ERA/Alice/Emma infertility thread graduates/pregnancies

[seven201]

If you are a regular on the infertility board you may have seen the ERA/Alice/Emma threads for those going through those tests after lots of unsuccessful IVF or recurrent losses. This thread is for the ladies from there who are now pregnant. We can share our worries and joys.

I am useless at remembering who is pregnant from which thread so please do add yourself or tag others. @Janefx40 and @Faithhopelove83.

Also, if anyone who has fully graduated/had their baby, then please feel free to join if you wish. I don't want to tag individuals as I don't want people to feel obliged.

If you've also just had lots of failed ivf and/or recurrent miscarriages you are of course welcome too!

A little bit about me. I have a naturally conceived nearly 7 year old dc. Have been trying for dc2 for 5 1/4 years. One natural early loss, 5 failed ivf, 3 surgeries (main one being an adhesion removed), 2 natural pregnancies and early losses, 1 ivf pregnancy that got to heartbeat stage. This pregnancy is a letrazole round and I'm 9+6 (although measuring 9+0 but that's been consistent) so due early November. I've been spotting brown for the past 3 days but my scan was this afternoon, so reassuring (although still worried). I'm under the CRP clinic in epsom due to the miscarriages.

Good luck to us all!

@2021ivfagain do you want to talk to us about your worry about the scan here, as the people on the other thread are mostly not pregnant. Don't worry about the variable symptoms because honestly things come and go, I'd be squeezing my breasts thinking why aren't they sore on some days.

@Gardenlady543 I looked back at notes I had made with my first pregnancy. At 6w 2d, I had subchorionic haemorrhage but I was feeling sick daily. I think I might have had the odd day when things lessened.

This pregnancy symptoms are much more subtle. I’m 6w 4d today so it’s worrying. Plus I was 40 when I did egg retrieval and 2 good quality blastocysts were transferred. Yesterday I had bad nausea for most of the day and then late afternoon it went and then came back in the evening. Then I woke up at 3am to use the toilet which rarely happens. Then this morning I usually feel nauseous in the morning but only felt slightly nauseous when I flossed and cleaned my teeth. I felt slightly sick when I opened the fridge but yesterday I had to put a jumper over my head with string smells. Breast pain comes and goes. I’m dreading it because my mother in law is coming with us to look after my son and if anything is wrong it will be a very difficult journey home. I’m just dreading it. If I was feeling worse today, I’d be happy. I suppose every pregnancy is different. This is only my second time being pregnant. We could never get pregnant naturally.

@2021ivfagain like I said it's variable day to day and I've heard lots of people say different pregnancies are variable. I was so worried before the first scan, this is normal. I hope it will go well for you though, it was such a relief when everything was fine when I had mine.

@2021ivfagain i think it’s your scan today, best of luck with it - keep us posted!

@Spin101 do you want to come and chat to us on here?

@2021ivfagain good luck :)

Thank you @Gardenlady543 for adding me here.

Hi ladies, hope you’re all doing well, enjoying time with your babies and/or having a smooth pregnancy.

A quick summary of where I am in my journey. I had my first every BFP recently and my scan yesterday at 6+2. Everything looked ok. I was advised to stop Progynova, estrogen patches and Cyclogest at 8 weeks gestation. This seems too soon to me. I had a really thin lining (4.2mm prior to starting progesterone) so want to ensure I don’t jeopardise anything. I’m keen to hear what guidance you were given. Thank you!

@Spin101 I was on a modified natural so I'm not sure about the estradiol but I stopped pio at 12 weeks and cyclogest at 14 weeks then tested and my level was at the low end so I'll stay on 1 cyclogest for most of the pregnancy. In USA they monitor both estradiol and progesterone and keep people on them where needed. You clinic probably won't treat you after 12 weeks, so you see any one else who could monitor you. I feel a lot more comfortable knowing I have Dr gorgy and can book consultations when needed vs a patchy nhs service. By the way you need to register the pregnancy have you done that yet?

@Gardenlady543 thank you. I’ve already been discharged from the clinic so not sure if I can ask my GP to do bloods to check levels. Otherwise might need to find a private consultant nearby.

I also registered for our hospital of choice. Is that what you mean by registering or is there something else I need to do?

@Spin101 in my area I needed to call the local midwife team and they took my details. So I assume you have done your areas version of this. You can test estradiol and progesterone with medichecks. I think someone like Dr Gorgy will be needed to write prescriptions, I managed to get Inhixa from my gp

@Gardenlady543 Ah yes, I registered with the hospital and got sent a date to see the midwife today which was a lot quicker than I expected. I might need to pay the £30 extra for the tests as I struggle so much with finger pricks. I had my TSH tested via GP yesterday too for raynauds so will wait for those results and arrange to see Dr Gorgy virtually. How much does he charge for a consultation?

How have you been feeling generally?

@2021ivfagain how did you get on today?

