Topic: What clinics offer tests/treatments for recurrent miscarriages?

I recently had a miscarriage (at 6 weeks) after falling pregnant naturally (well with help of acupuncture as I have PCO). It's my 2nd miscarriage - first one Sept 07 at 8 weeks, natural pregnancy. I have been a patient at Concept for 2.5 yrs, and had 1 failed IVF late last yr. This year I decided to take a break from western medicine hence the acu; it worked on 4th cycle.  But now, back to square one.
My question is, do you know of any FS/Clinics in Perth that offer testing and treatment for immune disorders, antibodies etc? I am unhappy Concept did nothing, and when I recently quizzed my FS he said he doesn't believe in it, and besides, there's nothing I'd be able to do about it if something came up in the results. I was a bit miffed so I am now shopping around.
I've been reading Dr Beer's book "Is your body baby friendly?". I am reluctant to believe that my miscarriages are just "bad luck", especially since my mum had so may miscarriages also. Looking back, I am also disappointed that my FS put me on Clomid without doing any further tests on me (my PCO was diagnosed by my GP).
Thanks.

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi CB,

To go through one miscarriage must be terribly upsetting and then to go through another be devastating. Re: assessments for recurrent miscarriage ALL fertility clinics can offer a range of tests however if you are after specific tests for assessment and treatment of potential immune disorders (i.e. natural killer cells) then it appears complex. If you were in Sydney the recommendation would be easy - Dr. Gavin Sacks - IVF Australia who has pioneered research into Reproductive Immunology (including natural killer cell testing and prednisolone). When I've explored this issue with various FS clinics in Perth there appears ambivalence in assessment of NK testing and I have been told that there is no good evidence that treatment with prednisolone increases retention of pregnancy.

Whilst your doctor may not do the NK cell assessment there are other things that can be readily investigated so I suggest go back for further discussion. Ultimately if you do not feel reassured then a second opinion or different clinic may be required. Dr. Lucy Williams, the Medical Director of Concept Fertility Centre is expert in these matters.

Also to help deal with some of the emotional aspects of your losses make sure you contact the counsellors at Concept - they can offer you support or link you into community support sevices.

Iolanda

Re: What clinics offer tests/treatments for recurrent miscarriages?

Thanks Iolanda, yes I read about Dr Sacks. I wish the Perth clinics were more open to those ideas! 
I think the Concept clinic in general is great, I'm just disappointed in my FS there. He didn't seem to be interested in doing any tests on me when I asked him about it a few weeks ago after my 2nd miscarriage. I'm ready for a 2nd opinion from another FS, but it would probably be awkward to stay at Concept but change doctors. Do you hear of anyone else doing this?
Well, if you hear of any clinics warming to immunology testing, please post and let us know!
Thanks for the advice about the counsellors also.
CB

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi CB,

I spent some time with different doctors from different clinics today and again NK cells doesn't seem to rate highly on the assessment regime - there was however agreement that with repeat miscarriage there are a range of  blood tests to check a number of things (e.g. thrombophilia, karyotypes etc)
RE: getting a second opinion from Concept's own doctor list - this does happen and does not impede your treatment in any way - so you don't have to feel awkward. Your decision to get a second opinion from either a Concept doctor or FS from another clinic is your perogative and should be respected.

Iolanda

Re: What clinics offer tests/treatments for recurrent miscarriages?

Thanks Iolanda, that is very helpful

Re: What clinics offer tests/treatments for recurrent miscarriages?

For general reading on this area

http://repro-med.net/repro-med-site2/

Admin

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi CB,

I have also read Dr Beer's book - it's fantastic!  In terms of reproductive immunology, very frustrating for us out here in the land of "nobody's listening".  I've been through 3 Perth clinics and it's the same every time! 

If you haven't already caught up with the following information, I hope this helps:

Dr Gamal Matthias in Sydney, trained under Dr Beer.  Tel:  02 9709 4700
You can arrange a telephone consultation and you don't require a referral.

Go to :

http://health.dir.groups.yahoo.com/grou … &slk=3

Become a member and then you will be able to communiate with thousands of people all ovre the world in the same boat and read lots of really good info from the "Files" pertaining to reproductive immunology.

