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Recurrent miscarriages/Is Shehata the right choice? Desperate...

(51 Posts)
annaif Thu 11-Feb-16 14:58:40

Hi everyone

I have been trying to follow one of the existing threads on Dr Shehata's patients but it seems that none are accepting new messages.
I have an appointment with him on the 22nd of February and I am still unsure as to whether he's the right person to see. I have read people's experiences with Dr Quenby, Dr Gorgy, Dr Taranissi and Dr Yau Thum and I am still in two minds about who to see.

The issue with us is slightly complicated which is why I don't think that a fertility/IVF specialist will be the right choice.

We have a healthy 4 year old boy who was conceived spontaneously and I had no problems whatsoever with my pregnancy with him (being 35 at the time)
However it took us 15 months to conceive baby #2, which we lost at 20 weeks for yet unexplained reasons. I have since lost 2 more pregnancies around the 9 week mark, both of whom gave us good early scans with heart beats, both of whom were conceived relatively quickly.
I have been seen at St Mary's already and have tested negative for all their autoimmune, blood clotting testing; did a hysteroscopy (all clear), a 3D SIS scan (again clear) and a ovary reserve/follicle count which appears to be quite high so no problems there. My husband's semen analysis appears to be normal too.

Only recently and by my own insistence to see an endocrinologist, I discovered that my thyroid function is abnormal and was diagnosed to have an auto immune compensated hypothyroidism, so I have been put on 50mcg of thyroxine daily, selenium and folate. Having said that, my TSH levels were pretty normal during the last pregnancy and before then so I am not entirely sure that an endocrinology related problem may have caused the miscarriages, or whether the consecutive pregnancies messed up my thyroid.

Having said that, I am turning 40 in a couple of months and the last consultant that saw us in UCLH basically said that "we'd better get on with it and fast" as time is not in our favor- if we want to have another child. Incidentally, there are no more tests offered by any NHS hospital/clinic in London that I haven't done and that they can refer me to do....So looking into Natural Killer Cells is the only thing left to do- privately.

We are totally depleted with the 3 year vicious cycle of ttc, miscarriages, investigations, more ttc, more miscarriages and zero confidence that any future attempts are going to be successful- given my medical history and age.

Someone who has been treated successfully by Taranissi said to me that since conception is not my problem, I shouldn't be looking in any of the "top guns" of the IVF private clinics and that I should really be focusing on miscarriage specialists, such as Shehata or Quenby.
But on the other hand, everyone seems to be looking into the NKCs theory and to be doing different sort of testing on it....

Apologies in advance for the very long post by I am slightly at my wit's end and very lost as to who to see privately- as neither time nor money is of unlimited supply! My husband has pretty much given up on the idea of another attempt so I would need to have pretty good arguments to convince him to give it another go....

Really looking forward to hearing from somebody on this.

Thanks ladies

Anna

SamMac2016 Wed 24-Feb-16 15:39:46

Hi Anna

I am sorry to hear about your losses and understand how you feel about being at your wit's end.

I would say that having an abnormal thyroid function is a good enough reason/ argument for further investigations. The NHS tested me for autoimmune also, thyroid, thyroid antibodies and said I was negative for all. However in a recent conversation with my IVF doctor, where I told him the thyroid antibodies result he said I was slightly above normal and recommended I go on thyroxine!

It is totally depleting and confusing with no clear advice from any one doctor given.

With regards to which Doctor to go to I too would agree that IVF isn't what you require, it is further investigations into your immune system. A good book to read, which you may already have read is "Is Your body Baby Friendly" by Alan E. Beer and Julia Kantecki this book helps to explain a bit more about the immune system and NK cells. There is so many conflicting opinions among the medical world and this book explains things clearly and cuts through some of the conflicting opinions. Dr Beer mentions Dr Shehata and Dr Taranissi in his book as supporting the NK cell testing, which I think is a good sign. On deciding which one to go to out of the two, I would read up on both there websites and case studies and go with your gut instinct. I am booked to go to Dr Shehata in March, but am also undecided as to whether I should see Dr Taranissi, that's how I came across your blog. Perhaps even sending an email to both clinics might help you to reach you decision?

