Confused - '7' weeks,13,600+, no fp/hb/ys - MISDIAGNOSED!

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

Confused - '7' weeks,13,600+, no fp/hb/ys - MISDIAGNOSED!

Postby TheOtherKay » Wed Mar 17, 2010 2:01 pm

Hi, my name is Kay (as suggested by my screenname I am not the Kay who runs this site, just another one).

Here's a bit of a background on why I am here.


- Positive HPT on March 8th, CD42. No positives prior to that, despite a lot of testing.
- March 9th, strong cramps, primarily on the right, started. Got quite bad.
- ER visit #1 at around 12:30am on the 10th. Beta 664.
- Came back 18 hrs later for an ultrasound. Very small sac spotted + sizeable cyst on right ovary (likely corpus luteum.) Beta at this time 996 - so definitely right on track.
- Started bleeding March 15th. Bright red, copious amounts, no clots. Went back to ER as instructed. Beta 13,600+
- U/S on March 16th showed one definite sac (measuring ~5w2d, completely empty) another possible sac (smaller, also empty, 'behind' the first one, they didn't measure it but it was visibly smaller) and several small sonolucent cysts (weren't on last U/S, nor on the U/S I had in december for my PCOS) in my uterus.
- March 16th - diagnosed miscarriage due to high beta and no visible fetal pole, yolk sac, or heartbeat. Doctor wants to monitor beta and have another U/S on the 26th to rule out molar pregnancy (or 'blighted ovum.')

My concerns...

- I was on clomid. This can lead to late ovulation. I didn't get a positive HPT until CD42 (though I didn't test for 5 days prior to that.) I had stopped temping at CD30, considering the cycle a failure. I honestly don't know when I ovulated, so the possibility of me being only 5w2d (instead of 7w1d which I would be now) is fairly high.
- The sac *did* grow. In the 6 days between my first ultrasound and second, it grew enough for me to notice. Looked like a 4w sac the first time I saw it, and looked closer to a 5w sac the second time I saw it. That would be consistent with the sizing (they didn't give me measurements, and I am referencing sizing relative to the endometrium)
- Not seeing a fetal pole or yolk sac at 5 weeks is pretty common.
- I have uterine scarring, which certainly could 'hide' a baby
- The 2 sacs bugs me. I was on clomid - twin rate of ~10%. If this were a multiple pregnancy, 13k+ in week 5 would not be abnormal, even if the baby(ies) were not yet visible.

So, I have another ultrasound next Friday (the 26th.)

I am not holding out much hope because of my history of miscarriage. I have read the stories here, but I am wondering if anyone has statistics. Actual stats of how common it is to not see the fetal pole or heartbeat after a beta of 10,000+. I was told it is very rare, and I have read that myself in medical publications, but I have never seen actual hard statistics of how 'rare' it is. This site certainly seems to suggest it is less rare than we think!

Anyone have stats? Does it sound like my pregnancy has a good chance of progressing, or should I give it up as a bad job at this point?
Last edited by TheOtherKay on Mon Mar 29, 2010 2:20 pm, edited 2 times in total.
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Postby Kay » Thu Mar 18, 2010 9:40 am

Okay, you made me laugh with your screenname :)

That said, I am so sorry you are going through this scare.

Believe me, it is really, really (and I stress REALLY) common for women to have numbers in the tens of thousands and even higher before seeing their babies. A blighted ovum should NEVER be diagnosed before ten weeks or so because levels can be really high before seeing the baby.

Unfortunately, until somebody does a study showing this, doctors will use that outdated information and keep misdiagnosing.

I do hope you get better news soon.
-------------------------------
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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Postby TheOtherKay » Thu Mar 18, 2010 7:58 pm

He didn't specifically diagnose me with a blighted ovum - just said it is a possibility, as is molar pregnancy due to the very rapid jump in my beta (though it was certainly lower than they'd expect with a molar.) On the 26th, at my next ultrasound, I'll be nearing 9 weeks LMP, but if the sac sizing was correct, then I'll be nearly 7 weeks by the previous sac measurements. I am wondering whether to request another ultrasound at that point if nothing determinate is found.

Fortunately, my doctor (perhaps one of the kindest doctors I have ever met) is not in favour of moving towards any sort of termination unless there is absolute certainty of the pregnancy being molar, so that's good.

As it is, I still feel quite pregnant. Had morning sickness today, I still have that 'full' feeling in my uterine area, my breasts are still sore, my cats are all over me, and my (weaned for 7 months) son wants to nurse again.

I am trying not to get my hopes up, but I'm a facts and figures type person which is why I was hoping there were stats. But, alas, as I know from being a member of the infertility community, a lot of the best information hasn't made its way into the medical journals yet!

So I'm going to keep hoping for now, and will see what the ultrasound shows me.

