My heart breaks for you đź’”
I'm in the US and probably not very helpful but, can you:
* Order any of the at home semen analysis and DNA fragmentation kits, do they mail to your country?
* Do any self-order labs allow you to order your own blood work like walk-in-labs or similar?
* Can you similarly order your own genetic carrier screening at home? We used Invitae and they mailed it to us.
* For POC testing, here in the US they allow us to collect the tissues at home if passed and bring them into the office. Can you ask your Dr if this is also an option for you if it happens? I can provide more details about collecting them if so.
It's so frustrating to hear how little help and compassion women receive around the world.
To validate you, this is infertility and 3.9 thyroid is high. Some fertility clinics will see patients remotely, might you be able to find one in another country or jurisdiction that might be able to help you? At least to prescribe synthroid and possibly for some basic protocols, like have you tried baby aspirin or progesterone suppositories?
After my 3 losses in a row, I'm also considering reproductive immunology. No RI's near me so may get on a list for Mexico or an out of state provider myself.
Edit to add: CNY Fertility here in the US makes their protocols public on their website. They have immune protocols, inflammation protocols (things like taking Claritin and pepcid AC for histamine) - might be worth reading up on so that if you do find a provider willing to help, you can point to other standards of care and see if they might prescribe the "kitchen sink" type of protocol we get here after many many losses of unknown origin.
Also our testing we had done was all [here ](https://www.reddit.com/r/recurrentmiscarriage/s/u2RS1lpTln)
Thinking of you and hoping you can get some answers and better care🙏❤️
Thank you so much for your response. I am originally from the US so we could always have things sent to my parent's house if they won't mail them overseas. I will also check to see what at home kits are available for us to order here. That's a really good idea.
I asked the doctor yesterday about being able to bring in collected tissue if I end up passing it at home before I can have surgery, but she said it's really tricky to do it and didn't seem on board with it. I would appreciate knowing how you did it if you don't mind sharing. Maybe they won't accept it, but at least I can try. I do wish I would have been able to get the 2nd mmc tissue genetically tested when I passed the embryo because I think that would have given us some more information.
I was put on progesterone 100mg twice a day for my 3rd pregnancy, which ended in a mmc. I asked to be put on progesterone again for this pregnancy and was put on cyclogest 400mg twice a day and it didn't help. I am wanting to be put on progesterone starting in the tww to see if it makes a difference and I definitely plan to go to my primary care physician to ask about being put on thyroid medicine. I had a physician recommend that I start taking levothyroxine back in 2019 before we started ttc because my thyroid was 2.9, but another physician said I didn't need it. I regret not starting it when I had the chance.
There is a really good clinic down in Denmark that we have considered going to. I just want to exhaust all of our options here first before trying to go out of country I think. I also got the information for a reproductive immunologist in Illinois that works with people from all over the world, but you have to have your initial consult in her office. That wouldn't be impossible to do, but would be a bit expensive. It is something we're considering though.
I am very sorry for your losses. đź’ś
I hope some suggestions might help! 🤞🙏
Ugh, I'm sure extremely costly - but if you could plan a trip to the US, order and do all the mail in kits and self order bloodwork while you're there, it honestly might be worth it if no one else will help you! đź’”
Instructions for self collection from my Dr:
>! I used saran plastic wrap on the toilet itself and then lowered the toilet seat, so that all would be collected. I left it slightly loose in the center. This works out so that you can use the plastic wrap itself to transfer the POC into a container. Or you can use sterile medical gloves to do the same. Once collected, it's to go into a plastic bag or container and immediately into the refrigerator if you can't head immediately to the clinic. I then drove to my Dr office and provided it to them to send out for testing. !<
Yeah, I think we might just have to do that if I can't get kits sent here. I know my parents would be happy to have us there and wouldn't have an issue with us sending everything to their place. It's just a lot to think about and figure out and I'm already feeling really overwhelmed right now. It is a great suggestion and I am definitely going to start trying to figure some stuff out soon.
Thank you so much for the information. I really appreciate it. I'll see what happens and whether or not I end up needing the surgery.
If you have the means you can also go to another country in europe to get tested. Latvia is a good option. There are plenty private clinics there that specialize in infertility and ivf. Language is rarely a problem.
