TTC or pregnancy on prednisolone or similar part 11

(1000 Posts)
Buzzybee123 Mon 19-Aug-13 22:25:50

This is 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!

TheAccidentalExhibitionist Mon 19-Aug-13 23:54:45

Hi Buzzy I like the new thread smile
Thanks for setting it up.

there you are.
hi buzzy and accidental. smile

freelancegirl Tue 20-Aug-13 12:02:48

Thanks *Buzzy! Well done.

Carrying on from the last thread Accidental that's pretty shit. Yes Ive heard about the connection with Lupus. I have thyroid disease and was diagnosed at 21 but I wouldn't be surprised if there is more in the family. I think we are far more progressive in the UK in terms of age and pregnancy. Even years ago plenty of women were still having babies in their 40s, it's just a big thing wasn't made of it. It's shit though, when someone points it out as, I don't know about you but at 39 I feel very young still!

Mollie a big virtual hug for you.

Mel3062 Tue 20-Aug-13 12:25:05

Thanks buzzy.
I'm feeling abit rubbish today I think it's after effects of the uterine biopsy?

Tumtimes1 Tue 20-Aug-13 13:17:12

Hey hey! Found you all. xxx

Tumtimes1 Tue 20-Aug-13 13:32:09

Hugs to Molly - mate I'm thinking of you. x

Accidental, that must be annoying to be told you should "expect" this at 40. I see why you're heading in with Dr S.

Me too. Even though I went for a consultation with Dr Gorgy after seeing shehata, we realised we couldn't afford all of Gorgy's further tests. Therefore we are going with Shehata and hoping that the prednisolone, the progesterone, baby asprin, high dose folic acid, vitamin D and omega 3 oil prescribed will be just enough to sustain a pregnancy that doesn't end in miscarriage.

I am on CD1 today (FINALLY) so feeling optimistic about the month ahead. I have my Clear Blue Fertility Monitor all reset (surprised batteries still work in it to be fair) and am ready to go. I have an appointment to see Shehata on 9th Sept to get a load more pred as will have run out by then too.

My personal concern on all of this is, that whenever I have gotten pregnant before I have AWFUL migraines with aura. These can last up to 12 hours and feel like a stroke as effect my speech and vision and end in vomiting. These get 10 times worse when pregnant and I can't help thinking (after reading up on this) that docs should be looking into this and thinking this may be something to do with the miscarriages. Should I be on a blood thinner for example?

I have a long awaited neurology appointment at my NHS hospital in 2 weeks and I will be very interested to see what they say on this.

Aaaanyway, sending everyone my love xxxx

tums will the asprin not thin your blood. maybe some clexane would help. I'm just guessingwink I really have no idea. have you mentioned it to Mr s?
accidental I hope you get along better with Mr s. sounds complete rubbish to me what the other doc said.
hugs to mollie I'm glad your getting support from ladies on this thread as well as in the real world.

mollieboo Tue 20-Aug-13 16:32:20

Thanks Buzzy, hi all.

Tum I was thinking of seeing Dr Gorgy, but can't really afford it! I wonder what he would do differently if anything. Tum do you know if his treatment would differ? I rang a local ivf clinic today where I was having intralipids. I spoke to one of the doctors who has an interest in recurrent miscarriage and there didn't seem much else to change apart from using ivig which I won't do as its so expensive and there's no proof it's more effective than intralipids according to the doc. Seriously wondering if we can afford to remortgage house to try using surrogacy instead.

Tumtimes1 Tue 20-Aug-13 16:49:29

Hi Mollie xx Well when I went to Dr Gorgy the tests that he offered in comparison to Shehata were much more detailed and also seemed to be in addition. So I would say it would be worth a consultation at the very least which was about £170 I think?
xxx

mollieboo Tue 20-Aug-13 17:03:08

Thanks for the info tum. Hmm decisions, I guess I need to explore every avenue before trying again, if I ever can. Your migraines sound awful when pregnant, you would think these things should be addressed xx

Thanks again all for support x

duggs1976 Wed 21-Aug-13 08:10:53

I guess the main difference for me was that dr Gorgy also looks at hidden infections, sperm DNA fragmentation and more detail at the immune factors. He also looks at the compatibility issues between both partners. if you can only afford dr s then hopefully his towline pred will do the trick... Otherwise i prefer dr G because I am biased as he picked up the hidden infections and sperm DNA fragmentation 2 yrs later which dr s still doesn't acknowledge despite this not being a controversial area, just the USA is further ahead so samples get sent to Chicago. I am not sure those things are a factor for you guys? Humira is what he's been using for a while, dr S has actually caught up on that one this year it seems, so I would see how you go with him. Failing that I am a huge advocate of traditional Chinese medicine and looking into your immune issues at same time to try to get a more natural harmonised body overall which can only help the conception environment. Best of luck.

