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Misdiagnosed after IVF with low HCGs

PostPosted: Tue Sep 23, 2008 9:56 am
by mnh88
Hi there -

I recently went through a misdiagnosed miscarriage. I found your website during it all, and it gave me hope that got me through it. I wanted to tell you my story so others are aware that low HCGs may not mean a non-viable pregnancy! Here's my story...

I'm 38 years old and have been "infertile" for 4 years. My husband and I tried 1 unsuccessful IVF cycle and then got pregnant with our 1st daughter on the 2nd IVF. 1 year after her birth we decided to try again (I'm not getting any younger!) because we really wanted a sibling for her. We had 1 failed FET (frozen cycle), then another IVF cycle which didn't work, and another FET cycle that didn't work. Our 4th (and FINAL) IVF try was in June/July. We decided beforehand it was our last try regardless - emotionally and financially we couldn't do anymore.

My last period (LMP) was June 20th. My embryos were retrieved (and thus, conception occurred) on July 2nd. Because this was IVF, there was no doubt about the date of conception!

On 7/16, 27 days after LMP (4 weeks after LMP), my HCG # was 29. The doctor told me it was VERY LOW so I was technically pregnant but wasn't looking good. He told me to continue my IVF drugs (progesterone) and come back in 2-5 days later. He said low #s are OK as long as they double every 48 hours.

On 7/21, 31 days after LMP (4.5 weeks after LMP), my HCG # was 45. It didn't even double after 4 days... and was still very low. So at this point, he told me it was a "non-viable" pregnancy and I should stop my IVF drugs. He told me I didn't have to - it was my choice, but he's never seen #s like this ever continue on. So, I stopped the drugs.

1 week later, on 7/28 I went back in for a blood test. No bleeding yet. My HCG # was 365 (5.5 weeks after LMP). He told me it was still a non-viable pregnancy and to come in next week to "follow the miscarriage through". He decided to do an ultrasound (next weeK) to see if it was ectopic since that can cause rising low numbers. I went online after this appt and found 10+ websites w/HCG ranges of healthy pregnancies. Mine were low but did fall into some of them... that gave me hope. I also found the misdiagnosed miscarriages website which also gave me hope.

1 week later, on 7/31 (6.5 weeks after LMP) I went back in for a blood test and ultrasound. No bleeding yet... and I was FEELING pregnant (peeing a lot and having wild/vivid dreams!) The ultrasound showed an empty gestational sac (and funny shaped as well.) So again, the doctor confirmed it was a non-viable pregnancy and told me to come back next week to confirm "no changes" via an ultrasound. Good news it wasn't ectopic. Then they called me that afternoon to tell me my HCG # was 645. Up again but still VERY LOW for the age the embryo. At this point I was ready to give up. I went out with a girlfriend and had a few gin & tonics and golfed 18 holes to get my mind of things. I needed to just "release".

1 week later, on 8/6, we went in for the confirmation of our empty gestational sac. To EVERYONE's surpirse, there was a heartbeat. You could have heard a pin drop in the room. The doctor and ultrasound tech were dumbfounded... not to mentioned my husband and I (why'd I have those gin & tonics???) However, the fetus was measuring 2 weeks too small so the doctor said our odds were 'better' but still not good because of the small size. They didn't take blood this time (didn't need to?) but told us to come back in 1-2 weeks for another ultrasound. The doctor told me so start up my progesterone again, just in case...

On 8/18 we went back in for another ultrasound. To everyone's amazement, the heartbeat was still there and the baby 'caught up' in size... was only a few days behind now. At this point, he said I had as good odds as anyone my age (38) and that I should go to my OBGYN now (this was the infertility doctor I was seeing). My husband and I left the clinic astounded, shocked, excited, and scared.

As of today, I'm 13.5 weeks pregnant. We had our nuchal? screening and our odds of downs and trisomy 18 are low. Everything is looking great, and my pregnancy is doing well. It's still early and anything can happen... but having made it this far is truly a miracle.

