# Should I delay my FET to get immune testing?



## Erin4 (Feb 9, 2014)

Hi Ladies,

I'm looking for some advice as I can't decide what to do! My fresh cycle ended in freezing 4 embryos as I had moderate OHSS, since then I have had 2 FETs, one chemical and one bfn. I am now due to start my next fet this time transferring two and having the endo scratch. I had a niggling thought that I might have immune issues, so I asked my gp to do level 1 immune testing. She agreed but didn't know what they were! So I gave her a list and she did as many as she could order at that surgery. I hoped that I was just worrying about nothing  and the results would come back as normal! However it came back that I was positive for anti-nuclear antibodies, 1/160 fine speckled. So points that I have an auto immune problem. I have an appointment with Dr G at FGA on 27th July, as I wanted to discuss this result and possibly do level 2 tests. However I'm due to start DR on Wednesday! What do I do?! Do I delay this cycle?! I don't like that idea! Will I have time to have any immune testing and treatment before my ET on 26th august. Or should I see how this cycle goes without immune treatment and have the results ready in case I need to do another cycle?!

Sorry for the long message! I have so many conflicting and confusing thoughts going on in my head, and would really appreciate any opinions.

X


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## KateMart (Jul 14, 2014)

Hi Erin,

Sorry to hear about the BFN. Hope you got some advice in the end, but if not maybe I can help. It does depend on the doc but most immune treatment seems to be on day 7 or ET so you will hopefully still be on time?

I would think about delaying it if not. I had immune tests this time just before the cycle, but don't think I found the real issue. Blood test showed borderline high NKs, and I had intralipids, scratch and two put back but BFN and I have only 1 frostie left. I see your appointment with Dr G was today though! I'm sure he was able to give good advice xx


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## Erin4 (Feb 9, 2014)

Hi Kate, 

So sorry to hear about your BFN too. Are you going to have more tests done before your next FET? Dr G suggested I had NK test and TH1/TH2 and KIR genotyping. Also having 18 in 1 and hidden C test. He is confident that all the results will be back in time for me to start immune treatment, but I won't be able to relax until I start! As ET in 4 weeks today! I have decided in this cycle fails I will be leaving WN as they said they wouldn't do anything different for my next fresh cycle! They have given me the endo scratch this time but only because I asked for it. I haven't told them I am seeing Dr G. My current stress is I can't collect my sample for 18 in 1 and hidden C as I have such a light cycle!  

I read that you are leaving WN due to moving house, good luck moving house   have you decided on a clinic to move to and do they do immune treatment? xx


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## KateMart (Jul 14, 2014)

Hey Erin,

Sounds like your appointment was really successful! What is KIR genotyping? I have had the other tests you mention but not that one! Don't worry about the sample they only need the smallest bit! And then it's mixed with saline, you could even swab yourself as that's pretty much what I did. Do you go to Dr G for that test? I went direct with Serum in Greece.  

Don't blame you for leaving. Their attitude seems to be to keep doing the same thing over and over and eventually it will work. That approach seems slapdash to me and there is no monitoring. You are wise not to tell them about Dr G, you probably saw on the thread I was shouted at straight after my scratch by a senior nurse for getting immunes tested. Not ideal. 

Think we will go to the lister for the FET but not sure if we can yet as they have to be compatible in terms of freezing method and device. I really hope we do t have to go back there!

How are you feeling about it all? It sounds like immunes is the way forward, I am really glad I did it and wish you all the best for this FET, really hope it's the one for you! Xx


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## Erin4 (Feb 9, 2014)

KIRs - killer cell immunoglobulin-like receptors, they are a family of protein receptors on the surface of NK cells, mostly inhibitory but some activating. There is an increased risk of implantation failure and/or miscarriage if particular members of the activating a KIRs are missing. The treatment is Neupogen.

I had read Dr Beers books in depth before the appointment so understood a bit of Dr G explanation but poor DH looked terrified!

My last FET cycle was horrible, and had a nurse tell me it will probably be cancelled and when I got upset she told me it's something I should expect and got no sympathy! I ended up Down regging for 5 weeks! Due to AF not coming, a cyst, and then I had to stay on progynova for an extra week due to thin lining! Never had either of those problems before and got no support from WN. So spent the whole very long cycle stressed so wasn't surprised when it failed.

I can't believe how you got treated my that nurse, absolute shocking and out of order. I hope you have put in a complaint!

I started to feel really positive about getting immune testing and possible treatment done, and Dr G helped with that my saying that it will definitely improve my chances. Just terrified of how I will cope if I have to go through another fresh cycle if it doesn't work, as I had moderate OHSS last time. And will prob need more immune testing such as LAD and DQ alpha. So obviously freaking out about all the potential costs! These current tests cost us about £1500 and then I will have to pay for treatment! Did hidden c through dr g, although it is being sent to Greece. I know it would have been cheaper but I went for ease if doing it all from one place, to reduce my stress levels! I had such stress getting my level 1 test, gp was amazing and requested the bloods, but one hospital refused to do them! And the other hospital refused to do all of them as they said they were not justified so had to get gp to fight for them!

I hope you have an easy transition to the lister and they can take your frostie. And I hope so much it works out for you too! I read you are losing your funding due to your move   the post code lottery make me so mad!

X


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## KateMart (Jul 14, 2014)

Thanks for the explanation on the KIRs! I read some Alan Beer, specifically the NK cells bit but my DH was also petrified when we went to our consultation. We spent about £1.2k in tests and consultation and went to the lister rather than Dr G to keep costs down. But I reckon it ended up about the same, I paid another £200 for hidden C,  and intralipids were expensive at £500, not cheap but worth it to get the right treatment. 

I'm so sorry to hear about your FET. Five weeks of DR that's hideous! Was it soon after your MC? sometimes it can take a while to ovulate again, or maybe you didn't get rid of everything? The lack of support there is terrible I agree. The nurse who shouted at me after the uncomfortable procedure was the top one there and she Was doing it because the consultant who was doing the scratch had read my notes and was angry I was getting g immunes somewhere else, even though my consultant had recommended it! It was all about his ego, I was told he was the head of the clinic so given the impression it would be no use complaining. I was in tears in the meeting, DH was furious, especially given the timing. 

What a nightmare with immunes! Is your doc in Woking? I told mine I'd had two MCs (had another about eight years ago with different partner) and she was fine about it, but think she wrote three on my form for the labs. It's good they forced yours since they came up with a problem.  How do they treat it?

It is such a postcode lottery but I am glad the choice was taken out of our hands. It got to the point where I was anxious before each appointment that I would run into that nurse and be questioned and shouted at. The only downside is we need to wait a year or so. But in a way that's good, I know I'm not that young (35 in October!) but need to think about contingency plans, whether to do another full cycle or think about adoption. 

Wish you lots of luck. Let me know what happens with Dr G and your cycle! Sorry for the essay! Xx


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