Mel3062 Wed 21-Aug-13 08:51:59

I agree with duggs, if you can afford to see him it may be worth exploring other "open" opinions.
I'm def going to persuade oh to get bloods done with him as I feel I have to explore what I can.
Good luck x

Tumtimes1 Wed 21-Aug-13 09:14:55

I agree, if this doesn't work with shehata, we're getting a loan and going to Gorgy to get the tests Duggs outlines above xx

mollieboo Wed 21-Aug-13 09:50:53

Thanks Duggs, very helpful. I wonder would Dr G's theory would be about 20 week loss. I would need a loan, we're at a crossroads now thinking do we go for more tests and try again or go down the surrogacy or adoption route.

duggs1976 Wed 21-Aug-13 17:52:26

Mollie - you are still waiting for test results back aren't you? It may well be that there was a chromosomal abnormality? I had trisomy 13 with a baby girl 2 yrs ago patu syndrome which can go to live birth - but is very disabled and on average babies only live a year. Apologies if I am stating something very obvious and that you've already mentioned (I don't recall you have but I may be mistaken). If it is something like that or sues situation with Scarlett then it might not be related to anything that could happen again?
But the Uncertainty is the most difficult to swallow, because no one will ever know for sure as there seems to be no rhyme or reason or sharing out of suffering. I think you might be surprised by these doctors insistence that you try again and do everything you did once again.

mollieboo Wed 21-Aug-13 18:13:12

Duggs you are very right, it may well be that something will be found, I'm looking too far ahead as usual. The consultant thinks its highly unlikely that it will be chromosomal as there were no markers and the baby looked normal. So I feel that I'm waiting 3 months just to be told they don't know what happened. I hope I'm proved wrong though. I am finding that doctors are keen for us to try again as its highly unlikely to happen again, but of course it's easy for them to say that, the risks feel huge for us after so much heartbreak. Where are you at the moment in this crazy game duggs?

duggs1976 Wed 21-Aug-13 19:19:21

It's a long time to wait. You seem amazingly strong mollie. I hope real life people realise just want an amazing person you are. Your strength is astounding. As for me- I'm supposedly 7 wks pregnant but after a 6 wk scan at st Mary's last week which was on for dates but just gestational and yolk sac seen (which I'm told is pretty normal ) I couldn't face going back this morning. So just ticking along with head in sand until I bleed or get forced to have a scan which shows a missed miscarriage. Either way I wish time would pass as most of the pregnant folk do and the others wish time would allow them to get going again. Huge hugs mollie you really are an inspirational woman. X

mollieboo Thu 22-Aug-13 12:08:36

Hi duggs, really hope this one is the one for you. I really admire the way you can hold out and wait. Thank you for the kind words. People in work tell me I'm strong, I wish I didn't have to be though! I'm in tears every day at the moment and I wonder why I have to go through this hell. But the only thing that keeps me going is the thought of getting my family one day. I think we're all strong on here though! X

Tumtimes1 Thu 22-Aug-13 14:10:34

Hi Duggs, are you booked in for reassurance scans weekly at St Mary's? xx

Tumtimes1 Thu 22-Aug-13 14:21:29

Mollieboo do you know how long it might take to get the results, is it 3 months as you mention above?? xx Thinking of you everyday x

duggs1976 Thu 22-Aug-13 19:19:44

Oh mollie. X
Tums yes I was but didn't have a great experience last week at 6 weeks, they were a bit doom and gloom because there was only a gestational sac and yolk sac, so have decided to opt out and see if I can just try to forget about it all until 9wks. If I mc before then do be it. At least at 9 wks if there is no hb then it will be pretty conclusive. I don't feel brave, just hiding really, trying to avoid what I don't want to hear.
Hope others are fine.

mollieboo Thu 22-Aug-13 21:59:43

Thanks tum, yes 3 months, such an agonising wait.

