NHS IVF: worth paying for more tests privately?

[kell2126]

I recently had my first IVF cycle on the NHS as a result of 'unexplained infertility': we had one fresh blasto transfer in early July (failed) and have 6 in the freezer. We have our review appointment end of September and then probably the first FET in October/November.

My question is whether you ladies with a lot of IVF experience would recommend paying a private clinic to do some additional tests prior to our NHS FET: if we did this, and if something that the NHS hadn't tested for turned out to be a potential source of the failed fresh transfer (and a long, unsuccessful period of trying naturally), then would the NHS take the private test result into account and modify our protocol?

I'm considering private tests because even just from one stim cycle it's pretty clear that the NHS treatment we're receiving is very far from bespoke: they really seem to be just doing the basics and I'm worried that there might be a reason for our infertility that they haven't tested for and that might make the difference. I'm not getting any younger (I turn 39 next month) and would prefer to find out soon if there's something specific that needs addressing. But, I don't know if the NHS would act on results obtained elsewhere. I'd be really grateful for your thoughts on this: would you go for private tests, and do you know whether/how the NHS would take them into account?

[Cariad82]

I've heard the same thing as Pognut about the Coventry tests so it really might be worth you looking in to it further and seeing what you think. Thye seem to be doing good work there though.

With the Level 1's. The GP did:

• Anti-nuclear antibodies
• Cardiolipin antibodies (immunes)
• Rheumatoid factor
• Smooth muscle (immunes)
• MITO / LKM / GPC (autoimmunes)
• Thyroid peroxidase antibodies
• Lupus anticoagulant screen
• FBC
• ESR (immunes)
• Urea and Electrolytes
• Free Androgen Index - testosterone
• Hepatic (liver)
• LH & FSH – 8.1 / 8.4
• Oestrediol
• Progesterone
• Prolactin
• Testosterone profile
• Thyroid function panel

• T4 and TSH
  
  Some of these I'd already had a few years ago as pert of initial fertility investigations but I wanted them checked again.
  
  I then paid privately for DHEAS (because I'm taking DHEA) and an immunoglobulin panel. I have also had my AMH tested on the NHS twice but the GP couldn't order this - it was ordered both times by my gynecology consultant.
  
  The only ones I haven't had that were recommended during my research antiphospholipid antibodies (the only place I could find that would do this was a lab in London and I'd have to travel down there for the test) and thrombophilia (Factor V Leiden and Panthrombin gene mutation (expensive and my clinic are treating me empirically instead).
  
  It's difficult asking your GP for things because they're not specialists in fertility and half the time they don't know what you're on about, or they are giving you recommendations off old research. I've also found even with my private IVF consultant that opinions change depending on who you see and sometimes you just have to do your own research and make a decision about what you want then fight for it. That's what I had to do to get the empirical drugs for my next cycle.
  
  The Athens test was definitely gross! But I'm really glad we did it seeing as it showed something up.
  
  Good luck to you x

[Pognut]

Meant to say: why on EARTH are clinics not checking AMH?! That's insane! Our PCT does - that turned out to be my major problem - it's such crucial information! Absolutely crazy.

One thing we didn't do when we set out on this was to look up our NHS clinic in the HFEA stats - which are quite detailed now. I don't know if it's possible to shift clinics within the NHS, but if you haven't seen those stats, it might be worth looking just to check you're not at a less-than-great clinic; some have much better rates than others. Very best of luck.

[Pognut]

What I've been told about immunes treatment has varied hugely, depending on who I've been talking to. I started off at ARGC, who use the Chicago tests and think that what's happening in peripheral bloods indicates what's happening in the womb, and that if your immune system as a whole is a bit turbo-charged then that can affect TTC. Hence the use of intralipids, humira, IVIG, steroids etc., to try to suppress immune system activity in the whole body.

Coventry have a different theory - they think that the NK cells in the womb lining are not the same type of cells that are found in the blood, and don't behave in the same way. That means that suppressing your overall immune system will not affect your chances of conception/not having a miscarriage - they prescribe steroids to suppress uterine NK cell activity for the first 3 months of pregnancy (starting the day before transfer, I think).

There isn't 100% clear peer-reviewed scientific research backing one or the other, unfortunately. I've talked to a few miscarriage consultants now and they have all said they think on balance Coventry are more likely to be right - the research is tending that way - and I am reassured by the fact that they are academic researchers who have spent years working on implantation failure and miscarriage, working within the NHS and in a huge UK-wide research project (for Tommy's), and publishing in peer-reviewed scientific journals.

