# If I knew then, what I know now.....tests I wished we'd had from the start



## jessieG1975 (Mar 1, 2007)

Hi Everyone,

I guess if you are on this board, you would have had a negative cycle. I have been on a long road, which has involved me doing a lot of reading and literature searching to find out as much information as possible, to give us the best chance possible. But, after each failed attempt, I seem to find out more and more.

Throughout our journey, we have never really been told clear, accurate information by any of the clinics we have been to.

We always thought our problem was down to my having premature ovarian failure, and I only found about that this was linked to a genetic condition I have, by looking into it myself, and contacting various specialists who know about my condition. So, after 2 cancelled cycles, we embarked on a journey with egg donation IVF. As there is a shortage of donors in the UK, we have had 4 cycles abroad. 

By the time we got to our third cycle, we had one negative, one miscarriage and one chemical pregnancy. None of our embryo's had ever good enough to freeze, so I started wondering if there might be a problem with my DH sperm, as we had 4 separate egg donors with each cycle.

I asked my GP to refer me to another specialist here to see if the could rule out any other possible factors, I was referred back to my local ACU.  There, I was offerred a hysterosocpy. I was told that I could only have further tests if I was seen by the reccurant pregnant loss clinic, and they would only see me if I had had three miscarriages. In, addition, to have more tests done privately, would cost £100's, if not £1000's, and we are broke at this stage. In addition, I wasn't prepared to go through god knows how many more cycles until I had another miscarriage. One thing, it's so expensive, and then there is the long wait for an egg donor. And, they weren't prepared to alter their referral criteria, so I had to lie. I told the dontor that I had had 3 miscarriages in total, and then he referred us the recurrant pregnancy loss clinic.

Both me and my DH had several tests at the clinic, including clotting, immune issues, thyroid etc, etc. Then, 6 weeks later I received a phone call from the counsellor telling me that they had found a chromosome problem with my husband. It was called a 'balanced translocation', which meant that any fertilised eggs could progress to a misscarriage, severely disabled child, or a 'normal' child. We we referred to a genetic counsellor. You can imaging how devastated DH was. We always thought that it was only me with the problem.

Any way, the genetic counsellor told me that this type of chromosome problem is quite common, about 1 in 500. The only solution was to have PGD, however, there are very few clinics in the UK that offer PGD. She referred us to guys, but, they do offer PGD, but not egg donation, so I don't think they can help us there.

The clinic we go to abroad do offer PGD, and after our most recent cycle, none of the embryos were OK to transfer, so we went for donor embryos. They told us that all the eggs DH sperm had fertilised over the last 4 cycles were likely to be chromosomal abnormal, and it is unlikely that he will ever father his own biological child.

The reason I am writing this here, is that if we had known about this before we starter our treatment we would have took a different rout, and saved ourselves all that emotional trauma of miscarriages, failed cycles, not to mention loosing £1000's. Also, as we have to go abroad for our treatment, we have had to disrupt our lives in terms of work etc. So, I guess what I'm saying, if anyone is considering having another go after a failed cycle, I would advise you to talk to your clinic about any further tests, such as the chromosome one we had, as this seems to be an important test, for a relatively common condition, which is all to ofter over looked. It's not like we have the option to try naturally and then have recurrant M/C's.

I hope that this is helpful to some of you guys,

sending everyone lots of love and luck during their journeys,

Jess


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## Llana (Apr 12, 2007)

Hi Jess

Thanks for your post, We to have just had our 3rd failed icsi cycle 2 at the ARGC and we just don't know which way to turn now. 

I have been PG 3 times with a previous partner and never with DH ( all 3 icsi cycles with DH due to swimmers ) and i have convinced myself that it is my fault and that we have left it to late etc as my FSH does fluctuate although we had 9 eggs last treatment and 5 blasts although not to freeze.  

Can I ask what the name of the tests you had and do you know if they do this privately. We are keen to start again within 3 months but it looks like it took a while for your tests to come back. 

have you decided what you will do next as i understand that you need DE would you consider going the whole hog and going for both DE and DS, not sure if any clinics do that ?

thanks in advance for you help 

K x


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## jessieG1975 (Mar 1, 2007)

Hi Liana,

thanks for your reply. The tests I had were:

Full Blood Count
Electrophoresis
Thrombophilia
Auto immune screen, including cardioliin antibodies
Thyroid function test
Liver function test
kidney function test
lupus anticoagulant

and they were all normal for me. The test to identify any chromosome problems is called Karyotyping, there are several different type of chromosome problems that can be identified with this test. I'm not sure how much it costs to have done privately, but you could get them done at a recurrant preg loss clinic, only most of them wont see you until you have had three m/c's. Most of the test I had can be done by your GP, but the karyotyping needs to be done by a specialist unit, I don't know how much it costs though. You could ask the ARGC if they do it.

