Recurrent Miscarriage Thread

[petitpas]

Davies, it's worth contacting your insurer because whilst infertility treatment is not covered by most, the investigations of infertility are!
Ultimately, if you had private investigations and they found you had to have treatment when falling pregnant, that treatment (injections or pills or whatever) would not be covered. Saying that, once you have a diagnosis you can go through the NHS route and get the medication prescribed through them.

 

[daviess3]

Thanks ladies feel so confused think i just need some tests!!! xx

 

[rainbowpebble]

hey guys, thanks for the advice and support. xx
i'm going to the doc tomorrow as i have my day off work.
Good Luck to all of you. GBU

 

[petitpas]

Good luck rainbowpebble! Be firm and insist on a scan asap to find out what's going on in there xxx

 

[livinginhope2]

Hi ladies

Just been searching online for some support groups and found you guys, currently suffering loss of my 14th m/c totally devastated again! I just really wanted to see if anyone has any positive stories to share to give me some hope!

I have antiphspholid syndrome which requires daily heparin/fragmin injections but unfortunately they wont give me them until they have seen a heartbeat on the scan at 6 weeks and sadly, my m/c seem to happen between 5-6 weeks. I have heard progesterone may also help and I am desperate now, any advice greatly appreciated x

thanks x x

 

[lynnb]

Hi ladies

Just been searching online for some support groups and found you guys, currently suffering loss of my 14th m/c totally devastated again! I just really wanted to see if anyone has any positive stories to share to give me some hope!

I have antiphspholid syndrome which requires daily heparin/fragmin injections but unfortunately they wont give me them until they have seen a heartbeat on the scan at 6 weeks and sadly, my m/c seem to happen between 5-6 weeks. I have heard progesterone may also help and I am desperate now, any advice greatly appreciated x

thanks x x

Hi & welcome, so sorry for all you gone through & are going through now But so glad you've managed to find your way here. The ladies on here are so friendly & supportive.

Don't know anything about antiphspholid syndrome but can you not change drs so that you get the injections? It seems so cruel that they don't give it to you until after HB seen.

Again so sorry about your losses

 

[stardust22]

Welcome livinginhope. I am glad you found us! we are all a great support for each other. So sorry for how much heartache you have endured. I seem to have come so very cynical about the help we get from the NHS (and I work for them!!!) we are all just desperate for our baby and they just keep making us wait and dont seem to want to really help us, or so it seems.

I dont really have a happy ending (yet) I have just discovered I am pregnant (after 4 losses) 2 of which had heartbeas and passed later. I am now on asprin, progesterone and cleaxane injections, from my BFP. I have had one raised blood level for sticky blood but I got pregnant before I had the 2nd test but consultant asked me what I wanted to do. his view was that he treats me for having the problem rather than just letting fate take over, I said give me anything as I just cant face doing nothing. other consultants dont seem as easy to convince!

Have you ever been tested for the natural killer cells? Mr Shehata in Harley street seems to be the best in the country and I have an app with him in April as I am convinced this new pregnancy will end (LIKE BEFORE) but I read yesterday that the Spire hospitals are now testing for NKC and you probably have one near where you live. Just telling you anything I know (which isnt a lot so sorry if I have rambled about what you already know)

As for me, My digital has gone up to 2-3 today at 15dpo and the pinkish watery has turned darked brown, only when I wipe. after a sleepless night and convinced it was all over I guess I have to remain strong and hope this might work out, I have never had this type of thing with any of my others so just trying to think it might be a good thing.

Hope you are all ok, Thinking of you all xxxxxx

 

[livinginhope2]

Thank you so much for your kind words xx

Apparently its NHS policy to start injections at 6 weeks, antiphspholid is another name for Hughes Syndrome?? the blood clotting disorder.

xx

 

[stardust22]

Mmmm he said to start straight away! Maybe cos I was so depserate and he just said that I need to understand that it might not change the outcome and all the risks involved. I wonder if any of these doctors really know what the hell is going on!!!

 

[livinginhope2]

stardust

I know exactly how you feel, it feels like you are hitting your head off a brick wall. To be honest I dont think they know enough about it all and they dont appear to be doing any more research or anything. Every time we go to see doc we get the sympathy and the disbelief its happened again but no help, well thats how it feels.

Its so frustrating that they have said they will give me these daily injections but the policy is not to start until a heartbeat is confirmed - surely a positive test is enough to confirm the pregnancy!

Did you have tests to enable you to get the progesterone? What is the cleaxane for? i have read alot on progesterone helping to carry the baby but I have not asked for that yet.

