Can of worms

So much has gone on in the last week. I don’t know where to start. Today I’ll try to recap the latest from all the recent investigations.

Test results are back. Here’s what’s been done, or retaken in the last five weeks to investigate the reasons for our multiple losses:

uNK cells via biopsy
Leukocyte Antibody Detection
HLA DQ Alpha Antigens
NK Assay Panel
TH1/TH2 Cytokine Ratio
MTHFR
LFT Liver Function test
AMH
FSH
LH
Prolactin
Thyroid Antibodies
Thyroid function
Anti phospholipid antibodies APA
Karyotyping (still waiting for that one)

Many of these came back normal. Four did not.

1) Endometrial biopsy came back borderline abnormal. uNK cells present, not super present, but enough to possibly cause issues. Treatment so far will begin with progesterone only, no steroids yet which I am thankful for. But steroids might be introduced after BFP, if that ever happens.

2) My anti cardiolipin antibodies in the APA screen came back positive. These produce an autoimmune response that prevents the fusion of cells that help the embryo to attach firmly and grow deeply into the womb lining. I’ve been tested for this before and it was negative so will be tested a third time to confirm it. In the meantime this will be treated with Clexane injections at BFP in addition to the 150mg aspirin for the increased clot strength I already have. This could also explain our RPL.

3) Leukocyte antibody detection panel also came back abnormal. This is when the mother’s body has an inadequate response to the growing embryo and will be unable to produce antibodies that protect the embryo from rejection and stimulate growth of the placenta. We haven’t had a chance to discuss this with our reproductive immunologist yet but we know from previous discussions with him that the treatment is LIT. White blood cells from Hubs are injected into my body to get it to produce blocking antibodies that will protect the embryo.

These three results are manageable. We can work with these. Sadly though they are all dependent on a BFP. But the next one is the one that could prevent us from dealing with the first three at all.

4) AMH. It plummeted from 12.9 to 2.1. In 8 months. For those of you in North America that’s 1.8 to .29. A shocking drop. This is most definitely NOT good. And we don’t know why. I spent much of that time pregnant, how can that drop so quickly? How can that number reflect my egg reserve if no eggs were spent for over four of those months? At this rate they’ll be no egg reserve by the end of this year. I am terrified. After hearing the news a complete meltdown of crying, destroying and dry heaving took place.

Unfortunately my GP who delivered the news doesn’t really understand the role AMH plays in fertility. She quite bluntly said I’m likely no longer a contender for IVF at all, especially since we won’t be able to start it until January (ie the drop is so rapid that next year will be too late). We’ve been at the top of the NHS IVF list for months but we put it off 1) because we were already pregnant and 2) because we were hopeful since I could get pregnant that IVF wouldn’t be necessary.

How could I go from being ‘super fertile’ to having nearly no viable eggs left in such a short time?

I frantically researched AMH when I found out, as I did back in January when a consultant flippantly said donor eggs was our only route (we had two BFPs since that day BTW) and its role in infertility and came up with some really conflicting results, particularly when women are able to conceive naturally. Our consultant at the RPL clinic advised us previously that AMH wasn’t that important if we can conceieve naturally and that drugs from IVF might actually do more damage to than good to someone of my RPL history.

The fertility experts we’ve seen previously, back when getting knocked up wasn’t happening, thought they could work with my AMH as it was in January. But they also sided with the RPL clinic, thinking it probably isn’t suited to someone like me. My GP thinks they will be even less willing to work with my new number now. We’ll find out on the 22nd October when we have our next appointment with them. In the meantime we are considering going to a private IVF clinic so we don’t have to wait. There is still so much I don’t know or understand.

My new Chinese Medicine practitioner (love her) was completely dismissive of the AMH results. She tells me that the hormone, released by the antral follicles, is only as good as the follicles are in any given cycle. Given that I recently miscarried she believes the whole system is still recovering and the hormones are out of whack and if we test again in a few months things will likely improve. Even though western medicine suggests AMH can never improve she has seen it in her clients. She stressed what is important is the number of follicles, more than the hormone reading. I seem to have a decent number of follicles but no one knows whether they’re any good or not.

