have been elderly people who have had strokes. I believe you went to Tommy's in Birmingham, where I know they do in depth screening, but I can't answer why it wasn't picked up before. Your aching joints should have been investigated further perhaps, I don't know, but it has been spotted now, and will be followed up and managed correctly so that you can get to have a safe FET. Thinking of you as always. Diane
Thank you as always for your help Diane xx
xx
DianeArnold what does it actually mean? In simple terms. Google is not being my friend as usual xx
It means that you may have a blood clotting problem that could prevent implantation of a developing embryo, but could also cause miscarriage. It doesn't prevent pregnancy, but you would need support if it is confirmed. You could be prone to deep vein thrombosis even, hence the warning about flying for the moment. Diane xx
Oh my goodness, many of these foods are just the sort of thing we would all be trying to eat plenty of 😕
I know. I love chocolate probably too much but I also love cabbage, sprouts, cucumber, spring onions and broccoli. It’s going to be a very boring diet for me next month (and hopefully beyond that for a good while) xx
I’m panicking now about eating these things too, just in case! Something else to worry about 🤦🏼♀️ I love all these things too. Best of luck with making these changes to your diet and hoping so much they will make a difference to your next treatment xx
Hi Dunla. Just need to careful if you are on blood thinning drugs, as they could counteract their "job". Diane
Hey Vicky. I'm being tested for this amongst a heap of other things. They may just want to put you on a blood thinner like clexane if you have an over clotting problem. Not sure if that will affect your FET or not, your clinic will keep you right hun.xx
Thank you. I’m sorry you’re dealing with it but I’m relieved to hear that I’m not alone. Waiting for my clinic to call me back xx
Would love to hear how you get on! Hopefully you get some answers and it might end up being a positive thing if it gets to the bottom of your miscarriage.🤞 Sending hugsxx
They have rang back and will prescribe clexane and I’m going to have to take aspirin from CD2 until further notice. I just hope it’s enough this time. I’m not sure I can bare anymore losses xx
I have got everything crossed that this will be the answer for you guys, You’ve been through so much xxxxx
It was almost easier to think that there must have been something wrong with my babies but now I have to live with knowing they were probably fine it’s just something wrong with me that caused them to die 😞 xx
I have had the exact same thoughts about my losses... if we’d had steroids back then would it have made a difference? We torture ourselves don’t we xxx
Can’t help it though 😞 xx
I know 😘 xxxxx
Don’t let yourself down that route, you will never know the exact reason those embies didn’t become babies and there was nothing you could have done differently based on the information at the time. There’s no “fault” in this scenario and I truly believe you have to look forward not back, or you could go mad! 💜💜
I know. You’re right. It’s a knee jerk reaction xx
It's positive that there is something they can try so that in itself is encouraging. Glad you have a plan in place!xxx
I don't know enough about this to really give proper advice, but I *think* they may want to try aspirin or another blood thinnning drug. I wish I could remember what I have read about this now as it wasn't long ago I was looking into it. But it doesn't mean you can't conceive or carry to term. It means that with help and different measures taken, you should be able to successfully conceive
I really hope so xx
sorry hun I can'tell shed any light but am sending hugs xxx
So sorry your now dealing with all of this, I had this blood test after my first MMC and my consultant only covered it briefly so can’t offer much advice but am thinking of you xx
I had it (and everything else tested) after our first bfn in November 2016 but it was negative then. I just don’t understand xx
Oh how confusing. I think it’s so unfair they’ve just sent you this with no further information, is this from Tommy’s? Xx
No, results from that test (antibodies against my thyroid) are not back yet. This was a letter from my hospital where I went to the miscarriage clinic in November xx
Oh okay, were you able to get hold of your clinic to get any clarification and about your FET xx
Yes. They’ve agreed I can go ahead with my fet. I’ve got to take aspirin from CD2 and they’ve ordered me clexane to take everyday along side the pessaries and Lubion and something else that begins with a G... I’m to ring back on CD1 and take it from there xx
Really hope it all helps, I know it’s been a massive shock but maybe this will provide some answers. Keeping everything crossed this time brings you your rainbow xx
So sorry to hear this news you must be reeling from the shock of it.
It is good they might know the cause of the miscarriages ( not that makes it any easier). Hopefully they can now put a plan together to prevent anymore losses.
