ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

@Janefx40

Did you say you did not use ivig this time? The thing is my nk cells are only marginally high in blood and most are normal. One reading of mine was 23% and they like it below 20%. What was your highest nk cell reading? Thsnks

I'm really sorry @Gardenlady543 even when you are expecting it, it's still very painful. I hope your clinic are supportive and that Gorgy can help give some insight into might what have happened.

@seven201 I'm glad you have an appointment with Mr Lower scheduled. How are you feeling?

Af made her late entrance known at 4am this morning, so 4 days late which is unusual for me. Very painful but glad I'm not in limbo.

@Gardenlady543 I'm so sorry that things don't seem to be working out. It is utter shit. Thinking of you

@seven201 I'm sorry it's gone this way for you too. I'm really hoping 2023 brings good things.

@VenusStarr glad AF showed but sorry it's painful. Hope you're ok

@2021ivfagain I'm with Mr Shehata now and he doesn't use IVIG. I'm afraid I don't have my results to hand so can't tell you my highest level. If you're not already, I recommend joining the UK Reproductive immunology FB page as there are lots of knowledgable people on there x

@Gardenlady543 it sounds like you've already got started on planning; I take comfort in getting ready to go again too. I hope you and dh are 'ok'. I hope you manage to get stuff booked in/organised.

@VenusStarr that's good your period finally arrived. Sorry it's a painful one.

My period is later than expected so I'm concerned it will muck up my mr lower appt timing as I booked to go on what I thought would be cd9, but it's more likely to be 6 ish now. Will have to wait and see. Just generally fed up with it all but still trucking. I just miss being happy. I'm a completely different person to who I was. I'm not saying I'm miserable 24/7 but I used to be fun. I feel my whole life is centred around battling to make a baby (then keep a baby). It's and I'm just SO boring now. Urgh.

@seven201 I don't find you boring 😘

@Janefx40

Thanks. I’m not on FB but will look into it. What are you taking for immune suppressants? Do you get any side effects? Thanks

@VenusStarr coasting is very relatable. Glad AF came.

@Gardenlady543 i agree that you should think of it as a big step forward, I’m clinging on to that one implantation 🥴

I’m obsessing over how I can productively fill the time before we can try again. I think I’ll try to rule out lots of things through tests for the next few months. Has anyone here done karyotyping? I think we’ll get that done before we eventually get to another cycle. DH’s sperm is so bad we know there’s no chance of it working naturally while we wait either, they don’t move :/

@VenusStarr sorry to hear you're having a painful one, have you got much on with plans, I know you said you were hoping to get some appointments booked in for your partner.

@seven201 there is an amazing illustrator called Jessica Olien who has illustrations about IVF this one represents what you just said. I agree with Jane though, I think you're fun!

@thislittlebird I did Karyotyping I think it's a good thing to test.

Oh gosh today has been a day, I'm not sure what kind of day, but a day seems like a good way to sum it up. The line was gone for the first time today and I needed to call the clinic to tell them, I also needed to ring around and put all my plans in place as there are 3 working days until we have another 3 day weekend and I also had to work.

So I feel I have made some good plans:

• Dr Gorgy can review me virtually tomorrow and I've written a list of questions
• I have preliminary booked in a saline scan with him a week on Friday, just need to get my period and stop bleeding my then, is that doable, it needs to be in the first 12 days of the cycle so it's a bit hard to organise. Today is my first day without progesterone.
• I have booked in my review with my specialist which is a week on Friday so that is timed well as I can debrief with Gorgy first.
• I have hopefully arranged a consultation to start low dose naltrexone which I've heard some good things about with infertility and hypothyroidism, has anyone tried it?
• I have ordered a full blood panel from medichecks, I wanted to check my thyroid, iron status and full blood count and for £20 extra I could get the "ultimate sports performance test" which seems to check for a lot of things, so I thought why not, I am always telling others to do a blood panel regularly and think it's been about a year now since I had a lot of things tested. The pack may or may not come tomorrow and needs to be done in the morning and when fasting so I plan to fast and hope the post comes early and get it sent off pre bank holiday weekend, but we will see.
• I want to book in a iron transfusion but they aren't answering the phone so I assume they are shut for Xmas and I'd need my bloods testing first anyway.

