Anyone Starting IVF? Join Me (4)

[bessie84]

The other thread reached 1000 comments, so having to start a new one.

A puff of Babydust to all

x

Sorry for double post - stupid phone l!

Dr Sher also writes a lot of really compelling stuff about how lots of ‘unexplained infertility’ isn’t necessarily unexplained, if immunes issues are identified. My friend who just got her BFP had tried for several years with no hint of a BFP till that point - yet her tubes were patent, she was ovulating regularly, her ovarian reserve was cracking, her hormones were all good, her DH’s sperm was tip top. No explanation for why she hadn’t been able to conceive in 18 months of TTC naturally. Then she had a battery of immune tests, which identified a number of issues, and then on her first IVF cycle with immune treatments, she got pregnant.

This doesn’t mean it’s what’s happening in your case, but it makes a lot of sense that amongst women who on paper ‘should’ have got pregnant whilst TTC naturally, a decent number of those that have the right immune treatment go on to conceive - i.e. they weren’t unexplained, they were just undiagnosed…

We're self funding (via ARC loan). Thank u for encouraging response!

That all sounds very reassuring banana. I have not done a lot of research into immune testing. I guess I was 'lucky' that we were suffering secondary infertility, so my research was not based on immune testing as I knew that department was fine with me to be able to conceive my son. But when a fellow IVF patient told me the story of having conceived on her first IVF cycle despite the embryo being genetically abnormal and m/c at 10 weeks, then starting immune therapy and having subsequent implantation failures despite PGD showing embryo was genetically normal, of course I worry that it was the immune meds putting her natural hormones out of whack.

But you sound like you know a host of others where immune treatment has been beneficial banana which is reassuring... I guess it is just like you say, that there is a difference between being unexplained and un-diagnosed and after 11 IVF attempts, I know how heartbreaking failure is and would hate for waiting to suffer another unnecessary failure, so I thought no harm for her to ask the question if they can do harm if not needed.

From what little research I did on it (I considered getting it tested before my final IVF just to cover all bases) it seems to be just some specialised blood tests which were not expensive here in Australia. I did have the NK cell test from a uterine sample which was not that expensive either. Do you know what it involves and how expensive it actually is in the UK?? Shocking that they charge so much just because they can as women are desperate and need to pay it.

Agreed shellster - it’s all the more complex because it’s such a new and controversial area, with different doctors and clinics who do or don’t ‘believe’ in reproductive immunology.

Level 1 tests can be done in the UK and presumably Australia too - they’re generally accessible on the NHS. I think the basic uterine biopsy nk cell test can also be done on the NHS - certainly it’s pretty straightforward, like you said.

But the level 2 tests are known as the ‘Chicago tests’ because they have to be sent to the Rosalind Franklin lab in Chicago which is why they are so horrendously expensive. I’m not aware of other labs that do them - there may be, just only know of women in various countries whose bloods were sent to Chicago. Which is partly why they’re so expensive - not so sure they’re necessarily preying on desperate women, but don’t think there much wiggle room to make sending bloods to Chicago for sophisticated tests much cheaper.

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

All that said, my consultant said he didn’t always order the level 2 tests, but generally treated empirically, as he doesn’t use the more controversial and unlicensed immune treatments that some of the more well known immune clinics used (e.g. ARGC, Dr Gorgy and Dr Shehata use Humira, IVIG and LIT which are cytotoxic). Also really bloody expensive (no pun intended given that IVIG is a blood product!) - my mate had her second IVIG drip yesterday, which at £1700 a pop, adds up very quickly!!

But I expect it’s very likely that when do have our first failed transfer, if we’re lucky enough to have a good quality embryo and there otherwise decent uterine environment, it may well be that we add steroids and intralipids to the mix (and prob run additional level 1 tests done for the likes of antiphospholipid syndrome to ascertain whether Clexane is appropriate)

Update
Retrieved six eggs the biggest 20 in the smallest 10mm. We are waiting for a phone call now to see how many fertilized, does anybody have any statistics on the rate percentages..? My wife is age 33 and does the male age play a part in fertilization rates?

6 eggs retrieved.

Retrieved six eggs the biggest 20 in the smallest 10mm. We are waiting for a phone call now to see how many fertilized, does anybody have any statistics on the rate percentages..? My wife is age 33 and does the male age play a part in fertilization rates?