You can conceive and I’ve no doubt that with the right medication you will carry a baby full term 😘
I know it’s a horrible shock but it ia a step closer to having your much deserved baby 🌈
I think @romanluna2015 had this test done and she was prescribed medication and is now about to have twin girls anyday. There is happy outcomes from this test 😘
Wishing you the very best. xoxo
Tugsgirl• in reply to
She’s on my Facebook friends list, I’ll pm her and ask xx
I'm sorry you've been dealt another blow. It's frustrating but the good thing is it has been picked and can be treated accordingly, so you can go into your FET with confidence. I do believe we can develop issues we never previously had at any time in our lives, which could be why it's not been picked up before. Thinking of you. xx
What an incredibly unhelpful letter. Thank goodness for @DianeArnold. At least it has shown up now and not right after a FET, even though it’s still awful timing. I hope you can find all the answers you need. It’s another bump on the journey but I still believe you will get your happy ending xxx
I cant give you any advise but want you to know I am thinking you, and keeping everything crossed you get it sorted quickly xxx
This test is a test I have to have too.
Sorry your in so much shock hun. Diane's explained it really well for us all to get it. The foods thing is crazy but very helpful.
Hopefully when you've had your next test in 12 weeks they'll get your official diagnosis I know it's not ideal. But at least you'll be giving your embie the best chance.
It can easily be treated and you'll be fine best to know these things than not like Diane said it can happen at anytime we're not born with it.
I'm glad your getting answers now hun.
Good luck try keep focused hun you can do this 💪 💗🤗😘
Going ahead with fet for better or worse with clexane and aspirin. If I get pregnant I’ll call Tommy’s straight away as they said they can offer help and support every step of the way with monitoring etc xx
Awwww that's good. Fingers crossed this works out. Nice of Tommy's to help with monitoring. 💗🤗😘
I have a feeling I’m going to need them xx
I would if I was you. Pity they don't have a centre near me 💗🤗😘
It is. There’s only three but luckily one is in Birmingham which is about 60-90 minutes away depending on traffic xx
I know. If I get no where with my hospital. I'll see what hubby says about getting referred. They do lots more tests than standard miscarriage clinic 💗🤗😘
Sorry to hear this but im sure its manageable and its good to know before your transfer. I have a friend who has lupus and shes pregnant albeit not with ivf but at least we know pregnancy is still possible with it. Good luck xx
Hi Vicky I'm sorry your having to deal with this. Sending lots of hugs xx
Sorry i cant offer any advice but just wanted to offer my empathy. Seems harsh to receive that info in a letter without a conversation to explain. I hope u get the clarity u need asap ❤ xx
I’m so glad your are getting some answers so you can move forward and treat the reason why you have had these miscarriages.
I just don’t understand why this wasn’t picked up at your local hospital, all the time, stress and tears could have been stopped.
I really feel increasingly frustrated with my hospital as they just write a miscarriage as a unfortunate event. So glad that Tommy’s are doing things properly for you. Xx
I think that’s what I’m struggling to get my head around, why it’s never been picked up before. It’s been tested for before and it was negative but I’ve always known that something wasn’t right and that must be some reason why I’ve lost three pregnancies and haven’t conceived naturally after the first loss xx
Hi lovely,
Sorry to hear this but at least you might have an answer. My friend kept having miscarriages and she had this. Once they started her on blood thinners she carried two beautiful girl twins full term. It’s hard now, but this might be the answer you been searching for. Lots of love and hugs xxx
Thank you for giving me some hope xx
So sorry Vicky, not what you wanted the month before FET, but if it is the case and it can be fixed then that’s some good news? Step closer to your rainbow x
I hope so. We’re pushing ahead with fet but they’ve ordered me some extra high dose meds to go along with the pessaries and Lubion. Then I’ll just have to pray for the best xx
Glad you are able to go ahead x
Hi Tugsgirl
I had this result .
It will need to be re tested in 12 weeks time . For them to compare results against one another
It is a blood clotting issue . It isn’t something you have done wrong..
Lots of love xx
I was going to pm you. You are a success story! And you and your babies have given me hope. Having my fet in about 4 weeks time but having clexane as well and aspirin and something beginning with a G (can’t remember what that was) xx
I ended up not able to take aspirin as kept having nosebleeds . But it may not be that way for you lovely. I’m glad that me and my story can offer hope and inspiration for other ladies going through similar . My advice would be to book an appointment with your gp and see what they say and what they advise in regards to blood clotting thinners and what can and can’t be given . Xx
My GP is useless most of the time and obviously I made my clinic aware of these results today and I’ve told them I’ll go with whatever drugs they recommend.. We do have a follow up hospital appointment on the 27th of February and Tommy’s are also seeing me for a follow up in 6-8 weeks so I’m just praying that if I get a bfp we can hold onto this one this time xx
I’m here if you need a chat anytime. If you do need blood thinners I’m sure they can find something which would be suitable for you. Lots of love I’m here if you need me or a chat xx
They would put you on clexane or an equivalent and you will start taking aspirin it keeps the blood thin.
