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

Oh crippes, I hope it wasn't a side effect of the estradiol that kicked it off. It's really frustrating not having the answers

@seven201 when is your follow up with Mr S?

@Gardenlady543 when might the meds start having an effect? Hope you start feeling less tired soon at least x

My immune tests are back:

NK profile: the NK percentage was found increased compared to the reference range.
CD56+/CD16+ 14.98%

Th1/Th2 assay: within the reference range.

Nk cytotoxicity assay: within the reference range for all ratios.

LAD: (the thing he said would be abnormal for almost everyone) result I got is considered favorable for pregnancy

HLA DQalpha-1: complete match for DQA1-0101 and DQA1-0102

Interpretation of results and recommendations:
Elevated concentration of NK cells as well as HLA matching between partners have been associated with reproductive immunopathology, such as recurrent spontaneous abortions (RSA), idiopathic infertility and implantation failures in both natural and assisted reproduction attempts, while early abortive events are often misinterpreted as inability to conceive.

Overall, based on the above results, your doctor may consider anti-inflammatory and immune modulating treatment such as Lymphocyte Immunization Therapy (LIT) and/or Intralipid treatment.

I did this because I thought me and my husband could have the HLA match, we seem to have a complete match for 2.

Any help with this stuff?

@Janefx40 hello. How are you doing? I'm seeing Mr S on Monday. Not long now.

@Gardenlady543 I'm sorry but I don't understand what that all means I'm afraid. So having a match is bad is it? But all treatable?

@Gardenlady543 I'm not great at interpreting but there's a FB site called UK Reproductive Immunology Support and they are good on answering questions on matches.

Dr Gorgy is the only one I know of who does LIT treatment.

Do you ever read Dr Sher's blog? He talks a lot about immune stuff and can be quite interesting.

Sorry not to be more help x

@seven201 and @Janefx40 it's a minefield, my results seem ok except for the HLA match. My understanding is that it basically makes a couple incompatible and I'm not sure it can be overcome in me. It's the body's way of preventing inbreeding by not allowing implantation of an embryos made from a partner with similar HLA genes.

@Gardenlady543 I think there are differing opinions on the matching. My understanding is that it is often a problem with a second child. I think there are women who have had healthy pregnancies but struggle with their second and then find a match. Some people think that it activates after one birth so if that's the case then there is definitely hope. Some think it's all nonsense and others think it is problematic. I'm not sure there's much consensus on this yet.

I would definitely check out that FB site as lots of women have posted about matches and partial matches and had responses.

Oh gosh. What a result. How very frustrating that there's no definite answer. You never seem to ever just get a straightforward result do you?!

I think maybe I should look into the same thing.

@Gardenlady543 I'm sorry your results have revealed more complications. I don't know much about the HLA is that the same as dq alpha? I agree with @Janefx40 if you're not already on the Facebook group UK reproductive immunology, join that. I think with those results Dr Gorgy is the one to see (Dr S doesn't test for that). I'm sure that's who @Cream123 saw too.
Stupid question, but how are you feeling? ❤️

How are you @seven201? Not long til your results appointment now.

@Janefx40 I hope you're OK, are you recovered from covid now? Did you find humira?

@StillTrying10000 thinking of you 💜

I had an awful day yesterday, which is rubbish as dh and I are off for his birthday and had been having a lovely time, but just got massively triggered and in a big grief wave.
Also, tmi, but I think I've got thrush I haven't had it for years before we got together. It's typical that we've been more intimate recently (but no where near back to normal, whatever that is). My tests all came back fine in August, but if it is thrush and I treat it, will that affect my microbiome? Or will thrush in itself affect my microbiome, even when it's gone?

Hope you're all OK. I'm getting more anxious as time is passing. Seeing Dr S on Monday, we've decided to tell him about the sitagliptin, expecting him to be cross, we'll see xx

Hi everyone, sorry to see you're all having such a tough time.
@VenusStarr I can't believe your appointment is finally here! I hope it goes well and he's in a good mood. Maybe leave the stagliptin until the end :-)
I'm sorry you're having an emotional time.
Eh! Thrush is the worst! If you catch and treat it quickly it shouldn't infect any deeper into your womb as it's usually something you catch on your extremities. When I had it in pregnancy the doctor said make sure you use the cream on the infected area- do not take the digestible pill.

