Low HCG levels and ongoing pregnancy

[GoldJules]

Hello! I had my 5th embryo transfer in September, and got a faint positive test - did a few more - still quite faint, and decided to get a blood test to see what was going on. 14 days past a 5 day frozen embryo transfer, my hcg was 124. That was on a Thursday afternoon, and when I did another test on Saturday morning (around 42 hours later) it was 224. I did another urine test where the test line is much darker. My clinic advised me that as my hcg was low initially, the pregnancy is unlikely to continue. I guess I'm trying to prepare myself for a miscarriage - but wondered whether anyone had been in a similar position, and had an ongoing pregnancy? Thanks!

@GoldJules
Hi, I have a similar but different experience.
When I fell pregnant with DD, my pregnancy tests were always very faint positives. I was seen by my consultant very quickly - within 2 weeks of my missed period (diabetes), they done their own pregnancy test and again it was very faint. They done an ultrasound and my uterus was 'empty'.
I was told it was likely I was having a chemical pregnancy and, in their words, they "treat me as if I was pregnant until I bleed" which absolutely crushed me. No bleeding occurred and at 8 weeks they done another ultrasound - there she was!
I've got a healthy 3 year old now from what I was told was a chemical pregnancy because of how faint my pregnancy tests were. Whilst I don't know the official numbers in terms of hcg, i had low levels.

Fingers crossed for you! X

@FigBatSue same thing for me, except no diabetes... @GoldJules I was told very recently, at the beginning of this pregnancy, (I'm 13 weeks now) to expect a miscarriage because my levels weren't doubling, but was then told by a fetal medicine specialist shortly thereafter that the recommend increase in HCG is now only 35%, not doubling like we've been advised in the past. My hCG was only going up by 36% and the Dr. told me to relax that there's every possibility that my pregnancy will continue, and this was after three other doctors had told me that I was going to miscarry... I'm 13 weeks with a little girl and they weren't even able to see her on US or hear her heartbeat til 7 weeks so try to stay positive...

@FigBatSue thanks for your message - I really appreciate it. I was absolutely convinced I'd had a chemical pregnancy, and had resigned myself to it - but then the tests started getting less faint, but then the hcg levels came out low. I now wonder whether it's ectopic - but who the freak knows eh? I have a scan in just over two weeks. Whilst it's tempting to keep tracking my hcg - I think it will drive me a bit loopy and also it's £60 per test! So I am going to try and hold out until the scan - if the pregnancy makes it to that point! I'm so glad to hear that it all worked out for you!

@Releasethehoundss Thanks for your message as well! It must have been really reassuring when the doctor told you to relax and that there was every possibility that the pregnancy would continue. My heart sunk when the clinic said it was unlikely. And because I've gone through IVF (because of having a female partner), I'm on medication - which I might, or might not, bleed through if I have a miscarriage - so I might not even know if I've had one! It's going to feel like a long two weeks till the scan, so trying to keep myself distracted. Congratulations on reaching 13 weeks with your little girl! x

Yes me - HCG levels weren’t doubling and I was told the pregnancy was “unviable”. Early scans were also inconclusive, and the Harmony test didn’t work either. I spent the first 20 weeks waiting to miscarry. Much, much angst later and I have a lovely healthy girl!

@Rach247 Thanks for sharing this! That's very heartening to hear. It's so hard isn't it, balancing hope and fear? Every time I go to the toilet (which is about every 30 mins at the moment!) I am preparing myself to see blood. I'm going to try and let go of that thought, but it's so hard!

@GoldJules I had bleeding a few times from 5 weeks on, and after several miscarriages I was hypersensitive and constantly expecting the worst. That coupled with the fact that transvaginal ultrasounds were only able to see the gestational sac one time, and never again after that (I have a very tilted uterus) I had doctors telling me over and over again after my bleeds that I had miscarried... Except the hCG kept rising... At 7 weeks a specialist clinic was able to find her and her heartbeat exactly where it should have been, when the same day my reg doctor could not, using the same kind of machine... It was so nerve wrecking being told to come back week after week to test and see if the ultrasound could find the fetus. We were only ever able to glimpse her on an abdominal ultrasound lol... She's a character.
Best of luck to you and your wife and I hope you two have a successful and healthy pregnancy.