Best wishes

Re: What clinics offer tests/treatments for recurrent miscarriages?

Sorry, previous link to yahoo groups didn't work.

Try this one:

http://health.dir.groups.yahoo.com/grou … gysupport/

Re: What clinics offer tests/treatments for recurrent miscarriages?

Thanks, I'll take a look. Book is brilliant, though also a little daunting.

Iolanda
I had an appt with another specialist yesterday and tested the water by mentioning 'Colorado Protocol' and prednisolone........go a fairly abrupt no. Are you aware of any clinics/specialists that may be more open to this?

Thanks
CB

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi CB,

I did something very similar to the Colorado at Hollywood and used Prednisolone and Cardiprin and got  BFP but lost that one at 8 weeks.  However, they were not really receptive to my ideas about reproductive immunology and I moved to Pivet.  It took a long time to get them to take any interest there as well, but eventually got to do my protocol and added Clexane as well, but unfortunately, no BFP.  I then read Dr Beer's book and found Dr Matthias.

Dr Matthias will give you a telephone consultation from Sydney (no referral required) and based on the history/details you provide him, he will send you for all the immunological testing that the doctors here don't test.  As it turns out, I need to do at least another 4 tests that will have to be done in Chicago so I'm off to Sydney next week to give blood and have endometrial biopsy because the blood samples need to be in the US within a certain time frame and couriers from WA can't help in that regard.  However, I've spoken with other Perth girls who were able to do their tests here and didn't have to go to Sydney.  After unsuccessful IVF, and/or successful IVF followed by miscarriages, they conceived naturally with the help of Dr Matthias (and Dr Beer's protocols).  If you ring his office, ask for the forms to be sent to you and then have a chat with Dr Matthias, it will all make a lot more sense and you can still do your IVF in Perth, if required.

Good luck.

Re: What clinics offer tests/treatments for recurrent miscarriages?

That's fascinating, thanks for letting me know. Good luck in Sydney, and I hope it turns up something that can be fixed. I recently had another miscarriage (so that's the 'magic' number 3 now), and I apparently have to wait until after the next normal cycle to have some further tests done (but it's only for blood clotting and karotyping, not immunological).  So frustrating, it's like an obstacle course we have to travel through.

So, those initial tests that Dr Matthias ordered, did you have them through Pivet, or did you just go straight to a pathologist here? Does your doctor at Pivet have any trouble with you also consulting Dr Matthias?
I've also been considering visiting Dr Sacks in Sydney (another Dr Beer follower) so I can have the immunological tests done also; he can do the NK cell testing, but he doesn't do phone consults. So, thanks again for letting me know about Dr Matthias.

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi CB,

Yes I can confirm with parent2b that Hollywood Fertility Centre does the Colorado technique - I specifically spoke to Dr. Simon Turner who indicated he could do the protoocol.

Good luck
Iolanda

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi CB,

So sorry to hear of your miscarriages and yes, I hear you when you talk of frustration, believe me!

To answer your questions, I haven’t had the tests done yet and no, cannot do them through my clinic.  As I understand it, there are two options:  A- have samples collected at a collection centre here and then package them up and send them by courier (Dr Matthias’ office can advise all details) to Sydney; or B – go to Sydney and have them done there.  I’m still learning about this at the moment so I don’t have all the answers yet. 

As I understand it, some other Perth girls have been able to do blood tests here without the need for couriers or trips to Sydney because they were not required to do certain tests which can only be done in Chicago.  Apparently it depends on certain immune ‘markers’ which Dr Matthias will be able to determine based on the information you provide when you fill in the questionnaire and talk to him on the phone.

Tests I’m having done in Chicago include HLA-DQ Alleles, Leukocyte Antibody Detection Panel (LAD), NK Assay (full panel) and TH1/TH2 Cytokine Ratio.  You will no doubt recognise these from Dr Beer’s book.  Apparently these tests are highly specialised, can’t be carried out in Australia, and the interpretation of results and any possible recommendations may only be carried out by Dr Matthias or Beer Centre physicians. 

