ERA/EMMA/ALICE Testing thread 4

[Janefx40]

New thread ladies! @Gardenlady543 @MyEasterEggs @seven201 @VenusStarr @Violette22 @Yuliaaa

Well done on getting sorted for those today @Gardenlady543 .

It could just be me and @Janefx40 having random light periods and not humira related. Personally, I'm hoping it was a one off humira thing and won't last.

Oh wow! @Violette22 I somehow missed the positive pregnancy test! Congratulations. You will just have to take each day as it comes I guess. It's such an awful wait. I really hope this one works out for you.

I didn't know he'd done another podcast. I'm not sure if I want to listen as my three miscarriages have all been before 6 weeks.

@Babydustt12

My initial report said "according to our internal data 89% of women with similar endometrial profile reached receptivity with one more day of progesterone administration, so in these cases new endometrial biopsy is not needed"

If they have said to repeat then I'd repeat as I don't think they say this very often.

My endometrium is a complicated story, it was initially 5mm before I did IVF, in IVF it got up to 8mm, one time even 9mm in medicated FETS, it's trilaminar but was always described as not quite right, it looks thin and patchy on transfer day. For the initial ERA it took my specialist 3 attempts, to get a biopsy, as it looked like the endometrium was there but only blood came out. I had a terrible microbiome which was treated and then the lining seemed to improve, it even got up to 8mm in a natural cycle. However I have recently found out I have hypothyroidism, this causes endometrial hyperplasia (a thicker lining). Now my thyroid hormones are in range my lining is back to being 5mm.

Endometrial receptivity is complicated, it's the progesterone that leads to receptivity. However it is likely that other things can cause issues with receptivity, the microbiome and immune issues for instance. This is why I repeated the ERA having treated the microbiome issue, unfortunately the repeat showed an ongoing issue with the microbiome. Since my endometrium has changed drastically since I treated my hypothyrodism I'm keen to repeat the ERA to see if I'm still a slow responder.

As for the ERA not being reliable, most of the studies on the ERA are from the lab that do the test. Some specialists think it's of no use at all.

CD138 is not to do with the ERA EMMA ALICE, it's a different test, it's a marker of endometritis, this is inflammation in the endometrium caused by bacteria. The ALICE test will tell you if you have the bacteria that cause it, since the market is negative that's a good thing. You could still have abnormal bacteria not associated with endometritis but that still aren't good bacteria to have.

@Gardenlady543

thank you for the detailed explanation with everything think I will repeat it then if it’s not something they tell everyone.

regarding your endometrium when you said it was 5mm before IVF is that before you ovulate?
I think I agree if you have been treated for endometritis then you want your era checked again before you get a transfer done.

where you getting you Biopsy done? I got mine done in Spain but if I could get it done in England that would just safe me travelling.

when do you plan to get the repeat ERA done?

@Babydustt12 it was 5mm at 9dpo before I started Ivf but they missed this and I didn't find out until my specialist looked back at the scan results after my 2nd unsuccessful transfer. I had a scan at 9dpo last year and I was at 8.1mm, I recently had a scan on the last day of my cycle and I'm down to 5mm again. It's thought that I developed hypothyroidism fairly early on in my IVF treatment, but we'll never know when.

I got my biopsies done at my IVF clinic, but there is a place called Cherish which I think is nurse led, it's in Birmingham and they have on their website that they do ERA EMMA ALICE, maybe you could try them? For a repeat, the lab usually test the sample for free so you may be able to get some money off.

I'm not repeating anything just yet, I need to have fibroid surgery and then explore immune treatment. I'm a complicated case :(

Hi everyone, hope you're all OK.

@Violette22 these early days of pregnancy are so hard and time seems to stand still ❤️ are you continuing to monitor your hcg?
Dr Shehata doesn't look at DQ Alpha, but he's prescribed me the gcsf injections and I think it was @Gardenlady543 who said that it's a treatment for DQ 🧐

I'm glad you've sorted your partner's sperm analysis @Gardenlady543 how long until you get the results?

@StillTrying10000 how are you feeling, have you had another scan ahead of your FET? I've got everything crossed for you.

I hope your light period was just a random thing @Janefx40 could you get a scan in your next cycle to check? My lining was pretty poor a few weeks ago but my period was really heavy and painful. I hope you're feeling OK.