@Releasethehoundss That sounds like it was profoundly difficult. I can't imagine how hard it must have been to get through that and I am so glad that everything worked for you. I think I have a titled (anteverted?) uterus too - so I wonder if I'll have the same thing. Thanks for your well wishes!

Very best of luck with it. Keep us posted, I’ll be thinking of you.

@Rach247 Thanks! I definitely will. I am almost 6 weeks now and I really don't feel anything (apart from perhaps being a touch more windy and going to the toilet a bit more) so I really help everything is okay down there!

I thought I’d update. I had a scan this morning and sadly it wasn’t great news. It was a “Pregnancy of Unknown Location”.
Which means it’s either too early to show up, miscarriage or ectopic. I’m still getting positive pregnancy tests, but obviously that could mean absolutely nothing. I’m being referred to the Early Pregnancy Unit, so we’ll see but I very much doubt it will be good news. I was expecting it, but I still had a good cry and feeling sad x

Oh no, I’m so sorry to hear this. Really, really rubbish news. I hope you have lots of support around and give yourself time to feel shitty. It’s amazing how much future planning you do the second you see that positive pregnancy test, so it really doesn’t matter how early on you are. It hurts and it’s shit and I’m sorry.

@GoldJules I have a thread on here (it's too much to go over, really without hijacking your own) and your story is exactly how mine played out. After the second time the same Dr. told me she could not see anything using the transvaginal ultrasound, she told me my miscarriage was 'complete'. And sent me for blood work in the lab. She told me to come back to her office and wait for the results because she had put a rush order on it. I waited almost two hours and could not stand to sit there while heavily pregnant women walked in and out. I told the desk I needed to leave and asked them to have the Dr. call me with whatever results and what our next steps were.
She called me on the way home to say my levels were going up and that I had a PUL... Said that if I had any pain or bleeding to go to the ER because it could be life threatening... The very next day I did just that... Went to the hospital near me because I was having pain and cramping...
They did a transvaginal ultrasound and there was a 12 mm geststional sac exactly where it should have been.. For some reason (with the exception of a skilled radiologist) the only two times my baby was EVER even glimpsed on TV ultrasound was both times I presented at that hospital, and no other time... They saw the sac at 5 weeks then again at 6. (Again, I have a very titled uterus). But even as my pregnancy progressed two other clinics were unable to locate her at ALL using TV ultrasound...
When I saw my dr a week later, at 7 weeks she AGAIN couldn't see my pregnancy on TV ultrasound... She told me in front of my husband and another Dr. that my miscarriage was definitely complete and she'd get more blood work because my levels should be dropping by then. I had given her staff my ER report from a week earlier, and she wasn't even going to look at it until I mentioned it! After reading it she sent me upstairs to radiology, for what she called a 'tie breaker'. She said she'd call me with the report.
We were eating lunch about and hour later when she called to tell me there was a viable pregnancy of about 7 weeks etc. etc - sac, pole, heartbeat and all. And had absolutely no explanation for why she and other clinics using other machines could not see baby. I never did get a suitable answer, either.
I'm not telling you that's how your situation will play out, I'm just saying that I was 100% defeated and thought another pregnancy was gone... And the back and forth was seriously starting to depress me... But nobody at all could relate and nobody could give me any hope so I just wanted to tell you that I've been there so don't count yourself out, yet.
Almost 15 weeks now and have now seen her on abdominal ultrasound and she's in there moving and kicking.
I will say it shook my confidence in the Dr. because when I pressed her ass to why she said my pregnancy had ended and how an ultrasound tech had found it the very next day, not even 13 hours later, she only said that pregnancies grow over time... I said fair enough but why then a week later did she STILL not see anything and not 30 minutes later a radiologist did... I don't blame her I blame my stupid body, really. But it was so confusing and depressing the entire time. Hang in there some more and please come back and update us or if you need to talk.

