Follow up after 3 chemicals. Need you... - Fertility Network UK

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Follow up after 3 chemicals. Need your opinion and suggestions

Ranchu90 profile image
24 Replies

Last time I posted here that I am having a chemical pregnancy after our first FET (previous 2 fresh transfers). It was confirmed by my clinic that indeed I had a chemical after 2 beta tests. We are having a follow up tomorrow via video call but in the meantime they sent me a list with the tests that our doctor would like me to do before going ahead with another transfer. I am happy to do all of them as this is my 3rd chemical, so I have no doubts there must be something in the middle that we need to investigate. I would like to hear your opinions as well, some of below tests I never heard of before. Also maybe there is something more that I can ask or take into consideration? Here it is what they proposed:

1. Diagnostic Hysteroscopy

2. Vocal scan 3D

3. Pathological anatomy and endometrial culture

4.CD 138

5.Anti-Thyroglobulin (anti-tg) + Anti-microsomal

6. Coagulation , Lupus anticoagulant, APCR, Protein C and S antigen, Factor V, Prothrombine, MTHFR.

I am also considering to ask my doctor to perform a biopsy for NK cells, but I need her opinion as well before taking the final decision.

All above 6 tests mentioned will cost me 1050euro (without NK cells biopsy) I am wondering how much Hysteroscopy (with local anesthesia not general anesthesia) will cost in UK?

Thank you for reading. Suggestion are welcome ❤️🤗

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Ranchu90
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24 Replies
Zebedee1971 profile image
Zebedee1971

Just as side note, most doctors/ivf clinics don't usually test for nk cells. You can get some basic ones done on NHS (I can hunt down in my file to tell you what these are but I'm pretty sure it's the ones on our list 4,5&6 possibly) but the actual nk cell testing is usually done by specialists, as the process is slightly different. They take your blood and put it into a pregnancy type state, then trial drugs on it to see if the drugs calm the nk cell activity. So you'll need to arrange this separately. So do get 4,5&6 done if you're heading down nk route as it will save you money in longterm. My ivf doctor from our NHS cycle arranged some of these tests on NHS so please don't pay out privately when you can get them for free, especially the blood tests, as these are so easily arranged. I can check in my file which ones should definitely be free xx

Ranchu90 profile image
Ranchu90 in reply to Zebedee1971

Thank you very much for your suggestions. As I moved from NHS to private, how can I go back to them to get a referral for blood test? Can GP also help?

Zebedee1971 profile image
Zebedee1971 in reply to Ranchu90

Yeah, you can speak to your GP and request some tests on the NHS. From my list, I can see the lupus and protein c etc, but they can also do basic nk cell count test on NHS. These are just to look at the numbers and can't be interpreted by your gp, but a specialist would know straightaway what to test for by looking at the numbers. So, for me, I have high levels of one type of nk cell which means the embryos get attacked at implantation stage. Some nk cells attack later in the pregnancy, hence why some women lose their babies in the first trimester rather than end up with chemicals. My specialist looked at my NHS results and saw high numbers in this area so only did tests for that, so it wasn't as expensive as it could have been. Funnily enough, I even googled the results myself (amazing what you can find online nowadays!) so I already worked out some of my levels were off, so I knew the specialist would find something. And when I spoke to him he confirmed what I'd already learnt myself.

Ps: I just saw someone saying their consultant has said nk cell research is bull***t. I'm currently 7 weeks pregnant for the first time ever, 8 week scan next week, under the treatment of an amazing doctor who has spent the last 20 years of his career helping people like me have children. I'm proof the medications work- we had a strong heartbeat and are optimistic for the first time ever.

Obviously, you might have completely different issues, might not be nk cells at all. But I know I wouldn't be pregnant without the tests we had done. I do feel quite strongly about this as you can probably tell! I hope you get something back from all the tests you're going to have done, I know I was so relieved when we finally got an answer and I hope yuo get an answer too x

Ranchu90 profile image
Ranchu90 in reply to Zebedee1971

I completely relate to your reply. I truly believe that NK cells is not what our sick minds are imagining, this is something that needs to be addressed and investigate. That is the reason for me choosing to speak to our doctor about it. I don't want them to focus on embryo implantation process when we actually need investigation on why my embryos are stopping to develop after few days from implantation. As you said it might not come from NK cells but is a step that I don't want to skip despite the cost involved. I prefer to pay 520 euro for NK cells checked instead of paying 7000 euro for a full cycle that may fail as well. Thank you for your reply and enjoy your pregnancy ❤️🤗

Zebedee1971 profile image
Zebedee1971 in reply to Ranchu90

Do call and ask your doctor for a full nk cell count-- like I said, it's free on NHS, and you can take these results to a specialist later on. I might also be able to compare your results to mine and see if there's similarities. You can also Google the results - I learnt so much from just that one piece of paper, amazing what you can find online, x

Millbanks profile image
Millbanks

Hi lovely, so sorry you're going through all of this. It's so unfair. I had an operative hysteroscopy done to remove a known polyp, which I think was in the region of £1900 privately. I haven't had any of the other tests done, but I did have the ERA/ALICE/EMMA done (still awaiting results). I asked about NK cells and my consultant said it was completely up to us but in her opinion there wasn't enough research or controlled tests to give it any gravitas (in her words it's bull****) so we opted out as it was an extra £250. xx

Millbanks profile image
Millbanks in reply to Millbanks

Side note: my hysteroscopy was general anesthetic as they knew they had to remove the polyp - without the GA it would have been roughly £1100

