# testing and next steps



## OneStepAtATime (Sep 14, 2008)

Sorry for the new thread. I couldn't see an obvious one to put this on. 

I'm wondering about miscarriage testing before another IVF. There are various tests they can do, but in the NHS you need to have had 3 miscarriages (or 2 if you have the clinic backing you up) before they'll do them. I don't want to have to go through 3 miscarriages to find out something that could be revealed now. 

I just spoke with the ob/gyn doctor from MFS and after "just" 1 miscarriage he said he would not recommend any testing. At my age 25% of pregnancies miscarry...

God - what a statistic. It's higher than I'd thought. I guess I was 37 when I was pregnant, so was looking at a different rate. 

He said I could get the tests done privately - cost of £900-£1,000. 

He thought it made sense to go for the natural FET next cycle as I'd planned (which of course may not thaw and as there's only one I may have nothing...) and then see how things stand. 

He said there's no indication that I should do the tests- he was 95% sure they'd be normal or negative (looking at implantation and embryo quality I think). But he can't really tell, can he? 

The thing is, I've got the appointment on Tuesday next week at a different clinic (CRM, Coventry) and am now wondering what I'm going to say to them. I had initially made the appointment because of the sperm shortage at MFS and had the idea I'd use them instead of MFS. But if I can import from ESB to MFS then that's not an issue (CRM import from there too). 

The other issue I'd thought to discuss was testing but the MFS doctor just laughed. He was sure they'd do no testing after 1 miscarriage. 

So what am I actually asking them for? It feels like an opportunity, but could be awkward if I'm basically saying that I want treatment elsewhere. I guess I could move to CRM for the next IVF - it's closer to home. But MFS know how I responded last time and will be using that knowledge. Or am I making too much of that - after all, I've got a copy of all my notes, so they can see how I responded to drugs. 

I'm posting this as a general query because these are important matters and I am so feeling that time is running out (especially when he quotes stats like that at me) and so it's important that I make good decisions now. But I'm not clear what direction I should be pushing in. 

And £1000 is not a lot if it saves going through another miscarriage (emotionally as well as the financial side of IVF). 

Any thoughts? 

How can I get the most out of the meeting with the consultant at CRM? 
Do I go for testing?

OneStep


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## suitcase of dreams (Oct 7, 2007)

OneStep,

These are difficult questions and ultimately only you can make the final decision. But for what it's worth, here's my opinion:

If you were only going to CRM because of sperm shortage at MFS, but you are otherwise totally happy with your current clinic, then I'm not sure why you would bother with the CRM appointment. That said, if it's just the price of a consultation, then it may be worth going along, taking your notes, talking through your experiences and asking them what they would propose for you and why. This would give you a second opinion and may throw up some things you have not thought of. 
BUT, I doubt that there is much they would be able to suggest or do differently. You responded well to the drugs, you got good fertilisation rates, good embryos (as evidenced by going to blast and having some to freeze) and you got pregnant - so no major implantation issues. Yes, it ended in miscarriage, but as you say, 1 in 4 do....
My gut feel is they will say it's just bad luck, nothing specific you did or didn't do, and they would recommend the same approach for a 2nd attempt
But if it might put your mind at rest to get a second opinion on next steps then you could just go and have a chat with CRM. I am assuming that's only around £100 for a consultation, so could be money well spent to explore possibly tx options

Re the miscarriage tests - not entirely sure what you mean here - are these pretty much the same as the immune tests? What do they test for? Again my gut feel says these tests won't tell you anything, but then again, you just never know. I guess you have to decide whether you can afford the money for the potential peace of mind it might bring to know there are no obvious underlying issues
Hard part is that even if the tests show no underlying issues, doesn't mean you won't miscarry again. Sorry if that sounds a bit blunt, but trouble is the whole thing is just such a grey area and no one really understands what does/doesn't cause miscarriage

I have a good friend who is only 31, she had 2 miscarriages in quick succession - one at 6 weeks and one at 8 weeks (which went sadly undiscovered until 12 week scan). She then went on to get pregnant immediately the month after the D&C and now has a 9 month old. So presumably tests would have shown no issues for her, she's young, healthy etc etc - and even she suffered two miscarriages which were totally unexplained

I don't suppose I'm helping much here am I? I have become increasingly cynical as my journey progresses - I now believe that there are very few black and white answers, that it's rare to be able to identify an issue and actually treat it with a guarantee of a positive outcome. And much of it seems to be down to luck and whether it's your time or not

The PGD was the first time I felt I was actually getting a scientific answer for me - 6 embryos and all severely chromosomally abnormal - that tells me there is little point carrying on with my eggs - they are unlikely to result in a successful pregnancy. But even then I have a 3-5% chance of finding a good egg...so if I had limitless funds and bottomless perseverance and ability to cope with BFN after BFN I could keep going and hope I was in the 3-5% of people getting lucky.