What makes this even more amazing, besides the low HCG #s, is that I STOPPED my progesterone. When you go through IVF, they "suck" out the eggs from your ovaries. Doing this also sucks out the fluid that triggers your body to produce progesterone (this is how the nurses explained it to me) so that's why IVF patients get progesterone shots afterwards -- because many of them won't produce on their own... and if they do, it may be low for some (because of our infertility.) SOMEHOW, my body knew to keep producing progesterone and support this pregnancy, even after I stopped my shots. Not all women would have been this lucky -- they would have miscarriaged a perfectly healthy fetus because of stopping the shots.

Although my doctor misdiagnosed my miscarriage, he never mentioned D&C... as a matter of fact, when I asked he suggested we let it pass naturally. So kudos to him to not rush to judgement in that regard. FYI: The clinic is now changing all their protocols because of me - what they consider healthy HCG levels (or atleast, HCGs with potential.)

I'm telling you this story for 2 reasons:
1) I hope that other women out there was obscenely low HCG #s know that it CAN happen. Odds are still slim, but it CAN happen and they should hold out hope until they know for sure.
2) I hope that anyone going through IVF that is told to STOP their progesterone doesn't until they know FOR SURE there is not a viable pregnancy (no heartbeat at 11/12 weeks.) Getting shots suck but in the long run, it might be worth it.

All in all we've went through 4 IVFs and 3 FETs. Not cheap... but luckily we've had the resources to afford it. Having a beautilful 20 month old and *hopefully* another on the way, I'd do it all again in a heartbeat.

PostPosted: Tue Sep 23, 2008 3:08 pm
by Kay
Thank you so much for sharing your story. I love reading this story and I know it will help so many women.


PostPosted: Tue Nov 04, 2008 5:30 pm
by SThomas
Wow, thank you for sharing this story. I just was dx w/ blighted ovum yesterday at 6w 4d after my 5th IVF (1st frozen). Dr. said he saw a small ges. sac for it's age, right where it should be, but no fetal pole or fetal cardiac movement. He "recommended" D&C so we can try the rest of our frozen embryos makeing for #6! I have chosen to keep taking my estrogen and progesterone and immediately called my GYN who ordered a HCG. RE didn't even do a HCG! My number on 11/3 was 5194 (low for 6w 4d -- but I suspect possible implantation 1 week later than expected due to mild spotting issue). Your story gives me TRUE HOPE and sounds more close to mine than other's I've read.

THANK YOU! Might I ask how you are fairing now?

PostPosted: Tue Nov 18, 2008 11:22 pm
by lilbee84
Hi Mary,
It is amazing how much your story is almost identical to what happened to me three years ago. I had betas doubling at about 141 hours, so it was not looking good. Then at the first ultrasound at 6w, all the RE saw was a 7mm sac which he said was too small. He basically told us to go home and wait for the miscarriage - call them when i start bleeding and cramping. He gave us a 1% chance of a viable pregnancy. One week later, we were completely surprised to see a heartbeat and fetal pole measuring 1 week behind. At nine weeks, everything had caught up!

I remember scouring the web at that time looking for any success stories to give me hope since 1% doesn't give you much to hang onto and the wait was excruciating and lonely. Well, now my 1% is sleeping peacefully next to me and will turn two in a few months. :-)

Congrats on your pregnancy! I hope you have treasure this time and have an easy pregnancy and delivery!

PostPosted: Thu Nov 20, 2008 11:33 am
by peacefulmommy
I love to read that the Drs are changing their protocols because of these kinds of cases. If my pregnancy ends up being viable I intend to make sure there are procedural changes at my Dr's office, as well.

I'm still prego - 30 weeks now

PostPosted: Mon Jan 19, 2009 5:28 pm
by mnh88
Just wanted to update you all. I haven't checked in for a while and just did - saw some replies.

