Recurrent Miscarriage Thread

[NorthStar]

I had RPL testing recently with a gynae nurse (also in Scotland) just bloods taken, don't think there's any chromosome testing here, just clotting disorder and thyroid function.

Progesterone cream is a waste of money IMO, didn't make any difference to my LP at all, neither did a really high dose of BVits. I bought it off Amazon but really wouldn't bother, as the other poster says you're better getting proper medical help, but......

Good luck finding a GP to prescribe any progesterone supplementation at all, even going private I couldn't get anyone to listen to my concerns, so I bought it online which is probably dodgy but what can I do?

Sorry to be a drag, I just don't feel all that positive ATM or that there's any real medical help available on the NHS

 

[LPF]

Can you share a link to your temps?

The results from the promise trial (progesterone for unexplained recurrent miscarriages) are due out next month so keep an eye on them. If they support the medication you'll have hard evidence to hit your doctors with.
The only other thing I can suggest is to change GP or keep at them with tears and all you can to convince them you need help.
What treatment is your RPL clinic offering you?

Pre-ov temps are around 36.1-36.2 region and after-ov temps are all over the place around 36.4-36.7.

Will keep an eye for the promise trial results.

Have seen multiple GPs and get the same result. As I'm now under an RPL consultant they've washed their hands of me.

No treatment from RPL consultant. I'm waiting on one anti thrombin 3 retest to come back as that was the only iffy result. If that comes back fine I won't even be seen again.....they don't believe in treating unless there is a diagnosable problem.

I don't have time for a second opinion (it's taken 6 months to get this far) as from January dh will be working away from home for very long periods and we have to give up the TTC dream. I've got 4 ovulation so before then to get a baby to stick (I always conceive in 3 but lose them) so will throw anything at it.....

 

[LPF]

I had RPL testing recently with a gynae nurse (also in Scotland) just bloods taken, don't think there's any chromosome testing here, just clotting disorder and thyroid function.

Progesterone cream is a waste of money IMO, didn't make any difference to my LP at all, neither did a really high dose of BVits. I bought it off Amazon but really wouldn't bother, as the other poster says you're better getting proper medical help, but......

Good luck finding a GP to prescribe any progesterone supplementation at all, even going private I couldn't get anyone to listen to my concerns, so I bought it online which is probably dodgy but what can I do?

Sorry to be a drag, I just don't feel all that positive ATM or that there's any real medical help available on the NHS

I know how you feel.

I'm sure sometimes we know more than the doctors but we have no control over what we know. There's so many things that could be wrong with us yet they test and treat for so little......

 

[petitpas]

LPF, I know you're clutching at straws but in all honest, I don't see anything wrong with those temperatures
All I can suggest is trying a new GP and pleading your case or going private since time is running out. If you go private, try a doctor who also tests for nkcells. I had my follow up with results and a treatment plan two weeks after my first appointment. You can get copies of all the tests you have already had and take them with you so you don't need to be retested.
My personal opinion is that if you've been tested for everything on the NHS and are still unexplained then immune issues are a strong candidate for being the cause of your problems.

 

[LPF]

LPF, I know you're clutching at straws but in all honest, I don't see anything wrong with those temperatures
All I can suggest is trying a new GP and pleading your case or going private since time is running out. If you go private, try a doctor who also tests for nkcells. I had my follow up with results and a treatment plan two weeks after my first appointment. You can get copies of all the tests you have already had and take them with you so you don't need to be retested.
My personal opinion is that if you've been tested for everything on the NHS and are still unexplained then immune issues are a strong candidate for being the cause of your problems.

I didn't think there was anything wrong with the temperatures until I looked it up in a charting book and it said they were low and should be investigated.....this is so confusing.

 

[loeylo]

Hope39- I asked at my bloods yesterday for my ectopic and the midwife only told me about those tests - although she isn't involved in the clinic directly so was just going by what she had heard elsewhere. I'm sure they won't look into anything physiological as I don't think they have scanners in the clinic which I am going to.

North Star - where in Scotland are you? I'm in the central belt

 

[Hope39]

Hope39- I asked at my bloods yesterday for my ectopic and the midwife only told me about those tests - although she isn't involved in the clinic directly so was just going by what she had heard elsewhere. I'm sure they won't look into anything physiological as I don't think they have scanners in the clinic which I am going to.

North Star - where in Scotland are you? I'm in the central belt

If you are seeing a recurrent miscarriage specialist then I would have thought they would organise a uterine internal scan at some point. I didn't have it at my first appt, I had it done just before my 2nd appt when I got my blood test results

A uterine anomalies is a common cause of mc, I had 6 mc before my uterine anomalies was operated on, I carried no7 (Isaac) to 27w following septum removal. I also did a few other things too which probably helped me get to 27w

Xx

 

[loeylo]

Wouldn't an abnormality be picked up by a normal ultrasound? With my most recent pregnancy, they told me that I was "difficult to scan" and were speaking about transverse - I don't know if I have maybe got a transverse uterus, or if they wanted a transverse view. It isn't as if I am overweight or anything, and they haven't really had issues scanning me before. Mins you, I was also in a lot of pain so I might just have been tensing up!