Fantastic news small - that’s a great haul! I think mature follicle size is usually somewhere in the region of 16-20mm, although I’ve read that even smaller follies of 14-15mm can contain mature eggs. I was told that on average 75% of mature eggs will fertilise, but in practice it seems to vary massively. A woman on my low AMH cycle buddies thread got 4 eggs and all 4 fertilised! So you just never know

I asked my consultant the very same question about male age, as DH had similar concerns (he’s 45, I’m 33). Dr said paternal age didn’t have nearly as significant an impact on sperm quality as maternal age does on egg quality - and that fertilisation rates are usually primarily determined by egg quality. And your wife def has age on her side. Hoping her eggs and your sperm are having fun getting jiggy in the love lab - keeping everything crossed for good news

xx

You've certainly done some reading on immune tests banana. I was just releasing steam in general about how much IVF costs, knowing how much I forked out for each IVF cycle and after seeing Doctors cars at my clinic worth more than my house! I can understand it costing more if the blood needs to be done at a specialised lab in Chicago. I was very lucky that I never had to worry about immune testing - I conceived DC1 naturally so I was able to conclude that I did not have any issues in that department.

But I can imagine for couples that are trying to conceive for the first time, and especially if they have not been given a diagnosis, and then have a failed embryo transfer of top of that, it would be something they would want to investigate.

I am not sure if these IVIG, LIT and other immune treatments are not common here in Australia, or perhaps I am just not familiar with them because as I said it is not something I've researched. I am familiar with Prednisolone, because blue (an old veteran from this thread) and a fellow patient at my IVF clinic both had success on their first cycle but m/c'd, then started Prednisolone treatment and have had not a hint of success despite both having several day 5 embryos transferred. Could just be co-incidence, but the patient at my IVF clinic had her 10 week m/c tested and was found to be genetically abnormal, then added Prednisolone to the mix and did PGD on future embryos so only transferred genetically viable ones, but not a hint of a BFP. So it still makes me wonder if the Prednisolone could do actual harm if not needed?

You mention 'it's very likely that when we do have our first failed transfer...' - where are you at in your IVF cycle - you'll have to forgive me, I've not been regular on here. I certainly hope that you get a pleasant surprise. Is immune testing something that you are getting done, or have you been given an alternate diagnosis?

Hi
Before your transfer, can you urinate at least once?

Oh god, I hear you all the way on the cost of IVF shellster, it’s crippling. I wouldn’t be eligible for NHS funding because of my very poor ovarian reserves, so we’re entirely self funding. My meds bill alone for the last cycle was £2k!

I do hope your pregnancy is going well? It’s so lovely of you to check in here from time to time, as the thread mama hen How far along are you now?

IVIG, LIT, and Humira are very very controversial, and only a few clinics in the UK offer them, so they’re not very common over here either. They’re only really used by a small handful of clinics who specialise in immune treatment -they’re unlicensed treatments, and my consultant was very very anti their use in fertility treatment, as he said they were cytotoxic and create an unacceptable health risk for no proven benefit.

I haven’t had any of the immunes tests, as my consultant said in his opinion, the Chicago tests weren’t especially reliable in isolation - in his experience they didn’t necessarily accurately reflect the uterine environment, so didn’t recommend running the battery of tests up front (as clinics like ARGC do). He said he ordered them in very selected cases where they warranted further investigation. In my case, he said he didn’t recommend any additional interventions for this first cycle (well, second, but it’ll be our first transfer given the first was banking only) unless they were otherwise indicated - e.g. if I had an existing autoimmune condition, or a family history. He said he’d treat empirically after a failed cycle, if a good quality embryo was transferred that on paper ‘should’ have taken - so next time I would be very keen to push for the scratch, and potentially intralipids, steroids, aspirin etc. We’ll just have to see.

My cycle has been pushed back till after Xmas due to being insufficiently down-regulated at my scan last week - so I’m on the pill to quiet my ovaries, and will hopefully get the green light to start stimming in the new year. We’re trying long protocol in order to try and better manage my lining, and really hoping that I respond to stims after down regging. The hope is to batch together whatever we get from this cycle with the 6 eggs from last time to get more embryos to work with.

I can’t really let myself believe that with my low AMH and high FSH, I could get a BFP on my first transfer. Hence planning ahead to think about next steps after this cycle fails. Would love a pleasant surprise - guess it’s expect the worst, and hope for the best!

