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Discussion Starter · #1 ·
I have copy and pasted this from my introductory post, sorry it's so long...

I got pregnant in 2007 without trying, was well throughout my pregnancy until our little girl was delivered by emergency c-section in November 2007 (7 weeks early). She was delivered because I had pre-eclampsia and HELLP syndrome, I was very ill and didn't meet her for a few days. All is great with her, no re-procutions from being prem. We started trying for a second child in September 2009 got pregnant November but miscarried at 8 weeks at Christmas. I got pregnant straight away, before having a period but miscarried again at the end of February at, I think, about 7 weeks. Was pregnant again in May but miscarried at 6 weeks in July. We have been trying since then but have not managed to get pregnant again. I turned 40 in April too

I have been seen by 2 consultants at St Mary's in Manchester, one is a pre-eclampsia specialist and the other is for recurrent miscarriage. They both say that the tests that I've had done are all 'normal' and that I should just keep trying. I have been taking low-dose aspirin since my last pregnancy (to reduce likelihood of pre-eclampsia again) but still miscarried. Both consultants are saying that next pregnancy I will also need to have daily injections of heparin. The consultants are saying my tests show that the pre-eclampsia and recurrent miscarriage are not related but I find that hard to believe.

I have seen an acupuncturist recently who recommended FF and Alan E Beer's book 'Is your Body Baby friendly?'. I have been reading it and so much of it seems relevant to me (prone to allergies, have asthma/eczema, night sweats, sweaty hands and feet but very cold other times etc) and now I'm worried that I'm not receiving the right treatment and without it am unlikely ever to conceive/sustain another pregnancy. I'm trying to find out as much as I can about reproductive immunology and who in the UK may be able to advise on the level of testing I require - I've heard there is a doctor at Nottingham Spire who was trained by Dr Beer. I know the level of testing/going private is likely to be very expensive but as I'm sure most FF feel, I'll do whatever I can.

Has anyone out there had similar experiences? Know what type of testing/treatment I may require? Know the name of doctors who are supportive of reproductive immunology research? I'd really appreciate any support/advice anyone could give

Thanks,
Jude
 

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Hi Jude. have you seen the FAQ?
Most of the immune docs are listed there.

My hunch would be that you may have a combination of issues going on that would be worth addressing.

by the sounds of it your hormone/thyroid levels may not be right.  So, I would try and get the level 1 tests done by your GP and the normal day 2 (FSH, LH, PRL, E2) and day 21 (P4) tests done.

I don't know what clotting tests you've had done, but I would want tests for genetic thrombophilias - bear in mind that most repro immune docs would want you on clexane before you ovulate.  clexane can only prevent clots, it can't 'bust' clots that are 'starving' your lining before the embryo even starts to implant etc

and, bear in mind that thrombophilias often go hand in hand with immune issues, so if I were you, I would want my immunes tested with the chicago tests (the ones Beer used).

Given your location, you'd probably want to think about seeing Dr G in London or possibly Care in Manchester (maybe Dr Patel).
 

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Discussion Starter · #3 ·
Wow, thanks so much. I am making copious notes from the FAQs and will be ringing my consultant on Monday to see which tests I've already had.
I really appreciate your advice and am in awe and amazed at your knowledge/expertise. Thanks again,
Jude
 

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Jude,

sorry you been having such a rough time  ^hugme^

I had a few miscarriages and a blighted ovum before I read Dr Alan Beers book and went to see Dr Gorgy for immune testing and treatment. I had a right concoction of drugs including asprin and clexane and still had pre-eclampsia/eclampsia and my baby was born 12 weeks early.

I am hoping to have another baby and all I have been told to do is increase my dose of asprin. I was on 75mg before, I have been told to take regular strength asprin and just have the same drugs that I had before, though they would monitor me more closely.

I would highly recommend that you get immune testing done, maybe if there are issues you can resolve them or at least suppress them long enough to sustain a pregnancy.

I've not heard of any Dr at Nottingham Spire being trained by Dr Beer, who is that? You dont mean Dr George Ndukwe who works at Care Nottingham do you? He follows alot of Dr Beers protocols and does the "Chicago" immune tests.

Good luck

Cozy
:)
 

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Discussion Starter · #5 ·
Thanks Cozy,

It's great to hear from someone who has had similar experiences to me. I hope your baby is thriving. It's such an emotional roller-coaster having a prem baby, I do sympathize  ^hugme^

Who is this Dr Gorgy? I've seen his name mentioned on several things - is he based in London? I think it is Dr George Ndukwe at Care Nottingham that I need to see. I'm just trying to find out from my NHS consultant what tests I've already had.

