ERA EMMA ALICE testing thread 9

[Gardenlady543]

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Spin101 @Loz2467 @Mybabydream @Janefx40 @ChickenT2b @kerrym87 @Sar1010 @AM08 @thislittlebird @IVF22 @APSR
@Faithhopelove83 @KLM25 @VenusStarr
@BewilderedBee @Dochas12111 @seven201 @StillWishingHoping

We've maxed out the other one so here's thread 9 😊

@Enfys23 also meant to say, pregnancy announcements are so hard, especially in close proximity, I feel for you I really do. A very close colleague of mine told me she was pregnant shortly after my failed FET and I have to see her at work all the time with her belly getting bigger, talking about scans and seeing her whizzing through it like she’s never had to know all of the things we have to know or what it feels like to go through infertility, posting on social about how much she’s been loving being pregnant and how great she feels, impossible not to draw the parallel to yourself and think it is so unfair that our luck is so wildly different. Oh and she she told me they were ‘not trying, but not even not trying’ apparently and it just happened for them 😞😞😞. Thinking of you a lot with that, I hope your endo biopsy goes well next week.

@thislittlebird I tested progesterone with medichecks, are you doing 2 x cyclogest 400mg and 1 x lubion a day now? That's great you got to get away

@clhiu well it turns out there are three schools of thought, in addition to the "immune stuff doesn't matter there's no evidence base" and "immune stuff is really important and should be pursued" there is also a "immune stuff only matters until 12 weeks". I had bloods at 12 weeks but only lad and Th1/Th2 which were fine so nothing changed and I was told keep doing intralipids every 3 weeks. Then I had bloods at 20 weeks, this time it was lad (which was fine) and nk cells that I hadn't had tested since early 2022. My CD56 were high so I was told to do IvIg, at this point I wanted to do whatever I could, I was told that if there was an issue with the Doppler of the uterine arteries that would be some kind of immune issue, but that was fine. I already weaned off prednisolone at 12 weeks, I came of progesterone at 14 weeks but went back on after weaning off, just 1 cyclogest a day. I'm supposed to stop hydroxychloroquine 200mg twice a day at 31 weeks, inhixa and aspirin I will stay on for most of the time. I'll also stay on low dose naltrexone for most of the time too. They want me to do intralipids until 30 weeks. So I guess aside from the blood thinners most things would end at 30 weeks, I do have a few people I talk to that stopped everything at 12 though.

@thislittlebird Good luck with transfer. It’s so easy to overthink each step. I was on 3 cyclogest a day (400mg x3) plus 2 lubion a day. Could you ask to increase your medication? Also, I took cyclogest rectally which helped absorption.

@Enfys23 Good luck with appointments. I’m gutted the heat as ruined my inhixa. I was controlling temperature but when I was working not all windows were opened in front room. I just didn’t expect it to get that hot. I’m so annoyed. I also am sure I put ice packs in coolboxes for meriofert but can’t be certain so have to order more!

@clhiu how many transfers have you done on the immune protocol? What are they giving you?

Thanks - you just don't want to feel hopeless going through the process, but it is a bit like that. I envy those optimistic, fertile people. Does your work colleague know about your IVF?

@Gardenlady543 yeah, 2 x 400 cyclogest and 1 x lubion. I think I'll get my clinic to do a test at their satellite clinic at London Bridge this week, it's not so far to go. How come you went back on the cyclogest after weaning off?

@2021ivfagain thanks! I take it rectally already, not sure I could handle it as a pessary. I'm thinking i'll get another test and if it's still low I'll ask my consultant about another increase. Did you find your levels were sufficient on those meds? Mine are naturally rather low and I've never received an explanation as to why.

@CailinInUK sorry just saw that about the covid. Hope they recover quick and you all avoid it. I managed to avoid it when DH had it - we slept in separate rooms and aired out the bathroom/ wiped down surfaces etc with antibac after DH used bathroom/ separate hand towels etc. Also we have a HEPA air purifier in the house we had on.

@thislittlebird bless you I know it’s so hard, I really admire you getting out there and going on a little trip. Some shallow paddling won’t have affected anything. I’m going to be a mess for my next transfer (if I manage to get any embryos) which will be our 6th too. Really crossing everything for you. I’m so sorry you’ve had to deal with that news now. It’s so hard to see.