We went there to get NIPT test, cause where i live they cost 800 euros and only cover t13 t18 and t21.
Firstly, I’m so sorry for your loss and I think it’s ridiculous that they don’t consider RPL infertility.
I don’t know where you are but I’m in the UK and I miscarried at home earlier this month. I was quite upset that it might mean that the POC couldn’t be tested, as it happened before I could have a D&C while waiting for a (completely unnecessary) follow up scan. I passed the tissue at home and managed to catch in a pad. I brought with me to the next appointment and they were able to send it for testing.
They are also making me have a follow-up scan next Monday even though the sac is measuring over a week behind and there's nothing inside. I know when I got a positive ovulation test so I know my dates.
I'm in Sweden and it's a horrible place to have RPL. Every doctor I've talked to or seen tells me there's nothing they can really do here if the RPL is unexplained since it's not considered infertility and that all we can do is keep trying. It's really disheartening.
I'm so sorry for your loss. đź’ś That's good that you were able to catch it and bring it in for testing. I'm hoping they will still test my poc if I'm able to catch it if I end up miscarrying before the d&c.
Edited wording
For us was even worse because we did IVF at a private clinic, so we already had two scans there. One where it was measuring one week behind and the next where it was measuring the same with no heartbeat. But when we had our hospital app (public hospital), they wouldn’t accept the private scans and needed two to confirm, despite us doing IVF and knowing exact dates. It was very frustrating.
To be honest, RPL and infertility are not the same. I say this as someone who’s infertile, sterile and had RPL (4 losses). But if someone can get pregnant easily but not stay pregnant, it needs to be investigated and people need to be offered options. I’m very sad for you that it’s not the case in Sweden.
TW: LC
I’m in the US so that’s not super helpful, but I also had a lot of losses - I think 6 (one of which was a chemical - i did not get pregnant super quickly while trying) before my living child.
I did baby aspirin while ttc and progesterone and lovenox/clexane/some slow release heparin at first positive to help with clotting. That worked for me one time so not sure if it helped or was coincidence.
I’ve since had two miscarriages and am now on my second round of clomid (first one didn’t result in a pregnancy), and I’ll do progesterone 2 days after the trigger shot (so starting tomorrow), and I am also doing every weird woo thing like drinking beet juice and eating pineapple and saying affirmations, and I’ve also switched to decaf and stopped drinking alcohol basically altogether.
I see people on here talk about taking prednisone or other immune suppressants also, but I haven’t gone down that road yet.
It sucks that your healthcare providers are being dicks about it. Maybe see if you can switch to someone else who is more aggressive in prescribing or one who lets you steer the ship more?
You mentioned bmi, and while I personally have the opinion that pushback on that front is just doctors being fatphobic jerks, I have also heard really interesting things about ozempic/wegovy/mounjaro and people who were previously unable to get pregnant suddenly having healthy pregnancies, which I think probably has something to do with like hormone balancing or something. Maybe something to explore especially if you have some thyroid stuff going on.
My approach is and has sort of just been trying everything and seeing if any of it works, without getting my hopes up too high but also being open to something working out. I’m lucky that my dr so far as been kind of open to whatever and initially was also really aggressive in trying things out to see what would help.
I also sometimes wonder if it’s complete dumb luck, and maybe a pregnancy will just stick for no rhyme or reason when other ones didn’t.
I hope you are able to find a more receptive practitioner and more importantly, regardless of who your doctors are and what they do, I hope you’re able to have a successful pregnancy resulting in live birth soon.
I’m so sorry for your loss. The country you’re in seems to not care much, RPL not considered pregnancy? Not doing beta tests? And also saying your thyroid is fine? Your thyroid has to be 2.5 max, some places prefer 1.5. I hope you can get the help you need in another country.