You should be ok.
Tugsgirl• in reply to
That’s the plan. Thank you xx
I can’t offer advice but I would like to wish you lots of luck with your fet and pray that this time it will work! Hopefully you will get all the right advice and medical care for it all to work this time. 💕 xx
Hey lovely, I have prothrombin factor 2 which means my blood has a higher propensity to clot vs the norm. They tested me as they thought that it’s may be effecting Implantation .
I take aspirin daily and Clexane blood thinning injections during IvF
Sorry to hear you’re having such a crappy time, big hugs xx
I was diagnosed with lupus and following ivf I managed to fall pregnant and now have a beautiful almost 8 month old. I had to have daily injections to thin my blood to prevent a miscarriage right from the start. I was very closely monitored by my consultant and on medication to stabilise everything but I did manage to have a baby so don’t give up hope x
Thank you so much for telling me this. I’m going to be on daily blood thinners too. And aspirin. You’ve given me some hope xx
I was on daily aspirin too. All is not lost so please don’t give up hope of having a family. The consultant will talk you through all the possible risks and the best course of treatment and you’ll have lots of extra scans. It was all worth it for us and I praying for the same outcome for you. If you have any questions please don’t hesitate to ask x
I can’t believe that Tommy’s May have already found something that might be the cause of your miscarriages 😔. It must be really tough news for you but it sounds like they are able to treat it and really look after you for your FET x
Hi 👋 it wasn’t Tommy’s unfortunately. I haven’t had my Tommy’s blood results back yet. These were from my bloods done through the miscarriage clinic appointment at my local hospital in November. But Tommy’s will be able to help me in some capacity I hope, if I get a bfp xx
I know this news must be really alarming, however I hope my situation may provide a bit of reassurance to you. Following my MMC, my doctor agreed to put me on low dose aspirin and clexane in the event I got a positive pregnancy test from my FET, which I did. He also put me on low dose steroids which apparently reduce inflammation which again can be a miscarriage cause apparently.
His view was that rather than pay for tests (have only had 1 miscarriage so NHS would not find), that taking these medications would do me no harm.
I’m not out of the 12 week woods mark yet, but what they are proposing you take are the right things as far as I understand it.
You may find when you re-test you are fine. I had my annual medical shortly after my MMC and that resulted in an abnormal smear test with follow up (which was fine) and elevated liver enzyme levels (that when retested were normal too). The body does funny things, and this may just be a spurious result. If not there are things you can take to manage it. But if not, having a problem with an easy solution is a positive for going forward.
However, I know the frustration of having to shift your expectations of when a FET may happen.
Take care, x
Tugsgirl• in reply to
Thank you for the reassurance. We’re pushing ahead with fet as planned otherwise we paid £350 for the scratch last week for nothing and we simply can’t afford to waste that kind of money. Hopefully with the meds I’m going to be prescribed for this fet, I’ll have better luck this time around xx
I have a blood clotting condition so Clexane and aspirin are like 2nd nature to me now.
Wishing you all the best hun xxx
• in reply toTugsgirl
I would do the same in your situation. Take the meds as will help if clotting is an issue and will do you no harm if not.
I have my fingers crossed for you. God, it’s so stressful isn’t it! Good luck, x
Tugsgirl• in reply to
Stressful doesn’t do it justice really does it? Lol. Thank you xx
I didn’t have this test and thankfully never had a MC I can’t imagine the pain. But I did have to take blood thinning medication for the whole of my ivf cycle and pregnancy. I really hope things work out for you and so wish I could just give you the most massive hug and support xx
Did you have blood thinners before?
We tried for 10 years and not a single pregnancy. I was given clexane and I really think that not enough blood flow to my uterus might have been preventing implantation for all that time (the consultant did suggest this as a possible explanation for ten years trying with apparently nothing wrong yet no positive tests) as our first icsi worked.
At least you have some answers and the blood thinners are something you don't need to be taking ages in advance so you can easily have them for the next fet.
