2nd mc in a row/help?

[Blossom]

Hi, i have just suffered a 2nd loss in a row and wondered what tips, treatments anyone can offer for helping to prevent a 3rd? Been reading about progesterone being a poss cause?? has anyone been prescribe this? or used a natural progesterone cream? any tips on increasing through diet?

i know you cant get a referral until you have had 3 but just wondered....feel at a bit of a brick wall with it and cant bear the thought of going through a 3rd before anyone will help us but at the same time want to start ttc again as soon as possible and do everything possible to prevent another.

Many thanks Debs x

[gemstone83]

Hi Debs

Really sorry about your second loss it is heartbreaking. It is so unfair that you have to wait for three.

May I ask how was your first pregnancy? I only ask as your daughter's weight is a little low and I wondered if she was early or your suffered any problems.

I have Hughes Syndrome which is a blood clotting disorder which effects the placenta and implantation and is diagnosed with a simple blood test. But only after 3 m/c's and will always effect my chances of live births.

Are you in a position to pay privately for a blood clotting test? It was about £125 for TEG test? This might put your mind at rest? Have you spoken to your consultant? Would they be willing to possibly start some cheaper investigations to put your mind at rest?

Sending big hugs

Gemxxx

[Blossom]

Hi Gem
Thank you for taking the time to reply its such a lonely time. Sorry to hear about your mc too, and glad you have found the reason behind it and hopefully you will get your bfp soon..how are you getting on?

I have been reading about the hughes syndrome..is this the same as APS ? What are the sympton of this? What have you been given or advised to do to ? Is it to take aspirin? or asprin and heparin inj?

As it happens i had a rough pregnancy with my little girl and yes your right her birth weight was very low and have never known why or that it could potentially have been connected to anything happening to me now?? She was born by emergency ceasarian at 38 weeks so not classed as premature but she was foot first breech too, i spotted and bleed throughout the pregnancy, had numerous early scans due to bleeding and hospital visits further on in the pregnancy due to bleeding etc abut no one ever checked blood levels they just kept saying she is fine the bleeding can happen sometimes so i never got to the bottom of it.

Would appreciate any info you think might help, i would be prepared to pay for blood tests, can the dr do these or do you have to be under a consultant as they wont refer me to miscarriage clinic until after 3 and i am not under a consultant

Many thanks gem, take care xx

[gemstone83]

Hi Debs

You really are not alone xx

Yes Hughes Syndrome and APS are the same thing. I had headaches as a teenager (which could have been down to the Hughes but might not). Most people are not born with Hughes and develop it later due to use of the pill or a viral infection can trigger you body to begin producing the anti phospid lipids. I am under a consultant and after my second she had a feeling I had Hughes and so tested me. Before the results came back I got pregnant and at 51/2 weeks they began me on 75mg of aspirin. We go to 12.5 weeks but at our scan baby had died at 10.5 weeks. I had always measured a week behind my dates and think this was due to beginning the aspirin too late. As baby never got to 12 weeks the NHS classed the aspirin treatment as a partial success and so I would not be prescribed anything more unless I had a 4th m/c. I read up and was not happy about this and so arranged to see Dr Raj Rai at St Mary's in London (I live in North Yorkshire) as he is the leading expert in the country and possibly even the world in APS. He disagreed with treating me solely with aspirin as any loss over 8 weeks he would class as treatment fail and so prescribed aspirin and heparin for my next pregnancy. With Hughes you have about 10% chance of live birth if no treatment is given. 40% with aspirin and 70-80% with aspirin and heparin which is not quite a 'normal' person but certainly much better.

I am a little unusual as from all the ladies I have met most have managed a successful first pregnancy and then seem to have problems.

It was not cheap about £250 for the consultation and £150 for the blood test where they actually found I need at least 150mg of aspirin to prevent my blood clotting too much. This was for a specialist TEG test which can not be performed everywhere as the blood is taken and immediately analysised and so you need to be in the same building as the machine. Just from getting the info about my blood still clotting too much on 75mg made me feel it was more than worth the money. The TEG only tests your clotting not the route cause. There are many other clotting disorders that can effect pregnancy.

There are other cheaper blood tests that can detect with ACL antibodies or ANA antibodies but you need two positives more than 12 weeks apart to confirm Hughes.

Personally I would advise any woman with two miscarriages to get tested for Hughes I believe the cost to the NHS is about £45.00 but privately I am not sure. Or if you live near somewhere that offers TEG testing you would know for certain if you had a problem and then could go back to the NHS for finding out why. I don't think to start with you would need to have a consultation just see if you can get the blood tests done. My GP referred me privately and I got the tests done within 6 weeks and this was over the Christmas period.

I would also highly recommend the Lesley Regan book - Miscarriage what every woman should know. She runs St Mary's in London and is the UK's and again possibly the worlds leading expert in recurrent miscarriage. Her book is very factual and not very emotional which I personally found a great help. She is campaigning for every woman who has two miscarriages in a row to get tests and the Hughes foundation is campaigning to get every pregnant woman tested for Hughes at their booking in along with the anti D test. This would take the cost down to £2 per patient and possibly save 80% of the still births in the country.

