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 😊

Just curious @Gardenlady543 the fertilysis menstrual microbiome you did was it the full test or just vaginal?

@2021ivfagain I think its totally understandable to lose motivation. perhaps its what your mind and body needs...pizza and red wine! Sending you love xx

@Sar1010 it was the full one, you want the full one.

@2021ivfagain it's absolutely fine to eat pizza and drink wine. You are more than entitled to these aspects of life. I'm sorry everything sounds very tough, I've worked in elderly medicine before and have seen how hard conditions like dementia are on the family. Is your dad in a placement now? That might at least be some relief? It must be so hard caring for him. Can you do some couples counseling with your partner?

Thank you @Gardenlady543
A few Qs :

• I am due to start my period on Saturday, what if the test doesnt arrive on time? Can i store the blood and then use it as a sample or should i wait till the next cycle for fresh blood
• It is says 10 days to receive results would you say thats accurate?
• flora femme: I can't find a link online for it could you please share one?

I think that is all. I really appreciate all your wisdom and kindness!

X

Hi all , hope you are well! Back from long break from all ivf and now planning to start again with next FET. However this time will need intralipids, clexin, steroids, heparin and my doctor recommended embryo glue now . Anyone has an experience with embryo glue? There is some controversy abt it @Gardenlady543

@Sar1010 pretty sure it's just a sterile pot and you need to collect a few drops from the first few hours of flow, can you get a sterile pot from somewhere, could ask your gp for a urine specimen pot or order one from Amazon. You put it in the freezer after collecting it and then take the mid cycle vaginal swab and arrange a courier to pick up both.

They tend to take longer than the 2 weeks, you can email them to try and chase it up when it's getting close to the 2 weeks.

florafemme.com

@Mybabydream I couldn't use embryo glue as it can't be used with hatching embryos which eliminates any tested embryo which have to have assisted hatching for the biopsy. Are your embryos at a stage before hatching? Clexane is heparin, I took inhixa which is a different brand similar to clexane brand, I also did prednisolone and intralipids.

@Gardenlady543 ah good point I’m not sure as they were PGT screened as well

@Gardenlady543 I’ve found a local place - well 1.5 hour drive! What do intralipids. What days did you have your treatment? My clinic don’t do them. Care? Which is the same as yours? What pred dose did you do again? This time was my first time and I did 10mg from cycle day 7 then 20mg 5 days before Transfer? Obviously implanted then stopped.

what about Inhixia? What was your dose and from what cycle day? I’ve got my review tomorrow.

also the idea behind doxy 3 days leading up to Transfer? Is that Incase of infection or Inflamation? Sorry for so many questions x

@Loz2467

Prednisolone 25mg from CD7
Inhixa 40 mg from CD7
Intralipid between CD7-CD10 and then after OTD if positive

I was with care and they do intralipids now I go to cherish in Birmingham.

Doxycycline is prophylactic for microbiome issues, and also I heard it can help with implantation. I did 100mg twice a day for 3 days starting 2 days before transfer.

@Gardenlady543 this is really helpful! Thank you!!! You did the hydroxyclorine too didn’t you? From what I remember you did the NK cell testing didn’t you? I was only given the steroids “empirically” because I haven’t had the testing but apparently immunes are off with any type of endo and adeno due to the High inflammation so it’s meant to affect immune dysfunction? I noticed my Inxhia is only 20mg so I wonder if doing 2 would help due to blood supply being sluggish in adeno!

Did you change anything between your chemical and your successful? I’m assuming a good implantation happened due to the strength of the test but it just stopped.

@Loz2467 yeah as part of my immune plan I had LIT and started hydroxychloroquine around summer 2022. Testing wise I had full autoimmune, Thrombophilia and immune testing including biopsies.

After the chemical I explored a few things:

• I did a full blood panel (this one www.medichecks.com/products/ultimate-performance-blood-test )
• I checked my iron levels, they were normal but if they weren't I was planning on having a iron transfusion. I saw the iron clinic in London to discuss my results as I've had strange results over the years. I did end up taking one ferrous sulphate a day when I my period just to increase values a little bit.
• I had a saline scan to check there were no structural issue after the chemical, this ended up being a wild goose chase as it was abnormal but then a HSG was fine.
• I started on low dose naltrexone which is useful for people with autoantibodies, like my thyroid autoantibodies.
• I had a follow up with Dr Gorgy to see if he recommended anything else, he didn't.

We then ended up needing to change the protocol form letrozole, fyremadel and low dose stims. To just stims. My body reacted strangely to letrozole and fyremadel shut down my body and I've heard it can prevent implantation.

@Gardenlady543 Thank you! I do remember you doing some of those actually! I do have some ferrous sulphate somewhere: I was gonna take it incase my iron was low too.