My clinic is aware of what I’m doing and that seems ok.  At this stage I’m only trying to find out what the true picture is in terms of my reproductive immunology and if something interesting comes out of this I think they will be interested to know.  I think we (frustrated IVF patients) have been trying to get our IVF doctors to do all things possible and know all the answers but I realise now, we can’t expect them to be reproductive immunologists as well!  As I understand it, some girls have discussed their immunology treatment with their IVF doctors and others haven’t.  Finding out what your personal immunological profile is and treating that accordingly, is a separate matter I think.  So my understanding is, you can go ahead with whatever IVF protocols you decide to do in future as per normal, because the two treatments don’t interfere with each other.  I’m not sure I’m articulating well enough here… maybe Iolanda can help!  My point is, Dr Matthias will treat your immunological issues (if you have any) and your IVF doctor will do his/her job as well, but hopefully having been given immunological treatment already, you will not only conceive, but also stay pregnant.  Hope that makes sense.

It’s interesting to note Dr Sacks follows the Beer Centre.  As I understand it, he is also an IVF doctor, so I guess you get both treatments via him.  This might mean doing any future IVF treatment in Sydney though.  Would that be right Iolanda?  I’d love to know what the options are, if you could please comment.  If that IS the case CB, then I guess if you go with Dr Matthias you can still carry out your IVF treatment in Perth. 

In terms of doctors in Perth who are more ‘open’ to other options, I did read online that Dr Chapple at Fertility North thinks outside the square and is very open to other suggestions, so you may like to try him.  I haven’t been to Fertility North myself, so I can’t comment personally, but thought I’d share what I found online.

I hope the above helps.  Sounds to me like you’re on the right track.  Best wishes and good luck.

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi ladies,

I am new to posting but here goes.  I hope this gets through to you as it is now March 2011.  I just wanted to find out if the biopsy and blood tests for Dr Matthias can be done in Perth?  I have managed to get into seeing Dr Sacks later this month in Sydney, but I think our pref is with Dr Matthias, given he seems to offer a wider range of protocols, and we are already with Fert North doing IVF and FET's.

Brief history - TTC for 8years, with not one confirmed preg:-(   I am nearly 37yo.
On paper everything is good with darling husband, and all levels and egg quality are fine for me.  Implantation seems to be the big culprit.  I have Hashimotos, and also ME/CFS, so definitely a heightened immune system, so no surprise our little angels are not surviving.  We have 6 grade 1 emb's left frozen and now want to explore what Dr Sacks and Dr Matthias have to suggest, before going back to use our precious emb's.

Just trying to decide who to ask first.... hopefully no toes are stepped on if we ask both for an opinion of what protocol they suggest.  It is so difficult being in Perth, and obviously trying to minimize costs of travelling interstate, but at the same time, getting the best level of care.

CB/parent2b ... how have you both been going...as it has been a few months?  Any tips on how to proceed with either of the doctors?

Thank you so much to everyone for their posts.

H x

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Heather,

I am new to posting too so here I go. I have been TTC for just over four years now with 6 failed IVF attempts and are about to embark on a new cycle of IVF.  Through a laparascopy I have discovered that I have one blocked tube and implantation seems to be my main issue. Like you, Heather, on paper everything is good with my husband. 

My husband and I recently went to Sydney to meet Dr Gavin Sacks and had the immunological testing completed. To make a long story short it turns out that the biopsy of film showed that I have a higher than average level of natural killer cells with a higher level of CD57 cells in my uterus - still trying to figure out exactly what that means however he said he would treat me with a mind form of immune therapy if I decided to do IVF with him (20mg of clexane). My blood test for NK cells was normal.

Due to the expense of traveling to Sydney I have arranged a phone consultation with Dr Matthias this Thursday to see what kind of protocol he would approach for me. I figured that once I receive both lots of information I will make an informed decision and go with my heart with whose protocol I believe will be best for me.  I would be curious to know if anyone out there would recommend one doctor over the other and why? And what protocols each of these doctors use.

It should be interesting to see what Dr Matthias says. I will keep you posted.

Thanks for your time,
Angel

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Heather,

It's always a dilemma whether to go to expert A vs expert B - in the field of miscarriage Dr Sacks and Matthias options are both win win options.

