Immunology alongside nhs cycle at unsupportive clinic

[geeup]

Hello. Am reaching the very end of my tether and am desperate. I've had three IVF cycle failures with perfect blastocyst embryos, perfect linings etc.
Having recently read Alan Beer's "is your body Baby Friendly" book, I want to get tested for immune system issues as I tick a lot of the boxes suggesting issues. However, I have one nhs FET cycle left (2 frozen embies) with a clinic who are very clear they DO NOT agree with any immunology testing or medication like IVIgs. I don't want to lose my last cycle but don't want to just do it all again if my body just kills off anything put inside it - not least as it'll waste my last 2 embryos I worked very hard to create and in the second half of my 30s, I'm not getting any younger. Has anyone used immunology medication without telling their NHS clinic? Did it work? Is it even feasible? Would an immunology specialist even let me? Thank you. I'm totally at my wits end. Help me please.

Bumping for weekday traffic if poss. Thank you!

Hi @geeup I don't have much to add I'm afraid. But I was reading NICE guidelines on IVF and they don't support the immunology stuff as there isn't much evidence behind it (according to the guidelines) so if it's an NHS clinic they're hands are somewhat tied in supporting you in it at all. I expect you'll have to make a decision either to stick NHS or go entirely down the other route x

Ah that's interesting. Thanks for letting me know that. It's so difficult as I don't want to lose my last round but I want to throw everything at it!!

Hi gee, sosorry to hear your last FET definitely hasn’t worked.

In case it’s helpful, a good friend of mine who could get pregnant without difficulties but had recurrent miscarriages went to Zita West. They identified a couple of issues (immunes and a clotting problem) and were happy to just provide treatment for those issues once she got pregnant again (ie she didn’t have to do IVF as well). So they might be willing to treat you alongside your NHS cycle? I agree it’s hard to know whether to give immunes treatment a shot when there are contradictory views about it, but we are in a similar position to you and like you have just decided to try everything!

Hi Gee I’m also sorry to hear your FET didn’t work, i hope you are ok?

I myself am a little sceptical about the whole immunes thing, I know they’re dr’s who practice it but as hoping said above the NHS won’t entertain it. I currently receive nhs ivf treatment at a private clinic and even that private clinic won’t carry out tests as the evidence that it might have an impact is limited. Even after my 3 miscarriages now they don’t agree to it.

I think it’s on the NICE website they have a list of ivf extras/add ons and rate them with a traffic light system. I don’t know at what stage your frosty was when it was transferred back but Would your clinic consider assisted hatching and embryo glue?

I wish you all the best of luck

Are you in London? I think Dr Gorgy does this...pop over to the fertility friend board and there is a Gorgy thread. Someone on there will give you an exact answer.
Good luck I hope you get success soon.

@geeup - I'm sorry I don't have anything helpful but just wanted to say I've been thinking of you and I'm so sorry it didn't work this time .
I don't know if it's an option for you, but can you change clinic to one that will provide the immunes? You can transfer your frozen embryos to another clinic? X

Sorry your FET didn't work, Geeup.

The NHS have a clinic at Coventry University Hospital specialising in immune issues - details here: www.uhcw.nhs.uk/miscarriage/nk-cells-testing-clinic

You can self-refer - they don't prescribe the really heavy stuff like Humira/IVIG, only steroids, blood thinners and so on, but they're meant to be very good. They'll do a womb biopsy and check for NK cells. It's about £500 - not cheap, but cheap by immune treatment standards!! Otherwise, there's a clinic in Epsom which I think will treat you during an NHS cycle (www.miscarriageclinic.co.uk/), and dr Gorgy in London, who will definitely do it. Have a look at the immunes section of Fertility Friends, if you haven't already, there's loads of information there. And best of luck.

Thanks so much @Pognut looking into that this evening!!

Hi Geeup, I was in a similar situation with not implanting and took matters into my own hands. I mentioned my immunology treatment to the NHS nurse and she was not phased. Didn't care one way or the other.
I had my tests done by Locus Medicus in Greece (bloods taken by a local private clinic for about £50 per person) - absolutely loads tested for < £600, which worked out cheaper than Zita West, etc. Intralipid infusions can be done privately at the Oaks Clinic in Essex for £150 (at time of writing).
Now I am pregnant for the first time in 5 years! Not sure how much evidence the NHS needs but I will be writing to them asking them to add as a standard test on their pathway, save so much trouble and expense.