Recurrent Miscarriage Thread

[Justkeeptryin]

x

Lee, I've just read your post today. My blood tests all came back normal except the blood clotting one/antiphospholipid/sticky blood ..its known as so many things. They say it can be temporarily high so they like to repeat teh test. So they took more blood and I will get the results on 2nd Nov. They will treat it with low dose aspirin and also daily heparin injections to thin my blood. I also pushed for progesterone but the doctor/consultant isnt very keen on it and dosent agree that it works. Anyway in teh end he agreed to prescribe it if I wish only after I think about the risks. He said that it can masculinise a female feotus which I hadnt heard of. Anyway Im def. wanting to try that aswell to give myself the best chance possible.
I presented him with lots of reasons why I think my progesterone is low:
short luteal phase/all signs of oestrogen dominance such as PMS, heavy periods etc. Also whilst pregnant I had non stop bleeding which wasnt coming from my pregnant womb but appeared to have been my other 2nd womb trying to carry on as normal and have a period..so surely if my porgesterone was high enough this woouldnt have happened. Im a bit different in that the fact I have a double womb!
That sounds really hopeful that you are going to see dr. Shehata who treated that girl with the 18 miscarriages. I have my fingers crossed so tight for you. Good luck x

Tomorrow I am going to contact my fs regarding doing the second test on the lupus anticoagulant (or names sticky blood, etc). are you taking the heparin injections now? or are they only when you get pregnant.

Hi, I will only get the injections when pregnant so as soon as I get a BFP. Im actually hoping that my 2nd lost of results show that it was still high so that I will get the injections. I will also start taking low dose aspirin before BFP. I need my action place to be in place before falling pregant so hopefully it is just a case of phoning up to get heparin and progesterone.

 

[35_Smiling]

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x

Tomorrow I am going to contact my fs regarding doing the second test on the lupus anticoagulant (or names sticky blood, etc). are you taking the heparin injections now? or are they only when you get pregnant.

Hi, I will only get the injections when pregnant so as soon as I get a BFP. Im actually hoping that my 2nd lost of results show that it was still high so that I will get the injections. I will also start taking low dose aspirin before BFP. I need my action place to be in place before falling pregant so hopefully it is just a case of phoning up to get heparin and progesterone.

Okay I understand. My fs advised me to start taking the 80mg of baby aspirin as well along with the prenatal. Good luck for the both of us. Wednesday, Oct.20 (cycle day 12) I go in for a ultrasound to see which side I am ovulating...this should be due cd15 or cd16 (i hope its on the right side) to determine if the IUI for this cycle is worth doing. If the IUI is a go...I would be taking the progesterone right after the IUI.

Its funny because i almost had a argument with him when he said if i ovulate from the left side (which is closed for good) my right side will pickup the eggies. I am like yeah right!! and how is that possible...he couldn't even explain it or direct me to documentations or sites that will prove this theory...I only think he is saying it just to try to make me feel good but really i rather the truth the giving me false hope.

 

[35_Smiling]

Hi ladies,

Can I join this amazing thread? I am 32 and I have had 3 mc's in 10 months. The last two reached heartbeat stage then stopped but all have always been behind dates and never past 7-8 weeks. Aside from a protein s deficiency all tests results have come back normal. My DH has low sperm morphology at 3% but they say that his high sperm count makes up for this. Just had an ERPC so waiting to recover from this. I have decided to start aspirin so taking this 75mg/day from 2 days ago. On next BFP I will have 2 x clexane injections + the aspirin and progesterone and lots of praying!! I am counting my mc as a cycle and will ttc when bleeding has stopped. Wishing everyone lots of luck!

hello love and welcome. I am sorry for your losses. i am in the same boat as you. Good luck on the next round

 

[LeeC]

35_smiling

I only have 1 tube. I lost my right tube after an ectopic pregnancy in January. I asked the specialist I seen after my operation about this and he said it wouldn't make a difference and that you can ovulate from either ovary and the remaining fallopian tube can pick up the egg, I have stumbled across stories and reports on the internet supporting this, but who ever knows.
I don't know which ovary I am due to ovulate from as they both ache around ov each month. Confusing or what???

I had an appt with Quenby back in May and she said that this was unlikely and it was more probable that chances of conceiving were cut by 50%. It seems even the professionals can't agree. Like you I am keen to get a definitive answer about this and will also be asking Shehata at my appt in London.

The human body is such an amazing thing, anything is possible I suppose.