This info might make all the difference!!! I'll keep my fingers crossed for you xx
Thank you. I had aspirin on my first round but got a bfn. Back then I think it was standard practice for our clinic to ask patients to take aspirin. But on my first and second fet they said they no longer advocated the use of aspirin without a good reason. Of course by the first fet I didn’t have a reason; I’d had a natural miscarriage many years before and a bfn that was it. Now I’m three miscarriages down with a positive lupus anticoagulant and I will be on aspirin and injectable blood thinners xx
My fertility clinic did not recommend asprin but my OB just put me on asprin. He did not test for anything but justsaid that i should take low dose asprin. I have been on it since went for IVF although i did not tell the ivf clinic because when i asked they seemed to disapprove. SO i followed my OBs advise and i am still taking now I am 13 weeks. When i go back for check-up at 14 i will ask whether I should continue taking the asprin or not.
Sorry I’ve not been on radar for a while but saw your post & wanted to write to let u know I’m thinking of you. Speaking as someone who has been let down massively by GPs missing vital things for over 15yrs, I know what it feels like to be angry when things are missed/why weren’t things tested/why weren’t issues picked up sooner etc but thinking like that only eats away at you and you need to turn this around for your own stress levels & sanity and see that it may just give some fresh hope and a way forward hereon in. I’ve sometimes been relieved when I’ve had tests back which show something’s wrong as it gives me opportunity to address those issues and another thing can then be ticked off the list, as least then u feel you’re progressing in some tiny way. You never know if this is now the golden thing which caused all your heartache and even though you feel you’re going backwards sometimes, you’re one step ahead now going on new medication to treat a potential clotting issue. So try as best you can to go forward on this next transfer and be as strong as you can, I know how detached and zoned out you must feel, but hold on to that little bit of hope that you’re trying something new this time which may just work. I really hope it does for you as enough is enough. All the very best for your transfer, I’ll be thinking of you xx
You’re right in many ways and that’s a nice positive approach of looking at things. Hopefully my embryo will survive the thaw (always so stressful) and then I will pray I get my bfp. If I get that far then hopefully the new drugs will make all the difference xx
Don’t get me wrong, I can feel so angry and negative too but ultimately it doesn’t help so I try and see the bright side through the darker times! It’s all little steps isn’t it - all these stages that people who have babies so easily often miss - the worry of the actual IVF process, the collection, the fertilising, will they get to day 5 worry, the freezing, the thawing, the 2ww, the pregnancy test, the anxious weeks until the first scan then the months of worry thereafter and all that before the baby is even born!! But we know all the massive hard work that goes into making one of these little gems and boy will our battle be worth it if we get our little screaming bundles at the end! All the very best love xx
Thinking of you lovely hope you can get this sorted xxxx
Hi. I also got a very similar letter from my clinic a few weeks ago. I was scared to start with but after speaking to our consultant I felt a lot better. I now look at it as a positive thing. Maybe now that they know the possible reason for our miscarriages they can prevent it from happening again. Im due the second blood test mid Feb. I find all the waiting is the hardest. Try not to panic and good luck with everything. xxx
Got my first lot of meds this morning; Inhixa (Herapin I think). Scary looking things, preloaded injectables. The list of common side effects is a bit alarming. As for the less common side effects, well I’m not even going to think about them! xx
Hey there! I hope you're doing great! Actually, Lulu's anticoagulant is antibodies against substances in the lining of the cells. These substances prevent blood clotting in a test tube. People with antibodies to such phospholipids may have a very high risk of forming blood clots. In such clotting, you shouldn't be pregnant. This can cause serious after effects. You don't have to panic over the whole situation. At first, you just have to get this fixed. Patients with lupus anticoagulants are treated with heparin. I know everyone desires for a baby. But life is a precious thing. You must take care of yourself first. It's not the thing that your body kills babies. Clotting can even cause harm to you or your baby during pregnancy. So you should treat it first. You don't need to be scared. Relax and just hope for the best. Take care of yourself. Best of luck!
Thank you. I’ve now been prescribed Heparin xx
Hi! How are you? Don’t worry about your reports. You will give birth to a healthy baby. You will not get miscarriage this time. Please don’t take pills. Avoid long driving. What do you want baby girl or baby boy? What do you think about the features of your baby? Soon you will get good news about your baby. Consult to a good doctor. Don’t ignore doctor‘s instructions. Take proper diet. Take rest. Take care of yourself.
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