Hi Small how’s it going? Sounds like you’re prepping for transfer which is fab news! I was told a medium full bladder was required - I’ve not yet had one, so am sure others can much better advise. Good luck!!

6 eggs doesn't sound like a bad crop for a low AMH / high FSH diagnosis. The most mature eggs I ever got one cycle was 5. Is there a medical reason why you chose to freeze your eggs and do another egg collection before doing a transfer? I found that a one month IVF cycle was tortuously long enough. I can't imagine how much time must be dragging for you given that you are waiting months for an outcome!

I know exactly what you mean banana about not wanting to get your hopes up. Just means you have further to come crashing down if it fails. Although, I managed to be just as devastated after each failure anyway! But like you, I always had a plan B up my sleeve so that I had something to move forward with when the current cycle didn't work.

Oops, forgot to answer your question banana. Yes my pregnancy is going well. For the 7 week and 12 week scan, I was 100% expecting something to be wrong. Just didn't seem possible for me to be pregnant with a healthy baby after so much failure. I am now 25 weeks and feeling kicks so now it seems real. Very sweet of you to be asking amidst your own IVF saga.

By the way, I didn't realise one of the NHS funding criteria is based on AMH levels. I would think that age would be a more appropriate criteria and that a young woman with a low AMH would be more likely to produce genetically normal eggs and have higher success than an older woman with a higher AMH. Or perhaps that is just what I convinced myself of as I insanely tried again and again!

Wow, 25 weeks, amazing news, so excited for you! Absolutely thrilled for you shellster you are a true TTC soldier and you deserve your precious precious baby so very much

Unfortunately we didn’t choose to freeze the eggs, it was an enforced decision :( Firstly, my lining had been just about over the minimum and was looking OK (not great, but OK) - however it had regressed quite significantly between my last scan on the Friday and EC on the Monday - so was far too thin to be able to support implantation, so we had to freeze-all. Secondly, my poor DH was unwell on the day and we had issues with a fresh sample, so we had to freeze the eggs unfertilised. Hence why we have several hundred million of his finest swimmers in the freezer as an insurance policy for this time!

I was keen to go straight into a second stims cycle, as it seemed bonkers to go through the time and expense of a medicated frozen cycle for just 6 eggs - when it would take the same amount of time to do a fresh cycle with another EC, and hopefully get more embryos to work with.

Assuming we’d need to do another stims cycle anyway (assuming the first cycle would have failed), doing a FET and then having to do a second fresh cycle would have been a lot more costly and would involve a lot more waiting. So seemed to be more efficient and more economical to skip the FET altogether, and hopefully have a better chance of a successful transfer. Would be incredible to think we might even have enough to be allowed to go to blast. (hey, a girl can dream!!)

And yes, the waiting has been absolute torture!

I’ve been going absolutely hatstand. I started stimming for cycle #1 at the end of Sept and my transfer should have been early October.

My transfer should have been this week if I hadn’t been insufficiently down regulated to start stimming (and because of Xmas closures it had to be put back till the new year)

So now, I’m desperately hoping for a transfer in Jan. Although that’s massively dependent on whether my lining plays ball - just hoping and praying that I respond to the oestrogen and it thickens up enough for transfer to go ahead.

Ugh!

And yes, sadly most NHS trusts have ovarian reserve as part of their funding criteria

In the first instance, I wouldn’t be eligible as we haven’t yet been trying for the requisite 2 years. Once we found out I was essentially in peri menopause at the age of 33, we decided to rush straight to IVF as in two years time I could be in full premature ovarian failure

And in any case, as we subsequently found out, I wouldn’t be eligible for funding even if I had been TTC for 2 years, due to my low reserves.

To be eligible for funding the patient must at least one of:
• A total antral follicle count (AFC) of greater than 4
• An Anti-Müllerian hormone (AMH) score of greater than to 5.4
pmol/l
• A follicle-stimulating hormone (FSH) score of less than 8.9 IU/l

I might just squeak past now, as my AFC was 5 before my last cycle (although it’s gone up to over 10), but in two years time I think the chances of me passing any of these tests is likely to be zilch

I’m on a thread on FF for women with low AMH / high FSH - in the last month alone, 3 women who were written off by the NHS and told they had less than 1% chance, have ALL got their BFPs with their own eggs.

What you have said is exactly what my consultant told me. He said that quality was more important than quantity, and that as age was the biggest determinant of quality, and I had age on my side, that even if we only got a few eggs, I still had a very reasonable chance - for exactly the reasons you describe.