Thank you for this site, by the way. It truly does help.
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Postby Kay » Thu Mar 18, 2010 9:25 pm

Believe me, I understand. I am very much a facts and figures sort as well.

I am glad your doctor is not pushing you toward ending the pregnancy. Of course, if a molar pregnancy is a possibility, you should stay closely monitored. Hopefully, though, you just have a good ultrasound next time.

(((hugs)))
-------------------------------
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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Postby TheOtherKay » Sun Mar 21, 2010 11:43 am

Hm, I got some positive news today. My beta is still going up normally. I know that can happen with a blighted ovum, but still, it's good to know that I haven't started the miscarriage process, and that this isn't molar.

My ultrasound is actually going to be the 29th, so I am going to go slightly mad over the next week. I will update here on the results. I am hoping that I'll be another one of the misdiagnosed cases - we'll see.
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Postby Kay » Sun Mar 21, 2010 8:49 pm

Hope certainly is not a bad thing :) and I do hope you get the best of news at that appointment!
-------------------------------
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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Postby TheOtherKay » Thu Mar 25, 2010 1:43 pm

Just got beta results back from draw on Tuesday (sucks that it takes so long to get results from a doctors' office! The hospital lab takes an hour, hah.)

Was 53,700 on Tuesday. So, an increase of 8,700 over Sunday. Still going up, which is good, but still fairly slowly. Might be a slowdown prior to a miscarriage, or could just be that because I'd be approaching 9wLMP/7w by sac measurements, that the increase is slowing down normally.

Trying to keep this thread updated so that depending on the results (M/C or viable) that others have this as a reference, the same way I've been using this site as a reference.

Edit: IT's also worth noting that in my pregnancy with DS, they could see him at 6w5d, but just barely. It took two scans by different techs in the ER to spot him (I'd gone because I passed out and wasn't able to walk for the pain when I came around.) At the time, my uterus was in normal position.

AFTER having DS, my uterus is tilted. Pregnancy actually gave me a retroverted uterus. Go figure.

I still feel pregnant (today is 3/27) and my symptoms are still progressing. I am fairly sure the scan on Monday is going to show a baby. Mother's intuition, perhaps, but I feel good about this pregnancy. I've never progressed this far except with my pregnancy with my son.
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Postby Kay » Sat Mar 27, 2010 8:56 pm

That rise in hCG levels is normal for many women. I'll be watching for that update. You are in my prayers!
-------------------------------
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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Postby aisha » Sun Mar 28, 2010 4:49 am

Hi TheOtherKay,

From my experience, HCG level is not that reliable anymore once the sac is seen. They took my beta level and from the results, I was increased only by 30%, which is not good from the doc's point of view. After a week, had another scan and there my FP with E> . So, dont worry yet. Keep us updated.

Added you to my prayers :H
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Postby TheOtherKay » Sun Mar 28, 2010 1:21 pm

I have another theory I want to post here, just in case I'm right, I want to say that I called it.

I think I ovulated a lot later than I thought, probably around the middle or end of Feb (22ed or so). I think that I got the positive HPT at 4w pregnant, not 6 weeks as I (and the docs) initially counted. Late O is really common with clomid.
So, if I was ~4w on March 8th then...
- The first ultrasound that showed a sac of around 4w was right on target
- The first beta (664) which would've been at 4w +/- 2 days would have actually been really high for a singleton
- The second beta of 996 only 18 hours later even more ridiculously high, with an extrapolated doubling time of 36hrs likely indicating a potential multiple pregnancy
- The 3rd beta (~5w1d) of 13,660 even more ridiculously high for a singleton, but average for twins.
- 2ed ultrasound (1 week 1d after the first) showing one sac of 5w2d would be perfectly accurate, and totally normal to not see anything. Another sac was visualized (I was not imagining that - I know ultrasounds really well) but was also empty.
- Beta on the 21st of March (6w going by sac size) of 45,000 is REALLY super high for singleton, average for multiples.
- Beta at 6w2d of 56,700 is beyond the expected normal range for singletons, quite average for multiples.

So, I think Dr B (who diagnosed early pregnancy failure) was wrong. I think that the reason they didn't see anything with my beta so high was not because of a blighted ovum, I think he was assuming I was farther along than I am. It sounds to me, from reviewing all of this, that it was actually a really early *twin* pregnancy.

I was on a med that has a 10% risk of twins. It's certainly not outside of the realm of consideration.

I am fairly confident (I'd give it a half and half chance) that tomorrow, I will see two heartbeats on that ultrasound. I'm 95% certain that this pregnancy is viable. I just *feel* it.

Will post what I find out. I'm just going mad and keep going over and over all this information in my head repeatedly.
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Postby aisha » Mon Mar 29, 2010 1:00 am

Well, after reading your post, let me share with you my beta experience. When I was 6w3d (measurement according to gest sac), my HCG level was 66,965 (which i believe is kinda high) and after 2 days, my level rose to 87,000. Isnt that pretty high. I had another scan 8 days after my last b/w. I saw a single gest sac with one little bean in there :) . Keep us posted.

