early pregnancy on Mr Shehata's plan - VERY NERVOUS

[mattsmama]

Morning peeps.

I have had 2 prev m/c at 12 weeks and I have one gorgeous DS. Mr Shehata has diagnosed me with high killer cells and high thyroid antibodies. I have just started his programme which involves steroids and now have got that positive pregnancy test on the first time of trying under his plan. I am so nervous it is untrue. I am frightened of getting too excited (although I can't help be a bit excited) but the past nightmares I have been through have left their marks if you know what I mean. Is anyone else in a similar position? Until that first scan I will be living on my nerves - trying very had to chillax but it's not easy! Constantly knicker checking - sorry tmi!

[Stogan]

Hi everyone
I have been reading all of your posts. I too am under dr shehata and swear the man is a genius, after 4 mcs we saw our babies heartbeat last week at 6w 5d and it was nothing short of a miracle. I have the very high cells at 3.79 and am due my second dose of intralipids next Monday. My question for anyone who can please help is, I had my last dose almost 4 weeks ago On Friday so my second dose will actually be done when I am 8w 1d is this ok? All of the advice I see says I need the injections at 4 and 8 weeks but then some say every 3-4 weeks I know it will only have been 3 days over 4 weeks but I'm panicking that it's 3 days too much. Does anyone have any ideas?
I too am putting on weight and don't seem to be Ble to stop eating which is worrying as I dont want anyone at work to know I'm pg until I'm at least 12 weeks but my bloated tummy is getting harder and harder to hide, it's good to know you are all feeling the same though.

To anyone nervous about the treatment it is easy and as someone stated Earlier, the hardest bit for me is the 500 mile trip to London.

I look forward to any advice and likewise am happy to help with any questions .

Good luck to you all on your journey ladies, it's been worth it for me already just to see that little heartbeat !!!

Xx

[mattsmama]

Freelance - Hi just been reading your posts on the other threads - CONGRATULATIONS! Fantastic news on that BFP!

[freelancegirl]

Hello everyone, wondering who will notice the thread has been revived! Comedyworks I am so, so sorry I haven't come back here and seen your post. How terribly awful with the loss of your son and 6 miscarriages. How did your appointment with Mr S go? Did you get diagnosed and then prescribed treatment.

My experience on the steroids - after 10 days of being on 25mcg and off trying to get pregnant, has not been too bad at all. I think the idea of them was worse than them in practise. I did get a few dizzy spells, a bit of hunger and the odd headache but nothing has been serious. I am testing tomorrow (gulp!) and will come off them for this cycle if negative. If positive I have to jump to 40mcg, progesterone and also arrange for intralipids.

Mattsmama and Ilovemysleep I haven't seen your names around for a while and I hope that's because you are happily now ensconced on the pregnancy boards rather than hanging around Conception or the Freak Out boards. How is it all going?

I've been charting temp and SWI like crazy... I am not getting any symptoms and feel like my af might be due but one thing I have had is twinges in my ovaries ever since ovulating! Very confusing. Can't believe I am going to test tomorrow. I am in two minds about how to take it. On the one hand it would be good to get a negative as it would give me another month to freak out less about the fact that it might all go wrong again (Mr S again said today how my ridiculously high cells weren't necessary good - Sleep I would really love you to dig out you results for me!) but I would feel better if I could then 'guarantee' it would happen in the next month or so. As getting pregnant feels like a huge hurdle to start!

Would love to know how you are all doing. Comedy do come and join us on the ttc/pregnancy on Prednisoline thread:

HERE

[mattsmama]

Hello Ladies - just been catching up on this thread - I thought it was pretty much " dormant" so only check occasionally!

Firstly just want to echo what lovemysleep says about Mr Shehata - he is FABULOUS! I am in my 19th week of pregnancy and was "discharged" by him last Monday. Everything is looking great and although I will never fully relax at all during this pregnancy I do feel somewhat easier! (this is my sixth pregnancy - and I have one DS).

I felt great too whilst on the steroids - I wasn't exactly skinny minnie to start with as I also had excess weight from my last miscarriage and I did put a bit of extra weight on with them (also started to get a bit of a moonface towards 12 weeks) but that is a very small price to pay and the swelling has gone down a lot now. The steroids gave me a stronger appetite than normal. When weaning off the steroids I would advise drinking plenty of water (think this helped me a lot as I had no symptoms when coming off them and apparently some people feel quite ill when coming off them). I had one bad headache at first when coming off them and I drank plenty of water from then on which I think really helped.

I asked Dr Shehata about why the steroids stop at 12 weeks as I was worried about the killer cells and my thyroid antibodies and what happens when the steroids are stopped. He explained that at this stage of the pregnancy the placenta is fully formed and takes over and is able to protect the baby. Also being on the steroids for much longer can cause the membranes to rupture. Hope this answers your queries in this respect.

