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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

Immune tests ivf

28 replies

roastednut · 15/10/2013 21:31

Does anyone know anything about these or had them done? Dh and me went for a consultation at care manchester for a funded cycle of icsi and the doc spent most of the consultation time talking about these tests which are approx 2 grand! Would love to hear any views on this, we had ivf last year which resulted in mmc Sad

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ohfourfoxache · 16/10/2013 11:14

Firstly, how many miscarriages have you had? (This is crucial in terms of deciding next steps and whether extra tests are necessary or appropriate)

TBH I wouldn't trust ANY clinic that pressurises you to pay for treatment before/during/after an NHS funded cycle.

If you had IVF previously why go down the ICSI route this time? How many embryos were produced last time? (May be perfectly legit of course, but wondered what the rationale was for this)

Was your first round of IVF at the same place? Were the embryos transferred on day 3 or 5?

Feel free to PM me if you prefer

roastednut · 16/10/2013 18:27

Thanks so much for the reply foxfour. Sorry my mistake it was icsi last year don't know why I didn't say that (dh sperm issues). Got 8 eggs and 3 embryos, 2 put back on day 3, both implanted but was missed miscarriage after 7 weeks. Other embryo was left to day5 but didn't make it. So that was our 1 and only funded cycle done. This was in Leeds. Based on feedback we decided to give care a try but was taken aback by this immune testing stuff. My feeling is that based on one mmc it's too soon to go down that route but dh thinks it could be worth doing to potentially save money longer term on further icsi if immune testing tells us theres an issue. Hope that all makes some sense I'm typing on phone.. Really grateful for your opinion on this.

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roastednut · 16/10/2013 18:28

So just to be clear only ever had 1 miscarriage

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ohfourfoxache · 16/10/2013 19:00

Don't worry - the terminology is a bugger to get!

OK, if you've had one miscarriage then it is WAY too early to look at immunology testing. Normally these are only carried out if you've had three or more miscarriages, so to be honest I would be extremely wary of anywhere that suggests that you have immune testing now.

I know that Care have a good reputation, but is there a reason why you didn't go privately in Leeds? Completely understand if you'd rather not say - not every clinic is right for every couple - but some people find it easier to stay in one clinic for all their cycles.

I'm in London so I can't say that I know a huge amount about clinics up North, but what I can say is that if you're not completely comfortable with what the clinic has recommended then you don't have to go with them........

roastednut · 16/10/2013 20:27

I'm feeling really wary now! Such a shame because I didn't want to go to leeds again (based on their reputation and success rates). But now I'm thinking it might be a bad idea and maybe it's best to stick to what I know... Thanks so much for taking the time to reply, I need to give this all more thought!

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givemeaclue · 16/10/2013 20:36

Yes I did it. I had 3 unsuccessful icsi treatments before I reached that stage. I am so glad I had the immune tests and treatment, I now have twins from that cycle.
But my understanding is that is usually done when repeated failed treatments or mc.
However you could spend a lot more than 2000 on failed icsi , its a tough choice. Depends how old you are and how much you can invest.
If I hadn't done it, I prob would not be a mother now. good luck whatever you decide

givemeaclue · 16/10/2013 20:37

Our medical insurance paid for the tests, didn't pay for treatment but did pay for investigations.

ohfourfoxache · 17/10/2013 08:25

The most important thing when choosing where to have treatment is to go where you feel comfortable. Some clinics treat patients as a number, others have a more personal touch, so it really depends on what type of clinic you feel most comfortable attending. As I'm sure you know already, distance/ease of travel is also a major factor to consider - you don't want to have to trek to somewhere that is difficult to get to when you've got lots of monitoring going on.

In terms of success rates, statistically there is no significant difference between clinics; clinics that report a success rate of 40%+ typically have far, far more restrictive treatment criteria (i.e. they will only treat couples who have the most chance of success). In some cases clinics are set up in parallel - one to treat couples with a high chance of success, and another to treat the "not-so-good" ones.