Re: Bloods and biopsy tests - Dr. Sacks/Matthias offices can advise what bloods are required and these can probably be completed by your current FS at Fertility North. Re: biopsy - speak to Dr. Chapple the Medical Director of Fertility North as he will advise when/if it can be completed before your Sydney appointment as usually the biopsy is done at a particular time of your cycle. As it stands you mentioned that you are already scheduled to see Dr. Sacks - you may be able to pair up the biopsy in Sydney at the same time.

Best of luck,
Iolanda

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Iolanda - thanks for your reply.  It is nice to know that we'll be in capable hands with either Dr S or Dr M.  With regards to the biopsy....I am actually booked in for blood tests and the endo biopsy on the day of my consult with Dr S.  And yes, it is in the latter part of my cycle (Day 21 to 26).

As all us girls in the situation of long-term infertility understand....time is of the essense....and this is a costly exercise.  This is one of the reasons we were hoping that a phone consult with Dr M would come up earlier this month.  I have heard that some of his testing is done at St John of God for us Perth-girls.  Can anyone confirm this? This would give us the option of not having to travel to Sydney at this stage.

Anyway, given we have put IVF/FET's on hold, we want to move forward with testing and consults as soon as possible, and I imagine the testing done by both doctors is similar if not the same, and as you say...cycle time specific.  So barring a miracle cancellation with Dr M, we will go ahead with seeing Dr S first for testing and opinion, and then speak to Dr M as soon as possible afterwards for his opinion. Similar to Angel....

Hi Angel - so pleased to receive your reply too.  It is a relief knowing someone else is going through similar decision-making at the same time as us.  I hope you don't mind me following in your footsteps so to speak as you are doing everything a little ahead of me.  Happy to bounce situations between us:).

Are you living in Syd or Perth or elsewhere?  Do you mind me asking a few qu's regarding your appt with Dr S?  I need to be a prepared as possible as my Darling Husband will not be able to join me on the trip.  Eeek:-).  Here goes.... Did you do bloodtests in the morning of the consult, and were they at the clinic or somewhere else? How long was your consult with Dr S? Did he do the biopsy during the consult?  Did it hurt? Was Dr S open to treating you with immune therapy/clexane remotely; that is, was he open to working alongside with your FS/IVF clinic, or did he want you to do a new IVF cycle with him? How long did it take to get all your results?

I am so excited to hear how your appointment goes with Dr M later this week.  And it is great that you have results from testing to share with him. I will be thinking of you.

Interesting to see your blood test for NK cells was normal...so is mine, so it just shows how important the biopsy is for info gathering, and of course, any extra bloodtests done.
For me, I really think this may be the missing link, and although it will probably involve indulging a new drug protocol (my body prefers a holistic approach), if it is the only way to bring our darling babies into the world, then I am going to roll with it as best I can.

Looking forward to chatting soon.  Wishing you and your husband all the best!!  I so agree with getting two opinions, and then deciding on the best fit.  I have heard success stories for both doctors so it is very confusing which way to go without speaking to both firsthand. Well done. Take care:).

18 (edited by Angel 12th-Mar-2011 18:47:46)

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Heather,

Hi there, so sorry to have taken a few days to reply. I do not mind you asking me any questions at all. My pleasure so I here I go:

When I went to see Dr S I did blood tests at a hospital in the morning and then went to Bondi for a consultation with Dr S where he did a endo biopsy and a swab for ureaplasma and mycoplasma (a friend of mine who has seen Dr S suggested I ask for the swab which I think basically tests whether you have had chlamydia which I didn't think that I had but she told me you can have it without even knowing it). I tested negative for that but apparently that can be a cause for infertility.  In addition to that Dr S asked if we were staying another day which we were so he sent me for more blood tests the following morning, which had several locations that you could go to.

As for the length of the consult - I would say it was about a half hour. I had my list of questions and he happily answered every one. And biopsy hurt a little - not too bad - I was a little crampy afterwards.

It took a couple of weeks for us to receive all of our tests results. In Dr S' cover letter he stated that he was happy to assist us in our next IVF cycle or he welcomed us taking the info to our IVF specialist on the Gold Coast. For me he didn't feel that I should need prednisolone but recommended that I take clexane.

Yes I am looking very forward to speaking to Dr M. From what I have read it sounds like both doctors are extremely experienced with immunological issues so I am sure whomever we go with will be great.