Waves to all x

Tumtimes1 Fri 23-Aug-13 10:40:59

Hiya Duggs. Its very normal to have that at a six week scan isn't it though. I can fully understand why you are doing an "ostrich" though, its so hard to keep going through this.
Actually Duggs, I tried to PM you to get your back story as I can't find it on here, for some reason my message thing doesn't work :-(.
Me and my OH keep saying its just a "process" and we have to go through the "process" to get to the end result.

Mollie sorry but why is it taking 3 months? How agonising for you! Is this because tests have to be so extensive to get all the info? xxx

ChoccyPud Fri 23-Aug-13 11:03:02

Hi all!

Mollie I can't believe you have to wait 3 months that's agonising. Thinking of you.

Duggs you do whatever feels right for you.

All's well with me just haven't had a chance to update. Had scans with Mr S and at FMC on Tuesday and measuring either 10.3 or about 11 depending on whose measurements you take. Was actually 10.1 so definitely ahead! Baby looks fine so far all as it should be. Had the Harmony blood test and going back to FMC in a couple of weeks for 12 week scan and Nuchal test and results of Harmony.

It is so so weird to "only" be worrying about chromosomal problems like "normal" people having finally got through the NKCs danger period. As long serving members of this thread will know I've been used to posting one lot of bad news after another over the last two years and sometimes felt like I'd never even see a hb. This is pg no8 btw... It's seeing good news on here that's helped keep me going and I hope that my good news (so far - always gotta caveat!) helps others stay hopeful too.

Of course as we know all too well from Sue and Mollie its not certain even after you're through the magic 12 weeks. I'm just trying not to worry TOO much, and remember that there's nothing I can do about it if there is a trisomy. And be comforted that I'm still feeling sick and tired in the afternoons and evenings despite the Pred!

Waves to all smile

Tumtimes1 Fri 23-Aug-13 12:52:00

Wow thats wicked choccy! I love hearing such good news and such positive feedback xxx

Tumtimes1 Fri 23-Aug-13 12:52:32

Just out of interest choccy how long do they say the NK cell danger period is for then? xx

Arianrhod Fri 23-Aug-13 13:11:22

choccy So damn pleased for you, I just can't say how much! smile

freelancegirl Fri 23-Aug-13 13:25:26

Choccy that's amazing news, I'm so pleased for you. Yes the theory is that over 9 weeks is a huge hurdle for treated nk cells so that's amazing. Yes of course things can still go wrong as we know but there is every reason to be optimistic.

Duggs I don't blame you for skipping the scans, you'll go straight to knowing for sure at the next one. I think I would do the same in retrospect.

I'm at my parents place at the moment but will be getting in touch with those of you who are going to be in the doc as soon as I get back.

Lots of love to all x

duggs1976 Fri 23-Aug-13 14:57:42

Wow amazing news choccy and very well deservedgrin well I caved this morning (didn't tell DH) and rushed off for emergency scan. Saw heartbeat but dates seem to be really off but at least there was one. They said 6+4 but I'm supposed to be 7+2?? confused Oh well got what I wanted I suppose. Now back to hiding.

Tumtimes1 Fri 23-Aug-13 15:15:45

Congratulations! Heartbeat is wicked and dates are only very slightly off. This is all looking very good xxxx

choccy that's amazing news.
duggs did they say much about the dates being off? thats really good that you saw the hb.
I've invested in a Doppler. used it first time yesterday I was really worried incase I couldn't find the hb and paniced my self. but I'm pretty sure I found it. apparently u can mix up the placenta and heartbeat.

duggs1976 Fri 23-Aug-13 16:17:08

No was a different scan place so she said sometimes 1mm can make a huge difference so I've got no consistency. Who knows what is really going on in there? Just hope it keeps growing like it should now.

duggs1976 Fri 23-Aug-13 16:18:02

Good Doppler news cartoon. Oh god another mentalling opportunity shock

I know duggs! a risky purchase I ummm'd and ahhh'd for ages. but I'm glad I've got it now. grin

Buzzybee123 Fri 23-Aug-13 18:20:26

cartoon I thought about getting a doppler but just know I would send myself insane with it, well done on hearing the HB

choccy that is brilliant news smile

duggs I measured small for most of my early scans, all is fine now

hi buzzy how are you coming along?

duggs1976 Fri 23-Aug-13 20:48:31

Yes buzzy where are you at??