So that makes me sound so productive today and everything seemed to be going well, I put plans in place and managed and work until the end of the day... I saw an issue in my work diary from next week and I think I had a panic attack, I have never had a panic attack before but I was shaking, short of breath and crying. I called my nice manager during the panic attack and told him what has happened over the last few days and how I need it to be changed back, that I can just about cope with my normal workload but I can't have things harder as I just won't cope and he said he can step in if it doesn't get resolved. So hopefully that will be ok, I was doing so well until this happened! In a way it's a good thing he saw how upset I am and knows what's happened, as I think I need people to be a bit gentle around me. He did make a comment about how it must have been an early loss, but in 3.5 years this is the only hope I ever had so it's devastating. I'm just hoping I get some pep talks from the specialists.

@Janefx40 thanks, that's nice! And you @Gardenlady543. That is a very apt illustration!

@Gardenlady543 you have been a very busy and productive woman today. I'm not surprised you had a panic attack. I think sometimes it's easy to get distracted eg by trying to organise and then it can suddenly hit you through something random and then you're a mess. It's good you've let some of it out and let work know. I think you should be fine timing wise for saline sonogram - I think it usually takes me 2-4
Days for period to arrive after stopping progesterone.

@thislittlebird sorry, I've never looked into karyotyping. I can sympathise with the wanting to fill the time. I wish we all had a time machine.

My period arrived so I'll be cd8 for my saline sonogram with mr lower, so that's probably fine.

@Gardenlady543 I'm also not surprised you had a panic attack. That's an overwhelming list, try not to be to hard on yourself so early on. This failed cycle hit me very harder, harder than anything so far, and it's taken me a long time to even stop crying daily. Make sure you cut yourself some slack and maybe try to arrange something nice around all of the medical stuff.

I'll add karyotyping to my list. I did email the secretary at my clinic but she's on leave/its shit so I can't get a price for that just yet.

@seven201 a time machine would be great. not convinced I know how to get through the next few months and my 40th tbh.

@Gardenlady543 how did the appt go?

@thislittlebird I turned 40 in the summer. It is indeed a shitty milestone when struggling with infertility. I made sure I did lots of celebrating though - I went for spreading out the events with different groups of friends and family, so it was great in that respect and a nice distraction.

It's been a busy and stressful day, had the appointment with Gorgy, he doesn't want to make any significant changes. He did think adding in menopur in earlier is a good idea if they are putting me on fyremadel again. He also said he thinks low dose naltrexone is a good idea and I have been able to get a prescription for this through the prescription service at the specialist pharmacy who make it. And they think it should arrive tomorrow and have given me a plan on how to titrate up the dose. He was happy with the Progesteone level and said I could reduce Pio to every other day with cyclogest twice a day but also said daily pio is fine with the cyclogest. Saline scan is booked in for a week but no sign of my period yet. I asked if I should be on metformin with the high afc, PAI 1 mutation and steroids and said I'm doing a hba1c and he said if it's raised he can prescribe it, but otherwise he doesn't think I need it. He isn't concerned about my thyroid levels and said just carry on with my normal thyroid treatment. He doesn't think I need an iron transfusion as it's a similar result to a daily supplement but I got side effects from that, so I feel a infusion would likely be better tolerated and improve the levels more.

I managed to send off a big blood panel today (which was a nightmare as I needed to wait for the post and half needed to be fasting so I ended up taking my bloods twice and then rushing it to the post office when the post arrived- and guess what my car broke down on the journey. Anyway I'm hoping the results are back tomorrow but could be next week and I can speak with an iron clinic and see what they think I should do based on the results.

Overall it seems to have been a productive day but everything continuously went wrong all day with multiple things that were planned not working out and it was all arranged around work and my car breaking down was something I really didn't need, nowhere can fix it for several weeks, so it just felt like I have been fighting against the universe all day.

