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Conception

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TTC/Pregnancy on Prednisolone or similar part 4

993 replies

digitalgirl · 19/12/2011 11:28

A positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Part 3 here

Part 2 here

Part 1 here

OP posts:
Arianrhod · 10/01/2012 16:09

Thought I'd update the list to tentatively stick myself back into Waiting to ovulate, since AF arrived yesterday, bang on time, which was a bit of a surprise.

Tues 10th Jan
BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 31+3 Due 10/03/12 next scan 13/01

2nd Trimester
Digitalgirl - High NKC - BFP cycle#2 26+1 Due 16/04/12 MW appt 25/01
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 22+6
Comedy - V High NKC - BFP cycle#2 ? 20+3 due 26/5/12 next scan ?
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 20 Next scan March
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 19+3 next scan?

1st Trimester
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 12 Nuchal Scan 12/01/12
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 11+5 Next Scan 10/1/12
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 8+3 Scan 11/01/12
Cornflakes30 - V High NKC, underactive thyroid, intralipids, prog, 8+3 Next scan 11/01/12
coleyoz - V High NKC. TTC #2, BFP cycle2, 8+1, Next scan 11/01/12
picolina123 - V High nkc, pred cycle 1

TTC
Waiting to test
Janethomas
Snoopygirl - V High NKC TTC, #3, testing 10/11th ish
eurochick - High NKC, superovulation cycle 1, pred cycle 1, period due 13thish. Maybe.
Havingkittens - Upgraded from High to V High NKC TTC #1
Hopefulfor2nd - High NKC - TTC#2

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
PQ77 - V High NKC TTC #2 (BFP cycle one but mc)
buster76 - V High NKC, Factor V Leiden
Arianhod - V High NKC, MTHFR homo, hypothyroid, TTC#2

WTTC
duggs1976 - High/V High NKC - TTC #1 - awaiting hysteroscopy, then superovulation cycle3
ScooterChaser - V High NKC - TTC#2
ChoccyPud - V High NKC - TTC#1, review w/Dr S 14 Jan.
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1 from January
AandRmum - High NKC
Suemays - High NKC, TTC #2

Arianrhod · 10/01/2012 16:11

Ha! Can't even spell my own nickname right, doh!

Try again, and hope I don't mess something else up!

Tues 10th Jan
BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 31+3 Due 10/03/12 next scan 13/01

2nd Trimester
Digitalgirl - High NKC - BFP cycle#2 26+1 Due 16/04/12 MW appt 25/01
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 22+6
Comedy - V High NKC - BFP cycle#2 ? 20+3 due 26/5/12 next scan ?
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 20 Next scan March
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 19+3 next scan?

1st Trimester
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 12 Nuchal Scan 12/01/12
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 11+5 Next Scan 10/1/12
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 8+3 Scan 11/01/12
Cornflakes30 - V High NKC, underactive thyroid, intralipids, prog, 8+3 Next scan 11/01/12
coleyoz - V High NKC. TTC #2, BFP cycle2, 8+1, Next scan 11/01/12
picolina123 - V High nkc, pred cycle 1

TTC
Waiting to test
Janethomas
Snoopygirl - V High NKC TTC, #3, testing 10/11th ish
eurochick - High NKC, superovulation cycle 1, pred cycle 1, period due 13thish. Maybe.
Havingkittens - Upgraded from High to V High NKC TTC #1
Hopefulfor2nd - High NKC - TTC#2

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
PQ77 - V High NKC TTC #2 (BFP cycle one but mc)
buster76 - V High NKC, Factor V Leiden
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2

WTTC
duggs1976 - High/V High NKC - TTC #1 - awaiting hysteroscopy, then superovulation cycle3
ScooterChaser - V High NKC - TTC#2
ChoccyPud - V High NKC - TTC#1, review w/Dr S 14 Jan.
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1 from January
AandRmum - High NKC
Suemays - High NKC, TTC #2

freelancegirl · 10/01/2012 16:38

Thanks for that Ari. I think PQ also needed to be moved up to waiting to test, if you wanted to do the honours whilst you are at it?

Picolina the password is something the private patients get when they use the site. I wouldn't worry though, if Mr Shehata says you don't need intralipids, then I would say you don't need them. He has a different protocol for everyone and I do know there are people on NHS treatment who have had intralipids (although they have had to pay for them). So am pretty sure if you needed them he would have said so. Worrying about your redundancy!

Digi what does the GTT involve - for those of us who haven't yet made any 2nd trimesters. Am assuming it's for gestational diabetes and it involves drinking some nasty sweet stuff...? I think Pred makes your blood sugar a bit odd so that might make us all at more of a risk?