If I can help at all in any other way - just ask away! Good luck with TTC. I used ovulation sticks (clearblue) and strangely enough (and very luckily) got pregnant first time. Also without the sticks I wouldn't have known that I ovulated later that month than usual (day 17). My cycles are always 28 days and I did wonder if I was going to ovulate at all that month - then got the smiley face on the clearblue!

Good luck xx

[Comedyworks]

Hi - I have read many forums but never joined in until now.
My story is similar and also different - in a nutshell -
Was very, very lucky and had a wonderful son and daughter in quick succession.
My son died at the age of two and a half.
Since then have had six miscarriages.
All NHS tests have come back fine but have tried everything I could eg aspirin, clexane
But .. Saw Mr S this week and for the first time feel that we may be able to have another child. Now waiting for NK results & thyroid.
Would like to know about what the steroid side effects have been like + What is the cost of the infusions?
Has been lovely to read such positive comments.
thank you

[lovemysleep]

Hi freelance - that's one question that I wish I'd asked, as I do ponder on it now. I'm assuming that the pregnancy is so well established by the time treatment stops that it's ok for further treatment to cease. Maybe the Nk cells don't see the baby as a foreign body to be attacked at this stage - they've got used to seeing it! If you do ask him, please let me know - I'd love to know the answer!
I'll go onto the conception thread and tell my story..
Good luck with the getting pregnant bit - and don't wobble too much with the constant knicker checking when you are pregnant! I found the ladies on the thread about being pg after mc really helpful - think PinkFondantFancy mentioned it earlier in this thread....
Keep me posted if you feel up to it xx

[freelancegirl]

Hello sleepy (like one of Snow White's lot :) ) I was just mentioning you on another thread and I read out your post to DH to help make him feel a little better about it too. It is so good to hear of someone with very high levels who is now in your position. Incidentally I haven't yet asked him why treatment stopped after a certain time - is it because the baby is now relying on the placenta or do NK cells diminish over gestation? Or something else?

I think he has told me to have intralipids around 4 weeks and 8 weeks so will see (if I get to that stage) whether there is a 12th week too. Right now the whole prospect of it all seems so scary, but I guess I just have to get on with it. Not the treatment, that seems like a necessary thing, but the getting pregnant and staying pregnant. And having a baby!

I do have a favour to ask of you and that would be, if you don't mind, would you please post your experience here too? It's a thread on conception with several very daunted people who are starting the treatment (on Conception board) and I know they would love to hear from you.

13 days to go until I pop the first pill!

[lovemysleep]

You're welcome, and it's lovely to know that I could maybe help you in some way..
Yes, I was on the very high treatment programme too - so I think that they were 3 times what they should be. I can't find the test results, but I remember he said that around 200 was the normal range and mine were 643 - so I think I may have looked at those numbers, rather than the ones you have (and can't remember the others). He also advised that I have an extra intralipid infusion when I went to see him around 12 weeks, as the mine were so high, just to be on the safe side. I can't remember him saying that I was in the highest 5% that he sees, but he did emphasize that they were very high.
We dithered over a couple of different routes of treatment - we tried the Zita West clinic initially, but didn't like it at all. Felt like they were trying to get as much money out of you as possible (didn't feel that way with Dr.S), and they were a bit lukewarm about NK cells and made it sound like the only route for them was really expensive. Something didn't feel right, and my gut instinct was for NK cells, due to my dodgy immune system (hayfever, asthma and psoriasis). I'm so glad I trusted my instincts.
When you do become pregnant, be prepared for any midwives, sonographers and consultants to be completely clueless about NK cells!
Just message me if you need any advice or just continue with the thread - I'll keep looking for you x

[freelancegirl]

Ahh thanks LMS. Your message fair made me a bit teary, especially with the offer of hand holding as I think I might need it.

It's lovely to see how it is working out for you. Were your NK cells very high too? He said mine were VERY high (his emphasis not mine) and in the highest 5% he sees, which was a bit worrying. Daunted is exactly how I feel. He said I would have had very little chance of having a baby without treatment so it's a good job I trusted my instinct and went for testing rather than try again. Yes you were so lucky to conceive so quickly. I am really daunted by that too.

