I may have phantom hcg syndrome

Twizzle · September 2011

I had an ultrasound and another blood beta hcg test today to try to figure out why my hcg levels are going up. Overall it was fairly good news. The ultrasound looked completely normal. Ovaries looked good, had several follicles (he didn't measure any). My uterus and lining looked very good. The lining was good thickness and there was no evidence of retained tissue. The blood flow to the lining was normal, which also is a good sign that there isn't any abnormal tissue in there.

The results of the blood test were basically the same--the level was 26 today vs 27 two days ago. Apparently they ran the blood test several times with different dilutions to see if there was some lab discrepancy or fluctuation and the result was always the same.

So, it's not a new pregnancy (sad, but given that I'm on CD 16 or so I didn't really think I was pregnant), the doctor did mention the possibility of a mole, but he thought it was very unlikely given the u/s results. He thinks that I may have something called phantom hcg syndrome, which means there may be something in my blood that is reacting with the assay used to do the beta hcg blood test. This gives a low level false positive. However, the urine hcg should be negative with phantom hcg syndrome. So, next week I am going to repeat the blood test and also do a specialized urine test, something that's more complex than just a basic home pregnancy test.

Incidentally I did POAS just now and it looks negative. There might be a very very very faint line but I think it's really an evaporation line. I'll try it again in the morning so it won't be as diluted.

I did some lit searches of phantom hcg and read some cases of women who had it and ended up getting chemotherapy and in one case even a hysterectomy because it was thought that they had had molar pregnancies that led to gestational trophoblastic disease! I'm really glad that my doctor knew to check for the phantom hcg first!

So hopefully I will have some final answers next week. Although if I do have phantom hcg I'm not sure what this will mean for starting to TTC again since the plan was to wait until the hcg dropped to zero. I'm still holding out hope that I'll just be able to get pregnant naturally soon!

hoping4more · September 2011

I'm glad you finally have an answer. I am interested to hear more as it progresses!

SB524 · September 2011

Wow, that is so interesting. {Even though it's still not what you wanted to hear}. It's great to have an 'answer' though and it sounds like your RE is being very proactive. I would feel much better with tentative diagnosis than nothing at all! Here's hoping it zeros out soon so you can TTC naturally. How about a BFP for Thanksgiving/Christmas?!

JMay · September 2011

OMG! Wow, I'm so happy you have an answer. Thank goodness you have a doctor who knew what to look for! Fingers crossed for you that everything goes well and you get a sticky bfp soon!

kipprob · September 2011

I'm glad they are close to figuring it out!! I'm sorry you have to go through this - what a pain when all you want to do is get back to the business of TTC! Good luck!!

choirgirl · September 2011

How bizarre! I'm so glad you may be getting an answer in a pretty non-invasive way.

So, I may fail reading comprehension, but if it's phantom hCG, do you need to wait any longer or can you start again, next month, knowing they will have to test you differently?

Twizzle · September 2011

choirgirl:
How bizarre! I'm so glad you may be getting an answer in a pretty non-invasive way.
So, I may fail reading comprehension, but if it's phantom hCG, do you need to wait any longer or can you start again, next month, knowing they will have to test you differently?

That's a question I wish I had asked the doctor last night when he called. I'm hoping it doesn't interfere with TTC again. We weren't planning to do any treatment for a couple of cycles anyway, but I'm worried that this is going to change everything. I'm also starting to get irrationally worried that I won't be able to TTC at all because they will need to keep monitoring the levels. I'm kind of a mess today.

lillinzlou · September 2011

Twizzle:
choirgirl:
How bizarre! I'm so glad you may be getting an answer in a pretty non-invasive way.
So, I may fail reading comprehension, but if it's phantom hCG, do you need to wait any longer or can you start again, next month, knowing they will have to test you differently?
That's a question I wish I had asked the doctor last night when he called. I'm hoping it doesn't interfere with TTC again. We weren't planning to do any treatment for a couple of cycles anyway, but I'm worried that this is going to change everything. I'm also starting to get irrationally worried that I won't be able to TTC at all because they will need to keep monitoring the levels. I'm kind of a mess today.

I am so sorry you are feeling bad about this! I have no idea what this is and have never heard of it. However, I really hope you find some answers soon and it won't interfere too much with TTC again. I will be pulling for you and I'm honestly really curious to see how this turns out! It sounds like you are in good hands and your Doc is going to take care of you.

bronxite · October 2011

Ugh - what craziness. So sorry you are going through this. Wish I could press "fast forward" for you so you could be on the other side with answers and a plan to resume ttc.

KelliLynee · October 2011

I am so glad that you got something of an answer! (And so glad it wasn't retained tissue or molar pregnancy!). Take care of yourself.

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