Fluctuating HCG

[Lys90]

A week ago I had a positive home pregnancy test following a frozen embryo transfer (IVF). On Monday (4+1) it was confirmed with HCG 108. I retook HCG on Thursday and it was 88. I assumed I would have a chemical pregnancy and it would resolve itself but wanted to check that HCG kept declining. On Friday (4+5) it was up to 104 again. I’m at a loss, I have never heard of this except ONE online discussion I found where two women with ectopic pregnancies had similar experiences. Other than that I can find no information except this seems to be highly abnormal. I have had no spotting/bleeding but some mild and fleeting abdominal discomfort since around implantation (3 days post transfer of 5 day blastocyst). It’s so mild, honestly it could be gas. The reason I suspect ectopic is sometimes I feel a mild jab around my left ovary. Around one time per day since ovulation. Any thoughts or similar experiences with ectopic? I have tried to talk to my GP and clinic but they seem clueless.

[ChaoticBlues]

Hi,

So I’ve not had the exact same experience but I did have a fresh transfer via ivf which resulted in an ectopic. At 5 weeks I had side pain, then bled..my HCG was high, then low and then high, the scan saw no baby so all those symptom said pregnancy in an unknown location. You’re right fluctuation of HCG they equal to ectopic whilst HCG just decreasing they class as a miscarriage.

I would say ask your doctor to be referred to the early pregnancy unit at your local hospital so you can be scanned and they can get a better idea. IVF clinics won’t scan you until your at least 6 weeks.

My experience was bad because my HCG was 8000 at one point so it took 12 weeks to lose the pregnancy, physically very painfully, so with your HCG this low if it Is ectopic it sounds like you can be easily treated.

Please do update.

[Lys90]

Thank you so much for the response. It’s good to know what to expect. I will see my GP tomorrow, but I’m guessing it will be a waiting game for a while, just watching the HCG levels for a while, until ultrasound is possible (5 weeks today) or I start bleeding.

I went to an outpatient clinic today, but they just wanted to take my temperature, my CRP, check if I had a UTI, and the doctor was like “with those HCG levels I don’t know if you are pregnant” and he said he did not suspect ectopic. As if my HCG levels could indicate anything other than pregnancy (at some level)? I know HCG could be present in some cancers too but seriously what are the odds I should get cancer at exactly two weeks post egg transfer? I have never had positive HCG before. The stupidity is killing me.

[ChaoticBlues]

Hey,

I had a similar thing. So when I suspected i had an ectopic, I went to A and E and I waited 6 hours where they didn't look me over. I thought me saying ectopic was a little like saying chest pains as in they would take it seriously. When they finally saw me they took my blood and i thought yay they're going to get me HCG count. No it was to look at my bloods for like iron etc. I had to beg for a scan, but it was the weekend. They just wanted to send me home. I wasn't diagnosed until 2 weeks later.

If you've not had your period and have had an FET recently you'd think it's clear you're pregnant. I would say because your HCG is so low and the fluctuations are minimal that's why the doctors aren't worried, even so of course you want to know.

If they do diagnose you with an ectopic because your hcg is very low they will very likely tell you to do expectant management where you take no meds and as the embryo doesnt develop your hcg drops. But yeah it is a waiting game.

It might be a case that your hcg keeps dropping then your next period will also be your miscarriage bleed. I had this when I had a chemical pregnancy. I'll be honest I was very sad but physically the bleeding was heavy but there was no pain.

I had such a bad experience with the health care service I lost a lot of trust in it, they were not clear on so many things that I was constantly online trying to find out when will my ectopic would end. That's why a year later I still message in forums.

[Lys90]

I appreciate you responding on this forum so much. It’s such a relief to have the perspective of someone who knows about XU. It’s so confusing and like you say the healthcare system doesn’t really care or know about women’s issues. Even with IVF I feel like so much is left to be desired and you really need to be vigilant and to be your own advocate the moment you are non-standard.

I know they probably find me a bit hysterical, but I have had bad OHSS twice (hence frozen transfers), so I know exactly where my ovaries are and that is where I feel a twinge.

Expectant management is fine for me for now if levels are going down I guess, but I really want it closely monitored.