I read up on the NKC tests end of last year after another loss then I lost my fight a bit and didnt follow anything up but I am seriously thinking now I must get tested. If they test positive is there a cure??

Thats sounding positive that your discharge is now brown in colour, one doc once told me they dont count the brown colour as a bleed as its old blood finding its way out and has lost the oxygen so its not counted as a bleed. Oh I really hope it means your baby is just settling in and making a bed and it will all settle for you. Please keep me posted. Its an emotional rollercoaster from day 1 eh.

thanks again for your quick reply. Its nice to know I'm not alone xx

 

[mandy1971]

Hi I discovered this thread through leec posting on a thread I started.
I have looked into nk testing endometrial biopsy. I contacted professor siobhan quenby via her email addres, she was the chief investigator for the recent nkcell study at liverpool womens hospital. prof quenby now works at warwick university and is setting up a clinic for biopsies in the coventry areal over the next few months.
I phoned up a local to me private ivf clinic and the specialist there told me over the phone that he did'nt think there was a need for me to waste my money on immune testing to see if I had nk cells as the ivf treatment for women who are older and have a history of recurrent miscarriage would include steroid therapy anyway.
Just a thought ladies...
here is her email address..
<[email protected]>

 

[lynnb]

Thank you so much for your kind words xx

Apparently its NHS policy to start injections at 6 weeks, antiphspholid is another name for Hughes Syndrome?? the blood clotting disorder.

xx

Have you thought about taking low dose aspirin to get you as far as starting the injections? I know it's a stupid questions & you've probably tried this but can't think of anything else.

Also a brown bleed is how both my miscarriages started.

As for me, My digital has gone up to 2-3 today at 15dpo and the pinkish watery has turned darked brown, only when I wipe. after a sleepless night and convinced it was all over I guess I have to remain strong and hope this might work out, I have never had this type of thing with any of my others so just trying to think it might be a good thing.

Hope you are all ok, Thinking of you all xxxxxx

Are you 100% sure about ovulation day, could this bleed be implantation? Keeping fx for you

 

[LeeC]

Hi Livinghope.

So sorry you had to find this forum and for your losses, my heart goes out to you during these difficult times.

I see you are in Scotland, I am in Glasgow so may be able to offer some advice.
Have you seen anyone for testing yet, I have heard of a couple of good obs based in Glasgow, and have appt with mine tomorrow.
I'm afraid with regards to recurrent m/c, I would say things are a little further behind here than in England, but that is just my opinion of course.

I can't believe you haven't been referred to specialist yet by your gp, although with my first 2 m/c's I was dismissed as being over dramatic and to go home and stop worrying as it was likely to be nothing!!!

It could be low progesterone, sticky blood or NK cells, these, in my humble opinion would be the main three that I've heard of and have read alot on this topic, and all are treatable.

The progesterone is pretty easy to get if you have a symapthetic gp, hell, if not, I'll post you some myself, it's taken on a can't do any harm basis.
I took 400 mg along with 100mg of aspirin in my last pg, but unfortunately it was ectopic.
This time I am asking for prodnisolone, gp won't prescribe for NK cells, so I am going to ask my ob tomorrow at the Royal in Glasgow.
I know they can also give heparin injections and if you call EPAS direct they will monitor you from 5/6 weeks in your next pg and can measure increase in hcg levels in blood to reassure you.

I hope some of this info is helpful to you and am sending you a big hug right now honey xxx.

 

[LeeC]

Mandy1971, that's great, I'm taking this bit of info along to my ob tomorrow xxx

 

[livinginhope2]

Hi & welcome, so sorry for all you gone through & are going through now But so glad you've managed to find your way here. The ladies on here are so friendly & supportive.

Don't know anything about antiphspholid syndrome but can you not change drs so that you get the injections? It seems so cruel that they don't give it to you until after HB seen.

Again so sorry about your losses [/QUOTE]

Hi Livinghope.

So sorry you had to find this forum and for your losses, my heart goes out to you during these difficult times.

I see you are in Scotland, I am in Glasgow so may be able to offer some advice.
Have you seen anyone for testing yet, I have heard of a couple of good obs based in Glasgow, and have appt with mine tomorrow.
I'm afraid with regards to recurrent m/c, I would say things are a little further behind here than in England, but that is just my opinion of course.

I can't believe you haven't been referred to specialist yet by your gp, although with my first 2 m/c's I was dismissed as being over dramatic and to go home and stop worrying as it was likely to be nothing!!!