@seven201 I think I joined you in thread 2, really hoping that we are all on our way to positive things 🙏

I emailed the clinic to ask if we can do superovulation and one of the nurses called me to talk through it all and we're on 😬😶 I've literally just had an email to say they've posted the meds. I feel excited but also petrified. Just need to take it one step at a time. I'll be getting my FET sorted for my June cycle anyway, but hoping we won't need it 🤞

Sending lots of love to everyone xxx

@VenusStarr thats great news. Are you feeling like you have renewed hope now? I find the months when we are doing something so much happier than the down months.
I had my final scan and intralipids today and all looked good so booked in for transfer next Wednesday. We’ve decided to go for one embroyo but keep an open mind to try two more transfers. My DH isn’t ready to give up yet. I just don’t want to waste 2 embroyos on one transfer when I don’t feel optimistic that this cycle will be any different from the rest. In 12 days we’ll if we’ve been successful. x

@StillTrying10000 exciting to be so close (and terrifying too). Keep us posted

@VenusStarr wow so you're on. How do you feel? It sounds like a positive step.

@Violette22 that Hcg is a great number but I know that it's impossible to feel reassured after losses. Will you have it checked again.

@Babydustt12 @Gardenlady543 @seven201 we seem to be turning into the thin lining thread!!! Ugh. Why is there always something else to worry about! I might book in a scan - it's a good idea

Xxx

@Gardenlady543
oh dear sorry to hear about everything you have to go through. Well it’s good you atleast have the option of repeating your ERA.
thank you for recommending the one in Birmingham will look into it.
my consultant said he wouldn’t recommend a repeat ERA provided I don’t have endometritis and that he would just do the transfer at 6.5 days 🤷‍♀️

@Violette22 that does sound really good.
I’ve discover medicheck blood tests as a lot cheaper way of checking if HCG is progressing, it takes two days to get results though medichecks.com/products/pregnancy-progress-blood-test. I also like the Clearblue how many weeks tests to see the weeks ticking on at the beginning.

@Janefx40 how are you getting on? x

@VenusStarr people say it's steroids and neupogen for the hla dq alpha match, I had a search in the fb group you recommended and that's what people seem to get put on. I guess there isn't much in the immune treatment toolkit so the underlying issue doesn't matter that much.

They normally say 2 weeks for these results but I've found it's usually longer they have said they will try and prioritise it with the issue with the courier last week.

Superovulation sounds like a good idea to try, in the is your body baby friendly book it says they recommend trying for 3 months with a treatment protocol in place and that a lot of patients who have had failed IVF get success with it.

@StillTrying10000 1 embryo sounds good, it's good that everything is going well with your tests.

@Janefx40 I arrange scans through ultrasound direct, they have a lot of locations, you can see all the availability and get instant confirmation of a booking and they will send you all the images and report immediately after the scan. I should become a directory with all these services I'm recommending! Oh but be aware they do pregnancy stuff as well, the place I go to only had one scan room but I need to avoid eye contact with the other patients who have an appointment before or after me.

@Babydustt12 I haven't heard of anyone being told to repeat an ERA in the report, so I definitely would repeat.

@Gardenlady543
i guess I will repeat it then just to be on the safe side thank you so much

Thank you for your positive comments on the hcg @StillTrying10000 @Janefx40 @VenusStarr

The thing is I feel like my pregnancy tests have stopped getting stronger, Ive used the same ones before and feel like at some point they have gotten really strong and even stronger than the test line, this is not happening now. I will get a new hcg tomorrow😨.

Wow, you also have tests like that in the UK @StillTrying10000 That sounds like a good option!

@VenusStarr I am really excited about your upcoming superovulation, really hope this will be your cycle ❤

@StillTrying10000 Exciting times, sending you baby dust! 🤗What will be your protocol?

@Gardenlady543 I think they also use LIT for DQ Alpha, right?

I have received some new info from the nurse at Dr Shehatas office. She has told me that in addition to having the scans every two weeks there is also an option to get the tests done and get your treatment plan and then continue with it in your home country. This means I would need a doctor from here to prescribe the meds (and treatments like Intralipid) according to Dr Shehatas plan. It is good to know that this option also exists. The nurse also said I could decide which option I choose after getting the treatment plan.

I am interested in DR Shehata over Greece cause he thinks that the Chicago tests dont last the long flight. But the Greek Dr Dimitri was determined that my problem is DQ Alpha and this I Cant test with Dr S....but maybe it is not a big probelm if the treatment is quite similar for someone with DQ ALpha or High NK?

Could also be that I have no immune issues at all and Im just obsessing over them, that is also a possibility 😂😅but then WHAT?

@Violette22 I really don't think urinary pregnancy tests are an accurate quantitative measurement once you've got past the few few days. They can even become negative when the hcg is over a certain level (the hook effect). I completely understand the need to feel in control but I think you will likely cause yourself to worry and it may be unnecessary worry, regular blood tests will be a much better option.