A friend of mine who tried for 10 years to conceive is about to give birth any second and she went through ivf with Dr S who treated her with prednisolone and clexane.  She kept on insisting that there must be a reason why she wasn't getting pregnant and she was right. Her biopsy was clear however her blood had NK cells.

Well, Heather, please feel free to ask me anymore questions. I will continue to keep you posted with my journey as it is almost decision time which I will be relieved once I have a definite plan.

All the best!!

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Angel,

All the best for your phone appt with Dr M today.  I do hope you and DH get some interesting feedback, and as you say, both doctors seem to be very experienced in this arena, so we can't go wrong.

Can I ask if you and your husband have done Karyotype testing (chromosomal analysis) yet? And do you mind me asking the sorts of blood tests Dr Sacks got you to do the next morning?  I will be staying two nights in Sydney and just trying to work out how much of my "Medical History file and past blood-tests" to lug over there - LOL. At least I will have time to do extra tests the next morning if he needs me to - thanks for the tip.

We'll talk more after your DR M appt but I have read some tips from other sites on Clexane injections, and how best to avoid the terrible bruising.  Anyway, will search out again if it comes to that:).

I had the Ureaplasma/Mycoplasma swab done through Francesca Naish's clinic in Sydney (Natural Fertility Management), and found that to be clear as well.  It is all about elimination of possible causes.

Exciting stuff, looks like I will probably get to speak to Dr G very soon as well.  Yippee!  Just a pity that I won't have a lot of the testing done yet so it may be harder for him to give a complete opinion at this stage, but at least the ball will be rolling.

Take care, Hx

20 (edited by Angel 12th-Mar-2011 18:49:42)

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Heather,

Thanks for your message. Dr M was lovely today and very generous with his time. I will try to remember everything.

Firstly, after talking about my history Dr M thought in order to be successful with IVF I should have IVF via ultrasound – this is because Dr S had suggested this as well which was great to have them both agree on one thing.

Next I asked Dr M about my NK cells. He said I definitely have immunological issues. Unfortunately he said that Dr S interprets the info differently than him so ideally he would like me to have another biopsy done with him.  AAhhh!  After asking him several times about whether it was really necessary to have another biopsy he said: ‘send me your laparascopy and hysteroscopy results as well as get the blood tests I will post out to you today, do them as soon as possible and then we will evaluate whether or not I think you will have to have another biopsy in about two weeks on another phone consult.’

Also I told him that if he was providing me the immunological protocol that I would like him to do our IVF too. He said at this stage he is trying to focus mainly on the immunological stuff and doesn’t have the time to focus on both the immunological and IVF.  So once he has all the info he will give us the protocol and do whatever he has to do from his end and then set us up with our own IVF doctor to do the rest.
So that sums it up.  Dr M also stated that he is closely affiliated with Dr Beers clinic in Chicago and depending on the results sometimes sends blood tests/biopsy to be tested in the States. Have you come across the book, Is your Body Baby Friendly? By Dr Alan Beers? It is quite interesting and just shows how complicated immunological issues can be. Anyways, Dr M stated that they do everything in that book eg IVIG, LIT etc

Now as for your questions sorry I have rambled on. No we have not had any Karyotype testing done and I don’t believe Dr M and I spoke of it today so I will mention that in two weeks time. And yes I would appreciate any tips on Clexane injections if it comes to that who knows. And I believe the blood tests I had the next day were to do with glucose as I had to fast?!?

Well H, I am going to sleep on it tonight – up until today we were pretty keen on starting IVF with Dr S immediately however now I am just wondering if it might be worth waiting another month and that way perhaps we will have more info!!

Well I am off to bed before my brain explodes!  All in all I think it will be good to get another opinion.
One step closer ...
Talk to you soon, good night,
Angel ox

21 (edited by Heather 12th-Mar-2011 08:51:22)

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Angel,

Well done on the phone interview.  It is nice to get some consistency in views (ie: confirming immuno issues), but hard when even more tests and consults are required, not to mention the $$ and travel involved. 