Has anyone else been given any information regarding this, would welcome anyones experience.

xxx

 

[LeeC]

Filipenko

Welcome, although I am sorry you are joining us on this thread and also sorry for your losses.

xxx

 

[LeeC]

Justkeeptryin

I have never heard anything about progesterone regarding masculinising the foetus and I'ver read quite a bit about progesterone.
Infact I'm sure Quenby was running PROMISE trials and again didn't hear anything about this, it is quite commonly prescribed on a can't do any harm basis. Interesting.
Wow, a double womb, I read a magazine article recently about a woman who had a double womb.

I hope the aspirin and Progesterone help you, I am am on steroids now also but will continue taking the aspirin and progesterone as I think it's worth throwing everything at the next one.

Big hugs xxx

 

[filipenko32]

Good luck everyone! I will keep reading this thread and keep you posted. I'll chip in if I can help with anything. We're all going to get there in the end though! Look at the beginning of this thread and all the baby pictures in the avatars! Love seeing those!

 

[filipenko32]

...isn't it testosterone that would masculinise a fetus?

 

[Talvikki]

Hi Girls,

I am new here, I'd like to to join as I just had my 4th mc. The first one was the size of 8.5 weeks, second & third 4-5 weeks and the last 7 weeks. I definitely think that the last one got this far because of Prednisolone & Clexane, but the treatment wasn't aggressive enough.

After the 3rd we got the NHS tests done and they didn't show anything unusual. Then I started serious googling and had the immunology tests done by Mr Gorgy in FGA in London. The results showed that I have very high cytokines and rather high NK-cells. B-cells also could be better.

First of all Gorgy wanted me to have Humira for the cytokines. I tried it twice, first time without and second time with intralipids. Both times the cytokines just crept higher, and we were so upset and broke that didn't even have a consultation with G after the second lot, but just thought that we must give up now and plan life without children (I'm 42).

But after a few months I got pregnant, and even if I miscarried again, I'm full of hope now, which is so scary!!! Fortunately dh has started believing in the treatments now too.

Gorgy's instructions were that I should be on Prednisolone (25mg) & Clexane from day 7 of the cycle ttc. I probably also should have got IVIG/intralipids right away when pregnant, but because we had given up the meds as the cytokines were hopelessly high, I only started Prednisolone & Clexane when I had the positive test. We also waited for the 7 weeks scan before consulting G and getting intralipids, but that was a mistake as I know now.

Lee:
With my second mc (D&C and laparoscopy) they prepared me that I might lose one of my tubes and explained to me that the egg can travel to the other side. Sounds strange but it must be true!

xx

 

[filipenko32]

Hi Girls,

I am new here, I'd like to to join as I just had my 4th mc. The first one was the size of 8.5 weeks, second & third 4-5 weeks and the last 7 weeks. I definitely think that the last one got this far because of Prednisolone & Clexane, but the treatment wasn't aggressive enough.

After the 3rd we got the NHS tests done and they didn't show anything unusual. Then I started serious googling and had the immunology tests done by Mr Gorgy in FGA in London. The results showed that I have very high cytokines and rather high NK-cells. B-cells also could be better.

First of all Gorgy wanted me to have Humira for the cytokines. I tried it twice, first time without and second time with intralipids. Both times the cytokines just crept higher, and we were so upset and broke that didn't even have a consultation with G after the second lot, but just thought that we must give up now and plan life without children (I'm 42).

But after a few months I got pregnant, and even if I miscarried again, I'm full of hope now, which is so scary!!! Fortunately dh has started believing in the treatments now too.

Gorgy's instructions were that I should be on Prednisolone (25mg) & Clexane from day 7 of the cycle ttc. I probably also should have got IVIG/intralipids right away when pregnant, but because we had given up the meds as the cytokines were hopelessly high, I only started Prednisolone & Clexane when I had the positive test. We also waited for the 7 weeks scan before consulting G and getting intralipids, but that was a mistake as I know now.

Lee:
With my second mc (D&C and laparoscopy) they prepared me that I might lose one of my tubes and explained to me that the egg can travel to the other side. Sounds strange but it must be true!

xx

Hi! I'm so sorry you're going through all this. The jury is technically out about whether immune treatments work or not and research is just that at the moment. I really think that you have no reason to give up! I think that you get pregnant easily and should just keep trying. I don't think there's any harm in experimenting with all these treatments aslong as they're not harming the baby or a financial burden (I did progesterone and 2 x injections of Clexane last time - didnt work). Sometimes i just think that once you get a good egg and sperm coming together (and the chances are high that this will happen for you if you keep trying) nothing can shake that baby. Of course if you're diagnosed with blood problems like APS etc then that's a different story and aggressive blood thinning might be needed then. https://www.rcog.org.uk/files/rcog-corp/GTG17recurrentmiscarriage.pdf
These are the gold standard for guidelines used by good consultants and they're really interesting and based on hard facts. I have printed a copy out and hightlighted parts!! So sad am i!! I hope that's helpful, sorry if you know all this already. Another thing is a book called Coming to Term is pretty good for recurrent miscarriers like us. I can't remember who wrote it now but it's by a man, however it's still very good and I got a lot of comfort from it! Don't give up! x x

 

[filipenko32]

Oh and you're always much more fertile after a pregnancy - it's like everything gets kick started and your body is ready! So keep trying!