So I would perhaps ask your consultant/CRM about this - just in terms of getting their opinion on the quality of your embies. But the fact that you had excellent blasts and some to freeze suggests this is not your issue anyway

I'm not sure if I've helped or just muddied the waters further, really wishing you lots of luck in sorting this all out and moving forwards. It's very tough having to accept that there just might not be any answers and you just have to leave a lot of it to fate  

Suitcase
x


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## OneStepAtATime (Sep 14, 2008)

Thank you Suity. You raise a lot of good points. 

The tests I've heard they can do include: 
Thyroid function
Anti Phospholipid Antibodies
Anti Cardiolipin Antibodies
Clotting Profile
Lupus Anticoagulant

Some of the above are blood clotting ones which are treated by aspirin and/or heparin (and I was taking aspirin anyway). 

Plus as you say there are the immune tests which some see as controversial - but Alan Beer (I'm reading "Is your body baby friendly?") makes a good case. 

My consultation at CRM is free. I got a GP referral. You're right that they might not suggest anything different, but it would be good to get a second opinion. 

As you say, a large part of it is luck. 

I guess I just don't want to have several miscarriages believing I'm unlucky or coming up with bad eggs only to find later that some simple measures (like the steroids you had) would have made a difference. 

Thank you again
OneStep


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## suitcase of dreams (Oct 7, 2007)

If CRM consult is free, then definitely go, take all your notes, and ask them what they would do/do differently and why. A second opinion can only help and may throw up something you have not thought of 

Yes, those are the level 1 immune tests, or at least some of them. Guess you could ask about being prescribed clexane without the tests? I was on clexane for my last UK cycle and both Czech ones - before I had any of the immune tests. Both LWC and Reprofit also prescribed steroids without any tests either - so is it worth the £1000 for tests if you can just go on clexane/steroids anyway?

I suppose what I was trying to articulate is that even if you have all the tests, and they diagnose something, and you treat it (with steroids, or clexane, or even ivig/intralipids) there is still no guarantee. There are lots of ladies on the immune thread who get BFN even with all the additional tx....so it's kind of a case of how much do you want to spend on this when at the end of the day, there are just no guarantees

I don't mean that to sound negative (although I am personally perhaps still feeling rather negative despite my best efforts to pick myself up and move on) - just realistic...

I really really hope things work out for you with the FET and then all of this will cease to matter  
Suitcase
x


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## ♥JJ1♥ (Feb 11, 2006)

I have a full panel of test after my miscarriage including extended immune tests at Mr *******'s miscarriage clinic and was diagnosed with raised Natural Killer cells, so pleased that I did then had them repeated time after time (Chicago tests) at ARGC and therapy

L x


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## OneStepAtATime (Sep 14, 2008)

Many thanks Rose, Suity and JJ1. 

I will see with the consultant and clinic but think I may push for steroids and possibly clexane next cycle - perhaps with testing, but maybe without if they'll do it.  

My next topic of obsession is about perhaps freezing ALL the embryos from the next cycle at day 2. Then try a fresh cycle after that. 

I'm not getting younger and if the next fresh cycle did work, that'd be great (and the younger embryos could be used for a sibling), but if I have to have another couple of goes, I'll be heading towards 40 and surely it'd be better to be trying with 38 year old embryos through FET at that stage? Plus if we later find that there is an underlying factor such as immune problems, then I'd at least have some younger embryos to try. 

I've probably not argued that very well, but I hope you can follow the reasoning. 

What would you think about that? 

If frozen at 2 cells they thaw better and could be defrosted in batches.

I don't know how it'd work in terms of %s that are lost in frozen cycles, but looking at the charts for decreasing success with age I'm despairing... and at least I'd have "captured" some at this stage and may find one among that lot that'd be ok later. 

I'd appreciate comments on how sensible that sounds and any pros/cons that I'm missing. 