Sorry for the long post but I feel so passionately about recurrent m/c. I really hope you get answers and feel free to ask any other questions. PS if you get the tests done I would like it if you came back and told me how you went on.

xxxxxxxxxx

[Blossom]

Hi Gem
Thank you so so much for your long reply with all that information, i have found it very useful and now shall be definately looking into the hughes syndrome tests now...i had kind of convinced myself it might be a progesterone issue due to the pcos but after what you have said i need to look at this theory too and get the blood test done.

So sorry to hear that your treatment didnt work that time, guess the aspirin has to be there from the start of being pregnant. So when you nect fall pg do you call your consultant and then start you straight away on drugs or are u taking asprin now? I cant believe the % of the hughes without treatment its staggering. I am sure so many mc's could be saved if more awaness about these issues, i certainly didnt know half of what i have been reading about in the last week.. i didnt really look to much up on the first mc as you think its just a one off and "unlucky" but i think by 2 you really question what is going on..and the dread of it all happening again you just want to "fix" it for next time.

Have you started ttc yet, dont know if any use to you but i found the clear blue ovulation tests worked so would recommend them, both times i used them they ended in mc's but it got the timing spot on so from that point of veiw they were good as got pg quickly after the first mc. i didnt use them when ttc daughter and it took 3 years so looking back i wished i had.... Anyway might be no use to you but thought worth a mention as you have been so helpful to me. They are a little pricey but cheaper through amazon and its nice to see the smiley face when you get the ov surge. So i will be looking for for news on you to! Will be using them again when we start trying again.

Of course i will let you know how we get on with any tests results, i have got drs next week and if cant get them done on the nhs will ask to be referred privately. I really want to know if there is anything causing the mc to happen as its heart breaking. I am sure we will both get our babys soon...will keep fingers crossed.

I know doubt will be back with a few more questions once i have looked into the hughes s, there is so much to read about all this and treatment out there that the drs arnt doing anything about it which i find staggering and like you say if they did blood tests at the begining it could solve a whole lot of heart ache for many couples and also bring the cost down for the testing which makes sence.

Also have noted the lesley regan book and will pick a copy up sounds like its very informative too.

Thanks again and keep you posted

Debs xxx

[espoir]

Hi Debs, so sorry to hear of your loss. I had a chemical and a M/C last year, as well as a failed cycle of IUI, so was also wondering what was going on. In the first two 2ww, in the second week I had moments where I was feeling really cold, but it was not due to fever. As I have known thyroid issues, my gynaecologist thought that that was the problem - yet my levels were in the normal range. However, for the M/C, the level was slightly low, and I think that was the cause of that one. I think low progesterone being the cause of your M/C is probably unlikely - I was on progesterone supplements on the cycle I had the M/C, and while it delayed the actual M/C, it didn't prevent the foetus from not developing further (probably stopped around 5 weeks - I had the M/C at 9). I did have blood tests done after the second/failed IUI as I was concerned that I had antibodies, as I'd developed PUPPP at the end of my first pregnancy, but all was normal, so in my case it was likely my thyroid. I would def agree with getting some tests done at this point to see if anything shows up - it's too heartbreaking to keep trying without success, especially when it is so difficult for us ladies to conceive in the first place. I wasn't prepared to try a 3rd time without first knowing why the first 2 IUIs had failed, or at least being able to rule out most things as being the cause.
Are you by any chance on Met, and have you been checked for vit B12 deficiency?
Take care and hope you'll be able to get some answers soon xxx

[espoir]

Just wanted to add - there is no harm in asking for progesterone supplements as a precaution next time - I was taking them during the 2ww, and then would stop, but for the 3rd cycle the plan was to continue taking them for the first trimester.

[Blossom]

Hi espoir thanks for your reply. Sorry to hear abour your losses too. Interesting you say about thyroid i was going to aks for that to be checked too. No i am not on met either, does this help with conceiving? Is it something once your on it you stay on forever? Havent had any blood tests done for ages so sounds like i need to be asking for a full blodd check at least as a a starting point. Thank you for your reply.
Will update when i hopefully find some answers. I hope it doesnt all take too long ...Debs xx

[espoir]

Hi Debs, I am on Met to help conceive as I have some insulin resistance. You can come on and off it, but for me it helps in general to somewhat regulate my periods (I still have long but regular cycles) and I think it also helped me conceive while having treatment. The reason I asked if you are on it long-term is that it can cause a Vit B12 deficiency - I wasn't aware of this, and by the time it was discovered, my Vit B12 levels were very low, which can cause some problems and permanent nerve damage.
I hope you will have some answers soon, or at least be able to rule things out, and of course that you'll have your BFP and a healthy pregnancy soon xx

[missus griff]

Hi Debs, so sorry to hear about your losses.