I managed to have a phone consult with Dr M last night as well.  Unfortunately, because I have not had many of the immuno tests done yet by Dr S, he was unable to provide much insight yet.  He did give some interesting info on my Group B Strep situation (diagnosed by doing cervical swab).  He suggested a high dose of antibiotics (5 day course), starting just before a transfer.  From what I have been told, Group B Strep is normally ignored until delivery, at which time high dose antibiotics are administered. I have been concerned about GBS for a while given implications if transferred to a newborn; but I have also read about possible links with miscarriage and infertility.....interesting. 

Anyway, Dr M did raise the point with me as well about having different views/protocols, and having had different training to Dr S.  I guess they understand that many patients will be seeking opinions from both of them, and they endeavour to separate themselves and try not to confuse us.  Interesting the Dr M wants to redo the biopsy....eeek.  I hope he doesn't want to do that with me too....especially as I will be there already in a couple of weeks time. Uuggghh.  I hear you!  I have booked another phone appt with Dr M about 2 weeks after seeing Dr S .  Hopefully all the results will be back by then.

Oh, and we are hopefully getting the full Karyotype test requests from our FS today, so we can do those asap.  Results should be available 2-3 weeks time.  Dr M agreed this was a good idea to check.

With regards to the book by Alan E Beer - yes, I was just searching to get a copy from the library or probably going to buy one today.  Given we will probably be doing some of the protocols in due course, I think it would be a good idea to have a copy.  Thanks for the tip.

Clexane injections - have searched everywhere for the post that I read...to no avail.  So here goes the memory and maybe someone else can find the post.  This lady had been getting her injections done at the clinic but they were charging more (maybe in the US), so her husband was now doing them (cheaper)...she couldn't look at the needle.  She found it best to do them at night, in the upper leg/thigh, at 90 degrees (not 45degs), make sure to wipe any liquid off the end of the needle with alcohol swab before inserting quickly and plunging slowly; waiting 5 secs or more before withdrawing needle to avoid leakage.  Then she used to lie on the couch.  She said by doing this, she was getting little if no bruising. Hope my memory has done this justice.
Clarification - I am not on Clexane myself, so I would suggest speaking to the Nurses at the clinic for advice, and there are quite a lot of "personal experiences" and suggestions detailed on fertility sites.  Basically, the experience differs for everyone:).  Good luck.

I have exhausted my keyboard now so must sign off.  Wish everyone all the best, especially you Angel.  Talk soon, Hx

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi Heather!

That is brilliant news that you were able to speak to Dr M as well. It will be great to hear what both drs have to say in the next few weeks. I guess for both of us now there is going to be a bit of waiting going on before we can do anything else eh? When do you head off to Sydney? I wish you all of the best. Make sure you write down every single question you may have because there is nothing worse then walking out of an appt and forgetting to ask something.

Thanks for telling me about the Group Strep B - I too, have it and I didn't realize that it required such treatment.  I will def bring that up with both drs as well as the Karyotype tests - how is that tested?

Well H, any new info I will send your way. Thanks for all of your tips.  Much much appreciated.

TTYS, Angel ox

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hi ladies,

Sorry I have been unavailable for a while, but it’s great to see there is plenty of action happening out there!  I know there has been a lot of conversation in the last week, but I would still like to respond to some of the questions/comments, for the other people who are reading at this level.  Below, I have quoted your questions/comments and responded:

“I just wanted to find out if the biopsy and blood tests for Dr Matthias can be done in Perth?”

Heather,

The type and number of blood tests required for you personally, will be determined by Dr M during your initial telephone consultation.  Some can be done in Perth.  I guess the level of immune markers each person has, really determines the amount of further testing required.  The Perth girls I spoke to who were able to just do blood tests in Perth (and not fly to Sydney for a biopsy), both conceived.  In my case however, it is a little more difficult.

I had already done everything here that I could, in terms of blood tests.  I provided Dr M with copies of my test results and filled in his questionnaire.  Then, during my telephone consultation, he said I have "many of the markers" which suggest I have immune issues.  He asked me to send blood samples to Chicago because these particular tests cannot be done in Australia (that is my understanding).  I don’t know what testing Dr Sacks does, because I haven’t consulted him.  Having read Dr Beer’s book though, I am happy with the knowledge Dr Matthias is on the same page as Dr Beer. 