It could be low progesterone, sticky blood or NK cells, these, in my humble opinion would be the main three that I've heard of and have read alot on this topic, and all are treatable.

The progesterone is pretty easy to get if you have a symapthetic gp, hell, if not, I'll post you some myself, it's taken on a can't do any harm basis.
I took 400 mg along with 100mg of aspirin in my last pg, but unfortunately it was ectopic.
This time I am asking for prodnisolone, gp won't prescribe for NK cells, so I am going to ask my ob tomorrow at the Royal in Glasgow.
I know they can also give heparin injections and if you call EPAS direct they will monitor you from 5/6 weeks in your next pg and can measure increase in hcg levels in blood to reassure you.

I hope some of this info is helpful to you and am sending you a big hug right now honey xxx.

Hi thank you x

I'm in Fife, not that far

We have had complete blood tests carried out and the only one that came back was the antiphospholid (sticky blood) which they said would prescribe the fragmin and aspirin. They said not to take aspirin until 6 weeks but I have been taking it daily, just doesnt seem to be enough.

Who are you seeing tomorrow? Is it a private appointment? How did you get your referral - sorry lots of questions x

Do you know what treatment is for NK cells? I have heard that its fragmin which is the same as I need for the antiphos?

I am def going to go to my GP and ask for progesterone, I'm going to ask again for the fragmin prior to conception! And if he says no I'll go back again and again. I'm 35 now and time is not on my side anymore so I feel that I have to fight x although yesterday I was saying enough is enough and I cant do this anymore!! Hormones!!

How do you contact EPAS?

Sorry for your losses and I really hope you get some answers tomorrow x

thanks for commenting xx

 

[smidgen]

Hi LivinginHope2

I'm in Fife too! I take it your tests have been done at the Vic? We got no joy from tests done by the recurrent miscarriage clinic there - they just said nothing was wrong despite having 3 miscarriages and an ectopic. I knew there had to be a reason. We ended up going down to see Mr Shehata in Harley Street and I was diagnosed with very high levels of NKCells. We had our first consultation with him in April 2010, after 3 cycles of his treatment protocol, I am delighted to tell you I am 30 wks pregnant tomorrow!

Good luck trying to persuade your GP to help. Mine was so dismissive, told me I was talking rubbish about NKCells and the steroid treatment etc - ha - how wrong was he!

If you need anyone to talk to, get in touch

Veronica x

PS - meant to say, Mr Shehata treats NKCells with steroids from ovulation, increasing dose on positive pregnancy test and also intralipid drips. He arranged for a nurse from private healthcare company to come out to my house to administer. I also had to take aspirin, vit d3 and progesterone pessaries daily. Came off all treatment by wk 20

 

[LeeC]

Hi Livinginhope.

Your local hospital should have an EPAS (Early Pregnancy Assesment Service), I'm very surprised your gp hasn't referred you there for a check up after your m/c's. I'll post you the link in a second, I'm sure there is one for all EPAS units in Scotland I have.

I am seeing Dr Rodgers for a follow up after operation for ectopic, there is also a Marco Gaudoin who runs clinics who I hear is very good in recurrent m/c.
I am going to ask my ob where would be the best place for you to go to in Fife and get back to you tomorrow.

With regards to the aspirin I have always been told to take it from BFP, I tried 75mg , then last time took it upto 100mg under supervision and my ob was aware of this.

With progesterone, it is best to start on day or just after ov, take it every day, then if you get a neg pt or get AF, stop taking it til next cycle and start again at ov, then once you get BFP continue generally for 12 weeks or so when placenta will take over.

Prednisolone is a steroid and is used for NK (Natural Killer) cells, in a nutshell, it's when your body (cells) sees the baby as a foreign object and kills it.
I haven't tried the prednisolone yet but I am keen to try this as another option.

I was referred ny my local EPAS unit, as my gp was pretty useless, and after my 4th m/c I was in pieces so the nurses at EPAS took pity on me and referred me to the specialist at the Princess Royal, the appointment took about 5/6 weeks to come through and we had our results back in about 4 weeks, everything was ok with dh and I, which is when I starting my own personal crusade lol...

I'm 37, 38 later this year, so like you, I feel like time is ticking, yep, I'm going to be asking LOTS of questions tomorrow.