@Rach247 Thanks for this - really kind of you

@Releasethehoundss Oh my - what an ordeal you went through. I am allowing myself 0.5% hope - but really I feel like this round is probably over for me. I really don't feel any physical symptoms, apart from weeing a lot! It's very sad because we're going through IVF so its not only emotionally draining - but it's so freaking expensive, and it's so hard to make a decision to stop trying. Im 42 as well, so was delighted that it might have worked. My partner and I are both going through treatment, and she has also just miscarried. So having gone through the excitement of both being pregnant at the same time, we are both now counselling each other through all of this. Pretty rough. BUT thank you for sharing your story, and it does give me a shred of hope. I am trying to chase up my referral with my EPAU, as I still haven't heard from them - so will continue to do this and see what unfolds! Thank you for your kindness xx

Oh goodness, I am so sorry to hear of her miscarriage. I am keeping my fingers crossed for you both that your pregnancy sticks and you two can become mommies. I am holding onto hope for you but if it's not meant to be this cycle then I hope it happens soon (if you're planning on still trying). Im going to keep positive thoughts for you both, I know this isn't easy in the least ❤

@Releasethehoundss I hope its okay to update you on this. I went to the EPU this morning, and they said they wouldn't be scanning me - which I was fine with at the time, as it seemed like it was done deal that it was over, but they did say that they'd take my bloods and then again on Thursday (depending on the results of the bloods as if the hcg was very very low, there would be no point in coming back in). They said to come off my medication, which my private clinic concurred with. They also said that the threshold for picking up anything on a scan was 1,500 hcg, so suggested I must have been under that. They called me this afternoon, and said it was 2,700 - which I know is an increase on last Tuesday (as I did a clear blue digital test, the threshold for 3 weeks + is 2,700, and I was only showing 2-3 weeks then). I know 2,700 is still very very low for 7 weeks, but I feel like I might continue my medication until Thursday when I'm tested again...

@GoldJules it's wonderful you've updated us here. I'm always glad to hear you and your Mrs. have still got some hope. My hCG was only incresing by 36% and 40% at a time, it NEVER doubled. Definitely continue your medication. There is such a HUGE discrepancy in hCG levels that, although I'm not a doctor, I have only experienced my own pregnancy continuing whenever I was told my hCG was too low, I had miscarried, etc.
Thursday is only two days away, so if your levels are increasing still by at least 35%, I'd say you two still have a good chance at a viable pregnancy.
If I hadn't gone through it myself, I'd agree with what the doctors are saying every step of the way but some little ones do just defy all logic and odds. I'm keeping my fingers crossed for you both and I really hope you get some good news. ❤

@Releasethehoundss thanks for replying so swiftly!! I'd love to hold out hope, but I going to be careful not to hold out too much of it. I definitely don't want to jeopardise anything by not taking my medication, though. Thanks for your support!!!! xx

Did you get tested again today OP?

Yes, been wondering how you are getting on...

@Rach247 @Releasethehoundss thank you for checking in! So kind of you. So I had my bloods done again yesterday, and they had gone from 2716 to 2382, so had stopped increasing. I was expecting it, to be honest. But then - they said that they are not dropping as quickly as they would like them to - and said they expected an ectopic and asked me to go straight back in for a scan. At first I was like, oh but I i'm in a workshop , and then I am going to the dentist - can I come tomorrow? And they were like - you're at risk of an internal rupture, so then I came to my senses and went back in! They scanned me and said that it wasn't an ectopic (phew!) and they could see a gestational sac, but no baby. They said that the private scan clinic had most likely missed it - and probably because I do have an anteverted - tilted - uterus. I thought that was most likely to be the case. They did ask me to go back again next Thursday just to double check, and it was up to me as to whether I stayed on medication, but it feels weird not to?! Anyway, they stressed it wasn't a viable pregnancy. And I think that if the sac is there, but empty and the hcg levels are going down - they're probably right. Thanks for all your support. I'll probably try again in the New Year, and would love to keep you posted, if that's okay? xx

Please keep us updated. I'm so sorry it isn't turning out the way you (and the rest of us had hoped). I was really hoping for good news for the two of you. Please just take care of yourself and your wife and come back and update us whenever you seen to/are ready.

*need, not seen.

Yes, so sorry to hear this news. Would love to hear future updates. Look after yourselves and wishing you all the best.