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9dp5dt AF has arrived and a BFN 😭 Advice for what to ask the clinic?

Had a huge, long, exhausting cry sat on the bathroom floor when I finally got home from Bruges last night as throughout the day the pink spotting turned brown then red and the cramps continued.

2 such good embryos and yet still no implantation. They were my 5th and 6th go.

Need to ask my clinic about going back to lubion injections for next time. Also to ask about why I’ve not been given oestrogen for the 2ww and to say that I’ve never had my thyroid tested. I’ve had 4 scratches now.

Very thankful to have 5 embryos in the freezer but panicking as to why none of them so far are working. These 2 embryos looked so good.

What else would you ask the clinic if you were me? Going forward what can I do to help....

Sadly we couldn’t afford the £2.5k for PGS but it would be good to know if it’s the embryos that are abnormal or an issue with my body x

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So so sorry to read this this morning life is so bloody cruel

I really thought and hoped it be your turn big big hugs and allow your self to cry let it all out totally gutted for you really am :(

Have you been given the Pessaries and told to take metformin,

Don’t blame your self there’s unfortunately nothing you can do

Sending lots of hugs xxx

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Yes 3x 200mg pessaries a day and 3x metformin a day and 3x DHEA a day I’m on. Thanks - we thought it was our turn too. Don’t know why it’s not working x

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I'm so sorry to hear this. I was really rooting for you. I've been on oestrogen and had thyroid function tested so definitely need to look into that. If this transfer doesn't work for me I'm going to have further exploration about whether the issue is with me. It's so hard and I hope you have lots of support. This journey is never easy xxx

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Have you been on oestrogen for fresh as well as frozen transfers and in the 2ww, not just on lead up? What oestrogen support have you used? Thanks for rooting for me and vice versa. If this transfer doesn’t work what issues are you going to explore? Xxx

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I've not ever had a fresh only frozen. I took oestrogen it from day 2 of my period 3 times a day and am still taking it. If I do miraculously get a BFP I will take it until I'm 12 weeks along with the pessaries. The oestrogen I use is Progynova. If it doesn't work going to look at investigate look at my uterus (can't remember the name of the procedure) as like you I've had good quality embryos, good lining, under 35 and only known issue is my tubes so there just be something else if not sticking. Other testing is Comet test for sperm as if the DNA in sperm is damaged this can cause implantation failure or miscarriage. The usual tests do not test for this as quite expensive but may be something I consider as there is treatment if DNA damaged in sperm for men xx

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I’ve used progynova before on my 2 FETs to get my lining thick enough for transfer but I’ve not ever used it past the transfer so I’ll ask about that, thank you. My partner has had ROS testing for sperm and it came back fine. Good luck with getting your BFP xxx

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I hope you can find some answers and probably worth speaking to Diane on here about some questions you should ask the clinic xx

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Awww Scarlett, Im so sorry....its just devastating to bleed in the 2ww! You shouldnt need estrogen for the 2ww if this was a fresh cycle ot that's my understanding of it. How much progesterone were you on pessary wise, maybe you could be on a high dose or the lubion injections may help with this. Ive used 6 embryos too, 4 transfers - 3 OE and 3 DE. My DE ones were literally perfect on paper but it has got me wondering if PGS would tell me more as the donor had proven fertility but my husband had karyotyping done to rule out genetic problems.....could you perhaps look at karyotyping? The only other thing I can suggest if you havent tried it is steriod cover for NK cells....that's what Im trying this time....think Ive exhausted everything else. Big hugs lovely, its not fair we have to go through this time and time again.xx

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When I’ve had a frozen cycle I’ve had progynova up until transfer but not then continued it in the 2ww, did you continue on it? Others seem to have had it continued...

My GP would not do the karyotyping for me and I think the clinic didn’t think it was necessary without any significant family history to justify the price, plus I have 5 frozen embryos to use up now before another cycle.

I’m going to ask for steroid cover for NK cells, thank you. Great idea.

With 7 embryos perhaps we should have stretched ourselves and gone with PGS but 2.5k is just so much.

