*update* Sensitive: HCG plateaued and clinic not offering any help

[Fruitandflowers]

As everyone has been so supportive and helpful a quick but rather sad update: went for a private scan today and they couldn't see anything like a viable pregnancy - just a mass of what they called septations (no idea), possibly a haematoma and fluid. They couldn't see the tubes and only one ovary (with a cyst apparently left over from collection - excellent) as everything was so swollen and I was in a lot of pain so I'm booked into the EPAU tomorrow first thing. I'm still getting strong positives on FRERs but only 2-3 on CBD which I guess in a way is good as it hopefully means wherever the pregnancy is it is has stopped developing or at least slowed right down so maybe I can avoid any damage. I just don't know right now. Am very worried about next steps. Thank you for your advice as if I hadn't asked on here I could have been in a very different position waiting for my clinic to eventually see me. x

+++++

Sorry if this is triggering for anyone but I'm just hoping for some advice as I'm getting nowhere with my clinic and GP. I had a 3d embryo transfer and initial HCG was a bit sporadic, but I felt good on OTD that I got 2-3 on CBD (so assuming over 150) and then 1,335 HCG 7 days later which seemed like good doubling. But I just got my last HCG back from 2 days later and it's 1,472, which to me seems like it's plateaued. My GP is saying he's not remotely concerned as it's going up and to get another HCG in a week if I really want. My clinic is saying they don't know how to interpret HCG (seriously!) and I should just wait for my scan at 7.5wks (am 6wks now). I've had two early losses where the HCG never got over 100 so this is a lot better, but on my successful pregnancy my levels were super high early on and would have been 10x these by now. I'm terrified of an ectopic and leaving it to cause damage (although I don't have any symptoms) but also that all the progesterone I'm on is just prolonging the inevitable. Any advice, especially from anyone who had slow/sporadic HCG or ectopics? Am freaking out and feeling very alone. Thank you wonderful community x

[Boo718]

could you get a private scan to put your mind at ease? Our doctor did say that the hcg goes up then levels off xxx try to stay positive I know it’s so hard xxx

[Fruitandflowers in reply to Boo718]

Thank you. That's all I can think to do bar going to the EPU but don't want to waste their time given I have no emergency type symptoms. I think HCG is meant to level off at much higher levels - I got to 21,000 fairly quickly on my successful pregnancy, then I think it sticks around that level, so I'm pretty far off that 😢

[Hidden in reply to Fruitandflowers]

So sorry you are in this position. I don't think you should see it as 'wasting EPU's time'. Hopefully all is fine and they will be able to give you the reassurance, but if it wasn't fine they would want to know sooner rather than later.. so I think you should self refer and they should see you given you are 6 weeks. I am sorry I can't really give you any more advice than that but am sending you a hug and crossing my fingers all is well xx

[Purpledoggy]

So sorry you’re going through this lovely. You could try to find a scan at another private place if you feel it would help and EPU won’t do it-there are lots of ultrasound only type places around. The only problem is sometimes you can’t see what you need to see this early and it might cause more stress. I don’t have further words of wisdom but just wanted to send a big virtual hug and will keep everything crossed for you xx

[DG2022]

don’t let them fob you off. Get to your EPU. I ended up with ectopic

[Fruitandflowers in reply to DG2022]

Do you mind me asking did you have any hcgs done? Or did you have any symptoms? I feel it has probably just ended like the earlier two and the whacking load of progesterone has just let it get further along, as I don't have symptoms - my GP said he spoke to the EPU after his call with me and they said without symptoms I should just wait for a repeat HCG on Monday.

