3rd BFN, thoughts on immune testing and treatments?

[Astride0]

Hello everyone,

I've found it really helpful to read you.

Sadly I have just had a 3rd BFN, after a fresh transfer and 2 FETs. This is getting quite hard, and I'm unsure what to do next.

I wondered if anyone has pursued immune testing. Which tests and treatment did you receive and were they helpful? I know some treatments are controversial. Did you go to a specialist clinic or doctor to do this or did you manage to get it from your regular clinic?

After our first failure I pushed to test ANA antibodies and tested positive, but our clinic wouldn't offer steroids due to Covid. Has anyone had any success getting steroids treatment recently?

We are under 35, and our clinic's success rate is around 50%, so IVF should have worked by now. My partner has slightly elevated abnormality, but we were told this is compensated by sperm numbers. We also did ICSI.

If anyone has walked this path before and has any word of wisdom, or suggestions I would be very grateful.

All the best x

[IVFat40]

Hello hun, so sorry about your unsuccessful transfers, they're heart breaking aren't they. After 5 failed transfers (but I'm older than you) I went for uterine natural killer cell testing (at the clinic run at Coventry hospital with Warwick University), which came out high and they recommended steroids (prednisolone) and uterine scratch. Based on the letter from the specialist doctors (I think they're quite well respected) my clinic prescribed the steroids last month without any resistance (TBH I was expecting them to try and say no). Only thing is you are told you need to have had the covid vaccine, but I'm a fan of vaccination anyway and had already had two doses. Don't yet know if the steroids will help though, first FET with them this month.

[Astride0 in reply to IVFat40]

Thank you for your reply. Sorry to hear we are on the same path, but it's really good to know that you got an answer and a tailored treatment. I had one of Coventry's doctors on my list of specialists, so I will investigate. Can I ask how long it took to organise the test and if you did you do others at the same time?

I wish you the best with this round and hope it works! I have a family member who had immune issues (ANA antibodies), steroids worked straight away for them, and they had twins after many prior failed rounds.

[IVFat40 in reply to Astride0]

It was around a 2-3 month wait from contacting the specialist team at Coventry to starting the biopsy process (they do 2 biopsies in consecutive months). For me I just had the uNK cell testing at Coventry, as a private patient as part of the trial they're running there (I'm not sure if they offer anything else privately). Separately from that I had the ERA test at my clinic, and a hysteroscopy through the NHS.

Thank you for your kind words hun, fingers crossed for us both.

[leo1980 in reply to IVFat40]

Just jumping on here… let me know too about the use of steriods. I am on them at the moment 😬

[IVFat40 in reply to leo1980]

They're not much fun are they hun, but hopefully very much worth it!

[Seren0119]

I went to a specialist immune clinic in Epsom after many failed rounds and it worked for me….I would 100% recommend x

[Astride0 in reply to Seren0119]

Thank you, this gives me hope. Can I ask which tests you went for? There are quite a few and I'm not sure whether to select NK cells or go for a full array and test ERA and company at the same time. X

[Seren0119 in reply to Astride0]

Will message you clinic separately in messenger x

[Hidden in reply to Seren0119]

Hi, I’m so sorry to but in but could you please send me a note of the tests also? In a similar position with 3rd failed round and 2 failed fresh transfers x

[Hopedream in reply to Seren0119]

Hi can u message me also. I have had 7 failed tranfers I’m 29 my partner 32 and no underlining health issues, my clinic won’t test me for anything! Xx

[Mahriya]

Hey lovely, so sorry to hear about the bfn. I’m in the same boat and just had my third failed cycle last month. I know exactly how you’re feeling, it’s a very difficult thing to go through. My clinic doesn’t offer no investigation and they said there isn’t enough evidence behind nk cell tests and they won’t offer steroids due to Covid anyway. I’m still waiting for their letter to contact my GP and see if I can get an immunity screening and some other tests. I’ve also looked into the Coventry one that another lady mentioned but my clinic won’t offer the medication even if the results come back positive. I have two 6day blastocysts and don’t feel too positive since the clinic doesn’t offer anything new so I’ll try a natural FET next. I’m planning to go abroad for a full investigation anyway so I can get all the tests and biopsies done at once and do a fresh cycle if needed. Best of luck in your journey xx

[Astride0 in reply to Mahriya]

Hi Mahriya,I hear you. Some clinics take a standard approach, but it doesn't work for everyone, so unfortunately if you are the 5% you really need to advocate for yourself to get tailored care.

