ERA/EMMA/ALICE Testing Thread 3

[Janefx40]

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

[quote Gardenlady543]@Dochas1211 I asked about putting me on steroids without a test indicating I need them and my specialist said no. I have a feeling that she will be against an unmedicated FET as well, but I've had enough. I'm worried my lining might not thicken up enough for an unmedicated FET, I guess all I can do is try. [/quote]
Do you do acupuncture? My acupuncture lady has this machine thing that connects from your pelvis to legs to make a circuit that buzzes and is meant to help blood flow to the uterus! No idea if it doe actually work. How about just taking viagra (that's on my meds list for ivf) - oh actually, is that the one that didn't agree with you? Vitamin e supposedly helps, although I've never seen a difference with it so don't take it any more.

@AdrianeMole I'm glad your appointment was useful. That is very annoying about the folate. It sounded at first like a really bad problem found, but at least has a simple solution. How old are you now? Eupaloid embryos is great.

When do people take aspirin from? Some online stuff says don't take before 8 weeks as it can affect implantation. I've been taking it from after ovulation and only 75, but I know some take 150. When I had my dd I had to take 75 from when I first saw a midwife as I have high blood pressure.

I think I've decided to try and see Dr Shehata as I like the sound of the clinic and logistically it should work. Just got to hope the waiting list for an appointment isn't too long. I'm still not bleeding yet but I had to squint to see the line this morning.

Thanks @seven201. I don't even know if this is a very important factor or not, it seems strange that he said go on Amazon and buy some vitamins. Why don't they sell that at Boots etc? I'm 41.
I think it's that he's saying if I'm miscarrying multiple euploids then its probably not the embryos. Although he is going to test DP for blood clotting stuff as well as me as that could be an issue too and if so aspirin he said is better than heparin as aspirin crosses the placenta.

I can't advise on the aspirin as it wasn't prescribed to me before.

I'll be interested in how you get on at Dr Shehata. Hope you get an appointment soon.

I'm no medical expert but ARGC put pretty much everyone on 75mg aspirin. I can't quite remember when I started but definitely was taking it post transfer and before pregnancy test x

@AdrianeMole they probably do sell them at boots, but it's just not the standard version. Or maybe he's has share in Amazon! It's good that he's testing your dh and doing those other tests for you. One step forward. Just wish there was a fast forward button for us!

@Janefx40 aghhh. So easy to overthink absolute everything during the wait. When is test day?

That's reassuring about the aspirin. I hate it when the advice is completely contradictory so you have no harm if you are doing something good, bad or something that makes absolutely no difference!

@AdrianeMole I think it's good he told you to go to Amazon! NHS and old school thinking was to give 5mg of folic acid which doesn't necessarily solve anything if you can't process it! The theory seemed to be that if you give a mega dose some will make it through but from what I've read this doesn't sound right. Anyway I suspect maybe pharmacies don't prescribe folate as I've only been given high dose folic acid on prescription and actually made the decision myself to sack it off and go to Amazon. 2mg sounds a lot but not sure it does any harm. I've always taken 1mg from Jarrow bought on Amazon, on basis that that brand is recommended in it starts with the egg.

I have homozygous mthfr mutation btw hence needing to look into this.

Sorry to send bitty messages... @AdrianeMole the other thing I was recommended for mthfr was clexane aka lwmh injections. The evidence base for this doesn't seem to be super established but I was told it's a no harm or low harm to the mother kind of medication so if it helps it's worth a go. The theory would be similar to aspirin in that it's also a blood thinner.

@AdrianeMole I'm homozygous for MTHFR and like @whatcangowrong I was initially told by my specialist to take 5mg of folic acid, which I had my GP prescribe, then I read that it can be harmful and the best option is to take methylfolate.

