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 💔

I’m sorry to read your post. I have had three miscarriages and now the utter despair they bring.

This situation happened to me last November. They couldn’t see anything on a scan. HCG went down very slowly from 420 but then suddenly a big drop and it was over. Time goes so slowly when you’re waiting for it go down.

I am very sorry this is happening to you.

I'm the same, I definitely want to avoid surgery of course but having read about the injection it also put a decent amount of fear into me @H20202

I will keep you all updated here. My boobs are still definitely sensitive. It's all so strange as I would have said I have miscarried / in the middle of but over the worst so I was shocked when they said HCG 91.

Thanks @Laurabeee - I'm hoping that it's a sudden drop or that it was a mistake with the higher number.

I just honestly want this nightmare to be over x

@H20202 that is terrible they want to wait a week!
Mine was 140 by the time I had the op.
I really wanted the injection as I was scared of surgery but they said it wasn't worth the risk.
After I was so glad I went straight for surgery as it was over and done with.
I read a lot of bad stories about the injection that it doesn't always work then have to have the op anyway but they still have to wait 3 month to ttc due to the injection.
If they catch it early rather than waiting you don't loose a tube as well, it's when they wait and it ruptures that they usually have to remove.
As I went straight to surgery I didn't loose tube and they just removed ectopic and repaired my tube.
This was 12 months ago and I'm currently half way through my next pregnancy so there's still hope after.
Defo don't let them make you wait a week for their decision that's not fair at all x

@Lillybobs86 that’s really helpful to know that they operated but saved the tube. The dr didn’t even talk about that with me, just said they take the tube to ensure they’ve got it all. Seems drastic doesn’t it!?
I’ll definitely discuss that with them next week, I don’t see why it wouldn’t be an option. I’ve read the scarring can increase chances of a further ectopic in the tube but she did say mine was really small.
she described it as a blood clot at first but I think because the hcg is rising they can assume it’s pregnancy cells.

conngratualtions on being half way through your pregnancy 🩵🩵 really lovely to hear after all you’ve been through xx

I'm literally so mentally drained...

I went to gynaecology for 10am for bloods and to see next steps. They insisted I stayed whilst we got the results which would be an hour / an hour and a half. I did ask if I could go home and come back but they're so sweet that I agreed to stay.

Four and a half hours later I find out that my numbers have dropped slightly, either 73 or 75 she couldn't remember, from the 91 on Friday.

I'm back again on Wednesday. They could have literally just told me this over the phone. I'm so fed up right now.

I’m so sorry. They are heading in the right direction. Mine fell by 20-30 a day and then suddenly went from
about 80 to 19. They don’t seem to have to get to 0 just below 20 I think they said.

Really hope you get to move on from this and get your good news soon. Xx

@MrsAlexander I just took a pregnancy test no line on there but my numbers were really low 80 was my highest urs will go down soon its so tiring mentally I understand, i hope it is all over for you soon x

I feel for you so much. The up and down of it is mentally exhausting. I am pleased for you though that they’re moving in the right direction again, fingers crossed for Wednesday for another drop.

@Laurabeee reassuring to know yours did a big drop from 80 - thanks for sharing.

I’ve also been back today for bloods - it was so busy in there and people complaining they’d been there 4-5hours so just said I’m not waiting 4 hours for blood results, hoping they call tonight and then can decide to go forward with the methotrexate if it’s rising or wait a little longer if it’s declining. Praying I don’t need the injection but not looking likely from last weeks scan 😩

xx

Thanks @Laurabeee - they told me under 25 they'd be happy with. I think today just took it out of me as when I arrived thinking I was having a normal blood test and go... then they started putting a hospital band with my name and DOB on and I got panicky!

I'm praying for another drop Wednesday but as it was 75 last month, 91 Friday, 73 or 75 today... it isn't doing an awful lot.

I hope you can escape intervention too @H20202 - please keep us updated x

@MrsAlexander hey just an update that my bloods went back up yesterday to 159 - I decided on the methotrexate today as it’s been three weeks now of stress and ups and down and just need certainty and to start to draw a line under it. Keep us posted on your bloods, really hoping for the best for you xx

How are you feeling @H20202 ?

I went for my 7th blood test at 9am. I told them I couldn't wait for the results and if someone could call me. 21:40 tonight the doctor called, they've had discussions about the results. I've gone from 73 Monday to 82 tonight. They want to give it longer to see what the numbers are like on Sunday so I'm back for another blood test then. I''m genuinely terrified this PUL is going to suddenly rupture as an ectopic.

He said they go by what the patients symptoms are etc and at the moment I'm not showing signs of it so it's unusual but they want to monitor it Sunday. I've genuinely not been as afraid in my life.