 

[LeeC]

I think there is a good argument for prednisolone, aspirin and progesterone.
I know of many success stories.
I def think the research so far on pred is extremely positive and after 10 losses will be 100% throwing everything at my next BFP from Ov.

After seeing many consultants I think it's fair to say that they find it difficult to agree on anything.

Just my personal experience.

Will be looking forward to reporting back with Shehatas findings.

Good luck to all on this journey.

 

[filipenko32]

I think there is a good argument for prednisolone, aspirin and progesterone.
I know of many success stories.
I def think the research so far on pred is extremely positive and after 10 losses will be 100% throwing everything at my next BFP from Ov.

After seeing many consultants I think it's fair to say that they find it difficult to agree on anything.

Just my personal experience.

Will be looking forward to reporting back with Shehatas findings.

Good luck to all on this journey.

Hi, so so sorry for your losses and that you are suffering so much, I can't imagine the pain you must be going through...
Definitely heard of loads of success stories with aspirin, progesterone, clexane.
I have heard lots of success stories about prednisolone too and I don't think that they would be doing so much research into it if it wasn't most likely helpful and valid. However, they don't at the moment have the final results from proper controlled studies but i'm sure they will in the near future, then they will have quick ways to diagnose immune problems and prednisolone can confidently be given to help people before they have more mc's. The drip treatments and so on are supposed to not work after scientifically controlled trials BUT who knows?? There are success stories out there and clinics still treat so... My doctor gave prednisolone to me for this last pregnancy but only when the heartbeat was slow. It did help the heartbeat as over 3 days it went from 100 - 145! I am quite sure that the prednisolone had something to do with this but perhaps it was given too late?? As i understand it Dr S treats you from BFP or earlier which is good and makes sense to me. Although there is a lot of argument over the reliability of blood results from NK cells etc testing, as I understand it (might be very wrong and you've seen Dr Quenby) a womb biopsy and/or bloods sent off to a chicago clinic is the most reliable way to diagnose immune problems at the moment because immune cells in the uterine lining are different to general bloods. However I always think that if they will treat you anyway and you're willing to go for it, it might not be worth going through all that and just going for the treatment... I remember the story about a lady who had 18 mc's and went to see Dr S to have success with prednisolone - I don't think anyone can deny that this was what did it in the end!! I wish you all the luck in the world and i'm sure you'll get there very soon, i just have a feeling!!

 

[Talvikki]

Filipenko,

Thanks for the encouragement, it really helps...!! I think I have to continue trying because the latest baby survived this far!

The pdf is really interesting, I haven't seen this detailed reports before, and I never knew about the link between progesterone and cytokines! I'll look into the book as well! My most valuable source of info so far has been Alan Beer's book.

Steroids have been proven to work already in Quenby's trial, (I tried to post a link here but they won't let me because I am a new member so could be spam), but the study group was small and Quenby is conservative with the doses and when to start the treatment. Shehata says in interviews that the success rate of his immune treatments is 80%. I want to believe that!

Btw, I don' t get pregnant easily any more. 5 years ago when we started I got lucky on the first attempt, but the last one took 1.5 years! I don't know if it is the cytokines or my age, probably both.

Good luck with this cycle!!! I think I will give my body a break from the steroids and belly bruising and wait for the 1st period to start ttc again. xxx

 

[filipenko32]

Filipenko,

Thanks for the encouragement, it really helps...!! I think I have to continue trying because the latest baby survived this far!

The pdf is really interesting, I haven't seen this detailed reports before, and I never knew about the link between progesterone and cytokines! I'll look into the book as well! My most valuable source of info so far has been Alan Beer's book.

Steroids have been proven to work already in Quenby's trial, (I tried to post a link here but they won't let me because I am a new member so could be spam), but the study group was small and Quenby is conservative with the doses and when to start the treatment. Shehata says in interviews that the success rate of his immune treatments is 80%. I want to believe that!