[ChaoticBlues]

I totally get it. Until you are diagnosed and there’s a course of action, you are in limbo. Also I’m sure you want them to recognise your pregnancy. Someone who’s been trying and then who makes a big step with ivf, recognising you are pregnant is so important. It definitely sounds like you are. As you says doctors can be really stupid.

I’m sorry to hear you had bad OHSS and it’s really good that you don’t do a fresh transfer. I did mild ivf so OHSS is quite rare but the doctor only accessed one ovary, left eggs behind so I had OHSS symptoms. My second ivf I had a better doctor accessed both ovaries, no OHSS but 5 days later did a transfer and that was my ectopic.

It was a really traumatic experience, left in pain for 12 weeks, health care system so not good. I did my research and found that the womb is quite a hostile environment with fluid after an egg collection and you are more likely to have an ectopic, so since then I’ve only done frozen.

Expectant management they should monitor you at least once a week. That’s what happened me, my HCG was nearly 5,000 when I was diagnosed, then had the mxt injection end of December, then early March my HCG was 0. So long…. In your situation you shouldn’t have to go through a long drawn out experience.

[Lys90]

That sounds absolutely horrendous. So many months of pain and uncertainty. It must have been so traumatic and my heart bleeds for you, I’m so sorry you had to go through that. It is hard to keep positive when there are so many hurdles on the road, isn’t it?

As far as I understand from reading, around 5000 hcg is threshold some places for mtx versus surgery, and over 3000 HCG may require more than one dose. I will request it before I reach 3000 I think, confirmed XU or not. Or maybe just tube removal, as I am doing IVF anyway.

My last OHSS was September, waited until I got my period and then started tracking ovulation to do FET in natural cycle (October). Technically I had two eggs in play this month, the natural ovulation and the 5 day blastocyst. I can probably not do fresh IVF, both times I have done IVF it has resulted in a bunch of free fluid in my abdomen and egg sacks the size of 30mm (golf balls). So I find your reading about the fluid and XU really interesting. The first time I got OHSS the doctors didn’t believe me at first, said it doesn’t really happen with a lower AMH…


I find it surprising they only accessed one of your ovaries though. My treatments have been in two different clinics. One they retrieval took 10 mins and it felt like they were vacuuming me, it was rough. The other they spent around 50 mins and they were so thorough and careful. Flushed each egg sack three times to make sure they got absolutely everything. They did both ovaries, but they left the immature/smaller eggs.

With IVF too they don’t always consider your individual needs. This last round I asked for prednisone, and they also gave me a blood thinner and extra progesterone (shots and vaginal pills). Not sure if that is what made a difference but I will do that next time too. I don’t think they would have given me the option at all if I didn’t bring it up first. Not until several more failed tries at least.

I wish there was more research on these things.

[ChaoticBlues]

I agree. I also wish doctors were more clear and informative.

If you’ve had a few failed FETs then the clinic often asks you to get a blood test to see if you have clotting issues that would prevent implantation. If it’s found that you have issues or if you just want to without testing that’s when they offer the Clexane, predisalone, Lubion and aspirin. I tested negative but I still went ahead one cycle and the Clexane I had 5 inch purple bruises from one injection. So wasn’t for me. It’s something you can insist on. The other thing they normally offer is PGT testing after failed attempts.

I’m with a clinic that has several doctors, some doctors aren’t very good and then others are, I didn’t realise that only certain doctors knew how to access both ovaries, one has a fibroid near it. But you’d think seeing my scans they would have put the right doctor with my egg collection.

I have a phone app tomorrow with the lead doctor of the clinic who did my recent egg collection, so will talk to him about my next FET, I will probably just ask for Lubion which are progesterone injections. This doctor emptied every follicle sac. So he’s pretty good.

I don’t think you need to worry about your HCG getting to 3000. It’s pattern at the minute suggests it will stay low. Mine was 7900 at 5 weeks dropped to 1700 then up to 4600. So if fluctuations are big that’s where it’s more of a worry. It’s a weird time as initially all you want is your HCG rising and then when there’s a problem all you want is your HCG to decrease because it means physically you can be healthy again. It’s a tough time.

[Lys90]

HCG is still rising, 500 yesterday (from 104 three days ago). Today my lines were even stronger so I am guessing higher today. Had some spotting and a back ache last night, that was a first. What a roller coaster. Going to probably test HCG once more this week then go in for early ultrasound at my clinic next week if HCG reaches above 2000. As I understand it that is the earliest they have hope of finding the fluid sack.

