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

[annaif]

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

[zarala]

@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...

[FTFS]

@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

[zarala]

@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

[zarala]

@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!

[FTFS]

@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

[FTFS]

@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.

[zarala]

@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

[FTFS]

@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

[zarala]

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

[trinabosein]

Dr Shehata any day..i posted the following in another thread but reposting it here

I have had direct experience with Dr Shehata and can say one thing..absolutely brilliant..i had 3 miscarriages all within 10 weeks from 2011 to 2014.I finally decided to go to Dr Shehata and the first thing you will notice about him is his confidence and his straight talk. He just told me leave it with me I ll handle it..you go and enjoy and don't stress about your past miscarriages..and yes he handled it well..i was diagnosed with elevated NK Cells..started his medicine routine and now I am a proud mom of a 14 month old son jumping around like a monkey and not even letting me cook read eat..but all thanks to Dr Shehata and his team..

[annaif]

Hi Ash good to hear from you and thank you for the words of support.
I can imagine how much of a toll all the mc's have taken on you- and it's true that sometimes age is irrelevant with the outcome.

My worry about mine stems from the fact that all the consultants I have seen (Dr Rai in St Mary's, Dr Shehata, Dr Thum at The Lister and Dr Webber at UCLH) make consistent reference that my mc risks have increased and are on average 50% purely on age alone.
Combining this with what appears to be an underlying auto immune response to pregnancy, it's not good news at all. We have some tough decisions to make as to whether to keep going or pack our boots on this one....

I hope you feel better emotionally, physically and psychologically :)

[Ash77]

Hi Anna,

I am In very much same boat as you. So you are not alone.

My first preg was cheese cake no problem and had a boy who is 6 years old. Past 3.5 years we have been trying for our second child and have ended up in 6 miscarriage. Recent one is in Feb this year. I have seen shehata after my 5th miscarriage and I was diagnosed with high NK cells.. I was on usual medication which is vitamin and progesterone , pred etc... After 3 months which is in Dec 2015 tried again and in Jan I was pregnant but.. It was all messed. Until 8 weeks my hcg didn't go up so ended up waiting then it shoot up to 1000 then to only miscarry again.

Apart from 1st MC at 11weeks all others have ended up by 8-9weeks.

Finally after Feb we decided to give up and focus on my work which i haven't in last 3 years.. And me and my husband have taken this 2nd child thought from our mind.. But surely when I feel confident and emotionally strong we will try again.

But today I just googled and found your blog..

Age is not an factor completely.. I had my first one when I was 24 and now I am 31years.

We spent at least 3-4K with shehata .. Please let me know your journey with dr thum.. So whenever we are ready again we can thk.

For now I am just go using on my health and not thinking about anything else.

Thanks for reading

[annaif]

Thank you for your kind words ladies.

I don't think it would be politically correct for any of the consultants to tell me that my eggs are rubbish lol- but they all seem to agree that the last 2 miscarriages looks like they were chromosomal. The 20 week one is anyone's guess really, this is what bothers me the most, that it was a viable baby and that whichever the reason it couldn't grow further (whether blood clotting or thyroid/hormonal issues) it could have been picked up had I been more regularly screened....

I feel like I've missed my last chance for a pregnancy that will make it and that from this point on, I'm reliant of my reduced fertility and my slightly worse for wear eggs (at the age of 40, as it's all a "numbers game", a Russian roulette where each time there's a 50% chance to lose the pregnancy- on the basis of age alone)

I am trying to focus very hard on a daily basis on all the good things in my life and see what I am fortunate enough to have, as opposed to what I've not been managing to achieve. It's such a tough exercise, isn't it?

I have never taken the time in my life to do proper introspection or to exercise "mindfulness"- both of which are necessary if I am to come out of this with a sane mind.
Joke's on me now as I am trying to clutch at straws, anything to help me find some meaning in this whole painful never ending ugly mess we've found ourselves in....
I am taking strength from all the ladies in these threads who have gone through similar ordeals and yet manage to find the strength to keep going...

[CarryOn2016]

Hello Anna, I guess it does seem all overwhelming but there is still hope even though at times all you want is a whole bottle of wine 😜
It is good you are trying ovitrelle, had you done that before? Fingers crossed for u.
Take good care and hope u manage to have a relaxing Sunday X

[333LuLu333]

Ahh babe If your eggs were rubbish the consultant would tell you that it's time to call it a day. They haven't... Also when I saw Prof. Brosen's he said as heart breaking as it is rmc is a numbers game. You have the same chances of a viable pregnancy with every rmc pregnancy they never reduce. Yes age may not be on your side... but you're also not over the hill... very hard but try and see some positive. Thinking of you... x

[annaif]

Hey there, thanks for checking up on me
I always find the day after an important medical appointment to be a bit of an overwhelming info overload and end up wanting to drink a bottle of wine as a result (I didn't!)
I suppose it went well in the sense that he spent lots of time with us discussing my history and looking at all the results.
We liked him and his general approach much more than Shehata's arrogance and haste.
He did outline the possible causes of my rmc's in a very neat diagram which leads us to a whole load of tests and investigations on the probable reasons. We have already done quite a few of them so we have ruled out many of the probable causes.
He also agrees that there must be an underlying immune issue causing havoc with my reproductive and thyroid system and that the two are linked.
He sent us for blood karyotyping testing which should give us results in 5 weeks. He also suggested to proceed with a monitored cycle and timed intercourse after caused ovulation via Ovitrelle injection.

