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Did I kill my baby by monitoring hcg too early?

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SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Hi, I am 30 yo, currently diagnosed with ectopic pregnancy and took 3 injections of methotrexate in upper arm this Sunday (50m or something =my weight). I cannot help but to think I should've waited and that my doctors failed me. I know no one is a doctor here, but your opinions would mean tje world to my over thinking brain.

In May, I had my period between 19 and 24. On may 31st I took an hcg injection as my doctor said it would better prepare my ovulating egg. I had sex this day. I then had another period between June 13 and 16. It started off brownish and had 1 or 2 heavy dark bleeding. It felt off, and I was feeling nauseous, so I took a home pregnancy test on June 18 and it came positive. I didn't believe it as I had a period, so I waited until June 24 and tested again. The cross on Clear Blue came back even more positive. I called my doctor and she said to do hcg test, then again in 48 hours. My hcg rate was 44 on June 24, then 49 on June 26. My doctor immediately said this is a failed pregnancy and advised I take a pill to speed up the process. I told her no ill wait for it to come down by itself. I lied as I wanted to see the levels again. I also saw another doctor who said I should wait, but I'll probably have a negative test by end of the week. On July 1st, my hcg was 160. I visited both doctors and one said i should take methotrexate ASAP, and the other said I should wait 2 days and test again. I visited a 3rd doctor who also said to take methotrexate but afterv2 days. I panicked, and didn't wait 2 days. I tested hcg again on July 2nd and the number was 210. 2 out of 3 doctors said I take methotrexate, which I did thus Sunday, July 3rd. All 3 doctors couldn't see any thing on vaginal ultra sound. 2 doctors said I should wait at least 6 months until I try again because of the side effects of methotrexate, while the ER nurse told me to wait at least a year.

All I can think of, is if I waited until my missed period in July to test instead of rushing to test after that weird period in june, they could've seen my baby in my uterus. They claimed that some women have their tubes rapture at even 600 hcg and they didn't want to take any chances. Did I do the right decision?

& why are all these doctors with +15 years experience having different opinions. Is this not science!

My hcg test is tomorrow and text online says I could also expect a rise tomorrow even on day 5 of methotrexate but 1 dictorr say it should decreased , and another said it should decrease by 3rd day. Guhhhh :"(

paulinavx_1
Posts: 20
Joined: Mon Nov 23, 2020 11:18 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by paulinavx_1 »

Dear Sarah. I'm really sorry for your loss. Ectopic pregnancy is terrible experience and I understand your concerns and doubts about your treatment. I'm not medically trained but looks like your doctors were confident that your pregnancy was likely ectopic based on hcg levels. Otherwise they wouldn't have suggested methotrexate. Postponing treatment could have been dangerous for you. Ectopic pregnancy can cause serious problems even when hcg levels are low. In my case I was being monitored for pregnancy of unknown location for around 2 weeks before my ectopic was found on the scan.
My hcg levels were low for the very beginning (less than 300) and plateaued/dropping so I knew that pregnancy was not viable and me and doctors hoped it could be self resolving. However, 4th scan showed pregnancy in the tube and signs of internal bleeding so I needed surgery. At that stage my hcg were below 200 and dropping, I felt physically ok and was completely unaware that I was bleeding internally (I was going to work as normal and went for hcg test by bus). Later on doctors told me that although I was stable, my condition could have got worse very quickly at any time and I had the surgery in time. So in my case low hcg didn't mean I was safe.
Please don't blame yourself for having life-saving treatment. You did everything you should to protect yourself and your health. Sending you lot of hugs. Take care!

SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Thank you so much for the reply, really appreciated. And I'm also so sorry for your loss, but I'm happy you're with us today. Thanks for sharing your story with me.

my hcg was rising, but it wasn't doubling, and they took that as the main factor to judge and my heart keeps on saying there was a viable pregnancy that I rushed into ending.

paulinavx_1
Posts: 20
Joined: Mon Nov 23, 2020 11:18 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by paulinavx_1 »

I understand your feelings. It was probably easier for me since I had surgery and pregnancy was found on ultrasound so there was physical evidence that it wasn't viable.
I'm not a doctor but I have biomedical background. I can tell you that serial hcg measurements are very accurate in distinguishing between viable and non viable pregnancies. Incorrectly raising hcg, especially when incorrect patterns are seen in few consecutive measurements, is very strong evidence of non-viable/failing pregnancy. I really believe based on hcg levels you mentioned in your first post, that unfortunately this pregnancy was not developing and you made right decision to start your treatment.

SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Pauline-thsnk you. Its really different when I hear it from someone who lived the experience. Idon't think anyone's experience is easier than the other and I'm sorry if my first reply made it I anyway sound like that. And your replies have been very helpful.