Was all your testing and then drug concotion very expensive? I'm prepared to pay whatever it costs but forewarned is forearmed and all that!

Thanks for your response,

Jude x
 

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Hi Jude,

Yes Dr Gorgy is in London, he is at the Fertility and Gynaecology Academy on Wimpole St. There are quite a few threads about. LOADS of us use him and have been succesful with his treatment plan, though most of us use him for our immune treatment and then cycle elsewhere.

For testing and consultation I paid £1800 with Dr G. He does comprehensive testing, moreso than Care. Dr G tells you what tests he thinks you need when you go and see him and they can range from about £1300 - £2200. The treatment afterwards depends on your test results and can work out expensive. Care and Dr G have different ways of dealing with things and are both succesful. Not sure how much testing is at Care.

In total for testing, consultations, treatment before and during the pregnancy, I paid approx £7,500, thats without the IVF cycle and includes 2 trips to Athens for LIT and 2 shots of Humira which I dont think Care use.

I will be going back to Dr G as following his protocol was the 1st time I actually managed to get a BFP and have a baby, so while it all worked out expensive, it was money well spent in the end.

Agates FAQ's are very useful reading, as it the Dr Beer book which will make more sense once you have had your test results back, but only if you have the "Chicago" tests done, which both Care and Dr G do.

Good luck with whatever you decide to do, it is all a bit of a minefield but can be so worth it all in the end.

Cozy
:)
 

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Discussion Starter · #7 ·
Thanks, really useful information.
Did you have to wait long to get an appointment with Dr Gorgy? ANd how often do you have to see him? Would it be worth me trying to see him or would the distance be a problem?- I'm in Manchester.
I really appreciate all your help,
Jude  :)
 

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Jude

there is a lot of info about appts with Gorgy etc in the FAQ.
he doesn't tend to have a long waiting list.
most of us prefer to have our first appointments with him face to face, but once you'd got to know him, its pretty easy to do everything by phone.
if you look in the FAQ under T - that'd give you an idea of how often you'd need to speak to/see him
 

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Jude,

you can get appts pretty quick. You dont need to see him that often. Once you and your DH have been to see him and had the tests, the results can be discussed over the phone, though he charges the same for a phone consultation as he does to see him.

Travelling wise, train from M/cr to Euston very easy and his clinic is about 20 mins walk from the station or 5 mins in a taxi.

If you need treatment, you can go and see him and get your prescription or you can have it sent to you. You can have Intralipids and IVIg drips done at your home with Healthcare at Home, Dr G will fax them a prescription - though he prefers you go there and have it done, but if say you live a few hours away and cant keep coming down he will let HCAH  do it for you and they are cheaper, which is always a bonus.

You will poss have to go down to London to have occasional retests done to make sure the medication is working, but another way of doing this is paying Dr G for the tests and getting them to send you the blood bottles. You can then get the blood drawn yourself at your GP if you can, then take the phials of blood to the TDL lab at Salford Quays. They then send it to the TDL lab in London (which is where you would go if you went to London to have the tests done), they then send it to the lab in Chicago and the results go back to Dr G.

If you go and see Dr G for testing/treatment, where would you do your IVF cycle?

Cozy
:)

 

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Hello ladies Im so glad or this thread

JudeManchester I have some good news.  Ive just phoned Dr Gorgy this morning and his secretary told me that she can give me an appointment next week.  Very quick but I dont want to be rushed. 
Do uwant their number?
She did not tell me the axact price but mentioned that it will be over £1000.  Im ok with this as Im fed up with three IVF's and nothing to show for it.  She has taken my email address and will email a breakdown of all costs.  She also said we dont need to cycle with them which Im happy with as we want to go Capetown this spring.

Cozy  Do u remember what Dr G tested for that £1800! Waal, lots of money but worth it.  Do u know if they do the hidden chlamydia test too? 
 

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Betty,

Yes Dr G does do the hidden chlamydia test.

The tests that I had done were NK assay with IVIg and Intralipids, LAD, Factor V, Factor II, MTHFR, TH1:Th2 cytokines, DQ Alpha Genotype (for me and DH), Karyotyping. Quantiferon TB gold test. I think that was it, there may have been more. He tests for everything he thinks may cause problems.

