USCKitty's Story - High hCG Numbers, No Baby Seen - MISDIAGNOSED

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USCKitty's Story - High hCG Numbers, No Baby Seen - MISDIAGNOSED

Postby usckitty » Mon Aug 21, 2017 5:46 pm

I wanted to write down my story because just a couple days ago, I was searching high and low for stories similar to mine in hopes of finding a similar case with a happy result. I didn't find anything exact, but was glad to see some stories that provided some glimmer of light. I'm sharing my story to help those who are looking for: HIGH HCG, non doubling HCG, 6 weeks 2 day for first ultrasound with empty gestational sac. I'm going to be as specific as possible because I'm a pretty "by the numbers" kind of person. I apologize in advance for the long read, but I love reading detailed stories when I'm researching and hopefully it helps someone!

USCKitty's Story (high HCG, non-doubling HCG, 6w2d US with empty gestational sac):

LMP: 06/24/2017
Date of Ovulation: 07/11/2017
First very very faint BFP on: DPO 11 (07/22/17)
First HCG numbers taken on 08/10/17 (DPO 30): 81,089
2nd HCG number taken on 08/12/17 (48hrs) (DPO 32): 90,913
3rd HCG number taken on 08/19/17 (9 days after 1st hcg) (DPO 39): 259,487

I went to my first ultrasound appointment at 6w2d because I had a correctly diagnosed blighted ovum in February 2017. I wasn't able to get an appointment during that pregnancy until late in the game at 9w6d and we monitored for another week or so after that on sac growth, HCG levels, etc. The sac had grown past 25mm at that point with nothing seen. We had 3 follow-up ultrasounds following and opted to do a D&C since it got close to the end of first trimester without any signs of my body miscarrying naturally.

For this pregnancy, my LMP was 06/24/17 and ovulation occurred on CD 18. I'm an avid charter, with temping and LH strips so I was pretty certain regarding my ovulation date of 07/11/17. At the appointment at 6w2d (08/10/17), the OBGYN performed an transvaginal ultrasound. After doing some searching, she showed a black large sac and said that was my gestational sac. She zoomed in and said: "it's measuring at 7w2d, and there is no fetal pole, yolk sac, or heartbeat". She estimated the size to be at about 21mm. I was heartbroken as I had just had a blighted ovum a couple months back (with a miscarriage a year before that). She said that perhaps I had my dates wrong, but it was a little disconcerting that the sac was so large without any flicker of life inside. She issued for me to do my 1st HCG test and then another HCG test 48 hrs afterwards. She also scheduled an appointment for me the following week 08/17/17 to do a follow up ultrasound.

My HCG test the day of my ultrasound which showed an empty gestational sac was at 81,089. The 48hr rise of HCG tested at: 90,913. I was very torn on these numbers because typically at high numbers such as these, a yolk sac and heartbeat "should" be seen. Also, I know that it takes longer than 2 days to double with high numbers, but I was hoping for the HCG to increase at a little faster rate. Also, at 6w2d, the 81k number is off the charts and more within the range of what she was saying my sac was measuring at.

On Monday 08/14, the doctor called and wanted to go over my results. She said the numbers aren't good and she also reviewed my scans with a colleague. She wanted to inform me that her diagnosis that this is a blighted ovum and that this is not considered a normal successful pregnancy. She also suggested misoprotosol to help get the miscarriage started. She said, we could discuss further during the final ultrasound on 08/17, but to prepare myself mentally that I would be miscarrying soon.

I decided to cancel my appointment scheduled with her on 08/17 and made an appointment with another OBGYN (same hospital, different doctor) for Saturday 08/19. On my appointment on 08/19 I was feeling a little defeated. I had spend the past 10 days going over all my symptoms, googling every little twinge to see if it's miscarriage cramps, and scouring to find any super high HCG number/scans that turned out okay. It wasn't very promising and I trudged to the appointment expecting a negative result.

At my appointment on Saturday 08/19. I gave the OBGYN the rundown (how we didn't see anything last time, the high numbers, etc). She said "let's dive right in and see what we can see and then go from there". She proceeded with an transvaginal ultrasound. Almost immediately as she went in, she said "I see a heartbeat!" I was stunned, I looked over to the screen expecting the black blob of emptiness, but was surprised to see that she was right. There was our baby clearly visible with a heartbeat at 144BPM. She measured it and said it was measuring perfectly at 7w4d (EXACTLY matching my ovulation date).
I ran my HCG numbers that same day and got 259,487.

I'm definitely not out of the woods yet, but happy that there is an actual baby there. Glad that we waited 10 days post the first ultrasound. Hope this story gives at least one person some hope. You CAN have super high HCG number and be at 6w2d without seeing anything other than an empty gestational sac come out positively. Good luck! If anyone has questions regarding my story, I would be glad to assist and update :)
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Re: USCKitty's Story - High hCG Numbers, No Baby Seen - MISDIAGNOSED

Postby Kay » Tue Nov 07, 2017 4:02 pm

My apologies, I thought I added this post to our forum but somehow it didn't go through.

I am so happy for you and thank you for sharing your story. We've had other women here whose levels have been up in the 100,000 range before seeing their babies. You'll give many women hope. I hope you give an update when you can! Congratulations!
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: USCKitty's Story - High hCG Numbers, No Baby Seen - MISDIAGNOSED

Postby iza.thinks » Sat Nov 11, 2017 8:57 am

I'm so happy to hear you went for a second opinion.

I did the exact same thing, but my journey from there takes a different turn. I still don't have closure of what's going on. At 8 weeks 3 days, I had an u/s and they couldn't find anything and my beta was 116,000. The next day my OBGYN told me I may have a partial molar and I'll require a D&C this week. When I pressed her, "are you positive?" she said she can't be positive until we go through the procedure and get it tested. I asked for a second ultrasound before the D&C. She agreed. Her office called to set up the D&C, but never set up the second ultrasound. At that point, I started looking around for another OBGYN for a second opinion. Second u/s was a week later. Again, they couldn't find anything and there were a lot of blood flooding there in all directions. She said the same thing. It looks like I have a molar and non-viable pregnancy. My HCG dropped to 86k. I suggested a natural miscarriage, but she said they'll need the tissue to rule out molar and also to make sure everything is clear for the future pregnancy. After crying it out, I decided to go with the procedure. 10 days passed, I called the office for the pathology report. My nurse told me it's not a full molar and that when I come in for my beta test my OBGYN will talk with me in detail. Well she didn't. The nurse attempt to explain the report to me, but I had a lot of questions because no where in the report did it indicated anything was wrong with me.

A stain for p57 is performed and shows diffuse staining int he villous and extravillous trophoblasts. This finding mitigates against the possibility of a complete mole. There is no indication of partial mole either, or any form of abnormality.

Products of conception including chorionic villi which I think means there is a fetus. I asked my doctor to clarify, but she assures me there is no fetus.

She keeps assuring me the good news is I'm recovering quickly and we could plan my next pregnancy sooner. I told her, I want to know what exactly happened to me! I need to speak with the Pathologist, but based on the conversation I doubt I'll get the answer for closure. They will never willingly admit to misdiagnosed me. My only choice is to send the pathology report to others to interpret. The pathology is one page long, I don't even think this is a full report.
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