Anyone had Immunology tests?? 🤯

[Lu1u]

Hi everyone..

Just wondering if anyone has any experience of immunology testing prior to ivf??

Brief history- I’m 40- never pregnant- unexplained infertility, 3 rounds of ivf/icsi- 6 transferred, all negative. ..After a years break we decided to get a different clinics perspective.. (and it happens to be the most expensive london clinic! 🥴)

Went there today armed with all our medical info.. and the dr said he wd highly recommend getting immunology blood tests done that they send off to Chicago. They take a blood test (I thought to test for this you had to take endometrial blood??)... anyway the cost of the test is £1000, but then if anything needs treating the cost sky rockets to levels we can’t actually afford... not to mention if the ivf worked he said I’d need continued monitoring and iv drugs etc costing 2000 per pop....

my brain is just frazzled!!! I guess my question is- is it worth being tested - my impressions were the evidence is mixed as your nk cells vary daily and in different parts of the body,and as I said, I thought it had to be endometrial blood not arm blood?! ... am I being a mug? We really can’t afford this but he’s basically said I’d be a fool if I didn’t get it tested! And even doing a cycle without this test is mega expensive at this clinic! Is he just being a salesperson?

Please let me know your thoughts or experiences .. I’d be grateful for any insight!

Best wishes and luck to all of you

Xx

[Hollibob]

Different consultants and clinics have different beliefs.

Have you looked into the natural killer cells test that can be done in Coventry, this one takes endometrial biopsies.

There is another clinic in Epsom, where the consultative does nk cell tests but using a blood test.

Not sure on your partner situation, but for men there is a dna sperm comet test that can be done, which is more in-depth than the normal sperm tests.

Definitely do some research, as the last thing you want to do is put yourselves under financial issues causing more stress x

[Lu1u in reply to Hollibob]

Hi, thank you for replying.. yes I will find out more about the sperm dna tests I think as fragmentation could be an issue that hasn’t been tested! It’s all so confusing- especially when different consultants tell you different things! It’s all just a big lottery really! .. anyway I’ll do more research- but I’m really grateful for your information! Thank you xx

[Lu1u]

Hi, thank you for replying.. yes I will find out more about the sperm dna tests I think as fragmentation could be an issue that hasn’t been tested! It’s all so confusing- especially when different consultants tell you different things! It’s all just a big lottery really! .. anyway I’ll do more research- but I’m really grateful for your information! Thank you xx

[Nodds]

Hi, we investigated the NK Cells approach too and my brother & sister-in-law had the Chicago test when it was really new (it was inconclusive and they have since adopted). Basically, nothing is proven to work/ give an insight. Coventry do a procedure similar to a scrape - but the results are only applicable to one month because the lining changes each month. We went and spoke to Dr Ndukwe in London and came out completely deflated, as he said I could have the tests, but they’re not proven to work. Then he basically said that I wasn’t ‘desperate enough’ 😱

That made our minds up that it’s money for nothing. Sorry to be a party pooper if you’re thinking about it - but it’s just not for us. I’m sure that there are some people who found it really useful. It’s frustrating though as I really feel that immunology plays such a significant part and no one knows anything about it 🤨

Sending you lots of love and happiness xx

[Lu1u in reply to Nodds]

Hi Nodds, thanks for your message.. yes it’s so frustrating as I’m sure immunology plays a big part in infertility but I just feel it’s not understood enough at mo and I don’t really want to be a lab rat pumped full of immunosuppressants that I can’t afford! I work in the nhs and see the detrimental effects of steroids frequently- even when taken short term for asthma etc! .. anyway I’m sorry dr Ndukwe left you so deflated- we went to ARGC but I must say I feel the same- and almost even more of a failure as I didn’t want to admit that I just can’t afford this type of treatment!

