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Miscarriage/pregnancy loss

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

59 replies

annaif · 11/02/2016 14:58

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

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zarala · 09/03/2018 14:10

Hi ladies
I know this is a very old post but I have stumbled upon it as I am trying to decide what to do.
Just had my 3rd MC (2nd MMC) and I feel like the only thing that will help me get over this is finding out what's wrong, getting pregnant and staying pregnant.
Why is it so difficult?! I'm 36 in April so really feel the clock..

@annaif how are you? And has anything transpired from dr Thum? Hoping whatever the outcome you are in a good place right now!
@333LuLu I hope your pregnancy was successful ?!


My gp said they can refer me to UCLH- should I bother? Should i bite the bullet and see dr S privately? Or dr Thum?
I am in north London so Epsom is quite a mission!

Any advice would be welcomed ! thanks x

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FTFS · 09/03/2018 14:51

@zarala Hello! I've not posted on here before, usually a lurker, but saw your message and wanted to reply.

I'm in North London too and I've had two miscarriages over the last year (one at 23 weeks and one at 8 weeks). I've now been referred to both Lesley Regan at St Mary's in Paddington and Dr Shehata - I was keen to see both given they both look at slightly different things (Dr Shehata looks at NK cells where Prof Regan doesn't).

My GP was able to refer me to both and it took about 3 months to get an appointment on the NHS. We actually ended up seeing Prof Regan privately as we realised our Bupa covered her. Unfortunately, Bupa didn't cover Dr Shehata so we've continued to see him on the NHS. We had all our blood tests done with him at our first appointment and our results appointment is in early May, which is about 3 months after our first appointment.

After two miscarriages we're really keen to be pregnant again so it's been difficult to hold off on trying whilst we wait for all the results but hopefully it will be worth it. We decided to see both Shehata and Regan and get all tests done so we know what we're dealing and hopefully stop it happening again. I think if you can get a referral to both then I would recommend doing so.

Feel free to inbox me if you want to chat any more - I made it really easy for my GP when I asked for the referral and took all the info he needed to do it there and then. Happy to share details if you want them!

Best of luck xx

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zarala · 09/03/2018 19:31

@FTFS thanks so much for your reply
And I'm so sorry to hear of your losses. A second trimester lost must be so heart wrenching I can't even imagine- so I'm sorry you've been through that.
My only issue with the NHS is that the referral times are quite long!
I spoke to my GP today and he basically told me that in a few weeks (about 4-8weeks) I would get a call from someone who will outline my options of clinics and then once I know which clinics, they'll give me some time to choose and then they'll refer me after which there will be another wait of about 3 months depending on where I choose to be referred to!
This just sounds like such a long process!
I asked him if he could just tell me the options now and he said no! He said as I've only just had my miscarriage this week they recommend at least a month of recovery and emotional space!
So yeah that is really annoying and has basically spurred me on to call dr Shehata - I have my first consultation with him end of april.
I may be a little too impatient but I am going to give myself 3-4 months break of TTC. I want to get tested ASAP and figure out an action plan and get back on the game soon. I really feeel like that's the only way I will get over this and I really don't want to be sat around for the nhs to get paperwork in order
Sorry I'm a bit annoyed today after that phone call. I didn't expect to have to wait over a month just to be referred!
Did you go through the same malarkey?

I'm a bit scared of dr S fees but he is so highly spoken of that I just called! Haven't told OH yet! Ooops

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FTFS · 09/03/2018 22:45

@zarala Aw thank you. I'm so sorry to hear about yours too - I think any loss is hard, no matter when.

Sorry to hear about the frustrating feedback from your GP too. I don't really understand the 4-8 week wait - that's so annoying! Completely understand where you're coming from about just wanting to be pregnant and have a successful pregnancy. I ended up doing my own research and was quite forceful with my GP to get referred. We were still being told that you can only have further tests after three miscarriages but when I did my own research, I found that we could have been referred after our first one as it was a late loss. We're really frustrated at the time we lost and the fact we had to go through a second loss that could have been prevented. You definitely shouldn't have to wait to be referred though - if your current GP won't budge then try someone else. You know what's best for you and if being proactive and moving forward with tests, etc is the right thing for you then they should support that.

