Under Dr Shehata care but still miscarried

[anonymouslyinfertile]

I'm wondering if anyone is in the same boat. I am under Prof Shehatas care for recurrent miscarriage. I was under his care trying naturally for a year (hydroxochloroquine, baby aspirin and then onto intralipids if i fell pregnant) I sadly never did fall pregnant naturally despite all our efforts.

We moved onto IVF where my protocol changed
Omeprazole
Prednisone
hydroxochloroquine
Fragmin
Metformin (for PCOS which was discovered during stims scan)
Aspirin

We fell pregnant but sadly it ended in miscarriage at 6w5days. All i see is success stories for Prof Shehata but I'm worried I'm not going to be one of them. Is there anyone else who is under his care but still miscarrying?

Thanks in advance xx

So sorry to hear this @anonymouslyinfertile I'm seeing Prof Shehata at the moment and on our first superovulation cycle. I'm worried in case we can't conceive or we miscarry again. I have read some stories where he has done further tests after miscarriages and managed to find a treatable cause. Have you asked him for a follow up appointment to discuss it?

Hi @Star222 he has done all the recurrent miscarriage tests. I have over active NK cells but still miscarried despite being on his protocol - unfortunately we weren't able to have any genetic testing on the baby so he has advised to keep protocol the same. He did mention GCFS but its so expensive and not really sure if we want to add something else to it if its not necessarily needed x

Hi,

I am really sorry for what your going though, I want to share my experience of epsom hospital Dr Shehata and Miss Viswanatha to reassure you about the experience I just had with a mis dignosis admitted. Regarding the 2 above doctors.

I managed to read my own results and upon reading the British Medical Journal which is a trusted source by my mums friend who is a doctor it's highly possible that there is no proven evidence that there is such a thing as high natural killer cells as the trigger limits haven't yet been scientificly proven, I discovered this because I can read other lab results and the trigger limits are missing on the results table.

Miss Viswanatha was so annoyed I obtained and read my results despite waiting 2 months to speak with her to begin with.

She called me up in the middle of work randomly demanding to know where I got the resuts from, I'm legally entitled to them. I hung up because she kept asking me as I covered for the hospital so I asked her to email me.

Most people wouldn't guess this but the consultants have admitted to me that they have gone against the set protocol and it is still reaseach, see BMJ article written in 2022 download leaflet. It is an authorised STUDY and you could still be responsible for your own successfully pregnancy.

It's an authorised study provided you sign the declaration of helsinki this is why they ask you to pick your own prescription after signing a disclaimer.

I didn't because it's not backed by medical science yet, and not on the generic assessment criteria written on your blood test results. The limit you should fall within in the case of NK cells will be missing. Its only their opinion on professor Shehata's website.

This is why your doctor might not be aware of it and they tell you you won't find it on the Internet because, it's not scientificly proven its a study. They don't always word it correctly.

You also need natural killer cells to get pregnant, fight of infection in pregnancy and to fight things like cancer.

It's not a diagnosis yet its a clinical trial.

The BMJ article 2004 said that women involved in these studies could find them selves in a vulnerable position.

My experience is that Dr Shehata and students want to test medication on people. Think twice if you want to be a trial. Even after being told I was to be discharged they still tried to offer me the appointment they want people to reasearch. But I am discharged as there is scientifically nothing wrong with me, that letter is to follow.

I don't know what stage your at with your pregnancys but I want women to be able to make an informed decision. As this is what I uncovered just yesterday.

I hope this makes you feel better because scientificly it's still highly possible that there's nothing wrong with your NK cells. As you cannot be diagnosed as a clinical trial.

I hope this helps you x

@Butterfly3xo This makes me feel much better about not going back to Shehata. My gut doesn't believe it either. Thank you for this xx

Glad it helped, x

I'm sorry for your loss @anonymouslyinfertile I have had 2 losses under Dr Shehata, our one last year was a healthy baby. I am going to try gcsf. It is confusing to be on the protocol and have another loss. We've been massively let down by Tommy's and the nhs, so I feel more comfortable being under a specialist. And I feel that for me, Reproductive Immunology seems to be relevant as we have identified no other cause to our losses and I have positive indicators of autoimmune conditions. Two of my babies were tested as chromosomally healthy and I seem to lose my babies at the same point. To me, you don't lose healthy babies for no reason.

@Butterfly3xo were you under his NHS clinic? I wonder if things are different being an nhs setting because in his private practice, I am not part of a clinical trial. I do have the nk cell parameters on my results paperwork and I also have the details of the treatment options with the percentage breakdown of success (ie with prednisolone vs intralipids vs ivig). In nhs treatment both their infertility clinic and at the tommys unit at my hospital, I have never been given copies of my results. But under the crp clinic, I have copies of everything and it's all been explained.