I would really, really recommend having a look at a variety of clinics, seeing which ones you might like the look of and attend their open evenings. You will be able to tell a huge amount about the place just by visiting and talking to staff.

The other research that you could do if you wanted to is through the Human Fertilisation and Embryology Authority (HFEA) which is the regulatory body that carries out inspections etc. These highlight areas of good practice/areas of "concern". But it depends very much on how deeply you want to research each clinic - sometimes too much information can be worse than not enough!

Givemeaclue - I'm so glad your treatment was successful. I hope you don't mind me asking, and please don't feel that you have to answer, but what insurance company was that? It used to be that insurance would cover investigations if a referral was for postcoital bleeding/irregular cycles etc, but many of them have "wised up" to this now so getting them to pay out is often difficult. Please don't think I'm being nosy!

Beegey · 17/10/2013 17:47

I have to just correct something - I have immune issues but have never had a miscarriage (other than a chemical pg as a result of ivf). My issues caused total implantation failure. Just as an idea, there may be other reasons why the Dr at Care suggested immune testing based on your consult.

I went to see Dr Gorgy in London after trying fruitlessly for two years and we were lucky on our second cycle, a FET.

Best of luck, what ever you decide.

ohfourfoxache · 17/10/2013 18:04

You're absolutely right Beegey - it is more than possible to have immune problems as the cause, but these are (thankfully) comparatively rare (brilliant to hear that you were successful Grin.

If there is a problem with semen quality then the likelihood is that this is the cause of the infertility (especially as op had MMC at 7/40) rather than an immunity problem.

I'm not saying don't consider it, but I would say that if you've only had one cycle of treatment, with one transfer, then that is actually likely to be the only cycle in which the couple could have ever become pregnant given the underlying diagnosis. Sadly miscarriages are frighteningly common and, just because this cycle wasn't successful, it doesn't mean to say that the next one won't be.

I must confess that, having seen behind the scenes, I am however somewhat biased in my opinion Sad - obviously feel free to ignore this cynical old tart!

roastednut · 17/10/2013 22:50

Thanks for all the really helpful responses so far.

Fox you speak so much sense, I think I've now decided against the immune testing, but now trying to work out whether care or leeds is best for me. Travel wise it's an obvious one (leeds wins) but the success rates are better at care and I don't think they turn people away to keep the rates high.

I need to get on and make a decision, maybe having a consultation at leeds would be money well spent just to help make mind up.

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roastednut · 17/10/2013 23:15

Also it's interesting what you say about the timing of the mmc at 7 weeks and dh's sperm issues (motility and that thing where they just aren't right ie tail missing etc!).

He is taking anti oxidants now so we're leaving treatment til jan to give them a chance to improve things. My antral follicle count wasn't bad for my age (nearly 40) so figured that postponing for a couple of months wouldn't be too bad. Altho I realise that result doesn't necessarily mean I'll respond well to treatment (tho I did ok last year).
Too much to think about lately, brain is fried Sad

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ohfourfoxache · 18/10/2013 00:20

I'm not surprised your brain is fried Sad - so, so much to think about. I don't think people realise quite how difficult it is to go through. Be gentle with yourself, give yourself as much space as you need.

So glad to hear that your antral follicle count wasn't bad - that's really encouraging! And with DH taking antioxidants, that's a really positive move as well (was it reduced mobility with a high % of abnormal forms/abnormal morphology the last time by any chance?)

Roasted if you're not sure about either clinic then there is still time to look at other options. The only thing I would suggest is that you get hold of your notes from Leeds so that you've got copies of absolutely everything (you have probably done this already) and, if you do decide to go somewhere else, then you're good to go.

I know it's bad form to recommend another forum (sorry MNHQ!) but have you had a look at FertilityFriends? There is lots of helpful advice about loads of clinics, and reading other people's experiences might help a bit. As I've said above, don't be scared to look at open evenings etc - the idea is that you have an opportunity to visit a place and get a "feel" for them before you finally decide where to have treatment.

