Hi all. I hope everyone is doing OK. I wondered if someone could recommend a specialist/clinic by PM or any success stories just using intralipids. I've got 6 autoimmune diseases. The worst being chronic bladder inflammation caused by IC. My last miscarriage (DE) were perfectly healthy twins. All our bloods are normal, karyotype, blood clotting etc. My immune bloods show elevated NK cells. My NK biopsy was invalid due to not enough cells. My clinic in Czech Republic are suggesting intralipids but refusing a steroid despite this MC that shouldn't have happened. The only tests I've not had yet are EMMA/ALICE. Had a very disappointing experience with Dr Gorgy (for a second opinion) Just suggesting stuff we can't afford and very rude attitude, wouldn't even answer my questions about whether he could prescribe steroids. It looks like I have to go through another MC to prove I need more specialist help. (I am under an immunologist at my clinic) So anxious it's affecting my physical health now. I am petrified about Feb embryo transfer. I've already challenged clinics decision in writing and been turned down again for prednisolone. Any tips would be hugely appreciated! Thanks for reading this. X (I am 42, 43 this July)
Refused steroids.any luck with just i... - Fertility Network UK
Refused steroids.any luck with just intralipids anyone?At my wits end and anxiety about more miscarriages is off the scale!
I am sorry you’re in this position. Professors Quenby and Brosens at Warwick uni may be worth seeing. They do the NK endometrial biopsy at cost only as part of NHS/Tommy’s research clinic. I was recommended pred based on this and if I’d had difficulty getting clinic or GP to prescribe I could have got it off them direct.
Hi. Thanks so much for your message and advice. I've written to my GP to ask him to refer me. I phoned Dr Quenbys secretary and she said its a 20 week waiting list once referred. I am hoping I won't have another MC but if I do I hope to be able to access this clinic under the NHS are we are struggling to finance this! 🙏thank you so much for taking the time to read my post and reply.
hi, I recently had a call with Dr Lamiya at Nova fertility & she has done a private prescription which includes steroids. Obviously this is all private so self funding, including the prescription, however she is very very knowledgeable and I think you could quite easily get the steroids & reassurance you need if you schedule a call with her x
This is really helpful. Thank you so much for the recommendation. 😊👍x
Did she expect you to have more blood tests and biopsies? I've had a full immune blood screening plus invalid NK biopsy, scans, hysteroscopy etc.
Hi, no so I have a child via IVF already but since then I’ve had 3 miscarriages in a row. I have not had any immune testing but I wanted to look into it, but she explained that sometimes they don’t flag etc so she prescribes to cover all basis. Like I said she was very knowledgeable and I’ve no doubt if you explain your circumstances she would be very open to doing you a private prescription x
I am sorry to hear you've had 3 miscarriages. She sounds brilliant. I've emailed the administrator Barbara to request a virtual/Telephone app with Dr Lamiya. Massive thank you for your suggestions and advice. Have a fab Christmas 🎄 when it arrives. X
So frustrating to read this. Prednisone is so cheap and my clinic prescribed even without any tests to say it was needed. It’s also prescribed for skin conditions. I’m not saying you should go against your clinic and self prescribe but….
I just can't understand why my clinic in the Czech Republic are being so rigid!! They also seem to forget my age. By the time I have my transfer it will be 6 months since my MC surgery because it's had such a knock on effect. I just keep getting ill with UTIs etc cause I am so anxious and run down. Thank you for your reply.x
There are other drs you can try. With 6 autoimmune issues you def need something stronger. Intralipids are questionable and can make things worse for some- it didnt help me at all, i had success without it. Plus you mentioned twins, not sure if you transfered two embryos but in your case I wouldnt transfer more than one at any time as it can make immune reaction stronger. I hope you will get success.
Yes we will have to try another doctor because Dr Gorgy only wants wealthy clients and totally refused to even answer my questions about steroids and wanted £4,000 plus worth of tests. We only got 1 embryo which split so we've had to borrow money and start with a new egg donor. Thanks for reading my post and replying.
Sorry to learn you are finding it so difficult to get answers - the immunity side of things seems super complicated. I think you are totally making the right choice in staying away from FGA and the doctor you have mentioned though. I have had the misfortune of having a little bit of immune treatment there and felt so uncared for as a patient - nothing explained, the doctor yawns during all consultation, never reads your notes and they literally only seem to care about lining their pockets. I sought advice from Dr Thum at the Lister and although I didn't go there in the end that was to do with personal circumstance and nothing at all to do with Dr Thum who I thought seemed excellent x x
That's really helpful thank you so much for the recommendation. I couldn't believe how rude he was to me and my husband. He also hadn't read any of the notes I spent hours putting together. I've got so many tests results. Omg he was yawning the whole way through it and was in a foul mood!! X
Sorry Skittles11 would you mind if I sent you a message?