[DG2022 in reply to Fruitandflowers]

I didn’t have any symptoms either. Just my hcg wasn’t rising as it should. Gp were reluctant to do hcg testing so sent me to EPU after I kicked up a fuss…so they did my hcgs 48 hours apart then I had a scan x

[Fruitandflowers in reply to DG2022]

Thank you. My GP was so blazé and even confident that everything was fine but literally a quick Google search says not doubling at this stage is bad news so I called a second time and gave a bit more history and only then did he agreed to speak to the EPU. My clinic were useless too - the nurse actually said that my stress hormones worrying about this could be doing damage to the embryo! I'm not convinced about waiting until Monday for HCG and then further delays to get the results so I've booked a private scan on Sunday (earliest I could get). It's awful to now just be wanting it to be a 'standard' missed miscarriage.

[DG2022 in reply to Fruitandflowers]

that’s really poor of your clinic. You can’t change the outcome, that must make you feel awful I’m sorry 😞 You also shouldn’t have to explain this to a GP but their knowledge of this subject is shocking. I was the same, hoping for missed miscarriage. My hcg only rose to 3000 at 7 weeks and it rose slowly to that point. It was too big so they had to do surgery. I was gutted. Hope you have a better outcome xx

[Fruitandflowers in reply to DG2022]

I was a bit gobsmacked. I'm really sorry you had to go through this and that you needed surgery - that's my fear with the longer I leave it.

[minnesota_girl]

Don't worry about wasting time, your situation warrants going to the EPU and/or a private scan. Do what you need to do xx

[Tir-26]

your not wasting time in EPU. I think some medical professionals are very quick to treat IVF patients as over anxious but you know your body, ask questions. I was told hCG can vary significantly and from one pregnancy to the next. Have you any pain or reduced systoms? Its vey difficult but don’t lose hope, do what u need to do

[Fruitandflowers in reply to Tir-26]

Thank you. Yeah that's how they're making me feel. Just telling me to stop being anxious and to wait. It's really difficult to tell with the symptoms - I think a lot of it at this stage is the progesterone as so much of it (like nausea and tiredness) kicked in before the HCG was little more than a trace. But certainly at this stage with my successful pregnancy I had a lot more obvious pregnancy symptoms by this point and that's all I can compare it with. I also can't tell what's a worrying symptom and not as if I hadn't had the second HCG result I would be putting the twinges, lightheadedness and generally feeling off, down to a normal progressing pregnancy. I'm going to see how I feel later today and if I'm still worried then I'll ask again about the EPU and an early scan.

[Rhubarb5]

How many weeks are you? You need to go to EPU and be under their care.

[Fruitandflowers in reply to Rhubarb5]

6 weeks. I will try the EPU later today as I'm not sure my GP really explained the context to them and given he said it's absolutely no concern for HCG not to double I am a little worried about his knowledge on this and what he may have said.

[MJE1]

Hey,

I’m sorry you’re finding yourself in such limbo, as us IVF patients often do.

If you can’t get to been seen at EPU, can you call your clinic and just make a bit of a fuss? You’re paying them for an extra scan so it’s not really any issue for them, I can’t see why they are being so difficult when they are there to support you. Even if you can’t see what needs to be seen embryo wise, they can at least tell you if the sac is located in your uterus . Also, the words about stress damaging your embryo is only going to stress you out more- they don’t seem too compassionate and perhaps you may wish to bring this up when you feel stronger.

I really hope you get some answers xx.

[Fruitandflowers in reply to MJE1]

My clinic are pretty useless. Last time I had a loss they didn't call me back for three months to have a debrief, they just said stop taking the meds and left me to it. I asked yesterday if they would scan me as it's only a week early and the nurse said they aren't qualified to do those scans and not qualified to interpret HCG - this is an NHS clinic btw.... Once she started talking about stress harming the embryo (even suggested that what I had eaten may have impacted the HCG!) I pretty much gave up. I will be complaining but yes right now I just want someone competent to help. Argh, this process

[Hidden in reply to Fruitandflowers]

Sorry to jump on… but your Clinic sounds awful! They are saying things that simply aren’t true! Stress hormones have no effect on the out come of a pregnancy and what you eat has no effect on HCG!! I would definitely be complaining post scan. I’m so sorry that at such a difficult and stressful time you are having to deal with that on top!