Dr M advised me the biopsy could not be done in Perth because it would go via pathology first and they would treat it in such a way that would render it impossible for him to do his specialised testing (hence my trip to Sydney, which was only an overnighter).

“Any tips on how to proceed with either of the doctors?”
   
For others reading this post, please note:  you do not have to go to Sydney to talk to Dr Matthias.  You have the phone consultation first.  If you are able to do blood tests in Perth and provide him with that information, depending on the results, you may not need to go to Sydney at all.  In my case however, it is a little more difficult, which is why I had to send blood to Chicago for testing.  However, I did that before I flew to Sydney for a biopsy and hysteroscopy with Dr M.  From everything I’ve read online so far from people who have visited Dr Sacks, you do have to go to Sydney for tests and consultation with him.

“Dr. Sacks/Matthias offices can advise what bloods are required and these can probably be completed by your current FS at Fertility North. Re: biopsy - speak to Dr. Chapple the Medical Director of Fertility North as he will advise when/if it can be completed before your Sydney appointment as usually the biopsy is done at a particular time of your cycle.”

Iolanda,

I respectfully wish to advise (and I am sorry to say) that my personal experience with clinics I have been to in Perth (which do not include Fertility North) has been that the doctors have been unwilling to carry out extensive blood testing in terms of immune issues.  So I did the research myself, went to a GP, gave him a long list, and went to Clinipath and got the tests done (although they had to make a few phone calls because I was obviously asking for unusual things!).  When I showed them to my IVF doctor and my GP, they both said everything was 'fine'.  For example,  I have tested positive on numerous occasions for ANA (among other things) and each time, the local doctors told me it didn't mean anything because many people test positive at the same level and therefore my level was not considered an issue.  Unfortunately, not all those people are trying to conceive.  This is why patients like us, need doctors like Matthias and Sacks, because they understand immunology and they have a very different perspective on specific test results.  The tests I researched and carried out, provided DR M with a lot of information which was obviously enough for him to decide I needed to send blood samples to Chicago for further testing.  It is very unfortunate we don't have anybody in Perth who we can go to for the same information and support and I am highly appreciative of Dr Matthias, after all I have been through. 

“CB/parent2b ... how have you both been going...as it has been a few months?”

Heather,

It has taken some time to get all the results and I must admit that while it is well worth sending blood samples to Chicago (if required), it wasn't an easy feat.  However, if any of you find after consulting Dr M that you need to do that, please contact me via this site again and I will be happy to offer some tips and point you in the right direction.  Dr M is very busy and the biopsy needs to be done in the luteal phase of your cycle so getting theatre time booked in was rather tricky and then xmas came along too so that’s why it took a few months overall, to get all my results.

My testing (which you will be able to read about in Dr Beer's book) included:  NK Assay Panel, Leukocyte Antibody Detection (LAD), DQ Alpha and DQ Beta (hubby's blood sample required too) and TH1:TH2 intracellular cytokine ratios. 

Interestingly, my IVF doctor told me some time ago I do NOT have NK cells.  I’m not sure why he thought that.  The main result of my testing is that I have elevated NK cells in my uterus.  This confirmed my suspicions (over the last 4 years at least) that I have implantation issues.  I have high CD56 and CD57 was also high but not as much as CD56.  Dr M was able to detect the uterine NK levels as a result of his biopsy.  Incidentally, he only does a biopsy under anaesthetic.  He also performed a hysteroscopy while I was under, and removed some small polyps.  The whole experience was fine, painless and I was well treated.

The NK Assay Panel (blood test) showed I have a bit of imbalance with CD3 (a little high) in relation to others, but no elevation of NK cells in the blood.

The LAD test result is that only 1 of the 4 was a little low (T cell IgM).

My TH1/TH2 levels are in the normal range, which is good.

The DQ Alpha/Beta testing showed my hubby and I share 1 gene (03) but according to Dr M this only causes a mild issue.

So, my prescribed treatment is IVIG (or immunotherapy) for which I will need to return to Sydney.  Once again, it’s such a shame we cannot get this treatment in Perth.  I will also be taking dexamethasone (because Dr M says it is better for NK cells than Prednisolone), Clexane, antibiotics to cover egg collection and embryo transfer, Caltrate Plus (to help the effects of the steroids) and high dose progesterone.

