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2nd miscarriage IVF - what’s next

(15 Posts)
Mctm123 Thu 19-Dec-19 18:10:37

Can anyone help please...we have just had our second miscarriage following IVF. We have 1 embryo left in the freezer and are booked in to see the consultant in January. I have been told they will help in terms of investigations before trying with the final embryo but does anyone know exactly what tests they do? The doctor we saw today just said it will be discussed when we see the consultant but made us aware it is very expensive.

Doing my own research, I feel I have a lot of symptoms of lupus and I am going to ask to be tested for that however, can I request maybe clexane injections and aspirin even without a diagnoses or is it only ever prescribed should they find something wrong? Thanks xx

LillyLeaf Thu 19-Dec-19 18:24:20

I had 2 miscarriages after IVF 2 tranfers. We then pgs tested our remaining 3 embryos, all were abnormal. So we did another retrieval, only 1 was normal out of 6 tested. For this transfer I was given Inhixa blood thinner and Prednisolone without any tests just in case. And also did intralipids.

Blondiecub0109 Thu 19-Dec-19 18:24:25

I couldn’t read and run, I don’t know about extra tests, but we had 2 MCs and our third (frozen) just turned 10 months.

Actually my clinic would not go extra tests until 3 consecutive MCs, so I self referred for NK cells testing at Warwick. After the scratch they advised to go ahead with an FET and so I was pregnant before the results.

Will never know if it was just luck, the scratch (which are being withdrawn in many cases as there was research refuting effectiveness) or just because I felt like I was doing something positive.

I would advise to push for whatever testing you feel necessary but be prepared to come away without answers

All the very best xx

Mctm123 Thu 19-Dec-19 19:10:20

@LillyLeaf it’s hard to know whether to do the PGS testing (not to mention expensive) on the remaining embryo or just chance using it or start again on a fresh cycle (I really don’t want to though) did the latest cycle work for you then?

@blondiecub0109 I will mention about the scratch when we go the consultant thank you. I really just want to take medication to support the pregnancy mainly even if we don’t get a diagnoses but I doubt they will let us

LillyLeaf Thu 19-Dec-19 20:53:47

I'm nearly 9 weeks pregnant with our one and only normal embryo. I still don't feel confident it will work out but so far it looks good. It's tricky for you having one left, I think I would maybe transfer it then if you need another retrieval then test them. Good luck. I truly know how awful you must be feeling. I was shocked when it happened a second time, it seems 1 MC is common but not 2.

Softscoop35 Thu 19-Dec-19 20:58:46

Mctm - i dont know much about PGS and could be wrong on this but i thought PGS testing needed to be conducted before the embryo is frozen. I asked the question to my RMD and she said it was too late to do it on mine as they are now frozen.

After id had 2 MC, My consultant said i could have clexane to which the next cycle was successful (well, i was pregnant with twins but had 1 healthy baby).
So on my last cycle, i had clexane again and had a CP. I had my had my first app with RMD last week and she told me no more drugs unless I'm diagnosed with what i would nees them for. She went on to say that if i took clexane, when not needing too, is more harm than precautionary, as it could affect the mothers health.

LillyLeaf Thu 19-Dec-19 21:14:30

Softscoop35 my first batch was thawed and biopsied then frozen again. There is a risk with thawing but mine were fine, apart from being chromosomally abnormal of course.

Mctm123 Fri 20-Dec-19 08:30:13

@LillyLeaf thanks for that and wishing you luck with this pregnancy xxx
@Softscoop35 I think I’m just going to ask the consultant for the blood thinners/aspirin and use the last embryo and I may have to just make my peace with it all then. We are lucky as we have a naturally conceived little boy who’s 4 and we so desperately want to give him a sibling but we also want to give him a good life and throwing all our money into this at some point you have to be realistic. Good luck to you all xxx

itwasalovelydreamwhileitlasted Fri 20-Dec-19 12:53:03

I've also had PGS due to recurrent miscarriage didn't get any normal embryos on last cycle - you can thaw previously frozen embryo test them and then re freeze

Lupus has a wide range of symptoms - probably 20 or more but you have to tick off 5 to get close to a diagnosis - you may have some blood clotting issues though which may or may not be related to lupus - most IVF clinics put recurrent miscarriage patients on blood thinners and steroids as standard these days so I'd obviously asked about that - we tried it on 2 transfers and still miscarried though so it's not 100% perfect

The tests your clinic are on about are super expensive but you only really need the main ones
- thyroid
- blood clotting

