Please help - been recalled following screening - high HcG

[Rarfy]

Hello ladies, desperate for some help and more importantly positive stories! I've searched high and low and can't find many similar stories.

This is my 4th pregnancy after a complex history as follows:

Pg1 = mmc discovered at 9 weeks finally removed at 14 weeks baby / fetus whatever you would like to call it stopped developing at 5 weeks. No testing done.

Pg2 = stillbirth at 27wks. Son had PFFD discovered at anomaly scan. PFFD compatible with life not linked with death. Post mortem returned no cause of death.

Pg3 = mmc at 14+2. Hb stopped around 14wks. Tests revealed baby had triploidy.

Had bleeds in all the above.

Pg4 = now, currently 13+4 had screening done on Thursday. Reveived phonecall yesterday to tell me that my results for Edwards and Pataus are 1:50,000. However they are unable to screen for Downs due to a high HcG reading.

I asked for my results which were as follows:
NT = 1.6mm
PAPP A = 1.9
HcG = 5.58.

The midwife wants me back in to look at the placenta as high HcG can indicate a problem.

I sat and thought about it cried then called back. The MW said that is there was a problem with the placenta it would usually have been picked up on the scan. I was scanned 3 times on thursday by 2 different people due to baby being in awkward position for NT so i'd like to think she is right.

She also said that sometimes they bring people back in and it is nothing.

If there is a problem with the placenta there is nothing they can do.

The screening for downs cant be done so we need to look at other options if we definitely want that and i don't know what the f to do.

Any advice anyone? Especially from anyone who has been there?

I rang Arc who basically said they cant help because i havent had results and they have never heard of someone not being given a restult due to high HcG. In all fairness the internet seems to back this up.

Thanks if you have reached the end of this essay!

Just to add if it helps i thought i bled in this pregnancy around the time periods were due but im unsure as it was more a coloured dishcharge and yellowy / brown than blood coloured.

I am petrified of amnio due to my stillborn son. I had one with him and he died not that long after with no cause of death.

I definitely dont want CVS. Can't afford harmony as in process of buying first home and the earliest i can find one around here anyway is 13th August.

So i feel like i'm completely stuck. I guess amnio would be the way but I am so scared after my son i said i would never ever do it again. I just don't know if i could.

I dont have any advice but call your midwife and speak to them. Im thinking of you

Tbh i have only met my midwife once and didn't really gel with her. I queried about csection due to stillbirth and had we discussed it i'm sure she would consider my points valid but her response was that vaginal birth is always the best safest way to deliver. End of conversation.

The screening midwife did put my mind at rest slightly i am just shocked i have had 3 scans prior to Thursday and at the 3rd one the midwife actually commented how lovely and healthy the placenta looked.

Can't seem to find anywhere whag can cause high HcG alone. For downs it is usually linked with low PAPP A but mine is normal.

And thank you @TheRealHousewifeofCheshire for taking the time to reply. One of my fav programmes!

You can have a non invasive test privately for Downs Syndrome. I'm booked in for Monday to do it. It's £400.

Some Nhs trusts do it if your risk comes back as high. I would have thought they'd do it in this case if it's something they offer so worth asking before going private?

Oh god sorry - totally missed that you've already ruled that out!

I had abnormally high HCG levels at the screenings in both my pregnancies. I was called in during my first pregnancy after the screening, although my overall results were low risk. The consultant was annoyed I'd been called in and said it was nothing to worry about.

In my second pregnancy, I was high risk for Down syndrome. When they went through the results, it was mainly my high HCG that pushed the results into high risk, coupled with a slightly high NT measurement and my increasing age. I can't remember my HCG levels but it was definitely over 5, so similar to yours so I'm not sure why they can't screen for Downs?

Both my children were born perfectly healthy, I just obviously am someone who makes a lot of HCG in pregnancy. The possibility of problems with the placenta was never brought up.

As I understand it, the markers for Downs are usually a high NT measurement, high HCG and low Papp-A. Your NT measurement is low (for my high-risk pg, the NT measured 3mm). I'm not sure if the normal range for Papp-A, but yours don't seem that low.

I had an amnio, which gives you a definitive yes/no. You can also now get the harmony blood test, which wasn't available at the time. Are you being offered further testing?

Sorry, I took so long to type I see you already mentioned about further tests.

I had slightly high levels of beta HcG in my second pregnancy and like you, was freaked out, and like you, could find nothing online. In the end my consultant told me it could lead to a slightly smaller baby but in his words, “I’d bet the mortgage it won’t”.

DD2 was 7lb15oz, DD1 had been 8lb 12oz. So possibly she was a bit smaller in fact, but nothing to worry about.

