Recurrent Miscarriage Thread

[LPF]

Well that was a waste of time.....

She didn't even want to do any tests as she said I had a panel done back in December (after MC) which were 'normal'.

She said any tests concerning RPL would need to be done by the clinic and wouldn't discuss it. She has arranged to have a full panel again and included things like glucose etc and she also said that would look at LH and FSH....I asked about day 2 and day 21 bloods but she dismissed them and said I'd have to wait for my clinic appointment.

It was hard to get upset as ds was there being a 3 yr old boy and disrupting us constantly. She was nice, but very matter of fact and certainly not in a rush or felt time was of the essence.

Realistically it could September at least before I get an appointment and then some of the tests then will take another 2 months, especially those which are based on cycle dates as my cycle is now 6-7 weeks long.

I've got under 6 months before dh won't be living at home for long periods of time amd we have to stop TTC so I either need to look at getting this done quicker and privately, which I can't really afford and not sure that it's possible to do that quickly anyway or just stop and accept it's not meant to be

Feeling very sad, upset and frustrated at the moment. No one seems to care how hard this is and no one wants to help.

 

[LPF]

Can is also ask - if I went to a private clinic and had blood tests such as karotyping or thrombophillia which take 6-8 weeks on the nhs - are they done any sooner privately or is that the standard processing time regardless of who does it.

I just don't think I have enough time left......

 

[kelly1973]

it seems like some docs in the uk don't want to help, especially if you are on the older side, I went in today to discuss getting clomid as I know I don't ovulate every month and she said they didn't prescribe it from this doctors and she would have to refer me to a fertility clinic and said this could take months greatthanks for that, they really are unhelpful at times

 

[sunshine85]

Hey girls

We had an appt today. Still measuring ahead. We told family on 4th of July, everyone is so excited. I beginning to relax a little tiny bit. Inam measuring 13 weeks and 4 days. Had the NT scan and all is perfect so far. They took blood for whatever reason and no news is good news she said, but wow the baby was kicking away at me. We were able to see the fingers and toes. At one point it looked like the baby was giving us the finger lol. My dh was in awe, you guys should have seen his face. We are praying this is our rainbow and this is the farthest I have ever been. I think I am in second tri now, but I am taking it one day at a time. My doppler has been a godsend. I hope all you ladies are doing great! I have put a pic up to see xx


Still on the progesterone baby aspirin thingy so hoping its the combo I needed...

 

[figtree]

Hi everyone
Im currently having my third miscarriage the second i've had this year just after having one in march..i started spotting 2 weeks ago but they told be my levels were still going up and then i tested yesterday and called back today for the results of the levels which they said had actually dropped even though i started taking progesterone.. I went for blood work the last time it happened and they said it came back clear, i've had sonograms and they say everything looks fine. I do live with type 1 diabetes and am in control of my blood glucose so i'm not sure what else it could be…my mom suggested i get my hormones checked before i try again which won't be for a long time…to say I'm heartbroken is an understatement…

 

[sunshine85]

Hi everyone
Im currently having my third miscarriage the second i've had this year just after having one in march..i started spotting 2 weeks ago but they told be my levels were still going up and then i tested yesterday and called back today for the results of the levels which they said had actually dropped even though i started taking progesterone.. I went for blood work the last time it happened and they said it came back clear, i've had sonograms and they say everything looks fine. I do live with type 1 diabetes and am in control of my blood glucose so i'm not sure what else it could be…my mom suggested i get my hormones checked before i try again which won't be for a long time…to say I'm heartbroken is an understatement…

So sorry to hear this :sad: my thoughts are with you.

 

[confuzion]

So been trying to find a thread where I 'fit' and it's been kind of difficult. Waiting to try but that part of the forum everyone is waiting to try for a different reason.

Some of you know me . I'm currently on loss #4. My third missed miscarriage (haven't passed it yet). I will try to give a quick summary of testing so far.

I had a bunch of testing done after my second loss. Full thrombophilia screening, ANA, thyroid tests, hormone tests, diabetes test, and all came back normal. My second MMC turned out to be a 45X monosomy (turner's). And that's the only answer we've ever gotten from tests. My RPL specialist suspects we have a case of recurrent aneuploidy, and after discovering this 4th loss, he has ordered all the same tests again as well as a karyotype for me and my husband. If it is recurrent aneuploidy, then it's likely one of us has a balanced translocation and I'm honestly terrified to get these results back.

So currently waiting for all the test results, waiting to miscarry, and just kind of feeling fed up. I hope I'll be welcomed here.

