HCG doing weird things - help?! - Fertility Network UK

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HCG doing weird things - help?!

Nightingale92 profile image
ā€¢19 Replies

Looking for some advice, or to see if anyone has had a similar experience. Absolutely going out of my mind here šŸ˜”

We had a 5 day transfer from ICSI on the 28th March (so 3 weeks ago). I got a positive at 9dpt, but started bleeding and cramping the same day. Clinic increased my progesterone, and told me to carry on testing. Tests kept staying the same strength - no progression at all. Spotting on/off. Eventually clinic agreed to do bloods - came back at 15ā€¦then 3 days later 14. Told me it wasnā€™t a viable pregnancy (which I already knew from lack of progression) and to stop progesterone. They were a bit concerned about how long it was taking for the HCG to fall, so asked me to repeat pregnancy test 5 days later and if positive still, to go to EPU.

Had bloods at EPU this morningā€¦.and theyā€™ve come back higher šŸ¤Æ HCG is now 198 and progesterone is 24 (in normal range for pregnancy). The nurse said she had never seen this happen before, and has no idea whatā€™s going on. She thought that maybe we could have conceived naturally after miscarriying the transferā€¦but we havenā€™t had sex since before egg collection!! So definitely not possible. The numbers make no sense for me being 6 weeks, so she said she doesnā€™t see there being a positive outcome from this. But she has no idea what kind of explanation there could be. So I have to go back to EPU tomorrow for a scan, and they will get some senior consultants involved.

Has anyone had anything like this before? I just feel so broken. I was finally starting to process it being an early loss and praying for that negative result so we could plan what we do nextā€¦but now Iā€™m still in this horrible limbo. I know it wonā€™t have a positive outcome, but I feel like itā€™s going to be a horrible drawn out thing and Iā€™m so confused šŸ˜”

Thank you in advance ā¤ļø

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zytajones profile image
zytajones

I'm so sorry to hear what you are going through. I think from what you are saying it does sound a bit you might have an ectopic pregnancy. I think they will know more once they will scan you tomorrow. I hope I'm wrong and you won't need to go through that (I had a really long and traumatic experience with ectopic pregnancy). Thinking of you xxx

Nightingale92 profile image
Nightingale92ā€¢ in reply tozytajones

Thank you. I thought that too. Although when I spoke to the clinic they said the levels were too low to even be ectopicā€¦?! They originally thought it was retained tissue - but then that doesnā€™t explain why itā€™s rising! So confusing šŸ˜” sorry to hear that you had such a traumatic experience xxx

zytajones profile image
zytajonesā€¢ in reply toNightingale92

Oh, didn't realize that as mine weren't too high either (oscillating between 550 and 800). I really feel you and pray that they will find an explanation really soon (tomorrow!). So you can put this behind you. xxx

Nightingale92 profile image
Nightingale92ā€¢ in reply tozytajones

Thanks so much! ā¤ļø Xx

Zoomm profile image
Zoomm

Wishing you all the best.

Nightingale92 profile image
Nightingale92ā€¢ in reply toZoomm

Thank you x

Klndmr profile image
Klndmr

Hey Hun I'm really sorry you are going through that. I've been in a similar situation two years ago. HCG dropped, then elevated again, then dropped again and then elevated again. It wasn't ectopic as normally they say with ectopic pregnancies numbers are very high when it comes to HCG. The doctor told me I had some retained tissue which was making the body think it's pregnant and to produce HCG. It took my body a month and a half to settle and bring the HCG back down to below 5. Just make sure they do regular scans and bloods until things settle.

Sending lots of hugs your way ā¤ļø

Nightingale92 profile image
Nightingale92ā€¢ in reply toKlndmr

Thanks so much for your reply. Iā€™m so sorry that you went through that šŸ˜” They originally suggested retained tissue, but after this blood test they seemed to change their mind. She said it had increased more rapidly and higher than she would expect for retained tissue. But there doesnā€™t seem to be any other explanation, so that sounds sensible to me! I didnā€™t realise it could increase like thatā€¦I thought it just prevented the HCG from going down. But that makes sense. Thanks so much for sharing your experience. It helps me rationalise what might be going on. I had retained placenta after my stillbirth a couple of years ago so maybe Iā€™m just susceptible to it. šŸ˜” xxx

Rhubarb5 profile image
Rhubarb5

Hello,

I'm so so sorry you are going through this. I did have something similar and it turned out to be ectopic in the end. I saw 4 different consultants who said different things - early miscarriage, ectopic, not ectopic but retaining tissue, and then finally definitely ectopic. I was in and out for scans and bloods for about 3 weeks before the final confirmed diagnosis and I had it treated then. It was very drawn out for me also and took 7 weeks in total to get down to 'non-pregnant' level. I hope you get some answers soon. Sending you strength. xx

Nightingale92 profile image
Nightingale92ā€¢ in reply toRhubarb5

Oh wow. Iā€™m so sorry you went through this. And itā€™s exactly what Iā€™m dreading šŸ˜”šŸ˜” the scan didnā€™t show anything and Iā€™m still waiting for my blood results from yesterday. I think itā€™s basically either ectopic or retained tissue - they keep changing their minds. Sounds like exactly the same happened to you šŸ˜” I really hope my body can resolve it on its own, but it isnā€™t looking likely. Xx