@2021ivfagain agh no! Sorry the heat has ruined your meds. Last thing you need.

@Gardenlady543 what dose of inhixa are you prescribed? Sounds intense. I’m guessing intralipids for that long come at quite a cost?

@clhiu its so hard when there’s so much conflicting info/advice and so little evidence based medicine in infertility.
Easy then to second guess and have your mind playing tricks.
It is so hard seeing those pregnant women who breeze through, no idea what it’s like for us and how hurtful comments like we weren’t even trying can be.

There's so much conflicting info on progesterone too in terms of what level is good. Some clinics seem to aim high but then there’s some evidence really high levels may have adverse effect. Whether I need to look at alternative dose or route is one of my Qs for the appointment in October. Also wondering about a HCG shot post transfer. My luteal phase is becoming shorter. My cycles seem to be more like 23-24 days now. Before all these IVF cycles they were 27ish days.

@thislittlebird Yes although mine did drop slightly. I did insist on 3 cyclogest a day plus 2 lubion a day. On transfer day, my progesterone was 181. When I took my pregnancy test at 4w 5d, progesterone was 158. However, on transfer day I had hcg infusion and I also had neupogen infusion on first day of confirmed ovulation so that boosts progesterone as well. I had extra treatment for low nk cells in endometrium. I would definitely ask for extra cyclogest and lubion is usually taken twice a day 12 hours apart. I took one cyclogest at 9am, another at 3pm and then a final at 9pm and took one lubion at 8:45am and another at 8:45pm. I was also on inhixa once a day.

@thislittlebird I've attached my levels, I weaned off and when I checked after it was right at the lower end of the normal range for the second trimester. I found this website naprotechnology.com/progesterone/ which said I should supplement or I risked a loss. At this point I'd come so far and I wasn't going to let something so minor affect my chances, I called Dr Gorgy's clinic and he said my level was ok but I could take one cyclogest a day if it made me feel better so I've been doing that. In USA the RIs are constantly checking estradiol and progesterone levels in pregnancy but it's just not done in the UK.

@thislittlebird if you are struggling with levels I would recommend one PIO a day instead of the lubion with the 2 x cyclogest, it's the best formulation to bring numbers up.

@Enfys23 I'm in 40mg inhixa a day. The intralipids are £200 each time, I could save on that if I found someone to prescribe as they only cost £20 a time and I could arrange administration, but it's a lot of effort so I've just gone with a place called cherish doing it. IvIg ate £2500 so x10 as expensive.

@thislittlebird I had no transfers on the immune protocol and only planning maybe 1, with the single embryo we have on ice. due to lack of financial resources for more EC/IVF, I’m on Dr Shehata immune protocol alongside superovulation back to trying naturally - conception had cone fairly easily for us in the past, problem is just holding on to them with now 5 losses under my belt. So far I did 2 cycles and despite definitely ovulating both times (2 and 3 lead follicles respectively per cycle plus decent lining) I haven’t fallen pregnant at all so can’t stop my mind from questioning things since in the past we always succeeded with just 1-2 attempts at timed intercourse (no medicines to induce ovulation or monitoring scans, just tracking my cycle, BBT and using OPKs). It’s hard not to wonder if the steroids may be interfering with ovulation, fertlisiation or implantation. For my only ever embryo transfer with CRGH I had pre-transfer intralipids and a tested euploid embryo, but that didn’t stop it from being a chemical still so I’m only marginally convinced this immune stuff will help me holding on to a baby.

My closest colleagues and my manager know about my situation, also HR and the general manager, since I had to have extended sick leave following my two MMC, I had to tell my boss who in turn asked permission to tell the GM and HR. I asked for discretion so I trust the rest of the team and the people I manage do not know. My work also offers 5 days off each given year for fertility treatment so by applying for that I had to disclose to my manager and HR. They’ve been very understanding and supportive so in that respect I count myself lucky to be working for a place with such a predominately female workforce. The backlash of that is of course that I’m constantly bombarded with pregnancy announcements, surrounded by pregnant bellies, people about to go on mat leave or people who’ve just returned, office baby-showers, you name it and it’s soul-destroying when you’re going through this.