Having said that, if you can afford to see Dr Shehata privately then I definitely would. The NHS does take so much longer. We managed to have all our tests and will have our results from Prof Regan privately before the date we got from the NHS for our first appointment with her. As I mentioned before, we're also having to wait ages for our results appointment at Epsom when the actual results would only take a few weeks. I'm calling them every few days to see if I can get in earlier on a cancellation!

In terms of Dr S, as it was NHS we didn't see him just someone in his team so I can't really comment on what he's like. Reviews seem pretty mixed online but he seems to be pretty successful so worth a go! His work is based on a guy called Dr Beer - you may be aware already but if not then read his book 'Is your body baby friendly' to understand a bit about what he looks at.

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FTFS · 09/03/2018 23:29

@zarala oh and one other thing I forgot to say, I think Dr S always starts everyone on the same vitamins so might be worth starting them now. I've attached a pic of his treatment programme with the details x

Recurrent miscarriages/Is Shehata the right choice? Desperate...
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zarala · 10/03/2018 09:27

@FTFS
Wow thank you so much for sharing that treatment plan
It sounds like a lot!
As someone who avoids even taking paracetamol- I am a bit scared!
I'm ok with suppositories (grew up in France where they're de rigeur!) but the injections!
Eeek!

What is the herepin for? NK CELLS? or something else...ah!

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zarala · 10/03/2018 09:30

@FTFS
I am still taking pregnacare max which is what I think captures most of it- I will get the extra vitamin D

Does he not put OH on a similar program? Does he test them? I've read antioxidants can help the quality of the sperm dna- getting OH a sperm comet test next week

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FTFS · 10/03/2018 10:24

@zarala We weren't recommended to do any tests on my husband as we are able to get pregnant so they said it's unlikely to be anything sperm-related.

A common reason for recurrent miscarriage is how your blood clots so a few of the tests that Shehata and others do look for blood clotting disorders. Heparin is a blood thinner so I think if you are found to have any blood clotting issues then they'll put you on Heparin too (this is why he gets everyone to take a daily baby aspirin as part of the pre-treatment plan too). His treatment plan for NK cells is pretty intense - and not really supported by some other experts in this area like Lesley Regan- however, he does have a good success rate. For me, autoimmune diseases run in our family so I'm interested in his work around autoimmunity and NK cells. I'm not sure I'd definitely go ahead with his treatment plan which is why we've also seen Lesley Regan. I'm going to wait and get the results from both of them and then decide on the best course of action from there.

Aside from the NK cell theory, Shehata and Regan tend to look at the same other underlying issues and run similar tests so you may want to consider seeing Lesley Regan too/instead. I've found her great so far - a bit scary / school ma'am-ish but I quite like that she's so direct and to the point. We have our results appointment with her on 26th March. It is about a 3 month wait for her on the NHS - if you go privately I think it will cost just over £2k for all the tests, etc

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zarala · 11/03/2018 08:31

@FTFS
Thank you so much for the information- it's really helpful

We also haven't had any issues conceiving so far (praise jah!) but I read that the dna composition of the sperm can also be responsible for 40% of miscarriages- not sure how true this statistic is- but I booked OH in for a SpermComet test. You can do it directly with the lab and it's about £250 - then depending on the morphology of the dna they will recommend certain supplements and anti oxidants that help produce healthier sperm. Sperm takes 3 months to mature before being released so I decided we should cover all bases before TTC. Also I want OH to stop smoking anyway and this might convince him (although he is only on 2-3 a day now but still...)

Good call on getting 2 opinions.
I'm going private with dr S as I'm impatient and don't want to wait. I'll look into regan- sound like a good plan getting 2 opinions.
As they both test for the same thing, do you think regan would accept test results from dr s? Or would she insist on doing her own tests?
I'm also considering quenby but that's even more of a mission in Coventry.

I find this whole thing such a minefield
I don't want to just throw money at the problem because even if we follow some genius plan to "fix" whatever the issue is, there is still always going to be that risk that we get the wrong egg or whatever and boom another MC. Like they can't guarantee a successful pregnancy no matter what!

But I guess at least we'll have eliminated all other risk and should just have faith
At the end of the day that's all we can do -stay positive and our little rainbow babies will be in our arms soon fingers crossed

Good luck with your test results- I hope everything goes well! Keep me posted on your journey! Who knows maybe we will both get lucky and have healthy pregnancies at the same time! I feel like we're on a similar timeline!

Where are you in N London? We're in Kentish Town...

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