Lolepops profile image
Lolepops

I really hope you get some answers today xxx

Nightingale92 profile image
Nightingale92ā€¢ in reply toLolepops

Thanks lovely. Scan didnā€™t show anything, except that my lining was really thin so unlikely anything has implanted there. Still waiting for the blood results from yesterday. So frustrating. šŸ˜”šŸ˜” basically I think itā€™s a toss up between ectopic and retained tissue at the moment xxx

Alexm06 profile image
Alexm06

Hi! I believe I posted on your other post regarding what had happened to me. Im not sure if I mentioned it but Iā€™ll post it here (sorry if Iā€™ve already told you). After I called the epu with everything that happened I had a blood test and it came back normal range. I think it was like 1985 if im correct. I then had another one which obviously didnā€™t double and then I also had a third which was in the 3000mark but yeah didnā€™t double. Obviously we know how mine ended. Iā€™m praying itā€™s not the same for you! Did you get to have a scan? X

Nightingale92 profile image
Nightingale92ā€¢ in reply toAlexm06

Ah yes - you did. Thank you so much. But you didnā€™t say about the numbers of the high HCG so thatā€™s really interesting to know. They couldnā€™t see anything on the scan anywhere (even in tubes) but my HCG was only around 200 when they did the scan, and afterwards she told me they wouldnā€™t expect to see anything until it was over 1000 anyway. My uterine lining was really thin, though, so they think itā€™s unlikely anything has implanted there. I went for bloods again yesterday morning and they were supposed to call me in the afternoon to let me know results and next steps but Iā€™m still waiting to hear from them. So so so frustrating! šŸ˜”šŸ˜”

How are you getting on? Was your scan ok? Are you going ahead with another transfer? Xx

Alexm06 profile image
Alexm06ā€¢ in reply toNightingale92

Ohhh they didnā€™t say anything about my lining so I guess it wasnā€™t thin but then there was a tiny sak that started growing but was empty then it just got smaller. Oh god I hated waiting for the calls I ended up calling them at one point. So my scan I had 2 cysts this time so didnā€™t go ahead with scratch. They told me to come in on cycle day 1 or 2 to see if they had gone and if they were then I could start without the scratch or wait till next month but then another cyst might appear. So yeah went in on day 2 and they had gone! Well one had and one was collapsing so I started. Not liking the injections as much this time.

Hope you have got some answers! That was the part I hated I just wanted answers x

Alexm06 profile image
Alexm06

Hey. I was just wondering how did it all end? Or is it still ongoing? X

Nightingale92 profile image
Nightingale92ā€¢ in reply toAlexm06

Thanks so much for checking in. It was such a nightmare! My HCG went up,..from 14 to 191, to 446ā€¦so they started thinking it might be a viable pregnancy that just ā€œstarted slowlyā€. But then the next set of bloods was only 498 or something. So they made me pack an overnight bag and come up to the hospital (thinking ectopic). They couldnā€™t see any indicators of it being ectopic on a scan, so they sent me home again. The consultant I saw said that he thought it could still be viable and that IVF pregnancies sometimes ā€œdid weird thingsā€ šŸ™„ he said the low HCG and thin lining didnā€™t concern him (even though everyone else I saw had said it couldnā€™t be viable!!!). A few days after that I miscarried. I knew right away thatā€™s what it was. I was bang on 7 weeks. I had to keep going back for bloods to confirm, as they were still worried about ectopic (even though I knew Iā€™d miscarried), and it showed the HCG reduced from 498 down to 460 then 90ā€¦and then yesterday it was 8. So basically negative. They said they think it was probably in the right place and was trying really hard to grow, but something just wasnā€™t quite right. Iā€™m pretty devastated, but Iā€™m also so relieved that it wasnā€™t ectopic. Itā€™s such a weird mix of emotions! We canā€™t afford a FET any time soon (we spent all our savings on this fresh transfer and are Ā£4k in debt already from our house move). So we will need to save up for a few months before we can transfer our only embryo. Just really hoping this doesnā€™t happen again. šŸ˜” thanks so much for checking in ā¤ļø Hope all is ok your end xxx

Alexm06 profile image
Alexm06ā€¢ in reply toNightingale92

Oh Iā€™m so sorry to hear that. Itā€™s so horrible when they keep wanting you to come back do my tests leave come back. I have unfortunately had an ectopic before but was when I was 19 and didnā€™t even know I was pregnant until it was too late and had to have one of my tubes removed. Iā€™m glad you didnā€™t have to go through that as that probably would have made it a bit worse. This whole journey is expensive we have luckily only had to pay for a FET which they still havenā€™t asked the money for yet haha. Hopefully you will save up the money quickly! Well I had my egg collection Wednesday so Iā€™ve been a bit uncomfortable since then. They got 19 eggs 12 mature and 8 fertilised. Transfer booked in for Monday so will hopefully get some more frozen but yeah wonā€™t find out until then.

Look after yourself ā¤ļø

Nightingale92 profile image
Nightingale92ā€¢ in reply toAlexm06

Oh woww Thatā€™s amazing!!! We only got 2 mature and fertilised! šŸ™ˆ hope the transfer goes well! šŸ¤žšŸ„³ā¤ļø Xx

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