Hi, yes of course, that's fine 🙂
my clinic didn’t do the Emma Alice test so I googled and researched on here and online to see what the meds were given for those test results. Basically from my research I begged for the steroids (during Covid so they didn’t wanna give them out and I’ll send you privately my clinic name) and I added liquid probiotics every day. I’ll send you the ones I took. Also a canestan pessary one week before transfer. The clinic didn’t tell me re the probiotics or pessary I just took the decision to do so after lots of research
I have several autoimmune diseases too so I was adamant I knew what I needed. As soon as I added these I had my first successful transfer and my beautiful baby daughter. I believe they helped/worked, it’s worth a go at least and will make you feel more in control. Lastly add some massages in to help you relax mentally plus it’s nice to have a treat amongst it all
Hope that helps. Ask me anything else if you want/need to xx
Thank you so much for all your helpful tips and advice. It sounds really good. I really appreciate you and everyone else taking the time to reply. I am banging my head against a brick wall with my clinic. It's their immunologist that's saying no and I just don't understand why. Xx
Hi,
I would suggest a private prescription too. I’ve been under Dr Lamiya at the miscarriage dept of St Mary’s (I’ve had 8 miscarriages). I had a telephone call with Dr Quenby a few weeks ago and her solution was to say I should think about drawing a line under it all as it’s quite sad to have had 8 miscarriages. I have no known autoimmune conditions, unexplained infertility, nobody can tell me why so many miscarriages as tests comeback fine. So I’d be grateful if you could message me which autoimmune conditions you have so I can rule them out with me. I do feel like my body rejects the embryo when I get to 7 weeks. At my wits end about what else I can do. I’ve tried prednisolone, but haven’t tried intralipids so that’s the next plan hopefully. Hope you manage to get there too.
I am so sorry to hear you've had 8 miscarriages. That's absolutely heartbreaking. I am very surprised that Dr Quenby said that. Surely it's a case of getting the right meds if everything else has been ruled out. I've got dermatitis, psoriasis, eczema, interstital cystitis, asthma, hayfever and a question mark over gluten intolerance. Yes maybe try the intralipids alongside steroids. Let me know how you get on with it all. Mine are also very early losses so I don't think my immune system allows much development at all. Good luck with it all and let me know if you ever want to chat. I know how tough and frustrating it can be just trying to get the right help. I can't understand why having a baby can be this hard and also so expensive! I am determined not to give up and if I were you I wouldn't take that on board what Quenby said. You deserve to have a child and just need the right medication. Big hugs 🫂 xx
Thank you for the kind words, feel free to message me if you want to talk at all too. Dr Quenby did surprise me, I spoke to her a few years when I’d had a few miscarriages and she said I could have the NK test but because I was already on steroids, there was no point. I am going to ignore what she said, but honestly I was left very underwhelmed after the latest phone call. Especially as I was suggesting what I should do next and which medication to take. Never thought it would be this hard to have a child, but I’m 40 now so I suppose at some point I do need to think about when to draw a line under it all. Just not ready to yet. Good luck with everything - I hope it all works out for you too.
Your welcome. Yes I will do. That would be nice as I don't know (in person) anyone going through IVF or miscarriages so it helps to talk to women who understand. Yes I think you should ignore her and get an NK biopsy elsewhere and see what the results are. You might need different drugs to what you've tried. Don't give up. Lots of us are over 40. At this rate I'll be 45 before I give birth or older!🤣I might also try acupuncture this time, even if it just helps me relax. Good luck and let me know how you get on.🙏xx
hi I'm sorry for the miscarriages I've been there too. I had to move clinic away from intralipids and steroids which did nothing for me. I moved to a London based clinic and had the era Alice and Emma test done. From that we used pgs embryos and have a protocol of steroids and IVIG which is stronger than intralipids. Maybe worth not transferring any embryos ( precious) until you have had the Emma Alice and era ? X good luck and best wishes xx
Thanks so much for your message. That does sound sensible. I just find it all so confusing because I have asked the clinic about EMMA/ALICE and they don't think it's necessary just yet but I am considering next steps. We've luckily now got 4 embryos frozen from our recent donor egg round. Dr Gorgy did give me a tip about vaginal probiotics, which the EMMA one tests for. I am only taking oral so will buy some. I do think the ALICE test could be helpful for ruling in/out chronic endometritis. I might go ahead if I can at least try steroids with intralipids. We can't afford IVIG so I am praying 🙏 we get success other ways. I hope things are going better with your fertility journey now you've got a new treatment plan. Many thanks for reaching out. X
I'm so sorry your clinic is not helping you with this, it's often first line treatment for high NK cells and if that doesn't help intralipids. I don't know which clinic you go to in Czech Republic or whether you're considering changing but I know Reprofit has live birth guarantee and I know many people happy with them. I know people who have gone to Olomouc and Gennet have been given immune protocoles with steroids too. I hope this helps, hope you can avoid any more miscarriages.
Thanks so much for your message. I am under Reprofit who have been great with everything else. They are using an immunologist through GENNET in Prague and it's them saying no to steroids. I don't think my consultant wants to override this decision as she's said no too even though she has the ability to prescribe them. I've never even met this immunologist and I am finding it frustrating but also heart breaking as I can see myself losing a 5th baby. I will wait till my bloods from Dr Gorgy come back and will push again with Reprofit. Thank you for your message x
Thank you to all you lovely ladies for taking the time to read my long post! And also for all your helpful tips and recommendations. I've got a lot to process and then decide on the next steps. Sending you all baby dust and luck with whatever stage 💗 of the journey your on. This is such a tough journey but I still believe there's light at the end of tunnel xx ✨️ have a relaxing Christmas 🎄 all of you and here's to success, health and happiness in 2025!!!
Intralipids / miscarriages 
Anyone know much about NK Cells?
To intralipid or not to intralipid??
Does anyone do intralipids the day of transfer?