Cozy
:)
 

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Cozy thank you so much.  I really want the hidden c done.  Still  waiting for email from his secretary  ^hugme^
 

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Ladies just wondering what you think about this cost?  Has anyone done it cheeaper anywhere?  This is with  Mr G.
Im not sure if they are testing for hidden C with this qoute.
  As requested, here is the cost of the immune tests:

7RF Leukocyte Antibody Detection (Male & Female)    £210
10RF HLA DQ Alpha Antigens (Male & Female)    £210
FGA4 NK Assay Panel    £465
FGA5 NK Assay FOLLOW-UP Panel    £325
FGA6 TH1/TH2 Cytokine Ratio    £340
FGA9 NK Assay/Endometrial biopsy (results take up to 3 weeks)    £350
F25M (Gene mutation)    £250
(Note: The cost of FGA4&FGA6 if you do them together is £700)
*All immune tests results take up to 2 weeks to arrive, so please advise patients to contact the clinic in two weeks


The initial consultation fee is £150, and the follow up consultation fee is £120.

Regards, Jessica
 

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there is no C test in those quotes. 
bear in mind that most ladies prefer to wait and see the results of their cytokines before deciding to have the biopsy as its uncomfortable and isn't necessary if you decide you are going to have humira anyway because of high cytokines (its the same treatment for uterine NKs and for high TNFa cytokine)

I think for the most part, Care charge slighly more than this, and ARGC slightly less - but to go with either of them, you'd have to decide to do your IVF with them.  the only way to get these tests much cheaper is to send bloods direct to RFU yourself - but then you'd still need to see a consultant to decipher them/prescribe you the drugs you need.
 

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I didnt think I would need a biospy as I has a hysteroscopy in November 2010.  A saving of £350 already sounds fab.  Just read ur frequently asked and most of my questions are answered.  Thank you for setting that up, very informative.

What im asking my self now is karyopracting sp the same as chromosone abnormalities or D ALPHA antigen?  :-\
 

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Discussion Starter · #16 ·
Cozy,

Am looking into an appointment with Dr Gorgy and also Dr George at Nottingham Care who are both reproductive immunologists and weighing up waiting times, costs, distance and tests that they do. I've had quite a lot of tests done already - Factor V, Antiphospholipids, bacterial tests, both me and DH were tested - was given an appointment with my NHS consultant to discuss all this on 31.1.11 and wont have all my results of Level 1 tests until then - it's so frustrating when you want everything to be happening immediately.

I'm not planning on having IVF unless a doctor recommends it. I've been pregnant 4 times naturally (only one child to show for it) although it's not happened since my last miscarriage in July  :(
Hoping it will work naturally if I'm treated right for immunology difficulties as I know IVF can be even more stressful.

Thanks for all your help and advice  ^hugme^
 

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Jude,

good luck  ^hugme^

You wont be able to have just treatment at Care but you can with Dr Gorgy. A friend of mine saw Dr G and tried naturally and she now has a 4 month old baby, so it can work.

The tests that Dr G will do are alot more comprhensive than the ones you have had done and you could still go and see either of them without having those test results back, they wont make any difference to what tests he recommends you have.

Cozy
:)
 

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bettyboop: no.  have a look under K for karyotype and D for DQa.  your karyotype is the major structure of your chromosomes (the structures inside the nucleii of all your cells which contain your dna - the genetic information for coding all your proteins (most important stuff in the body is made from proteins)).  your DQa is just one of the surface protein markers on the outside of most of your body cells - its one of the mechanisms your body uses to help recognise cells. 

So they are similar, in that your karyotype and your DQa are both fixed before you are born - but one is a 'genetic instruction manual for making you' and the other is like a 'flag' that is stuck on the outside of your cells so that your body knows that they are yours.

If there are errors in your karyotype it means that you or your partner might always struggle to have a healthy baby, or that you might need PGD to do it. 

If your DQa is very similar to your partners, it might mean that your immune system is overly aggressive to embryos made with your DH.

hope this helps

A x


PS Dr N definitely did use to help ladies who were TTC naturally - although, the ladies who were on that programme seemed to get an 'immunes-lite' type approach compared to Dr G... not sure if he still does immunes for TTC naturally or not.
 

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Discussion Starter · #19 ·
That settles it then, I'll get in touch with Dr Gorgy and try to get to London asap.

Thanks everyone
Jude  ^reiki^
 

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thank you Agate. U really should be a doctor.  Well explained ^hugme^

Judemanchester my appointment is done for the 9th feb  :) . Goodluck with yours x
 
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