I too am in the same boat as you, having suffered 5 miscarriages and the last miscarriage in Jan was through our first round of IVF, where we had 2 embryos put back and saw a heartbeat of one. Unfortunately at the second scan at 9 weeks no heart beat and the second embryo was ectopic. I feel we don't need to go through a further round of IVF because conceiving is also not our problem, I seem to struggle to get beyond 8 weeks. My mission is to simply find out what is wrong with the stage between 6-8 weeks because something is going on. There is that risk that I pay to go for these tests and nothing comes of it, but having looked a bit more closely into my family medical history and now having a slightly raised thyroid antibody result, my gut feeling is that I should embark on these tests.

I hope that helps for you to reach a decision and as everyone keeps saying to me don't give up hope.

x Sam

annaif Wed 24-Feb-16 19:50:53

Hey Sam

Thanks for reading my post and replying to me- you're the first since I posted! grin

I have actually seen Shehata a couple of days ago now and have started the immune investigations with him. Due to see him again in a few weeks time when my results are back (actually, a day before you see him!) and to discuss more specifically which treatment plan I should be on. He did give me a lot of info and actually did scare me a bit with regards to my 20 week mmc; but on the plus side for you especially he said that he easily treats women with lots of 7-9 week losses and has the best success rates with them (the more difficult patients are those with late losses like mine and those with only chemical pregnancies and no further conception)

He seems to think there's a link between my late loss and the two 8 week ones- although they vary massively in gestation. He actually came across quite understanding and sympathetic which I didn't expect. He's also very confident of course and does consider himself to be the top of them all, slightly berating other clinics and hospitals. (I don't think he has St Mary's in much regard though it's supposed to be one of the top clinics worldwide!)

Basically he wants to bring my thyroid levels down to a very low "normal", lower than the lowest acceptable figure of the range and intends to manage my antibodies with the use of steroids. I am terrified by the prospect of hideous side effects but see very little choice at this point in time.... I think he's the most aggressive of them all in terms of how early he starts the steroid application (from ovulation as opposed to a bfp)

I was also told that he's Taranissi's student?!

Anyway, I have heard really positive stories about the ARCG and Taranissi's work too (though apparently you don't get to see him personally) and someone recently told me that his clinic also treats and follows naturally conceived pregnancies too, not just IVF.

I know what you're saying about NHS advice and how bonkers it sometimes is; it's like they're stuck in '50's with regards to their attitude on rmc and the advice they give.
If I had a penny for every time I was told to try again, by all the consultants I have seen... It's almost criminal I think, to encourage women to keep trying like it's simply a numbers' game (my OH called it the "pregnancy Russian roulette"!) without offering proper thorough investigations and management....

I hope you get some answers with Shehata, keep me posted about how you get on with him. And good luck, hope this is our year!

There's a lot more going on another thread nick named "the pred thread"- lots of Shahata's patients there too
X

SamMac2016 Thu 25-Feb-16 11:25:44

Hi Anna

Thanks for your reply and further information on your visit to Dr Shehata. I am glad you made a decision and went with it, because you can feel completely lost at times.

Hopefully the side effects with the steroids won't be too bad and you are on them for such a short period and managed with them.

Reading through all the forum's there does seem to be quite a lot of unsatisfactory comments about St Mary's. In the book I mentioned, one of the client's case studies was from a nurse who actually worked at St Mary's but decided that pursuing treatment elsewhere was more effective which was very interesting.

Thanks for the link to the "pred thread" will take a look at that.

Good luck with your results and hopefully this will be our year for success!

x

missmachete Fri 26-Feb-16 08:46:29

Hi,
I am new here and I do not know yet how mumsnet works I just wanted to say that I've just shared my success story after 3 miscarriages and 2 ectopics (i've opened a new thread) and I just wanted to support you and wish you all the best...