I got stretch marks at puberty too but then none when I put on a lot of weight v quickly when my thyroid problem kicked in at the age of 21. I put on three stone in around 8 weeks! I never quite got the elasticity back which was annoying. But yes PQ Clarins sounds like a lovely treat, I might well do that.

Cheerfulcharlie · 10/01/2012 17:38

Tues 10th Jan
BFP
3rd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 31+3 Due 10/03/12 next scan 13/01

2nd Trimester
Digitalgirl - High NKC - BFP cycle#2 26+1 Due 16/04/12 MW appt 25/01
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks 22+6
Comedy - V High NKC - BFP cycle#2 ? 20+3 due 26/5/12 next scan ?
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 20 Next scan March
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP Clomid cycle#3 - 19+3 next scan?

1st Trimester
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. BFP#1 12 Nuchal Scan 12/01/12
Cheerfulcharlie - V High NKC, MTHFR/TTC#1/ (metformin, intralipids, no pred). 11+5 Next Scan 12/1/12
batteryhen - High NKC, factor v leiden. TTC#1 BFP cycle 3. 8+3 Scan 11/01/12
Cornflakes30 - V High NKC, underactive thyroid, intralipids, prog, 8+3 Next scan 11/01/12
coleyoz - V High NKC. TTC #2, BFP cycle2, 8+1, Next scan 11/01/12
picolina123 - V High nkc, pred cycle 1

TTC
Waiting to test
Janethomas
Snoopygirl - V High NKC TTC, #3, testing 10/11th ish
eurochick - High NKC, superovulation cycle 1, pred cycle 1, period due 13thish. Maybe.
Havingkittens - Upgraded from High to V High NKC TTC #1
Hopefulfor2nd - High NKC - TTC#2
PQ77 - V High NKC TTC #2 (BFP cycle one but mc)

Waiting to ovulate
Cherrycheeks - V high NKC, TTC#2
buster76 - V High NKC, Factor V Leiden
Arianrhod - V High NKC, MTHFR homo, hypothyroid, TTC#2

WTTC
duggs1976 - High/V High NKC - TTC #1 - awaiting hysteroscopy, then superovulation cycle3
ScooterChaser - V High NKC - TTC#2
ChoccyPud - V High NKC - TTC#1, review w/Dr S 14 Jan.
Lemonsherbet - awaiting results
Breezyweezy - V High NKC - TTC#1 from January
AandRmum - High NKC
Suemays - High NKC, TTC #2

digitalgirl · 10/01/2012 20:26

Good luck getting back on the ttc wagon ari

free I was referred for the gtt because of my pcos and family history (father has type 2 diabetes). I had a basic fasting glucose test earlier on in the pregnancy and then a glucose tolerance test today. I had to fast from 9pm last night - only water allowed. Then have my blood taken first thing (which ended up being 9:45). Then drink a warm, very sugary solution. And then have blood taken an hour after I've finished the drink (which can take a while because it's so horrid), followed by another blood test two hours after finishing the drink. Then I could eat. Apparently results will be posted. Although I imagine if I test positive for GD they'll be calling me up asap.

Saw a poster in the hospital today advertising the homebirthing team. I don't want to give birth at home - but I do like the idea of showering in my own bathroom and being tucked up in my own bed afterwards. If only the homebirthing team included a surgeon and an anaesthetist - just in case.

OP posts:
joycep · 10/01/2012 21:06

Hi Ladies, I hope you don't mind me barging in. I have been trying to conceive for 20months now. I got pregnant pretty much straight away back in June 2010 when we started but nothing since...well apart from one month last year where I'm pretty sure I conceived. They can't find anything wrong with me or my husband - had hsg, iui, clomid, gonalf injections (even though i ovulate every month) and nothing. My gynae told me 97% of her patients would have conceived by now Hmm. Anyway, I was going to take my GP's advice and sit back and 'relax' for 5 months or embarking on the IVF route. But this immune thing is bugging me and I feel I should perhaps pursue getting tested. I have no basis for this feeling apart from that I never get colds which I find weird as I always use to get them. It has been about 6 years since I last had one and I haven't been ill in 4 years. Perhaps I just eat healthily but I still think it's a bit strange! Other than that I don't feel like I'm conceiving so perhaps immunes aren't the problem.

So do you think I should wait to do the immune testing when I get to ivf and do it in the same place. I think I will end up going to ARGC. Or is it better to do it now with Dr S just to check? Would his results be able to be transferred across to the ARGC? My concern is the cost as I have just been rinsed for the last 9 months by going privately. If I do find out I have high NK cells and need treatment there is still no guarantee I will get pregnant naturally and I still may have to go down the ivf route and so don't want to pay for more tests....if that makes sense.