I would definitely suggest going to EPU as above comments suggest. Your health and well-being is important and a potential ectopic is a serious concern. The HCG doubling doesn’t sound great, but I would say symptoms don’t mean a thing. I didn’t have any real symptoms until I was 8 or 9 weeks and I had twins!

Wishing you all the sticky luck and hoping for positive outcome for you.

Xx

Ps my experience is that GPS don’t know very much about this stuff unless they have specialised. I’d def make a fuss xx

[Fruitandflowers in reply to Hidden]

Thanks - yes, I was pretty shocked and I had a very healthy LG last year despite being full of 'stress hormones' throughout the pregnancy so I know it's rubbish but I couldn't bring myself to argue right then. And the food thing... This is also the same clinic that told me when I had an early loss that it was 'just' a chemical and it meant that I was never really pregnant.

[Hidden in reply to Fruitandflowers]

Oh my god!! I can’t believe they could be so insensitive. I might be tempted to complain to the HFEA about the clinic. It sounds awful. I might also consider moving clinics if this cycle is unsuccessful! I would look at if there are any other NHS clinics you could transfer to! Xx

[Fruitandflowers in reply to Hidden]

Yep, they're pretty abysmal when it comes to patient support. And we're paying privately as we only got one NHS round.so that adds insult to injury. But the nearest alternative is a 4hr round trip and I thought how bad can they be?...

[MJE1]

I’m so sorry to hear this! I understand now a bit more that it’s an NHS clinic- they don’t often have the resources to do the extra bits private clinics can but no excuse for the way they spoke to you.

To try for an earlier scan try ultra sound direct, window to the womb, Nuffield and any more local places/clinics that come up in google maps.

You could also try the Clear Blue How Many Weeks again. The threshold is 2753 for 3+ weeks, though this may cause you more distress if you don’t see the result you want xxx

[Hidden in reply to MJE1]

Just to say be careful with the CB Weeks - HCG in urine is much lower than blood HCG. They caused me to really worry as I had a blood HCG of 900 but the weeks indicator was suggesting much lower when I did the urine tests... it was only with googling I discovered the HCG would be very different xx

[Fruitandflowers in reply to Hidden]

I was still getting 2-3wks a couple of days ago which was consistent with my non-doubling blood levels but I just don't want to give CB any more of my money! I liked them as a gimmick at first but think I'll steer clear while my head is scrambled.

[Fruitandflowers in reply to MJE1]

Thanks - have booked on for Sunday as seems to be the only one with availability but may end up going to EPU later as I just want to know now.

[Fruitandflowers in reply to MJE1]

Oh and to add (the ranting is helping!) although it's an NHS clinic, I am paying privately there as I only got one round of NHS funding, so it's the worst of both worlds, but we don't really have much choice in our area.

[Msze]

I had a sumilar situation, and a similar reaction from my doctor my last pregnancy- the one that gave me my daughter 😊. I also suffered many early losses and struggled to get pregnant for 5 years so I became obsessed with montoring the hcg levels. I seem to recall after it hit 1400 or so it did stop doubling for me but kept rising. I was scared and demanded more blood tests. My doctor wasn’t concerned. For me, it all worked out. I hope the same for you.

[Fruitandflowers in reply to Msze]

That's fantastic to hear! I think it's that I'm looking at basically a 10% increase in two days after doubling pretty well for a week, so it's not even close to what it should be doing - even if it was 30% I'd be kind of giving it a chance but this just seems pretty stark. If I'm wrong I will be absolutely over the moon but I am trying to prepare myself x

[Hidden]

I was worried about my HCG in the first few weeks. I did 2 private HCG tests. They were quite easy to arrange and results were quick. If you still want to track your HCG rather than going for a scan (I think they only scan from 6 weeks - but might be different if you go to EPU with suspected ectopic so if that’s a worry then definitely ask them!).

Hope that helps!

