If You Have Been DEFINITELY MISDIAGNOSED...

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

If You Have Been DEFINITELY MISDIAGNOSED...

Postby Kay » Fri Feb 01, 2013 9:11 pm

If you have definitely been misdiagnosed, please, post your story in here. As time allows, I will move it into the forum.

The forum fills up too quickly with non-misdiagnosed stories and women just looking for help. We've had to lock it so that women can easily find the actual misdiagnosed stories.

If you have ABSOLUTELY been misdiagnosed and want to share your story, please, post here. You will help so many women.

If you have not been misdiagnosed...yet, please, take a look at one of our other forums and leave your post there. Posts in here may not be answered.

Possible Miscarriage ~ All Other Issues
-------------------------------
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: If You Have Been DEFINITELY 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):

STATS:
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: If You Have Been DEFINITELY MISDIAGNOSED...

Postby SpiridC » Fri Sep 01, 2017 12:26 pm

I miscarried 4 months ago, and found myself coming to this site a lot for information and hope. I am now hoping to offer the same for other ladies who might find themselves in my current position.

Sadly back in April my story didn’t have a good ending – I found out at 8w that the embryo stopped developing at 6w. On 7/28, the day my period was due, I tested positive for pregnancy again. There was some concern though because I had been spotting for a solid 1.5 weeks prior to the positive PT. Typically implantation bleeding doesn’t last that long, so my doctors had some concern about a possible ectopic. They started monitoring my hcg on 7/31 (I was about 4w 3d at this point) and it came back 123. I got another draw 48 hrs later to find out it had gone down to 106. I was told it was not viable but they were unable to rule out ectopic. I got another draw another 48 hrs later to find out it went up to 136. This was a Friday afternoon and bc of the rising and falling levels, they were very concerned about ectopic at this point and made me go to the ER to get an U/S that night. The U/S could not pick up a pregnancy. My hcg since that morning had gone down to 116. One ER doc told me it was probably ectopic. Another said it probably wasn’t and was just too small to locate on an U/S (5w at this point). I asked for the Methotrexate shot bc they had gotten me very nervous about ectopic and I just wanted to eliminate the threat. Thankfully they refused to administer it and said they were just going to monitor my bloodwork for now. So 48 hrs later I got another draw and this time it had somewhat doubled to 230. I got another draw 48 hrs later to find out it doubled to 400ish. I started to get some arm pain (probably from the constant drawing of blood) so they rushed me for another U/S at almost 6w, to confirm it wasn’t ectopic. Thankfully they were able to find it in my uterus at this point, measuring 5w 4d, so ectopic was ruled out. My hcg levels had also doubled again to 800ish. Yet again they told me it was not viable and I should prepare to mc, and to come back in another week for a blood draw and U/S to confirm this. Fast forward 1 week (7w at this point), and my hcg had continued to double consistently to 5500. The U/S showed a hb of 140 and was measuring at 6w 2d! My doctor was in shock and honestly didn’t have much to say except I was still pregnant and I might have made a liar out of her. She scheduled another U/S approx. 2 weeks later, for my 8w appointment, and sure enough everything looks great! She said the hb seemed to be in the 150-160 range and I was measuring only a day behind, at 8w 2d. We are both (cautiously) optimistic at this point and she said if I just came in for my 8 wk appointment fresh off the street, she’d have no reason to think anything was wrong.

I just wanted to share this story bc I have seen stories about slowly rising or wonky hcg levels and doctor’s being quick to label it an ectopic and administer the Methotrexate shot before confirming on U/S. Thankfully my doctors were very conservative, for which I am most grateful. I also wanted to give possible hope to those ladies who might be having their hcg testing done early and not receiving the results they were hoping for; I can't tell you how many doctors and nurses told me I would mc and there was no hope. While I am still cautious, I am now hopeful and this all goes to show that outliers do exist!
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