Antithrombin III deficiency and pregnancy

This post is a bit of an educational one and is perhaps more relevant to the infertility warriors out there than the pregnant mammas.  But keep reading pregnant mammas as maybe you’ll learn something hear that one of your friends might find interesting.

As part of my investigations into possible causes of my multiple miscarriages, I was tested for something called Antithrombin III deficiency.  The results showed that I did in fact have a mild deficiency which, put very simply, means I am more prone to thrombosis or blood clots than the average person.

It is good to be aware of if for no other reason that if ever I am having a major surgery I can let my medical practitioners know to take extra precautions to prevent blood clots forming.

What makes it a particularly big deal for me is that it may have been a contributing factor in my infertility and multiple miscarriages.  It is also a big concern when you are pregnant as a blood clot is generally considered a bad thing for both mother and baby.

I am really happy that I went and saw a haematologist separately to my IVF doctor as haematologists are more specialised in this and I found my IVF doctor was and still is sceptical as to the relevance of antithrombin III deficiency.

The treatment that I have been given to offset the risk of thrombosis has been a daily, self-administered injection of a blood thinning product, in my case it is Clexane.  Many IVF doctors do give a low dose of Clexane as part of the embryo transfer process (you usually start a daily dose a couple of days after your transfer), but in my case I needed a higher dose in order to combat my deficiency.

So yes, I have been jabbing myself every single day with a blood thinner since mid-November last year and I will continue up until the birth and then for six weeks afterwards!  Let’s just say that with the IVF injections and now the Clexane, I am not at all squeamish about giving myself injections anymore.  In fact, I am incredibly efficient about it – it probably takes me less than 2 minutes and that includes unwrapping the injection from it’s packaging.  I am a pro at injections these days!

At about six weeks pregnant my haematologist checked my antithrombin III levels again and found that the dosage of Clexane was sufficient at the time, but she did caution me to come back to be tested again once I’d gained some weight with the pregnancy.  Weight gain and increased blood volume can impact the effectiveness of the dosage.  So back I went to be tested a week ago and I was freaked out to learn on Friday that I need to almost double my dosage of Clexane as I am back into the risky zone for thrombosis.  Eeeeek!

Actually I expected to have my dosage increased as I had noticed I stopped bruising so very easily which I did at the start of my pregnancy.  It was a sign that my blood was not so thin anymore.  I don’t know why, but I felt kind of sad for 24 hours after hearing I had to up my dose.  I think I’d gotten to the point where I felt like all my struggles to conceive and failure to be a “real woman” had started to melt away and this was just a reminder that this pregnancy is a miracle of science as much as anything.

But really it’s fine.  It’s important I do everything in my power to keep baby and me healthy.  So what if my dosage is increased? So what if I have a couple of bruises here and there? This will all be forgotten in the sands of time.

Moral of this story though is that if you too have had multiple miscarriages, especially missed miscarriages like I did, then I suggest you go and also have your antithrombin III levels tested.  It’s a very specialised test and so regular blood clinics might not do it.  It’s also expensive, but it’s probably some of the best money I’ve spent during this whole process.

 

 

Losing my mind

Everyone bangs on about the two week wait, but I have to say that was a piece of cake compared with the past few days of wondering if my little one is going to make it this time. I pride myself on being the kind of person that can handle stuff really well.  I’m successful at work, manage multiple projects and deadlines more or less seamlessly, but this waiting game is BRUTAL!

I know pregnancy hormones are meant to bring out the see-saw hormones anyway, but I don’t even know if I can fully blame them for my current mental state of affairs.  I am just so scared.  So scared of having to go through the same loss/grief process as before and on exactly the same timeframe as last year.  If I wasn’t going through IVF again at this period in time I would still be thinking of everything that’s happened (and not happened) in the past 12 months, but now I am doing that and wondering if it’s going to happen again. It’s like the most messed up deja vu situation possible.