Ranchu90 profile image
Ranchu90 in reply to Millbanks

Thank you for your reply. I had ERA test done in August, but not ALICE and EMMA . How expensive is here Hysteroscopy!?! My clinic said 1100 euro under general anesthesia and 110 euro with local anesthesia. I didn't expect to be that cheap, but of course I am happy to hear that. It means I will need to fly again to Spain to have it done 😤🥴

Millbanks profile image
Millbanks in reply to Ranchu90

I know! Everything is so expensive here :( I think the ALICE can be good to check your levels of good bacteria in the uterus, so might be helpful? Sounds like a little trip is in order - well worth it I would say! xx

Ranchu90 profile image
Ranchu90 in reply to Millbanks

I am that kind of person which wants to do all the tests just to get the bottom of the problem. I thought that we will be an easy case to sort out because we have male factor infertility which can be sorted using ICSI but apparently I was wrong 😤🥺

Millbanks profile image
Millbanks in reply to Ranchu90

Oh hun - it's so frustrating. I thought we'd be fine first transfer as we don't have any fertility issues except that my tubes were blocked. How wrong was I too! Starting round 3 and not much closer to knowing why it hasn't worked so far! I also want to know why, I need all the info which I think winds up my clinic but I just want to understand what isn't working. xx

Ranchu90 profile image
Ranchu90 in reply to Millbanks

I am so sorry to hear that. I can understand your feelings. Everyone is happy when they see 2 lines on HPT, I am the only one looking numb at them. I cannot be happy, I cannot enjoy, I cannot have hopes ... I am only worry that next day will fade away, I will have another chemical, i will not make even to our test day, I will start spotting and so on... I am fed up but will not give up 😂😬 oh how crazy this sounds

Millbanks profile image
Millbanks in reply to Ranchu90

I hear you! We're the same - we will keep going until it works!! xx

Hey Ranchu. Im looking into gynaecologist (private) at the moment in uk to do some tests and asked my endo what tests from his perspective are needed to be done by the gynae. He asked if i ever was tested for lupus anticoagulant or any autoantibodies? Perhaps he asked given i have autoimmune thyroid. I know you were on steroids. Would be good to ask your clinic what different approach will they take if nk cells are positive cause you already are on a autoimmune protocol if i recall correctly xx

Ranchu90 profile image
Ranchu90 in reply to

Yes, I had immuno suppressants prescribed but in a very small quantities just 4mg/ day. I will definitely ask about NK cells as they didn't mention at all on my list for tests and I am wondering why!?🤔 I would have added it on the top of the list followed by hysteroscopy and thrombosis. If your are looking at &6 (on my post) this is what what clinic also asked me, lupus and coagulants. Keep me updated with your list of tests, I am very curious xx

Peanutchips profile image
Peanutchips

Hey lovely, sorry to hear this. Heartbreaking. Have you done an ERA test? Potentially with Alice / Emma tests done at the same time? X

Ranchu90 profile image
Ranchu90 in reply to Peanutchips

Yes I had ERA test done but not ALICE or Emma. I will ask tomorrow my doctor what she thinks about them...

Peanutchips profile image
Peanutchips in reply to Ranchu90

Also, did you PGS test the embryos? X

Ranchu90 profile image
Ranchu90 in reply to Peanutchips

Yes, we have 3 frozen embryos left. 2 normal and 1 mosaic. We tested them after having 2 chemicals as I thought that we are not producing chromosome normal embryo. Last transfer was PGS normal embryo that ended exactly in the same way as previous 2, just like a Deja vu 🙄🥺

Maisie234 profile image
Maisie234

I'm in the same boat, trying to get these tests and the cheapest I can find is over £1K, another clinic £1.5K in the UK. My ivf clinic is in Spain. It's so ridiculously expensive!

My Spain clinic have suggested getting bloods in the UK and sending to them abroad and that way it would be cheaper. I don't know if that's an option for you. Find the cheapest place and send bloods?

I see some people have had NK cells done through their GP, so I'm definitely going to ask that too. I think it's worth having all this done. When we go to this much effort, what's another important test. Good luck, x

Maisie234 profile image
Maisie234 in reply to Maisie234

Oh and hysteroscopy I've found out is anything from 2K-5K in the UK. I've an appointment with the GP and a letter from my clinic to see if I am entitled to it for free.

Ranchu90 profile image
Ranchu90 in reply to Maisie234

Our clinic is in Spain as well. I did lots of researches here in UK and I couldn't find anything cheaper or at least same prices as our clinic in Spain. I can pay even a bit extra taking into consideration that you need to fly or do a Covid test privately. Here only hysteroscopy is 1000£ and most of the clinics are doing the procedure under general anesthesia, that is why it costs so much. I will speak to my GP as well, maybe I can have some tests done for free. In case you will find something at a reasonable price please let me know. Thank you! ❤️🤗

Maisie234 profile image
Maisie234 in reply to Ranchu90

I will do. Same to you if you find some way cheaper let me know! XX

ttcemmie profile image
ttcemmie

Hi Ranchu. Sorry you're going through this. I can't advise on the other tests, but I did have a hysteroscopy in January (feels like years ago!). It was for a polyp investigation. My clinic did hysteroscopies for £800, but wouldn't see me in case they needed to remove the polyp (which they don't do), so the other cheapest clinic I could find was £1k, I think. However, I could have got this on the NHS, but it was going to be over 6 months wait (would have been even longer now with Covid, I imagine!). It's just costs costs costs with this IVF stuff.

So glad you're looking in to the reasons and doing the investigations that you need. Wishing you all the best. xxx

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