I have previously seen Professor Brosens at the Coventry implantation clinic and there were clinical trials forms to complete as that is a research trial with Warwick University, but they have not helped me either and don't seem interested in helping. I also saw his colleague Professor Quenby who only wanted to sign me up to the cerm trial as she was convinced I had chronic endometrisis - I don't, I've been tested twice. But no further help was forthcoming.

Nk cell testing is a contentious issue, some people in the nhs and the medical community are strongly opposed to the tests, evidence and treatment but will offer women like me, who have lost multiple babies, zero support or help into carrying a healthy baby to term.

I wish you well with your next steps.

@VenusStarr Very Sorry for your losses too, I'm pleased your babies had normal chromosomes that's good news.

I can see why you would say that, it's an easier way to get answers with a consultant.

Yep NHS but discharged as it's still reaseach, I just found out I'm pregnant, had no treatment.

if your LMG is <0.01U/ML it suggests your not a risk of an auto immune disorder mine was under, so im going with that, as thats based on proven trigger limits. I'm just confused by all this reasearch.

I lost a stone on the cambridge diet first hopefully this one will be ok, will keep you posted.

I'm not under under any consultant at the moment.

Feeling determined 💪

Xx

@VenusStarr Very Sorry for your losses too, I'm pleased your babies had normal chromosomes that's good news.

I can see why you would say that, it's an easier way to get answers with a consultant. Yeah mine was healthy on the scan.

Yep NHS but discharged as it's still reaseach, I just found out I'm pregnant, had no treatment.

if your LMG is <0.01U/ML it suggests your not a risk of an auto immune disorder mine was under, so im going with that, as thats based on proven trigger limits. I'm just confused by all this reasearch.

I'm not under under any consultant at the moment.

Feeling determined 💪

Xx

@VenusStarr Very Sorry for your losses too, I'm pleased your babies had normal chromosomes that's good news.

I can see why you would say that, it's an easier way to get answers with a consultant. Yeah mine was healthy on the scan.

Yep NHS but discharged as it's still reaseach, I just found out I'm pregnant, had no treatment.

if your LMG is <0.01U/ML it suggests your not a risk of an auto immune disorder mine was under, so im going with that, as thats based on proven trigger limits. I'm just confused by all this reasearch.

I'm not under under any consultant at the moment.

Feeling determined

Xx

@Butterfly3xo it’s always been a worry to me as nothing has been scientifically proven and it even states this on the consent form you have to sign. Like @VenusStarr i went to his private clinic and the results include. parameters and show which medications reduce the number of nk cells and by how much. The only thing im dubious about is how he now seems to want people on pre ovulation intralipids monthly until a positive pregnancy test. Looking back on this thread he only used to recommend the intralipids on positive test. Personally think he’s excellent at what he does, there is definitely something in it but I also think he’s slightly taking the p*ss with the costs. I guess the parameters he’s put in place for the nk cell count and activity are based on his experiences in his private clinic and they wouldn’t accept that within the nhs. It is worrying that other professionals don’t believe his methods work but he has had many successes, would these women have been successful anyway? I think it’s unlikely where there have been multiple losses. No one will ever know for sure what worked but I guess by that point they don’t care! I’ve had 9 losses and in the midst of that I had a son with no medical intervention. I’m sure if I carried on forever I might have another child because there was obviously that one month where my nk cells were lower or less active for whatever reason. It’s the repeated miscarriages on his treatment plan that’s concerning and the trial and error approach. But I guess that’s all he can do. I wish I could be confident in his 80% success rate!

@Ralowi have they given you any trigger limits for the NK cells?

As even these that I was given seem to conflict between the 2 consultants.

Miss Viswanatha said these are the limits:

Total NK count is high if over 200
Total Nk count percent is high if over 12%
Total Nk 69 count is high if over 0.8

On Dr Shehatas website he says these are the limits 10 to the power of 6 is the unit of measurement in some cases, then some how that trigger limit turns into a percentage.

CD69+ NK cell count above 1.0 x10 6 /L are 92.1% and 92.3%

Just wounding if they said a limit to any of you? Or if they are telling people what they like, so that they can test on them I think that would be an important discovery for us all to know.

X

@Ralowi have they given you any trigger limits for the NK cells?

As even these that I was given seem to conflict between the 2 consultants.