For the past 24 hours I have been full-scale panicking that I’m losing all of my pregnancy symptoms. This is mainly based on having lost my heartburn.  Who would thought anyone would actually be excited to have heartburn?!  I then decided my boobs were smaller than the day before and less sore, but I might have imagined that because they’re still feeling pretty darned sore today!  Tonight I started to wonder if I was imagining feeling nauseous but then I got that weird thing in my mouth where the saliva started overproducing so maybe it was for real. I found me a breadstick and felt much better! 🙂

On the medical front, I had my thyroid tested yesterday and it’s still too high, dammit! It came in at 3.9 and it’s meant to be under 2 during pregnancy.  Ugh. I think this was the trigger for my latest panic as underachieve thyroid is a contributing factor to miscarriage.  I don’t need any help in the miscarriage department so my mind started leaping wildly to conclusions, my heart racing and my fingers typing into Google faster than you thought was humanly possible.

Both my super-awesome haematologist and endocrinologist (both women) are really supportive and have told me it’s a little too high a score than we would like at this time, but it is not really bad either so I am feeling a bit better.  Both of them were all very much of the opinion that staying positive is Very Important, so I am doing my best to listen to the advice.

Hubby has also been reassuring saying I am pregnant until someone tells him otherwise (that someone is not me it seems).  I am almost in total denial that I am pregnant and he asked me how far pregnant I have to get before I’ll acknowledge it.  I suggested maybe when I’m in the delivery suite!  Haha!

So now I have to hang on / endure the days between now and Monday.  And stay positive.

Must.

Stay.

Positive!

Cold feet and warm thoughts

One of the outcomes of IVF treatment that has really floored me is how it changes your perception of yourself. The process is so all-encompassing that it’s almost inevitable that you end up focused solely on the goal of making a baby at the expense of most other things. 

What I’ve learned the hard way – and you really do have to look for the rainbows during the storms – is that there is more to me than my (in)fertility. I have more than once lost sight of my own strengths and value I bring to the world. I’m not claiming to be anything special, but we all have something unique that we contribute that is more than just based on our uteruses. 

Most recently I’ve started to feel sexy again. To be able to look at my body and think yep, that’s not bad! I know that in a few weeks I’m going to be all dosed up on evil, bloating progesterone again (ugh) so for this short period I’m enjoying my sexy. 

The bad side of all this relative freedom is that I’m starting to get cold feet about going ahead with the next transfer. Of course I will still do it but I’m more edgy about it than ever before. 

After 2 missed miscarriages within 5 months of each other and the associated grief, there is a part of me that thinks maybe I’m better off not putting myself through all this again. My husband is more positive about our prospects than me (he always is) but he doesn’t have to be poked, prodded and medicated. 

The reality is that I’m enjoying being and feeling normal. Sure I’d be delighted to have a baby but I’m so terrified of it going badly again I’m asking myself am I doing the right thing?! 

I think I am doing the right thing – there are 15 embryos in the freezer with my DNA in them – but the fear is real!!  I don’t want all that I am to be swalllowed up in the whole ocean of fertility with its infinite depths and dangerous dark patches. Part of me thinks why not just stop this nonsense and just enjoy my life even if that’s without children. 

Am I alone with this thought?!

Always trust your instincts

Today I met up with the rheumatologist doctor who helpfully arranged for me to have approximately 750,000 different immune-related and other types of tests a few weeks ago. As I have Raynaud’s Syndrome which can be an immune-related condition, we have been investigating the possibility that I could be having some immune related issues with keeping embryos alive and growing in my uterus.

I really like my rheumatologist doctor, let’s call him Dr J.  I wish he was actually my full time doctor, but he is a specialist so I only get to hang with him for special stuff.  He went through the extensive (and expensive!!!) test results with hubby and me and tried to play it cool that mainly I’m perfectly okay, but that there are a couple of things I should look into.

What were those things you ask?  Well number one is my thyroid.  Yes, that thing that practically every other IVF doctor in the world tests before starting treatment.  Does my doctor test for this?  No.  I am furious.

Turns out that my thyroid TSH reading comes in at 8.01. Ideally you want to be at 1.0-2.0 for conceiving (normal is 0.2-5.0). This means that I have hypothyroidism. A quick google will show you that hyperthyroidism is a cause of miscarriage.  Oh do you think the IVF doctor might have mentioned that to me after TWO CONSECUTIVE MISCARRIAGES?! No.

Thyroid issues are treatable fairly easily it seems and so off I go next week to chat with an endocrinologist.  The list of doctors on my payroll continues to grow!