Obviously, for balance, the fertility (sorry, I HATE the term "infertility" - it always sounds so bloody negative!) and conception sections on MN are fantastic too Grin

What does your DH think? Have you talked about where he felt more comfortable? Sometimes a partner can have a different take on things, particularly as it's female patients who have to go through most of the testing/procedures - even the experience of being in waiting rooms can be eye opening!

HumpdaySelfie · 18/10/2013 00:47

This reply has been deleted

Message withdrawn at poster's request.

givemeaclue · 18/10/2013 11:09

I think the insurer was axa but cannot remember.
We still spent £17k on treatment but at least the investigations were insured. Can take a while to get the consultant on the insurer list especially if the consultation is not great at form filling!

Go to the best clinic rather than you nearest one. I had 3 failed treatments locally before switching to care. It did mean hundreds of miles of travel for every appointment but I had exhausted the options at my local clinic.

thesaurusgirl · 18/10/2013 11:15

Give me a clue Please can you PM the name of your insurer? My best friend is currently having major issues with getting hers to pay for infertility investigations. TIA, it's really appreciated x

thesaurusgirl · 18/10/2013 11:21

I'm so sorry, just realised mine was a cross-post!

Strange that you say AXA, it's they who have refused my friend...inconsistencies could mean a complaint to the insurance ombudsman so any info you are willing to share would be invaluable if you can bear it. Thank you even if you can't - quite understand why you'd not want to.

givemeaclue · 18/10/2013 14:01

It was axa but 7 Years ago. It was specific in the cover that fertility investigation was covered but not treatment.

I can well imagine it may have changed since then.

thesaurusgirl · 18/10/2013 16:46

Thank you Give. This is my friend's policy too - the problem is, she has has already started IVF so they're arguing the investigations are part of the treatment. F insurance companies.

HesterShaw · 18/10/2013 17:20

Hello everyone.

Beegey, can I ask how they knew it was immunology issues causing the failure to implant i.e before it even got to the mc stage? This is what I suspect is going on with me, and I asked our consultant about it yesterday, and she said there was no way of knowing that. Talking about it afterwards, DH said he suspected she didn't actually know anything about immune issues. I was wondering if there was any kind of medication you can take just in case this was "your" issue, but she was adamant there wasn't. I don't want to go through our one and only shot at ivf if there is no chance of ir working simply because my body rejects anything put into it.

givemeaclue · 18/10/2013 17:27

Hi beegey, they don't know whether there are immune issues without doing the tests.these isn't anything they can just you just in case as the drugs are tailored to the individual issue. There are not that many clinics doing immune issues you would need to talk to a consultant that does.
Good luck.

givemeaclue · 18/10/2013 17:28

Sorry, not for beegey that was for Hester

HesterShaw · 18/10/2013 17:34

Thank you. It's just that my consultant looked at me as though there were no such tests and no such issues in the entire world. It was almost a case of "Stop inventing things to worry about." I'm right down in the very far south west so choices of clinics are few and far between. Well ... there is no choice!

marmite20 · 18/10/2013 17:44

after 3 years of ivf and 14 attempts - plus seeing top clinicians in London - I suggest that immune testing / steriods / aspirin / all other bits and pieces ... it's guesswork. Basically, there are some things we can't play God at ... so IVF gets the embryo in position, and then it's down to luck and embryo quality (which grading is only done by eye so even that is unreliable). My advice - if time is not on your side - spend the money because you may regret if you don't but be realistic ... you will never know for sure what makes the difference really - all these tests provide indicators only from what I can tell - not hard based facts.

Also - miscarriage is common - so don't assume there is anything wrong with you from miscarrying - I had around 4 or 5 ... in fact, a period can simply be early miscarriage.

BTW - I had one daughter very successfully from IVF so it can work ... but it doesn't always.

givemeaclue · 18/10/2013 18:12

Hester after 3 failed cycles I wanted immune testing our consultant advised against it. We switched clinics to one where immune testing was available. It did require trips of hundreds of miles.