I'm 30 weeks prego now and doing great. I've got a little boy and he's measuring long/tall for his age, so that is great. I've got placenta previa so I'll probably have a C-section at 36-37 weeks (which is fine with me... the sooner I can meet this little guy the better.) I've had a lot of ultrasounds (because of the previa and IVF) and the baby is looking healthy.

I'm glad to see my story has helped some folks.

Wish me luck that the next 2 months go as planned...

PostPosted: Wed Jan 21, 2009 6:38 pm
by Kay
Thanks for the update and congratulations on your little guy. How exciting that you'll get to meet him in the next couple months.

I cannot get over how many women are misdiagnosed after IVF. I'm really a firm believer that women should hang in there and verify the diagnosis because they are much too frequently misdiagnosed.

PostPosted: Thu Feb 12, 2009 2:56 pm
by hillb98
Thank you for this post; I am currently 8 weeks pregnant after IVF. My BETAs were all good, but at my first u/s at 5w4d they told me I was measuring small (just under 5w) and they wanted a repeat in 2 weeks. 2 weeks later (2/9) I went back and saw a heartbeat which they said was a "positive heartrate" (never gave me numbers!) however they were concerned because now I was 7w4d and only measuring 6w. DH and I were devastated...doing all the research we can. RE said chances are 50/50. We have to go back on 2/18 for another u/s. I still feel pregnant, and have positive thoughts, but this story helped me even more. I guess I'll update next Wed.


PostPosted: Mon Mar 02, 2009 2:30 am
by Sass
Hi Mary

Thanks so much for posting your story. After IVF I have had very similar HCG levels to you - I wonder if you know what your progesterone and estrogen were during those early weeks?

My last HCG was today (6 weeks exactly) 405 - it's just been slowly rising for the last two weeks.

But my progesterone has fallen to 45 from 111 two days ago and the 200's a week before that. Likewise my estrogen has fallen.

I'm feeling premenstrual rather than pregnant now and my FS is certain this is not a viable pregnancy. But I'd be keen to know of your other hormone levels if you happen to know them.

All the best for the birth of your miracle baby. I'll look forward to reading of his safe arrival


PostPosted: Thu Mar 05, 2009 10:00 pm
by alkalinelife421
best of luck on your soon to be angel baby!

He has arrived!

PostPosted: Wed Mar 11, 2009 8:14 am
by mnh88
My little non-viable pregnancy/miscarriage has arrived!! His name is "Jack" and he weighed in at 6lbs 6oz, 20" long. He's a healthy little guy and we are thrilled and so thankful to have him. He's truly a miracle and it shows you - miracles DO HAPPEN.

Good luck to everyone who has read this post or posted a reply. Though your story may not end as mine (though I hope it does), I wish you future success in your family building.

PostPosted: Wed Mar 11, 2009 11:19 am
by Kay
Yay!!! Congratulations to you. I love hearing these updates. They really brighten my day.

PostPosted: Mon Mar 23, 2009 9:50 pm
by morgan617
Congrats on your new little arrival. Your story has given me a glimmer of hope. My situation is very similar to yours. I am 5wks 2days and my beta was 293 today, after slowly rising and also declining on saturday. My RE say s it is definitely a non-viable pregnancy and wants me to stop meds, but I am going to keep taking them. I go back on Friday for another beta and u/s. He wants to rule out ectopic. I have no cramps, no bleeding and I feel pregnant.

How are things, did your pregnancy progress?

Thanks for giving me hope,


PostPosted: Wed Apr 22, 2009 6:49 pm
So here's my story...I found out i was preggo the day before my expected period so u can say i was nearly 4wks preggo. Of course as soon as i found out im preggo (less then a week r so later) i strt bleeding. At first it started off lite pink and it was jus spotting. No worries! Then at da strt of the day it was bleeding heavier and then i strtd to have CRAMPS! = ( Worried now! Bleeding and Cramps r not preggo women's friends! So i went2 da doc this pass mon and they couldnt c anything n da u/s except white which she said may b da bleeding. So then i went and got my hcg levels tested and then wed again. On thurs i never got a formal call telling me my results so i calld...the advice nurse on da phone said my levels went 4rm 60-40! OMG! NOOO! My boobs no longer ache and i never really had strong preggo symptoms to begin with. I can sleep the day away tho (sleep at 12am and wake up at 12pm!)