Miss Viswanatha said these are the limits:

Total NK count is high if over 200
Total Nk count percent is high if over 12%
Total Nk 69 count is high if over 0.8

On Dr Shehatas website he says these are the limits 10 to the power of 6 is the unit of measurement in some cases, then some how that trigger limit turns into a percentage.

CD69+ NK cell count above 1.0 x10 6 /L are 92.1% and 92.3%

Just woundering if they said a limit to any of you? Or if they are telling people what they like, so that they can test on them.

I think that would be an important discovery for us all to know.

X

Sorry keep posting twice as it says the server is down

@Butterfly3xo youll have to forgive me as I’ve not fully got my head round all the figures and terminology! Total nk count is high if over 200 or 12% nk cd69 high over 1.0. I’m not good enough at maths to figure out the other bit you’ve mentioned lol, there’s no percentage showing on my results under the cd 69 bit.

so my results are 246.1 nk cell count which is high, but when worked out as a percentage is 11.4 which is normal so that bit does confuse me.

my cd 69 count is 1.01 so it’s just tipped into the high category.

hope this makes sense to you!!

@Ralowi I see same hear I just got told that's what 1 x10 6/L means.

Seems like they told you 1% and me 0.8%

I copied and pasted those out of an email,
Then I've noticed they don't use the percentage sign on the 200 one.

But I can see why because there's no such thing as 200%

I actually don't belive the Total NK69 limit
That they display as a percentage.

They add up NK dim and NK bright to make the total NK69 percentage.

I think 1 x 10 6/ L is a unit of a fraction

But that's but adding up 2 fractions then come up with a percentage. I don't that's correct.

But with the other 2 Nk result if you take the total count number X 1 /100 x 6 I think that's how u convert it to a percentage or nearly there or there about anyway.

@Butterfly3xo it would be interesting to see other peoples results to see if they are all the same criteria/limits. I can't help thinking everyone who has their nk cells testing there comes back with high results!

Hi all, I got my NK cells as part of my Lister treatment which also work with the St Helier clinic. Wondered whether anyone knows whether the Nk cells which costed me £1049 need to be repeated several times during pregnancy or once done, the treatment plan can be decided and that’s it, no more testing?
They prescribed me Prednisolone 25mg and I asked for the Intralipids and the Immunology doctor at Lister agreed.
Any advise would be beneficial. Thank you 🙏

@K8dferXdder I don't believe the tests are repeated which is a good thing, mine cost £3k!!!

@K8dferXdder forgot to say that at his private clinic dr s does require 2 weekly scans until 12 weeks

Hi @Ralowi and thanks for the information. Can I ask you whether your NK cells tests with dr. S were done locally in London and if so wondered why the costed £3k? Does this include consultant fees? Mine with Lister were sent to RIC in St. Helier, they were not sent to US/Chicago etc. it is good to know dr. S treats in a similar way high NK cells without the need to repeat the tests. I had a doubt in Lister but that seems to be the approach of other clinics too.
It is great that dr.S monitors the pregnancy every 2 weeks because Lister don’t do monitoring :( so I may consider monitoring under dr. S then. If you have more info on the monitoring it will be great to hear. Do they do blood tests or just scans and do you pay each time you have the scan or it is a monitoring package?
thank you!

@VenusStarr hi, did you end up having a successful pregnancy after your miscarriages with Dr.S? Did you add gcsf? Thank you🙏

Hi @Sarah681526 I haven't. I'm just about to do my last ivf transfer with gcsf (still under Dr S). We've had a lot of personal delays, so not done an ivf transfer since October 2022 nor tried naturally. But this is our last try.
Are you seeing him?

@VenusStarr sorry for the delay in replying for some reason I didn’t get any notifications.

my reply does come with a trigger warning of successful pregnancies.

our gut was telling us that Shehata and his team were just after our money. I didn’t like Michaela’s attitude and I found her quite rude. I was throwing thousands at their treatment so I at least expected a little respect.

we decided to do our last ivf transfer without Dr Shehatas treatment and it was a success. We had a beautiful baby boy. The clinic gave me extra progesterone this time round so maybe that was the missing piece.

I then fell pregnant naturally when I was 3months pp & had a beautiful, healthy little girl.

sending you lots of love xx

Congratulations @anonymouslyinfertile 💙 🩷 that's lovely news.
It's so hard to know what to do really. I'm not sure I believe in the immune stuff anymore, especially as we lost a healthy baby on a full protocol. No one really seems to know what our issue is. But I don't think I feel safe enough to not do the immunes, if that makes sense? I'm pleased it worked for you x