Thank you!
Best wishes
OneStep


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## RedRose (Feb 17, 2009)

Hi Onestep, 
    I too, got the same answer from my ( female ) GP, of "you've only had one miscarriage".  I realise the cost of testing everyone who has one would be high but I do think there are some basic tests that might put your mind at rest a little.  For me personally I could not bear the thought of losing another baby when there might be something I could have done to prevent it.  I think this would be the point of view of most women, and waiting for 3, I think is just cruel and fails to take into account the devastating effect this has on a woman and her family.  Also, I was 40 when I had my first miscarrriage so I didn't have time to have three before testing.  I know when I saw Mr ******* for NK testing, he mentioned that his NHS trust do testing on women over 37 with 2 consecutive losses, not 3, which seems a little more humane.
    I went after my first loss to the Wessex Fertility Clinic near me in Southampton where I had  miscarriage profile which cost about £300, and tested for anti-phospholipids antibodies, anti-cardiolipin antibodies, MTHFR, a full thrombophilia screen, Factor V Leiden, and lupus anticoagulant and some other things also.  It also included a full blood count which showed raised eosinophils, which are a type of cell which fight allergens and parasites.  As I have allergic asthma and also had had a massive allergic reaction to a hair dye shortly after my m/c I put this down to that.  Neither the Wessex or Mr ******* flagged this up as a sign of immune-related miscarriage, although to be fair Mr. ******* only glanced briefly at my Wessex tests.  They both just advised aspirin and on becoming pregnant again a few months later, I lost my second baby at just 6 weeks.  Again successively quicker losses are a possible sign of immune-related miscarriage.
    On reading the Alan Beer book "Is your Body Baby-Friendly" I discovered that he regards raised eosinophils as a suspicious sign that the immune system has activated against pregnancy.  I will never know if I had had immune treatment for my second pregnancy that baby might have been born.  So my strong advice to you if you do decide to get any testing done, remember that tests are only as useful as the skill and knowledge of the person interpreting them.  These are complex areas, and I think you need to do your own research and not just listen to doctors who may be knowledgeable but not necessarily so.
    At the very least I think your GP should check your thyroid function as this is a well recognized cause of reproductive problems and is easily correctable.  Your thyroid stimulating hormone ( TSH ) should be between 1 and 2, check the actual figures as UK doctors let much higher figures go without treatment ( again this is a cost problem ).  If you do take thyroxine you need to keep your thyroid function monitored during pregnancy as the demands become greater on the body.
    As Suity says, all the tests and treatment in the world don't guarantee a successful pregnancy and don't protect us particularly when we get older from the egg quality issues.  I hope that I don't have any immune issues and that my m/cs were due to chromosomal issues, but it's hard to tell.  I hope to have clexane and steroids as a precaution if I get pregnant again, sorry I don't really know about the embryo questions,
             Best of luck to you with getting some answers, love Rosi.


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## OneStepAtATime (Sep 14, 2008)

Hi
I had a very good meeting with the consultant at CRM Coventry yesterday afternoon. 

He was very understanding and without any pushing at all said he'd arrange for recurrent miscarriage tests to be done (after only the one m/c) - and so that very afternoon I had a scan, swabs and lots of blood tests. Results for most in 7-14 days, longer for the chromosome ones. 

I was staggered and very very happy. If I were 10 years younger, he said it might be ok to say to keep trying and do tests after more miscarriages - but at 38 he said they needed doing now. 

I wrote down what the tests were, but haven't got that with me today. Various ones for thyroid and clotting as far as I could tell. 

I realise there are lots of others (eg immune etc) that he wouldn't do (research results for them aren't evidence-based with control groups taking placebos etc) - but to get anything at this stage for free is great. 

He also answered my many questions - including the one I posted here about the value of freezing everything next IVF. The results for frozen embryos are so much lower that he didn't think it'd be worth it - even if I want to try for a sibling in 2 or 3 years time (provided all goes well and I have the first of course). He said the results for fresh cycles in early forties would be comparable with frozen from now. Since the meeting I've thought about that and wondered whether he was just talking about rates for getting pregnant - but was he taking into account the higher risk of downs etc etc and so would the healthy baby results be comparable. I need to follow that up. 

So I'll have most of the results before the FET. 

I know this isn't going to remove the risk of miscarriage - but it feels good to at least have some of the basic causes of miscarriage looked at now so as to eliminate even some of the risks. 

He would be happy to treat me, he said, but he was very quick to say that they're not in the business of poaching patients and there was absolutely no pressure to move clinics - but all I have to do is ring if I want to. That's very reassuring in case for whatever reason I do want to move (I don't think I will at the moment). 

And it was good to have a scan - the lining is 13mm (I'm day 21) and looking good and there is plenty of activity on the ovaries, so they look good. You don't know how things will be after a m/c etc - so that was reassuring too. 