Yes from what i know my hospital doesnt offer the harmony yet. It was mentioned yesterday by the screening midwife as a private treatment to be paid for. I wonder if the hospital does it and can pay via them though and get it done quicker? As i say the local private provider doesnt have anything until 13 august which i know isnt far but i would be knocking on 18wks before results.

I am just wondering if i can trust soft markers alone (although these haven't been looked at yet, but there were no concerns raised at scan).

This sounds really stupid but i just feel like everything is ok.

I am taking 5mg folic acid. 400mg cyclogest. 75mg aspirin and various vitamins. I wondered if any of those could have an affect but mw said no. Also have high BMI.

Thank you for responses btw they are very helpful especially these positive stories!

It does seem there is not much research into high HcG alone. I will query on Tuesday why they can't give a risk for downs. I wonder if they are worried that the high HcG will skew it and give an uneccesary high result?

This sounds very odd! Your results would seem to indicate very low risk for downs because of the small NT measurement and higher papp-a.

There is an online calculator somewhere where you can enter your measurements and bloods and it gives you odds, why don’t you try that? It’s used in many countries though results are slightly different from the nhs test

It’s www.sbpsoftware.com

Thank you @onemoremummy. It's such a nightmare. I know they don't intend to frighten you but i bet they haven't even looked at my history and with a history like that i can only think the worst.

I am much calmer today. When i asked if there was an issue with the placenta what could they do and she said nothing i thought that would mean i would have to terminate or loose the pregnancy but having scoured the net i can see that is not necessarily that case but i might end up with an early birth and small baby.

The weird thing is i am on aspirin for the bloody placenta as a precaution due to my stillbirth. Typical! I will have a look at the calculator. Thank you.

It's only an anecdote, but despite my super-high HCG levels, I ended up with big babies - 9lb 8oz for DD1 - even though I am petite build and DH and I were both small babies. High HCG is not necessarily indicative of growth problems.

Thank you @Childrenofthesun that us helpful to know!

Sorry to keep bothering you @Childrenofthesun but if you dont mind me asking, how old were you when you got the higher risk result? I am 33.

I was 34 in my second pregnancy. Risk seems to go up quite a bit each year in your 40s. I was 32 in my first pregnancy with almost identical HCG levels but a couple of years younger and a much smaller NT measurement seemed to make the overall risk lower.

Sorry, 30s!

Thank you vert much @Childrenofthesun.

I think i have come to a decision in my head that should everything be fine on the scan on Tuesday which fingers crossed it will be as nothing was picked up Thursday and i was scanned thoroughly three times then i will opt for the quadruple screening. By the time that comes back i would be 15 weeks and would reluctantly have the amnio if needs be.

I suppose having the amnio would put our minds at rest for the rest of the pregnancy. Hopefully.

Hi, didn't want to read and run, I can't really offer any advice, but ust want to say good luck, really hope everything turns out to be okay. Xxx

Hope the scan goes well.

Thank you everyone. I will update once i have been.

Hi there, I had a BMI of 34 at booking in and was on labetalol for high blood pressure. Was put on aspirin too as it is known to reduce the risk of pre-eclampsia and is recommended for high blood pressure in pregnant women in addition to suspected placenta issues.
I had low amniotic fluid all pregnancy, baby didn't move during scans, they couldn't get the NT and I needed a total of 5 anomaly scans and a referral to a fetal medicine unit to get all the anomaly scan measurements. I had scans then every two weeks. I had about 16 scans the whole pregnancy. I was induced at 38 weeks due to low fluid and low growth, baby was small, on the 9th centile but healthy. The doctor remarked on how tiny the placenta was when she delivered it.
I can't remember my HCG screen but my downs risk was 1:310.
If I could do it again, I would have got the nipt, as I worried the whole pregnancy. Initially they thought the low fluid was because something was wrong with my baby.

You have had a difficult time, please try not to worry. You should be consultant led considering your history, can you ask for this?
I wish you the best of luck.

Hi @Belliniteeny thank you for getting back to me i appreciate it. Glad you had a good outcome.

If we could afford the nipt / harmony it would definitely be the route we would choose and i have thought of ways we could do it but the bottom line is if it came back high risk i would still require the amnio. It seems like a lot of money which we dont have to spend should i still need the amnio.

Fortunately i am consultant led and met the consultant Thursday although obviously at that point there were no concerns.

My history is tricky. My stillborn son had a condition called PFFD. It is not a chromosonal condition or genetic and not thought to recur. There was no issue with his placenta reported either during pregnancy or post mortem.

Triploidy again is not genetic and was a one in a x amount chance of occuring and just because it has happened once does not increase your risk for it happening again.

Triploidy and pffd have no links whatsoever. Basically i have been very unlucky so although consultant led it will just to be to keep an eye on me and support me more than anything. They are not looking out for anything in particular altho i appreciate my high bmi wont be helping things.