I know there is no guarantee we will conceive as a result of IVIG therapy, but I'm certainly willing to try and at least this time, we will be in there with a chance.  Actually, I really wish I could have G-CSF injections, but it is my understanding it is currently unavailable in Australia.  So far, we have wasted a lot of time, money and precious eggs, going through IVF cycle after IVF cycle and all the time we were only making the situation worse (see response to Angel, below).  It has also been extremely difficult emotionally and very trying for our marriage.  I would really appreciate it if more IVF doctors would do the research and consult with immunologists and take immunological issues seriously in the fertility area. 

“The biopsy of film showed that I have a higher than average level of natural killer cells with a higher level of CD57 cells in my uterus - still trying to figure out exactly what that means however he said he would treat me with a mind form of immune therapy if I decided to do IVF with him (20mg of clexane). My blood test for NK cells was normal”.

Angel,

We seem to share the elevated uNK cells.  Unfortunately, Prednisolone and Clexane have not been enough for me.  I have used them both in numerous cycles.  I did conceive (ICSI) the very first time we included Prednisolone and Cardiprin, but it has never worked for me since.  I don’t have my book (Is Your Body Baby Friendly) handy at the moment so I can't quote Dr Beer or the exact page in the book, but my understanding is, the NK cells get stronger, the more we try.  So each and every one of those embryo transfers I had since my first pregnancy, just made matters worse.  I guess that's why I now need IVIg and dexamethasone in conjunction with clexane.

I hope by sharing information here, I have been able to help someone else who may be suffering with undiagnosed immune issues.  It is my wish that all Australian IVF clinics will some day soon, carry out all the necessary immune related tests, BEFORE letting anyone embark on an IVF programme. 

Best wishes to all.

Re: What clinics offer tests/treatments for recurrent miscarriages?

Hello Ladies,

Thank you to 2b parents for all of the info you have provided. As I have previously mentioned, I am in the early stages of Dr M's investigative evaluation. I am patiently waiting for the prescriptions for the initial blood tests to come in the mail.  I am eager to get the ball rolling. 2bparents, if you do not mind me asking, having you begun IVF with the IVIg therapy? And if yes, how have you found it? And can you please tell me how long it has taken you from the time you initial spoke to Dr M until starting your IVF with IVIG? I was really hoping to begin another round of IVF in the next 2 months or so. But suppose if Dr M wants to do another biopsy it will most probably be longer than that eh?

I totally agree with you that I wish I underwent all of this testing before I embarked on IVF in the first place and I too, hope we can help others.

Thinking of you all,
Angel

Re: What clinics offer tests/treatments for recurrent miscarriages?

Welcome back parent2b:-)
We so appreciate your experience on this journey, me especially being in Perth as well.  After 8yrs TTC, every month counts and where I can expedite anything that needs to happen, I will.  So all your insights are so valuable, as are Angel's and anyone else who wants to share.

Like Angel, I am curious to know if you have begun your IVF cycle and treatment, and moreso, are you able to do the egg collection, ET's etc in Perth?  You have said the actual IVIG needs to be done in Sydney, but is it just a once-off?  At what point in your treatment/cycle do you do it? Also, regarding the anti-biotics you are taking during egg-collection...did he say what that is for?  I have been told I need to take anti-biotics during ET due to Group B Strep issues.  Of course, we have to realise that everyone's situation is different, but it is nice to hear about some real situations.

Sorry for the overload of questions.  I am so hoping this is going to work for you. Big Hug.

Something that was wonderful....I picked up the referrals from our FS today.  She has been so understanding of my husband and I wishing to progress our journey with further testing and opinions from Dr S and Dr M.  We are very fortunate to be with Fertility North and they have been so compassionate and professional during our long attendance, especially as I have so many compounding health issues to deal with. It also became apparent that we had already had our Karyotype testing done when we first attended the clinic, many moons ago.  All clear, so I guess one less thing to have to check out.  Whew!

Off to Sydney next week, and crossing fingers for smooth travelling, and easy transition of appointments, as I will be doing it on my own...eeek.  Is a dose of panadol suggested before the biopsy with Dr S?

Take care all.  Hx