 

[petitpas]

LPF, could you ask for a simple progesterone blood test during your luteal phase? That's quite cheap so maybe your gp might agree? How frustrating that they aren't more supportive

 

[Hope39]

Wouldn't an abnormality be picked up by a normal ultrasound? With my most recent pregnancy, they told me that I was "difficult to scan" and were speaking about transverse - I don't know if I have maybe got a transverse uterus, or if they wanted a transverse view. It isn't as if I am overweight or anything, and they haven't really had issues scanning me before. Mins you, I was also in a lot of pain so I might just have been tensing up!

In my case no it wasnt picked up on a normal scan

My first pregnancy i was scanned at 12w, missed mc, second pregnancy scan was at 12w, again a missed mc, pregnancy no3 i was scanned at 6w (hb present) and 9w showed a missed mc again, not one sonographer noticed a uterine anomalie

It wasnt till i had a scan as part of the recurrent miscarriage investigations that it was picked up and even then they managed to misdiagnose me with a bicornutate uterus (cant operate on one of them) I had a 3d scan after my 6th loss and thats when it was picked up it was septate so had an operation

They look at your ovaries for pcos too, they just have a good look around xx

 

[Lou2307]

Sorry I don't post much but I do try to read thru all ur posts.

Northstar... Whereabouts in Scotland are you??
I'm in ayrshire and I have had everything tested at the recurrent miscarriage clinc run at ayrshire maternity unit.
After my 3rd mc I had the full rpl work up including karotyping. This was the first thing I was tested for. When all came back normal I then had a hsg also normal. They do all the studies there so I've used all sorts of treatment.
I've also had thyroid antibodies tested... Also normal. I did go and get nk cells tested as well paid for by myself...also normal.
I've had this work up done twice as my rpl has been going on 10 years. But all comes back normal.
The consultant there pretty much lets me decide my own treatment plan as she'll do whatever it takes. She puts all this into a letter and sends it to my gp and I go there and they just prescribe it.
Could you maybe ask to get referred here as it sounds alot better than what you are getting now x

 

[NorthStar]

Sorry I don't post much but I do try to read thru all ur posts.

Northstar... Whereabouts in Scotland are you??
I'm in ayrshire and I have had everything tested at the recurrent miscarriage clinc run at ayrshire maternity unit.
After my 3rd mc I had the full rpl work up including karotyping. This was the first thing I was tested for. When all came back normal I then had a hsg also normal. They do all the studies there so I've used all sorts of treatment.
I've also had thyroid antibodies tested... Also normal. I did go and get nk cells tested as well paid for by myself...also normal.
I've had this work up done twice as my rpl has been going on 10 years. But all comes back normal.
The consultant there pretty much lets me decide my own treatment plan as she'll do whatever it takes. She puts all this into a letter and sends it to my gp and I go there and they just prescribe it.
Could you maybe ask to get referred here as it sounds alot better than what you are getting now x

Thank I'm in Glasgow Lou2307, so it's all through the SGH. The nurse was nice, but made the point that I was lucky to get any testing at all after only 2 losses. I'd be willing to pay for private testing as well, it's all just very frustrating

The nurse told me that like your tests, 85% of the time everything comes back normal so you never know what causes the problem but she did talk about my age, to the point where I said that was the one factor I could do nothing about in an otherwise healthy lifestyle

Coming up to OV and not sure whether to roll the dice again tbh.

 

[Lou2307]

I know!! U just don't know what to do for the best. I'm currently just about to go through my 9th loss... Pretty much been confirmed but have to go back for bloods. They think its ectopic. I'm seriously pissed of with this shit!!

Def look into the nk cells. It's worth the test even if its normal.
I'm not buying the unexplained crap anymore. I just don't know where to turn now.
But a nice big break is on the cards!!
How old are you?? I'm 34 my doc says I have until I'm 40

 

[Hope39]

Sorry I don't post much but I do try to read thru all ur posts.

Northstar... Whereabouts in Scotland are you??
I'm in ayrshire and I have had everything tested at the recurrent miscarriage clinc run at ayrshire maternity unit.
After my 3rd mc I had the full rpl work up including karotyping. This was the first thing I was tested for. When all came back normal I then had a hsg also normal. They do all the studies there so I've used all sorts of treatment.
I've also had thyroid antibodies tested... Also normal. I did go and get nk cells tested as well paid for by myself...also normal.
I've had this work up done twice as my rpl has been going on 10 years. But all comes back normal.
The consultant there pretty much lets me decide my own treatment plan as she'll do whatever it takes. She puts all this into a letter and sends it to my gp and I go there and they just prescribe it.
Could you maybe ask to get referred here as it sounds alot better than what you are getting now x

Have you tried steroids as part if your treatment plan?