[Fruitandflowers in reply to Hidden]

Thank you - I have a medichecks kit for just such an eventually but I found that with the post and the lab not working over a weekend, I won't get the results back until next week now anyway. If it goes up suddenly again I'll still worry about an ectopic so I think a scan is the only answer right now

[Hidden in reply to Fruitandflowers]

good that you know what you need. I hope you get the scan arranged and that all goes well for you x

[DreamingOfTwo79]

I am so sorry you are going through such a worrying time. With your history of loss the EPAU should offer you the care you need right now. In my area they won't take self-referrals so worth checking with your unit if you need a referral from your GP. It's such a fine line between not wanting to panic someone in the early stages of pregnancy and being dismissive of their concerns. I've found the nurses at my EPAU really best equipped to deal with any worries I had in my previous pregnancies. They would never think that you are wasting their time as they completely understand what an anxiety ridden time these first few weeks of pregnancy can be for some of us. I'm wishing you all the best and keeping everything crossed that you will get some guidance soon on where this is going. Will be thinking of you! xx

[Fruitandflowers in reply to DreamingOfTwo79]

Thank you so much. That's a good point re self-referrals - I have no idea so I'll check.

[DreamingOfTwo79 in reply to Fruitandflowers]

Hey lovely, just checking in to see how you are feeling today? Did you manage to get an appointment with your EPAU? Thinking of you x

[Fruitandflowers in reply to DreamingOfTwo79]

Thank you so much for checking in on me! Turns out you were spot on re needing a GP referral - spoke to the GP again who in turn spoke to the EPU and they've offered me an appointment on Monday as weirdly they only have a staffed clinic some of the time and out of these times you just have to go and sit in a&e. I also saw the GP in person finally and he seemed to think I didn't need more urgent attention and just said go to A&E over weekend if I get any symptoms. I've kept my private scan for tomorrow so hopefully that will at least give me an idea of what's going on. I really do find all this so slow and like there are barriers to getting treatment unless you basically collapse. x

[DreamingOfTwo79 in reply to Fruitandflowers]

Oh I can so relate to the frustration all this waiting causes when all we want is someone to take the time to check things and give us some reassurance or answers. I'm so pleased you got yourself referred to the EPAU via your GP, well done! The private scan on Sunday will definitely give you at least some indication, and the nurses at the EPAU can also look into your beta hCG and monitor this for you. It feels extra unfair when all this happens around the weekend and you feel like no one is available to help. I don't want to scare you and it may well be different for your area but it's worth bearing in mind that A&E often don't have the means to treat patients in early pregnancy as the relevant units (MDAU and EPAU) are either not responsible for you yet or not staffed on weekends so they can't scan you. Having that private scan booked is fantastic and not long to wait now, keeping it all crossed for you that you will get encouraging news at your scan tomorrow! X

[ForABabyPanda]

what I will say is that progesterone doesn’t necessarily prolong the inevitable - when I had my failed IVF I bled while still on progesterone and one day before OTD. So the fact you’ve not bled is still good news!

[Fruitandflowers in reply to ForABabyPanda]

Thank you x

[Purpledoggy]

How did you get on today lovely? Hope all is ok xx

[Fruitandflowers in reply to Purpledoggy]

Thank you sooooo much for checking. Not good I'm afraid. I've put an update as an edit to the post. Now can only hope (thanks to everyone on here!) that we've caught it in time not to have done any damage. Will hopefully know a bit more tomorrow x

[Purpledoggy in reply to Fruitandflowers]

Ah I’m so sorry to see this. What a horrid situation 😔 sending you a massive hug xx

[Fruitandflowers in reply to Purpledoggy]

Thank you x

[Solly-44]

Oh I’m so sorry love, how utterly shit. Sending the biggest hug and will be thinking of you tomorrow xx

[DreamingOfTwo79]

I am so sorry it wasn't better news and you're going through this, lovely! Wishing you a lot of strength for your EPAU appointment this morning. They will be best placed to let you know what exactly is happening and what your next steps are. Sending a big hug, will be thinking of you! xx

[Hidden]

Thinking of you this morning x