I had already booked to see Mr ******* in London on 1 June - and am wondering whether to go and have the immune stuff done... Not sure yet. I know MFS will give some steroids anyway without tests, but I was reading up about the side-effects of the steroids (also in Alan Beer's book) and the increased risk of cleft palate etc. I'm not sure whether to try and push for them as a precaution this next time - or whether to try without again. 

Thank you for your comments Rosi. It's very true that tests are only as useful as the skill/knowledge of the person interpreting them. Good luck on your 2ww - I hope this is the one and you get a BFP in the next couple of days!   

OneStep


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## ♥JJ1♥ (Feb 11, 2006)

Onestep great that you have got your tests done, I would see Mr S for peace of mind and weigh up the judgement as he is a NK cell believer and treater.  The risk of cleft palate is so v small, look how many girls take steroids on here and I can't recall a cleft palate.  Plus a cleft palate is treatable condition not that you would wish not 100% health on a child.

I would also take all your results from your tests with you so that you don't repeat them
Lx


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## OneStepAtATime (Sep 14, 2008)

Hi Rose
I'll put the blood tests in a general message in case anyone else is interested. Please excuse spelling- the nurse just read them out:

lupus anticoagulant
HBAIC - haemoglobin test (testing glucose)
TFTs - Thyroid function tests
Anticardiolipin Antibodies
Karyotying

The swabs were for high vaginal something-or-other virus (??) and chlamydia. 

I need to do a bit of googling to see what some of the above are. 
Best
OneStep


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## OneStepAtATime (Sep 14, 2008)

I rang for the results today. The nurse said they were all ok. Which is good 

But when I wanted actual information (which tests, what were the levels - in case they were near the top end or something - plus I want to give them to the clinic) I was told she couldn't give that - I have to have a doctor's appointment. The next one is 24 September!!!!!!! 

I can write for the test results, but that too might take a while.

It's good news that they were ok - so I guess my clotting and thyroid etc are ok as far as the basic tests can tell.

It's also a reminder of the difference between private clinics and NHS!

I have an appointment with Mr ******* on Monday. Part of me feels it's a heck of a lot of money to have more tests. But in comparison with what more IVFs and miscarriages could cost, it's not that much. And at least I can see about immune issues. I emailed the FF pharmacist about Prednisone (which MFS offered to give me without tests) http://www.fertilityfriends.co.uk/forum/index.php?topic=195418.0 and the side effects are even scarier than I'd thought - including depression and other psychological effects, not just the weight gain, insomina etc I was aware of. I really don't want to take it for 13 weeks unless I have to.

I've got scans starting next week at MFS to track me for the natural FET... which I'm guessing may be on about 13 June if all thaws etc ok... let's hope it thaws ok and sticks around. 

Best wishes
OneStep


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## OneStepAtATime (Sep 14, 2008)

Just found interesting interview with Mr ******* about immune testing etc. in case anyone is interested (it lasts about 15 minutes).

http://www.bbc.co.uk/radio4/womanshour/2004_13_mon_02.shtml

OneStep

/links


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## Roo67 (Feb 12, 2007)

Onestep - Were all your tests done on the NHS ? if so you should be able to get a copy of your notes by paying a small fee and filling in lots of paperwork. 
or alternatively ask your GP if they have a copy or are able to get them. 

This happened to me and the receptionist phoned the lab and got them for me - wasn't happy and wanted to know why I was having tests on the NHS if I was going privately for IVF

hope this helps

R x


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## OneStepAtATime (Sep 14, 2008)

Hi

I had my appointment with Dr ******* yesterday. He seemed pleasant and interested. He ordered immune tests and some others (to be honest, it wasn't clear what he'd ordered, but they took stacks of blood and the results will have details of what the tests all were). 

The lab (the blood tests are done round the corner from his clinic) is very efficient and the results will be ready tomorrow. They're emailing them to me, then I get to have a chat with Dr ******* on Monday. 

He explained a bit about the immune tests - I'd read that the blood tests from the body weren't necessarily indicative of the ones in the womb for NK cells. What he said made sense (they test function, so it's not the actual count that's important, and the body's ones are good for that. Actually, the womb ones change every month as the lining comes and goes) - not a very good rendition of what he said I'm afraid. 

He did say that there were further tests he would order if someone had many miscarriages or 3 failed IVFs, so whatever I had was more basic. Seems fair enough to me. And he was able to take the NHS ones I had done into account on the basis that they were "normal", except the thyroid ones, where he wanted the exact types of tests and I couldn't tell him which I had done, so he's ordered lots including probably what I already had done. 