The MTHFR mutation is so common I'm surprised that all folate isn't in the methylfolate form. Some prenatal vitamins have methylfolate rather than folate for this reason. I decided to go with 5mg of methylfolate, I'm currently using this one www.amazon.co.uk/dp/B01N0QV85S/ref=cmswrcpapigltiE66RT7EXQF4VYRPQQ5Y4?encoding=UTF8&psc=1

@seven201 I tried acupuncture earlier this year but it didn't really do anything and now I can't schedule it with work :(

I've tried l-arginine, vitamin E, castor oil, pomegranate, beetroot juice. Nothing really makes much difference. I did have an improvement after my microbiome was treated. I've always been quite slim so my specialist says it's unlikely I'm ever going to have a really thick lining. I guess if it can get to over 7mm it will hopefully be ok for a transfer.

@Janefx40 yeah I agree it's worth a shot, the finance package said they charge if more than one cycle is cancelled, but the cancellation charge seems to be less than the cost of medication that I won't be buying.

Thanks @whatcangowrong and @Gardenlady543

I hope everyone's had a good week.
I just thought it might be worth sharing my experience for anyone who finds this thread thinking about having the EMMA&ALICE tests. I took 2 paracetamol & ibuprofen an hour before. There was a bit of a concern that I'd had sex this week encase I am pregnant (I wasn't aware I wasn't meant to) - so that's worth knowing. I was very pleasantly surprised that the actual test itself didn't hurt me at all, I was fully awake and honestly not even a twinge (apart from the inventible clit pinch from the speculum). Everyone was so lovely too. Afterwards there was A LOT of bleeding. I'm talking masacre level, unstoppable, the great flood type, so take a whole packet of giant pads with you. Oww and don't wear a white top like I did! But yes, overall not nearly as scary as I had expected. Now the dreaded TWW for the results! x

@StillTrying10000 yes I had to do a pregnancy test before mine. I will say I’ve done 2 of them and I haven’t had anything more than a small bit of spotting. Did they take a very large sample to cause so much bleeding? Hope you are ok.

@Dochas1211 Oww really?! I had assumed everyone had this level of bleeding but thinking back now the nurses did all seam a bit caught off guard by it, they weren't ready with any pads or towels for me. I have no idea what sample size they took as I couldn't see over my legs up in the air. Weird. Maybe they nicked me somehow to cause much more bleeding than normal. x

That's interesting. Might was a short intense period cramp feeling. Can't remember if I had any bleeding which must mean it was none or very little.

I need help deciding between dr Shehata and prof quenby clinic. Both can see me in a month and a bit ish.

Shehata - 1 hr drive and has appointments on my day off! Private patient so presumably very expensive, but I don't mind using saving on this, but we're not loaded, although my dad has said he'll help out (bless him!)

Quenby - 2 1/2 hr drive. Nhs miscarriage clinic. Does anyone know if extra /add on tests will be added so actually could cost quite a bit? First appt at least would be video call. Nightmare work wise as I'm a secondary teacher and they don't do appointments at all on my day off. Need to get a referral from my gp - could try on Monday but very hard to get gp appt.

How do they differ approach wise? I'm leaning towards Shehata still but am I just throwing money away unnecessarily? I need to factor in the stress of juggling appts around work - I find that the most stressful part.

I was all set for shehata until I had a reply from the quenby miscarriage clinic.

My sister says I should do both at once but I think that would be massively confusing!

I should add quenby does have after school appts, but not sure if that would work for tests too or just consultations.

@StillTrying10000 well done for getting through the biopsy, I hope you have something relaxing planned for the weekend.

@seven201 if they both have the same waiting list then I would go for Quenby, get the free tests she offers. If there are tests she doesn't offer that you want then I'm sure you can source them privately. I should think you've had a lot of the tests any way with the hysteroscopy and ERA EMMA ALICE. It may just be thrombophilia screen, autoantibodies (I had these blood tests at care, they were £1500), uterine Nk cells. Others may know if she checks other things.

@seven201 I was with Epsom NHS miscarriage clinic and after I had another loss under their treatment plan the consultant said if I could afford to go private there are a lot more tests and treatments that they can offer me. So it would be cheaper to try NHS first but may not work and would take time. I kinda wish I had just gone private straight away but had been scared off by the cost. But now I'm paying the high costs anyway and lost all that time whists my ovarian reserve dropped. x

@Gardenlady543 just saw what you said about steroids. That’s a pity your consultant won’t approve them. Could be worth asking again and specifying low dose of 10mg as I know some people are on up to 40mg so maybe that’s what she was thinking when she said no.