Right now we are waiting for further appointments with the various four professional groups. Feeling like we are swimming in opinions and information. Not knowing what’s real, what’s important, what to do next. It’s hard deciding who to believe. The RPL clinic? The fertility clinic? The reproductive immunologist? The Traditional Chinese Medicine practitioner? I have no freaking clue who to trust and I have a hard time hearing my gut at the moment. I don’t feel like I have the full picture.

This just feels like a cruel joke. It seems not only does my womb make a habit of losing babies but now the very essence of my ability to produce proper eggs at all is in doubt too. And to top it off, the beating heart of our last loss, the one who seemed to beat the RPL, AMH and age odds, stopped because of an independent fluke abnormality. F U universe, F U.

The New Clinic Part 4 : Uterine Natural Killer cells

Part 1 Super Fertility
Part 2 Super Fertility treatment
Part 3 The Biopsy

In addition to being investigated for having an insufficiently selective womb, last week’s biopsy was taken to determine if NK cells are elevated in my womb lining.

Natural killer cells I’m told are good, despite their name. They appear apparently in the womb at the time of implantation (which is why they do the biopsy a week after ovulation) and determine whether the womb is short on steroids to support a pregnancy. You can read more about what they do here. And there’s also a study I found interesting.

Apparently if the tissue taken from the biopsy shows that there were too many NK cells at the surface of the lining then treatment may be required to reduce the number of cells that might be impeding growth of the embryo.

Treatment in my case would be with steroids. Prednisolone I’m told reduces the amount of oxygen in the womb which subsequently reduces the amount of blood vessels. Apparently excess oxygen and blood vessels are harmful to a developing embryo and the goal is to create an oxygen free environment, more like a normal womb.

I won’t even go into the huge list of side effects from the steroid treatment: moon face, weight gain, migraines. Won’t worry about this until we get results. All are obviously worth it if we get to bring a little one home one day.

I’m meant to have blood tests for NK cells as well under investigation by a private doctor. Not the uterine kind, but the kind circulating in the blood. There seems to be some disagreement between immunological camps as to whether general blood NK cells are harmful to pregnancy. That’s a whole other issue, whether we decide to pursue that form of testing. For now we will focus on the womb lining kind.

Who knows if this will be another battle to overcome. We’ll find out in four weeks.

Have any of you been tested for uNK cells and if so what kind of results did you get?

The New Clinic Part 3 : B is for Biopsy

Part 1 Super Fertility
Part 2 Super Fertility treatment

A continuation of my appointment on Friday.

Right, so the biopsy. The very thought of it makes my eyes roll back into my head.

The biopsy is done 7-10 days after ovulation so the lining is thicker and so they can see how the womb is responding to what should be a critical implantation phase.

The first point of the biopsy was to test NK cells in the womb, something I will go into in another post.

The second reason was because it has been proven that the very act of taking the biopsy at that critical time after ovulation can be treatment in itself. It mimics the signal of implantation to induce healing and recruit stem cells to support the embryo in a following cycle. So in short, this can actually help to keep an embryo implanted as many of you ladies in North America know as endometrial scratching / biopsies are often performed prior to an IVF cycle to increase chances of success.

I was alone for the procedure, something I don’t recommend. I knew the Hubs couldn’t make it that day and we decided it was better to get it done at the right point in my cycle that they needed to rather than wait another cycle. So I went alone.

They explained the procedure starts like a smear test. A speculum is used, the cervix is cleaned, then a catheter is inserted and some cells get sucked off the lining. Thankfully it’s not a cutting type of biopsy.

But first a scan to check how thick my lining is. They won’t perform the biopsy on anything under 7mm. I told them a scan I had two days before ovulation determined my lining was too thin at 6mm but this doctor told me not to worry, that for sure it would be over 8mm by now. So wand goes in, he scoots it around. Lining? 6mm. Thin. Too thin. Oh wait. He finds one spot that measures 6.9mm. That spot is up and over and the furthest point away deep in my uterus. It’s still too thin for his standards but he says he’ll do it considering the look of desperation on my face and that I’ve travelled over 3 hours for it. But he tells me to prepare myself because this is going to hurt.