Buzzybee123 Fri 23-Aug-13 20:56:10

Hey ladies I am now 17w5d, I had my 16 week appointment on Wednesday and they did a quick scan for me, they also booked in for scans for later on in the pregnancy, still driving myself mental, nearly had a breakdown an hour ago as boobs didn't hurt much blush i'm finding the build up to the 20 week scan more stressful than the 12 week one.

argh defiantly I had a major wobble at the beginning of this week, its what prompted us to get the Doppler. feel better now though. my 20wk scan is on 2nd Sept. whens yours buzzy?

Buzzybee123 Fri 23-Aug-13 21:28:51

not until the 13th sept when I'll be 20w4d, I did almost book another private scan

duggs1976 Sat 24-Aug-13 07:42:37

Buzzy!!!!!grin For some reason I feel like I missed your news when announced - how did I manage that ? Didn't we meet a few years ago in London at the first thread gathering ? You have a blond bob?? Am I right?

clabbage how are you?
buzzy I always think if you need a scan to put your mind at rest then have one. that's what I usually do.

teamdozie Sat 24-Aug-13 08:37:55

Hi everyone...

Thought id lost you all..
Its such good news for those of you who are progressing so well, i am so pleased..

You guys give me so much hope..

For those of you seeing Dr S are you getting scans every 4 weeks? He told me he would scan me every 2 weeks.. so if anyone is interested in purchasing a kidney please let me know..

I have a good feeling about this month and im trying to hold on to that positivity.. Fingers Crossed ladies.. (for us still trying)

xx

mollieboo Sat 24-Aug-13 08:52:49

Congrats choccy and duggs, great scan news.

Glad it's going well too for cartoon and buzzy.

Xx

freelancegirl Sat 24-Aug-13 12:07:58

Duggs that is brilliant news about the heartbeat. And great news too for Buzzy and Cartoon. I found a Dopplar really helpful. It sometimes took a while to find the HB but I always got there eventually. It's fast - like galloping horses sometimes. And then you can hear the wooshing of the placenta.

oh yeh free I can definatly tell the difference now I've heard both but I can see why you may mix them up. its so reassuring. used it every day so far blush . probably shouldnt though!

Buzzybee123 Sat 24-Aug-13 13:54:05

team you cracked me up about the kidney, he said that to me but i reminded him that I was under his NHS RMC and they should be scanning me every 2 weeks, to be honest I would find other places, I use babybond that charge between £59 to £99 depending on what scan you want, positivity is the way forward

duggs no that wasn't me, I have a red bob

cartoon I agree with you about the scans, I have calmed down a bit today but will see when babybond have a timeslot

freelancegirl Sat 24-Aug-13 15:12:54

I might need a kidney after my holiday!

duggs1976 Sat 24-Aug-13 15:33:44

Ahh muddling you up with breezy and thought I'd missed breezy bfp ?! Sorry buzzy. Free - a new kidney eh?! It's typical bank holiday weather here enjoy the Spanish sunshine. smile

teamdozie Sun 25-Aug-13 08:01:15

Hahaha Buzzy its either that or we take it out of the little ones pocket money.. lol..

He told me not to go to the hospital for scans as it may confuse me. I have got it right its a scan there at every two weeks? writing it all down seems too many..

When the time comes ill look into baby bond thank you.. I still fear the worst so i will probably go to the EPAU as well.. (God have to let go of this negativity)

Free have a great holiday.. and it will be a well deserved kidney too lol..

We just came back from a mini break needless to say im NEVER drinking again.. lol

xx

Buzzybee123 Sun 25-Aug-13 19:49:06

team I only had one scan with Shehata at 8 weeks, I had already had 3 at EPAU and I booked in a private one and had a reassurance scan with the NHS after that, I had no confusion what so ever, all you want to hear is that there is a heartbeat and all looks right for that stage. If it didn't then you could go and see him, but to be honest there isn't much he or the NHS can do if things aren't.