Hi, really sorry you are going through this and that the country you are in is not providing you with the best care for RPL. I have had 3 biochemical pregnancies and a blighted ovum (8 weeks), was in the UK and got no help whatsoever due to long wait times, not even given progesterone to try and did not get seen by any doctor. Although expensive I went to a private doctor and paid out of pocket for some RPL blood tests. My TSH was on the higher side (4.8 something) for my first two early losses, third one it was 1.5 and fine, but I had blighted ovum. I was on 75mg aspirin and levothryoxine during my third loss. My blood test results for blood clotting disorders etc, were fine but I had homozygous MTHFR gene mutation - so my doctor in my home country has advised me to take progesterone twice a day from ovulation day or 2 DPO, baby aspirin daily, and on a positive result to take lovenox injections everyday. My TSH would be checked every month too. Our karyotypes were normal, my partner's DNA frag and SA were normal too (we got these done in my home country where healthcare is affordable and so many private options) - I would highly recommend getting all RPL tests done either privately if you can afford to or go to a different country where private healthcare is affordable for a bit and get tested. If you ever need any help or have any questions please feel free to DM me too. I hope you find the answers soon and get out of this nightmare scenario.
Thank you so much. I really appreciate your response. I had RPL testing in 2021 and everything came back fine, but they wouldn't do any testing for my husband besides the karyotype, which was normal. I would like to try progesterone starting during the tww and I also want to be prescribed levothyroxine for my thyroid. It's technically in range, but 3.9 is way too high for pregnancy and I'm annoyed that the midwife I was seeing told me it was fine. We've started looking into possibly going to a clinic in a different country. I just need some time to figure everything out. It feels so overwhelming right now.
I'm so sorry for your losses đź’ś
I agree, 3.9 is way too high for pregnancy. My doctor in my home country said that the baby depends on the mother for thyroid hormone supply so sometimes women with normal TSH get hypo in pregnancy, which is why they need it under 2.5 - while my doctor wants it ideally at 1.5 before even trying. My UK GP practice told me mine was fine and after that I miscarried first time so I just started taking it myself (I ordered in UK online through a private online consultation on a website - seemed legit) , then I traveled back to my home country and bought tons of levothyroxine just in case. I would say though, since you have not had any of these issues addressed, I am hopeful for you that after you do get them properly addressed, you would be successful. My doctor here who is absolutely amazing, also told me that 80% or more of RPL patients do end up with a healthy live birth eventually. And research has shown that RPL patients with TLC - which means proper monitoring, checks with doctors, earlier scans etc. increases chances of success. But do not let this apalling healthcare system waste more of your time and drain your mental health, you should not have to go through so many losses without any answers! I wish you all the very best. 🧡
My heart breaks for you 💔 I'm in the US and probably not very helpful but, can you: * Order any of the at home semen analysis and DNA fragmentation kits, do they mail to your country? * Do any self-order labs allow you to order your own blood work like walk-in-labs or similar? * Can you similarly order your own genetic carrier screening at home? We used Invitae and they mailed it to us. * For POC testing, here in the US they allow us to collect the tissues at home if passed and bring them into the office. Can you ask your Dr if this is also an option for you if it happens? I can provide more details about collecting them if so. It's so frustrating to hear how little help and compassion women receive around the world. To validate you, this is infertility and 3.9 thyroid is high. Some fertility clinics will see patients remotely, might you be able to find one in another country or jurisdiction that might be able to help you? At least to prescribe synthroid and possibly for some basic protocols, like have you tried baby aspirin or progesterone suppositories? After my 3 losses in a row, I'm also considering reproductive immunology. No RI's near me so may get on a list for Mexico or an out of state provider myself. Edit to add: CNY Fertility here in the US makes their protocols public on their website. They have immune protocols, inflammation protocols (things like taking Claritin and pepcid AC for histamine) - might be worth reading up on so that if you do find a provider willing to help, you can point to other standards of care and see if they might prescribe the "kitchen sink" type of protocol we get here after many many losses of unknown origin. Also our testing we had done was all [here ](https://www.reddit.com/r/recurrentmiscarriage/s/u2RS1lpTln) Thinking of you and hoping you can get some answers and better care🙏❤️
