TTC for 10 months and the rest! 10 plussers welcome! Thread 3 (the one where we all get our bfps!)

[lucieloos]

New thread ready for us chatty ladies! If you have been trying to conceive for over 10 months pop in and join us. We are a friendly bunch!

As for me, well, my body is finally starting to unpregnant itself, the bleeding and clots has finally kicked in. I'm glad, as until yesterday I had felt physically no different between when I was pregnant with a living baby inside me, pregnant with a dead baby inside me, and then not pregnant. I haven't had a proper period since October, after my first IVF cycle so I feel like I am starting to get some physical closure now my body is starting to clear itself out. Need to feel the slate is being wiped clean, so to speak. Sorry

I'll probably start testing with ICs in a week or so to see when the BFN starts to show up so I know the preggo hormones are out my system. I still bloody look pregnant which is pretty upsetting tbh.

I posted the epic cluster fuck of cock ups that happened on Monday on the 'mindnumbing boredom of infertility' thread - needless to say the nurses couldn't have fucked things up more, and my Dr couldn't have been lovelier.

We got the histology report back yesterday - DH is really angry that they sent it to us in all its full unadulterated glory. It’s pretty distressing reading, with phrases like ‘Partially necrotic decidua’ and ‘Multiple fragments of pale brown tissue’ etc. Urgh. The cover letter summarising the findings would have been enough. The important news is that they have indeed found ‘products of conception’ to test, so we will be able to have full karyotyping done (Dr said there was a small chance they might not, guess if it gets mixed up with maternal tissue or something). No evidence of gestational trophoblastic disease so no molar tumours. So at least I don’t have pregnancy related cancer.

Urgh.

Oh yes Sammy I agree with banana. Luckily my clinic is one of the ones that is happy to treat me for immunes without all the expensive testing. So this time around im on aspirin, gestone equivalent, prednisone, clexane and intralipids. Something I was going to say on my other post is that I can't believe how different I feel this transfer compared to the last one. Last time I was on crinone progesterone and I honestly felt like I had the flu or something the whole 2ww it was horrendous. I was tired, achy, my head was so fuzzy I literally couldn't think straight. I could barely get off the sofa. I was like the walking dead. I thought that's how everyone felt but now I realise they don't! I said to DH maybe it was the type of progesterone but I had been taking that for 5 days before transfer and walked all around Prague no problem. It wasn't like a proper flu type illness either where I was properly sick. It was very strange. I wonder if it was some type of immune response and my body had started to fight off the embryos.

Here's a list of the level 1 and 2 immunes tests - a kindly GP may agree to run some or all of the level 1

www.zitawest.com/ivf/immune-testing/

I paid to have them all privately through Blue Horizon

It doesn't mean I don't necessarily have any immunes issues, as it doesn't test for NK cells etc

But it meant we could rule out any major clotting disorders. So I know this mc wasn't something that could easily have been prevented if only I had taken aspirin and some Clexane. The NHS won't run the thrombophilia tests until you've had 3 consecutive losses, and I know women found out they had antiphospholipid syndrome and that all their miscarriages may have been avoidable with a 15p baby aspirin.

NHS also won't run any tissue testing until you've had 3 consecutive losses either. So at least we will get some answers sooner. Sadly you have to pay to get the right treatment as the NHS simply doesn't help soon enough

Similarly because the NHS doesn't believe in immunes I have two friends who went to the eminent RPL clinic at St Marys, were told they didn't have any clotting disorders or thyroid issues so therefore were 'fine', miscarried again, and only now they are having private immunes treatment are they both (so far) successfully staying pregnant.

Lucie - that's interesting. I've had earache and a sniffly nose for pretty much a week....
Interesting about the progesterone sweats too, I'd been wondering what was wrong with me! We too had to open the window last night.

So do you think the best way forward would be to wait to my review meeting and ask if they'll treat me for immune a without the tests (although I'll probably have to pay for these as I'm sure the NHS won't, and actually they may not let me top up my NHS treatment as I know I can't pay to use the embryoscope), then if not go to my gp to ask for the basic tests? What are the basic tests? I might have to go through all the NHS cycles before I'll get any immune help. Or is there anywhere I can go to get the immunes desperately?

Thank you for the advice on the lower dose stims. That's made me feel a little less panicked about it. Yes it will be the same clinic, probably the other consultant though as he primarily does the NHS stuff. Xx

Sammy, yes I would ask them at your review meeting how they would feel about you trying immune treatment without the testing.