You could ask about NK cells but the treatment for that is steroids anyway which you could just ask for a low dose of anyway on the next transfer and ave yourself the £500 cost of the test

Then there is karyotyping but honestly if you are thinking about PGS then don't waste money on both

You also need to consider your age though - over 40 and the doctors expect 70% of embryos collected to be abnormal.....in 36 and 100% of mine were. In the U.K. you aren't allowed to transfer abnormal embryos so if you decide to test and they are found to be abnormal then be aware you'll have to destroy them x

Mctm123 Fri 20-Dec-19 13:58:16

@itwasalovelydreamwhileitlasted thank you for that information. Makes me feel better! I’m definitely leaning towards just asking for the meds rather than PGS testing the more I think of it. I’m nearly 36 and we’ve been trying for over 4 years. I really suspect I have lupus as I have a rash on my face that doctors assume is a combination of acne and rosacea but I also suffer with poor circulation and sometimes joint pain so it does make me wonder. Regardless of that though, I still want to push for the meds even without a diagnosis if need be as the costs quickly add up don’t they xx

itwasalovelydreamwhileitlasted Fri 20-Dec-19 14:29:29

@Mctm123
It's the blood thinners - clexane/inhixia which are expensive - £5 per injections so £40 per week unless you can get them prescribed on the NHS - but they'll want to confirm Lupus via their own tests - even in my one successful pregnancy whilst the NHS Doctor proscribed clexane due to high risk lupus my local doctor refused to fulfil the proscription and I had to go to the hospital miles away once a month to collect them and I wasn't given them until 16 weeks

Prednisolone for potential NK cells is much cheaper £5 for a box of 28 which would last 2 weeks

X

Mctm123 Fri 20-Dec-19 14:38:56

@itwasalovelydreamwhileitlasted aww I see. That’s expensive but not as bad as I thought actually. I asked my gp if she could test for lupus but she said she couldn’t it has to be a specialist. So she said just ask the consultant to! NHS cutbacks no doubt

itwasalovelydreamwhileitlasted Fri 20-Dec-19 15:14:18

@Mctm123
Yes they have to refer to you the lupus/rheumatology clinic for the test - last time I had mine checked it was about 25 blood test bottles I had to fill 😬😢 - I was diagnosed with lupus about 20 years ago now - it's not a standard bloody test the GP can order unfortunately but the referral could take up to 3 months - it's a fairly rare condition and many hospitals share a specialist/consultant so it can be difficult to get an appointment with them x

Matilda128 Fri 20-Dec-19 16:00:03

I'm really sorry to hear about your struggles. I had an early MC in September and I went to my GP as I always have had health problems and I was convinced I had Lupus or a Thyroid problem. When I went I explained that Thyroid problems run in the family and that a previous GP had said that the next time I experienced a 'flare up' (when I feel particularly horrible and my joints start really aching) we would check my blood. I was so happy that the GP (a locum) checked everything for me (there were about 15 of tests- however not clotting). To my surprise they came back completely normal apart from my iron (which she had done just in case). Since then they have also decided to check for Celiac disease which I didn't realise also negatively impacts pregnancy. This also came back normal. Perhaps what worked for me is that I emphasised how I always have these symptoms and disconnected them from the fertility issues. I guess I'm lucky that the GPs are happy to check but the process of constantly going in, focusing on every symptom and nervously waiting for test results also has made me incredibly anxious. Especially as I'm still convinced there is something wrong after all. It's just really difficult and I really hope your GP or consultant can offer you some useful support. Xxx

Mctm123 Fri 20-Dec-19 18:37:04

@itwasalovelydreamwhileitlasted there will be nothing down for me if I have to fill that many bottles of blood...that’s another issue...they can never get blood out of me! Literally it takes them at least 4 goes an they end up having to go in my hand an even then it doesn’t come out! That makes me wonder what’s going on as well...
I think if it takes 3 months I will just have to be patient and let it since this is our last go of it. I probably need a couple of months to get my head right again to be fair as well. New year, fresh start! Xx

@matilda your right about emphasising about it not being related to fertility issues, I did that an still got fobbed off as my skin is so bad an has been for years an this affects my mental health an I suffer with anxiety over it! But, for years I’ve been told, we can’t treat it since your TTC an I think that’s what I’ve had enough of. Everything’s on hold just incase I get pregnant. How long can you live like that? So frustrating! Also Matilda, you know your own body an if something doesn’t seem right, it’s good you are pushing for answers xx

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