The no steroids due to Covid rule is frustrating. Especially as I know a couple of people who have been given steroids recently for pain relief.

Which tests are you trying to do with the NHS? I need a fresh cycle, so I have a follow up appointment in a few weeks, and will ask again. If they don't support further test and treatments I think I will switch clinics.

All the best with your overseas treatment. I suppose you always have the option to transfer your remaining embryos to your new clinic.

X

[Mahriya in reply to Astride0]

Hey again. The clinic advised of some tests to get done through GP so I’m waiting for a call back to see if they will actually refer me for these tests: anti nuclear

Anti mitochondrial

antibodies

auto immune screen

inflammatory screen with esr/crp

full thrombophilia

I’m going to ask for a full thyroid check as well since last time they only testes TSH levels.

Wish me luck with my GP appointment xx

[Astride0 in reply to Mahriya]

Good luck! I hope they do xxx

[Redsequin]

No advice: I just wanted to say UGH I'm so so sorry. I really hope you're able to get some further tests done and the answers you deserve. Sending virtual hugs 🧡🧡🧡

[Astride0 in reply to Redsequin]

Thank you! Your support means a lot. I hope you are well ❤️

[XOXO13]

Hey,

So sorry you’ve experienced three unsuccessful transfers 💔 Make sure you take some time to look after yourself, to heal mentally and physically.

My third transfer ended in a CP, I transferred two 3AB blastocysts and had blood thinners from day of transfer and I think that helped me get to that stage. We had explored lots of tests including hysteroscopy, HyCoSy, karyotype screening and many more and nothing was really showing up as an issue other than elevated blood clotting markers (hence the blood thinners). My consultant at the time wanted to go again and not change anything but I just didn’t trust the same process when it had given me only heartache.

I would get poorly with each transfer like swollen glands and a fever so I was convinced my body was fighting the embryo - scientifically not proven but my gut still told me to check it out. So we did some research and moved clinics to one who specialises in immunology. I had those tests and my NK cells came back very elevated alongside thyroid antibodies, both of which you need steroids to treat.

For my fourth transfer, I did a new fresh cycle. It was a short protocol but really intense, I was monitored daily and also put on blood thinners and dexamethasone from day one of Stims. I also had intrapilids once before transfer. That cycle was successful and I’m now just over 23 weeks with twins. I really believe that it was a mixture of things that helped me with this transfer.

The first in general being my mental health - just a change in clinic made me feel more positive, as if I was starting again and I focused a lot on my physical health alongside that. Lots of walking, yoga, eating nutritious foods so I felt healthy and calm which was needed for such an intense protocol. The second was starting the blood thinners as early as I did and the third I think was the steroids (I continued with them until I was about 13 weeks pregnant and was monitored every three weeks up until 21 weeks, having two more intrapilids to control my immune system).

I know it’s controversial in the world of IVF, but for me I believe the steroid treatment helped my immune system to accept the embryos. There is a lot of research on it to say it has helped so many others too. That said, even those on steroid treatment don’t have luck straight away as it also comes down to the quality of the embryo and whether it’s chromosomal normal. But I think it helps as it did for me.

I also tested positive for ANA twice, with a kilter of 1:80 both times which I’m told is fairly common and it’s only if it’s more elevated than that would they look at treatment for it. Which I thought was blood thinners but I could be wrong?

I hope this was useful, sorry it’s a long post!

Good luck 🤞🏻 🍀 xxx

[K8dferXdder in reply to XOXO13]

Hello, that’s really good your new clinic did all the tests and gave you the right treatment. Do you mind messaging me the clinic - I am based in London and looking to change clinics currently. Thank you and good luck 🤞

[Astride0 in reply to XOXO13]

Aw, thank you this is so helpful. This is really interesting about ANA. I'm also 1/80 and was told this is slightly elevated, but I wasn't aware of the higher threshold. I suppose this is good news.You could be right about blood thinners... I know someone who had steroids for it and was successful, but this was in France so they might have a different approach.

It would be helpful to have the name of your clinic if you were happy to send it by PM. I'm looking at options at the moment, and it's a little overwhelming.

Your advice about mental and physical health is really on point. I have asked work for an Occupational health referral, and will take some time out to process, rest and be as healthy as can be.

I'm so pleased you had a positive outcome. It's nice to hear good news!! I hope you enjoy every minute of it, and update us when the twins arrive, if you have a minute 😁❤️.