But... He did make the valid known point that my age is not on our side, in terms of trying naturally and the inherent quality of my eggs. He also pointed out that he's a fertility specialist as opposed to a reproductive immunology specialist (like Shehata) but he uses similar protocols and labs as S does so I can continue on the same basis as with S without needing to do the trek to Epsom every time.

He also reduced my pred dose from what S suggests in his complex NK plan as we don't know how long it will take me to conceive again and it's not great to be on this dose for prolonged periods of time.
So there is a form of plan in place but the more I think about it, the less confident I am that 1. My eggs are not totally rubbish and 2. My body can actually sustain a viable pregnancy

I guess I need some time to digest it all. Just feel a bit deflated at the moment

[CarryOn2016]

Hi Anna. How r u doing? How was your appointment yday? Take care

[CarryOn2016]

Thanks Anna
I am using iPad and phone that's why then i can't pm.
What made you decide to go and see someone else? I find it so tricky with different Drs having different ideas! And it looks like then end up with aspirin, vit d, foclic, likely heparin +- pred and progesterone.
I have not yet tried acupuncture but might give it a go in a few weeks.

The spa lulu sounds a good ideA together with the walks.
I honestly am finding this therapeutic too 🙂 Never tried it before.
Good to hear your updates lulu, gives me hope!

[333LuLu333]

Try and get outside for your me time enjoy the flowers and greenery. I also signed up for lovely spa for one month as my time out... If something like that suits you? Maybe write a diary to offload your thoughts... and shred them... and in the meantime vent away to us x

[annaif]

Thank you ladies, it means a lot to be understood and not dismissed with the usual "oh you just have to relax and it will happen" or the worst "what are you worried about, you already have one child"....

I am trying to not freak out by the idea of pregnancy too much, before it even starts! I was speaking to my acupuncturist the other week who basically said to me that I need to make some quiet time for reflection in my hectic lifestyle, just for myself, so that I can start feeling safe that my body could do this.
And it rang so true, it's this feeling of loss and fear that takes over the normal maternal instinct that kicks in once a pregnancy is detected....but I have to find a way to not get carried away by the panic, otherwise what's the point really....

CarryOn, if you're on a computer you can click on "message poster" for a PM- if you're on a phone it's a different process (used to be able to do it but clearly not any more!)

I am seeing Dr Thum on Friday at 12- I had to go through the depressing task of filling in all the forms with all of our medical history on our losses and secondary infertility, collate all the different test results from all the clinics we've been the other night with DH.... It's taken so much time and resources from our life, I really hope that this will lead us somewhere as I feel robbed of my innocence and joy over having another child. And this will never ever come back....

Courage!

[333LuLu333]

Ah anna I know how you feel, and so many mixed feelings and for so long. I don't think fear or negativity can change an outcome, the same as positivity (for me anyway) so try not to beat yourself up. I now try to keep level (yet at times neurotic) head (not too negative not too positive just real), and looked what happened. It is hard at least we have each other.

[CarryOn2016]

Hello annif
good luck. When are you going? It is nerve wrecking and I can completely understand what you are saying of the fear and reluctance!

I am Trying to figure out how to send you a pm but failing miserably!!
Was curious about what dr Shehata had to say to you when you went back for results
I guess we got to remain positive somehow.....
Glad for this support 😊

[annaif]

Nice to hear from both of you Lulu and CarryOn

I am also on aspiring, vitD, pregnacare and a whole lot of additional supplements I've decided to take to boost egg quality.
I have decided to make a move to the Lister as the Shehata London clinic is closed for an indefinite amount of time. Have heard very good things about Dr Thum and he's supposed to be following similar protocols with Dr, uses same labs etc so will be able to work from the results I already have.

Let's see how it goes....Hopefully a fresh pair of eyes may give us a different insight on what's wrong.

It's great to hear that you're coping well with the pregnancy Lulu, I am stressing out even at the thought of getting another BFP (which is obviously something that we really want and are trying for but are terrified of in equal measures)
So I am wondering whether my fear and slight reluctance at the thought of another pregnancy may actually set me up for another failure....

Does this make sense??

[CarryOn2016]

Hello 333lulu333 and thanks.
Hope you are feeling well.
I started aspirin previously but stopped it as thrombophlia tests were normal. Had previously taken vit d but this is a higher dose
Mc early - last one in April at 12 weeks. Awaiting thyroid and nk cells and some other blood clotting tests. Got to wait 1 month.....and cannot ttc. Seems long but will see.
Take care

[333LuLu333]

Ooh that's good. Have you tried any of those meds previously? Hopefully they will help are you mc's early or late out of interest? Are they thinking nk cell and steroids perhaps? PM me if you ever need me by the way.

All ok over here strange but good x