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Re: Immune issues and infertility

7/17/2010 12:29:03 AM

Caitriona

93 posts

Re: Immune issues and infertility

First off, M, I'm really sorry to see you've had four failed IVF cycles. That is devastating, and draining on so many levels. I can see why you'd be investigating other avenues with such a history. It's incredibly frustrating to feel you're banging your head against a wall and not getting any answers.

To give you details of the clinic I attend in Nottingham, it's one of the CARE clinics (google carefertility) and the consultant's name is George Ndukwe. IMO, he's brilliant and a leader in the field of reproductive immunotherapy and IVF. He treats many couples with repeated IVF implantation failure and also repeated miscarriage.

You do need a referral from your GP (or a consultant) to make an initial appt with GN. Your first step would be to phone the clinic and they'll explain the steps you need to take, if you're interested in going to see him. When I started with him in 2007, the sequence was, you send a letter explaining your history in brief, and also a GP referral letter. Then GN reviews this and (presumably) agrees to take you on and at that point they send you a detailed questionnaire that you fill in and return and then you're given an appt date. It's around 8-10 weeks' wait for that initial appt but it helps speed things up if you also make appts to have your bloods done while you're over seeing GN, and also make a follow up appt for about three weeks after that again to get the results and discuss a way forward.

I could be wrong, but my information is that the testing done by the clinic in Notts is still more comprehensive than anything that is currently available in Ireland. My husband and I were very impressed by the analysis we were given of our results and the way in which our treatment plan was tailored to our very specific results. Of course, we are also impressed by the fact that we had success with this clinic after five failed cycles in Ireland (and we have just had good news on a subsequent cycle, so I think it is more than just coincidence). I know there is a large hassle factor to attending a clinic in another country but I would heartily recommend this particular clinic as being professional and comprehensive in their approach to treating couples who have experienced multiple IVF failure.

As for practical details - the clinic is located just off Junction 26 on the M1 and Ryanair fly to East Midlands airport which is about 25 miles away. You can hire a car there or catch a taxi to the clinic. It's possible to attend for an appt on a daytrip but if you're staying over, there's a Premier Inn a few miles away and a lovely hotel within walking distance of the clinic called the Nottingham Bellfry.

If there's anything else I can help you with, please just say! I hope that much helps with the decisions you're making at the moment.

Oh - and if you haven't got hold of 'Is Your Body Baby-Friendly?' by Dr Alan Beer, I recommend that you do so. It's easily available on amazon and play.com. It's the definitive guide to this whole field - a dense read but one that made lots of alarm bells ring in my head and set us on the road to answers.

Good luck, M... xx

9/24/2010 11:45:47 PM

Gingernutter

1 posts

Re: Immune issues and infertility

Hi Caitriona,

I've been reading through your posts on Care Nottingham. I've done 2 failed ICSI cycles in Sims and am looking abroad now for more answers. I'm very interesting in attending GN in Notts. Can i ask you did you stay over there for the full cycle or can you have scans in dublin and only go over closer to the time of EC? Also, can you claim tax back on the med1 for the Care Clinic? I cant find them listed on the revenue website. Also, have you any idea how much the full cost of the autoimmune bloods are in Care? I know in sims its 1k for the chicago bloods so i'm wondering should i get them done here (as it might be cheaper) and then see if there is anything further George might test me for?

Thanks a mill

10/2/2010 11:27:47 PM

Caitriona

93 posts

Re: Immune issues and infertility

Goodness, gingernutter, i'm sorry I'm only replying to you now. Haven't been online much in the past wee while and we've had some internet issues too. Anyway, first off, can I just say how sorry I am that you've had two failed cycles. That is really tough. It takes a fair bit to be able to dust yourself off after that and look elsewhere for some answers, so fair play to your partner and you.

To answer your specific questions - as regards staying over in Notts, what I did was that I had my baseline scan and bloods here in Ireland after 2w of down regulating and results were faxed over to Notts. They then gave me the go-ahead for stims and at that point I booked to travel over to Notts to attend for a Day 6 scan. Usually it's Day 8, but they wanted me over early as I have a tendency to overstim. I stayed over from that point onwards. They scanned me every second day so it's not really practical to travel back and forth at that stage. Also, they need your partner there on Day 8, I think it is, for you both to sign consent forms in their presence. My DH left Notts after that and only returned the night before EC as obviously he was required to be there the day of EC. How long you stay over will also depend on whether you're going for 3 day or 5 day transfer.

Having said all that, I do have a friend who cycled with Notts and she did have some more of her scans done here in Ireland. I think they flew over for the Day 8 scan and then they flew back again a day or two before EC. But this was not their first cycle with Notts and also she tended to have a slow response to stims, so there was more time to play with, if you know what I mean.

Re Med 1, I have claimed ......... and I will defend that decision if queried as the treatment was not available here in Ireland.

As for cost of Ai bloods - I honestly don't know what this is by now - but it'll be more than the 1k you're quoting from s*ms. It's not just Chicago bloods that Notts do, mind. There's a series of bloods that get tested in London too. I have a notion that when we got our testing done it was in the region of st£1,500 (but that may also have included the consult fee which I see from the Care website is now £230 for new patient immunology consult). That was in late 2007. But you can easily find out the cost by phoning them - I'm sure they'll be able to tell you right away. As for getting some of the testing done here ... to be honest with you, I'd just go with what Notts say you need to have done. We did have a rake of testing done here in Ireland before attending Notts (including an AI profile and the full whack of repeat miscarriage testing) but when I gave the results to George, he found them useful to a point but explained that the testing they do is more comprehensive and would give him the full picture - so I ended up having a pile of things repeated (and paying twice!). For example, one test I had done here was for Natural Killer cells. The test said that my NK level was within normal levels but George said he also needed to check the NK activity level ... and sure enough, that turned out to be elevated. So the results I had from clinics and hospitals here in Ireland did not give the full picture.

It might be worth getting an exact list from S*ms as to what they test for and checking with Notts is it useful to them for you to have that amount of information prior to seeing George. Or maybe Notts (not to mention S*ms) would not be happy with that approach!

If I can help with any other questions, GN, please let me know. I do wish you luck with your decisions. It is not easy!

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