Thank you so much and sending you lots if hugs, it's snowing here in Glasgow, must be cold in Fife xxx

 

[livinginhope2]

Hi LivinginHope2

I'm in Fife too! I take it your tests have been done at the Vic? We got no joy from tests done by the recurrent miscarriage clinic there - they just said nothing was wrong despite having 3 miscarriages and an ectopic. I knew there had to be a reason. We ended up going down to see Mr Shehata in Harley Street and I was diagnosed with very high levels of NKCells. We had our first consultation with him in April 2010, after 3 cycles of his treatment protocol, I am delighted to tell you I am 30 wks pregnant tomorrow!

Good luck trying to persuade your GP to help. Mine was so dismissive, told me I was talking rubbish about NKCells and the steroid treatment etc - ha - how wrong was he!

If you need anyone to talk to, get in touch

Veronica x

PS - meant to say, Mr Shehata treats NKCells with steroids from ovulation, increasing dose on positive pregnancy test and also intralipid drips. He arranged for a nurse from private healthcare company to come out to my house to administer. I also had to take aspirin, vit d3 and progesterone pessaries daily. Came off all treatment by wk 20

Hi Veronica

Congratulations! Thats fantastic news.

Yes all done thru Vic with no joy really other than the antiphos being positive but I know there is something else !! Basically made me feel like I was wasting their time - come on, 14 hearbreaks surely they would want to help eh, the last time I was told there was a new clinic being run and to contact them so I did and was told - oh you need to go through your gp as its a new referral for a new clinic!! I give up!!

How Did you contact Mr Shehata? Oh its so good to hear from someone with a positive story! Are you keeping well? It sounds like the best move you made was to contact him!

Sx

 

[livinginhope2]

Hi Livinginhope.

Your local hospital should have an EPAS (Early Pregnancy Assesment Service), I'm very surprised your gp hasn't referred you there for a check up after your m/c's. I'll post you the link in a second, I'm sure there is one for all EPAS units in Scotland I have.

I am seeing Dr Rodgers for a follow up after operation for ectopic, there is also a Marco Gaudoin who runs clinics who I hear is very good in recurrent m/c.
I am going to ask my ob where would be the best place for you to go to in Fife and get back to you tomorrow.

With regards to the aspirin I have always been told to take it from BFP, I tried 75mg , then last time took it upto 100mg under supervision and my ob was aware of this.

With progesterone, it is best to start on day or just after ov, take it every day, then if you get a neg pt or get AF, stop taking it til next cycle and start again at ov, then once you get BFP continue generally for 12 weeks or so when placenta will take over.

Prednisolone is a steroid and is used for NK (Natural Killer) cells, in a nutshell, it's when your body (cells) sees the baby as a foreign object and kills it.
I haven't tried the prednisolone yet but I am keen to try this as another option.

I was referred ny my local EPAS unit, as my gp was pretty useless, and after my 4th m/c I was in pieces so the nurses at EPAS took pity on me and referred me to the specialist at the Princess Royal, the appointment took about 5/6 weeks to come through and we had our results back in about 4 weeks, everything was ok with dh and I, which is when I starting my own personal crusade lol...

I'm 37, 38 later this year, so like you, I feel like time is ticking, yep, I'm going to be asking LOTS of questions tomorrow.

Thank you so much and sending you lots if hugs, it's snowing here in Glasgow, must be cold in Fife xxx

Yes I've been to EPC then was referred to the infertility clinic, absoultely no use! good luck tomorrow xx really hope you get answers xx its raining here in Fife, and very cold!!! xx

 

[smidgen]

LivinginHope

We werent happy with the treatment we got from the Vic either. They were so dismissive, especially when I told them we were going to London for further tests - they basically said I'd be wasting time and money!

Contact number for Mr Shehata: 0208 4019 928

His PA is called Cheryl. We had our first appointment at his Harley Street Clinic and we had all the other appointments at his clinics in Surrey - it was easier and less stressful going to those ones as our friends stay in Surrey so we stayed with them during each visit (10 I think in total).

His website address is www.miscarriageclinic.co.uk

There's loads of useful info and case studies etc on there.

I'm keeping well(ish) now - had terrible morning noon and night sickness up to 24 weeks though! I remember saying "sick is Good" when I first started being sick at 7 weeks - they say the sicker the better, good hormone level etc - However I began to regret saying sick is better - lol!
I've got a lovely big bump now - which I love but I took a sudden dizzy turn on Sat and it turns out I've now got labrynthitis - inner ear infection - which has made me vomit again! Never mind - the thought of holding my much wanted baby in my arms in 10 weeks makes everything i've been through so worthwhile!

Where in Fife are you? I'm in Glenrothes.