@Gardenlady543 I'm sorry to see you've had that diagnosis to manage. Another set back :-( When I last saw Dr S I frantically listed all the immune tests I'd read about online to get his view, which included LIT. He said that was a trend back in the 90's but no longer seen as valuable and I should ignore anything that speaks about it. Intralipids and steroids are the current respected treatments. Clearly that's just one persons view though and I do see the logic to LIT myself.

I have egg harvest on Monday and have been in agony this time which is so odd as last 3 harvests were nothing like this. I hope everything will be okay for implantation on Saturday. My day 3 update today said 4 embryos look good so I really hope as many of them as possible make it to day 5. I've also already convinced the clinic to give me a Dr S appointment on my OTD as I'm not at all optimistic it will work this time again. I know he said I have to have a month off but I need to speak to him or I'll go mad. It will be Mother's Day and the date I gave birth to my baby last year so I know mentally it will be awful it failing this 5th time. xxx

@VenusStarr sorry you've had a rough day yesterday. I think it's like that - you can have happy days and normal days and then suddenly be hit by waves. You've been through a lot. It's not surprising. Talking of surprising, when is DH's surprise party?

Sorry about the thrush. Can't answer about the micro biome but I expect others can.

Good luck with Mr S. Hope he's not cross! It's your body. And these consultants get bees in their bonnets about things but it doesn't make them right.

I picked up Humira today from Wimbledon. The next cheapest was about £1k so it was worth it to save £600. I went to a friend's house and worked from there after so that was nice at least. I can't take it until next week as he said 2 weeks from a negative Covid test and as I've been quite unwell, I don't want to take a chance on doing it sooner.

Love to everyone xxx

Thank you @Janefx40 his party is tomorrow! Eek 😬 we went out for a lovely dinner last night too. He's definitely been spoilt and it's been lovely 💛

I'm glad you're all set with the humira and can start it soon.

@StillTrying10000 that's good news, I have been thinking of you, so I'm pleased to hear your update. I'm sorry to hear you've been in pain though. Sending you lots of love for transfer tomorrow ❤️

So, I'm not sure it is thrush. I just have an odd feeling low down. I had a tiny bit of discharge yesterday when I posted, but none since and no other thrush-like signs. I can't really describe the feeling I've got though, lower pelvis / womb area. I'm 7-9dpo, had a weird bbt chart, thought I'd ovulated and all the physical signs were there, but then came back a couple of days later and my temps dipped then rose. It's almost like I'm hyperaware of that area, like fuzzy feelings. I'm wondering what my first period on sitagliptin will be like too.

Hope you're doing OK @Gardenlady543 @seven201 xx

@VenusStarr sorry about your rubbish day. Sometimes the pressure builds and it just has to be released. Good luck on Monday! I'll try and not put him in a bad mood for you! I used to have recurrent thrush, randomly having a baby cleared it up and now only get it occasionally. Personally I found the canesten cream that you syringe in combined with flucazone tablet (can't take that near to transfer/when pregnant) the most effective. You can buy BV tests in chemists and Amazon. Do you think it could be an implantation thing and not an infection then? Ooh! It's so hard to not overthink everything isn't it! I hope the party goes really well.

@StillTrying10000 oh wow. Your egg collection/transfer seems to have come around fast. I'm sure it doesn't feel that way for you! Has the pain eased up at all? Fingers crossed for your follicles/eggs!

@Janefx40 well done on your bargain hunting. That's a great saving. Are you still suffering the effects of covid then? Poor thing.

Haha! I hope he's not in a bad mood @seven201 I don't think implantation as we didn't have sex until the day after ovulation (although I thought it was 4 days after but ff recalculated it). I think it might be the sitagliptin and that I'm in for a heavy period. I hope it means the meds are working 🤞

Good luck today @StillTrying10000 ❤️

@VenusStarr thanks :) it’s good to know which Uk specialists deal with this stuff. When I initially spoke to the company that does the test they mentioned that Gorgy does LIT. How are you feeling now with your symptoms?