I'm going for an hcg test today and really hoping it's dropping. It's 5 day after injection today.

SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Uodate on hcg, 5 days post injection and its rising.

paulinavx_1
Posts: 20
Joined: Mon Nov 23, 2020 11:18 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by paulinavx_1 »

I'm really sorry that your hcg levels are still rising. It may take a while for treatment to start working. I hope your hcg will start dropping soon.

SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Thanks alot, I hope you're recovering well too, both physically and mentally. Xx

EPT Host 20
Posts: 3155
Joined: Thu May 31, 2012 10:58 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by EPT Host 20 »

Dear Sarah,
I am so sorry for your l loss,
If no pregnancy can be seen in the uterus, or there is a small gestation sac in the uterus without a yolk sac or embryo, the pregnancy will be medically labelled as a Pregnancy of Unknown Location or (PUL). It is important to understand that PUL is not a diagnosis; it is a label given until the final location of the pregnancy can be identified with certainty. In the event of a PUL, blood will be taken to measure serum progesterone and hCG and the hCG test repeated 48 hours later.
If scans are also inconclusive, doctors would carry out a series of blood tests to check hCG levels to see if the numbers are rising as expected. However, in isolation, hCG tests only provide a part of the picture - declining levels indicate that a pregnancy has ended and will be miscarried. It can also possibly indicate an ectopic pregnancy that is "self-resolving". Also hCG levels rising by less than 66% over 48 hours means it is likely (but not certain) that it is ectopic. If levels rise normally, they suggest the pregnancy is implanted in the uterus. You may see from this that hCG levels only indicate certain possibilities and are not in themselves a definitive guide. A positive identification of an implanted embryo on a scan is usually needed before a final diagnosis/certainty that the pregnancy has implanted in the uterus. Your levels were not rising as expected which infers that this pregnancy was sadly not viable.

Until the location of the pregnancy is known definitively or the serum hormone levels have decreased to below pregnancy levels, there is a risk of complications associated with an as yet undiagnosed ectopic pregnancy. For every 100 pregnancies labelled as a PUL about 10 will subsequently be found to be ectopic; and not all of these will need treatment.

With Methotrexate, you should wait until your hCG levels have fallen to below 5mIU/mL (your doctor will advise you when this is through blood tests) and then take a folic acid supplement for 12 weeks before you try to conceive. This is because the Methotrexate may have reduced the level of folate in your body which is needed to ensure a baby develops healthily. The Methotrexate is metabolised quickly but it can affect the quality of your cells, including those of your eggs and the quality of your blood for up to three months after it has been given. The medicine can also affect the way your liver works and so you need to give your body time to recover properly before a new pregnancy is considered. A shortage of folate could result in a greater chance of a baby having a neural tube defect such as hare lip, cleft palate, or even spina bifida or other NT defects. This is why the "wait" and then taking folic acid for 12 weeks before trying to conceive is so important.
I would ask why you have been advised to wait for 6 months as we do not have access to your medical notes to ensure there is no medical reason for this.
Some doctors also (mistakenly) think that because they have administered a second dose of Methotrexate that that they must also double the recovery time for the body. However, even in a second dose of Methotrexate, the dosage is still much lower than for treatment of other conditions and is still metabolised by the body very quickly.
Our medical advice is that, if you have had two injections, you should rely on your blood test results as an indicator of what is happening in your body and wait until your hCG levels have fallen to below 5mIU/mL in blood tests and then can restart taking vitamin/folic acid supplements. Also, in the first week it is important to avoid pain killers which fall into the NSAID group such as ibuprofen.

You are right in that the hCG level often rises on the day four blood test because the action of methotrexate is not instantaneous, so the cells will have continued to divide for two or three days after the injection was given, and some cells release more hCG when they start to disappear. Your doctors are looking to see a drop in your hCG value of at least 15% between days four and seven. If there has not been a 15% drop, this is when the doctors will consider a second dose of methotrexate or surgery.
A few days after the injection, it is usual to begin to bleed and this bleeding can last between a few days and up to 6 weeks.
Every 3-7 days, beta hCG levels will continue to be monitored to ensure that they are falling appropriately. Most only need one injection but in up to a quarter of cases a further injection may be required if serum hCG levels are not decreasing.
Methotrexate is at least as good as surgery in terms of subsequent successful pregnancies. This may be due to the fact that medical treatment is non-invasive, whereas surgery may cause some scarring around the tube.

Unfortunately medicine isn't an exact science. In the UK, doctors should follow NICE guidance which provides information on standardised care, but we still find variations between individual hospital policies and doctors own experiences.
I would write down any questions you have so you can ask your medical team for all the answers.

