# Immune testing on a budget



## KateMart (Jul 14, 2014)

Hi ladies,

After two M/C at 5 weeks and one at 8 weeks a few years ago, I'd like to do some immune tests before embarking on our last NHS IVF cycle.

I've done a lot of research and had level 1 immunes with my GP last year after the first M/C. I also did thrombophillia tests (all clear) and plan to do the Hidden C yuk test at Serum during next AF.

I've looked into immunes with Dr Gorgy and initially that's what we had decided to do. But as far as I can tell, the mimimum cost for this is £2k - and we'd need to do some tests on DH as well such as sperm DNA frag, as we were initially diagnosed with MF infertility.

The problem is: we don't have £2k yet, we have a lot of unavoidable expenses coming up such as moving house and we need the tests to be done before October so we can fit in the last NHS IVF before funding runs out. One option is a loan from parents but I don't like to ask. The other is trying to find a cheaper but effective option.

Is there one? I know we can get karotyping on the NHS to save some £, but I'm not sure if there are any other immune docs/ clinics who will treat alongside an NHS cycle. I'm really starting to worry we won't be able to do the tests in time  

Any advice much appreciated xx


----------



## hopeleeds (Nov 8, 2014)

Hi kate

i am sorry for your loss i have just had my third loss recently and currently under Leeds Miscarriage unit they are doing loads of tests which are free.  Can you be referred to a miscarriage  unit and get them to do loads of tests.  They are going to send me to warrick uni to get some tests done too ones a biopsy of the womb and the other is for NK cells ( i think thats what its called Killer cells ) i can get you the info and send if you need 

I am sorry i cant help any more but i am thinking of you and hope you get your miracle very soon x Hope


----------



## Orchid-1 (Nov 5, 2014)

:Hi Kate
A friend of mine went to Dr G and found him hugely expensive.

Serum does Chicago tests now which works out cheaper [ approx 390 euros?) as well as sperm DNA frag tests [100 euros], sperm analysis [ 80 euros]. Best to check with Serum their uptodate prices. We received the test results very quickly.

Some ladies also do uterine biopsy with Prof Quenby or Dr Ledee in France. approx £390? Hope that helps. 

I've been pouring through Dr Beer's book 'Is my body baby friendly' to see what I would need before I next cycle as well.

ps Penny can also advise on sperm improvement protocol and likely treatment with immune issues


----------



## KateMart (Jul 14, 2014)

Hi Hopeleeds and Orchid 20,

Wow, that is super helpful, thank you.

Hopeleeds, I'm so sorry for your losses too. Where did you get referred, was in your GP or your IVF clinic? And how did you get the referral to the university?

Orchid, that is very interesting that it's not only me thinking Dr G is steep! I had considered Serum for the tests but didn't think it was possible without travelling. Is there any way to do the Chicago tests in the UK through Serum? I imagine the sperm DNA one would be a problem.

I have Dr Beer's book too! There is so much to consider! xx


----------



## Orchid-1 (Nov 5, 2014)

Hi Kate - re Chicago tests Serum
Not sure if you can post your blood to them to test it ie in terms of how fresh it needs to be. I think the HFEA have regulations for sending out sperm from an UK clinic. I did not want my GP involved [the NHS goes a nice shade of grey when you mention going abroad for treatment!], but off course it depends on what suits for you.. You can ask your clinic about paperwork and if they do it.

Simpler to go there for the Sperm DNA. If everything is fine, it gives the option of whether you guys want to leave samples for freezing or not - if you want to come back for IVF treatment at some stage with Serum[ I think 180 euros for 3 vials?]. It would save your DH time and money in terms of having to travel back.

I flew there, stayed overnight at a hotel [Athinais] and left the same day- still worked out cheaper than £2k with Dr G. If you are having the hidden C test with Serum anyway then you could do the tests whist you're there.

You're doing well to plan what you may need now. I wish I known about the Chicago tests when we went to do the Hidden C - etc 

For flights I look up Kayak.co.uk - then booked direct with the carriers. Hope it works out for you. xx

ps The prices I quoted were in Euros - works out cheaper in £s. I also use Agate's excel sheet for budgeting so that I can keep a track on how much i am spending. Can't remember where it is on this site


----------



## Cloudy (Jan 26, 2012)

Hey honey  

Your GP should refer you to the recurrent mc clinic, they will do kayrotyping and although it's mostly absolutely fine, they may sometimes find something so it's definately worth ruling out. Plus it's free on the NHS and if they do find anything you will immediately be referred to the relevant genetic counsellors/experts etc.

The uNK test can be done at a few places (Nurture Nottingham and Prof Quenby at Warwick) and you can self-refer. If you email/call them they will send you the information and get you in for the test on your next cycle (a few days after ov) and I think they both charge the same, about £370ish.

A recurrent mc clinic may also be able to do you a 3D scan which saves about £100. They may also often prescribe things like high dose folic acid (I also got metformin as I have PCOS).

Oh, and I also did the yuk test at Serum: I went for the mid-priced one and got my results in about 10 days.

