Slow declining HCG

[MrsAlexander]

Long story short... 38, three miscarriages, no living children, always felt I had a progesterone deficiency but stuck in a long queue for referrals to the recurrent miscarriage client.

Last Monday I was 5w:d and started to get wipe pinky wet, very very occasionally more of a red. Spoke to EPU and they did a blood test, HCG was 151.

Pinky wet continued, had another test Thursday and I had a conversation with the senior nurse about progesterone. She spoke to the consultant and they agreed on six weeks worth prescribed - finally have all these years of my asking 💔 only for me to find out two hours later that the HCG is 132 and they believe it's a loss. I am told progesterone will not help now.

Pinky wet continues (sometimes it does go away completely) and blood test Saturday shows 109. They tell me they need me back on Monday as it's dropping very slowly. They also say if I suddenly get severe pains I need to go to A&E right away. I ask if that's because they think it could be ectopic and they say not to scare me but yes due to it dropping slowly.

Honestly I'm petrified, numb from this now being my fourth loss. Has anyone had it where it's dropped similarly and suddenly dropped down? I really want to avoid any sort of medical management or surgery. Boobs are still tender today and I did a pregnancy test and the line is still very visible - about 70% as dark the control line 💔

Sorry to hear your going through this :(
Have you had a scan?
If they suspect ectopic they really should have scanned you and checked uterus and tubes.
I was about 5 weeks when the ectopic showed up on the scan x

Thanks @Lillybobs86

No scan yet - she told me anything under 2000 HCG doesn't show on scans?

They've said I'm back tomorrow for bloods, see what they say. After that it might be a scan but the consultant will decide. Worrying myself sick of it to be honest - mentally exhausted and freaking out I'll suddenly become in pain.

@MrsAlexander that's terrible they left you like that you should insist on a scan or a second opinion.
That's not necessarily true my HCG was at 140 when they saw an ectopic in my tube.
Can you go somewhere privately to get an urgent scan?

Oh really @Lillybobs86 - well that's worth knowing. I was at 109 yesterday and it seems I'm dropping 20-30 so I'm hoping to be around 90 or below in the morning.

The EPU are lovely, don't get me wrong and maybe their thoughts of the chances of ectopic are low for me but still a possibility? I'm not sure. Genuinely praying for a sudden drop in HCG for tomorrow to miscarry naturally.

Did you bleed at those sort of levels? It's so strange as it's so so vague - almost unnoticeable at times. No pain. Definitely stops too.

Yes I was having random spotting but it wasn't constant.
I had agonising pain down my left leg one night ended up in A&E however they still couldn't see an ectopic and my HCG was at 80.
No pain after that at all.
A week later I went back for scan and they saw in my tube.
I'm 37 and apparently our risks are higher over 35 but I hope something happens naturally for you :(
I am pregnant now in a successful pregnancy so there's still hope 🙏🏽❤️

Aww congratulations @Lillybobs86 - that's lovely news 🥰

So I presume your HCG was rising for them to not see it one week and see it the next week?

Im going down so really praying this isn't ectopic and I can get over this. I can't really envision trying again but the one thing is I finally have the progesterone so if I do I have hope that the next one will be my rainbow ♥️ x

@MrsAlexander I’m so sorry you are going through this ❤️
I had a somewhat similar experience in February other than the spotting. My HCG was initially rising slowly and when it was around 600 it started dropping down slowly too. Unfortunately it took about 2 weeks for it to fully come down and I had to keep getting bloods done every two days which was an emotionally difficult and heartbreaking experience as had to go to the maternity hospital.
I hope things work out quickly for you and without any intervention and you can start the grieving process x

Thank you @FrostedFlake - I'm so sorry to read you've been in this position.

I assume yours wasn't ectopic and for whatever reason it just went down slowly? Mine seems to be 20-30 every 48 hours which is painfully slow. Assuming mine isn't ectopic (fingers crossed) I'm not sure at what stage I will actually miscarry / get my period.

I'll update this post with whatever happens next x

Bloods this morning... HCG is down to 75 and now I go back Friday for another but she did say she expects for me to start bleeding by then. As awful as it sounds, I hope so too and to miscarry naturally.