Dr Shehata is the one who helped us smile?

annaif Fri 26-Feb-16 15:24:20

Congratulations missmachete!
This is such great news and so optimistic and inspiring for the rest of us.
Could you send me a link to your new thread? Is it under the same category as this one?
All the best with your little one xx

missmachete Fri 26-Feb-16 16:43:18

Hello,
Thank you!
I hope you all, ladies, will post your happy stories soon xxx
Here is a link:
www.mumsnet.com/Talk/miscarriage/2579384-3-misvarriages-2-ectopics-multiple-failed-fertility-trearment-but-we-still-made-it-My-story-of-happiness-x

Not a very long one, honestly I always thought it is gonna be the longest story in the world but I just could not find words.

333LuLu Tue 08-Mar-16 22:24:52

Hi, Ive had 5/6 early mc. I've been to see prof. Quenbys clinic. They are lovely, very open and frank about their thoughts and diagnosis. The nk cell test was around £360. My cells showed in the normal range. Ive been to herts fertility centre (nhs), Oxford fertility centre and coventry. The thing about coventry that sticks in my head is they did say people have ivf to get pregnant, i dont have a problem getting pregnant. They said pgs ivf will not increase chances of it working either. I've got one more try with pro and clexane and then I think I'll be down the autoimmune and thyroid function next.... good luck.. I'm off to read miss machetes post now...

333LuLu Tue 08-Mar-16 22:26:13

Forgot to say I've been referred to st Marys by my accupunturist... so was gonna transfer there...

annaif Wed 09-Mar-16 09:25:54

Hi Lulu thanks for writing- I have heard all sorts of lovely things by many Coventry patients. I guess given all the publicity they have received recently with their stem cells research, they must be driving patients away!

One thing though: how can an acupuncturist refer you to a RMC clinic? I got referred to St Mary's twice by my GP (I was actually there yesterday for a follow up) but certainly not my acupuncturist who has no medical input/authority! It will be interesting to hear whether it works actually, I have been doing acupuncture to assist fertility and normalise hormones too, that's how I managed to get pregnant second time around, after 18 months of trying

x

333LuLu Wed 09-Mar-16 19:02:18

Sorry phrasing... they've recommended I get referred to st mary's. Yeah fingers crossed accupunture works (even if it just helps me lose weight). X

ifigoup Wed 09-Mar-16 19:12:39

I found St Mary's worse than useless and had generally horrid experiences there.

I can't recommend Profs Quenby and Brosens at Coventry highly enough - both so wise and humane and interested in you as an individual. I'm not out of the woods yet, but am currently 26 weeks, which is a lot further than I've got with any previous pregnancy.

333LuLu Wed 09-Mar-16 19:36:24

Ooh 26 weeks, can only imagine how you feel... i have everything crossed. Did you have nk cells? I don't... i have one more try on progesterone and clexane and i'm going back to Prof brosens. I am paying privately and going nhs to try and speed things up as I could only go so far with nhs in herts as my bmi is 33 and I have a step child... so would have to pay for ivf. Then found out from prof brosens it's a sales pitch from ivf clinics that tell me i need ivf. I've now moved to bucks so will get referred elsewhere... so need to decide whether to goto st mary's, oxford, or shehata. I trust prof. Brosens so won't give him up...

ifigoup Wed 09-Mar-16 20:16:29

No NK cells. They didn't find anything untoward with their tests, but because of the timings of my earlier mcs they suspected a placenta problem and superfertility. The progesterone is meant to help with both of those (initially suppresses fertility, but also supports development of the placenta). I was also on clexane until 12 weeks.

333LuLu Wed 09-Mar-16 20:17:37

Hi anna if sorry I didn't realise this was an old thread... I'm a bit tired at the mo and new to this. How did the appointment with shehata go?

333LuLu Wed 09-Mar-16 20:35:58

Oh it's amazing what they can do! I do find it all very interesting. You'll have to keep us posted it, does look like it's cooking nicely! X

annaif Thu 10-Mar-16 15:09:20

oh no, I wrote a huge reply earlier today and it all got wiped out of the system somehow!
Anyway ifi congrats on the pregnancy, are you a bit more relaxed now?

Shehata's app was ok, I think I was a bit intimidated by the amount of blood that was requested and the cost of the tests but I suppose that's what puts a huge number of people off seeing him privately. Tests and repeat app due on the 21st of the month so will see if I come up with high NK cells or not.