I will pray for you that you are going to come back with positive news :H
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Postby TheOtherKay » Mon Mar 29, 2010 1:58 pm

HAH! I was right!

It was a twin pregnancy, but we lost one twin. That explains the pain and bleeding. The other sac was definitely another baby.

So, I am sad at that one, but BEYOND overjoyed that the other one was *absolutely* fine. Little heart beating at 139bpm. I'm 7w3d and due November 12th!

Thank you so much for this site, it saved me over the past couple of weeks and gave me hope.
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Postby Kay » Mon Mar 29, 2010 6:55 pm

Okay, tears in my eyes. I am so happy for you. So many pregnancies start as twins and end as singletons. Yes, it is sad but up until fairly recently, women had no idea they actually lost a baby.

I am really so happy for you. So, how did the doctor react?
-------------------------------
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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Postby TheOtherKay » Mon Mar 29, 2010 7:07 pm

Kay wrote:Okay, tears in my eyes. I am so happy for you. So many pregnancies start as twins and end as singletons. Yes, it is sad but up until fairly recently, women had no idea they actually lost a baby.

I am really so happy for you. So, how did the doctor react?


Thanks. I know vanishing twins are pretty common, and the thought had occurred to me prior to today, so I'm really not all that shocked, actually. I did have a 10% risk of conceiving twins due to the clomid.

Don't know how the doctor reacted, actually. I've not seen him since he is an ER doctor and, although he was there today, they didn't need me to wait around for a report.

It is actually almost amusing that when the sonographer for today pulled up my last ultrasound, she agreed with me that there was clearly another sac even on the last ultrasound. The last sonographer wouldn't discuss it at all, and it wasn't on my chart, but the one I had today said it was definitely another sac on the last ultrasound, and it was even more clear today. The last sonographer I had didn't seem to be able to interpret the images very well, so it was certainly an exercise in human fallibility.
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Postby Kay » Mon Mar 29, 2010 7:09 pm

Oh, I tell you, human error in reading these ultrasounds certainly plays a role.

I am just so happy for you. I think I already said that :) I think I have a pretty good idea, though, of how you felt when you saw that heartbeat. That is a feeling I will never forget! 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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Postby TheOtherKay » Mon Mar 29, 2010 8:33 pm

We're coasting on a happy wave right now, haha. My husband had taken half of my shift at work (we work together) so that I could go to the ultrasound.

I went to work to tell him and he was on a call at the time, so I went and told our boss what was up. She was beyond thrilled (she'd given me two days off following the misdiagnosis, given that I was very upset.) and told me to go pull him off the floor when he was done his call.

I tell you, the man was completely shocked. He is such a wonderful father and is one of those rare men who really adores babies. I don't think I've seen him smile so widely since DS was born.

Truly, I could jump for joy. I almost hugged the sonographer, and when I told her that she said "Well, I was worried you'd burst into tears if I hugged you."

She was so kind and so wonderful. Today has been a very good day.
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Postby aisha » Tue Mar 30, 2010 1:21 am

Hello TheOtherKay,

Im happy to read your good news. Congrats!! Wish you healthy PG and baby.
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Postby Kay » Wed Mar 31, 2010 3:34 pm

Kay, I can SO relate. My husband was absolutely stunned as was everybody in the room :) I think I did hug the tech, the nurse and probably anybody else who got in my way that day :)
-------------------------------
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.
User avatar
Kay
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Re: Confused - '7' weeks,13,600+, no fp/hb/ys - MISDIAGNOSED

Postby Kay » Thu Jun 10, 2010 4:25 pm

Kay, how is the pregnancy going?
-------------------------------
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.
User avatar
Kay
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Re: Confused - '7' weeks,13,600+, no fp/hb/ys - MISDIAGNOSED

Postby TheOtherKay » Thu Aug 05, 2010 11:39 am

Sorry, haven't checked back here in a while - it's been a crazy time for us.

I am happy to report that I am almost 26 weeks and we are having a healthy little girl. By my 20w ultrasound, the second sac was long gone. There's nothing to indicate that this pregnancy began as twins anymore.

Through much of the first trimester, I did experience occasional 'lumpy' spotting which I think was probably the remainder of the products of conception of the lost twin.

There's been some concern about preterm contractions so I am off work, but that issue is unlikely to be related to the rough beginnings of this pregnancy.

Now that I am aware of misdiagnosed miscarriages, having experienced it, I have directed a LOT of people here. It is amazing hwo fast doctors jump to diagnosing a miscarriage - I see it every day now on the fertility sites I'm a member of, so I keep sending people here to read the stories.
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