@Enfys23 thanks, I did shoot myself in the foot there as when she took time to let me know as tactfully as she could (knowing every bit of what I’d been going through) before I guessed or found out from anybody else (which I genuinely appreciate and could see how concerned she was in telling me) I couldn’t help but asking if they’d been actively trying and that’s the answer I got, I kind if wish she’d just lied about it to be honest just to make me feel marginally less shitty, but you’re absolutely right, people who haven’t been there have absolutely no idea what those comments may feel like for someone like us. Of course now that she is visibly pregnant people are asking questions all the time and she doesn’t hold back, because she’s in my immediate team I find it especially difficult.

@Gardenlady543 ah, I see, more schools of thought on the matter, just what we all need 😂. I’m probably never going to make it that far let’s be honest, but my protocol involves Pred + Cyclogest till wk12, then wane off. Intralipids every 4 weeks from pre-ovulation till week 20, however they haven’t made any mention about retesting NKC or other immunes through treatment so I’ll be sure to ask as if it came to it I wouldn’t want the extra surprise added cost. They only want you to monitor kidney function, liver function, FBC and clotting profile every 3 months, which I’m lucky to have my GP supporting with.

@clhiu are you in the reproductive immunology group on Facebook, there are a lot of people there with recurrent losses that have done well with an immune protocol.

@Gardenlady543 I’m not as I’m a bit wary of people seeing who I am or other seeing I’m in certain groups on FB as I’m keeping this journey relatively private, but I bet it would be really helpful to be

@clhiu why don't you make up a separate profile specifically for the groups on FB? There is a international one and also a UK one.

Oh, that didn't even occur to me to create an alternative profile, very good suggestion @Gardenlady543, I may well do that :)

And have a totally separate question. My current clinic protocol includes 2 x 400mg Cyclogest a day, same as the NHS prescription and my previous clinic, except they say to put them both in at the same time at night before bed, whilst others prescribed them separately 12 hours apart. Any idea if it makes much of a difference? Guessing the idea of putting both in at night before bed time is to do with potentially better absorption laying down all night? But wouldn't the effects run out 12 hour slater or would the half life double if I use to. possibly not a lot of difference? If anybody has any idea on that...

@clhiu cyclogest should be prescribed twice a day 12 hours apart. It mostly should absorb in 20 mins, I use rectally and I try and hold off from going to the bathroom for 2 hours (1 hour if I can't wait). I don't think lying down makes much difference for rectal meds.

why do you think they instructed 2 at night at the same time? I did not ask, but maybe I should have done...just speculating that it's to facilitate absorption

@clhiu I don't know, is this with you creating your own progesterone as well, as that would suggest it's supplementing, I just don't see the point of putting two in at the same time though.

@clhiu I agree with @Gardenlady543. Two 400mg cyclogest simultaneously seems too much. I used 400mg cyclogest rectally 3 times a day plus lubion twice a day. Rectally is better absorption but it can affect bowels.

@Gardenlady543 is that ng/ml? I find it weird how little monitoring is done tbh. I've booked a test for Wednesday at the clinic.

@clhiu hmmm it's difficult, isn't it? It could just be bad luck rather than the drugs. Chemicals with PGT tested embryos is incredibly frustrating, I'm dreading that being our outcome this time.

I'm also in a 90% female team, most of them know because it's gone on so long now. They're mostly older than me, so few pregnancy announcements so far, I'd find lots of them very stressful. People in other teams I'm friends with have lapped me again and again, however.

I'm also on 400 Cyclogest 2 x per day, morning and night. Plus the Lubion.

@thislittlebird my progesterone is in nmol/l which is the standard for Uk. USA use ng/ml. It can easily be converted with an online calculator though.