Not sure if you've been following the news on Tuesday, Coventry and its team were all over the headlines about their pioneering stem cells' research! Apparently high uterine NK cells (different to the ones Dr S is looking at) are a symptom of a more profound underlying cause which is to do with faulty stem cells in the placenta.... Anyway, without getting too technical about it, they announced that they are now much closer to solving a very large amount of the previously unexplained rmc and give the right treatment plan (not just steroids and progesterone, but some other meds too)

I went berzerk reading all this and wanting to get all bases covered, I managed to get an appointment for tomorrow. So will be doing the trek up to Coventry to get their uterine biopsy and scratch. Fingers crossed it all goes well, can't really handle any more "discomfort" down there confused

annaif Thu 10-Mar-16 15:12:33

Also 333LuLu , I couldn't agree with you more with regards to St Mary's- they may have been hot stuff 20 years ago but their current take on RMC is so obsolete nowadays - especially in comparison with that other people/centres are looking into with regards to more complicated connections between RMC and auto immune disorders/NK cells/etc.
I find it shocking that they chose to ignore it but they are an NHS hospital so more conservative in their approach....

ifigoup Thu 10-Mar-16 15:15:51

Yes, I'm feeling well apart from SPD. My stats and the baby's all look boringly normal.

Yes, it's great news about the coverage of the Coventry team. Really well deserved. Hopefully their theories and treatments will soon become a lot more mainstream.

333LuLu Thu 10-Mar-16 21:15:36

annaif if you get this in time when I went for nk cell test I am a wimp... i should have taken paracetamol. If you have low pain threshold down there (I'm not good with a smear or wax now..) take a couple a little while before you go in. Good luck x

333LuLu Sat 19-Mar-16 22:06:44

Heh how is everyone doing? I've just been researching immune tests. Has anyone been told much about the treatment? Some of them I'm not sure I'd do they don't sound very safe... Also if I've had 5 early mc's could it be chromosomal. I'm also now wondering who to ask to be referred to it st. M's isn't great... feeling confused... prob doesn't help that testing time is rearing it's head again...

333LuLu Sat 19-Mar-16 22:08:10

Oh gosh writing on a phone is so difficult with my dodgy fingers! I mean wondering who to ask to be referred to if st. Marys isn't great

annaif Mon 21-Mar-16 09:54:32

Hi 333LuLu
I am seeing Dr S today to get my blood test results and talk about treatment plans depending on what comes out of them. Needless to say I woke up in an absolutely foul mood with no appetite and I think my stress levels are going up up up!

I did do the scratch at Coventry a couple of Fridays ago too, I have to say it was quite bearable (but then again after a 4 day long labour with my only living child, a 20 week delivery (first mmc), a D+C (second mc), an EPRC (third mmc) with local anesthetic, a SIS scan with local and a hysteroscopy with sedation, this was like a walk in the park for me!)
I have also researched briefly side effects of the meds given but stopped myself as I know that should we decide to proceed with treatment, we should literally take a leap of faith and overly analyze it as I am sure we will be put off if we do.
My DH is terribly worried about side effects to me (esp in case the treatment doesn't work) and even worse, side effects to baby (IF we are lucky to conceive again and IF we are luckier to carry to term/bring home a living baby)
I just want to bury my head in the sand for the moment tbh
I don't have anything positive to say about St Mary's as they didn't really help me much and also didn't support me through my diagnosis with auto immune hypothyroidism.... So now I am between Dr S and Coventry, both paid out of pocket (ouch big time)

I have heard very good things about the Lister clinic, Dr Gorgy and also ARCG (esp if IVF is involved)
Having said that, I think they are all private (and pricey)
Not sure how much help this is hmm
Hope everyone is doing well?
x

333LuLu Mon 21-Mar-16 14:00:45

Ah bless you. I had a bad day on thurs new acupuncturist while mine is away... he's a bit to real and analytical ended up with a stinking head ache.

Chin up, have a cup of tea and a you'll be fine today (you seem very strong, normal to have nerves). Keep us posted x

annaif Mon 18-Apr-16 16:30:23

Hi Lulu - how are you?

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