@Gardenlady543 I’m sorry it’s been such a marathon and so many things going wrong. The universe can be just so shitty and mean sometimes. But it sounds like you have a good planning going forward. I’m also glad to see your boss being supportive.

also sorry to hear things haven’t worked out this time @seven201 . It’s just so rubbish.

sorry been quiet. House move has been chaotic with lots of things going wrong. Then beloved family cat put to sleep on Christmas Eve. Hopeful next few days look a little less topsy turvy and can then focus on getting myself ready and doing what I want to for the transfer to get lining right. All the questions and comments now we’ve bought our forever home about us “starting family” getting me down. People just don’t realise do they.

@Enfys23 so sorry to hear about your cat and on Xmas eve as well, also sounds like a stressful time with the move. Hope that things go well with the cycle, have you got any predicted dates yet for CD1?

Sounds like a full on day @Gardenlady543 what is low dose naltrexone and whats it for? I don't think Shehata uses that. How are you feeling?

Dh has an appointment on 9th Jan with the urologist attached to crp. I've heard mixed things on whether his dna frag score is bad or not. So we'll see.

@Enfys23 I am so sorry about your cat ❤️ one of mine was really ill last Christmas and I'm increasingly aware that we don't have much time left with them, they're 14 this year. Sending love.

Glad you're still on track for Mr Lower @seven201

Hope you're doing ok @thislittlebird part of me feels ok with being childfree but every so often, like Christmas eve and morning, I had a sudden feeling of fear and dread. Its really upsetting and unsettling.

Lots of love to all ❤️

@VenusStarr there is a Dr called Dr Phil Boyle that uses it a lot I think, he is based at NeoFertility in Dublin.

I was listening to this podcast he did, haven't finished it yet though:

podcasts.apple.com/gb/podcast/the-ldn-radio-show-about-low-dose-naltrexone/id1493677721?i=1000550107929

I don't know that much about it, I have seen online that some people have said it has made a huge difference subjectively to various medical issues such as hypothyroidism, other autoimmune conditions, MS, fibromyalgia, chronic fatigue syndrome.

I heard CNY use it in their protocols.

There isn't much research on it, that podcast seems to run through what has been done with research in infertility though.

I was keen to add it in and Dr Gorgy said it sounded like a good idea.

I'll be interested to see what you think, maybe have a listen to the podcast?

I wouldn't be surprised if the urologist feels the dna fragmentation is fine, definitely a good idea to get their opinion. The more specialist opinions and information we have, the better.

Hi all, has anyone tried Bio Kult Candea?

Live bacterial strains:

Lactobacillus casei PXN® 37™, Lactobacillus rhamnosus PXN® 54™, Streptococcus thermophilus PXN® 66™, Lactobacillus acidophilus PXN® 35™, Bifidobacterium longum PXN® 30™, Bifidobacterium breve PXN® 25™, Lactobacillus delbrueckii ssp. bulgaricus PXN® 39™.

I have been using Optibac but this is cheaper and I am spending a fortune on supplements every month! Thank you.

Thank you @Gardenlady543 and @VenusStarr
It is so hard to lose them isn’t it.

CD1 should be around 3/4th Jan so really close now. I’ve asked the clinic about doing modified natural with trigger so waiting to hear back post bank holiday but may well be phoning them with CD1 before I hear back!

Glad the house will be functioning by start of the cycle so can focus on looking after me and hopefully building a thick lining 🤞🏼. There’s been years of grease and grime to clean before even starting unpacking 🤢getting somewhere now though.

Wishing everyone a better 2023 and hopefully there’s good news for people on this thread in 2023 🤞🏼xx

Hi @rosebunched

The strains that have the most evidence of improving the gynaecological microbiome from research are lactobacillus rhamnosus, gr-1 and lactobacillus reuteri, rc-14. Lactobacillus
crispatus also has good evidence but I think most studies look at vaginal preparations. There are other products with different strains in, I take these other products but I tend to alternate with products that have the above strains in on other days.