Sooo...i dnt 100% trust wat doc's say. But on my appt on mon they gav me a follow up appt on da 21st. And b/c of my hectic day i didnt kno wen my appt was but surprisngly on thurs i got a mailed appt for da 29th ( my original prenatel appt) So curious I calld da hospital today to c y was it changed and wat kind of appt it was. (I was figuring if i had a mc then they wouldnt wait till da 29th AND if the appt was a pre-natel appt still THEN possibly i didnt miscarry) Of course da nurse on da phone cant giv me da answers so I tryd to mak sure i kept my phone on me 4wen my obgyn doc calld. OF COURSE i miss da call and he doesnt say da results on da phone (he rather "talk to me personally") So now im here on dis website lookn 4ppl who had misdiagnosed mc.

This my 3rd pregnancy and they all wer diff, the past 2 ended n mc. (i have a bicornuate uterus) Over this past wk my stomach has been a little im really confused...a lil bloating is popping up again which is so uncomfortable! My appt is on da im jus praying to God for da best! im only 22 but im married and dis was a PLANNED pregnancy and I really want my baby! Ill keep u guys updated of course

Re: Misdiagnosed after IVF with low HCGs

PostPosted: Tue Feb 22, 2011 2:47 pm
by sarah_smiles
HI Mary,
I read your story 2 to 3 times per day to give me hope. I am in a similar situation with HCG numbers not rising appropriately, then my gestational sac measuring off, still no yoke sac, no fetus, no heartbeat and just waiting. The waiting is the worst. I don't even know if I can look at the screen next week for fear of that empty sac. It is like your in this holding pattern and life just keeps going on around you. Your story gives me hope and although I know it isn't the norm I want to believe it can happen to me too. Thanks for posting and I will continue reading until there is no hope left for my little bean.

Sarah :H

Re: Misdiagnosed after IVF with low HCGs

PostPosted: Tue Apr 05, 2011 1:24 pm
by Aga
Mary, thank you so much for sharing your story. I am after first HCG test that is at 17 on 14 day after transfer. I will have my 2nd beta tomorrow, April 6th and hope it doubles. I started talking to my babies and tell them how much they are welcomed. Wish you the best

Re: Misdiagnosed after IVF with low HCGs

PostPosted: Sun Sep 11, 2011 12:40 am
by Martee
I know your posting is a few years old now but I wanted to say thank you for sharing story. My fiancée and I have been trying for over a year to get pregnant. This was our 3rd IVF attempt and finally got pregnant. We were elated! Then after 2 days of enjoying our happiness our RE called to tell us our betas were not good. My HGC levels were not doubling in 48 hours therefore this was not a viable pregnancy. She said if my level don't rise to 150 within the next 48 hours, I was to stop progesterone and wait for miscarriage. My next HGC levels resulted in 142 and I was told to stop all meds and there was no hope. I was devastated. I couldn't get over the fact I was so close to that goal of 150 yet told to stop all meds. It just didn't seem right to me. I searched and searched for hope and found this web site- specifically, Mary's story. I decided that I would not stop my meds until a sonogram confirmed definitively. One week later, we did the sonogram and nothing was visible- no sac, no yolk, nothing. At that point I decided to stop all meds. God had made His decision and I needed to move on. I had 3 more sonograms afterwards because my levels kept increasing yet still nothing- not even a gestational sac could be found. My doctors were so confused. It took a week but right at 7 weeks I started miscarrying. Three days later I had very intense cramping and while in the shower I actually passed my almost-babies' placenta. I could't believe it! Nothing could be seen through the sonograms
yet there it was. I could even see the thread like umbilical chord inside it. This for some reason gave
me such peace. There was something in there after all.