@MrsAlexander Physically I’m feeling ok, tiredness, sore abdomen and sore lower back but pretty much had that throughout so not much change.
I’ve read some don’t have any symptoms until at least day 3/4 so not panicking if I don’t as long as my hcg starts to fall. Back for day 4 testing tomorrow - hcg often goes up as takes a while for it to kick in. I think day 7 (next Tuesday) is when I’ll be most anxious as it should have called by at least 15% by then.

I’m so sorry you’re in such limbo with the hcg. It’s truly exhausting with the back and forth and ups and downs.
My case ended up with the consultants at a MD team meeting as it was ‘unusual’, so I saw a consultant last time. She said given we can’t see the growth on the scans and the hcg is relatively low she’d be extremely surprised if I ruptured and would have supported longer expectant management if I had opted for that. I just couldn’t take anymore of the overthinking and assuming the worse so the injection was the best option (mentally) for me. I don’t want to say you wouldn’t rupture as I suppose you never know but given you’re asymptomatic and hcg low continuing with EM is just a viable option. I was on the fence myself but given my body has already tried to miscarry it and I was having no similar symptoms since the 23rd, I thought it best to take control with the medication.

I really hope you’re ok, I know how awful this is xx

Sorry back for day 4 bloods on Saturday not tomorrow xx

How are you feeling @H20202 ?

I went for my 8th blood test yesterday, the results came back this morning. We have gone from 82 last Wednesday to 115 yesterday. The doctor gave me the option of waiting longer and continuing blood tests or now going for Methotrexate. She said the concern is usually for HCG over 1000 which obviously mine isn't anywhere near but it's still possible it's ectopic and it's how long I'm prepared to wait so I've opted for it.

I've been told I'm to go in to have blood tests, measured height and weight tomorrow and then the pharmacy will prepare it for me to return to hospital hopefully later on tomorrow. Never had an injection in my bum before so hoping it's better than arm?!

I'll keep updating this thread for anyone who reads this later on and wants to know.

Sorry to hear you are still going through this :(
I'm confused why they are not doing an ultrasound?
My hcg was at 140 when they saw my ectopic and I was rushed to theatre that day at 4pm.
After the op they said if I hant gone for op, I could have not been here anymore by 8pm due to possible rupture and internal bleeding.
Ive not heard of them dragging it out so long like this before - can you push for scan and immediate intervention?
They seem quite relaxed and that's worry as it's your life in their hands :( 💐

I've had one ultrasound the Friday before last when I was at 91 HCG and they couldn't see anything anywhere.

I'm hoping this treatment will be the final stage to all of this. Everyone around me is telling me how strong I am but I don't feel it right now at all. I just don't understand what I did in life to deserve all of these miscarriages and failed pregnancies 💔

@MrsAlexander oh no we both seem to be in a similar boat, I’m sorry you’re still going through this all.

so I had the MTX on Tuesday last week - I did have a scan before deciding on that though so as @Lillybobs86 mentioned, it may be worth asking for one?

The jab it’s self was pretty painless, just the usual sharp scratch and the injection site throbbed for about 10 mins after but nothing I’d describe as painful.
So far any symptoms have just looked the same as what I’ve been having for weeks anyway - some tiredness, nausea, a tender abdomen and some pinching pains. No cramps or bleeding - however I have already technically miscarried so that may explain the lack of bleeding & cramping.

my bloods were 159 on Tuesday and the day 4 was 211 which I was really upset about. I know it’s normal for them to spike on day 4 as the MTX takes time to work but it just fed into my fear of it not working.

Im back at midday tomorrow for my day 7 bloods and they also want to do another scan (I think they were surprised by the increase despite it being quite normal).

scan wise, there’s seems to be a general consensus that you won’t be able to see anything with a hcg under 1000 - yet they saw the clot in my tube and also saw an ovarian cyst so don’t let them put you off if it’s what you want and will help you make your decision on the MTX.

all in all, please try not to panic too much about the MTX, obviously we are all different but it’s been pretty straightforward and painless for me (so far).
if I need another injection tomorrow, I that might alter my experience but I’ll keep you all posted.

sending you a big hug, it’s an awful situation but you got this xx

How did you get on today @H20202?

I've not long come home from my day at hospital to have Methotrexate in both butt cheeks - one is defo Turkey feeling bruised whilst the other is ok 🫠

I cried bucketloads whilst they took three vials of blood, I'm so over all of these constant blood tests.

Anyway, todays result showed that Sunday was 115 and today I was 118 so it was slowly creeping up - I knew then I'd made the right decision to not wait any longer and go for the injections.

They've said mouth ulcers and sore bones are many of the potential side effects so I'm keeping everything crossed that I am finally shown some mercy in life and don't experience many, or any of them.