The situation for us is that we are on our 2ww at the moment with donor embryo's on board. If it's a bfn, we will go for donor embryo's again. They do offer DS and DE in our clinic abroad, but not in the UK, however I'm happier to go with donor embryo's, it's easier on my conscience as these little beings are already created and sitting in a freezer waiting for a chance to develop!

If I can be of any more help, then please feel free to PM me.

good luck in your journey,

love,

Jessie x x


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## Ellie72 (Aug 9, 2008)

Hi there,

I've just had a failed DE cycle abroad too. I am so gutted. I have a high FSH and my DH has a low sperm count. This is our 3rd failed IVF. First two with my own  (only one placed back) BFN. This time we had two young eggs that also failed. Would you recommend I go for the tests?
Good luck and I hope you got your BFP. Thinking of you 

Ex


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## dreamermel (Dec 5, 2008)

Ladies - we got our GP to sort out the karyotyping test - she had to pull in a favour from the hospital but it saved us £180 or thereabouts. Ufortunately ouir 1st ICSI failed, but I've seen her and we're going to talk to an immunologist; before I go and spend lots of money getting those tests done, I'm bringing the list of tests back to my GP and she's going to see which ones she can help us with again. It's more than worth a shot....x Mel


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## Choice4 (Aug 14, 2008)

Hi Girls
This is a list I have made up as go along, it might help someone

I have discovered a few things I wish someone had told me before trying to conceive.

1. Find a good fertility Dr, especially one who would also do immune tests, embryo quality test and good protocol if needed
2. Factors that may affect outcome of treatment
a. Problems with Egg/embryo quality e.g. age, ovarian reserve, embryo quality
b .Problems within uterus e.g. anatomical, hormonal, immunological, infection
c. Problems with sperm, e.g. low sperm count, morphology etc
3. Additional Tests you may need 
a, immune test e.g. nk cell, DQ, HLA, TSH, ANA, APA, MTHFR,LAD etc
If test appear abnormal may need any of these, steriods, Ivig, intralipids, humaria, LIT, heparin, lovenox, asprin, thyoxine, metformin etc
b. Sperm DNA assay, and other tests may need ICSI
c. Karyotype testing in some case.( for XX or XY chromosome)
d. For Competent/normal Embryo CGH test (43chromosome.) and PGD (12 chromosomes.)
e. Endometrial biopsy - for Nk cell, Beta 3 intregin, infection and any abnormality
f. Ultrasound, HSG, Hysteroscopy, Laparoscopy may need to be done
(Ashermans syndrome for scar tissue and adhesions may be considered if you have had previous surgery, D&C, or miscarriage)
g. Test for infection e.g. Chlamydia, syphilis, gonorrhoea

h. Some supplements may help in some cases e.g. Folic acid, prenatal, Aspirin, fishoil/omega3,COQ10, Seleinum, Wheat grass, Vit C, Vit E, Vit D ,Protein drink, Brazil nuts, Bromelin( or pineapple) multivitamin, calcium, Royal jelly, Raspery Tea,
(Please not supplements are not advisable for everyone, and not all are needed)

4. Search internet for lots of information in addition to that from your RE
Some good sites are: yahoo immunology group, fertility friends, ivf connections, yahoo fertility solution, yahoo Ashermans group etc
Copy and save any important article for reference check.
5. Get Alan Beer's book "Is your body baby friendly" if you want to know more about immune issues.
There may be other good books out there.
6. Acupuncture for some people this may help.
7. It gets Very Expensive!!!!! So start early, when you are younger
8. If you have had a failed cycle and your RE would not do anything differently for your next cycle, maybe a second opinion maybe necessary.
9. Last but not the least may need to consider donor egg, sperm or carrier as time goes on.
10. Check out these website where you can ask RE doctors any questions online and they would reply, you dont need to be their patients
http://forums.haveababy.com/index.php?showforum=10

http://www.inciid.org/forum/index.php

Please note this is not an exhausted list, and you don't need to follow any recommendations here. These are just my observations so far and there may be other things to add.

Fell free to add what you think someone should have told you

/links


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## fiona1 (Feb 2, 2005)

Great thread, we started out 12 years ago with a low sperm count, this turned into a Balanced translocation, we too had PGD with no embies to transfere, I was then found to have a septum uterus, I had the septum removed, then immune problems, the list goes on and on, I think i have problems with my lining although this has never been confirmed.

We have spent thousands (prob £50,000 plus) on treatment, and I think now although we have 1 son via icsi we threw alot of money away, in the end we were paying £10,000 per cycle with nothing to put back!!!

Fiona


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