I'll post on here again when I've got the results - a couple of people have PMed me wanting more details of which tests I had. 

Off the top of my head, the initial consult is £225, the follow up is £150, and the tests I'm having add up to about £600.

Roo - All the tests last week were done on the NHS and you're right, the clinic replied to my email requesting my notes, saying to go through my GP. Thanks!

Best 
OneStep


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## ♥JJ1♥ (Feb 11, 2006)

coco MR ******* is an obseterician and gyanecologist he works NHS wise at St Hellier Hosp but has his privata practice if you google the miscarriage clinic that is his private clinic- he rotates his private venues from Harley St to around London.  He can work alongside a  clinic doing IVF.

HE diagnosed my NK cells

L x


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## Lou-Ann (Apr 20, 2008)

Onestep, sounds like Dr ******* is being very thorough. Hope you get some answers from the results 

Lou-Ann x


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## winky77 (Nov 27, 2007)

Hi....

Onestep....I was also having blood tests around Harley st on monday too !!  We could have met for a coffee!!! Hadn't posted about me going there as it was all a last minute thing.  I had a consult with Dr Gorgy at the Fertility and Gynaecology Academy on Wimpole st at 10.30ish....works in same field as Dr *******.    I was heading to Brighton for the weekend and only phoned the clinic on friday to see if I could get a consult.......made sense to stay down an extra night through until Monday rather than organising a separate trip so I am really glad they could slot me in.  Dr Gorgy was very understanding - we spent a long time talking through my history.....4 failed implantations of fresh IVF, 1 failed FET  (in total 12 grade 1 embryos transferred without any sticking) and known high level thyroid antibodies.  I ended up having most of the Level 2 immune blood tests done to test for various NK cells plus chromosome abnormalities......£1250 shoved on the old credit card...eek!  I also went to the lab that they all use and had 12 vials of blood taken most of which have to be sent to the States for analysis.  I should get most of the results next week with the chromosome ones another couple of weeks later. 

Thanks for the radio link....it was an interesting listen although I am glad I noticed afterwards that it was 2004!  I was getting uneasy about the unknown risk side of the steroid treatment (which I have done the last 2 cycles)....but presumably by now they have bottomed that out! 

I am just wanting to chuck everything I can at my next cycle.  Time is running out with my old eggies! 

..Winky


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## winky77 (Nov 27, 2007)

Hi Rose....

Dr Gorgy is who Suitcase saw.....just went there cos that's where i could get the appointment for Monday at short notice.  The problem with having the tests is that if they show I would benefit from Intrallipids/IVIG then that's lots more £ for something unproven.....but I am prepared for that.  Like most of us I am just looking for answers.....if I do have raised NK cells then that gives me some explanation .....but am hoping I don't then won't have to spend on IVIG etc!  The chromosome tests are also of interest cos if that shows anything up in me then it will narrow down what I should test for if do PGD.  

I am also progressing getting my fibroid removed and losing weight.....can only help! 

Good luck with your decisions on testing.  And don't worry about 5lbs....I can put that on just sniffing a bar of chocolate!   

..Winky


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## suitcase of dreams (Oct 7, 2007)

Rose - you are right that immune tests will not help if it's chromosomal, although there is one of the level 2 tests which looks at some chromosomal issues (can't remember the name of it but Winky will know - I didn't have it though)

And yes, if issues are identified, the next line of tx is the IVIG or intralipids. 

Have to confess I am personally feeling a bit like all these immune tests are pointless, but maybe that's because I now know my issue is poor quality eggs and that despite the raised NK cells, all the immune tx in the world won't make a difference to my crappy old eggs....

I do acknowledge though that I needed to go through the immune tests to ensure I had explored every option....so to some extent it was more about exhausting all the possibilities and feeling I'd tried everything I could with my own eggs....

That said, some women do swear by ivig/intralipids - but those are the ones who got pg - and who can say if that was down to the immune tx or that it was just their turn 

Sorry, not much help I know. All too easy with the benefit of hindsight to say the immune tx was a lot of money for nothing I suppose...

Suitcase
x


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## suitcase of dreams (Oct 7, 2007)

Rose - just an FYI, but LWC are putting their prices up on July 1st - I didn't ask about new prices for OE IVF but impact on donor egg cycle is more than £1000 - not that you can really do anything about this, but just to let you know  

Suitcase
x


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## OneStepAtATime (Sep 14, 2008)

Blimey - what a day.
I'm so tired I missed my turning on the motorway on the way to the clinic and ended up paying twice on the M6 toll road to get off and back on again.  