Thanks @StillTrying10000 from what I’ve seen specialists are so variable, in the USA there is an expert called Dr Braverman who says it’s treatable (although I think treatable means expensive immune treatment), then another called Dr Sher who says it’s not and that the immune treatment won’t be able to overcome the constant attack and that the options are donor sperm or surrogacy. I have a terrible memory at the moment did you have collection last Monday and transfer was planned for today? How many eggs did they get and how many made it to blast, did the transfer go ok?

I sent off some more blood tests, to check the other type of thyroid antibody that I haven’t had tested and a panel of other stuff: iron, vitamin d, b12. I also have a referral to an endocrinologist, but most are only working remotely and there is a bit of a wait for appointments. I am speaking to the doctor from the immune lab at the end of March.

How is everyone doing, does anyone have important tests or appointments due soon?

Good luck tomorrow @VenusStarr and @seven201 I hope he has lots of productive ideas for you both. Hopefully after a sunny weekend he's going to be in a great mood.

@Gardenlady543 it's so strange that these specialist can draw such different conclusions and been sooo certain their view is correct. Are you thinking of looking into LIT treatment now you have those results?

@Janefx40 well done on finding a better price for the humeria, let us know how you get on with it. x

Transfer of a 5BA yesterday went well, first time I had a female consultant and it was a much more comfortable experience. My mum took me as DH is on a stag do and she was actually great. Came in with me and really enjoyed it. It's hard to remember how exciting it once was after all the failures. It helped as I was so upset privately as I have no hope this is ever going to work anymore but pulled myself together in front of her (we don't do crying as a family).
There are 3 or 4 more embryos but are all a bit slow so they came in first thing this morning (day 6) to biopsy and freeze but said they would wait until later today now to see how they get on. I feel so bad they are stuck waiting for them on a Sunday but said I'd really appreciate them getting as many as possible as I don't think we can afford another harvest and I still haven't cracked the MC issue. I hope you're all able to enjoy your Sundays x

Congrats on being PUPO @StillTrying10000 don't feel bad this is the embryologist's job, they have to do their job 7 days a week, embryos don't take weekends :)

@StillTrying10000 oh well done! I'm glad today went smoothly. Fingers crossed for your remaining embryos for the testing.

@Gardenlady543 good idea for the extra tests and seeing a endocrinologist.

@seven201 @VenusStarr good luck with your appointments today x
@Gardenlady543 thank you xx

Sorry I've not been around much the last few days and not responded individually. Had a birthday and was organising an event too so just busy.

Wanted to say good luck to @seven201 and @VenusStarr for your appointments with Mr S.

@StillTrying10000 congrats on the transfer!

Will catch up properly later xxx

Thank you!

@StillTrying10000 how are you feeling? Are you working or do you have the day off?

@Janefx40 happy birthday (if it was your birthday)! How are you doing?

Good luck for the appointments @seven201 and @VenusStarr let us know how you get on.

My repeat blood tests came back, I don't know if people remember in March 2021 they thought I had haemochromatosis because my transferrin sats were so high, they are now normal. I wonder if this was a sign I had a thyroid problem then.

I have thyroglobulin antibodies, they are 416 (normal range is under 115) so I do have hashimotos (autoimmune hypothyroidism). Interestingly my thyroid function is in range now (TSH 1.52), this was after just 7 days of treatment and it usually takes 4-6 weeks to get into the system properly, so I'm worried I could develop hyperthyroidism.

I've booked in with a thyroid expert who I'll see a week today. I'm hoping they can shed some light on when this started and the implications for treatment.

@Gardenlady543 my goodness! This is such a roller coaster. I just can't understand how your TSH is now in range. It's just so bizarre. Am glad you have this appointment next week but do you think you should call your GP and ask about the meds? How are you feeling about it all?

@seven201 yes it was my birthday. Had a lovely weekend with lots going on. What time are you seeing Mr S?

@Janefx40 I'm in the waiting room now. Feel a bit nervous. Didn't bring my dh this time.

@Gardenlady543 what on Earth is going on? I do wonder if you should reduce your dose now, as presumably you can make it too low?

I'm out. And have no idea . Phase 1 is humira as my tnf-alpha is a bit high. Phase 2 he won't tell me about yet - but it's immunology related 'positive titre 1:80 homogeneous' and nk cells activation marker is high.

Also wants me up my metformin to 3g (currently on 1.5 that I thought was already high) and take inofolic.

Might go to Wimbledon on the hunt for humira. Got to go and do some googling!