The NK cell testing. What’s best because I’ve read that with blood one it can be inaccurate if you have adeno as most can leave the blood and go to endometrium so it looks like there is no issue so I’m wondering if endometrium is best to test?

Im hoping today at my review appt we will go into another FET. Maybe repeat the same but ask for intralipids. Or I actually called Cherish 2 days ago and they said they could do them. If that fails then ask if I can go straight into the modified natural but hope there is no gosh back saying I need a follow up. Shall I ask her if she can add that to my file and we discuss it today? Because if I wait it will be 2 periods because of Xmas and my adeno will flare up!

@Loz2467 I think ask about modified natural, I found my clinic wanted to avoid this just because it is more effort in the part of the clinic and they can't spit as many patients in given it's unpredictable. They only started treating me as an individual after a number of unsuccessful transfers. I mean I just did all the immune tests and then discussed the results with a RI. I don't think NK cells alone will tell you much

@Gardenlady543 you was care also wasn’t you? I know they’ve changed the transfer days again at my clinic.

I will definitely say modified natural if my next one doesn’t work.

May ask to up my Inhixia to 40mg rather than 20mg?

Pred dose - do we keep the same and add intralipids.

Just worried because implantation window etc can change can’t it? So would I repeat the same in terms of timing and dose for prog? You said there isn’t much evidence re the ERA is there?

Just have to hope I have some good embryos left seen as we are flying through them :(

worrying incase my last embryo was good and I’ve caused it :( because of the strong implantation not even chemical like.x

@Loz2467 yeah they don't do transfers on tuesdays and sundays at my clinic. I find it so annoying for a private clinic that you're paying thousands to, not to be open every day. They can adjust timing to some extent, they try to advise to use fyremadel to prevent early ovulation but I would avoid this, they also use a hcg trigger which is good and there seems to be some evidence hcg helps with implantation. Don't ask my for sources on that though, some specialists routinely use it though.

Yes I would ask to increase inhixa up, 40mg is the standard dosage unless you are very underweight.

I would ask to increase the prednisolone dose up to the higher dose form the starting point, care wanted me to do what you did and I said no and I wanted the higher dose from the start.

If you're moving from medicated to modified natural then the era won't be transferable, there's also a suggestion that the window is longer in unmedicated cycles. So that's why I said forget it to adding a whole extra 1.5 days and just did it at standard timing.

When is your review?

@Gardenlady543 I think it’s even less that that for mine! Like 3 days a week now they do transfers ! Completely agree, spent an absolute fortune and just seems no movement! It’s just so frustrating that I can’t have a natural cycle inbetween because of the flare and spending most of the year in menopause has been horrific so I panic over that plus will take ages for my older ovaries to wake up after so much prostap so it would be such a wait! :( but I have a feeling she won’t agree to it anyway. My follow up is today!

Sounds good re the higher dose Inhixia and pred. Even though Nk cell testing will still be fine won’t it? Because adeno causes high inflammation and usually high Nk cells anyway. I just haven’t had it tested. But seen as I got implantation on pred and Inhixia May suggest immunes could have been an issue.

Yeah you’re right - I’ve heard about the HCG trigger too so will mention that for the modified natural.

I called cherish the other day and they seemed lovely. Im happy to drive and see if the intralipids help. It’s only a risk of the £230 originally as the next are after positive test arent they when your willing to try everything anyway. Can you sometimes over supress the immunes or is that a myth?

@Loz2467 with reproductive immunology treatments there isn't really a clear answer, it isn't evidence based, it's just what people do when the evidence based treatments haven't worked as advised by the specialists who are the worst case scenarios. Most people in the RI group take 20-25mg of prednisolone from early in the cycle, I think someone said they were told it takes two weeks to have an impact.

How did your appointment go?

@Gardenlady543 yeah I kinda guessed that about evidence based but seems strange it’s the first time I’ve got implantation and used the pred and Inhixia. So potentially it helped for me too and could have been the embryo or I caused it :( still can’t get that out of my head which is hard.

She said let’s stay to the same - told me about the evidence based with NK and said she can send me a breakdown of prices for level 2 tests but I have enough pred to increase the dose if I wanted too. The Greek dr I speak to in London said to take 20mg from earlier in the cycle but it’s obviously not wanting to go against my clinic but then also desperate for it to work. I just didn’t want to over supressed? If that’s even a thing? She didn’t seem to know about NK being linked to adeno. I do want to up my Inhixia too but I won’t have enough.

I asked about going into a modified natural if this didn’t work and she said why when we are down Reg so I explained what I’d found - research briefly and she agreed but said it would be completely natural - Nothing added apart from cyclogest. Then she said it wasn’t fair that I was already asking about the next one! Oops! But I’m paying thousands and thousands and Xmas is approaching so I need a plan in my head to get through! I’m sick of down regulating and waiting months and months. I feel like I’ve annoyed her now though so I’m feeling a bit sad and uncomfortable. Her persona did change :( stressed now!