[Lys90]

How did your appointment go?

[ChaoticBlues]

Hey,

Well I’m guessing the doctors now had to admit you’re pregnant which was so obvious. Back ache and spotting, those symptoms could be so many different things. I feel like there’s a huge mystery with early pregnancy, lot of unknowns, doctors are never able to give a proper reason for things. I was like 5 and a half weeks, it felt like trapped wind, in my side, I was like oh great it’s probably gas a typical pregnancy symptom, but then it got bad I spotted but painfully that’s when I knew something wasn’t right. I hope you do get some answers. The Early pregnancy unit is probably where your GP will send you at your local hospital, they will look after you until you are classed as medically well.

My appointment went ok. I’m now about to do a FET end of the month with my one and only blastocyst from my recent egg collection. I had one ectopic and one chemical prior, so I go into it very much like anything can happen.

HCG is still rising, 500 yesterday (from 104 three days ago). Today my lines were even stronger so I am guessing higher today. Had some spotting and a back ache last night, that was a first. What a roller coaster. Going to probably test HCG once more this week then go in for early ultrasound at my clinic next week if HCG reaches above 2000. As I understand it that is the earliest they have hope of finding the fluid sack.

[Lys90]

I hope it works for you. I can see what you are saying going in with no expectations. I did that this round. This is also my second transfer. After so long with only negative tests I was just going through the motions of IVF, trying to protect myself from the diappointment. So I get it, there are no guarantees. It is still a lottery ticket though, and worth celebrating. I try to remember the numbers. 30% ish chance of pregnancy each transfer. Then at positive test, 75% ish chance it sticks.

In one way I guess I am happy just to be a the point of two lines. I’m really open about IVF (and this pregnancy too), and it’s crazy how many people have stories you never know about until you tell them yours. Some of those stories are of so many losses - and then suddenly it works. Someone I know had 4 MCs at around 10 weeks in one year. They are now in the third trimester. So I guess I am hopeful it WILL work at some point, it’s more a matter of how long it takes and to keep trying to work the odds. I have cut out alcohol completely, take so many supplements, yoga, sleep minimum 8 hours, track ovulation like a crazy person etc just to maybe increase our chances a little bit. I know it’s neurotic but I can’t help but feel I need those margins. I don’t want to fail for lack of trying.

[Lys90]

My clinic told me I could come in for an ultrasound today. They both found signs of a sack in my uterus as well as fluid on my left ovary. At first they said it could be water cyst left over from my ovulation, but it was confirmed by ultrasound that my ovulation was on the right side in my last cycle. They said I may have ovulated twice, but it could also be I have a pseudosack they found in my uterus, or I could have a heterotopic pregnancy (one on the ovary and one in the uterus). Either way two doctors looked at it, they were really unsure, so they referred me to the hospital for close follow-up as they suspect ectopic now.

[ChaoticBlues]

That’s something that they scanned you. So they think the embryo may have split one implanted in in your ovary and one has implanted in your womb? That’s so rare. Ovary ectopic pregnancies are very rare, they mostly take place in the Fallopian tube. I said before how early pregnancy is such a mystery, they rarely have concrete information.

If there’s two, couldn’t that mean one is ectopic and one could be ok? If that’s the case could that mean they may remove the ovary with the fetus? They can’t give the methotrexate injection. Also if your HCG is fluctuating this would explain why. Like if you are now in the thousands with your HCG. Have they given you a date? I’d feel so conflicted if I was you like, possible hope and but also thinking worst case scenario that it might be overall ectopic.

The doctors sound bewildered. When I was in the hospital, after begging for a scan, the doctor said it look like my womb was full of blood, the next day the proper consultant looked and said no what they thought was blood was just my fibroids. She scanned and never found the fetus or sac, but because of my HCG going up and down, plus the pain in my side said it’s in an unknown location. Part of me regrets not having the tube removed to see if the baby was in the tube. Also the long drawn out 12 weeks of bleeding and extreme pain, I have a little PTSD, I wrote a poem about it. That bad. I was inspired. Maybe the surgery I would have avoided that.