When I had a bit of bleeding he didn't say anything different to the NHS nor did he suggest anything different to the NHS. Maybe book a couple of scans with him, but the rest you can have elsewhere, he really sounds money grabbing to me

Clabbage Sun 25-Aug-13 20:45:23

cartoon thanks for asking after me. I have been in Cornwall for a few days. I'm doing ok. Still not publicly pregnant. Just want to get 20 week scan out the way. I'll probably think of another reason after that! I'm guessing my expanding waist may force my hand. I guess the fear will never quite leave. It's tricky for me as even when (if) this baby is born safely, an even more intense mentalling begins because of losing a baby to cot death.
choccy your news is joyous. I had the harmony test at FMU. The second scan was awesome. Everything is crossed for the right result.
duggs a heartbeat, a heartbeat. Yes! I totally understand the scan worries. I have done a lot of Ostrich impressions. Loads of luck. I really really hope this is The One!
team hang in there and buzzy is right, you don't need Mr S scans. It was my turning point for me. I was scanned on a Fri at EPU, measured v behind, poor growth from previous scan. He insisted (and I needed more meds) that I still saw him the following day (3 hour drive). He basically told me the same as EPU, tutted when I breathed at wrong time during scan, gave me no more meds,tried to convince me that if mmc confirmed, should have ERPC with him. Or come back if trying again ( thus ensuring another load of money). Absolutely no benefit to me at all.
Rant over!
cartooon buzzy so pleased all is going well. My 20 week scan is 4th Sept. so so nervous!
molllie you are never far from my thoughts xx

Buzzybee123 Sun 25-Aug-13 22:21:50

clabbage I am with you on the constant worry if I actually get a baby, I suppose this it what it will be like for the next 20 years or so, I can relate to feeling nervous feeling about the 20 week scan, I feel its more stressful than the 12 week, I am sure things are fine, are you going to find out what you are having

Clabbage Mon 26-Aug-13 08:31:01

Hi buzzy. No I'm not finding out. Will you? Or you cartoon?
As for worrying about the baby post birth. We no longer have a CONI (care of the next infant) in my area. This is basically a scheme supporting families who have experienced cot death. It was an absolute gem after losing Harry. It included being given a mobile apnoea monitor. CPR training and on going support. I need to do some digging to see if I can at least source a mobile apnoea. The ones you buy commercially are generally cot based. Sorry this is a bit of a negative subject but it is of course my reality. I don't want to give anyone additional fear x

what's an apnoea moniter? sorry if I'm being thick. also sorry you have that extra worry too clabbage
all our 20wk scans are quite close together aren't they ladies so at least we can do it together. I won't be finding out the sex, buzzy?

freelancegirl Mon 26-Aug-13 16:06:55

I have been very anxious about cot death Clabbage so I can only imagine how you have been after Harry. I think for me it is because although I know it is very rare so is recurrent miscarriage so I am aware that very rare things can happen.

I wasn't getting any sleep, so when DS was around 3 months I bought a Respisense Monitor that clips onto the waist band of the nappy. We used it until 9 months when he started sleeping on his tummy and the friction of his movement made the skin rub and sore round the monitor. After that I tried to relax but it was hard and I still find it hard. I find it very difficult to go to bed at night without watching him. I know how crap that sounds!

The monitor was £75 I think so not cheap and I've bought an extra £10 battery for it, so I was thinking of selling it but now I'm actually thinking of keeping it just in case there is a next time. Of course that depends on me a) definitely deciding there might be a next time b) trying again and being able to get pregnant c) being able to not have a miscarriage and all the other variables.

Apparently babies can and do die when they are being monitored but for me I felt it would be a chance to get there quicker. I did do an infant first aid course too. Not sure if it would do any good or not but it also enabled me to try to relax a bit more and not watch him every second just every two seconds

freelancegirl Mon 26-Aug-13 16:08:20

Oh so yes Buzzy in terms of anxiety it WILL be what is like for the next 20 years or so! I found the anxiety peaked in the first few weeks of having a tiny baby to look after and has been there all the time underneath like a dull roar.

Clabbage Mon 26-Aug-13 18:54:43

Thanks free. I will have a look at that one. I understand exactly what you say about being unable to view statistics with ease. I think 6mc's in a row is one in 15 000 women, so yes all possibilities become more real.
An apnoea monitor registers each breath (we had a box that ticked) and alarms after a given period of 'no breathing'. They are not for the faint hearted as you do get false alarms but I could not have slept without one. You can get ones that go under the mattress but for me this is no good. Without going into detail, my son didn't die in his cot. It's actually why medics call it SIDS not cot death, as it misleading. I have a particular bug bear about monitors being sold without Paedriatric first aid being taught. I have also heard of women who 'front sleep' their babies but say it's all ok because they have a monitor. It worries me that they potentially give women false confidence. I think that the same criticisms are made of dopplers, the argument being that natural instinct can be overridden by hearing a heartbeat. Again, I think for women like us, our instincts are so heightened due to our experience that they are a very good thing. Women like us are never going to assume bloody anything!
Off to look up respisense...thanks free x

freelancegirl Mon 26-Aug-13 22:10:55

Clabbage it must have been awful for you. I was reading this week about a lot of SIDS actually happening in someone else's care too and they are not sure why.