Hi @MrsAlexander oh I’m sorry about the both but cheeks! Hope you are feeling a little better being home??
really hope you will be well looked after and you’re recovery goes smoothly.

today wasn’t good news for me sadly.

Day 1: MTX injected (141 hcg)
Day 4: 221 hcg
Day 7: 214 hcg
only a 3% drop

So back to the drawing board of waiting, a second shot of MTX, or surgery.

I had a further scan and they are certain they can see the ectopic between my
Ovary and Uterus so are leaning towards operating as I’m now technically 10 weeks ‘pregnant’ and I have been in and out of the EPAU since I was 6 weeks.

I think I’m going to have some bloods done at the end of the week and if a miracle hasn’t happened; go for the surgery.

They don’t need to admit me as I’m well and pretty symptomless and I’m not classed as an emergency just yet. They said I could get in as soon as tomorrow or as late as the end of the week depending on what comes up and me not getting any more unwell.

dont feel like this nightmare is ever going to end xx

Oh no @H20202 - I'm so sorry to read that! I feel the same - when is this whole nightmare going to end and it stops consuming everything. I have a lot of friends checking up on me but it's just there every waking moment.

They told me today that a HCG of under 1000 like mine they would hope todays treatment should do it but clearly that doesn't seem to be the case for you.

When will you be having the next one or are you now jumping straight to surgery? I suppose it's different for you as they know yours is ectopic where as they told me today mines PUL as far as they're concerned which isnt really helpful 🫠

@MrsAlexander ive take then night to sleep on it. Just can’t decide if I should try a second dose or jump to surgery. The dr said totally my decision but she would lean towards surgery now it’s been located and I’m already 4 weeks along of interventions and blood tests.
a natural miscarriage didn’t resolve it, MTX didn’t shift it, is it worth bothering with another does?

I feel like I’m consistently the minority percentage - 1/2 in 100 chance of ectopic, in the 7% club for MTX not working. If I have surgery or another shot, will it be the same!?

if it’s helpful my first scan showed nothing, my second showed what looked like to be a clot on the right side, third showed the clot had dissolved but a cyst in the ovary. And fourth scan today she’s very certain the ectopic is in the left tube. The last two scans have been by consultants themselves and they’ve been far longer, more detailed and talking me through everything their seeing.
theyre really sympathetic when I go in, totally getting how frustrating it is to be no further on 4 weeks, 4 scans and 10 blood tests later.

praying you’re in the straightforward club!! Do let me know how you get on and if you have any qs I can help with given I’m a few days ahead of you in this process just ask. Xx

Awww @H20202 - I feel for you and you know I genuinely do understand as our stories seem so close together - even our numbers being similar. How are you doing now?

My bum has been sore where the injection was, particularly one cheek which I knew immediately felt different to the other. Apart from that I haven't had any side effect at all at this point but I'm bracing myself for something as it kicks in - who knows!

@MrsAlexander eh really hope the MTX isn’t too rough on you and your levels come down as hoped! Keep me posted x

i took 48 hours to think about what to do and I’ve just been back in (with my hospital back incase they wanted to go straight to surgery today) and low and behold, my levels have dropped to 151, a 30% decrease!!! I can’t believe it. They were ready to give me more MTX on Tuesday as well, I’m so glad I waited a few more days.

PRAYING it’s straightforward now and they continue to drop.

Ahhh that's great news! So although it's not the 50% drop yet are they thinking it will continue to drop now? It's good you held off, it just goes to show now to jump at things really! Have you had any noticeable side effects of it now you're 9 days on?

I think it's the unknown for me, scared as I've read people can just go dizzy or have stomach cramps... I haven't yet but it's only day 2 for me.

@MrsAlexander it’s only 50% when you’re looking at hcg rising. After the MTX they want to see a 15% decrease between day 4-7.

Day 4 mine rose 56% (apparently they expect an increase on day 4 but I read online that if the increase is over 50% it can suggest failure / 2nd dose required).
Day 7 dropped 3% *needed to be at least 15%
Day 9 - 30% drop

the nurse said it could be that my body has taken a little longer to respond or my body is responding naturally. If it had dropped less they may still have suggested second MTX but they said because it was a substantial drop they were happy to wait and re take bloods next week.

so my hormone is now pretty much what it was when I took the MTX so feel like I’ve got nowhere in 10 days but at least now it’s going in the right direction! Really hope next week it continues to drop. If it plateaus though i think I’ll take the 2nd jab.

just relax as much as you can, lots of sleep and self care. As long as you’re prepared mentally for what might come and have painkillers, hot water bottle, pads etc etc there’s not much else you can do. I hope you’ve got people looking after you? Xx