I struggle as now people are coming back off maternity now, most a year after having babies, more have just gone off and a thoughtless colleague who knows what's been going on banging on about tttc and going on way too much about it.
Anyone have a place they get canesflor from at reasonable price? Just had appt with Dr gorgy who suggested using each day for 6 days then 1 a week thereafter due to reduced lacto bacillus.
Also feeling very unsure after this appt as it was suggested LIT, human growth hormone, double trigger and hydroxycholiquin and clexane which I do get, suggested picsi or imsi despite reduced volume, count and 30% fragmentation. I asked about reasonable outcomes (I know we can't predict massively accurately) but wouldn't say, even when I suggested we'd been thinking about donor and I wasn't sure how many ivf with our material we could a)financially afford and b) whether physically and mentally I can go through many more stims, EC etc with underlying health issues .
Need to also explore more local clinics to at least do some of research on refund packages, who would do scans and bloods etc, do we go to London for EC and transfer etc or more local. Its so overwhelming, anyone got any advice on how to approach and ways to save a little money with drugs, tests etc??

@clhiu I've only ever had cyclogest prescribed 3 times a day 200mg suppository at a time and told to spread out as much as possible

@kerrym87 for that regime of clotrimazole I'd recommend the 100mg pessaries, you can get them in packs from here, www.theindependentpharmacy.co.uk/thrush/canesten-pessary

That's a lot of info to take in how are you feeling about it?

For packages, the refund packages have strict criteria and assess the case file of people before accepting. They also often have limits eg unlimited cycles for 2 years, bare in mind it took me 3 years to do 6 transfers. I went with a 2 cycle non refund package which I bought in 2020, it was £7300 and included a collection cycle, unlimited FET until I ran out of embryos and then another collection and again unlimited FET until I ran out. The contract ends with a live birth and I think you have 5 years to have the cycles, they don't allow embryo banking though.

For medications you want to compare clinics for the private prescription cost, I would then get my medications from Asda pharmacy who sell them at cost price.

Thank you very much for all advice on Cyclogest @Gardenlady543 @2021ivfagain @kerrym87 @thislittlebird I think I’m gonna do one morning and one evening although spacing them apart exactly 12 hours is going to be tricky. And I really struggle rectally as it really irritates my back passage when I put it in so may have to give that a miss.

@kerrym87 it is super-hard to make decisions in good conscience when a clini’s plan essentially involves you throwing a lot more money at it that you didn’t expect, but you feel like you have to because of the ‘what if’ (not to be cynical, but I’m certain private clinics know that full well and that’s how they get more money out of desperate people), but then can’t even give you reasonable outcome projections.

@clhiu I put a bit of fertility friendly lube on the tip of the pessary before inserting, they are very hard so I'd recommend this if you want to try rectally, I read that rectal absorbs better than vaginal and also there is a lot less mess, expect to change underwear throughout the day with the vaginal administration, also it can irritate the cervix and can cause bleeding and you definitely don't want the stress of that. I wasn't too strict on the timing, I'd just put one in within an hour of waking up and do the other before bed at night.

@Gardenlady543 I think it's the probiotic one he wanted me to have due to reduced lactobacillus no candida at all, swab was completely fine, it was uterine biopsy that showed reduced lactobacillus.
It's very overwhelming as we'd have to get into debt for all this and my ME, Pcos, migraines, job on a neonatal unit as sister is just killing me now even when I'm not physically caring for any babies and parents. I just really don't know where to start and when I asked about donor he didn't even answer the question. but Dr chawla said she was relieved to hear that we would be open to it and it is a lot more successful generally but has pros and cons. She also seemed to be a little more understanding of financial constraints informing decisions but Dr gorgy about closer clinics. Really not sure where to start at all now

@kerrym87 ah canesflor not canestan, I blame the covid. I always got mine from Amazon, I do feel it's worth ordering some flora femme and vagibiom if you can afford it as they have more strains in them.

I can't imagine working on a neonatal ward, I had to have my job atop booking in pregnant people with me as it upset me too much, so I can't even imagine how hard this is. I bet you are very specialised working as a sister, are there any opportunities to do research or other project work to take you away from the patients? I think the work situation is so hard, I had to work full time to pay for treatment but working was so hard when the treatment made me so unwell and whatever workplace it's always triggering. The emails in the middle of the day with a picture of a baby saying how someone I don't know had had one, would floor me, I ended up making rules in outlook so emails with certain words in them went directly in the trash.