JB's Story -High hCG Levels and No Baby Seen

Have you had a misdiagosed miscarriage? Please share your stories here.

JB's Story -High hCG Levels and No Baby Seen

Postby Kay » Wed Feb 08, 2017 7:35 pm

(sent via email and asked to share)

Hi Kay -

I'd ask that you not use my real name, but thanks to your site, I so
far am continuing a normal and healthy pregnancy at 10 weeks now. My
story below in short:

I called to make an appt. at 5.5 weeks. They said I could come in the
following week. I was surprised since many of my friends were told to
wait until 8 weeks at the same hospital group. I mention this because
I wonder if being in so early was part of the problem.
The doctor, who was young, did a transvaginal ultrasound and said I
had a missed miscarriage. Obviously we were devastated. She went
through the list of things she did not see or hear - fetal pole, heart
beat etc. We told her prior - coincidentally - that I have an
retroverted uterus, which many on this forum report themselves. We
left, crying, and went to give blood for testing HCG levels. I'll skip
the part where I had to harass the office to call me back to discuss
the blood results. I'll skip the part of the trauma of crying on the
couch for five days, and drinking wine because hey, we're not
pregnant! ...
At any rate, I got the HCG levels back and they were very high. At 6
weeks and 5 days to 7 weeks (2 days aparnt) my levels went from 72,000
to 84,000. Within the normal range (you've probably all seen that
anywhere from 4 digits to 6 digits in your HCG level can be normal and
everyone is different). My levels were going up, but not doubling at
40 hours apart. The doctor said, "Your blood work confirms that you
are having a miscarriage." She knew that I was choosing the pills to
induce the miscarriage and not a D and C. She said I could come in to
pick up the pills from her.
Thank God for this forum. I'm going to sound snotty but don't mean to
when I say that I have a master's degree. I know how to do proper
research and what sources are considered trustworthy. It is incredibly
frustrating that there is practically no information from
science-based journals about these misdiagnoses. Although I'm hardly
surprised. I couldn't imagine that my doctor corrected her mistake and
logged it into some journal of medicine in order to share with the
medical community at large and really get some good stats going for
patients and doctors alike. I wish it were being handled better.
Because I had read online that high HCG levels won't necessarily
double every couple days once they are that high, I was fairly shocked
at her certainty and wording. I insisted on a final ultrasound at 7.5
weeks when I was coming in to get the pills. Bear in mind, I can't
emphasize enough, the doctor only wanted me to come in to get the
pills to start the miscarriage. She was not going to follow up on her
own. We did the ultrasound I asked for, and what do you know - a
perfectly healthy embryo, with healthy heartbeat at exactly my
estimate of 7.5 weeks. When I asked about the HCG levels confirming
miscarriage she conceded that the numbers will plateau when they get
this high. Again, I am confounded as to why she worded her diagnosis
so certainly if she knew this was also true.
First we were so grateful and felt little else, but at the next
regular appt. the doctor had the nerve to tell us not to Google
things. There is a lot of bad info out there, she said, and she'd
prefer we get our information from her. I completely understand what
she is saying. Of course if you Google "headache" you can find 100
sources saying you have a brain tumor. That said, separate out the
good from the bad as much as possible. Take notes about questions you
have and follow up with your doctor. We are lucky that she listened to
my requests. Had she not, we have gotten a second opinion - even
though I honestly believe her and was prepared for a miscarriage. I
don't distrust the medical community because of this but they are
human, and a good doctor should encourage you to advocate for
yourself. Even if s/he doesn't, you should still advocate for
yourself! All this happy ending said, I do just caution against false
hope. Without knowing the statistics, I would venture to guess that a
misdiagnosis is less common that a valid one. But if you were seen
particularly early (before 8 weeks), if your HCG levels are rising at
all, if you have a retroverted uterus, my personal recommendation is
do one final ultrasound once you are close to 8 weeks+ and/or get a
second opinion before proceeding with the medically induced
miscarriage. Even if you are in the heartbreaking state of not having
a misdiagnosis, at least you can feel sure and certain, which brings a
lot of comfort. Also take heart! Blighted ovums are common and it's a
great sign - says me! - that your body is ready to nurture a baby and
that you can conceive. And when you do get a viable pregnancy, you
will be a great advocate for you and your baby. Good luck to you all!
To read my own Misdiagnosed Miscarriage stories:
my blighted ovum scare
Told I was miscarrying at 12 weeks

Blogging on Misdiagnosed Miscarriages
If you are being diagnosed with a blighted ovum after IVF, please take a look at this article I put together: Misdiagnosed Miscarriage After IVF
and why I just believe a blighted ovum should NOT be diagnosed before nine weeks at the earliest and the UK's new guidelines support this

This post is for informational purposes only. This information is not intended to replace information given by your physician but rather intended to supplement that information.
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Re: JB's Story -High hCG Levels and No Baby Seen

Postby mccartmrs » Wed Feb 15, 2017 4:12 pm

Your story has given me hope.
According to my LMP, at 6w4d, I had to go to the ER due to a nasty fall. I wasn't supposed to have a doctors appointment until this week (two weeks after the fact). They did an ultrasound and took blood, just to be safe. The report came back saying my HCG was at 46,100 (above high average, according to their notes) but they didn't see anything in my gestational sac (measuring the exact same, according to them, as how far along I thought was) and to follow up with my OB in a week. They said it was possibly a blighted ovum, but it's possible it was just too early to see. That was a Tuesday. That Thursday, my OB called me in for a blood draw (which was supposed to be done quickly, over my lunch, but took over an hour for me to be seen for a two minute procedure!) and those levels came back at 75,734. My fiance and I went in last Tuesday, at which point they drew more blood, and do an ultrasound in the office. This was probably the fastest ultrasound ever done, as the OB didn't take but 2-3 minutes before saying my gestational sac had grown (did not say by how much) but he didn't see anything. At 7w4d we were told it was a miscarriage/blighted ovum. We were given three options - wait and let it happen naturally (While monitoring it), take a pill, or have the D & C. We were devastated. I felt it was so early to be talking about these options, on top of the fact that I still felt sick, sore breasts, bloated, all the pregnancy symptoms I'd been having. I started doing research and came across this site. So when, two days later, my HCG came back at over 91,000, I decided to wait. I am now at 8w5d, and going in for another ultrasound today. My prayer and hope is that because I have been told I have a tilted uterus, and because my cycles are not regular, that I ovulated late, and the tilt maybe made the baby harder to see (especially when they are that small!). Twins also run in my family on my mother's side, so maybe the possibility that there are two, and they are growing a little slower? We will see. I have had no spotting or cramping at all, which, along with this site, is keeping me hopeful. I hope my story turns out like yours, thank you for sharing!
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