Then there is a nice thing called Antithrombin III.  It’s something all about clotting. A normal range is 260-447.  Mine came in at 244 so a little bit low but maybe not super scary low.  In any case Antithrombin III deficiency is another cause of miscarriage.

Finally, there are some things called Complement C3 and C4.  These are also related to immune stuff.  Again, my readings come in below normal suggesting I have a deficiency here.  These are also linked to miscarriage.

Anyone noticing a trend here?

So let’s have a recap of things that could be causing my recurrent miscarriages:

  • Hyperthyroidism
  • Antithrombin III deficiency
  • Low complement C3 and C4 proteins
  • PCOS
  • Surgery on a fibroid 3 years ago
  • My age (37)
  • Bad luck (IVF doctor’s diagnosis)

My BFF who is an expert in all things immune-related and pregnancy has been giving me some great advice about what to challenge the doctors on.  If there’s one thing I have learned for all of this it is to of course listen to your doctor/s but don’t take everything they say at face value.  DO YOUR OWN RESEARCH!!

Good and bad things to say to someone going through IVF

As I am now easing into season 2 of IVF, I’m reflecting on some of the most kind and helpful things people have said to me during this process, and then some of the most unhelpful things. More often than not the annoying and hurtful comments that fall into the “unhelpful” category are not said maliciously, but that does not dilute how bone-jarringly brutal they can be at times.

So what’s a helpful thing to say to someone struggling to have a baby and/or someone who has recently suffered a loss such as miscarriage?

That is really terrible/sh1t/awful for you.  I’m so sorry.

This, or some kind of variation of this is really the only helpful thing that can be said.  I have also taken comfort and gratitude from those especially close to me who have reached out and asked is there anything I can do for you?  Most often there is not beyond hugs and listening to me go on, but just to know they want to help or support or do something is just beautiful. After my first miscarriage, my best friend sent me flowers.  She’s over the other side of the world from me and that small gesture meant so much to me.  It really touched me and helped me in that terrible time to feel like I wasn’t completely alone.

That same friend is also really good at not asking questions (mostly).  She senses when to question and when to just leave me be.  She has 2 children now and I saw her recently when I headed home and got to cuddle her new baby.  She didn’t say a thing when I sobbed as I held her daughter.  She just quietly went and got me a box of tissues. That is a good friend.

So over to the other side; what are some of the things that you should not say:

You just need to relax and not stress so much
Oh really?  Is that ALL IT TAKES?!  So if this all it takes then why don’t teenage sex ed lessons cover this all-important conception detail, FFS! While of course it would be ideal to be going through IVF in some kind of constant zen-like peace, anyone who has been through it knows it is very difficult to remain calm at all times.  Just hearing people telling me to relax makes me stress more.  So don’t.

You need to stay positive
This is closely linked to the above “relax” point, but the kind of people who say it to you are particularly self-righteous about always being positive.  I think it’s fair to say I started off season 1 of IVF very positive and confident it would result in a baby.  Some may say naive.  But you know, two miscarriages in 5 months is tough.  I will not apologise for being fragile and hesitant going into this process again, and someone militantly insisting I remain positive at all times does not have a grasp of my situation and is better off staying silent.

A friend of my friend’s cousin drank this magical tea/took vitamins and now she’s pregnant
Sure she did. Please stop wasting my time with your BS.

You just need to stop trying and it will happen. My cousin/friend/neighbour did IVF for years and then stopped and they fell pregnant straight away
Even if this was true – and I really do think this is the IVF version of a wives’ tale – it’s not helpful when you are pouring everything you’ve got emotionally into IVF (not to mention the tens of thousands of dollars/pounds/euros spent).

You’ll have a baby eventually
Maybe we will (I hope so), but I’ve looked at the stats and done my research and maybe we won’t, so don’t be putting more pressure on me by expecting that its a foregone conclusion.

Oh you’re so lucky you get to go out to restaurants and go on holidays abroad (said by parents)
Yes, you are probably right that this is one of the few perks of being childless and no doubt parents (especially of young children) probably miss this part of their pre-children lives. In fact, whenever we have had a loss one of the first things we go and do is book some kind of holiday. But look deeper.  This is usually because we need to re-set ourselves and get away from all the sadness.  By being so glib about what childless means is patronising and offensive.