I am another st. Mary's fan here as I went here and saw Raj Rai too. You can get an NHS referral after 3 consecutive m/c's or you can get referred and pay privately. I went down the latter route as there were hospital politics going on at the time.

I had loads of tests done and it was the TEG test that flagged up a problem for me too with blood clotting as well as being deficient in vit D which can affect egg quality. All of the others were fine. DH & I had chromosome testing done before at our local hospital luckily as that was quite expensive.

Like Gemstone said, they take bloods and test them immediately. I think it is only St.mary's that does the TEG test...might be wrong though.

I had 3 m/c before going there, then had all the relevant tests. I then conceived again and commenced treatment of progesterone pessaries & clexane...I unfortunately miscarried again and was devastated as pinned all my hopes on it working. Anyway, Raj Rai was brilliant and wanted me to either go there for a D&C or mc at home and get the tissue to London for testing ASAP. He needed to know what went wrong as different treatment may have been needed. Anyway, long story short we got the tissue up to London to be analysed and they found there was something wrong with the fetus, so nothing would have helped the pregnancy.

So then we had to wait again to conceive, start the treatment and hope for the best. I also had to go back to London after having a 6 week scan to repeat the TEG test again to make sure nothing had altered.

I then went on to have a very normal pregnancy & delivery.

As you can see from my ticker...I have since had another beautiful little girl. I used the same meds as before.

There was a time I thought it would never happen...even all the way through my first pregnancy and I cried with fear everyday. To have two is unbelievable. Mr Rai is a hero in our eyes!

Best to get tests done before taking this and that though. I was told I was not to take any form of aspirin as it would have hindered implantation In my case. Was prescribed high dose vit d3, but had to stop if pregnant, was also taken off metformin as bloods there indicated it wasn't needed. Just saying as there is so much out there and could have an adverse effect.

Good luck xxx

[Blossom]

Hi
missus griff just wanted to say sorry for not coming back on here and replying to your reply, i didnt have a notification and have only just stumbled across it again, thank you so much for taking the time to reply. You have a very encouraging story and lovely to hear you have 2 children now. Glad the treatment worked for you

i did say i would pop back on and update with how we were getting on, i carried on with extensive research about recurrent miscarriage and decided to go and see dr shehata at the miscarriage clinic as didnt want to wait for a long NHS referral to find out if anything wrong. It was difficult to know where to go as st marys do the TEG test you both mentioned but not some of the other tests that the other place does. i have had the tests done now which included the killer cells test but have all come back normal. .good they normal but was annoying as we still dont have a reason for our miscarriages!) However, he did pick up a few other factors,low thyroid so am now on thyroxine and he has also prescribed metformin to help with the long cycles and pcos, low dose asprin and high dose vit d which hopefully should all help! Was hoping this was going to be our month as this was first cycle after being seen but taken a test this morning and its neg, will test again tomorrow as maybe a day or two early.

Gem- how are you getting on? are you having any luck with clomid yet? i hope you are getting on well

Debs x

[gemstone83]

Debs - Thanks for keeping us informed. This may sound odd but I am glad they found something wrong. Your thyroid is essential for pregnancy and I am wishing you all the very best if not this month then soon.

I have only just begun back on the clomid so fingers crossed for this month. We have 6 months and then it will be IVF I am afraid as I will have used up all my clomid allowance. We are also looking into adoption just to keep all our options open and not make me feel too pressured and stressed. Plus adoption is something we have always wanted to do anyway.

Lots of baby dust to you xxx

[Blossom]

Hi gem - thanks for your reply, sorry it tok a while to come back and update you, its just been a whirlwind of a few weeks with having the tests and going back for results. yes i was surprised about how important the thyroid was for pregnancy until he said my result was abnormal because the GP had marked this test as normal!!! So that could well be a contributing factor, have got another blood test booked for next week to monitor if the dose needs to increase. Onwards and upwards for trying again this month! hoping met might shorten the cycle length as they are 40 odd days long so seems such a long time away.

Good luck for this month then will be thinking of you. i am wondering if they will prescibe clomid for me to to help so i will be looking out for you to see how you are getting on. Sure you will have your well deserved baby very soon...fingers crossed for you....Fingers crossed for us both!!

keep us posted, baby dust to you too
Debs xx

[sammykins]

Debs - just to say that De Shehata was my consultant and I found him excellent. He really knows what he is talking about (he was the one who told me to carry on taking met throughout both pregnancies). I only saw him because he works at my local hospital, but just wanted to say that he is great, and I hope he can help you xx

[Blossom]

Hi Sammykins - thank you thats great to hear - i am intrigued now sorry! so did you have both your children with the help of him? Did you ever get to find out what caused your miscarriages through testing?

I too have found him great so far and really hoping his treatment will work for us. He was very reasuring and knew what he was talking about and was very confident in the use of met and the other things prescribed for helping pregnancy this time so keeping fingers crossed. Did he prescribe anything to you?

Debs x