You must be so frustrated that your amazing DE haven’t yet worked either. I’m so sorry, what a long painful journey this is. Thanks for your reply xxx

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Yes Ive been on estrogen for frozen transfers and continued to be on it for the 2ww, would have been kept on it longer had it been successful too....sorry I thought this was a fresh cycle! That's a shame you cant get karyotyping done, I think its cheaper than PGS but I guess that doesnt rule out chromosomal issues in the embryos....which is my concern now too....or perhaps Ive just got a sh!t body! A lot of Dr's dont believe in the NK cell malarkey but Ive seen more and more ladies on here have success (maybe coincidence but Im willing to try anything now) so defo worth a try if you can get your clinic to support you, its not expensive. Oh and defo worth getting your thyroid checked out too!xx

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This was a fresh transfer but my next will be frozen so will ask about continuing the oestrogen. I think I it’s worth doing anything now!!!! Xxx

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Just saw above that you were on 2x200mg pessaries. I had bleeding before OTD in my NHS cycles which I believe to be due to not enough progesterone but clinic said that wasnt possible although I was just on crinone gel. My clinic abroad actually have me on 2x400mg per day which I havent bleed on before OTD which I think says a lot and said if I did get spotting to up to 3x400mg per day which Ive never had to do.xx

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Yes I think it has to make a difference and glad your new clinic has acknowledged this xxx

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So sorry to see this hon. Sending you big hugs xxx

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Thanks xxx

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Just a thought, reading other responses on here - I continued on both progynova and utrogestan after FET transfer. Progynova he told me to stop gradually after the scan so I was on it until over 6 weeks. I'll be on the progesterone until week 12 probably.

I had my progesterone levels checked a week after transfer and Dr told me to upp the utrogestan. Maybe next time you can ask for yours to be monitored at least once? I was told that even if the transfer didn't work I wouldn't bleed until coming off the progesterone. I started on 1000 and it went up to 1600 which seems like an awful lot compared to what I've seen others taking on here.

Keep your chin up lovely xxx

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Thank you, I asked about having my progesterone levels checked before and they said it wasn’t something they did as they believed I was on enough - but clearly not!!! So I will definitely ask for my progesterone to be check next time and I’m going to go back to the lubion injections instead of the pessaries. I’ll also ask if I can stay on the progynova throughout my next 2ww xxx thank you xxx

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Sending huge hug for u.

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Thank you, this one really hurts xxxv

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Oh noo 😭😭😭 I'm soo sorry lovely. Massive hugs hunny. Ask Dianne Arnold for her list of questions as you may find some of them relevant to you but some won't be. I felt more prepared when I took them with me second time round. Much love 💕💕 xx

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Good idea, thank you xxx

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So very sorry for your bfn. They are just horrid 😥 glad to hear you have so many frosties...I was told by my doc at my age (38) at least half of all my emvbryos would be genetically abnormal. So I just hope and pray my last 2 in the freezer at least one is ok! After 2 failed fresh transfers this is it for us. And you having 5 wow that's awesome hun odds are a couple of them will be normal 🙂 That's what I tell myself anyways, so you have so many chances left. My clinic doesnt believe in glue, NK cells or any of that stuff so they wont even test me for anything. I'm sorry for your BFN hun please look after yourself and drink and eat lots with xmas coming up, spoil yourself you deserve it xxx

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Thanks so much for your lovely message- I’m also 38. I’ve had a total of 6 embryos transferred now so was hoping one would have stuck by now. I know I now need to get positive again for the amazing 5 Frosties, we are very lucky to have had such a good round, and I’m so grateful, but do worried that there could be an issue not yet picked up on xxx good luck with your remaining Frosties - I had 2 with my last round and none with my first so you have done well to get those and I hope they stick for you xxx I’m drinking alcohol this Xmas!!!

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Aww hun how awful it must feel I've only had 2 transfers 1 embryo each times. Same as me first round none to freeze was gutted. Last round 2 to freeze but frozen on day 6 so success rates a bit lower. But I'm still very happy we at least have those! Well I guess just talk go your doc and mention anything and everything you want and need too, I hate how my doc basically says.....its basically just a roll of the dice Nicole. Umm no im not at a casino this is my life were talking bout here lol 🤣 but I get it I think some of us are just a bit unlucky I know I sure as hell am always have been lol. Yessss hun drink alcohol, eat lots and just enjoy. You definately deserve it and those frosties are waiting for you when your ready 😘😘💕💕

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Thank you!! Good luck with your Frosties!!!! Xxx

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Sorry to hear this, it’s heartbreaking having to go through so much just to be let down again.. I’m at the same clinic as you but am one round behind you (last funded round before we go private).. I’ve had 2 bfns and 1 MMC at 7 weeks.. When I saw the consultant, he agreed to change my protocol a bit, suggested a scratch (I haven’t had one yet) and also screen for the C4M2 gene mutation (this happens in London).. Haven’t had the test yet but if either you or your partner carry it, it can cause miscarriage and recurrent implantation failure.. Maybe something to look into? If you google it, there’s info that comes up..