The aspirin would be easy enough for you to take yourself anyway. You could make a case for clexane saying that you wanted to increase the blood flow to your womb to see if that helped at all with the lining. The gestone is an injectable form of progesterone which I don't see any harm in asking to try either. The NHS actually gave me a choice of this or pessaries so I jumped at the chance. The only thing you would have to argue for in relation to immunes is prednisone which is a steroid but I can't see why they wouldn't let you try a low dose of it to see if it helps. Also I don't think they would give you intralipids without testing but there are private places that will do it for you without testing if you want to give that a go like I did.

If the NHS clinic won't do the level 1 bloods then I would definitely try your gp and get as many done as they will do just so that's another thing ticked off.

Just take it one step at a time though and go to the review meeting and see what they have to say about all this stuff and then you can make a plan based on that.

Thank you Lucie, that's really helpful.
If I was going to get aspirin myself what dose would I need? Xx

You need the low dose 75mg ones Sammy and start them after transfer for a fresh round or day 1 on frozen.

I know what you mean about early married life Sammy. DH and I bought a house and got married in 2013 the house was purchased very much with children in mind and it is kind of heart breaking walking past the room next to ours which is supposed to be (and one day will be!) the nursery. For now it is extra space for my shoes at least

I've been taking low dose aspirin for a while, you just ask for baby aspirin at the chemist.

Re immune testing, my GP was amazing. I had quite a few of the level 1 blood tests at my surgery. I have Raynauds and my clinic wanted to rule out any clotting issues initially and then I went back after my failed cycles as my clinic had advised the MTHFR, Factor v leidon and factor ll prothrombin. There are so many tests out there and I know how overwhelming it is. I thought my head might explode at one point thinking about it all.

I think you're in a similar position to me in that all tests have come back fine but two good quality blasts haven't taken. My clinic were keen for me to have another frozen transfer and said that we'd just been unlucky but I couldn't accept that, hence implantation/immunes testing. Definitely see what your clinic /GP say and then take it from there.

I don't think I'll be getting started properly until late April/early May because I have to take bcp for 2-3 weeks when my next AF arrives so you won't be far behind me. I am worried about OHSS too but hopefully things will be better for both of us this time.

Banana, that sounds absolutely awful postive that you are starting to get some physical closure and that you will be able to have the karyotyping done.

You're over half way now Lucie, I am shivering at the talk of sleeping with the window open, I'm still using my hot water bottle!

Thanks Lucie. So if I was going to take it between IVF cycles (just because it can't do any harm surely) then I would take it when my temp goes up?

Little bit worried about it though as my consultant said not to take anti inflame after transfer.

Trixie - DH is desperate to sell our 2 bed semi and get something bigger, but I love where we live, love my neighbours and can't bear the thought of having that empty nursery. And yes, you're right. 2 brilliant blasts, 2 failed transfers. I've forgotten, what did your immune tests actually show?

So are MTHFR, Factor v leidon and factor ll prothrombin the only ones I should ask my GP / clinic for? Xx

Sammy there's a full list on that link I posted from Zita West - everything listed under level 1 immunes xx

Banana - apologies, I totally missed your post. Thank you so much for the link. Very helpful.
That's scarily expensive though isn't it? And I'm sure even if I get a kindly GP they won't run all the tests in even one of those groups. Or would they? Gah. So much to think about. Xx

Yes I guess so Sammy although I wouldn't want it to mess up anything for your fresh cycle. I would only take it for IVF transfers if I were you.

I didn't have all the level 2 tests. I paid for the level 1 immunes tests through Blue Horizon. I will check how much I paid. My GP wouldn't do anything fertility related for me as all my treatment was private and I wasn't eligible for any NHS treatment - so they won't do anything fertility related. If you have funding for an NHS cycle a kindly GP may look more favourably....