Good luck xxx


----------



## KateMart (Jul 14, 2014)

Hi Orchid,

Thank you, I really do like the idea of Serum - and it sounds like it'd be a lot cheaper! I know what you mean about NHS. My clinic don't even 'believe in' immune issues (although strangely they are prepared to offer clexane and steroids). So old fashioned! 

I was going to do the hidden C via the post. I'm guessing the Chicago blood tests can be done for about £500 here (heard Lister does them for about that). But I think I'd like the uterine biopsy for NK cells too. 

Great idea on the spreadsheet! xx


----------



## KateMart (Jul 14, 2014)

Thanks Cloudy (and hello again!). I'm going to book an appointment with my GP now!

Great on the NK cells too. So much cheaper than Dr G, what a relief to be able to afford it. Only the DNA frag test to worry about now, I'm sure someone will do it!  

Although I worry if they do something will my NHS clinic treat me - what if I need intralipids etc? Who would prescribe them if my clinic doesn't use them?

Which yuk test did you do? I think I was doing two adding up to about 270 euros.
Thanks again xx


----------



## Cloudy (Jan 26, 2012)

We do keep bumping into each other don't we!  

Some ladies have been privately having immune treatments at different clinics to where they are having their treatment so I don't know if that would be an option. Although I know some people have said it's cheaper to have intralipids abroad, even when you add the cost of flights!  

My recurrent MC doctor said she would prescribe me steroids under the NHS if my uNK cells test said I needed them, but that would be the extent of the immunes treatment we could get on the NHS.

Mine was 270 euros: it was for the 7-in-1 and the basic one. It was only a few weeks ago but I can't remember what it's called! I also sent it through the normal post (classed as an ornament) and it was about £4 I think.

Xxx


----------



## KateMart (Jul 14, 2014)

We do!  

That is why I originally thought Dr Gorgy - as I know he treats alongside NHS. I am the same as you: my clinic will prescribe steroids (and actually offered me them last cycle - I didn't want them unless we knew I needed them).

I think that's the same tests I was looking at. Did you hand it over at the post office counter? What was your result? x


----------



## hopeleeds (Nov 8, 2014)

Hi Kate cloudys a star and answered the questions you asked me ... i was referred by my GP they did it very quick and within 2 days i had the appointment at Leeds 

i could of waited and seen the fertily clinic and they could of referred me to see someone but they take forever and i refuse to wait around now.  once i have my test results back from the hospital i am going to go to warrick uni to get the tests there done.  I am like you we are going to do IVF again but i need to have all these tests done first before we spend 5 k xx wishing you all best for your miracle we can do this xxx i am starting the sperm to egg plan tomorrow give that a go god knows i have tried everything else .. its so so hard all of this the one thing in the world we want and its so hard to get xx Big Hug xxx


----------



## Cloudy (Jan 26, 2012)

Yes, just wrapped my urine bottle up in cling film, foil, paper, and put it in a box and wrapped it in brown paper (no string, its not what the writers of a Sound Of Music had in mind) and went to my local post office. they did ask what it was, and i felt so guilty, but i managed to tell a little fib!

My results came back clear - apparently there was a very slight increase in some of the bacteria levels but nothing that needed any treatment for now. They did say i might want to consider antibiotics when i do another cycle, but im not going to do that unless i do another fresh cycle.

xxx


----------



## KateMart (Jul 14, 2014)

Thanks so much everyone!

I have my review following my failed FET tomorrow so am going to ask what they do at my clinic. I am also going to ask about whether they would give me anything more than steroids if I needed it - although I don't hold out much hope. 

I think we are going to have to prioritise - so DNA frag for DH, plus a uterine biopsy, NK cells and Hidden C for me - then do the fresh cycle later this year hopefully armed with some knowledge.

Cloudy, I like your wrapping technique and shall take inspiration for when it's time to do mine  

Thanks again ladies x


----------



## Guest (May 22, 2015)

Hi ladies please could I ask when do people tend to have a uterine biopsy? Is it just to check for adhesions etc? As NK cells can be tested via blood tests am I right? Thank you!


----------



## KateMart (Jul 14, 2014)

Hi Merlin,

From my understanding, if your blood test for NK cells comes back positive, it's likely you have them in the uterus, so no need for uterine biopsy. BUT the blood test can come back negative and you do have uterine NK cells. So the uterine test is more accurate.

For me, I have time constarins as about to cycle again - so am having the bloods x


----------



## Guest (May 23, 2015)

Ok thanks Kate. Do you know what a uterine biopsy involves? I had a laparoscopy & hysteroscopy nearly 10 yrs ago, the results of which were ok & I'd rather not have to go through that again! 

Merlin x


----------



## KateMart (Jul 14, 2014)

Hi Merlin, I haven't had one but I think it is similar to a hysteroscopy as they can take the biopsy while doing one. You might just be able to have a biopsy though, involving them taking some cells from the uterus. X


----------



## Guest (May 23, 2015)

Thanks will look into it. All the best x


----------

