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Hi ladies

We had our first appointment at CARE Manchester with Mr Patel. I had been in contact with them beforehand and had asked what tests did they do and could I arrange any of these in advance of our visit as we were travelling across from the Channel Islands. I was sent a list and so I gave the level 1 list to my GP and had bloods taken (privately) and also came across the Reproductive Immunology Centre in London who perform some of the Level 2, NK Assay, TH Cytokine & LAD, they have also very kindly arranging the HLA DQ one for us. This all worked out alot cheaper than getting them done by CARE and it meant we also had some results to discuss. I sent the results up as and when received so they had them well in advance of this visit.

At the consultation Mr P basically told me off for not using them and advised that they do not trust any one in the UK to do these tests properly, he also then said that I didn't have full Level 1 results having only very briefly flicked through them and wants me to go back to his clinic to get them all re-done again at £500+. Now I gave my list to the GP that we had originally been supplied with and I believe we've had all those tests but because they are not in his format he's not taking the time and looking at them properly.

Looking at the Level 2 he agrees that we have negative LAD and that he would treat with Intralipids. he has also said he will accept the results of the HLA DQ tests when they arrive. My NKa showed 15% for the 50:1 ratio which he said is ok. He has said that if this also shows a problem he will then require us to get CD19 & CD5 tests undertaken and have a series of Pelvic blood flow scans, all for the bargain price of £720, the bloods being £140 of this. He then went on to say he would only do scans if the bloods showed there was a problem, but then in the next breath said "oh we'll do a scan when you come back for the bloods". Surely if he's going to do the scan anyway we don't need the bloods?? Oh and RIC offered to do these free for us when I asked why they weren't in the results we had received and I was booked in for a scan yesterday but he decided not to go ahead.

The impression I got was we would be on intralipids anyway because of negative LAD, my womb lining always struggles to thicken so would have thought this was an indicator that there probably is an issue there so I don't understand his persistence in getting some of the tests re-done.

He ended by saying he was sorry it was a wasted trip and to arrange another appointment for 10th Jan to get bloods & scan done, knowing full well we don't live in England and therefore have to fly across to attend these appointments.

He just seemed to jump around so much that I'm really not sure if I actually need to fork out all this additional money or if we should just say can you treat us for the LAD issue and a suspected pelvic blood flow issue without having to have all these tests.

Am I just being stupid and missing some vital point?? Sorry for ramble but I feel so deflated now I'm tempted not to carry on with the whole process.

Nikie
 

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Oh Nikie, don't give up  ^hugme^  Although I do know how disheartening it can be and I'm starting to question whether we were right to go down this route and change clinics too. My GP had offered to do some of the tests too but as CARE offer all the tests as a package, it was pointless getting the gp to do them as it would have cost more to do them individually  ::)

You must feel so frustrated having flown over and not getting any satisfatory answers. Do you think you'll go back next month?
x

 

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i think one of the issues might be that although RIC do the cytoxicity part of the NK assay, they don't do the immunophenotype part (the relative concentrations of CD3, CD19, CD56 and CD19+5+)... and docs get used to relying on looking at a particular set of info to base their decisions on.  the RIC cytokine ratio also seems to measure totally different cytokines to the ones that most specialist immune docs rely on (TNFa:IL10).

DQa is always DQa though, whatever the lab.  the issue with DQa is whether or not you have a genetic match with your DH.

negative LAD is not necessarily a problem depending on your pregnancy history.  'Normal' ladies' LAD will rise naturally on pregnancy - its only a problem if it doesn't do that - so, its more likely to be a problem if its negative for a lady with a history of failed/successful pregnancies - but if you don't have a pg history, and its negative, you don't know if you are 'normal' or not... so a lot of ladies without a pg history but with a negative LAD will decide to treat it just in case - but the only treatment that tackles it directly is LIT.  intralipids isn't really a treatment for negative LAD - but it is a treatment for several other immune issues that MAY be exacerbated by a negative LAD e.g., high NK cytoxicity.

the main treatments for a pelvic bloodflow issue would be blood thinners like clexane and vasodilators like vaginal viagra - it sounds as though Care like to use doppler U/S scans to look at bloodflow - other docs would rely on whether your lining normally looks good on U/S when you do IVF.

I don't know whether any of this is any use to you, but I guess the main points are:
low LAD on its own, itsn't really much of a diagnosis - especially if the intention is to 'treat' it with intralipids - but a DQa match can be a significant issue (you don't know if you have a match with your partner until you get your DQa results back) - a DQa match of itself is not necessarily an issue, but it can cause significant rises in TH1 cytokines and NK cytoxicity (and possibly other issues like raised APLAs) whenever a matched embryo tries to implant
most docs like to rely on a particular set of tests that they have experience with and the RIC ones are not the same as the RFU ones - so the doc at Care might not be happy to advise based on unfamiliar tests
some docs rely on other criteria than doppler ultrasound to diagnose lining issues - which they treat with clexane, estrodial valerate, vaginal viagra, terbutaline (spelling?) etc

I guess maybe if you are going with Care, you have to follow their own testing and treatment protocols?
 

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Discussion Starter · #4 ·
Thank you for all your comments.

Regarding the Cytokine RIC test using both IL-4 and IL-10 and both of these were normal.

Regarding the LAD I had a mmc at 11 weeks about 2 years ago so i guess the fact the mine is negative isn't a particularly good sign.

I should get the DQa shortly and RIC have offered to run the CD3, CD19, CD56 and CD19+5+) free of charge for us, plus we can get the bloods drawn in Guernsey and courier it to them rather than having to fly across.
He also kept saying that the CD19+5+ were linked to blood flow issues and if those came back positive for a problem he would do the scan, but actually then decided to do the scan on the same day we would have bloods drawn which then makes me wonder if we needed the bloods as my NK Cell 50:1 ratio was only 15% which he said was fine.

I think what I am more perturbed about is the fact that they knew we were going to arrange some tests as they sent me the list advising me what I needed to get tested, and then they'd had the results for weeks and he hadn't even looked at them before our consultation and he kept saying we'd had a wasted trip....
Ah well I always knew it wouldn't be cheap but I do feel a little annoyed that we are going to have to repeat tests we've already paid for because of their error rather than ours...
 

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cd19+5+ are the subset of B cells (antibody producing cells) that are most related to auto-antibodies - which can include anti-hormonal antibodies e.g., anti-progesterone.  so they can be linked to lining issues.

tnfa is the cytokine that most docs use - but normally in the ratio between tnfa and IL10.
 

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I'm sorry i can't help but just wanted to say that sounds v frustrating and whatever you decide to do you should feed that back to Care - you are paying a fortune and you aren't happy.
I had treatment at Care Sheffield and though they made it clear they preferred me to do all my tests through them they were fine with the level ones through my gp as they knew I was bound to try and get what I could for free. I know they would have been iffy about any I had done privately elsewhere though.
Good luck - we don't need these extra hassles do we - but we face lots of them...
xx
gettina
 
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