@Spin101 I think Dr Gorgy is about £260 for a first consultation and £200 for reviews. He saw me with the positive pregnancy test, then after bloods at around 10 weeks and I'll see him after more bloods at about 20 weeks but Sharon who runs the place said I could have requested a plan for the whole pregnancy at 10 weeks. And I guess you are more interested in hormone monitoring than the immune stuff I'm doing as the blood tests for immune stuff are expensive. What did you have for raynauds? It's a clinical diagnosis so you shouldn't need tests for that.

@2021ivfagain have you had the scan yet, any news?

@Gardenlady543 would you recommend Dr Gorgy even if it’s not for immune stuff? The bloods I had were antibody screen, FBC, liver function, urea & electrolytes, ESR, blood glucose, TSH and FT4 to rule out secondary causes of raynauds

@Gardenlady543 Sorry for the delay. I couldn’t use my phone very well when travelling to London. My nausea has increased a lot and it’s now all day long. My scan went well. I asked for progesterone to be checked: it keeps lowering. Transfer day it was 181, 2 weeks after it was 158 and then yesterday it was 132.

@2021ivfagain glad you’re scan went well! Sorry to hear you’re feeling nauseous all day now. Did they recommend you have another scan soon? What did they recommend re: progesterone??

Does anyone have a reliable source for what progesterone levels should be?

@Spin101 I’m pleased I’m feeling sick all day. Even cleaning my teeth is difficult! Optimal progesterone is over 100. Mine is now 132. However, transfer day progesterone was 181, test day at 14dpt it was 158 and yesterday at 6w 5d it was 132. It’s still good but keeps lowering. My next scan is Friday 18th August.

@Spin101 The clinic were not worried about my progesterone but I get worried it is lowering so I have asked to be tested again on 18th. What was your progesterone?

@2021ivfagain lol I’m glad you’re feeling pleased!

NHS tested my progesterone pre transfer but not at my scan. Im worried about my levels now.. it was 45 (I don’t know the unit) before transfer and at 5+3 it was 61.2 nmol/L via medichecks. Does that sound really low or are your readings in a different unit?

@Spin101 you could call them and ask if they could manage from the hormone side of things. Most of us get the 100 level from specialists, Dr Gorgy likes it over 80 but seems to think the higher the better. Mine was at the low end when I came off for second trimester levels. I found this website which talked about when to supplement, naprotechnology.com/progesterone/ depending on what zone someone is in at their number of weeks.

@2021ivfagain I bet having the good scan was a relief! I think some variability is normal, were all the tests done at the same time? I always did mine first thing in the morning before taking the medication.

So I'm being passed about by the consultants. I originally got told I'd be with a consultant who would understand my IVF journey as she specializes in miscarriages, but she only works in early pregnancy, then it went to triage to decide if I should be under a endocrine specialist and they decided I shouldn't and I should be under a general obstetrician. I then spoke with friends and they recommended a specific consultant who does natural c sections which I liked the sound of and who they tell me is very nice but he didn't have a appointment until October so they said they would keep my first appointment with the general consultant and then I could move to the person I want in October. It all seemed to be sorted then I logged in to my notes this morning and all my appointments are cancelled!! I had to call to find out what's going on and they told me they have now decided I need to be under the endocrine obstetrician. So it sounds like nobody wants me :( they have told me I should do the appointment next week with the endocrine clinic and that after that if they don't need to see me they can move me to the person I want to be under. I also was told some of the email chain, I think you guys already warned me they'd not be keen on the immune treatments.

@Gardenlady543 The blood tests are always taken in the afternoon at roughly the same time as I travel from Plymouth to London and it takes about 6 hours to get there so round trip of about 12 hours! So by that time I already would have had 2 lots of cyclogest and one lubion that day.

I was also told by nurse to start registering with antenatal clinic at my hospital even though I’m 6w 6d today. It seems early as I’m not officially discharged from clinic until just after 10 weeks.

I was also advised not to drink any tea. I was only having one cup a day and then the rest lots of water, but apparently I should just avoid caffeine completely.

@Gardenlady543 thank you. I realise my results are in nmol/l and the website you shared shows it in ng/ml. I’ve converted mine to ng/ml and they seem quite low. I’m going to do a medichecks pregnancy progress test today and will make a plan asap. I certainly don’t think I should be stopping progesterone next week. I don’t think I could do lubion. I had rashes on my tummy after them.

I have a low BMI as it is and am losing weight atm. Most foods I loved pre pregnancy now smell awful 🙈

What snacks have been keeping you going?

@2021ivfagain you need to register as soon as you know you're pregnant as booking is done at 8-10 weeks, you can be under both.

@Spin101 what other types of Progesteone have you tried? PIO isn't great but it's really good at bringing levels up a lot.

@Gardenlady543 sorry I missed your message regarding being passed around. I’m guessing this is on the NHS? It’s frustrating they can’t work out where you should sit and didn’t notify you of the cancellations. Are they able to give you an earlier appointment under the endocrine obstetrician?

@Gardenlady543 only Cyclogest and lubion thus far. Is there more out there?