At the clinic, the scan was a bit odd - even though it's only day 11, the follicle was hazy and the lining was echygenic (sp?) showing I was ovulating or had already ovulated- so they set me up for a transfer on Wednesday (earlier than we'd thought it'd be).  

Then I got a phone message from Mr ******* saying I need to go down and see him because my immune tests came back showing very high natural killer cell levels...  

So I think I'll have to cancel the transfer. 

Does anyone know when you have to start the steroids? Is it too late if I start them at transfer? I think I remember reading that it's at egg collection stage. 

In a way, I'm glad in a perverse kind of way - if this is a problem and it would have affected the outcome of the next treatment, it's good to have found out. 

Then part of me wonders how many of his patients need treatment - my sceptical side! - do all of them get recommended for immune treatment? 

Last Sunday I went on a 13 mile walk in the sunshine and there was a lot of pollen - I don't usually get hay fever, but when it's mega high, I get itchy eyes, runny nose etc. Would that affect your immune system?? I am completely ignorant as to whether allergies and immune system are related. Would that have meant that my immune system was in overdrive on Monday when they took the blood tests? Or am I barking up completely the wrong tree? 

Funny what life throws at you. A year ago I was just having my first IUI, thinking I only needed donor sperm...

I know there are many people on these boards with much more serious issues - I'm certainly not saying I have them (yet!). Just that I might have more issues than I thought I did (ie single and not a spring chicken any more). 

Well, time for bed. 

Oohh - but before I forget, I was asked out on a date this week! First time in yonks. I must admit that I don't think he's my cup of tea - but he's easy to talk to and you never know... At the very least, it's a pleasant distraction from all of this. Can you imagine if he knew? "Oh and by the way, I know it's our first date, but I'm dying to tell you that I'm having an embryo transfer on Wednesday?"  

Night night
OneStep


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## OneStepAtATime (Sep 14, 2008)

My question got lost in my waffle yesterday:

I'd be grateful if anyone could tell me when you have to start prednisone (or equivalent) - is day of embryo transfer ok?

Thanks
Alison


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## OneStepAtATime (Sep 14, 2008)

I've got the answer now- it's 2 days before transfer. 
OneStep


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## ♥JJ1♥ (Feb 11, 2006)

I was due to start it on ET day and clexane for NK cells, what does your immunology expert recommend for you, as I remmeber ARGC starting me on dexamethasome pre EC and then changing to Pred afterwards.  What dose are you on 10 or 20 mgs?

L x


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## OneStepAtATime (Sep 14, 2008)

The trouble is, I only had a phone message that I picked up late yesterday saying to arrange to see him because my Natural Killer cell count was high, so I have an immune problem. I thought the transfer would be later in June (a day 11 ovulation doesn't fit with my normal cycle length, but there again, after the m/c I guess my body may still be sorting itself out), but as the scan yesterday showed it's going to be Wed, I don't know whether I can see him in time for this cycle. I took the antibiotics last night and this morning and should be starting the cyclogest now. I guess that won't do me any harm if we do end up cancelling, so I should continue as if I'll be having the transfer.

I tried ringing his number and there's a pager number on the voicemail for medical emergencies. I'm not in any medical danger - but it could seriously affect a £1000k+ transfer... so would he see it as justified to ring this morning I wonder... 

I rang my clinic and the receptionist is going to get a nurse to ring me.  

Hopefully things will be clearer by the end of today.


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## ♥Jovial♥ (Feb 25, 2007)

Hi Onestep,

I'd give him a ring if I were you .... he's getting enough money from you and you do need that information.  Sorry you're having to deal with all this, though it is a lot better in the long run that you know of any potential issues.

Good luck with your date    Make sure you come and tell us how it goes!  It's been ages since we had any dating news on here.