 

[petitpas]

LPF, the best answer to your timing question would be to just phone the private clinic you are thinking of. They can give you exact costs and timelines in minutes. Don't be shy, everyone asks them the same questions. Pooh to your doctor for being so unhelpful! Especially, after making you wait so long for your referral.
Do you have any health plan that might help with costs? Benenden?
Also, keep ringing the NHS clinic and gently mention that if you aren't seen soon you are considering making an official complaint as you are so upset with all the delays...
You could mention that you are available at short notice so could you take over a cancelled appointment? I managed to get in earlier a couple of times by suggesting this. Don't give up just yet! You can fight your way to that sticky baby treatment

Figtree, sorry for your losses Do you know what tests you had after your second loss?

 

[petitpas]

Hello confuzion,
So sorry you have to find yourself here I take it if you are waiting to naturally miscarry that this foetus won't be tested?
You know, even if you or your husband are found to have a balanced translocation it doesn't necessarily mean babies are impossible to have. One lady who used to frequent this thread had a balanced translocation. She was advised that in her case no boy babies would survive but that girls would. Bizarrely (and very happily!), she ended up giving birth to a healthy boy but my point is that it really depends on the specific chromosome that is affected and it doesn't necessarily mean that all babies would be affected.

It's probably going to be quite nerve-wracking to wait for the results and being in miscarriage limbo surely doesn't help so big hugs to you

 

[newlywedtzh]

confuzion this is definitely the home for you Lots of support and information here

 

[confuzion]

Hello confuzion,
So sorry you have to find yourself here I take it if you are waiting to naturally miscarry that this foetus won't be tested?
You know, even if you or your husband are found to have a balanced translocation it doesn't necessarily mean babies are impossible to have. One lady who used to frequent this thread had a balanced translocation. She was advised that in her case no boy babies would survive but that girls would. Bizarrely (and very happily!), she ended up giving birth to a healthy boy but my point is that it really depends on the specific chromosome that is affected and it doesn't necessarily mean that all babies would be affected.

It's probably going to be quite nerve-wracking to wait for the results and being in miscarriage limbo surely doesn't help so big hugs to you

Thank you for lengthy helpful response . The RPL specialist said since there's only a 1cm sac (barely 5 week pregnancy), there would really be nothing to test and not worth a d&c.

& I know it can be done even with a balanced translocation but it certainly would complicate things immensely. My husband is already pushing for IVF with PGD because he's afraid we'll end up with a special needs child. But I guess we just have to wait and see what the results say. And if one of us does have it (more than likely me as the abnormality from loss #2 was shown to be of maternal origin), what type and what it means for us.

And yes waiting for the results right now is much worse than miscarriage limbo. I'm feeling a little numb to this loss. Never really let myself get excited about it so it wasn't as much of a blow. And considering we're waiting anyway, the waiting doesn't feel so bad thankfully.

Thank you newlywed. I will try to read back some time soon and familiarize myself with everyone.

 

[Squig34]

LPF, sorry to hear your appointment was so pointless. I agree with Petitpas, just ring the consultant you want to see privately and get started - you can get prices and things (probably from the receptionist) about some of the testing that takes longer - especially since you're saying your husband will have to go away soon. I'm so sorry you have that additional pressure from all these delays.

Figtree - welcome, and sorry you are going through this.

Confuzion - unfortunately, this is exactly the place for you you are very welcome.

 

[petitpas]

Big hugs to you Hope. Today can't have been easy but I'm sure it was beautiful and worthy of Isaac and all the love that surrounded his little life

 

[kelly1973]

been thinking of you hope xxxx fly high baby Isaac xx

 

[blueblue]

Hope - I'm so sorry for your loss.

LPF - sorry for late reply, really sorry your doctor wasn't helpful. I'm sorry it's so difficult, it's the last thing you need at the moment. Other tests include anti-thyroid antibodies.

I had the karyotyping done at a Spire private hospital but the test was ordering through a privatebloodtests website so we only paid £175 each for the test and no doctors/appointment fees. The results come back in 15 working days via email and if they are out of normal range a doctor comments on the results. If you have health insurance they may not cover karyotyping and some of the more unusual tests but they should cover a lot. I'm with squig - phone the hospital and complain and try and get them to see you sooner.

Confuzion - sorry you are having a tough time

 

[LPF]

Hello all - quick update on my appointments battle!

I phoned again on Wednesday and was told the usual 'no one has looked at it' 'there might be a doctor in clinic later but they might not look at letters' 'you'll just have to wait but we don't know for how long' - I've had these responses for 3 weeks - it's not THAT difficult to just get an appointment issued surely!!!

