# What would you do?!



## Argybargy (Mar 18, 2015)

Hi All

We finished a 2nd fresh cycle of icsi in Dec. The previous time was in July, both my cycles ended in mc   The second one was really hard because our little bean even had a hb.  It has been a full on 6 months and I took the scary decision to have a career break. To relax, heal and take stock... Now a month in I feel like I do need to make a decision on what to do next and start planning for this. So I thought I would reach out to the ever helpful ladies of FF to see if you can offer me any advice please.

1) do we take a break from Ivf and try naturally. We have unexplained fertility..we got pg after both cycles although no baby so maybe we give nature a second chance, but I'm not getting younger (37) so do we really have the time?

2) if back to icsi do we stick with our current clinic, we have done two cycles with them. They are cost effective, better location, but has a very standard protocol 

3) do we just go for it with an expensive more aggressive clinic like Agrc and throw everything at it, including all our savings (eeek!) ?

Would love to get some other thoughts and opinions?. Thank you


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## RB76 (Jul 27, 2011)

Sorry to hear of your losses.

What did your clinic say at your follow up? Has immune testing been suggested? I'd certainly be wanting to know what else they were suggesting before cycling with them again.

I know the ARGC are meant to be fantastic but it depends if you are able to undertake the commitment needed to cycle there really, doesn't it, in terms  of location and cost?

I don't think it hurts to try naturally in the mean time but I think it would be sensible to plan for your next cycle at the same time. The plan for our next cycle was what always kept me going!

Good luck!


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## Argybargy (Mar 18, 2015)

Thanks RB

Looks like you are definitely talking from experience.. 

They have given us a list of various immune tests to do, one of which costs 900!..

I think it just taking awhile for the mental adjustment re costs as upto this point it has all been on the nhs, but yes it makes sense to do these tests before making an final decisions...

Thank you.. All the best to you xx


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## Caz15 (May 23, 2015)

Hi Argybargy, I'm really sorry to hear of your losses. I also had a mc after seeing a hb so know how that feels. 

I have had quite long gaps between my various cycles because I needed to take time to regroup after each one and spend a bit of time concentrating on other things (easier said than done of course). Plus it's exhausting trying to fit it all in with a full time job and commute, not to mention expensive. 

We have always tried naturally in between but had got into a rut so didn't try very hard although we're trying much harder after my recent hysteroscopy. But then I'm 41 so time definitely isn't on my side (and I only have one tube after an ectopic) but I have a few friends who are still falling pregnant naturally at this age. We will probably move on to double donor if nothing happens over the next few months but I feel we need to give it one last shot, particularly as the new clinic (Serum in Athens) thinks that it's a sperm issue rather than an egg or immune issue and they are confident that DP can improve the quality with antibiotics, vitamins and supplements. 

Immunes are worth checking after several failed cycles but it's v expensive so if you haven't investigated other areas fully, eg uterine conditions, sperm quality, karotyping, they may be a better option to go for first. We only found out about the sperm issues after a recent DNA fragmentation test. Everything looked ok on the usual tests so it was assumed by my first clinic that it was an egg problem. We then went down the donor egg route with less success than my own eggs, followed by full immunes which didn't come up with anything v significant. 

This leads me on to suggesting a change of clinic and a fresh perspective, particularly if your clinic isn't very adventurous. I really liked my first clinic and it was convenient but I realise now that they could have made more of an effort to investigate the problems instead of suggesting that we just have another go on the same protocol. They never mentioned the option of a fragmention test, for example. 

If you do want to check immunes then you could also consider Dr G at FGA in London as he can work alongside other clinics so you see him for tests and treatment and cycle elsewhere if you want. That's what we did. I've heard that ARGC is pretty full-on with loads of appointments that I could never fit in around work.

If we have no success trying naturally, as I think is very likely, we'll go back to Serum in a few months for the next cycle, probably double donor to give us the best chance after nearly 6 years of trying. You get a very personalised service there and they really want to work out what the problem is.

Best of luck. 

Caz x


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## Caz15 (May 23, 2015)

Sorry, meant to add that if you are thinking of trying naturally then you may want to read a book called "It starts with the egg" by Rebecca Fett, if you haven't already, as it contains info on how to improve egg and sperm quality. I got the Kindle edition from Amazon.