Do you mind me asking what you decided to do- I see you’re stimming- wishing you loads of luck for your cycle! 😘 x

[Nodds in reply to Lu1u]

My brother & sister in law had multiple cycles at the ARGC, and I had a failed ICSI there too (with my 1st husband). They’re pretty brutal with their protocols and the constant ringing of the credit card machine whilst you’re in the waiting room was a bit off-putting! I did another ICSI at a private clinic in Dorset as couldn’t face the ARGC again. I then got divorced (treatment stress definitely played a big part). I’ve since remarried and we have been diagnosed with ‘unexplained’ infertility 🙃. I’ve got an autoimmune skin issue (Lichen Planus) which made me think that immunity was causing some issues with conception. Strangely it only flares up around ovulation 🤔. We’ve had 3 failed IUI and had an EC yesterday - 8 collected and 4 have now fertilised 🤞🏼Fortunately all at the NHS clinic in Salisbury who have been brilliant to work with. This cycle has been the best experience to-date and I’m feeling really positive. Personally I wouldn’t go back to the ARGC, but I know that it works well for some people. Just go with your gut instinct - it’s always right. Sending lots of love xx

[Lu1u in reply to Nodds]

Wow- that’s great news- got everything crossed for you - Hopefully your positive experience this time will turn into a positive outcome! 🤞..

thank you for sharing your story- I’ve had similar relationship breakdowns - and totally agree that it was mostly due to the stress and pressures of ‘infertility!’

.. Yes the ARGC do seem so brutal! At first I thought I wanted that - but now I’m a bit intimidated by it! We have lots of thinking to do!!! 🙄

Anyway please stay positive and keep me posted with how you get on- sending you loads of luck!!! 🧚‍♀️ ✨xx

[UNICORNDUST78 in reply to Lu1u]

I literally left my appointment yesterday feeling deflated and back to square one. I had a look at prices online and it didn't appear to be in the region that was advised otherwise I wouldn't have made the appointment in the first place. I certainly didn't need to spend £180.00 to find that out either... Found consultation quite abrupt and insensitive...

[Hidden]

Nk tests are not proven. Look up the traffic light system for add ons on the hfea site. Do you mind me asking how many eggs you get each time and if you have done icsi? Xx

[Lu1u in reply to Hidden]

Hi, thank you for your reply!! I will look up the traffic light system thank you. I know the nk tests aren’t proven but the big clinics say that’s just because there hasn’t been any RCTs so the hfea can’t endorse it?!.. it’s difficult eh - I mean if I was a footballers wife I’d just go for it but I am skeptical... but they made me feel like I’d be a total fool if I didn’t do it- and basically said if I’m spending so much money on ivf then I shd invest a bit more and go the whole hog to cover that angle! This was going to be our last attempt and I was prepared to throw everything at it - but I just don’t have £20k + to spend on this! We’ve already invested a lot financially and emotionally on previous cycles..(as does everyone) ...

Anyway, sorry- to answer your questions - 1st round 18 eggs, 2nd 10, 3rd 10.. we did icsi 2nd round which was disastrous as all but 2 disintegrated on injection- the 3rd they did half ivf half icsi but there was a high attrition rate and by day 3 the remaining 2 (1 of each) were transferred - all cycles negative..the reason we did icsi is they said on our first round there was low sperm binding- however in hindsight that was our best cycle as we got to day 5 and had2 good blastocysts put back?! I think that’s why the new clinic thinks it’s immune related as I’m ‘rejecting’ them when they are put back and they’re never getting to implant!! I’ve had a lap and hysteroscopy with mild endo but nothing major..

Do you have any other ideas? Id appreciate your thoughts as I know you’ve been through a lot yourself! Sending you all the best! 😘 xx

[Hidden in reply to Lu1u]

Sent you a dm xx

[UNICORNDUST78]

Hi There LU1u,

I had a similar experience at (the most expensive clinic) quoted in the region of £16000 for a cycle that would include immunology tests which I get that it would be helpful in my case but £16,000??! Plus his use of language I found appalling. Using terminologies such as '...we'd advise whether or not you should bother' is just not acceptable...

I did feel also like I was being taken for a ride. Insisting I get tests for things I've recently paid for elsewhere. Even down to the counselling he insisted would need to be repeated and probably paid for... He also insisted I acquire my own med records form my previous NHS Private Healthcare Clinic because they were not allowed to do this but I have had a clinic very easily acquire my notes with a simple email request. Their stats are supposed to be impressive but personally I was very put off by them - think Im going to return to my original clinic and inquire about immunology testing before starting a 3rd cycle...