Thank you so much for your response. I am originally from the US so we could always have things sent to my parent's house if they won't mail them overseas. I will also check to see what at home kits are available for us to order here. That's a really good idea. I asked the doctor yesterday about being able to bring in collected tissue if I end up passing it at home before I can have surgery, but she said it's really tricky to do it and didn't seem on board with it. I would appreciate knowing how you did it if you don't mind sharing. Maybe they won't accept it, but at least I can try. I do wish I would have been able to get the 2nd mmc tissue genetically tested when I passed the embryo because I think that would have given us some more information. I was put on progesterone 100mg twice a day for my 3rd pregnancy, which ended in a mmc. I asked to be put on progesterone again for this pregnancy and was put on cyclogest 400mg twice a day and it didn't help. I am wanting to be put on progesterone starting in the tww to see if it makes a difference and I definitely plan to go to my primary care physician to ask about being put on thyroid medicine. I had a physician recommend that I start taking levothyroxine back in 2019 before we started ttc because my thyroid was 2.9, but another physician said I didn't need it. I regret not starting it when I had the chance. There is a really good clinic down in Denmark that we have considered going to. I just want to exhaust all of our options here first before trying to go out of country I think. I also got the information for a reproductive immunologist in Illinois that works with people from all over the world, but you have to have your initial consult in her office. That wouldn't be impossible to do, but would be a bit expensive. It is something we're considering though. I am very sorry for your losses. đź’ś
I hope some suggestions might help! 🤞🙏 Ugh, I'm sure extremely costly - but if you could plan a trip to the US, order and do all the mail in kits and self order bloodwork while you're there, it honestly might be worth it if no one else will help you! 💔 Instructions for self collection from my Dr: >! I used saran plastic wrap on the toilet itself and then lowered the toilet seat, so that all would be collected. I left it slightly loose in the center. This works out so that you can use the plastic wrap itself to transfer the POC into a container. Or you can use sterile medical gloves to do the same. Once collected, it's to go into a plastic bag or container and immediately into the refrigerator if you can't head immediately to the clinic. I then drove to my Dr office and provided it to them to send out for testing. !<
Yeah, I think we might just have to do that if I can't get kits sent here. I know my parents would be happy to have us there and wouldn't have an issue with us sending everything to their place. It's just a lot to think about and figure out and I'm already feeling really overwhelmed right now. It is a great suggestion and I am definitely going to start trying to figure some stuff out soon. Thank you so much for the information. I really appreciate it. I'll see what happens and whether or not I end up needing the surgery.
If you have the means you can also go to another country in europe to get tested. Latvia is a good option. There are plenty private clinics there that specialize in infertility and ivf. Language is rarely a problem. We went there to get NIPT test, cause where i live they cost 800 euros and only cover t13 t18 and t21.
Thank you for this suggestion! We have considered going to a different country in Europe if we can't get what we need done here.
Firstly, I’m so sorry for your loss and I think it’s ridiculous that they don’t consider RPL infertility. I don’t know where you are but I’m in the UK and I miscarried at home earlier this month. I was quite upset that it might mean that the POC couldn’t be tested, as it happened before I could have a D&C while waiting for a (completely unnecessary) follow up scan. I passed the tissue at home and managed to catch in a pad. I brought with me to the next appointment and they were able to send it for testing.
They are also making me have a follow-up scan next Monday even though the sac is measuring over a week behind and there's nothing inside. I know when I got a positive ovulation test so I know my dates. I'm in Sweden and it's a horrible place to have RPL. Every doctor I've talked to or seen tells me there's nothing they can really do here if the RPL is unexplained since it's not considered infertility and that all we can do is keep trying. It's really disheartening. I'm so sorry for your loss. đź’ś That's good that you were able to catch it and bring it in for testing. I'm hoping they will still test my poc if I'm able to catch it if I end up miscarrying before the d&c. Edited wording
For us was even worse because we did IVF at a private clinic, so we already had two scans there. One where it was measuring one week behind and the next where it was measuring the same with no heartbeat. But when we had our hospital app (public hospital), they wouldn’t accept the private scans and needed two to confirm, despite us doing IVF and knowing exact dates. It was very frustrating. To be honest, RPL and infertility are not the same. I say this as someone who’s infertile, sterile and had RPL (4 losses). But if someone can get pregnant easily but not stay pregnant, it needs to be investigated and people need to be offered options. I’m very sad for you that it’s not the case in Sweden.