I find the whole anxiety about something happening is ongoing. I manage to keep a cool exterior but every minute of the day 'things that can go wrong' go through my head. Such as today we went to the zoo and I'm visualising dropping him in a cage, an animal breaking lose...but it's the every day stuff too like being run over etc. It's always on my mind but I don't tell anyone. Not sure if anyone else goes through that! And then I double bluff myself by thinking - oh well, if I've thought it it won't happen - but THEN if I double think that and think it WILL happen. Mad, I'm sure.

I've accidentally clicked onto threads here on MN and they've been about SIDS or similar then I can't get them out of my head. I lurked on the due in July thread when pregnant but wasn't confident enough about the pregnancy to post there and one of the babies died at 13 weeks of SIDS. It was awful.

Sorry - I realise I've probably gone on about it a bit much there. I guess I just wanted to say that the mentalling hasn't stopped - just changed. I see parents out and about and wonder if they are thinking the same or is it just me. I have no PND or anything by the way, other than all that am very happy.

duggs1976 Tue 27-Aug-13 06:47:29

Ummm it's interesting reading this free. I have been wondering about the longer term affects of RM. ( haven't even dared imagine the loss of a child once born). I naturally am a glass half full person. Too much so. I always have thought that whatever it was it would turn out ok in the end. Now I don't know what I think. I do imagine the things you talk about - I think of my anxiety at getting pregnant,IVF failure, chemical pg, early mc, chromosomal abnormalities all things I've experienced before. Then my mind wanders to late, mc,giving birth, still birth, SIDS, accidents in the home, the car, at school and I hate myself because any one can die at any point and as humans we have accepted that early on. I'm angry the balance has been skewed and will need to be extra aware that I will need to try extra hard to counter that balance. We have one life - just sometimes things happen that make you question if it is just all some random free for all as any theologians or philosophers out there will argue - best not think about anything too much or you'll probably not get out of bed. It is good to be able to be open about the irrational thoughts that my emotional mind has and my logical mind cringes at.

teamdozie Tue 27-Aug-13 07:37:04

Clabbage and Buzzy

Thanks for the info.. i must admit i have been worrying about costs etc but also what if i was only seen by him and i had another mc .. i wouldnt be able to go to the hospital i have been going to..

I have been going to a hospital in London as the one near me is HORRIBLE..

I just wanted to say that i hadn't realised the traumatic experiences some of you have been through and i want to apologise. I can only wish you all the best for the future..

God its 7.30 am and im blubbing.. whats going on lol?

xx

brownstag Tue 27-Aug-13 08:30:08

Free and Duggs, I agree it never stops unfortunately. My DS is now 4 and I still check his breathing every night when I wake up. I still have horrible images of this, that and the other happening, always thinking the thing that 'gets him' will be the thing that I didn't predict, so I have to try to cover every eventuality. I went through hell this year thinking he had lymphoma, couldn't sleep, couldn't understand why no one realised he was ill except for me. For me, the whole thing led to severe postnatal illness at 3 months and took a long time to resolve; I think if you're already inclined to anxiety as I am, the long-term effects of the stress of RM can be overwhelming. I suppose it's very difficult to accept you've finally got you wanted, so something's got to go wrong! I still take medication for my anxiety/supposed bipolar disorder and it is very good, but as it makes me put on weight I'm in a constant battle trying to find the perfect formula of minimum weight gain/minimum possible anxiety. In other circumstances, I think this kind of anxiety could be useful (as in my job of copyediting, being OCD-inclined helps me to do the best I can), but motherhood is a repetitive role with few breaks and few points at which you can say 'I have achieved this; it's finished and done!' about anything.
My God, that sounds negative! That isn't the whole story by any means, as my DS is my life, and I count my blessings every hour of the day, but it's the undercurrent playing while all the normal, good stuff is going on in the foreground.

duggs1976 Tue 27-Aug-13 08:54:52

I think our society cucooning us has made things worse. 100 yrs ago women had children and "expected" to lose some along the way at various stages. We expect everything. Expectation management...