IVF is full on. It’s been quite the experience. I had 4 IUIs, 3 egg collections, 5 transfers, but 2 out of the transfers I got pregnant. What you said is how I see it too, 33% chance of pregnancy with a poor quality embryo (that’s what I have stored 6CC) around 60% for a excellent embryo and the 70% chance it sticks, up to 90% if you see a heart beat.

I have hope for sure. The doc this week said I clearly can get pregnant, many women he’s about to talk to after me never have, he said one woman is 47 she had a 1% chance, had one egg and it worked. Amazing.

[ChaoticBlues]

Left ovary,…was the left side you felt pain?

[Lys90]

It is the left ovary where I have had pain, yes. So clearly my pain is from whatever is there… Could be a pregnancy, could be an ovarian cyst left over from ovulation. I saw it on ultrasound, it looked huge - much bigger than whatever they saw in my uterus (a pregnancy or a pseudo-sack from an ectopic).

The thing is I know for a fact I ovulated with an egg on the right side last cycle, not the left. I had 4 ultrasounds before egg transfer because we were doing it in natural cycle and they were trying to time the transfer (my cycle was late). So if the sack they found on my left ovary is left over from ovulation it means I ovulated twice in addition to the embryo they transferred. Technically therefore I have had three chances of pregnancy this round, and heterotopic starts to sound less unlikely to me. I don’t think they suspect the embryo split, I think if it is heterotopic they are thinking simultaneous natural conception and IVF-conception. I have read such pregnancies have a 60% live birth rate for the intra-uterine pregnancy. Often both miscarry, but not always at the same time. Either way they can remove one and leave the other.

The clinic very clearly told me chances of this being a viable pregnancy is very slim due to the hcg tests, but not zero. In any case I have been spotting for three days now and have had intermittent cramping and lower back pain so I’m thinking imminent miscarriage is pretty likely. I do hope I find out where the pregnancy was if I miscarry now though. If I get pregnant again the uncertainty is going to be really hard. Do you have strategies for how you will handle your next two week wait? Will you do hcg tracking, or just wait for first ultrasound for example? I think in later pregnancies I would be pretty insistent on week 6 scans, I don’t care how much it costs if it can detect an ectopic before it bursts. The stories of that are horrendous.

Have you considered removing the fibroids? I had laprascopy earlier this year and removed one. They never know if it interfers with pregnancy or not but I was doing exploratory laprascopy to possibly diagnose endometriosis and they found a fibroid and some adhesions while they were there. They also did the dye thing in my tubes so at least then they seemed to be open and fine. The surgeon said everything looked great for pregnancy. Endometriosis was indeterminate. The deciding factor for me to do the laprascopy was I read endometriosis increases the risk of miscarriage from 25% to 35% or something like that, and I always assumed I had it. I didn’t think of the fact that laprascopic surgery itself increases the risk of ectopic pregnancies. Damn impossible choices. In my next life I will come back as a women’s health researcher or something like that, it’s needed.

[ChaoticBlues]

I do know a cyst can cause severe pain. When I had pain in my side, I was like it could be wind, could be a fibroid, could be ectopic, could be a cyst, could be anything. Sometimes you don't get answers, especially in early pregnancy. I hope you do get clear answers, to understand and digest it all.

How are you feeling emotionally? Its a hard time the unknown. My losses were so different. My ectopic I had hcg in my for 4 months so it was a drawn out pregnancy loss hard to move on and my body painfully contracted every 2 weeks. But then my chemical was quick and over in a period. Relieved it wasn't worst but sad to lose the baby.

I really think you should try and get an appointment at the local hospital at the early pregnancy unit. If you do, not only will they help you through it medically, because ectopic is deemed as serious, the moment you get pregnant again, you call them, say you are self referring and they will scan you around 5 and half weeks pregnant whether you're having symptoms or not, I went for my chemical pregnancy.

Yeah I've heard not very nice stories of ectopic pregnancies, when my hcg was really high I was worried it would burst. Stopped exercising.

