Balanced advice needed re Dr Shehata treatment plan.

[YompingJo]

I haven't posted in here about it for a long while but have had 5 early mcs after a successful pregnancy with my now nearly 4 year old. I have seen Prof Quenby who found normal nk cells but put me on progesterone to combat possible hyper fertility, which made no difference the next time. I have now seen Mr Shehata and had my follow up appointment to discuss results yesterday.

Between my 2 appointments with him, I had hormone levels checked through my go and found that my ovarian reserve is low enough for any future pregnancies to be extremely unlikely... Day 3 fsh was 14.3. I am 41.

The followup consultation was... I'm not sure. He has found things as a result of his tests, but I think I need to do some research myself to understand the results. I am a scientist at heart and I am very cynical because of the money involved and want to make sure that what he says could be problematic actually could be, if that makes sense? He found three things:

1. A normal thyroid function but elevated thyroid antibodies,
   
2. A normal number of natural killer cells but a high probability of them attacking a pregnancy, then he found that they responded well to steroids
   
3. Elevated TNf alpha which he said is another type of killer cell. Only marginally above normal levels though.
   
   He recommends the "complex treatment plan" which involves progesterone suppositories again (oh the unbridled joy of shoving those up my jacksie again...), prednisone and intralipid infusions every month, £300 a time. And 2-weekly scans for the first 12 weeks (if we make it that far) at £220 a time.
   
   I thought I would feel relieved to have some explanations and a possible way forward, but it's really expensive, not scientifically proven, and involves a shedload of travel and time out on my part which is not easy in my job (I work in education and can't just ask for days off). And chances are it won't make a damn bit of difference due to the low ovarian reserve. (He didn't say this but it's my suspicion).
   
   I wasn't expecting him to offer me a free, easy solution - but equally I don't want to suspect I might be being a mug. I must sound really ungrateful and entitled... I know he's an expert. I just don't completely trust it all - I'm not sure why, but something just feels off about it all. I feel like he's going to make money out of my situation just because he's offering me hope. It doesn't feel totally ethical. But then, it might result in an actual baby. I've almost totally given up hope that that might be in my future. But does he just trade on women's hopes? Is it ethical to be making money out of me just because my body isn't working?
   
   Help, I need some clear thinking and straight talking. Am I being an idiot to be cynical? Would I be an idiot not to be? I'm so unsure. And so convinced that it's all pointless anyway due to age, hormones and history. Has anyone had these same worries and had them prove unfounded? Can anyone give me any reassurance or information that might help? Or maybe just a slap?

[Vsax]

I know it’s been a few years but I just wondered which consultant you saw in London? Thank you

[H0011]

Hi sheps2016 I hope you are well, i’m Interested to know how your treatment with shehata is going? I went to see him in April and also was prescribed humira, it totally freaked me out so I have been seeing a herbalist (complete opposite!) and after 3 months with her plan to try again for hopefully a successful pregnancy after 6 mc’s (starting at 11wks and declining slowing now to always a chemical at 4wks)
I have one daughter 4yrs and still feel baffled that this can happen after a successful and b easy pregnancy but he explained that your body can develop immunity to pregnancy and this is what’s happened to me. I do have a very strong immune system and hardy ever get ill, even with a cold which is why this NK cells rings true with me.
Anyway I managed to get an nhs app with his clinic and was totally not expending to see him (thought it would be one of his team) he re-looked at my bloods and explained that they only offer steroids on the nhs and for me I def needed the humira in order to bring down the first immune issue.
I actually found him to be much more friendly and approachable via the nhs, perhaps because I also had researched everything more, felt I understood and knew what questions to ask.
I do hope you have had success with the steroids. I am so terrified of the thought of injections and filling my body with chemicals and meds. I try to eat organic & healthy for future egg supply and never take any meds so the thought all all this terrifies me but I am desperate for a sibling for my beautiful girl as I can't image life without my sisters.
My egg count test was 8 and I am also worried that seems low on the scale he gave me. I hate this time pressure. 40 next year and wanted to enjoy it rather than be going through injections, possible mc’s but feel I donmt have time to waste with that count 🥺 any advice welcome ladies. Thanks for listening and praying some of you have your rainbow babies by now xxx

[PJ12]

Hi Sheps2016. I went to see Dr Shehata after 3 miscarriages and was diagnosed with high NK cells and very high tnf alpha (I think it was about 57). He also suggested steroids and humira. I declined the humira due to the fact that it doesn’t work half the time and it was very expensive. I started on the steroids and after 3 months asked to have my tnf apha retested and it came back at 27. So for me steroids alone were very effective. Not sure if that’s the case for everyone.
P.S. I ended up having 5 miscarriages altogether but did give birth to my DS in Dec. Wishing you the very best of luck xx

[Sheps2016]