Overall, I'm so grateful for everyone sharing their stories and experiences. By not stopping my progesterone until the sonograms, I have a clear conscience that I did all I could for my baby. I have learned so much from all the stories on this site like Mary's and have shared it with everyone I know. Doctors seem to be so quick to terminate pregnancies - it's scary. I'm grateful that my doc did not push a DnC or abortion pill. All the opposite- she waited for it to come on it's own and thank goodness she did.

Thanks for letting me share my story.

Re: Misdiagnosed after IVF with low HCGs

PostPosted: Mon Oct 17, 2011 8:52 am
by summiee
hello and thankyou for sharing your story
i had a scan today and was told my "sac" was too small about 1.5-2 weeks behind. i should be 6 weeks pregnant according to my dates that are certain because i had ivf. I had a small bleed a few days ago too.
Your story is just what I needed to read to give me hope after coming back from the hospital today so confused, upset and exhausted so I thank you for giving me hope.
I wanted to ask you that if the embryo is too small for the dates and there is evidence of quite a bit of bleeding (also another worry they said although the nurse also said that she has seen this bleeding in scan in people going on to have normal pregnancies) on the uterus wall although i have only had that one small bleed can i still have hope?
She said that the reason i havent bled out much is because its being reabsorbed.
my hcg was just 44 on day 16 after conception (egg collection)... i have had blood taken today and will repeat in 2 days.
i cant think straight and just want hope.

Re: Misdiagnosed after IVF with low HCGs

PostPosted: Wed May 09, 2012 11:28 am
by helene
My story:

Hello, I am so happy I found this site.
I have beautiful 21/2 yo twins by ivf.
We wanted 1 more baby so here we are.
LMP: 4/2/12
Transferred 1 beautiful embryo (3 day): 4/17
Started light spotting 4/29
1st hcg= 48: 4/30
1st thing nurse said it is positive but with a low number...may not be viable pregnancy.
2nd hcg= 70: 5/2
Not hopeful but we will continue to monitor & she mentioned it could be ectopic with those low numbers.
Wow, I thought how could that even be possible but it can
happen. Still trying to maintain optomistic.
3rd hcg= 106: 5/4
It is not doubling like it should, shy of 60-66% . At this
point I felt devastated & felt like it was over.
4th hcg= 226: 5/6
Went to RE & they did ultrasound. Of course to early to
see anything. No fluid or blood near tubes/ovaries -slight
chance of ectopic.
Doc still sounded a little hopeful & they will keep monitoring. My mom kept hope & prayers even though I had given up. So I started having hope again & am praying for a miracle baby. I also found this web-site on Monday & you gave me hope.

5th hcg=5/8: 294

This time when I got a call from the nurse she said it was a failing pregnancy & they wanted me to start tonight with cervadil to expel contents of uterus & if my numbers rose
then it was ectopic & then I would take methotrexate.
I asked if we could wait, I wasn't ready to give up yet. So they gave me 1 more day.

I wanted a 2nd opinion & called my OB. At 1st I gave my
background....they told me a nurse would call. Didn't hear back soon enough & I called back. I told the nurse my
cycle time, positive pregnancy test & I was bleeding &
worried about a miscarriage. She said it was normal to bleed early in pregnancy. It is too early for scan but they
will do blood hcg. I asked what numbers cou be & she said numbers & also said even in the 200's. Well,
I went & got my blood drawn=349

They want me to return in 48hrs.
I will take todays hcg @ lunch for RE.

I am waiting my 48hrs!!! Will continue progesterone as well.

Any thoughts????

Re: Misdiagnosed after IVF with low HCGs

PostPosted: Wed May 09, 2012 2:52 pm
by helene
The Lord has heard our prayers & our little beans number went up to: 434!!!!
The RE nurse spoke to doc & they still suspect ectopic (which it is not!!) but want to do an ultra sound.

I am going to get my blood drawn @ my OB tomorrow during my lunch break and it is going to double!!!