[lovemysleep]

Oooh, same as me!!!!! It is a bit daunting to find it out, and it spun me out for a few days, but then I thought, at least I have something to work with and some kind of solution to my problems.
Don't worry about the treatment - I found it pretty straightforward to be honest, and a lot easier that I ever thought it would be. The intralipid infusions are easy too, and the steroids weren't anywhere near as bad as I thought they'd be.
The scariest hurdle is getting pregnant - we were both popping vitamins like crazy (Zita Wests Fertility supplements), not really touching much alcohol and eating healthily. I tried to focus on getting fit so I didn't have a one track mind on conceiving. I used ovulation sticks, and I admit, I feel very, very lucky to have conceived so quickly, but fingers crossed, you will be up the duff pretty quickly too.
I have absolute faith in Dr.S's treatment - I truly believe that I would never have got this far without his help.
If there's anything you need to ask me, feel free - I'd be glad to hold your hand if you need it. Take care xxx

[freelancegirl]

Hello ladies. Just back from my Harley Street appointment and it turns out I have some of the highest levels of NK cells. 3.79 when anything over 1.8 is considered 'very high'. Bugger! Those are the NK69s. Am sitting here with Dr Beer's book and Dr Google and trying to found out more. He's recommended 25mg prednisoline when ovulating, increase to 40mg if/when BFP and then Intralipids and Cyclogest too. I was a bit shocked to be honest about the NK cells. I am apparently in the top 5% of people he sees. Does that make me part of the Olympic Team even though I have no kids as yet...?

Am a bit panicked. There seem like so many hurdles - actually getting pregnant being the first one. I think I will post on Conception and see if there are any folk in the same position. But it is good of course to know that you ladies have managed to do well. If you have any words of wisdom for me do let me know!

[lovemysleep]

22nd June! Brilliant!

Or maybe rock the boat a little and swagger down Harley St in a scabby tracksuit, with fried egg/kebab stains on it.....or maybe not

[freelancegirl]

I will make sure I dress appropriately and maybe borrow a handbag sized dog for strutting down the street with in vertiginous heels :) me not the dog of course. Am so excited now. My Nhs referral was made on the 5th April but am glad I went private initially as the appoitment has just come through for 22nd June. So for the sake of what so far will be about £500 it has saved me about six weeks in waiting which I think is worth it. I will be 37 in July and the looming presence of ye old biological clock is there too. I will indeed let you know how it goes on Monday. Hopefully soon I will be on those hardcore drugs and can get on with that next stage :)

[lovemysleep]

Freelance bloods sound confusing and I am clueless, I'm afraid!

Harley Street is a crazy place.....unbelievably expensive cars parked down it, and you see people being dropped off by their drivers. Felt like such an interloper and a peasant!!!!! We didn't hang around to go on the NHS (am 39), so that's brilliant that you are going to save yourself some money.

Your treatment plan will probably involve taking steroids 2 weeks before you ovulate, and then if you get a BFP, you'll start the treatment plan properly. Otherwise, you'll stop the steroids and start them again when ovulating. You may be very lucky like we were, and get pg the first month of trying (bonkers!), so straight into the treatment. If you have very high NK cells, like me, then you will have to have intralipid infusions too. I didn't have any other issues - to do with my blood etc - so our treatment was quite straight forward.

Let me know how you get on - and if I can give you any advice, I will. Good luck! xx

[freelancegirl]

Gosh, 3 times what they should be? That seems really high. I can't wait to find out my results on Monday (note to self: get out more).

I can imagine that after 4 mcs you will never feel fully relaxed but it's wonderful that you know it is all going well and that you are having a little girl. So very pleased for you.

I've just been down docs to pick up blood test results that Mr S asked me to do, trying to make sense of them. Apparently my Fibrinogen level is low - 1.59 (normal range 2.00-5.00) and my Factor VIII assay level is low - 64 (normal range 73-200). If anyone knows what the hell that means please speak now! Dr Google tells me these two are low when blood is thinner/not clotting as opposed to over clotting but I think one of these can also be attributed to pregnancy (the extra blood generated?) and having had a 12 week mc 2 months before the tests maybe my blood would have still been thinner.

I guess all will come clearer on Monday. Am rather excited about going to Harley Street too! But thankfully my NHS recommendation has also kicked in now so hopefully future appointments can be at Epsom in terms of costs.

So what happens after you have been given a treatment plan, do you then have to go off and get pregnant before anything else happens...?

[lovemysleep]

Freelance - I already have a DD, who is 5 - Dr Beer calls women who have children, but still have high natural killer cells, his "olympic team", as they often have the highest level of NK cells - I had to follow Dr.S's very high treatment programme as mine were 3 times what they should be.

I am a bit more relaxed, but I don't think I'll ever be quite as relaxed as someone who hasn't experienced pg loss - especially after 4 mc's! I just can't wait to meet her (we know we are having a girl), and am quite happy to wish this pg away, so I can finally hold my baby. I love being pg, but I don't fully trust the process to deliver my baby.

I am milking it though - trying to get hubby to do more and look after me a bit - it'll be the only time I get looked after!!!!!!!