Hi Mr Shehata peeps - we are considering whether to start treatment with him (five rounds of IVF, first round got pregnant and lost baby at 12 weeks, subsequent goes with frozen embryos and one fresh cycle at CRGH have not worked). We saw him and for us what he said sounded good common sense - I have high NK cells and he has proposed two injections of humira to lower my immune system, followed by the super ovulation cycle (ovulation drugs supported by steroids, oestrogen and progesterone, have sex when he tells you to). He felt IVF for us was overkill. I am most concerned about the humira - does anyone have any experience of this please? The idea of lowering my immune system for up to a year is causing me concern (well that and the steroids, the money, whether it will work or not......) we have seen him twice and found him efficient, straight to the point (needed at this point!) and kind.

[teatea1]

I know this is an older thread but wanted to offer my two cents on Dr.Shehata. I was refered to him and went to see him at his practice after suffering three miscarriages. I didn't enjoy my time with him, I found him really pushy and eager to move onto the next client. When I asked to book a follow up appointment the staff said he was fully booked and then went into the room to ask him when was a good time. I managed to over hear the conversation and he was really rude to them. My follow up was eventually scheduled for 8 weeks later. I did all of the blood tests which cost a fortune and in between my appointments managed to do some research on killer cells etc which appears to be quite a devisive field. I went for my follow up and I just knew he would find something wrong, the whole thing just felt like a total scam, my alarm bells started ringing and I just wanted to leave. Some woman who I wasn't introduced to sat in on the appointment and there was some pressure to start the treatment. Like I said I couldn't wait to leave, they tried to push some very expensive supplements on the way out when I paid my bill. I swore I would never go back. Instead I paid to see an amazing consultant in London who explained to me that my bloods all looked normal and there is no way I should go on the Shehata plan... he said more than that about it, but nothing to write about here. Anyway he told me to wait a few months and try again and hopefully this time things would work out. They did and I now have a bouncing 6 month old. The pregnancy progressed normally and I am so so so happy I didn't spend silly amounts of money on something I was sure I didn't need. DR Shehata said that without the plan he was sure I wouldn't have a baby. I am sure that he has helped many people, but he really wasn't for me.

[harrietm87]

@Roseas yes, discharged at 16 weeks. You should book in with your nhs hospital pre 12 weeks as usual and then you're just with them from 16 weeks onwards (though can pay for extra scans with shehata if you want)

[Roseas]

I am currently seeing Mr Shehata and I was wondering what stage of pregnancy you stopped treatment with him. It is very expensive, and it seems I won’t be on any prescribed meds after 16 weeks. Is that when most of you stopped?

[PJ12]

Yes, I did another test and it's also darker. I'm going to stop testing now as otherwise I will drive myself crazy.

I picked up my drug today and will be having my first injection tonight. I'm a bit nervous as there are side effects. I don't think this is a new drug as he told me he's been using it for a while. I think it is a last resort once steroids and hydroxy fail. It's expensive so that's why he doesn't offer it straight away (that's my deduction).

When do you get your results? It's good to have an answer one way or the other. Hopefully it won't really matter what the reason was as this one will be the one for you!

Have you booked your intralipids? I've got a scan booked with St Mary's at 6 weeks and one with Shehata at 7.5 weeks (that when things go wrong for me). I've never had a good 7/8 week scan.

Are you anxious? I'm trying to bury my head in the sand but it's not really working

[Samcat237]

Yeah I’ll hopefully go this week for intralipid if they can fit me in before the bank holiday! I’ve not heard of that drug before is it something new that he is trialing?

Well I guess I will find out if it was just a chromosome problem last time or if the steroids really don’t work for me, either way it’s some sort of progress!

I’ve done another frer today and they seem to be getting darker - I’m addicted to peeing on sticks!

Xx

[PJ12]

Wow, congratulations on your positive test. Steroids seems to work for a lot of people so I'm crossing everything for you. Will you be having intralipids as well?
I think I will be adding another drug with this pregnancy called g-csf. It's an injection that you have every 3 days for 10 weeks and it's quite pricey - £80 per injection (ouch!). It's meant to calm down your immune system (kind of like intralipids). Since I can't have intralipids I really wanted to try something else.
I really hope this is the one for both of us xx

[Samcat237]

Hi @pj12

Yes I found mine were when I was weaning off.. well I went for my follow up and he also added in the hydroxy but with the steroids as felt my immune system wasn’t supresssd enough..

Obviously the hydroxy has to be in your system 6 weeks so I was planning on trying again then.. however I had a surprise positive on Friday too! So now I’m really anxious as I haven’t even had a period since the last miscarriage 3 weeks ago!

Will just have to cross my fingers and doing the pred again.. ive only been on the hydroxy for just over 2 weeks!