Anyway I emailed PALS on Wednesday. Outlined my 9 week journey of hell to just get an appointment and I didn't complain but I asked if they could offer any suggestions on how I could get a resolution. On Thursday I got an email saying that they would help and contacted women's and children's directorate with my issues......

Guess what arrived this morning (48hrs later) - an appointment for 12 days time!

I work at this hospital so I know the systems and what works and this approach of 'who shouts the loudest gets what they want' approach always makes me cross but ultimately I finally got an appointment date which is all I wanted.

I actually feel positive for the first time in months, so relieved ill actually be seen. I'm having generic blood tests on Monday so I'll take those results with me too.

 

[DiscoRia]

Hello Ladies,

Hope, I am so very sorry to read of your loss, I don't have the words, but you are in my thoughts xx

confuzion, I am so sorry for your loss. I can't imagine how dificult the waiting must be for you, but we are all here to help you in any way that we can xx

Thank you for your warm welcomes

Disco, sorry to have to welcome you here I'm not sure whether it helps but if you are heterozygous with just one mthfr gene then there most probably isn't anything to worry about - about 40% of the population have it. Only when you are homozygous (or heterozygous with more than one mthfr mutation - I'm not sure if that is what you meant by 'compound'?) do you need to do something about it in terms of aspirin/heparin and high dose folic acid. Just so you aren't shocked if your doctor decides it is harmless. Saying that, a lot of us (myself included) are prescribed a number of can't hurt, might help meds such as high dose folic acid, baby aspirin and progesterone so you might get them anyway
Gosh, I hope that all made sense. Let me know if it didn't!

Pepitas, it totally made sense Thank you for all the info!

Disco I am Homo MTHFR A type (2 copies of the mutation- so I don't have a normal copy of the gene at all). Do you know what type you are? One can cause some clotting issues, and the other (A type that I have) affects your ability to breakdown folic acid properly. I was prescribed RX strength folic acid this pregnancy (as well as progesterone, and baby aspirin daily).

Thank you for your reply newlywedz!

Disco, I m so sorry for your losses. I agree re the mutation..I m also homozygous for the A type which apparently has more to do with breaking colic acid down...my doc didn't even care to discuss it further but I ll be taking extra colic acid if I ever get a bfp again.

I'm sorry that your doctor was so dismissive I agree about taking precautions for any future bfp. I've read that us mthfr's should be taking a methylated version of folate,because we can't methylate properly due to the mutation, in order for it to be useful for our bodies. Thank you for your reply xx

I used the term compound hetero because I'd seen it described as such a few times, I have one mutated version of both the A and C points on the gene. I've done extensive (read: Sh*tloads!) reading on the mthfr mutation and already 'prescribed' myself baby asprin, methylfolate and methylcobalamin (b12).

I spoke to my gp (just to go over test results with her) and she dismissed it completely, but later went on to recommend and refer us to a clinic in Milan that she said is one of the best in the country. So not sure if she really thinks it's an issue or just wants to put us at ease

My homocysteine levels came back in the normal range... so in theory that shouldn't mean clotting is an issue, but I'm still not carrying to term. So something is surely off?!

I got all my bloods back and my hormones are actually all in the normal range, but on the low side of normal, so this could also be a factor.. maybe? Or maybe I'm clutching at straws?!

We're just waiting to get my husband's sperm analysis results and my smear and swab tests results back and we can book in to discuss results with the specialists. That, sadly, won't be happening until mid/late august, but at least it means we are heading in the right direction!

Of course, I'm hoping to get a bfp that sticks thanks to my self-medication, but I'm also scared to death that it inevitably means another miscarriage. How is it possible to be so scared of something that you want so much? Some days are great and I am positive and hopeful and other days are so very dark and empty. I guess that is life and I'm sure I'm not the only one who experiences the swings and roundabouts hugs for us all xx

 

[Squig34]

LPF - glad you have finally got an appointment! You're right, it shouldn't have to be like that but unfortunately the NHS is so overstretched in places, it is. I hope you have a really useful appointment now you've finally got it!

Disco - regardless of your GP's motivation, I'm glad you've got a referral to a great clinic, and I hope it's really helpful for you and that someone goes through your results closely to come up with some possible solutions for you.

 

[mohini12]

hope-i am really sorry about your loss.its trully heart breaking .i have tear in my eyes to read your post.big hug))

 

[blueblue]

LPF - so glad you finally have your appointment . Think I missed your new post and replied to your older one, oops. I can't believe how much we all have to fight to get any answers.

DiscoRia - I know how you feel, I'm almost glad I can't try at the moment as I'm scared of getting pregnant again and it going wrong.