If after this it’s still not working, I want to look into immunology but when I brought this up to him, it doesn’t sound like he really believes in it which doesn’t help much.. Trouble is, there’s so many variables that can affect it it’s almost like order of elimination.. It sucks big time..

Sending lots of hugs though and I hope you can have a break over the Christmas period and gather the strength again to start in the new year xxx

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Hi Jen, nice to know I have a clinic buddy! I live in Canterbury so often use the sittingbourne satellite clinic which is much nearer. Sorry to hear of your BFNs and MMC 😭 I’ve had the scratch 3 x now and we also did the C4M2 test and it came back fine. I’m going to ask about having the steroids that would be given if I had NK cells but had a feeling they might say no.... I was offered PGS but at 2.5k turned it down. IF you need a third cycle, have you decided what to do? I’m with Access fertility doing a 2 cycle package with no refund - this is all that Access fertility would offer us. No refund package due to having 4 failed transfers (now 5/6). And thank you - hope you have a nice Xmas too xxx

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Yeah, thankfully the Sittingbourne office is closer as TW is a bit of a ball ache to get too, especially for all the scans! Hopefully they will be open minded re the steroids, I’ll be asking the exact same thing if the next one doesn’t work!!

Definitely see what your gp can do re thyroid and vitamins, it’s what I am also planning to do too! There’s so many variables, it becomes quite overwhelming!! 😳 I’m not sure re PGS because of the cost and if we don’t do well from the next cycle, we will probably go down the same route with access fertility.. I had thought of changing clinics but there’s not really much in Kent so would be looking at London.. I quite like TW and hoping once we are private, we can push for more testing! Good luck with it all and let’s hope 2019 is our year! Xx

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Good luck!!!!! Let’s hope our clinic gets us our dream! X

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Oh no Scarlett I’m so sorry to read this!! Thinking of you xxxx

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Thank you xxx

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Oh Scarlett I'm so sorry to hear that xxxxx

Was really hoping upping the pessaries would help ward off the bleed at least.

1) definitely would ask about lubion again.

And yes ask about your oestrogen levels too.

2) thyroid tests will reveal a lot more. (Make sure they test TSH, TPO antibodies, free T4& free T3 at thevery least. TgAB antibodies also if possible)

If you do have autoimmune thyroid issues then can be treated with thyroid hormone tablets - sometimes steroids help to control the immune system too.

There are other diet and lifestyle interventions you can do once confirmed.

3) also have you had VITAMIN testing?

Vitamin D, b12, folate, iron etc are all important for fertility as well as thyroid.

It can make such a difference (even if youre on a multivitamin if you have defiicnecies in these the multivitamins won't be at the right dosage or type for you. Do make sure you come off the mutlivits for a week or two before testing to get accurate results (as can see vit B results especially )

4) you can also get anticoagulation and blood tests done for clotting factors and antibodies. Even if comes back negative some women still respond to blood thinners and aspirin so might want to try next cycle.

We've thrown eveything at this cycle but only 4dp5dt so too early to tell if anything is working yet! If I don't bleed before coming off pessaries I will consider that a part success (!)

We declined PGS too. We were quoted 4k(!) For that price we could do two full cycles and give those 'abnormal' embryos a chance so we thought we'd just go with it.

Sometimes it's reassuring to know that it might just be one of those things. About 30% of embryos just naturally aren't viable. Nothing wrong with us- happens to every woman - hence it can be just a numbers game. And why so many women just get a lucky BFP after lots of cycles.

Please take the time to heal and come back to these questions later when you're ready.

I've just posted this now for future reference in case I forget

Tc xx

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Will reply later - just going out now with my partner to get fresh air and leave the house xxx thanks so much for all this info

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I’ve screen shot all this info for when I compile my questions for my next consultation- you really have been super helpful, thank you. Have you had any of those things done for free via GP or remember how much your clinic charged? Good luck on your journey xxxx

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You're welcome hun and really hope you start to feel stronger soon again .