We always get the difficult uterus on a Friday afternoon, he says. Prepare yourself.

Meanwhile he’s making small talk asking me what I do for a living as he preps the tools for the biopsy. I can barely hear the questions over my pulse in my eardrums. I’m terrified I tell him. I’ve had a horrendous HSG procedure that almost knocked me unconscious with pain. He recognises how that could be an awful experience but carries on with fixing the speculum. He then explains again showing me a what looks like a 20″ catheter how far he’s got to go to get that thing in the right place. This is where most women get their sample taken (points to area just inside opening of womb). This is where we have to go to get yours (points to uterine no mans land). This might take a while and you are going to feel it.

Thankfully I had done my research unlike prior to my HSG. I was well aware this could hurt. So I took 800mg ibuprofen about 45 mins beforehand in addition to half a Diazepam. Thought I was going in prepared. Both did nothing.

First attempt at getting the catheter in doesn’t work. My uterus is too tilted, too awkward. Can I move down a little. Can I try a tilting my pelvis. Poked and prodded but still no luck.

Ok time for the bigger speculum. We’ll be right back. Nothing like being naked from the waist down, inspection lamp pointed brightly at your crotch, your feet in stirrups when everyone evacuates the room to fetch larger tools.

Bigger speculum is right! How they got that thing in there I will never know. But that was the easy part. The next attempt at the catheter. It’s going in. And in. And in. And this I can feel. It gets progressively worse as it goes in. Eventually it reaches it’s final destination and what I can only describe as pulling begins. This must be the suctioning. See on the screen this is the catheter and this is where we’re taking the sample. No I do not want to see just get the thing done! He tells me he counts down from 10 and at each number he pulls the tissue out with a yank.

After much fussing around he’s got what he needs. Or does he. Not convinced he asks if I mind if he checks the sample before removing the speculum. There’s a chance we might have to do this again. Thankfully though upon inspection he thinks we should have enough.

I’m warned that I may spot for the rest of the day and my period will likely come a few days early and I’m sent on my way.

Consensus : Painful? Yes. Endurable? Yes. As bad as HSG? Definitely not.

Tests tests more tests

Today was our first appointment with a private immunological fertility consultant in hopes they can help with our recurrent pregnancy loss.

It’s the next step in our investigations. All the other standard RMC investigations have come up clean, bar one: the thromboelastogram. But there are the few that remain.

I was strangely reluctant to take this step because 1) it’s one step closer to reaching the end of our investigative journey and that terrifies me because if everything comes back normal then we’ll be left without a plan of action. And 2) because of the potential to spend my life savings on tests and possible treatment plans when it’s possible they aren’t necessary. Can o’ worms so to speak.

One thing’s for sure: trying to keep up with the jargon is exhausting. Cytokine this, antibody that. Here’s what’s in store for us:

Leukocyte Antibody Detection (male / female)
HLA DQ Alpha Antigens (male / female)
NK Assay Panel
TH1 / TH2 Cytokine Ratio
PAI Polymorphism
High Vaginal Swab
Semen Culture & sensitivity
Mycoplasma, urea plasma (menstrual blood)
Karyotyping x 2
Sperm DNA fragmentation
KIR genotype testing
MTHFR

Now comes the test of deciding which of the several possible routes to take. Be armed and get the full picture or forgo the tests and have faith that the thromboelastogram was really and truly the cause for our first four losses and by treating it things will all work out? But what’s our problem? We wanted answers and that’s what we can get.

The RMC doctors’ argument that had our fifth baby not had a chromosomal abnormality then it is quite likely it would have been carried to term is sticking in our minds. It did get further than all the others. Question is whether that’s enough for our peace of mind right now or whether its better to rule out all other options. This knowing comes with a pretty hefty price tag but the benefit of awareness might simply tip the scales.