One of the girls that use to be on this thread had unexplained but tried steroids and it worked

She was under Wishaw

X

 

[mowat]

Have been hesitant to post here lately. My last miscarriage and surgery was just over a year ago. I've had all the investigations I can reasonably get in my area and remain unexplained. Since my last miscarriage I haven't even been able to get pregnant so when I turned 40 in May I decided to pursue IVF.

Spoiler

I'm currently 9 weeks pregnant with twins after transferring 2 embryos on July 25th. I started bleeding just before my first u/s at 7 weeks, but surprisingly the tech was able to find two heartbeats almost immediately. I started freaking out the other day when the bleeding increased and managed to get another ultrasound. Couldn't believe there were 2 heartbeats and everything looked fine. Not even close to be relaxed, but there are days when I feel slightly hopeful. I'm on estrogen, progesterone, aspirin and prednisone as prescribed by the fertility clinic.

I have one DS that I conceived easily before all my miscarriages. Just no explanation. Really hoping everyone on this thread might find their solution.

 

[Lou2307]

Sorry I don't post much but I do try to read thru all ur posts.

Northstar... Whereabouts in Scotland are you??
I'm in ayrshire and I have had everything tested at the recurrent miscarriage clinc run at ayrshire maternity unit.
After my 3rd mc I had the full rpl work up including karotyping. This was the first thing I was tested for. When all came back normal I then had a hsg also normal. They do all the studies there so I've used all sorts of treatment.
I've also had thyroid antibodies tested... Also normal. I did go and get nk cells tested as well paid for by myself...also normal.
I've had this work up done twice as my rpl has been going on 10 years. But all comes back normal.


The consultant there pretty much lets me decide my own treatment plan as she'll do whatever it takes. She puts all this into a letter and sends it to my gp and I go there and they just prescribe it.
Could you maybe ask to get referred here as it sounds alot better than what you are getting now x

Have you tried steroids as part if your treatment plan?

One of the girls that use to be on this thread had unexplained but tried steroids and it worked

She was under Wishaw

X

Yes
I've tried prednisolone these past 2 pregnancies. 20mg and 25mg.. Still didn't work.
1st time ending in a chemical and this time I got a positive test couple of weeks ago. Tested early so got on the meds early. Went for a scan on Monday all they seen was a 3mm sac so they thought either early or ectopic. Had betas done theyre really low at 218. Had them done again they went to 310 so they suspect ectopic so maybe I just need to hit the right pregnancy with the meds but is there ever gonna be the right pregnancy.
I'm waiting on the consultant getting back to me but looks like I've to go for more bloods tomorrow. Hopefully they'll have dropped and I can just get things moving along.

This is my 9th failed pregnancy and I'm seriously losing all hope x

 

[ginny83]

I'm not sure if my "recipe" is definitely going to work for me, but I am 22 weeks at the moment after 4 unexplained losses at 12, 16, 4 and 14 weeks.

I started on 10mg steroids while ttc, then upped to 20mg from bfp to 14 weeks. From bfp I also started aspirin (which I'm still on), progesterone, clexane and estrogen. I also had intralipid transfusions at bfp, then 7, 9, 11 and 13 weeks.

I had high NK cell levels found in a uterine biopsy after my 4th loss, even though the year before I had a blood test that said my NK levels were fine. The last loss before this one I was only on clexane, aspirin and progesterone - so I feel like having the extra stuff has made all the difference for me.

Just thought I'd share xx Hope everyone is doing ok

 

[Hope39]

Lou

Do you start steroids at bfp? I mc on 20mg from bfp so I took 25mg from ovulation and upped to 30 on bfp (my consultant didn't know I increased to 30)

I made it to 27w and then had an abruption xx

 

[Hope39]

I'm not sure if my "recipe" is definitely going to work for me, but I am 22 weeks at the moment after 4 unexplained losses at 12, 16, 4 and 14 weeks.

I started on 10mg steroids while ttc, then upped to 20mg from bfp to 14 weeks. From bfp I also started aspirin (which I'm still on), progesterone, clexane and estrogen. I also had intralipid transfusions at bfp, then 7, 9, 11 and 13 weeks.

I had high NK cell levels found in a uterine biopsy after my 4th loss, even though the year before I had a blood test that said my NK levels were fine. The last loss before this one I was only on clexane, aspirin and progesterone - so I feel like having the extra stuff has made all the difference for me.

Just thought I'd share xx Hope everyone is doing ok

22w wahoo ginny

Xx

 

[ab75]

Congrats again Mowat. Xx