Thyroid and vitamin testing should be done by GP quite easily (do you have anyone in your family with thyroid issues also?)

As you can take excess iron and vit D among others they should really test you first esp as in winter so you can take right doses. (I would also check online the symptoms.of low b12/iron/vit D levels and if many of them apply also push that you have been feeling these synptoms for a while and need to find the root cause for it as well as increase your fertility chances and support a pregnancy

For blood clotting and lupus antibody testing - many clinics offer these- they are usually labelled repeat implantation failure tests or thrombophilia screen tests.

However if you have had lots of failed cycles or chemical pregnancies etc you should be able to ask the GP to test also.

You would be quite within your right to do so as would any woman with repeated miscarriage etc

Some.GPs will be more cooperative than others but without sounding crude if you present your questions /symptoms.to them in a way that they understand how upsetting it is for you but how determined you are to tickboxes all these off then they should be inclined to help.

Really hope it helps- has made a world.of difference to me xx

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Thanks so much, I’m going to book a GP appointment and see what I can get done on the nhs before seeing how much the clinic will charge! It sounds like you’ve had a lot of great investigations done xxx

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Oh yes I forgot to add I didn't actually have the thrombophilia testing !

My consultant basically said some women respond to blood thinners like clexane and aspirin even when they don't have a clotting problem (increased blood flow to womb) and some.women may have a rarer clotting issue that standard tests don't show up.

So in effect testing might be pointless and I should just go ahead with the treatment.

I was fine with that logic because I know my thyroid issue can cause other conditions and I'd rather throw everything at it!

So I didn't bother testing with GP for those tests (although had thyroid and vitamin testing)- I think you're in a better position to ask for the thrombophilia testing too and lupus antibodies.

My clinic would otherwise charge £400 for it.

Steroids also help dampen the immune system- so if you have an antibody immune issue that is possibly stopping the embryo from implanting- such as thyroid/lupus etc - then steroids will help.

I'm on blood thinners and steroids and vitamins and progesterone injections, pessaries and estrogen patches (evorel- used to feel sick with progynova)

We've chucked everything at it and I do feel better for it. Let's see if it actually works

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So sorry Scarlett. Take the time you need. It will happen for you. Sending you big hugs xx

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Thank you xxxx

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DianeArnold

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So sorry to read this dear.

Sending you a bear hug.

Hope the next one works for you.

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Thanks I’m so sad xxx

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Sorry to hear that lovely. Sending you loads of positive thoughts and big hugs 💜💜

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Thanks so much xxx

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So sorry, I’ve had numerous failed cycles previously so know how you feel and its the worst feeling in the world. This time we have used daily prontogest (lubion didn’t even keep AF away for me) 2 x daily cyclogest, clexane and prednisolone, so I would speak to your clinic about these. If you are doing FET you will also need to continue with the estrogen. Your clinic should also test your thyroid every 6 months or so and if you are bleeding early then your clinic really should be checking your progesterone levels prior to transfer and during the 2ww.

A few other tests we had were karotyping, DNA frag and hysteroscopy so maybe worth considering. Again I am so sorry, I know how much it hurts.

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One final thought, have you had the ERA test done? If you are transferring good embryos without implantation then it could be to do with the endometrial receptivity. xx

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Hi sunshine

Sorry to jump on here but I am basically on the exact same protocol as you but lubion instead of prontogest. I also have thyroid meds.

I'm hoping it's enough to stop the early bleeding but I hadbt heard of the ERA test- but checked at my clinic just now and they seem to offer it (although never mentioned !!) I always felt my cycle length wasn't normal and now it's completely absent so who knows

Did it help you?

Thanks in advance

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Hi Saya, I haven’t had it done either but it is something I have considered if my current treatment doesn’t work out.