Caz x


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## Beandreaming (Sep 14, 2012)

Argy-bargy, 
I'm so sorry to hear of your sad losses.  I think you've had some good responses here but I just wanted to add one thing.  Has anyone looked into your miscarriages and given you a reason?  When did they happen?  If around the 6-7 week mark then it could be your immune system rejecting in which case some clinics use baby aspirin, clexane and other drugs to suppress your immune system to make your uterus more accepting of the embryo.    Also, have you had continuous Progesterone support?  I did 6 failed IUI's and 1 failed IVF using just Cyclogest pessaries.  My successful cycle I insisted on Gestone (injectable progesterone) and I'm convinced it made the difference.  It can be quite hard to get but there are other options like Crinone gel.
If I were you (I'm the same age) I would be looking into my options but also seeking the reason why the miscarriages have happened.  ARGC is not the only option but would be worth it if they could keep a pregnancy going to term for you. 
Good luck whatever you decide.  It is not easy xxxx


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## cosmopolitan4112008 (Oct 18, 2013)

I'm sorry that you have been through all that. As smeone who had several losses, I would suggest the following : 
1 . thyroid test
2. Blood coagulation test
3. Hla matches (not only DQalpha)
4.nk cells and cytokines test
it is expensive, but repetitive losses take much more in so many aspects.


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## Argybargy (Mar 18, 2015)

Thanks so much for the responses. This is really helpful.

I think it is clear that we do need to do some investigations before even thinking about going blindly into the next cycle making the assumption the mcs were just down to bad luck also no point trying naturally if there is a fundamental issue that is going to stop us getting pregnant.

Beandreaming, I was on utrogeston pesseries from the point of transfer, 200 mg three times a day so very interesting what you say about Gestone. The first mc didn't develop beyond a sac, the second one we got a hb at the 7 week scan, it was gone by the 8, so falls in line with the timing you mentioned. So good to have this insight.

Caz, since I posted this original post I have been looking into serum and a couple of overseas clinics. I thought change might be good and also I hear really good things about serum. We also want to look at dh sperm quality this was an issue initially but seemed to have vastly improved with a second analysis, but obviously worth checking again. 

Thanks for the suggestions Cosmo. I have started various tests, last week after blood tests results it did show that my prolactin levels which were an issue are now fine, but my thyroxine needed upping so that's two things ticked, Just a million more to go! Lol.. Will get there eventually  

Will check that book out Caz thank you for the recommendation. Will also look into Dr Gorgy, his name comes up a lot on this site. 

Thanks again for your help. Really appreciate it xx


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## Hopefulshell (Mar 14, 2013)

So sorry to hear of your struggles.

I agree with the immunes testing suggestion. After four failed txs I sought advice from a dr who specialised in recurrent IVF failure/mc for advice. He suggested three initial tests - NK Assay, Cytokines and thrombophilia testing. He said see what comes back and take it from there before paying lots on other level 2 tests. Issues were found (in my sig) so it was money well spent. The initial three tests cost around £1500 and then we had the dq alpha test taken at a later date. I was lucky that my clinic were happy to support the results we had done privately (I had NHS tx) and our CCG allowed us to pay for some of the extra immune drugs privately alongside our FET. I originally thought about switching clinics to the ARGC and spent time reading the thread to find out how intensive tx would be there. In the end I stayed at my clinic because I was happy with them and it is close to home. I did see Dr G but additional tests and drugs were beyond our budget and I wanted to give the alternatives like ILs and steroids a chance before going down the expensive ivig route. 

I took a 6 months career break too and emotionally it helped me no end. It's not easy to reduce your household income or put your career on hold but the benefits were so worth it for me. In the end I resigned and am now self employed which works much better for me stress wise. The thing I struggled with initially when I gave up work was filling my time with positive things. Suddenly I found myself with hours of free time just to focus on tx which was a bit intense. My advice would be to use the time off work to fill your time with things that'll help you relax and be in the perfect position physically and emotionally to face the next step in your journey.

Wishing you lots of luck with whatever you decide x


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## klmch (Apr 22, 2012)

Hi there,
Can I suggest prof Quenby at Warwick for a uterine biopsy checking for uterine NK cells? It's called implantation clinic but also specialises in recurrent miscarriages. Compared with other immune testing it's cheap (£360 last year) and they check uterine lining for UNK cells and give recommendations for future treatment. I've had numerous failed IVFs, OE. And DE. Had the biopsy late last year & found to have very low levels of UNK cells which apparently is also bad!  They've suggested endo scratch & clexane for me. Hopefully it may work next cycle!the are some current threads on Here, just search for Quenby.


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## Argybargy (Mar 18, 2015)

Thanks Hopeful

Can I ask which doc you used for your immune testing? The career break is great, but afew weeks in I am much more relaxed after five years of doing a four hour daily commute. But now I am finding my focus is all on this, so I totally know what you are saying about finding positive things to do. I need to find a hobby so it's less intense!.