Have a good weekend,
Jovi x


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## ♥JJ1♥ (Feb 11, 2006)

Like Jovi says I'd give him a call he is a lovey man, I called him once and he was fine. I can't find my old protocol but did he give you the code to get onto his restricted bit of his website as the protocol are embedded in the members section
L x


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## OneStepAtATime (Sep 14, 2008)

Thanks Jovi and JJ1. I've left a message with the paging company for him. 
OneStep


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## RedRose (Feb 17, 2009)

Hi everyone, 

    Onestep, hope you get hold of Dr. ******* ok, I am sure he won't mind.  And no, he doesn't suggest treatment for every patient ( I admit I am a bit cynical too sometimes about Harley St! ), as I had some tests with him and he just suggested thyroxine and aspirin to me as I did not show up as having high NK levels.  Best of luck with your transfer, I am sure you will feel more reassured by taking some meds this time.
    The Beer book does talk about allergies as well, I also have quite a few which all got worse after my first m/c and I think there seems to be evidence that they and auto-immune diseases are an indication of possible immune-related m/cs.  
    How did the date go or are you still looking forward to it?  Hope it is some light relief for you  .

      Winky, good luck with your test results and tackling the fibroid, 

      Suity, I don't think your immune tests and treatments were a waste at all, it means you will be well prepared to deal with these issues when you have a donor egg transfer and have all the contacts needed in place. 

      There's an interesting section in the Beer book about how he believes that the TNF alpha produced by the NK cells can damage the egg quality and also make them less likely to fertilize.  There is also a quote from him stating that "the incidence of Down's syndrome and genetic abnormalities in the fetuses of older, immune-treated women is two times less than the life tables predict for women in their age group", which if true is a pretty significant statistic.  He seems to go on to say that starting the immune therapy well in advance of conception ( ie 17 weeks ) may help in very difficult cases.  Very interesting, but it is does involve a big financial commitment to carry through his ideas, but if I win the lottery it's where I would be headed.

    Hi to Rose, JJ, Jovi, and Coco and everyone I 've missed, love Rosi.


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## OneStepAtATime (Sep 14, 2008)

No word from Mr *******. 

I've left 2 paging messages and one email to the miscarriage clinic. The clinic opens 8.45, so I'll be on the phone as soon as it opens!

I've also emailed my boss to say I may not be there much of tomorrow, depending on what happens. She's been supportive - and in this kind of unpredictable situation (I don't know yet whether I will need to go to London or how I'll get the meds) it's good to be open and say I really don't know whether I'll be in or not. I work long hours and weekends (extra!) when necessary, so it isn't an issue in terms of getting work done - but it's actually very inconvenient tomorrow as we have an open day...

Fingers crossed, I can get the meds and it's all sorted tomorrow. 
I don't want to have to cancel this cycle, because it might not even thaw anyway, so it'd be a shame to "waste" another month (I want to get on with an IVF asap if it doesn't work)

Sorry - no personals, I need to get to bed. I hope you had a good weekend. 
Best wishes
OneStep


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## ♥JJ1♥ (Feb 11, 2006)

good luck onestep
L x


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## Lou-Ann (Apr 20, 2008)

Onestep, I hope that you manage to get hold of Dr ******* today and get some more detailed answers from him. Good luck 

Lou-Ann x


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## OneStepAtATime (Sep 14, 2008)

Thank you JJ1 and Lou-Ann

I've got my results, spoken to Mr *******, had the faxed prescription made up, and spoken to my clinic.

The things that are problematic are Natural Killer Cells and MTHFR (sp?).

The normal NKC count is below 0.8
If you have 0.8 to 0.9 it's borderline, but they still treat it.

Mine is *1.6*! I'm no where near borderline. I guess that might explain why I miscarried. I know it still might have been the egg quality, but a dramatically high immune problem does suggest it could have been a factor.

So he's put me on 25mg of Prednisolone. My clinic, MFS, were surprised at the high dose (their maximum is usually 20mg) but are going with what he's said. I'm more at risk to get the side effects on that dose though. I've just taken one and am waiting to feel the difference...

I'm also on the baby aspirin (he said it isn't the end of the world that I'll only have been on it for 6 days not 2 weeks before transfer) and clexane. Not looking forward to the clexane - I bruise easily anyway - and it's very expensive. £5 per pre-filled syringe!!!!

For the MTHFR I'm on B12 and 5mg folic acid.

I'm not sure how I feel. It's all a bit of a surprise and I'm feeling a bit taken aback by it. I'm still not sure what MTHFR is - but will google this afternoon  Apparently 40% of the population are MTHFR positive anyway.

I do feel very glad that I took the step of getting the testing done. I was reluctant to take the steroids without knowing whether I needed them - I sincerely hope they don't make me feel depressed (which they can do). Now I know my results are significantly bad, I feel relieved that I did get the testing done.

There are no guarantees with any of this, but armed with a bit more information (and rattling with all the drugs!) I do feel happier going into this cycle.