Also, I have no idea what sort of costs are involved in seeing Dr S. Would someone be able to enlighten/frighten me??

Thank you ladies. Good luck everyone.

hopefulfor2nd · 10/01/2012 22:15

Hi joy, I'm pretty new to this myself. Just started treatment for high nkc. I don't need ivf or anything at this stage but understand your fear of cost.
I had many tests on the nhs, which were all normal, before deciding to spend money and see Mr shehata ( f.y.i my history is 1 m/c, then my daughter, then once starting ttc last yr had 5 m/c between Feb and Oct). And I'm so glad I did! It's given me confidence to be finally told yes there is a problem and he really thinks he can help.
Yes, it is a chunk of money but if u test positive you may not even need ivf.
I'm sure the other ladies will have lots more info for you
Good luck for whatever you decide x

eurochick · 10/01/2012 23:23

Hi joycep.

I justified the cost to myself by reasoning that an immunology issue could cause IVF to fail so it made logical sense to cover that off first (not to mention the physical and emotional cost of IVF).

I was tested for the immunology stuff and blood clotting issues all in one (and the blood clotting tests are pretty spenny - you might decide not to have those) and the bill for first consultation and the tests was around 1100. And then another couple of hundred for the follow up consultation. And then you end up paying for the drugs on private prescription if a problem is found (unless you have a compliant GP who will convert the prescription to an NHS one for you). It's not a cheap route, but you could have all the test and about 6 months of follow up consultations and drugs for the cost of about half a round of IVF, so it is a lot but relatively "cheap" compared to other fertility treatments.

Have a look on the immunology boards on fertility friends. There is a lot of info on there (but no mention of Mr S - I think he asked to have his name removed a while ago). Other drs seem to do a wider range of immunology tests, but then the treatment seems to be the same so you need to weigh up whether you want that. This thread is a bit biased towards Mr S because I think we are (almost) all his patients. He is a pioneer in the area though.

I am one of the most recently diagnosed on this thread, so I am sure someone with more info will be along soon.

duggs1976 · 11/01/2012 07:21

Hey joy I did embark on the IVF journey ( if nothing else but to get some chromosonally good embryos lined up after trisomy 2nd mc). Went to lwc and there r tests they make u do there anyway before starting. Nk cells is one costs £600 but I chose to spend £300 on dr s and the other £300 on nk cells testing. This was back in Aug after my 3rd mc. I was v shocked to find I had raised nk cells. I stopped the IVF route and here I am still waiting to get PG naturally. But I think for some of us high nk cells are the by product body response to so many mc. It indicates other possible factors. The other tests I got on nnhs. TEG came back normal yesterday at st marys and dr rai advised me NOT to take asprin in my case.

To answer your q best I'd say throw £600 at it otherwise you'll kick yourself for an expensive mc if the nk cells r raised. If they r then IVF with steroids or intrallipids on embryo transfer isn't much of a hassle on top of IVF anyway.

Have u considered IUI or super ovulation out of interest? I too am v interested in IVF with CGH to get some good embryos in the freezer. X. Hope this helps

duggs1976 · 11/01/2012 08:12

Sorry just re-read your post !!you've pretty much thrown everything at it so I see IVF is your next step. With the cost of it £600!is worth it just to be sure.

duggs1976 · 11/01/2012 08:19

cornflake we r here if you need us? Not sure of your status now? Btw there are quite a number of ladies whos first pregnancy on dr s plan didn't work out but who seem to be ok now on 2nd. There is a group starting on 2nd this month. ESP v high ladies and free is pinoeering. Just letting you know.

freelancegirl · 11/01/2012 08:55

Hi all, nice to see you Joy and thanks for popping in! I don't want to diagnose people (but I have done before as an over-researching, Dr Googling thyroid patient Grin ) but I personally would get testing for high nk cells. Especially if you have a feeling about it. I had a feeling about it and, technically I hadn't had any consecutive mcs at that point, and it turns out I am very thankful I was tested.

As Euro can testify it seems that high NK cells don't only cause miscarriages but can cause problems conceiving in the first place. A case in point is one of my best friends (who might be lurking!) who has has around three rounds of IVF (her and has husband had no diagnosed problems either) after trying unsuccessfully for years. She had one chemical on IVF and then when she has a mc the next time I marched her straight off to Mr S. I just 'knew' somewhere deep down that her issue was going to be nk cells too. But then I do know her very well, know about her childhood eczema, asthma, hay fever, know her dad has arthritis etc etc. Do you have anything like that in family.