[Blueberry211]

Sending you lots of support. Had just had my first failed transfer and I am devastated.

I hope you find the answers you deserve. Best of luck xxx

[Astride0 in reply to Blueberry211]

Hi Blueberry, thank you and I'm sorry. You are in the right place. When I started I was given the following advice. Talk about IVF with some people you trust, and be your own advocate. I'm passing it on as it has helped me.

The hardest thing I did recently was to tell work. It wasn't easy, but it was part of getting support. Look after yourself. xxx

[Hopecontinues]

Hi,So sorry to hear about your third BFN, it's devastating. After 2 BFNs I opted for a hysteroscopy which checks the uterus for obstructions. I have fibroids so it was easy to get this. Anyway, they found that I had a subseptate uterus which was probably preventing implantation, so I had it removed. They also did a bioma test to make sure the culture of the uterus was ok.

Prednisolone has been given to me on a low dose, but I didn't have the test for nk cells. It does lower your immune system, so I'm wearing my mask everywhere.

I hope you find your answers.

Good luck

X

[Astride0 in reply to Hopecontinues]

Hi Hope, thank you for sharing. I wondered about checking for endometrium receptivity and infections too. There are so many possibilities, it's like looking for a needle in a haystack isn't it?

Can I ask what your prednisolone was prescribed for? There seem to be different approaches to prescribing it.

My hycosy was inconclusive, and a year ago I was given the option between going straight to IVF or doing a laparoscopy. IVF was recommended. I'm now kicking myself for not asking if I could be put on the one year waiting list for a laparoscopy while starting IVF. I plan to contact the NHS to ask if I can be put on the list, as blocked tubes can prevent implantation.

Thank you for your help. Good luck and I hope your investigations bear fruit. X

[Hopecontinues in reply to Astride0]

Hi,I went abroad as they just add more as standard and move quicker. The prednisolone is prescribed as standard there.

It is a nightmare, because maybe everything is ok and the next transfer will work but you don't know.

I hope you find your answer.

X

[Srh91 in reply to Hopecontinues]

Hello Hopecontinues where abroad did you do your investigation ? Xxx

[Astride0 in reply to Hopecontinues]

Thank you. How interesting that they prescribe it as standard. I can't decide if it's good or bad, but it is definitely handy.

After 3 failures the likelihood is that there is something there worth investigating.

If things don't work for us, I'll be in peace with myself that we've tried all the avenues. Good luck with your trip, I hope you're making a holiday out of it 🙂Xx

[Hanj10]

After 5 early miscarriages and 1 failed FET my clinic did immune testing of TH1:TH2 ratio which came back high so they prescribed steroids. This was back in March this year and it worked I’m 37 weeks now. I had also previously done the uterine nk testing at Coventry which was normal overall (one high biopsy and one lower). I did the endometrial scratch too for FET as that can help with the NK cells. I did loads of private blood tests through medichecks for various autoimmune things like ANA which came back normal. With your ANA result I think you really need to find a clinic that will prescribe steroids. Good luck x

[Astride0 in reply to Hanj10]

Aw congratulations! This is awesome news.Are TH1 and 2 Cytokines? It's very good to hear steroids worked. It sounds like my ANA is borderline so I'm not sure it will warrant steroids. Regardless I need to find a clinic who will accept to test and prescribe them if needed. Would you mind sharing by PM who you were with, so I can look them up? X

[Millbanks]

Hi lovely, I had 5 failed FETs then for our 6th took prednisolone and had instralipids, am currently 21 weeks pregnant. I say go for it!! Xx

[Astride0 in reply to Millbanks]

Thank you for your message of hope, and sharing your happy news. I hope all goes well! Give us a waive when you give birth, we need all the positivity. Xxx

[Millbanks in reply to Astride0]

Thank you lovely!! I will indeed xxx

[Roxylife]

I’m so sorry to hear this hun and sending you loads of love at this time xxxxxxxx

[Astride0 in reply to Roxylife]

Thank you for your kind words. Xxx

[Astride0]

I wanted to thank you all for being amazing inspiring people, and for your advice and support ❤️. Today I called the hospital to get on the waiting list for a laparoscopy, booked a GP appointment to get a referral to Coventry, contacted a clinic for immune investigations, and booked two counselling sessions 😅. I would have never picked myself this quickly if it wasn't for you, and most importantly would have had little to no clue what to do! Xxx