Reproductive immunologists & killer c... - Fertility Network UK

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Reproductive immunologists & killer cells

Flora14 profile image
20 Replies

Hi everyone.

I was wondering if anyone on here had seen a reproductive immunologists? And who you saw and how much consultation costs? And cost of any subsequent tests?

If you are happy to share also wondered what tests they did on you?

Trying to work out if it's worth seeing one and how much it will cost.

37 4 failed ivfs unexplained fertility and never any pregnancies😥

Thank you

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Flora14 profile image
Flora14
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20 Replies
st1984 profile image
st1984

I haven't seen a specialist reproductive immunologist but i was investigated for this by my clinic. I had Chicago bloods (expensive but worth it for us) which showed high NK cells. Steroids were added to my protocol (along with injectible progesterone and low dose thyroxine for a slight thyroid issue) and im now 13 weeks pregnant. Don't give up, sometimes little tweaks to protocols make big differences. Im 36 and this is my first baby after 6 fresh cycles and 3 losses. Could you see if your clinic could do any of the initial testing? I also had 2 lipid infusions but they wouldn't do the next 2 due to covid and risk of immunosuppression. I did persuade them to let me carry on steroids, which they did if i stay in the house. Im just reducing those now

Good luck

xx

Flora14 profile image
Flora14 in reply tost1984

I did ask if I could have steroids just in case I have killer cells as I have heard that some clinics or do this on the protocol regardless but my consultant won't do it without evidence for it which means I'm going to have to spend thousands getting these tests done in order to try it which really frustrates me as I've been on steroids numerous times over my life due to asthma so I know I won't react badly to it or anything but they won't do it.even if I get the evidence I'm not sure he will be convinced. Thank you I feel like giving up sometimes as never even managed to get pregnant so I don't even know that I can😥

Flora14 profile image
Flora14 in reply tost1984

How much did you pay for them?and what clinic did you go?was it just killer cells or other stuff too? Thanks x

st1984 profile image
st1984 in reply toFlora14

They test for NK cells and something else (can't remember exactly what think something like TH1:TH2 ?)my NK cells were slightly raised and the ratio was back to front he said (the part that should be lower was higher). I think it cost us £1000. I asked the same about taking the steroids without confirmation but my clinic wouldn't either. Which is really annoying, £1k is a lot of money when you're already paying for everything else.

Obviously for me it was worth it and actually i wish we had done it earlier, as any cycles you pay for are technically going to be wasted if there is an underlying immune issue as its never going to work unless you treat it. That's how i looked at it anyway to try and some how justify the cost 🙄

Are there any other clinics near you? You could maybe enquire as like you i definitely read some people having steroids without the test...

Flora14 profile image
Flora14 in reply tost1984

Tell me about it.lol.they think we've got money to piss away!we are 10 grand down and nothing to show for it.from what I've seen in other groups it tends to be the clinics in London that give steroids without testing for killer cells.I am in Devon and Plymouth and Exeter won't give them and we have now gone to Bristol for various reasons but he also won't do it.I do think of self medicating as you can buy them in chemists in Europe apparently!lol.think is I know what I'm like even if tests come back saying don't need them I'll still want to try just in case lol x

MrsWright87 profile image
MrsWright87

Have you considered PGD testing? This is also recommended for multiple failed ivf cycles x

Flora14 profile image
Flora14 in reply toMrsWright87

Yes I'm looking into this now and seriously considering it .the whole field of it is quite controversial but in my age range they do actually find that it can help I wouldn't do it if I was much younger though. it's only because of my age and amount of failure as I've had that I'm considering it.have you done it?x

MrsWright87 profile image
MrsWright87 in reply toFlora14

We are moving from NHS treatment to private treatment because we have the option to get a PGD test done. Apparently most embryos aren't chromosomely sound so won't implant, even when they are high grade eggs etc. The test isn't for deciding gender or anything, it's only to confirm the likelyhood that implantation will occur.

There is only one clinic here in Ireland that will do the testing. We are also considering culturing to blastocyst stage and using care map technology also xx

Flora14 profile image
Flora14 in reply toMrsWright87

Yeah I'm leaning towards doingit.just so expensive though.think it will be about 4000 on top of a cycle!what's the care map technology?x

Suzannah1985 profile image
Suzannah1985

I also didn’t see a reproductive immunologist, as my clinic covered this off, but on their recommendation after 3 fresh rounds and 2 FETS of which 4 failed and I had 1 loss I had the Chicago blood tests. I was already on steroids and blood thinners but had intralipid infusions added after the tests showed some issues with raised antibodies. It wasn’t a massive surprise as I have autoimmune thyroid disease, but without the blood tests they wouldn’t add the intralipid infusions as they needed evidence that it was required.

It was worth it all though as our round following the blood tests was successful and I now have my little boy, who is 13 weeks old.

I would suggest a good start might be getting your thyroid levels checked, if your clinic or gp won’t do the tests for you, then you can order them privately through medichecks.

Good luck x

Lilly12255 profile image
Lilly12255 in reply toSuzannah1985

Hi, I was reading your reply. I am also already on steroids. I al therefore wondering whether the tests are going to be biased if I do them as I already have immunosuppressant? How did your clinic ho about it? How much are the Chicago tests? Thanks x

Flora14 profile image
Flora14 in reply toSuzannah1985

All thyroid are ok.it's under 2.5 and anti bodies ok too.

How much did you pay for tests and where did you go?was it just killer cells or other stuff too as you mention raised antibodies? Thanks x

Suzannah1985 profile image
Suzannah1985 in reply toSuzannah1985

The Chicago Tests were about £1500 from memory but I guess it will vary depending where you get them, I think there are independent places you can get them done, but I got mine through my clinic.

WeeJacs profile image
WeeJacs

Hi F I’m also interested in this, I’ve had 3 fresh attempts with 2 miscarriage plus 2 BFN’s 1 3BC left in the freezer. I have endometriosis, we’ve had quite a lot to tests already, we were lucky as our nhs clinic ran karotype etc but now thinking of having these tests done too. Our private clinic doesn’t do them, so we’ll prob need to go elsewhere in the uk as we’re in Scotland. Want to throw everything at this before our last frostie. I can recommend ‘is my body baby friendly’ by dr beer xx

Flora14 profile image
Flora14 in reply toWeeJacs

Yeah I have just bought this book.most of the places that do the killer cell tests are in London I think.wish I lived in Scotland.you get 3 free rounds of ivf don't you lol we actually considered moving there😂 would've saved us 10 grand😏x

MrsWright87 profile image
MrsWright87 in reply toFlora14

Flora14 where are you based? X

Flora14 profile image
Flora14 in reply toMrsWright87

Devon x

WeeJacs profile image
WeeJacs in reply toFlora14

Only if your a new referral. I was already in the system so I only got 2 attempts. We are looking into clinics in London for testing xxx

Ropa19 profile image
Ropa19

We had NK cells tests done in Warwickshire (think it was connected to the uni) and it’s was like a scratch as our consultant recommended them rather than the bloods as he said they are taking the sample directly from the lining. We had to go on a certain day in my cycle (think it was day 21) for 2 months in a row and was about £350 so much cheaper than the bloods but I think they test for other things with the bloods and this was just NK Cells x

Flora14 profile image
Flora14 in reply toRopa19

Yeah it's a bit of a nightmare about killer cells different consultants say different things some say you can find out if you've got them by the blood test and then others say you need to have the biopsy although they say that can change every month.can't win.how we supposed to know which is best way😏x

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