First thing I would say is buy Dr Beer's Is Your Body Baby Friendly. Again, my personal opinion is that it would be worth checking before you embark on IVF, even if it is just a case of ruling it out. Obviously I know it's expensive but it might save you money and time in the long run.

Good luck with it! And feel free to ask any questions. Not that we're experts, but we do talk about it a lot :)

Cornflakes I know we haven't heard from you for a few days and I have an awful feeling that the post on the BC boards about having another miscarriage is from you. I do hope you're ok. When you feel up to it do come back and chat. A few of us have had miscarriages when on the treatment and can relate to what you are going through. Our thoughts are with you and we are here for support.

Digi - loving the idea of the home-birthing team including an anaesthetist and a surgeon. Oh and a cleaner and a cook too! gtt test doesn't sound much fun but yes, hopefully you don't have it.

I am off to my GP today to see about my referral to Epsom. Hope she's feeling flexible!

cornflakes30 · 11/01/2012 09:20

Hi all sorry it's taken so long to update you ... Been a whirlwind of a few days, I went to the epu Monday morning at st helier and unfortunately had it confirmed as a miscarrage, the baby was still 6.5 weeks in size andno heartbeat.
I knew on sunday really it was like my body knew it was ver, i spentthe day in tears devastated , I was booked in for the Erpc yesterday so it's all over now, it's the first time I have had the procedure the other 4 miscarriages I did naturally, I must say that it has been easier to cope with this way, either that or I'm just getting harder I don't know. I nearly backed out on the way I said to dh I want to go home. Ant have been easy for him either.
I have to say the staff at st helier were all so lovely and understanding and made the whole process nicer to cope with.

One of my friends had a cesarean on Monday in the ward above me, so I went to see her after yesterday and she has a gorgeous little boy, and in a weird way I'm so glad I saw her it made me feel a hope.

I'm back at home on the sofa and getting lots of care from dh, eating my way though the tins of sweets from Christmas. He even bought me in a Brie sandwich after yest bless.
I have booked my hairdresser to come and revive my roots tommorow so hoping that will cheer me p.

I was so positive when i fell pregnant and felt blessed it happen on the 2nd cycle and about dr s treatment and I'm trying really hard to be positive but my nk cells were 3.8 so v v high and I'm so worried that am never going to get there. How may times do I go thought it....
Of course I'm still on the steroids and have to wean off as I was 9 weeks so it's going to take a couple of months before I'm back to normal and can start trying to conceive again, I'm booked in 6 weeks time with the clinic so just have to keep busy till then.

Thankgodfor this forum and having you guys to talk to.

Sorry if I have waffled on...

Kittens happy belated birthday I hope it was dab

Stroganoff congrats only 9 weeks to go amazing.......

Dugss hang on in there..

Free... Not long good lunch with the scan

Thanks for all being ther xxxxx

cornflakes30 · 11/01/2012 09:20

Whoops free not lunch good luck even haaa

freelancegirl · 11/01/2012 09:27

Hi Cornflakes. So, so sorry you have been through all this again. I had my first ERPC in the summer (on treatment too) and I have to say that it definitely does make it a lot easier. I worried like you mentioned that I had become hardened to it, but I just think it gets it over with quicker. Yes it is a bummer coming off the steroids too. I remember I felt very tired for a few weeks and had some weird side effects so do look after yourself and know that your body is having to adjust to a lot of weird hormones as well as drug withdrawal.

My levels are as high as yours (well, 3.79) and I know that Mr S says this makes it more challenging but equally there are plenty of people who have babies at this level and higher. Are they going to test the 'products' this time? You might just find this miscarriage was something unrelated like a chromosomal issue. I think that was what happened with me last time, but I didn't get to see a heartbeat or foetus that time (it must have been absorbed very early, even though I got to 8 weeks in the end) and I realise it is more upsetting in a way for you as you did.

In the meantime just take it really easy and look after yourself and take heart that for most people, in the end, the treatment really does work. It just might take some of us a few goes at it, that's all. Sad and horrible, but worth it in the end. And like you said, there is a lot of hope to be had. Justifiable hope too!

hopefulfor2nd · 11/01/2012 10:05

Cornflakes, sorry to hear it worked out that way. I never know what to say but keep going, Mr s will get u sorted, get all the r and r you can get and enjoy lots of cuddles with Mr Cornflakes. Also, look at our ladies who m/c on treatment and are now preg again for inspiration - I know I do!
Hugs x x

lemonsherbet · 11/01/2012 10:11

cornflakes just wanted to say how sorry I am that you are going through this again. I know what you mean about becoming more hardened to it. My last miscarriage I just wanted to get it over and done with so we could start again. That does n't mean that it didn't hurt just think I became used to it. Though I also had the advantage of last time not having seen a heartbeat, which does make it all the more devastating.