@Loz2467 you are entitled to try the cycle you want to try. After my first medicated FET I said I don't want to do another I want to do a modified natural and I was persuaded against it, I then went into multiple euploid unsuccessful medicated FETS, what a waste of time, embryos and my health. I was clearly right, because the cycle I had pushed for was the one that worked for me. Inhixa is used for hospital patients to prevent blood clots as they are less mobile at 40mg as a standard dose, I don't see any reason to give you 20mg unless you are significantly underweight.

It sounds like you raised multiple issues and were ignored and made to feel bad for even asking?

@Gardenlady543 oh gosh so you had a similar ordeal! Apart from I don’t know if mine would work yet but in the US and Aus if a failed medicated FET happens they go straight into a modified natural after and tend to have success. I just don’t want to be declines of something that could potentially work for us. Makes me wonder if she would have said that If my partner was sat with me. Her whole persona just changed!!! I mean I get frustrated with customers on a daily basis but I still treat them how they should do when shopping in my store. She should have some empathy about our situations! A loss at 20 weeks. 2 years TTC naturally. Adenomyosis diagnosis. Third transfer chemical! I mean it’s a lot! Plus everything else in between… surgeries, medications and the rest of it! No need to list as we all know here unfortunately.

That’s strange I wonder why she won’t give me 40mg then. I’m not underweight!

Im debating adding in the intralipids? I don’t have allergies. Just a risk but surely adds no harm?!

Maybe didn’t help that I was last consult of the day either!!! And then my natural cycle is gonna be slap bang around Xmas! So I bet that doesn’t pull off anyway!

@Loz2467 it's not ok for a doctor to act like this, it's about shared decision making. It's obviously up to you if you feel comfortable with the plan, but they are your embryos and you need to feel confident that what you're doing is the right thing for you. Wonder if you should ask for a second opinion with a different doctor at your clinic?

@Gardenlady543 I know :( I mean I’m happy to do the same protocol - I might just up my pred anyway and pray it was the embryo. But if it was the embryo would I not of had inplantation failure again? Ugh I’m so stressed and anxious tonight thinking about everything. I felt quite positive going into the last FET because of how much prep I’d done. I may take Dimitris advice and have the intralipids and higher pred dose earlier.

Im worried the natural would fall over Xmas but to use no stimulation at all when I’ve been in menopause most of the year is just crazy! And no HCG trigger shot. But I can address that if the time comes to it. Worried because my blasts left are only early blasts and not expanding :(

@Loz2467 when can you start the medicated FET? Is it soon, maybe do that with a plan to move to modified natural in the new year if the medicated doesn't work.

@Gardenlady543 I’ve sent you a message. The thing is as soon as I ovulate and a natural period which would be December it will cause a flare and would need 2 more months of prostap which takes me straight into a medicated FET. Such a shame she’s agreed to it but it will literally land xmas! Also scared of keep repeating the prostap because of needing another cycle and it affecting my AMH.

@Loz2467 I’m sorry you’re going through this. I have had one natural period and have ovulated twice now without talking hrt to lower fsh or even dhea or ubiquinol so when we had warmer days I was sweating a bit at night. But now with it getting cold again I’m feeling better! I just read up about Prostrap. It must be bad. I spent lots of time on norethisterone and hrt so that just changed my cervical mucus and caused dryness but didn’t sweat much in the end.

I would definitely push for natural modified FET with stims. That’s what I did with 10000 gonasi trigger. I know I miscarried at 8w but I had good implantation but I did not take steroids for slightly high nk cells.

Hi ladies,
thought I would post a little update.

We are currently holidaying in Crete having spent a couple of days in Athens. We had an appointment with fertilysis Dr V regarding a prescription for Neupogen for KIR AA mismatch. This has been prescribed for every two days from around ovulation until BFN or to continue if BFP. We’re having to bring this home in a yeti cooler which we invested in specifically to ensure it remains cool 🙈
Ive also had my first session of pooled donor LIT out here for our full dq alpha match.
The doctor at Locus Medicus in Athens also had a 1 hour consult with us and seems convinced there could be issues with my partners sperm. They do a special test called SPI which I believe only they do. They test for chlamydia and viruses inside the sperm cells…which I assume is different to just testing for chlamydia..

He seems to think as our last pregnancy was a chemical and my HCG was so low that it wasn’t an immune response but more likely a sperm issue.

Im skeptical but then he has published on the topic so worth a try!

if they find anythjng, it’s back for an ultrasound on DH I believe - not entirely sure what this is for but… will keep you posted!

in the meantime I am reading Alan Beer’s Is Your Body Baby Friendly?

How is everyone else doing? X