I know exactly how you feel!
This is so often said by people who have gone through infertility challenges themselves and have crossed into the other (dreamed of) side of pregnancy and parenthood.  This is especially stinging because you would think such people should know better. One thing I have learned above everything else from this blog forum is that everyone’s story and pain is different and unique.  My story is different from your story even if we are both going through IVF.  My circumstance, background, age, experiences in the past are different from yours and thus my feelings are a kaleidoscope of those experiences, as are yours.  We might each have great insight and be able to share helpful anecdotes or experience – this is beautiful and should be encouraged. However, if you have been fortunate enough to graduate from the title of infertile to that of pregnant or a parent then do not come and tell me you know how I feel.  You don’t know how I feel any more than I know how you do.

Have I missed any really good ones?  Feel free to add your own suggestions in the comments.

And then for a bit of light relief, I highly suggest you go and read this excellent and funny piece on IVF and the Dignity Olympics.

Season 2, Episode 1

So we are back for Season 2 of IVF treatment. I clearly remember coming around from my anaesthesia after my egg removal the first time and swearing I would NEVER do this again. Hmmm… and yet here I am again.

During my first season I was very much the naive novice. Somehow I believed it would all just work out and that would be that.  One round and done. Baby in the home and all the suffering worth it.  Hahahahahaha! Oh how I laugh at my own memories.

So while I do still have a frosty in the freezer, after two missed miscarriages and associated D&Cs in a row (not to mention the enormous grief), I kind of feel like that whole batch was cursed, though I’m not sure “cursed” is yet recognised as an official medical term.

Today I am on day 3 of the down-reg drugs (for me it’s Suprefact) and I will confess I am not finding it as easy as last time.  I think there are several reasons for that, but the main one is that I’ve had a pretty mean summer virus for over a week and I think when you’re feeling lousy to start with, jabbing yourself with a bunch of hormones is really never going to end in you feeling better.

During season 1 of Suprefact the main side-effect I experienced was crazy-intense headaches which I could mainly control by drinking a lake full of water each day.  This time round the headache hit with an intensity that made me frown all day. I’ve also been experiencing random sweats which is so unbelievably gross.  I know these are common but I didn’t get them last time so feel a bit annoyed that they seem to have turned up this time.

To say I am not looking forward to the stims round does not even cover how I really, truly feel about it.  In season 1 I was so unbelievably uncomfortable and stretched by my ovaries growing.  And the annoying thing is that it actually gets worse after they take them out!  Having all this knowledge this time is in some ways a good thing, but in others is a horror.  I know exactly what awaits me and how much I don’t like it!

Last night I even had a cry for about an hour after my jab (which do not even hurt so this is completely irrational) about how I just do not want to be doing this again and how awful it will be to go through it without my kitty baby on my feet every night to keep me company.

That’s right, my cat has not been found.  She went missing on 1 July so I don’t have much hope that she’ll come back anytime soon.  Of course I still have 2 others who are gorgeous and I love them, but she was my favourite and my little shadow.  When all of the bad stuff was going down I could always go home to her and bury my sadness in her furry belly.  Anyway, I hope that someone nice has found her and that she’s living the high life on someone else’s sofa now.

As for all of the bazillion blood tests I’ve done recently it seems that I have high prolactin – which could be attributed to my PCOS or could be a brain tumour (side note: don’t you just love how there are such extremes in all of this? – but the other autoimmune tests showed not very much.  I’m going to see my specialist in a couple of weeks about it, but over the phone he told me that if there were no extenuating circumstances then none of these test results would be a cause for concern.

This is great news obviously as it shows there’s nothing wrong with me, but it doesn’t really explain what’s been going on with my two failed pregnancies.  At this point they best answer I seem to get is that it’s all bad luck.

Yes.  I have had some bad luck and bad things happen to me, but can I really blame everything on the randomness of everyday life.  Let’s hope it was just a cursed batch and that Season 2 brings a positive finale.

 

 

 

Cellulite and broken dreams

It’s been five weeks now.  Feels like forever and yesterday all at once.  For a while all everyone wanted to do was to ask me how I am, and I constantly struggled to answer them.  Now they’ve stopped asking, which is a kindness in a way.