I find it a bit odd that there isn't conclusive evidence for the "traditional" immunes treatment even though it's about 20 years old now. Having said that, the Epsom clinic uses these treatments, and is within the NHS; I don't think St Mary's does? I guess in about a decade there will be clarity on this, but it doesn't help us right now...

[Zest11]

@Cariad82 omg thank you so much for all of that, it's so helpful. And yes, anything to avoid the Chicago tests would be ideal as they are sooo expensive.

With regards to the Coventry biopsy, I heard it wasn't good/pointless. Not sure if that's true or not...?

My GP is kindly doing the Level 1 tests (after I got in a strop and then cried...how embarrassing!) Which ones did you have to pay for? I think he mentioned there were some he couldn't do but I can't remember which. I also asked about the steroids and some blood thinning drug and he basically laughed in my face! Oops, will have to ask that with the consultant.

I've not heard of the test where you send period blood to Athens. Sounds completely gross but actually is nothing to what we've been through already. Think I will try that too! Thank you :)

[Cariad82]

Sorry - I just saw you've had a lap and hysteroscopy!

[Cariad82]

Hi

I have had 3 failed IVF cycles and we have unexplained fertility. I've done a lot of research in to additional testing. If you haven't already had these done this is what I would personally recommend:

A laparoscopy and hysteroscopy (available on NHS, though you might have to push for it).

Level 1 testing (this will also cover some basic immunes) - I got most of these on the NHS. I basically went in with a big list compiled from my research and begged the doctor for them, and she kindly ordered them for me. A couple weren't available on the NHS and I had to get these privately, costing £210.

Hidden infection testing - this is done via Serum in Athens. You have to send them a sample of your period blood and they do a test of your womb lining cells for various infections that might not be picked up on a standard test - chlamydia, herpes, bacterial infections etc. Costs £300 (we tested positive to ureaplasma and were prescribed antibiotics)

I would personally hold off on the Chicago immune testing until you've had these done because it's so expensive and only a very small percentage of people actually have this issue. Rule out the more likely things first. You can also ask your consultant if they will consider treating empirically for immune issues - we are doing this and are going to have anti-coags and steroids on our next cycle. The only thing they can't prescribe empirically for immune issues is intralipids. If you are considering the Chicago tests you should maybe look a the Coventry biopsy instead - cheaper and covers a lot of the same thing.

We also had karyotyping done privately (cost £1000) because we didn't qualify on the NHS.

If our next cycle is unsuccessful we will probably have sperm aneuploidy and DNA fragmentation testing done too.

Hope that helps - if you want any further info about any of it just let me know x

[Zest11]

Thank you for all the people that have replied and to Kell for starting this thread. Does anyone recommend any tests we could have with "unexplained" infertility and where to go to get them done without having to sign up for IVF with a different clinic? I have had my tubes checked, including a lap and dye, hysteroscopy, amh, etc etc. I am thinking of getting my immunes and nk cells tested privately.

[AliceAbsolum]

Yes pay for private tests, the NHS will give sub par care to save money. You could potentially waste all your embryos worst case scenario.
I spent 4 years with the NHS as "unexplained" turns out my egg reserve is extremely low and now I'm having to use donor eggs, I wish I had paid for tests earlier.

[CrackOn]

Ask the doctor you're dealing with. I've not had IVF but have had the nhs refuse to take private practice tests into account and insist on going by their own.

[AEL79]

Hello both, sorry to hear you've not had success so far.

I can't give you any especially specific advice, but thought I'd mention that in my opinion it's probably worth having the standard assessment test package at a private clinic. I do think that the NHS would add these to your file, as I was recommended by our consultant to get a private AMH test as North Herts PCT don't cover it.

Doing that was what told us that our "unexplained fertility" was actually my AMH of 1.9...so low that we wouldn't have qualified for funded IVF! I was 37 at the time (now 40), and discovered that I had the reproductive age of someone 15 years older...but unfortunately nothing currently provided by our PCT would have told me that, so we'd honestly spent a couple of years wasting our time and should have gone straight to self-funding (like it's that easy to find the cash...but you know what I mean).

We've since had 4 self-funded rounds in the UK (2 own eggs, 2 donor) and am now in Spain hoping that their enhanced testing will yield some results...FET this month.

[kell2126]

Thanks for responding, @Zest11 and I'm sorry for your failed transfer too. Hopefully someone will be able to advise us on these questions!

[Zest11]

Hi Kell. I am so sorry to hear of your failed transfer but 6 in the freezer sounds amazing! I can't add anything to this as I am in a very similar position with unexplained infertility and thinking there must be a reason. We just had a failed go and have 4 in the freezer. I too am wondering about paying for tests so hopefully someone will come along soon and answer. Thank you for asking these questions.