Right - I better had get some work done.
Now all I need is for my precious little blastocyst to thaw on Wednesday. I've read figures that thaw success results are between 50-90%. Let's hope I'm in the "right" side of those figures! I've already arranged for acupuncture afterwards if I do get to transfer, and told my boss I'd like to take some leave at the end of the week (I know there's no "need" - but I'm quite in need of a rest anyway, so just having some down time would be good).

Sorry - I'm waffling again. 
Best wishes
OneStep


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## Lou-Ann (Apr 20, 2008)

Onestep, I'm glad that you managed to speak to Dr ******* today. I know that the results have knocked you sideways, but at least you now have some answers and are able to act on the issues on this round of tx. Glad that you are feeling a little more positive  and   that your blast thaws nicely on Wednesday - Good luck for ET 

Lou-Ann x


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## Elpida (Feb 11, 2008)

OneStep - glad you got the answer and   for Weds

E x


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## lulumead (May 29, 2008)

hope all goes well for weds  
xx


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## ♥Jovial♥ (Feb 25, 2007)

Good luck for Wednesday OneStep     x


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## RedRose (Feb 17, 2009)

Hi all. 

    Good luck for the thaw, Onestep, try not to worry about the steroids too much, they can have side-effects, but I have been on high doses before and have had no problems with them.  And if they stop the killer cells I think they are well worth it, Good luck again!!, love Rosi.


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## OneStepAtATime (Sep 14, 2008)

My little blastocyst hasn't made it. Apparently it looked ok early on, but didn't really expand properly and was degenerating by the time I got there at 2pm. 

It's a shame, but I felt prepared for it. Of course I'd been hoping and sending positive thoughts to my little one all morning, and it would have been so wonderful to be on the 2ww again - but it wasn't to be today. Looking at these boards, people often thaw several to get a transfer, so it would have been pretty jammy if it had worked - and I've been aware of that all the way through.  

I chose to go to the clinic to find out, rather than over the phone, and I'm glad I did. I got to have a good talk about my next IVF (starting to down reg in about 4 weeks) and it feels good to be planning the next steps. I am so happy to have solved the sperm problem - the paperwork is all sorted, so as soon as the wrigglies are out of quarantine (should be mid-July) they'll be shipped over so they're ready and waiting.   Looking on the positive side, I really like the Danish donor I've chosen, and would be delighted if it were to work with his sperm.

I also picked up the B12 and 5mg Folic Acid for the MTHFR - and am starting to take those now, while continuing the aspirin.  

When I think of how far I've come over the past week, it's incredible. Discovered fibroid, discovered high NKcell count, discovered MTHFR mutation, tried to thaw blast (unsuccessfully), got next IVF cycle sorted ... it's a lot! But I feel positive this evening. There are no guarantees about the next cycle, but at least I'm close to trying again, and all of these things may explain the m/c (I am aware there are other factors like 38 year old eggs) and I feel fortunate that there are things that can be done about NKCs etc. 

Thank you so much for your good wishes - it's really good to feel the support from you on this board. 

Just for the record, the prednisolone did cause insomnia (as I was told it would) but whereas the first night I only had 2 hours sleep, last night I had 6 or so, and I reckon I'd be back to normal tonight - your body does get used to it. Clexane leaves horrible bruises (though rubbing the injection site does help) - and I can only imagine what I'll look like with all the IVF drugs plus Clexane - but it doesn't really matter, does it? Funny what we accept when we are told it'll help.  

Take care
Best wishes
OneStep


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## ♥JJ1♥ (Feb 11, 2006)

Onestep the advice for cleaxne is  usually don't rub after you have injected the clexane or the bruises happen,  I never had any bruises only pin pricks but there were some ladies who looked like they's been beaten their bruising was so bad.
You have done a lot of planning
L x


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## Elpida (Feb 11, 2008)

Onestep - so sorry that your blast didn't make it to thaw but good that you have a plan for what's due next.

E x


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## Roo67 (Feb 12, 2007)

Onestep - so sorry your little frostie didn't make the thaw, but great news that you are ready to start again.

I warm the clexane up slightly, under arm or in bra for a couple of minutes, then it doesn't sting so much,

r x


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## Lou-Ann (Apr 20, 2008)

Onestep, sorry that your blast didn't make it . Good that you have your next steps planned though 

Lou-Ann x


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## indekiwi (Dec 23, 2008)

OneStep, depressing that the blast didn't make it   .  Excited to read however that you are so "up" for your next cycle of treatment and are already so well prepared.  I'm   that plenty of joy will be winging your way very soon... 

A-Mx


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