@Enfys23 I hope they let you do the modified natural cycle.

My blood results came back yesterday evening which I didn't expect on New Year's Day. I am still hyperthyroid, this was taken before I started on low dose naltrexone, randomly my thyroid autoantibodies aren't raised any more, I wonder if it's the steroids/hydroxychloroquine that brought them down. I also have some hormones out of the normal range: estradiol, DHEA and testosterone is low and prolactin is high, again I don't know if it's the steroids that have done this. I have my consultation with the iron clinic on Wednesday and then I'm having the saline scan at the end of the week and also talking to my specialist, I'm hoping she lets me do a modified natural cycle again.

I’m sorry to hear so many of you are still battling through.
I thought it might be helpful to update you that after more than 10 losses (I stopped counting), I have given birth to a beautiful little girl thanks to a drug called Tacrolimus and Dr S.
My waters broke at 35 weeks and although I was given antibiotics within the hour, she was born with a chest infection. We don’t know if she had an infection causing my waters to break or she caught it in the 24 hours between my waters breaking and me giving birth. It’s the same situation as my 2nd trimester loss which Dr S said is likely caused by an immune response in my body.
She has a heart murmur and jaundice which any early baby could have but she did also have some issues with her kidneys. We were worried this was caused by the Tacrolimus but thanks to topping up her feeds so she was really hydrated she recovered well and her kidneys are now working.
I really hope that maybe this drug could help some of you as I had tried everything I could and had thought I’d come to the end of the road when we came across it.
Any questions give me a shout.
Best wishes to you all on your journeys, I think about you all often. Sending love xxx

Hi, my doctor has suggested we might want to do these tests (have previously done ERA and NK). I understand that, depending upon results, treatment may include antibiotics and/or probiotics.

To anyone who has had results from these tests, please would you tell me what probiotics are recommended? I already take optibac for women. Just wondering if this would be sufficient or what else would be recommended?

Has anyone just taken probiotics empirically and foregoing the tests?

Thanks

@StillTrying10000 oh my goodness! CONGRATULATIONS!!!! How old is little baby girl now? What type of monitoring does she need now for her heart and kidneys? Sounds like a stressful time for you. I'm so happy you got your happy ending after battling through so much! How are you? Are you traumatised after the early birth and medical concerns? Big her a big cuddle from all of us here.

I'm pretty sure mine treatment optibac for women plus canesflor for 5 days then one a week. I now take a different one, femdophilus (the 5 billion one that has to be stored in the fridge), mainly and sometimes a different one to mix up the types/ingredients. My results showed low levels of good bacterial, but not really bad.

@StillTrying10000

Congratulations. I have a friend who used the same drug.

@Gardenlady543 How are you doing? You seem to be really organised in the next stages.

I’m feeling a bit lost at present and don’t know what to do for the best. My husband is unwell for the third time and he is self-isolating just in case and because I will be on prednisone soon and ivig later so I’m trying to delay my cycle. At present, he is too ill to drive to London and look after our son. The second issue is gardnerella which is getting better without antibiotics but consultant doesn’t mind me taking them again at beginning of cycle. Lastly, my mum waited 28 hours for an ambulance and had to have an operation to remove haematomas which were so serious she could’ve got sepsis. The other concern is she waiting for another operation and is off blood thinners while she waits. I’m so anxious as my Dad was taken off blood thinners when I was pregnant and had a massive stroke which he nearly died from.

I’m sorry to digress but I’m all over the place and don’t know what to do. I’m taking a few extra days of norethisterone as my husband is unwell and I’m by the phone contacting the hospital everyday as well as looking after my son and husband.

Happy New Year all.

Whilst I await my diagnostic scan for endometriosis, could anyone recommend a fertility clinic that specialises in women with endometriosis? I need to have my AMH tested to help decide on next steps (surgery/IVF) and want to make sure I choose a clinic experienced with women suffering from endo.

Any advice would be appreciated.

Thanks
Lucy