Sadly the NHS doesn’t take age into account!

Banana- I'm sorry to interrupt this thread, but felt that I had to because I think you are in with a better chance than you think. I was diagnosed with low ovarian reserve 2 years ago when I was 34. My FSH was 12 and my amh was 2.8. I was really worried about whether I would ever have a biological child. Anyway, I was told to do ivf immediately, which we did. I responded really badly to the drugs and only produced 2 eggs. One fertilised- one bfp and 9 months later- one baby boy. Quality is by far the most important thing.
Cut to this year, and I wanted to try again naturally once I had stopped Breast feeding. I had no idea if this was possible or not, as the clinic told me that it was unlikley. However, after one month of trying I got a bfp and I'm now 10 weeks pregnant with twins.

The overall moral of the story is that egg quality and age are the big things! Even if you have fewer eggs, they are likely to be good as you are young! Can you also ttc naturally?

Ps I hope you don't mind my sharing my story and I hope it has a positive effect - stories like this really helped me and I lurk on the infertility thread a lot because I identify with people"s struggle.

Hi Chatty that’s an amazing story! Congrats on your DD and on your pregnancy - wow, two for one special! Just incredible - hope your pregnancy is going well?

Really appreciate you sharing your experience, I love hearing stories like yours, it really does give me such hope. The adage of it only takes one really couldn’t be more true in your case!

I guess I just can’t believe that I could be one of those lucky women who get pregnant with low AMH. I did respond well to stims - we got 7 eggs, of which 6 were mature - and although that would be crap for anyone else my age, for a low AMH-er I was completely over the moon!

Unfortunately so far TTC naturally has been a pretty futile exercise - ironically not (just) because of the eggs. I’m ovulating, my tubes are patent and DH has a ridiculously high sperm count. But my lining hasn’t got above 5mm in any natural cycle - so there’s no way anything could have implanted.

I plan to ask the consultant if there’s anything we can do to support my lining in a natural cycle, so we can at least have an outside chance of a natural BFP - I think the issue is that I just don’t produce enough oestrogen naturally. My IVF cycle was freeze all due to lining issues, so this time we’re doing long protocol so we can give me supplementary oestrogen to support the lining.

Unfortunately we can’t do that in a natural cycle without it stopping ovulation, so not sure if there are any workarounds. Feels like every egg is precious while stocks are running low - so during those months when we have to take a break between stims cycles, if we don’t stand a chance TTC naturally, I’m minded to explore the possibility of a couple of natural IVF cycles at somewhere like Create just to get the eggs in the bank, before we’re allowed to go again for another stims cycle.

But that’s a way off just now - got to see if I can the go ahead to start stimming in Jan, and the big question of whether my lining will respond to progynova and if I’ll be able to make it to transfer at all!

I see- so it sounds like the lining issue is perhaps causing you the main problem rather than the low egg reserve? Surely there is sonething they can do to help your lining in a natural cycle? Have u done any research on this- that's what I would do I think. Also it sounds like you respond pretty good to stimms which is really positive for someone with low amh. Fingers crossed you can go through with a cycle as it sounds to me like if you can fix the lining problem, your eggs are likely to be very good so you have a very good chance! When I did my ivf cycle, there were lots of things I did such as acupuncture to help increase my chances. Not sure If they helped, but I thought it couldn't hurt. If you want to know any more about these just let me know.

Thanks chatty it’s massively appreciated

Yep, the lining is the main issue with TTC naturally - we rushed straight into IVF when we got my bloods, because my fertility had plummeted so drastically in such a short space of time, we felt we didn’t have time to waste. In 2010, at the age of 28, I was diagnosed with PCOS - FSH 3, AMH 28 and an AFC of 42. I went back on the pill to give me periods (as I didn’t have any back then, because I didn’t ovulate), and it was only when I came off the pill in June of this year - expecting to need to go straight onto Clomid because I’d never ovulated before - that we discovered I’d somehow unpolycystic-ed myself and now had diminished reserves: FSH 17.6, AMH 1.5 and AFC of 5. I was absolutely devastated, to say the least

Given my fertility had plummeted 93% in the space of 5 years, we didn’t really feel we had any time to waste.

My consultant (who is the head of reproductive medicine @ Barts so knows his stuff!) said of me “I’m stumped, and I’m not usually stumped’, as my response to stims doesn’t match up with an AMH of 1.5 - which is at least something!