Thanks Klmch, I have seen Prof Quenby's name come up often, it's just about 3 and half hour drive from where I live, but it might be worth it.

The tests the clinic I had my previous cycles with asked for us to carry out the following
Lupus anticoagulant
Thrombophilia Screen
Anticardiolpin Antibodies
Coeliac Antibodies
Natural killer cell panel
Karyotype

Collectively costing around 2k, I don't know what any of them are, so am googling them! because the consultant didn't explain anything, which supports the idea to go to a clinic where the docs gets more involved with patients. If I am going to spend that much money I would like to know what it's for!


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## Caz15 (May 23, 2015)

Hi Argybargy, have you had a look at Agate's immune FAQs on the immunes thread? If not, I'd recommend it as it has lots of really helpful info on tests and treatments. For immunes there are level 1 and level 2 tests and you may be able to get some of the level 1s from your GP although I think some of the ones you have been recommended are level 2. There's also a book by the late Dr Beer called "Is your body baby friendly?" and I found it invaluable when trying to get my head round it all. 

I would just say that although I had two m/cs in a row through ICSI, I've been told that our situation is better described as repeat implantation failure (rather than recurrent m/c) because we never had a natural BFP. And since the two m/cs I've had two BFNs so I guess they bear that out. I think immune problems can cause implantation failure as well as recurrent m/c although it seems to me (and I could very well be wrong) that they are more associated with recurrent m/c than repeat implantation failure. Anyway, I think they are still worth checking out. I suppose I just want to point out that immunes aren't always the answer. I had very much assumed that ours was an immune problem but, as I mentioned before, that isn't necessarily the case in our situation. We did find some immune issues but none of them obviously explain our difficulties, which is why it makes sense to me that it could be an embryo quality problem for us. And part of me thinks that if you look hard enough you're bound to find some problem and how do we know that a good proportion of couples who have no problems TTC don't also have v low LAD before getting pregnant or a partial DQA match? But immune treatment is definitely the answer for some people. 

If you do have the immune testing I would definitely have the uterine biopsy. I had mine with Dr G rather than Professor Quenby (although Prof Quenby is cheaper) and it showed low NK cell activity and then you have to be careful about over suppressing with steroids because some inflammation is needed for implantation. And steroids are often given on an empirical basis, to treat possible immune issues that haven't been tested. So in some cases they can do more harm than good (which is why the biopsy is a good test to have). 

I too was a bit worried about the political unrest and economic problems in Athens but we didn't have any problems on our visit. I suppose flight disruption from strikes is one of the risks but I haven't heard of any disruptions for a while.

Caz x


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## Hopefulshell (Mar 14, 2013)

Hi Argybargy

Sorry, I've only just seen your question so apologies for the delay.

I went to a place called The Gynae Centre in London where I saw Dr Eskander who was really lovely. He recommended we try three of the basic level 2s - NK Assay, thrombophilia and cytokines first to see if they picked up any significant issues (which they did). Unbeknown to me at the time Dr E is also aligned with Dr Gorgy at the FGA (there's a v active thread under the London region in Dr G) and referred me to him for further expert immune advice. I later then had the DQ alpha done with Dr G. Although I didn't take all the drugs he advised I did relay his advice to my own clinic dr who was happy to use the results from both Drs to tailor a more immune-supportive FET protocol. The 3 tests cost (in 2014) around £1500 plus a £200 consultant fee and got the results about 10 days later. 

If you want any more info about either clinic please just ask. If you do decide to go for the bloodtests it required 14 vials of blood so do go to the lab with a snack and drink. The tests have to be carried out in the week but we saw Dr E initially on a Saturday.

Best of luck with your next steps.

X


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## Uber Barrens Club (Jun 6, 2015)

I'm having the level 2 immunes done by Locus Medicus in Athens - 
Immunophenotyping, NK cytotoxicity assay &  For Th1/Th2 cytokine assay for 300 euro. I had already had the level 1 immunes and thrombophilia tests done over here, but they do them as well. They also do DQ Alpha

It's much much cheaper than doing the Chicago tests - the only difference between the Chicago and Athens tests is that the NK Cytoxicity assay uses Intralipids rather than IVIG to tes teh killing power of your NK cells

A lady who had had the Athens tests PM-ed me and told me that when she later saw Dr Gorgy, he accepted the Athens tests and didn't require her to redo them with the Chicago tests.

I'm not going to Athens BTW, I'm just getting the bloods drawn and shipped overnight to Athens. I'm liaising directly with Locus Medicus, who are unbelievably helpful

So although you still need a Dr to prescribe immunes tx, if it's just about getting the tests done, the Athens tests might not be a bad shout, IF your Dr will accept them

Good luck! xx


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