I just wanted to say that I am thinking of you and I hope you are getting to sit on the sofa eating soft cheese and drinking plenty of wine.

snoopygirl · 11/01/2012 10:20

cornflakes sorry to hear that, also saw you on other board but was hoping it wasn't you. Like hopeful said try to focus on other ladies whom have mcd but whom are now pregnant. Big hugs.x

I'm off to see Dr S this afternoon to try and get bloody pregnant on Super O if he'll let me go on it. Although still testing this week but nowt so far.

eurochick · 11/01/2012 10:24

cornflakes I am so sorry to hear your news. I hope your sofa time and pampering eases the pain a little.

I am at the end of my first pred cycle and I don't think it has worked. I tested this morning (12dpo) and got a BFN. I haven't felt any pg symptoms this cycle so I think I am out. Do most of you stop the pred before you get your period or wait until it comes? I'd like to get as much pred in me as possible as I started on it late this cycle as I didn't think I had ovulated, but I don't want to keep taking it if it is likely to delay my period and prolong my agony!

free I hope your GP is feeling cooperative. I haven't seen much evidence of the much vaunted "patient choice" on the NHS I have to say.

freelancegirl · 11/01/2012 10:37

How many days have you been on it Euro? I deliberately took mine a day or so after ovulation so I could definitely take it for 14 days before having to stop. I didn't get a BFP until 14DPO. Might be relevant to both you and snoopy. Hello Lemon and Hopeful too!

PQ77 · 11/01/2012 10:43

so sorry cornflakes. bring on sushi and soft cheese and caffinated beverages (not to mention alchohol). It is just so devastating isn't it when you have your hopes up that the treatment is going to work this time. But as everyone says we have lots of inspriation to draw from this board.

I found the recovery from my ERPCs fantastic, back at work a couple of days later etc so I hope you have lots of lovely sofa time. And getting your roots done! What a great idea. I don't dye my hair when I am pregnant in first trimester, or might be, so am beginnging to look a bit skunk like at the moment.

hi joy - sorry not much to add on the costs side as up to now I've been very lucky to be covered by insurance (investigation of and then treatment of mc as I mc on the first cycle). Will have to reach into my pocket for the first time this cycle unless I mc again. BUPA are begining to get a bit Confused about the constant claims for ERPCs etc. I had an argument with them the other day saying yes, it is indeed incredibly bad luck to have two mmc 5 months apart.

igginezerscrooge · 11/01/2012 10:56

Hello, just saw Cornflakes' news, am so sorry.
When I miscarried after starting steroids I thought I was the one this treatment didn't work for, had very little hope. I know I'm not in the clear yet, but I never imagined after mc#4 that I'd be sitting here at 20 weeks. Don't give up just yet. I don't think you're hardened by the way, I too found my one ERPC easier in some ways - it drew a line under it more quickly, I think, and was less lonely than mc at home.

Arianrhod · 11/01/2012 11:10

cornflakes so very sorry to hear your news. I saw the post on BC and wondered if that was you. My first MC I had an ERPC and it definitely did make things so much simpler than I've heard others' natural miscarriages were, so don't fear you've become hardened to it all. I am still hopeful even after MCing on Mr S's treatment plan, I think in my case the egg was at fault rather than the steroids didn't do their thing. Hopefully the same is true for you, hang in there!

Welcome joy - I think the other ladies have covered it, but I would say if it were me I would definitely be wanting to get at least NK cell testing. Maybe you are just a very, very healthy person indeed, but not even catching a cold in 6 years seems too much of a coincidence to me, maybe?

/waves to everyone, snoopy good luck for your appt this afternoon!

snoopygirl · 11/01/2012 11:20

Thanks ari not looking forward to 2hr drive each way. Catch up later x

eurochick · 11/01/2012 11:25

free thanks for your reply. I've been on the pred 8 days now. The info sheet from Mr S says to take it for 10 days and then test. But because I didn't realise I had ovulated at first (it was very late, I didn't feel it and my temp rise was not really noticeable for a few days) I didn't take the first one until 5dpo. I'm 12dpo now and would expect my period to arrive tomorrow or the next day under normal circumstances.

If pred doesn't delay your period, I can just keep taking it until it arrives, so i would love to know what other people's experiences have been on it.