Congrats on your positive I hope that this is a sticky one! Keep in touch x

[PJ12]

Hi Samcat. I was already miscarrying when the palpitations happened so I was already weaning off steroids. After that we took 2 months off before we went to see Mr S and he asked me if I wanted to go back on the steroids. My last episode was so scary (my heart rate was through the roof and I honestly thought I was about have a heart attack) and I said no. So he suggested hydroxy only and says he's confident that will be enough. My nk cells are high but the activity and tnf a are within range. I had a positive test on Friday so here's hoping that this treatment will finally work x
Wildestflower congrats! It's always good to hear stories with a happy ending

[Wildestflower]

I'm late to this thread (stumbled on it while looking for something else) but wanted to offer some hope. I saw Mr S on the NHS as happened to be in his catchment area. V similar story to OP. I now have a 3 and a half year old.

[Samcat237]

Wow do you know it’s so strange you say that because with my pregnancysst month I ended up being on the steroids 5 and a half weeks and I was having chest pain which I thought was the pred and my blood pressure was really high too... what happened did you tell him you were struggling on it and he took you off it? I think I might eventually end up asking to just do the hydroxy too if i can’t handle the pred next time.. but I’m not sure it was that?!

I hope that you get your second try at the hydroxy plan soon @pj12 it’s such an awful journey isn’t it :-(

[PJ12]

Yes, I am. My situation is a bit complicated (on top of everything else 🙄) as I can't have steroids or intralipids. I've had 5 miscarriages in total and I went to see Dr S after my 3rd miscarriage. When pregnant with my 4th (first on the treatment) I had an awful reaction to the steriods (or it could have been the intralipids, we're not sure. I was ok on steroids when it was short term). They gave major major heart palpitations and my blood pressure was sky high to the point where I can't take them now. Shehata's new protocol for me is hydroxy only. I was on that when I had my last miscarriage but that one turned out to be chromosomal so nothing to do with the drugs not working. I really hope that hydroxy will be enough for me as it seems like steroids and intralipids are the miracle drugs for most 😞 Fingers crossed we will be the lucky ones next time xx

[Samcat237]

Hi @pj12 that’s for replying! Yes that’s exactly what he did he added the hydroxy! Here’s hoping it works second time! Are you now trying 3rd time on his plan? Xx

[PJ12]

And I meant to say I'm really sorry you're going through this. Wishing you all the luck in the world with your next pregnancy xx

[PJ12]

Hi Samcat
I've had 2 miscarriages on Dr S protocol (first one we don't know what happened as it was natural and didn't manage it to get it tested, second one came back positive for trisomy 16 so no drugs in the world could have saved that one). He will add hydroxychlorquine to your existing protocol (it's an anti malaria tablet). Hardly any side effects on it so you won't even notice a difference.

[Samcat237]

Hi miss cam,

Hoping you might still be following, what happened after your mc on the protocol? I am just going through a miscarriage which was also my first time on the protocol and I’m wondering what he does next?

Sam x

[misscam]

Hi guys,
was diagnosed with boderline nk cells and high tnf alpha.
I have just had another miscaraige on Dr Shehata's plan. I was on predfrom ovulation, aspirin and progesteron.
Wondering if any one had failed experience on this protocol nd what was proposed after . did Dr S change the protocol ?
I was really couting on this treatment and nw I donot know where to start.
Iwould love to hear other's experience after a failed cycle with Dr s

[Snoopysimaginaryfriend]

www.mumsnet.com/Talk/conception/2982679-immune-nk-issues-aka-pred-thread-no-20

Hi choochoo and take4. This is the thread you need. I've just had my second DD in 14 months on Dr S's plan after having three miscarriages in a year so have nothing but praise.

[choochooo]

I'm about to have first appointment with Dr Shehata clinic after 4 mcs. I'm glad I found this thread, it gives me hope

[Take4]

Hi YompingJo - huge congratulations on your wonderful news, I was so delighted to read your update!!!

This is the first time I have ever replied to a thread - am not quite sure what I am doing, your post encouraged me to join!

If you were happy for me to message you (once I’ve worked out how!) I would love to know how you got on with Dr Shehata’s treatment plan and what it actually involved and if you were able to save any money!

To cut a long story short I am just 43, have had a molar pregnancy and 2 miscarriages and started a treatment plan with Dr Shehata just over 2 weeks ago for high NK cells.

I know my age is against me but going to give this a final shot before giving up – this baby lark is painful stuff.

Really grateful for all the posts.

[Starshine1]

Thanks Harriet- have just found that thread x

[harrietm87]

Yay yomping congrats! And thank you so much for returning to the thread as I've been having the same thoughts. Waiting for my test results from dr Shehata and worrying about the expense and the stuff I've read that says none of it is proven and could be dangerous!

starshine are you on the ttc on pred thread? You should join if not!