So most of my fibroids are in the wall and outside my womb so don't really cause an issue, but one is inside my womb, I had a hysteroscopy a camera inside I saw it. The doc said he wouldn't remove it as scar tissue may make implantation not happen. However now the fertility doc is saying with eostrogen pills from medicated FETs could make it bigger so should look into it. I will after this FET if it fails. See if I can remove it via a hysteroscopic resection. The doc said maybe my fibroid pushed the embryo in my tube but theres sooo many other reasons it could have happened. I too had a hycosy where they put dye in you and it was fine.

I am one of those women I start hcg tracking very early. I knew I was pregnant at 5 or 6 days past transfer the first time and the second time my hcg line never went away because I had triggered because my egg got big even though it was a medicated cycle.

Really hope you get an appointment soon. Hope they give you definitive answers.

[ChaoticBlues]

***body painfully contracted every 2 days not 2 weeks for 12 weeks

[Lys90]

Emotionally I am finding this whole thing really traumatizing. Doesn’t make me feel better that most of the doctors I have talked to so far don’t seem to have a clue what is going on. After my latest hcg test, my GP told me this morning everything is fine with my pregnancy and please just retake hcg next week… The fertility clinic on the other hand was concerned and told me to come in.

It doesn’t help that this is on top of all the other weird and confusing things on this journey to try to conceive. It feels like everything that can go wrong keeps going wrong you know? And no one knows why. Why am I not conceiving? Why did I get OHSS? Why is this pregnancy happening this way? I’m a worrier so I read about everything that can go wrong and everyone keeps telling me it won’t happen, but then it does. It was me that pushed for a second and third hcg-test. My clinic said “see you on week 7 ultrasound!” After the first hcg test and would have left it at that. When hcg dropped in the second test, they said “stop all your pregnancy support, you will miscarry sometime in the next week or so”. But I pushed for the third test to make sure hcg kept going down. I hate being proven right, but I’m taking no chances with this. I tried to get a referral to the specialized clinic this past weekend but they said then that despite my pain and hcg-levels they did not suspect ectopic. I mean I hope they were right and that it’s just a cyst but I’m not going to take anyone’s word for it until they know for sure.

Today my (fertility) clinic referred me to the specialized unit at the hospital, yes. They told me I could come today but I figured if the scan today at the clinic was inconclusive it would be better to wait until tomorrow and hope to see more. So I have an appointment when they open tomorrow morning. I’m not in the UK so things work a little differently, there are no early pregnancy units, just “women and children” but this is the national “expert” hospital, and they are also the ones who will do the surgery if I need it so really I could be in no better place. At least in this country. I don’t expect they will have any more answers as I am still only 5+4 tomorrow, but we’ll see.

Tomorrow I will absolutely not accept mtx if they cannot rule out intrauterine pregnancy. If they find an ectopic I am seriously tempted to just ask them to take out the tube. The thought of what you describe, weeks of hcg declines, spotting, cramping, waiting to try again etc - sounds so hellish. If it is an ovarian ectopic that is a different matter. It would mean halving my egg reserve, it would really be a blow. It will probably be expectant management though. I am not too bothered about my ovary pain. It is what started to get me concerned about an ectopic, but the pain itself is intermittent and manageable. It also hasn’t really gotten worse over time so I guess that’s good.

I just hope I get some answers soon so I know what I am dealing with and I can move forward. My partner is really optimistic about the future, he always is, but I can’t think further than what is going on right now.

[Lys90]

I am so confused. I went in to the specialized unit at the hospital and they have not been able to rule out an ectopic pregnancy, but they did see two (!) sacks with a white dot in them in my uterus so i don’t really understand if what they are now considering is heterotopic triplets, or what they think those things in my uterus are… They are not thinking ectopic in my ovary, they said I have a cyst on each side that are left over from ovulation - so likely I ovulated on both sides, but the bigger cyst is on the left so that is where thet think it is possible a pregnancy may have developed in the tube. I guess it’s possible since ovulation was induced with Ovitrelle.

What they are looking for is a possible ectopic in my left tube, but so far it is inconclusive. If I have an ectopic it needs to grow so they can diagnose.

In any case I am still cramping and bleeding a little, but other than a tiny bit of blood in my cervix on the ultrasouns it doesn’t look like I am currently miscarrying or that anything ruptured yet… They told me to come back Monday to take new scans and to compare. I’m not sure what to do with myself in the meantime, there is so much contrasting information and it all sounds so unlikely I just don’t… Yeah so confused.