Btw, I don' t get pregnant easily any more. 5 years ago when we started I got lucky on the first attempt, but the last one took 1.5 years! I don't know if it is the cytokines or my age, probably both.

Good luck with this cycle!!! I think I will give my body a break from the steroids and belly bruising and wait for the 1st period to start ttc again. xxx

Hi! I love that 80% statistic from dr s that's reallly encouraging and I will have to get that book, i've heard a lot about Alan Beer's work. I am going to carry on taking aspirin, then at about 6dpo I am hitting the progresterone and 2 x injections of clexane until hopefully a bfp. If that doesn't work out then I will make an appointment with Dr s and try the steroid route - they already have a £50 deposit of mine as I had to cancel due to getting pregnant again. Wishing you all the luck in the world! x

 

[bellamamma]

I think there is a good argument for prednisolone, aspirin and progesterone.
I know of many success stories.
I def think the research so far on pred is extremely positive and after 10 losses will be 100% throwing everything at my next BFP from Ov.

After seeing many consultants I think it's fair to say that they find it difficult to agree on anything.

Just my personal experience.

Will be looking forward to reporting back with Shehatas findings.

Good luck to all on this journey.

Def agree that all consultants sing a different song! I've been told so many diff things! My current rpl specialist said he's had a 70 percent success rate using empirical treatment, eg; everything!! Hope it continues! He doesn't even test for NK, just treats with steroids.
When do you see Shehata? Also looking forward to hearing abt it!

 

[petitpas]

Filipenko, would you consider taking the progesterone a little earlier, i.e. just after ovulation? After all, I think that's when we would most likely be having a deficiency?

 

[filipenko32]

Hi Petitpas, yeah that could be an option,thanks! How are you doing? Do you have any scans coming up or are you waiting until 12 weeks?

 

[petitpas]

Waiting until 12 weeks - IMPOSSIBLE!!!

Besides the emotional worry after all these losses, the first time I made it a few days shy of 12 weeks it took me three months (!) to miscarry. Even though the baby had died my placenta kept growing and took an awfully good hold of me inside. I know it's super duper rare but it happened to me once and I'm not going to let an mmc go that far again. So yeah, I want ducky to be sticky but not ubersticky!

Saying that, my last scan was exactly a week ago and I've been ok not craving a quick look yet. I'm due another scan later this week, which is pretty much the longest I'll have to wait between scans.

Sorry, I don't want to sound blasé about it all and casual about the fact that I have so many scans. I am extremely grateful that I can have them.

If I didn't have weekly scans, I think I'd just about cope with a heartbeat scan at 6+ weeks to check whether the baby is viable and then another scan at 9 weeks to see whether it survived the 8th week (not a good week for me). Then again, I might have a panic in between and need reassurance. I can't help being a nervous Mum-to-be!

Anyways, I'm on Mr S's plan and he likes to check every two weeks. I also have a local consultant who is incredibly supportive and she has offered to scan me in alternate weeks.

Urgh, sorry for the ramble!

 

[filipenko32]

Waiting until 12 weeks - IMPOSSIBLE!!!

Besides the emotional worry after all these losses, the first time I made it a few days shy of 12 weeks it took me three months (!) to miscarry. Even though the baby had died my placenta kept growing and took an awfully good hold of me inside. I know it's super duper rare but it happened to me once and I'm not going to let an mmc go that far again. So yeah, I want ducky to be sticky but not ubersticky!

Saying that, my last scan was exactly a week ago and I've been ok not craving a quick look yet. I'm due another scan later this week, which is pretty much the longest I'll have to wait between scans.

Sorry, I don't want to sound blasé about it all and casual about the fact that I have so many scans. I am extremely grateful that I can have them.

If I didn't have weekly scans, I think I'd just about cope with a heartbeat scan at 6+ weeks to check whether the baby is viable and then another scan at 9 weeks to see whether it survived the 8th week (not a good week for me). Then again, I might have a panic in between and need reassurance. I can't help being a nervous Mum-to-be!

Anyways, I'm on Mr S's plan and he likes to check every two weeks. I also have a local consultant who is incredibly supportive and she has offered to scan me in alternate weeks.

Urgh, sorry for the ramble!

I COMPLETELY understand - I think I had about 6 or 7 early scans in total and that's nearly more than i was week's pregnant!! I REALLY hope everything will work out for you this time, you've been through so much. I have a strong feeling it will work out for you (but definitely not like my doctor's feeling!!) I think it's important to have the scans anyway especially if we're on meds as they can observe what's happening and sometimes alter the dose. Keeping everything tightly crossed that your baby's got just the right amount of glue this time!