Fertilysis told me to do LIT but when I asked the reproductive immunologist on the Reddit ask me anything he said it could be detrimental.

You can test for DQ alpha in a number of places, this is to do with detecting what alleles you and your partner have, I don't think travel will have an impact on this sample. However some believe that this issue in its own isn't a barrier, rather it's the NK response that has occurred from the immune system activating every time a embryo is present with the same HLA DQA1 genes to the mother. For that you'd need the NK tests. You could always start with testing to see if you have the DQ matching though.

@VenusStarr yay! I'm glad you can do your superovulation round so soon! Great news.

@Gardenlady543 you really do know so much! I just looked up that scan place, but I think the nearest to me is an hour away. May come in useful one day.

@StillTrying10000 brilliant that you're on for transfer next Wednesday!

I've been a plonker (again) and realised when I got home I'd forgotten to take my am tablets, one of which being norethisterone (take 1x am and 1x pm). I'm not sure if I should just skip a dose or take one very late tonight (I took it as soon as I noticed, but about 11 hours late). All the advice online is focused on it being a contraceptive, not for delaying periods for ivf! Gah! I annoy myself so much!

@seven201 don't worry about the noresthisterone. One dose missed won't bring on your period but you may get a few period like cramps or creaks! That's what would happen to me anyway.

I got my results from Mr S ahead of our meeting on Friday. My cytokines seem to be in range now. Will wait to hear what this means but maybe we are headed for transfer! Eeeek

Thank you. I didn't take an extra one in the end. Think it will be alright.

Oh that is excellent!! Hope you get to transfer soon!

That's fab news @Janefx40 🤞

Really pleased to hear that you're all on track @StillTrying10000 you've got a good plan, but hoping that with everything you've put in place for this transfer is what you need.

@seven201 I've never taken that, but hopefully missing one tablet doesn't have a big impact. How long are you on it for? There's a few transfers in the pipeline 🥰

Having a bit of a game getting the gcsf - 2 pharmacies flat our refused, one said they'd do it but had met their quota for the month? Not sure what that means. But I think the prescription is written strangely and isn't clear, so I've messaged the clinic to see if they'll issue a new one. @StillTrying10000 did you say the clinic can order it? I know I don't need it yet anyway, but just in case.

I'm glad Dr S's clinic gave been helpful @Violette22 hopefully you won't need to do it, but if you do, it's an option. Did you say you're getting another hcg draw today? Keeping everything crossed ❤️

I hope everyone is OK 💛

So I got my hcg and it is 801 (it was 278 two days ago)! 😲😍Im a bit shocked, I have 0 symptoms and I swear my lines were not looking strong enough.

@Gardenlady543 so this proves you were right about those lines. But I really believe they must have changed this particular test somehow cause earlier it has worked in a different way and the lines have become as strong as the control and even stronger at this point, now my test line is still fainter than the control.

I guess now I need to decide if I want Dr Dimitri from Life clinic Athens to monitor this pregnancy or not. How does Dr S monitor the pregnancies by the way, does he take some blood tests to see how the body is reacting to the pregnancy and then make possible changes to meds etc?

@VenusStarr I hope you get your prescription thing sorted out!

@Violette22 I am so happy for you! 💜
Sending love and hugs to everyone!

@Violette22 oh amazing news!!! Congratulations.

@VenusStarr I think last tablet is Saturday, baseline scan booked for Thursday (hope the timings work out).

Oh what a nightmare for the prescription. Why why why is nothing ever easy? At least you're not in a rush. What I find frustrating is clinics assume you just know which drugs they can give you direct and if not how you magically get some of the complex ones. Hope you get the answer.

Great news @Violette22 this is a good thing for me to be right about! It sounds like you should put the urinary tests down now and stick to blood tests.

On another subject, my friend has spoken to Gorgy today, she has a similar immune profile to me but does not have a DQ match. He has been advised her to have LIT based on her LAD (which was better than mine) and then take hydroxychloroquine. He also wants to do some more tests. I should probably arrange a consultation with him, but I think I need to go through things in order.

The happiness lasted for 3 hours approx, I just noticed some brown bleed, I cant believe this is happening for the 7th time 😥😥

@Violette22 I'm so sorry. This is worrying but we don't yet know what is happening. Is this what happened in previous pregnancies? Did you have your Hcg measured then?

@Gardenlady543 be prepared if you go to Gorgy. He is famous for being abrupt and his team can also be quite rude I believe. Just go in there prepared for that and you'll be fine!