Can I end by saying that you did not kill your baby. Sadly with ectopic pregnancy, The pregnancy would not be viable and The growing embryo can certainly be life threatening to mum in cases of rupture.

Please be kind to yourself and allow time to grieve, to heal both physically and emotionally,
Sending much love,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards
**************************************************************************
During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.
If we have been able to help you, are you able to help us with a small donation or by volunteering or fundraising?
Further information is available at ectopic.org.uk
Email us: ept@ectopic.org.uk
We provide a call-back helpline service: 020 7733 2653
Take a look at our newsletters and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters
Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team
***************************************************************************

SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Dear Karen,

Thank you very, very much for this very thorough and elaborate explanation. It's for the fact that my numbers started rising normally ( almost doubling every 48 hours) but only after that first hcg test (the one with 44 then 49) that I keep on thinking why didnt my doctors disregard that first test and just waited. My main doctor was certain that my number was supposed to be much higher, but for my non medical background, my numbers were increasing normally. That's mainly why I kept thinking, if we only waited a bit. My husband and I are super unsure why this also happened, but I've seen some studies saying deformed sperm could do this (which is mostly all of my husband's sperm) and that hcg injection could do this too (which my doctor gave me on may 31st on my ovulation day).

On the duration of six months to not try for kids, they said there is one research that suggests to wait 3 months, and another with 6, and they want to take the safest option.

I am am Arab and I dont live in the UK (not even near it). I don't have the same access to information and supportive doctors like in the UK, which is why I'm joining this group; to know experiences and information from different places.

For example, my doctor is now telling me we cannot have sex until the number drop to below 5. Is this correct? (I'm travelling to see my husband next week if my health doesn't deteriorate, he works abroad and wasn't able to be around during this journy and it would be great for me if I'm able to be with him, physically, without worrying about my health). And can i jus install an IUD before my numbers drop as a contraception solution.

Thanks again, for everyone working in and supporting this group. Xx

EPT Host 20
Posts: 3155
Joined: Thu May 31, 2012 10:58 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by EPT Host 20 »

Dear Sarah,
In the UK We would suggest waiting taking folic acid for 3 months after your hCG levels return to pre pregnancy levels before trying to conceive but understand you wanting to air on the side of caution.
Your Dr 's are right in waiting before having intercourse again. Sadly, there is still the chance of rupture with low or declining hCG levels. We therefore advise avoiding anything that increases intra-abdominal pressure which in my view would includes sex. You should take things very easily in the early weeks of treatment and doctors often suggest allowing the body to recover and the first period to arrive before having penetrative sex again - which is around six weeks. There are of course other ways to be intimate.

Some couples, however, feel they want to have sex before this time and, ultimately, the decision about when to have penetrative sex again is a very personal one for you and your partner and should be based on when you both feel ready. I absolutely understand wanting to get back to normal on a number of levels - I did too after my ectopic pregnancy - although it is important to bear in mind that your physical recovery needs time especially during your medical treatment and to allow for your body to heal.

It does not matter that you are not in the UK, we will be here for support whenever you need us.

Sending much love,
Karen x

The Ectopic Pregnancy Trust
Registered Charity Number: 1071811
Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards
**************************************************************************
During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.
If we have been able to help you, are you able to help us with a small donation or by volunteering or fundraising?
Further information is available at ectopic.org.uk
Email us: ept@ectopic.org.uk
We provide a call-back helpline service: 020 7733 2653
Take a look at our newsletters and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters
Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team
***************************************************************************

SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Dear Karen,

Thank you so much for your ongoing support and very timely response. I'm so happy I found this groups via Instagram and so thankful for the Internet that reduces distance and makes access to information very easy.

Thanks, from the bottom of my heart.

Sarah

SarahHa
Posts: 21
Joined: Wed Jul 07, 2021 7:54 pm

Re: Did I kill my baby by monitoring hcg too early?

Post by SarahHa »

Hi to whoever is reading!
Wanted to write ab uodate here. I kept monitoring my hcg after taking thev2nd injection and it was steadily going down. It reached 21 on August 7th, but I had persistent pain on my right ovary side fir 5 days by then.
I took an appointment with the doctor, and after an MRI, CT scan, veginal and ultra sound and few other tests, they were able to see a mass. They didn't know what it was -if its a blood mass or ectopic pregnancy, so decided to do a laparoscopy to check. On August 11th, I went to OR with 2 tubes, got out with 1. Apparently, the pain was my right tube inflamed and about to rapture, oozing blood and they had to cut it out. I didn't know this could happen, but it did. After surgery I was super bloated and not going to bathroom, but thank god few days later my bowl movement is back to normal. I hope this helps someone to never ignore ur pain. Pain is telling you something is wrong. My gyno said due to my weight (54 kg), if my tube raptured I wouldn't have even reached the ER.

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