I hope she approves your unmedicated FET. As @Janefx40 it’s only your own time at stake if lining doesn’t play ball and it gets cancelled.

Hope you’re doing ok @janefx40! Another day of TWW done!

@StillTrying10000 yeah I would nearly ask in a follow up why there was so much bleeding as I don’t think that’s the norm. Must’ve been stressful for you.

Hi @seven201 I saw professor Quenby a couple of weeks after my results appointment with Dr Shehata. She is totally against his approach, doesn't agree with steroids / hydroxychloroquine. She was pushing us to go on the cerm trial but at the time we didn't want to take that much time out ttc. Plus I've now done those tests and I don't have endomitritis, so I'd have only been offered early scans and progesterone with Quenby.
I'd already had the nk cells biopsy and that was normal (at the time) and my lupus anticoagulant bloods etc were normal, so she wasn't able to offer much for me.

Dr Shehata is expensive and the ongoing treatment adds up. I've obviously had 2 losses under his care, so I'm not sure I'm the best advert! But I do feel like he does genuinely believe we can have a baby and my situation is really complex. He's never said to us, just keep trying and I'm sure you'll get there which is what I got from both Tommy's and Quenby. I feel he does want to help and find out why I keep losing pregnancies, it just costs a lot.

If you go with Quenby, check when you're able to do the blood tests as you've recently had a loss. Tommy's Birmingham say you have to wait 12 weeks after a miscarriage and if anything shows, you need a retest to confirm the diagnosis. Dr Shehata did all my bloods within one month of my 4th loss.

@StillTrying10000 I'm glad you've had your biopsy, the bleeding doesn't sound good though. Mine was the opposite, so painful but no bleeding. I hope you aren't waiting too long for your results 🤞

Thank you everyone. After weighing it all up I booked up with dr Shehata for the end of feb. I just can't handle a potential delay that starting off with nhs might bring.

The email appt letter says we can't ttc as the appointment would be pointless if I am pregnant. The appointment is cd 3 ish so part of me thinks we should try naturally this month, but I think we shouldn't as this appointment could be the thing that turns things round for us.

I started bleeding this afternoon so at least I know for sure now.

That sounds like a good plan @seven201 I'm glad you've got a date in the diary.

I think I personally wouldn't try to conceive naturally. I guess because this has been two almost identical experiences for you in the last few weeks, if the tests come back normal then it's likely the embryo and your best chance is to get on with Ivf with the euploids you have. If it does pick up a problem then really it would be better to know before trying again. I don't know, others might disagree. I guess for me it's like my microbiome, I've completely given up on trying naturally because I know my best chance is to keep the microbiome normal and do IVF.

I would wait @seven201 he asks you to have cd1-3 bloods to do your lh / fsh, so that would good timing. I had to go to my GP to do it.
I'm sorry you're bleeding x

Thank you @Gardenlady543 and @VenusStarr you both talk a lot of sense.

I'm going to try and get a gp appt on Monday to see if I can get some blood tests done to take with me to save a tiny bit of money and time. Does anyone know which ones I should request?

Thyroid, vit d, a cd1-3 one (although timing prob won't work). What else?

The thought of not having to ttc this month is very appealing in some respects!

@seven201

Day 2-4
LH
FSH
Oestradiol
Testosterone
DHEA
Sex hormone binding globulin
Prolactin
AMH

The full works
FBC
U&E
Bone profile
LFT
Coag
CRP
TFT’s
Vitamin D
Haematinics (Iron, B12 and folate)
Fasting glucose
Fasting cholesterol
HbA1c

You could try your luck and ask for them to send off a thrombophilia screen and test for autoantibodies (there are a lot of tests though, I don't imagine they will do a full screen, but may be helpful if they can test for any of them).