This loss has affected me differently from the first one, deeper, driving right to my core and draining me of energy and positivity. It was about 10 days of so after the D&C that I really started to fall apart.  It got so bad that my boss sent me to a psychologist, who diagnosed me with depression and suggested medicating me.

No.  No more medication.

But the psychologist did at least validate my feelings. I wondered if I was being overly dramatic, but no, she listened – not just to the current news, but to my whole story.  We all have complicated stories, but the fact that she actually seemed a bit blown away by mine was nice in a really odd way.

After that I gave myself a good talking to and started to make some positive changes in life. My theory is that if I do things that are meant to make me feel better, maybe eventually it will work.

So I started my yoga practice and returned to some regular running.  I have been eating unbelievably well – dieting to lose the IVF/pregnancy softness that is inevitable – and taking a bunch of super-expensive vitamins that will apparently make my egg quality spectacular.  Plus, I went back to my lady who gives me my cellulite-clearing treatments. Maybe it’s just me, but pregnancy (even if it is not a full pregnancy) gives me cellulite on my thighs. I won’t lie, I like my legs and they usually look pretty spectacular.  My husband has always said my butt and my legs are fantastic (well my boobs are quite small, so every cloud etc) and so when they all started to go bad it put my self-confidence at a maximum low.  The cellulite-busting treatment helps me to get some confidence back, and it ACTUALLY works.  It’s not some BS cream.  It’s heavy duty massage that hurts like hell but does break up the cellulite and clears it out.

I was doing okay for a while there and starting to gain confidence and positivity.  And then I got the karyotype (genetic) tests back. The doctor had always told me the testing was mainly pointless because the missed miscarriage was most likely caused by a genetic defect.  And after having had two of those in a row I figured our embryos were just genetically bad.  A group of rotten apples if you like.

But then the test came back and there was no genetic issue with my baby.  None.  SO WHAT THE HELL IS CAUSING THE MISSED MISCARRIAGES?  I have really no idea, and my doctor was totally useless saying just that the “treatment” will continue.  No extra testing, no hypothesising.  Just try again.  Kiss goodbye to 10k and whatever small piece of normal life you have and try again.

Well stuff that.  I have started doing my own research (hellooooo my old friend Google) and there are so many tests we can do!  All sorts of things for auto-immune issues that could, for example mean that my body is not feeding the placenta (or what would have become the placenta) and thus a perfectly normal embryo could fail.  I also have something called Raynaud’s syndrome which can sometimes be a sign of an underlying autoimmune problem.  My doctor knows this and yet he still doesn’t test for autoimmune. He tests for nothing. Recommends nothing.

So I’m going to go to a haematologist – without mentioning this to my doctor – and I will test myself.  If anything important shows up I will of course mention this to my doctor, but this is what it’s come to.  To say my doctor is not my favourite person is an understatement.  His one-size-fits-all approach must be a great cash cow, but for sure it doesn’t work for everyone.

But do you know what was the worst bit about the karyotype testing? I found out the gender of our baby.  It was a girl.

This broke me.  Completely.

I don’t know why it should matter so much and would I have been more or less sad if I had learned it was a boy? I don’t know. But knowing the baby had a gender was a huge reality-check.  I lost a baby.  Another one.  While people all around me have babies. It hurts more than I thought would be imaginable.

So that’s why I haven’t been writing on here recently.  I really am just focusing on finding a way of getting up every day and carrying on. I can’t even bear to read the other blogs and I’m sorry to all of you kind and wonderful ladies out there who I normally keep up with.

It’s just that every time I tune in here I see someone else’s baby scan and I see the little legs of a baby forming and it breaks my heart.  If my first pregnancy had worked I would be finishing up the last days at work now and giving birth in a few weeks.  If my second pregnancy had worked I would now be parading around the beach with a beautiful baby bump.

But there are no babies for me. Just cellulite and broken dreams. Some part of me is still fighting, still wants to go on or else I would have totally thrown in the towel by now.  My husband is spectacular in all of this – he’s been so patient with all of my sadness and moods and has barely made me see his family at all (thank goodness).  Someone give him a medal!

I look back a year ago when I was just starting all of this.  I was so full of optimism and expectation that this would just work.  It was never really an option that it would fail. Somehow I have to find that optimism once again.  I’m trying.  I really am.