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Discussion Starter · #1 ·
Hi,

We've had so many miscarriages its totally heart breaking.

We've got about £1000 to spare for testing, do you think this will be enough to pay for everything needed?

We were looking at Dr  in London, I was wondering if he is 'the' guy to see for the testing, or is there anyone else who is better?

I've seen Dr Gorgy mentioned, he looks a lot cheaper, and you're allowed to type his name on here which appears to be a good sign!

It's a big step for my hubby as all the losses have totally crushed him, he's adamant that even if we find something we can treat then it'll probably end the same way again which he can't cope with.

I just pray that we can get lucky in 2011.

xx
 

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Hi Mrs Maguire

Sorry to hear about your miscarriages ^hugme^ ^hugme^ ^hugme^

The name of your Dr is missing from the post - I think I know who you mean and his surname begins with S and he is in this article - http://www.epsom-sthelier.nhs.uk/news/news-archive/2010/february-2010/miracle-baby-arrives-after-18-miscarriages/ He doesn't like his name being posted on forums or the name of his private clinic so you will find it is automatically removed from your posts.

I wasn't treated by him for my IVF and immune issues, but whilst pregnant I was under his team at Epsom Hospital - I have to say I was really impressed. In terms of the costs for tests - I had all of the tests mentioned on this board including the Chicago tests - I think the total cost was around £800.

I was under the ARGC clinic - they use steroids, blood thinners (clexane, baby aspirin) and IVIG/intrallipids to treat immune issues - steroids are cheap to use, but the treatment itself can become costly if you need things like IVIG (although I'm not sure Dr uses this as all Drs have different protocols).

Sending you lots of ^reiki^ ^reiki^ ^reiki^ for 2011

Karenanna xxx

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Discussion Starter · #3 ·
Hiya,

Is there bad connotations why he doesn't like his name mentioned on here?

I've tried contacting his secretaries, once was about 2 months ago when I enquired whether he would consider prescribing empirical immunes like steroids / prog support / possibly blood thinners without all the tests. I just got a bog standard email saying I'd have to pay for the main consultation. Back then I didn't want to have to pay for a consultation for him to say 'oh no you need to have tests before I can prescribe'

Are there any other people in the UK who are good with this kind of thing?

I've been offered another referral to the multiple miscarriage clinic but I've already had the level 1 tests done, I can't see what else they're going to be able to do. With the kind of conditions I have, I'm sure the problems are with things like NK cells and possibly TNF's as for rheumatoid arthritis they prescribe humira and other anti TNF meds.

I'm just hoping that a simple course of pred / cyclogest / possibly clexane (baby asprin has never really done anything for me) will stop us miscarrying.

There's so many pregnancies in my family at the moment its a joke, I know my son would be beyond happy to be made a big brother.

xxx
 

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Hi Mrs Maguire,

I'm so sorry for your losses. I have seen both doctors and in my experience Dr Gorgy offers a wider range of treatments and diagnostics. Dr  tends to focus on steroids and clexane, but the tests I had with Dr Gorgy were much wider ranging, and I've had a very tailored treatment plan from him including humira, intralipids, steroids and clexane. Immune treatment isn't cheap (even though I'd had most of the level 1 tests done it cost me about £1200 with Dr Gorgy for the tests and consults), but I learned that I had some new issues I wasn't aware of that could make all the difference. Dr Gorgy has also started to offer LIT in his clinic - I had it and my results came back much improved (though I still have to get my sticky bfp yet... this year the problems have been egg/sperm donor related, less to do with me!).

Hope this helps and good luck hun,

Rose xx
 

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I think the history with that particular Dr  etc is that he was unhappy when some ladies posted with their grumbles about him and asked the FF team to prevent any posts about him... but I don't know the whole story.

If you are looking for empirical tx only - its a bit hit and miss.  the specialist immune docs generally won't do it because they all have their own testing and drug protocols and don't encourage empirical tx.  but most general fertility docs aren't keen on it because they don't know much about it and aren't comfortable prescribing without being in their comfort zone.  however, a few general fertility docs will treat empirically - but mainly for IVF ladies who have had several failures already.  I don't suppose your GP is prepared to treat you? (am assuming you are trying naturally)

Within the specialist docs, there is a big difference between approaches.  Conservative docs like Regan and Dr etc tend to do some immune testing and then treat with clexane&steroids mainly.  More aggressive immune docs like Dr G, Care and ARGC do specialist testing and use a wider range of (more aggressive) meds, but the costs add up.  Then there are some that are sort of in the middle like Lister.

If you haven't seen it, you might get some ideas from my faq.  link in my signature.

my HUNCH is you will probably turn out to have problems with clotting and with NK cells because of the number of miscarriages you have had, the endometriosis (which often goes along with NK activity) and the fact that you have had a successful pregnancies before having RPL.  to me that suggests, quite possibly a DQa match (in which case, you'd maybe want to think about going to Gorgy or Care - dqa matches can trigger NK and clotting problems, but equally, so can endometriosis - the main difference is that those triggered by dqa matches can sometimes be more stubborn to treat.

the cheapest option would probably be if you could get your GP to refer you to one of the NHS RPL clinics - you might get to be seen by someone who would at least do basic clotting tests and possibly a basic NK screen and at least be Tx'd with clexane (aspirin?) and steroids.  That might well be enough to help you stay pregnant, particularly if you can get someone who will start you on meds before ovulation - but you won't know if its going to be enough for you unless you try it. 

I think if you want to be more thorough and have the option to go all out for aggressive treatment right from the start  - you might want to go to Gorgy (he is quite flexible about letting you decide which bits of treatment you want to try if you have strong ideas of your own - but he will always tell you all the drugs and treatments up front (after testing) that he thinks would be the most likely to work from the outset - because I think he prefers an 'all guns blazing' approach - I guess because none of us are getting any younger and immune issues tend to get worse over time), but it will easily cost more than £1000 and you should probably try and see if you can get level 1 tests and karyotyping done first with your GP so you can take those results with you.  Have a look in my faq under L for level 1 tests.

hope this helps
 

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Hi Mrs Maguire this thread is really helpful - I've had 5 chemicals since having my ds and as dh has said one last go I have persuaded him we need to try the immunes testing.

Hi Agate - can I just ask if I go to Mr G can I then go to either Lister or ARGC or is he tied in with any other clinic?

Its so hard to do know which way to turn especially with the pressure of it probably being my last go.

Thanks Ax
 

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Think you've got a pretty comprehensive answer already, I was going to second what Rose said re Dr G being more comprehensive than Dr S..but as Agate says, also more expensive if you end up needing more than just pred, clex and aspirin.

I posted on this somewhere else (will see if I can find it) but I have spent somewhere in the region of £15-20,000 to get me from pre BFP to 27 wks pregnant with twins - I may be a 'difficult' case and there are ways to keep costs lower but although your £1000 will cover most of the essential tests, it won't stretch to any of the actual treatments themselves and if you, like me, end up needing to be treated throughout the pregnancy (I have had multiple IVIG drips which are very expensive, plus regular scans, re-tests and consultations) then it all adds up  :(

da1sy - you can certainly have tx elsewhere and just have Dr G do your immunes. Many of Dr G's patients have their IVF abroad but there are others who use other UK clinics and just have their immunes done through Dr G. I think the exception to this is probably ARGC -I have no personal experience of them (they don't treat single women like me...) but from what I've read on here, they offer a pretty comprehensive immune program themselves and are not very happy about their patients also having other consultants (that said, what they don't know, they can't get upset about!)

best of luck to you both,
Suitcase
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