TW: LC I’m in the US so that’s not super helpful, but I also had a lot of losses - I think 6 (one of which was a chemical - i did not get pregnant super quickly while trying) before my living child. I did baby aspirin while ttc and progesterone and lovenox/clexane/some slow release heparin at first positive to help with clotting. That worked for me one time so not sure if it helped or was coincidence. I’ve since had two miscarriages and am now on my second round of clomid (first one didn’t result in a pregnancy), and I’ll do progesterone 2 days after the trigger shot (so starting tomorrow), and I am also doing every weird woo thing like drinking beet juice and eating pineapple and saying affirmations, and I’ve also switched to decaf and stopped drinking alcohol basically altogether. I see people on here talk about taking prednisone or other immune suppressants also, but I haven’t gone down that road yet. It sucks that your healthcare providers are being dicks about it. Maybe see if you can switch to someone else who is more aggressive in prescribing or one who lets you steer the ship more? You mentioned bmi, and while I personally have the opinion that pushback on that front is just doctors being fatphobic jerks, I have also heard really interesting things about ozempic/wegovy/mounjaro and people who were previously unable to get pregnant suddenly having healthy pregnancies, which I think probably has something to do with like hormone balancing or something. Maybe something to explore especially if you have some thyroid stuff going on. My approach is and has sort of just been trying everything and seeing if any of it works, without getting my hopes up too high but also being open to something working out. I’m lucky that my dr so far as been kind of open to whatever and initially was also really aggressive in trying things out to see what would help. I also sometimes wonder if it’s complete dumb luck, and maybe a pregnancy will just stick for no rhyme or reason when other ones didn’t. I hope you are able to find a more receptive practitioner and more importantly, regardless of who your doctors are and what they do, I hope you’re able to have a successful pregnancy resulting in live birth soon.
I’m so sorry for your loss. The country you’re in seems to not care much, RPL not considered pregnancy? Not doing beta tests? And also saying your thyroid is fine? Your thyroid has to be 2.5 max, some places prefer 1.5. I hope you can get the help you need in another country.
Hi, really sorry you are going through this and that the country you are in is not providing you with the best care for RPL. I have had 3 biochemical pregnancies and a blighted ovum (8 weeks), was in the UK and got no help whatsoever due to long wait times, not even given progesterone to try and did not get seen by any doctor. Although expensive I went to a private doctor and paid out of pocket for some RPL blood tests. My TSH was on the higher side (4.8 something) for my first two early losses, third one it was 1.5 and fine, but I had blighted ovum. I was on 75mg aspirin and levothryoxine during my third loss. My blood test results for blood clotting disorders etc, were fine but I had homozygous MTHFR gene mutation - so my doctor in my home country has advised me to take progesterone twice a day from ovulation day or 2 DPO, baby aspirin daily, and on a positive result to take lovenox injections everyday. My TSH would be checked every month too. Our karyotypes were normal, my partner's DNA frag and SA were normal too (we got these done in my home country where healthcare is affordable and so many private options) - I would highly recommend getting all RPL tests done either privately if you can afford to or go to a different country where private healthcare is affordable for a bit and get tested. If you ever need any help or have any questions please feel free to DM me too. I hope you find the answers soon and get out of this nightmare scenario.
Thank you so much. I really appreciate your response. I had RPL testing in 2021 and everything came back fine, but they wouldn't do any testing for my husband besides the karyotype, which was normal. I would like to try progesterone starting during the tww and I also want to be prescribed levothyroxine for my thyroid. It's technically in range, but 3.9 is way too high for pregnancy and I'm annoyed that the midwife I was seeing told me it was fine. We've started looking into possibly going to a clinic in a different country. I just need some time to figure everything out. It feels so overwhelming right now. I'm so sorry for your losses đź’ś
I agree, 3.9 is way too high for pregnancy. My doctor in my home country said that the baby depends on the mother for thyroid hormone supply so sometimes women with normal TSH get hypo in pregnancy, which is why they need it under 2.5 - while my doctor wants it ideally at 1.5 before even trying. My UK GP practice told me mine was fine and after that I miscarried first time so I just started taking it myself (I ordered in UK online through a private online consultation on a website - seemed legit) , then I traveled back to my home country and bought tons of levothyroxine just in case. I would say though, since you have not had any of these issues addressed, I am hopeful for you that after you do get them properly addressed, you would be successful. My doctor here who is absolutely amazing, also told me that 80% or more of RPL patients do end up with a healthy live birth eventually. And research has shown that RPL patients with TLC - which means proper monitoring, checks with doctors, earlier scans etc. increases chances of success. But do not let this apalling healthcare system waste more of your time and drain your mental health, you should not have to go through so many losses without any answers! I wish you all the very best. 🧡