I paid £675 for the tests

Which is a lot

But as my two IVF cycles have cost me £18,000 so far

And if we do a fresh cycle with PGS that'll be £13,500

Money has now started to lose all sense of meaning

Banana - that's a lot less than on that zita link. I'll look up blue horizon at some point. I know what you mean about losing track of the money though, DH actually said the other day 'shall we add up what we've spent?' I was like 'noooooooooooo'

It's so surreal talking about plans for next time when Af hasn't even arrived yet. Xx

Prices have changed slightly - these are what I had. I just had them done at one of their participating labs (TDL in London for me) and they emailed me the results directly

For me it has made the world of difference for this mc - I know it's not due to a clotting disorder, and isn't something that could have been prevented if only I'd had clexane or aspirin

Immunes profile: Autoantibody Profile I - £175

http://bluehorizonmedicals.co.uk/epages/89289b91-b6f9-4318-864a-f492cbae7827.mobile/enGB/?ObjectPath=/Shops/89289b91-b6f9-4318-864a-f492cbae7827/Products/AUTOO__
_
Includes Thyroid Peroxidase antibodies, Antinuclear antibodies, Mitochondrial antibodies, Gastric Paretal cell antibodies, Smooth muscle antibodies, Reticulin antibodies, LKM..
_
_
Thrombotic Risk Profile - £564

http://bluehorizonmedicals.co.uk/epages/89289b91-b6f9-4318-864a-f492cbae7827.mobile/enn_GB/?ObjectPath=/Shops/89289b91-b6f9-4318-864a-f492cbae7827/Products/PROP&Locale=en_GB

FBC, Coaguoation Profile, Antithrombin 111 , Factor V Leiden gene, Factor 11 Prothrombin gene, MTHFR Gene, Fibrinogen, ACT Protein C Resistance, Lupus Anticoagulant, Protein C, Protein S, Anticardiolipin Abs..

I dread to think how much we have spent...

Sammy my NK blood test came back at 15% when it should be between 5-10%. I haven't had the full assay though. I'll be taking more prednisone this time as well as intralipids.

Alternatively Sammy you could take a mini break to Czech and have all these tests for £150

Seriously Lucie? £150?
We had thought about a mini break anyway.... How would we even begin arranging that?
My head hurts just thinking about all this! Xx

Agate's immunes FAQ on FF is incredibly useful and thorough

The explanation of the different NK cells tests is pretty useful

www.fertilityfriends.co.uk/forum/index.php?topic=242395.msg3904731#msg3904731

Basically there are 3 NK cells tests

1. absolute NK level - this is the one they'll do in the UK, it's pretty cheap, it's just measures the concentration of NK cells in your blood

2. NK cytotoxity assay - this is the Chicago test and the one listed under the level 2 immunes. The FAQ says this is the one the specialist immunes Drs like Dr Gorgy and ARGC prefer because it is "the aggressiveness (killing power) of your NKs that is important rather than how many of them there are in your blood stream. " and the believe " it is more likely to indicate how hostile an environment your uterus is likely to be. "

3. Uterine biopsy - this is the one that I think Prof Quenby and Brosens do, I don't think many of the other immune Drs do this

The FAQ says there is a UK cheaper alternative to the cytotoxicity assay, which I am deffo going to do more reading up on. I know my Dr will treat empirically for immunes so I'm not sure it'll necessarily tell me anything other than potentially shit me up...

...but equally being massively a control freak and wanting to be as belt and braces about my treatment as I can, info is power etc, I may investigate further

The immunes FAQ is super helpful IMO!

Yes Sammy although that's just for the level ones and mthfr. They don't do the nk cell testing there. I guess you would just need to email the coordinator and say you would like to come and have a look at the clinic and could you have level 1 immune testing don't at the same time. Flights are cheap at the moment and you could combine with a trip to Prague or Vienna.

Mini break option sounds like a massive winner!!

I think I need to slow down a little. I'm getting myself all worked up about it. I've not even got to test day yet lol.

Thank you all though, you ladies know so much! Providing we can get the time off I think Czech might be a good plan, £150 seems much more reasonable. Banana - thank you for that link, I'll definitely have a read up. I think I have a lot to learn! Xx

I think that sounds eminently sensible lovely

I am definitely dealing with my mc in what is probably not the most healthy way. I really should almost certainly be taking some mental head space instead of heading down the rabbit hole working out every investigation I want covered and what planning out a whole load of tx - before we've even seen the consultant for a follow up, and before we have the results of the tissue testing

The banana over obsessing approach is almost certainly not really the most helpful way to grieve....

Yes good idea Sammy, have a think about everything and have your follow up and then make a plan from there. At least you have plenty of options.

Banana, hope you are ok. I am the same and would probably find it easier to look into different things to help rather than just take a break as I probably should and process things. You know what's best for you though so just do what you feel helps.