@MrsAlexander hi just like to jump on if u don't mind you sound as though you are going through same thing as me I am on another thread on here but I've been googling like mad and just seen yours , from last Monday I was at 39 bloods it went to 48 two days later ,then 2 days later on Friday just gone 80, I've been the same I started off pinky then stopping then been gradually getting red only when wiping though but today ive wore a pad to see and its gradually making an apperance more redder n bit more of it but im not bleeding just yet , I went back today and my bloods came back at 47 so i am definitely losing it.. i've got really bad back ache at the bottom of my back that started today, but im the same really though wondering when it will all just be over im sure it should be (well I hope by Saturday ish,) I'm trying to go off how a period is im clutching really, I am the same way as I would rather it has to be this way than an eptopic they have been on the look out for ,i just want it over now its so mind draining 😩 x

@MrsAlexander @Roses12345 hi I'm sorry both of you are experiencing this I'm also going through something similar, had 2-3 weeks on a CB digital last week then did another yesterday expecting 3+ but instead said 1-2, so I spoke to my GP and got bloods done and at 5 weeks my hcg was only at 98. I'm going to have a repeat blood test tomorrow as well as a scan at the EPU but the GP said to prepare myself for bad news as the levels are so low. It's horrible going through this, knowing somethings wrong but having to wait for the ti inevitable to happen 😞 I really hope it's not ectopic, I've been getting lower back ache for a while now and also started having shoulder pain, but it's not in the tips of my shoulders but don't know if that specifically matters..

@naggy095 sorry you are going through this too its awful, well I went first when I felt shoulder pain it wasn't in the tip it was the back of my shoulder blade but maybe it is the fact of noticing every little thing I'm not sure but I hope you are not going through an eptopic and it is a natural misscarige (it's not even nice to say that but it's the better outcome I soppose) if its going to end anyway 😔 my back ache is not budging at the minute and ive took a codeine couple hours ago they prescribed me hoping im gunna bleed proper and it is over with soon its a shame how many of us actually go through this , please update if you feel up to it, I will keep posted for any future people on here and youse too x

Really sorry. It must be heartbreaking to have so many losses.

I'm only just seeing these posts. Sorry to read that I'm not alone in this.

For the past few days I kept thinking the bleeding was about to start... and it didn't. Then I thought it had yesterday morning as there was a streak of red... then there was nothing. I started properly yesterday afternoon and I believe I've now had the loss and have my period.

It's been so hard, I've cried. I've felt so hopeless. I've felt like a failure. Everyone is reminding me I now have progesterone I've been asking for for the next pregnancy but until I see the next positive my head is not there.

Sending my love to those going through this xx

@MrsAlexander I believe mine happened yesterday (the loss) from the bad back ache I woke up yesterday morning with cramps in my abdomen (bad period pain) all what i got was couple bits of what u get anyway in ur period them tiny little clotty bits nothing more than that I don't really know what I was expecting really I thought I would bleed bad but i just went from the pinky to redder n bit more but the pain was so bad in my lower back the codeine didn't even shift it, but yea between the bk ache n morning cramps I believe mine happened im nit heavy ir nothing I have gone bk like end of period now so I'm hoping il be bk ok soon.. aw please don't feel like you are a failure this happens so much as I far I have seen ❤️ and usually go on to have full term pregnancys I've been so down with it , but im also feeling that bit better now I know it's done it it's self (no eptopic) my bloating etc has gone I don't have any feeling of pregnancy now at all me take care of yourself x

It's awful isn't it @Roses12345 ? Mine was just bleeding with a little clotting. I had read that at my stage (5-6 weeks ish but who knows how behind it was) that I wasn't to see much. It was anything like my later losses. The bleeding isn't heavy at all now, I expect for it to be gone in a few days.

What gives me hope is although I typically take around 6-8 months to get pregnant again - it's likely ovulation will be a few weeks away and that means hope ♥️ even if I can't see it right now.

Sending hugs x

Hey all, just wanted to say I’m going through some thing similar too. I went to the EPAU 19/7 with cramping spotting and terrible back pain. I think my HCG was around 150 (5-6 weeks). I had a scan a few days later and it was a PUL.
2 days later I believe I misscarried - excruciating cramps and passed large clots - once this passed my bleeding stopped and didn’t start again. My hcg went down to 90.
I thought I would bleed more and I’ve been waiting but nothing, more blood tests which showed hcg reducing to 51.
However, I went back this week for follow up and what I hoped would a 0 hcg & confirmed miscarry to find out my hcg is going back up.

They told me to come back in a week which I wasn’t happy with and asked to come back in 48 hours and a scan. The nurse said she didn’t see what the point in a scan was as we wouldn't see anything but I insisted (after advice on here!). I thought there may be some retained tissue which had not passed, i wasn’t expecting to see a pregnancy.

attended yesterday and they can see a growth in my tube - so despite basically being laughed at for asking for a scan, they now think it’s ectopic. My bloods also have gone up again to 91. They said they could also see the growth on the first scan but the other nurse had missed it. I’ve been taking my pregnancy meds as normal as was hoping to try again after next period and now all I can think of is the folic acid has encouraged this growth. Why they didn’t tell me to stop it I don’t know.

trust your gut and don’t be afraid to ask for extra blood tests and scans

sending my best to you all x

@MrsAlexander sorry about what you are going through. Are you taking ubiquinol? Did you get the progesterone pessaries so you can use them next time fingers crossed?