[freelancegirl]

Hello Holly I have indeed read the Alan Beer book, it has been my light-hearted bedtime reading (complete with annotating pen at the ready) for many a night now :)

I did self refer to Mr S. Did you? I can't remember exactly how I found him - a lot of online time obsessing during a long drawn out mc. I have had to go privately too, although my NHS appointment has just come through so hopefully any other follow ups can be NHS. Monday am going to Harley Street though, my follow up appointment to see what NK tests results reveal and work out treatment.

As well as the threads on Conception I hang around (and spend far too much time) with a bunch of ladies who all 'met' whilst miscarrying (and a few more who join) and we chat nonsense as some of us are not yet ready to ttc and a couple are pregnant again already and too nervous to join the thread Pink suggested! We have gone from having thread titles that are freaking out about bleeding, a virtual holiday in Ibiza thread when we were starting to move on and now on here

Do come and join in if you fancy! Hopefully more will be moving to the freak out room at some point when we are pregnant again/brave enough too :)

[PinkFondantFancy]

Holly come and join us over here if you fancy: pregnancy post MC - it's like the 'grads' thread from the freak-out room, people generally migrate over at some point after their 12 week scan. I was also at the ARGC - they are amazing!

[BagofHolly]

Freelancegirl, can I have a look at the other thread? I too am evangelical about approaching fertiliy issues in this way! I take it you've read the Alan Beer book too?

[freelancegirl]

Hi LMSleep, yeah it was me randomly googling his name late last night and finding this thread! That is brilliant that you are pregnant and your pregnancy is progressing well. Are you beginning to relax into it yet? Do you have other children? I think I have seen you on the freak out boards but like I said I have no place on them yet...

I too can see myself getting really evangelical about his treatment. I am in fact, on another thread, discussing researching something about it as my work as a journo (am usually on the fluffier side of things) as I really want to draw attention to both the issue of miscarriage and also this treatment. And the not-brilliant treatment experienced by a lot of people on the NHS.

I think about 1.5 stone heavier than pre-pregnancy actually sounds about right anyway, so I am guessing what happened is that you put it on quite quickly when starving on steroids and then it levelled out to normal level. So the only uncomfortable bit is that bit when no-one knows you are pregnant and you worry about people thinking you are just fat! A small price to pay I guess. I felt like that in my last pregnancy (mc - I have no kids yet) anyway.

Am really looking forward to starting treatment. Damn - can't believe I still have the obstacle of actually GETTING pregnant again first :)

[lovemysleep]

hi Freelance - wondered why this thread had popped up!

Well, I'm now 23 weeks pg, and feeling great - I have nothing but praise for Dr.S - he has restored my faith in being pg!

Steroids were fine - just raging hunger, so I put weight on, that has levelled off now - I'm about 1.5 stone heavier that pre-pregnancy, and probably put around a stone on in the first trimester. All the treatment was surprisingly simple and easy - even the Intralipid infusions. The hardest part was traipsing down to London!

Our 20 week scan showed that the baby is fine too - was worried about the possibility of cleft palette, but Dr.S always said that he'd never seen it in any of his patients, and he's treated alot of women.

I am positively evangelical about him and his treatment - it makes me really cross that this isn't readily available on the NHS, as it's cheap to treat and it has been around for years now, so has been proven to be safe. I think the NHS attitude to mc is very much "it's natures way", and it evidently isn't for many women.

Good luck - fingers crossed for you xx

[BagofHolly]

Dr Beer's book is amazing, isn't it? I used to obsess over my NK results and study them in the book each time! Did you self refer to Shehata? I wish all this was on the NHS - we spent a FORTUNE! worth it though!

[freelancegirl]

Sounds fascinating! Is there nothing they can give you to ease symptoms in daily life or are you ok now? I guess there is a time limit to taking steroids.

My autoimmune disease is hashimotos so it (now I take thyroxine) doesn't cause me a lot of day to day pain or discomfort. I was sitting up until 2am reading Dr Beer's book (some light bedtime reading...) and I find the whole autoimmune thing fascinating. A bit bloody irritating that the body feels it wants to kill of its own offspring but interesting nonetheless.

[BagofHolly]

I was hungrier, but I seemed to taste and appreciate food more. My joints felt great, I had loads of energy and my skin was fab! I have a history of auto immune illness and the steroids damped that down. I was on 1mg dexamethasone, and felt belting!

[freelancegirl]

Missing your steroids...? Am looking forward to them already...No serious side effects then? Am not looking forward to the weight gain potential - am already 10lbs heavier after mc and finding it hard to lose. Am hoping I will get pregnant and get a nice dose of morning sickness Congratulations on your 3 boys, how lovely and what a great success story.

Thanks Pink I think it is mattsmama that I have 'spoken' to before on the freak out thread but it was a long time ago. Took me ages to get an appointment with Mr S, eventually I went private, so I have been in a bit of a limbo with not much to add to that board. But soon will be starting treatment. I will drop in again if they don't turn up here.