We expected the problem to be that I wouldn’t respond to stims….except I apparently responded so well that I wouldn’t respond to down regulation, and my ovaries wouldn’t go to sleep (I ovulated whilst on buserelin!)

I’ve done loads of reading about thin lining, so I’m armed with a list of questions for him! Tamoxifen, neupogen washes, vaginal viagra, late-follicular phase progynova to boost the lining without blocking ovulation….you name it, I’ve been scouring the internet to ask him about it :) The priority is the upcoming cycle, and at least the lining issue should be more easily controlled with progynova (and patches if necessary)

In terms of acupuncture, I’ve been seeing a fertility acupuncturist for several months - she’s helped 100s of women through their IVF treatment, has a board full of baby pictures, and apparently I’m the first woman she’s ever treated whose lining got WORSE after a treatment of electro acupuncture (!!!)

She’s been going through all the charts of her patients with thin endometrial lining, and so I’m going back in the vain hope that it might help - and worst case it’s just draining my bank balance. Hell, I’m spending £300 a month on supplements for egg quality, so what’s another couple of hundred on acupuncture treatments!!

Okay, got it banana. Yes in your circumstances then, it does seem more logical to do another cycle anyway, then you may as well give yourself the best odds by having more eggs and more chance by doing a fresh cycle followed by a transfer rather than a frozen transfer with the eggs you have. So you're continuing to down reg now and until the clinic opens again in January! What a wait. I am dreaming on your behalf and hoping that with all these hiccups, at least it means more eggs and perhaps the chance of not only a baby, but also a few frozen blasts as a sibling if that is what you would like in the future!

Far out chatty. You might recall we spoke for a bit recently when you started the thread concerned about your low AMH and TTC number 2 and then a few weeks later you announced you were pregnant. I am now gobsmacked to read that not only are you pregnant, but it's twins!!!!!!!!!!!!!!!!!!!!!!!! I do remember reading that our fertility is highest one year after birth and we should TTC again soon after stopping b/fing if we've had trouble conceiving number one. I guess that certainly proves true in your case!!

Banana- it sounds like you're well prepared for your next cycle! Fingers crossed for you. It does sound like you'll have a decent number of eggs so I imagine you have a good chance of going to blast and getting the result you want.
Shell- yes I know-it's a bit mental really. I'm still in shock! The morning sickness is really telling me that there are two though- it's horrible this time. It feels a bit ironic really to be honest.

Thanks chatty so excited for you - what a wonderful surprise for you! Hope the morning sickness abates soon and you’re starting to feel a little better in time for Christmas

I’ve always seen this first cycle as a diagnostic exercise, so I’m just keen to get it over and done with tbh, so we have a better idea of where we stand. My last EC was 5th Oct so was hoping to get the BFN out the way before my birthday at the end of October. Then EC #2 was supposed to be this week, so was hoping to get the BFN out the way before the end of the year, ready to come back in 2016 with a clean slate ready to start afresh. However as we all know, things don’t go according to plan, so just desperately hoping we might be able to get to transfer at all!

Shellster so thrilled for you - do you know what ‘flavour’ you’re having? I bet your son must be so excited about having a baby brother or sister

Gosh, getting something for the freezer would be beyond my wildest dreams! Couldn’t even begin to entertain the idea that lightning could strike twice. Being able to become parents at all seems like asking for so much, think we’d basically resigned ourselves to the idea that having more than one child would be an impossible dream. Still, you have to have dreams, right?!

I guess it makes sense Chatty that twins equals double the hormones and double the morning sickness. Did it ease at 12 weeks first time around? It did for me both times. Hopefully you will find that this time too.

Very sweet of you to be wishing us well banana when we are both pregnant with our second and you are just dreaming of creating one. I feel a bit guilty being on here sometimes as I recall how the myriad of other ladies IVF successes on here just made me feel more so like it wasn't going to happen for me. But I still feel such a passion for the IVF world and those going through it.

I can totally understand you being pessimistic - wanting to "get the BFN out the way" and not expecting anything for the freezer. I guess you can only be surprised with any better outcome then. This waiting is the hardest time as you have no idea how many eggs, how many will fertilise, how many will grow, etc. So all you can do is wait and wonder. I hope you have lots planned and Jan comes around quick for you. Any idea when you will be starting again?