@H20202 I went for my blood test this morning. I've bled for two days and figured that this is now a loss so I expected a very low HCG considering it has gone down to 75 on Monday.... it was 91. How strange it was the exact same number as you and had risen. I'm devastated that this feels like a never ending nightmare. I am now going back to EPU for a scan in an hour, I'll update this post.

@RiderofRohan I was given six weeks of Cyclogest which I didn't even get a chance to start. They've said I can have it for my next pregnancy but honestly - the way things are heading I don't think my heart could cope with any more right now.

I hope you’re ok xx

@MrsAlexander just came to check in so sorry to hear this is still going on for you without answers :(
Unfortunately that is what happened for me it was rising slowly and really does sound like something is growing somewhere slowly.
Like I said before please insist on a scan as this is your life in their hands, if they are unable to do now please find somewhere private this weekend as soon as you can.

@H20202 I am so sorry to hear this.
I have been there and it's so horrible how they don't take you seriously!
I had the same kind of treatment when I arrived in A&E with pains before they found the ectopic.
What is their plan now if they have discovered in your tube?
Once they discovered mine I was on the operating table within less than 2 hours.

Thinking of you both 💐

Back home from hospital...

Scanned. Right ovary looks normal... left ovary can't be seen (they couldn't see on my last pregnancy but apparently that's normal bowel can get in the way)

Can't see anything in the tubes.
Can't see anything in my uterus.
Cervix closed.

It's a pregnancy of unknown location... or is it? I don't even think it's there, I think it's miscarried.

She said that the consultant may suggest doing a procedure where they insert a thin tube and scratch the surface to help the miscarriage.

So here's my theory...
Last Tuesday 151
Last Thursday 132
Last Saturday 109
Monday 75

Since it's going down 20-30... would it not make sense for me to be around 19.... not 91. I feel like someone's accidentally switched the numbers and it should be 19!

I've been referred to gynaecology who said they aren't concerned, if I'm in pain it's A&E, if I'm unsure I can call them anytime. If not, I go Monday for another blood test.

Ah I’m relieved for you that your tubes look clear at the very least but such a confusing and unknowing time isn’t it.

Really hoping your bloods go down on Monday. I’ve been reading quite lot of peoples spikes up before falling again.

@Lillybobs86 they're pushing expectant management on me for another week and then more bloods. They have said I can elect to have medical treatment though if I prefer. because my Hcg is low (although going up and down) I think they think the risk of rupture is low.
I’ve called today (same nurse who tried to put me off having scan) and said I’m not really up for waiting a week, I’ll come in Tuesday for more bloods and go from there, if it goes up more, I’ll have the injection. If it’s down I’ll wait and repeat bloods.
Again, she tried to get me to wait a week and stay with the EM for as long as possible. I don’t fancy sitting around for weeks on end just waiting for a rupture so that’s not even an option.

In the nicest way possible I’ll be feeding this back to them as they might say some of the right things but they don’t half make you feel stupid for advocating for something different. And after her trying to put me off the scan they found the ectopic!!!

can’t wait for this to be all over, it’s mad how full circle it comes when only 3 weeks ago we were over the moon with a positive test. Xx

What you just said in that last sentence is everything @H20202.

I saw the faintest of faint lines on the 11th July. This would have been the first pregnancy with my OH so I told him but warned him not to get excited because of my history. We did still celebrate though eventually, we couldn't help it as the tests got darker.

It all just seems so confusing. If they've seen yours in a tube, why would they want at all? They never correct themselves I thought?

Time will tell if they've got my numbers the wrong way around... I'll know really Monday. I have genuinely felt like I've had a week like a walking time bomb, I bet you've felt / feeling the same ☹️

@MrsAlexander aww we also got our positive on the 11th and 12th 😩

I think because the hormone is low, not in the thousands and the growth small, they think my body has a good chance of dealing with it naturally, but if it is growing and hcg rises quick, I think they’ll change to advise medical options.

I suppose they want to avoid the medication if poss as the methotrexate can make you poorly, compromise your immune system and you can’t conceive for 3 months due to risk of abnormalities.

just feel my body has already tried to miscarry it once and don’t feel it’s moving towards trying again, I feel fine 😭

I’ll be thinking of you Monday, so let us know how you get on if you can xx