Sunday, December 02, 2007

Low, non-doubling betas suck

In my pre-infertile life, I used to think that once you had a positive pregnancy test, it meant you were pregnant. In the 17+ years since that time, I've learned that that's not always the case. Well, you are technically pregnant, but it doesn't necessarily mean you have any chance of getting a baby out of the whole deal.

I'm not talking about the cases in which you have good betas (say 150 on 14 dpo - days past ovulation), but rather the time when you get an iffy 24, when it should be well over 50. So - should you be happy? Is it time to announce it? Not really. The first thing that happens is that you're asked to repeat it 2 days later. And then what happens when you get a 32? It's going up, but it's not doubling. Another repeat... 2 days later. 59. Almost doubled, right? And it can go on and on. Sometimes it's just a 'chemical pregnancy' and sometimes it isn't, but the low, non-doubling beta is rarely a sign of a healthy pregnancy.

Back in November 2001, I had a pregnancy like this. 14dpt - days post transfer - I had 29. 2 days later, it was 34. Then it continued to almost double, to double, etc. And eventually, an embryo appeared on the ultrasound screen - exactly the size it should be, with a beating heart. It kept growing and slowly I started to think that I might end up with a baby after all. (Strangely, I never really looked at the other hormone tests I did, all of which had values that were not normal for pregnancy.) The pregnancy was a mess. I had a big hematoma (blood clot) in my uterus and had periodic bleeding, but the fetus continued to grow. Around 11 weeks, I had the nuchal translucency test & it was fine. About a week later, I was put on complete bed rest because of heavy bleeding that continued to get worse. The doctor said it was just the hematoma finally draining itself. He was wrong. I started to cramp badly and the pregnancy ended right around 13 weeks.

The signs had been there all along - the low beta, the non-doubling beta, bad hormone tests, heavy bleeding, the hematoma (which never got smaller than the fetus)... After all the bleeding and the uncertainty, I must admit that there was a sense of relief that it was finally over.

Frequently when I read other people's miscarriage stories I find myself forgetting that it ever even happened to me. The times when I do remember are actually when I read about the low, non-doubling betas. And then I feel like I don't know what to say. Should I tell the truth? Should I keep my fingers in mittens? Sometimes I want to say - just pray that if it's going to end, that it end quickly - that you don't have to go through 11 weeks of uncertainty & losing blood only to also lose the baby in the end...

Looking at the queries I get for FertilityStories, a lot of women are wondering what happens when the beta is low or doesn't double...

How low was the lowest beta with which you successfully went on to carry a baby? How many days past ovulation / transfer were you? If you ever had a low or non-doubling beta - what would you have wanted to be told?


Anonymous said...

There was a woman on a message board who had two, healthy, full-term pregnancies both starting with a beta of 18 at 16dpo, although I'm not sure about the doubling.

I think the truth is as you say. It can happen, but it usually doesn't. When I had low betas, I wanted that truth. The prognosis is poor, but it's not over yet. I'm sorry, and it's difficult, but we're just going to have to wait and see.

And then I wanted the opportunity to follow up as often as I needed, with the minimum requirement for followup being whatever was "safe". (eg, I'd consider it safe to get in and do an ultrasound fairly early, to see if the embryo is in the right place or not, since ectopics can start like this. I don't think the patient should be allowed to forgo this early ultrasound without the strongest of warnings. But the frequency of followup betas can be safely left to individual choice - anything from daily to just await the early ultrasound - as ectopics don't tend to cause problems when they're still very small. All this on the standard proviso that the patient return immediately if bleeding/pain/etc.)


Dr. Grumbles said...

I too want to know. I want honesty and bluntness. That's how I prefer it.

Joy said...

I've had 2 this way.. Both ended in miscarriage around 7w.
The first, we saw a heartbeat at 7w, it was gone at 8. I never had a spot of blood at all, had a D&C at 9w.

The 2nd, we had a hb at 6w, spotting started a few days later. Still had a hb at 7w, then the bleeding got worse. It was gone by 8. I tried & tried to miscarry naturally.. then with drugs.. Nothing worked. Another D&C- around 11w.

I wanted to know the truth. The outcome was awful. Limbo is just torture. I could endure torture if it had a purpose.. but torture for the inevitable disappointment.. That's the worst.

Unfortunately, (?!) sometimes things do work out.. so there are no answers. if they could take a beta & say "it's too low, we'll stop now." it would end it quickly.. but even if that were possible, I don't think I could have opted about that. I'd always wonder "what if..."

But.. really, I want to know the truth. When people ask me about how bad it is.. I say "It's the time to pray for a miracle."