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Balanced advice needed re Dr Shehata treatment plan.

(36 Posts)
YompingJo Fri 12-Aug-16 21:53:16

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?

OP’s posts: |
mnpeasantry Fri 12-Aug-16 22:03:13

So sorry for your losses. So heartbreaking and it can be such a lonely place.

The ethics are questionable but if NICE won't/can't do the clinical trials needed to provide the solutions that would enable treatment in the NHS, what is Dr Shehata supposed to do? He is part of our market driven society. It is an incredibly elitist service but people are desperate.

I have been successfully treated twice by Shehata and I will say for him that he does try to minimise costs where possible (doesn't recommend screening for chromosomal causes as v expensive and not treatable anyway). I found there were a few ways to cut costs in terms of not always seeing him, not having scans every fortnight. I find him to the point which I don't mind but we took our DS to an appointment when we were trying for no 2 and he couldn't have been sweeter with him.

I wish you the best of luck OP

veneeroftheweek Fri 12-Aug-16 22:28:41

I really feel for you, having gone through similar losses a few years ago, having previously had a child. I wanted to see Shehata and dp and I rowed about it as his concerns were similar to yours - it's all so untested and massively expensive but I was feeling desperate and we eventually decided to go ahead. Shehata said I had very high nk cells and I was put on pred and intralipids. He also uncovered a thyroid issue which was not picked up on by the recurrent miscarriage clinic at my hospital.

It was my first experience of private medicine and it did feel a bit like funding someone's second home each time I paid for any treatment, particularly the intralipids but I got pregnant very quickly and , crucially, stayed pregnant. My son is now four. I was 44 when I had him, not sure about my ovarian reserves though. Because I had a successful pregnancy very quickly it wasn't as expensive as I'd feared and I would (and have) recommended Shehata to a number of other people.

My experience with all this was a few years ago so things may have moved on since then so I'm not sure whether all this is helpful or not really.

Have you looked for the "pred thread" and chatted to people on there about your concerns? I've not been on them for a long time , so not sure how busy they are but many of them will be going through the treatment with Shehata at the moment.

Good luck with your decision. It's so hard. Xx

YompingJo Sat 13-Aug-16 17:52:33

Thank you both, it's helpful to hear other perspectives.

mnpeasantry , I got the impression he would not be very happy with me having fewer scans etc, did you talk with him about it or just decide to space them out more yourself?

OP’s posts: |
Marmiteontoast76 Sun 14-Aug-16 08:45:58

Hi Yomping. We are in a similar position to you. Been given a treatment plan by Shehata but are very nervous about going ahead. My dh is a bit of a scientist and would like to see hard evidence that this will work and Shehata has no papers to support the fact that his treatments work...although on forums there are many women who have been treated successfully by him.

The plan is an anti malaria tablet to be taken 2 months before conception, then the intrapilids every month. I just can't get my head round how that will stop me having another late loss. We went to see him after two second trimester losses in the past year.

The pred thread, as veneer mentioned, may be a useful place for you to look as there are many women with similar stories to you who now have their babies.

Wishing you luck with your decision.

YompingJo Sun 14-Aug-16 15:35:55

marmite, an anti malaria tablet? That's interesting, what's the theory behind that?

Sorry to hear about your losses. Mine have all been before 9 weeks, it must be just heartbreaking to have it get so far then go wrong, especially the second time.

I have seen loss of success stories, it's just hard to trust it all. Don't want to go into it expecting it to work and then fall to pieces when it doesn't. Drive want to go into it with a negative frame of mind either. I'm not sure whether I'm more scared of having another loss (which we have decided will be game over for us, 6 mcs is a definite message from the universe that it's time to give up and move on) or of it succeeding...

OP’s posts: |
YompingJo Sun 14-Aug-16 15:37:14

Ps I've found the recurrent mcs thread (and appear to have killed it). Is that the pred thread or is the pred thread in a different place?

OP’s posts: |
Marmiteontoast76 Mon 15-Aug-16 10:33:02

It's called the Pred thread and is on Pred thread number 19 or so now. It's in the Conception board in the becoming a parent section.

The anti malaria tablet is called hydrochloriquine or something. It's used to treat lupus and arthritis which are both autoimmune diseases, so he's started giving it to women with high thyroid antibodies and nk cells. Think he's used it on about 40 women so far with interesting results. I'm not sure why he gives some patients this drug and others pred though.

mnpeasantry Mon 15-Aug-16 21:50:46

He's very busy so it's not always practical to see him directly every time I went. It wasn't really a problem but that might be because it was my second time with them so the treatment had already proven successful. I didn't do diagnostics the second time either, I just decided the likelihood would be that I had the same needs and Dr Shehata was happy with redoing diagnostics or just repeating the treatment.

YompingJo Fri 12-May-17 11:34:11

Thought I'd update in case anyone stumbles across this thread... We decided to go for it and are so very glad we did. 38.5 weeks pregnant now and all's looking good. So so good to have a happy ending to all of the heartache. I'm happy to be messaged about any of the treatment if anyone wants to ask anything.

OP’s posts: |
Iggi999 Sun 14-May-17 12:56:36

Brilliant news, it really is the best feeling smile Best of luck for your delivery

Starshine1 Sun 14-May-17 22:36:25

Great news to yompingjo! We are just at the start of our journey with mr shehata after five mc following my little boy who is three. Desperately hoping for success! What treatment did you have if you're happy to share x

harrietm87 Tue 16-May-17 23:00:41

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!

Starshine1 Wed 17-May-17 06:46:34

Thanks Harriet- have just found that thread x

Take4 Thu 17-Aug-17 15:36:59

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.

choochooo Thu 17-Aug-17 22:36:05

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

Snoopysimaginaryfriend Mon 21-Aug-17 13:53:15

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.

misscam Thu 30-Nov-17 16:15:16

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

Samcat237 Sat 03-Mar-18 16:07:36

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

PJ12 Tue 13-Mar-18 13:55:31

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.

PJ12 Tue 13-Mar-18 13:57:02

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

Samcat237 Tue 13-Mar-18 15:08:54

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 Tue 13-Mar-18 19:02:21

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 Tue 13-Mar-18 19:46:14

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 :-(

Wildestflower Tue 20-Mar-18 12:03:15

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.

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