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Have you tried FET with down regulation first? It takes longer and it’s more expensive but my clinic have explained that they get better results with it because it means the window of implantation is controlled. Sorry if you’ve already tried it and that hasn’t worked xx

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Hi, thanks for messaging me, always appreciated. I’ve never done down regulation. How does it control the window of implantation? Thank you! Hope you’re ok xxx

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Just to jump in here....you dont need to down regulate (put your body into fake menopause)....progynova taken early in your natural cycle stops ovulation too and when you add in progesterone this is what controls implantation window unless you're doing a completely natural FET of course. I chose not to down regulate as it kills me with side effects and takes longer, if you can avoid then I would recommend.xx

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Cinderella is right, you don’t need to down regulate and if you have awful side effects then don’t put yourself through it. But my clinic have better results with down regulation for FET. The way my doctor explained it is that with down regulation your own hormones are suppressed so they know that my window of implantation is when they are transferring, as they have created that window with the artificial hormones. I don’t know how much truth there is in that in medical research but my clinic showed me their results for FET without down regulation and FET with and the BFP rate was higher with down regulation xx

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It’s definitely worth mentioning then! Xxx

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So sorry to read this Scarlett 💖 it’s such a horrible journey, but cling on to hope 🌈 sending you love and hugs xxx 🐻🤗

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Thank you so much, it’s so hard isn’t it, I just need to cry it all out then pick myself up - hope you are doing ok xxx

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So sorry Scarlett. I started bleeding during 2WW after my first transfer and it is very hard experience. I was on Lentogest 2 x a week during the 2nd transfer and I didn’t bleed. I would definitely have your thyroid tested. Have you been on Clexane and/or aspirin? Have lots of cuddles with your husband today xxx

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Never tried clexane or aspirin. Will ask about them at my follow up, thank you. Been having a chilled out day with my partner - thankfully we took the week off work together. Hope you’re doing ok on this journey x

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The other thing to ask about is a steroid. My consultant said it improves implantation so although I’m not completely sure about it, I will enquire. I have ups and downs on this journey, definitely the most challenging experience of my life so far. Best wishes x

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Ooh please let me know what the steroid is and why you have been put on it, that would be really helpful, thank you xx

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The steroid is usually prescribed for women with autoimmune issues. I don’t seem to have any. My consultant suggested that I do NK cells test - blood and uterine biopsy but they are expensive and controversial. I’m not sure about the use of steroid in pregnancy but many ladies here tried it and it worked for them. I’m still to discuss it with my consultant, not sure if he agrees to it without doing the NK cells first. If you look at my previous posts some ladies replied to one about steroids. xx

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Ps this is the toughest thing ever!!!!! X

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I’m so sorry lovely. I had also asked for estrogen after this transfer but both me and my consultant forgot it on transfer day! He said he didn’t think it would make a difference but was happy to have tried it, I’ve read studies that found that success rates are higher with higher estrogen levels after transfer. So keep that on the list to ask.

I’m so sorry though, look after yourself and have some you time and some wine xxx

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Thanks orla, I’ll def be asking about oestrogen! I wish you lots of luck xxx

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I dont really have any wise words but wanted to send a hug and say I am absolutely gutted for you xxxx

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Thanks daisy, it’s so hard xxx

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So sorry Scarlett. I had my thyroid diagnosed late. Went to fertility doctor NHS and he didn't even look at it as the lab reported 'normal' but please make sure TSH less than 2.5 to be optimum for success of pregnancy. Only when I went privately I was put on levothyroxine as I was subtherapeutic. Stay strong. We are all here to support you and keep you strong. Xxx

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Thank you! It seems strange I’ve never been tested? X to

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Hi Scarlett. Will reply to this when I send the questions. Need you to email me at support@fertilitynetworkuk.org Diane

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Have emailed you, thank you x

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Hi Scarlett

Only just reading this and so sorry that it didn’t work this time.

Testing the viability of the embryos alongside tests for your various hormonal levels definitely sounds like the way to go.

I hate to suggest it but do you not have a credit card or other borrowing options you could explore to fund the genetic testing?

Sending you hugs and warm wishes xxx

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Well with 5 in the freezer we are now too late for PGS now anyway I believe as we were told it is done on day 5 before anything is transferred but it may be wrong...but we may have to do it next round depending on other tests for this remaining round xxx

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They can thaw the embryod, test them and then rethaw. That was what we were offered.

Obviously carries risks as normal too.

We decided the cost of 2 FET would be same as 1 pgs at our clinic so thought well just give the embryos a chance regardless !

And pls pls pls get thyroid tested as you said you haven't had it checked

It takes 4-6 weeks for any dose to settle and you may need more so if you can do that as soon as possible will avoid delaying things later

Good luck x

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Thanks, I’ve got a gp appointment in new year to ask about thyroid and vitamin testing and the week after is my follow up ivf consultation 👍

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