Bakingtins Wed 28-Aug-13 20:07:31

Hi everyone. I posted a few times on the prev thread, but have not really become a regular. I have 2 boys and have had 4 MCs, one in between them then 3 in the last year all at 8-9 weeks. Thanks to some advice here we went to see Prof Quenby and I've been diagnosed with high uterine NK cells on a biopsy, my result was 16% and the normal is <5.
I have a phone appointment with her next week and I'd appreciate any suggestions about what I should be asking. Her protocol is 20mg prednisolone from a BFP until 12 weeks then taper off.

duggs1976 Wed 28-Aug-13 21:43:02

I remember you baking. So glad you have an answer. Folk with a child already seem to 90% have nk raised cells- it is pretty high and pretty good chance the treatment programme will work quite quickly if you conceive ok.
Wonder if she will prescribe aspirin or clexane too - doubt it but some dr.s do. You could ask her about intrallipids as apparently they last 3 mths so might be something in that to help calm them down from the offset? Let us know how you get on. X

Havingkittens Wed 28-Aug-13 22:57:49

Just popping in to apologise for not getting it together to send those books yet. Time just seems to disappear at the moment! I will try to get them out this week.

Free, I also have mental flashes of falling down stairs holding the baby, or things like cars careering off the road or people on bicycles on the pavement coming towards me and hitting us. He has started rolling over in his cot these last couple of days. I was hoping his sleeping bag would continue to prevent him rolling but he seems to have overcome that now and has slept on his side the last two nights. That I can cope with but he's rolled onto his front on a couple of occasions and I don't know what to do now. I've just wedged his teddy to act like a wedge to try and stop him rolling right over but now I have paranoid thoughts about him being smothered by his teddy. Oh dear!

Amazing to read that there is a flurry of positive news here. Especially for Duggs and Choccy. I have everything crossed for you both.

Havingkittens Wed 28-Aug-13 23:54:09

Just read that soft toys should be out of their cots, so that's put and end to that plan. And that once he's able to roll I shouldn't prevent him. Hey ho!

Bakingtins Thu 29-Aug-13 04:30:47

Thanks duggs good to read that you have had a positive scan smile
kittens both my boys have chosen to tummy sleep as soon as they could roll. Once they can roll over I think the SIDS risk drops dramatically. I'd go with no pillows or soft toys until they are older. 3 yr old currently asleep on his tummy in a heap of soft toys, bum in the air, completely under a tangle of duvet.....
I think when you've had a series of bad experiences, particularly when it goes well beyond "your share" of bad luck, it does skew your perspective and make you paranoid. I don't know how you get back any faith in the universe or justice.

Havingkittens Thu 29-Aug-13 12:32:52

Thanks for that bakingtins. I guess I'll let him do his thing. Although last night, ending up on his face made him wake up crying but I suppose that's OK. I think he gets a bit tangled up in his sleeping bag with all that rolling. I'm a bit sad that he has taken to sleeping on his side facing away from me as I can't gaze at his little face in the middle of the night now sad.

freelancegirl Thu 29-Aug-13 20:17:01

The sleep thing was one long stress for me kittens and I feel I only started to come out of that when DS was around 11 months. We got a sleep trainer to advise in the end, but I realise that's not the sort of issue you are talking about. I've heard of people tightly rolling up a towel on each side of young babies to keep them in place. How old is DS now - 4 months?

Brown sorry you have been through so much stress. I think it is more common than we think, maybe even for people who haven't had recurrent miscarriages. I know what you mean about thinking it will be the time you haven't imagined that bad thing happening that it happens. I now double think that - thinking that if I think it and then think it won't happen because I've thought it, that's when it will happen! Madness.

Oh when I interviewed Lesley Regan she said their research had shown that people who have had recurrent miscarriages might be more prone to heart disease and strokes at a later date. Great... Not sure whether that was just in terms of clotting issues that had been found.

freelancegirl Thu 29-Aug-13 20:21:20

Hi Bakingtins! Sorry, I forgot to say hello just then. Welcome back, I do remember you too. No specific suggestions really. It's funny how the treatment seems to be pretty similar with everyone. Hope you get results! Feel free to ask anything though as I am sure one or more of us will be able to help. You could ask if they do they do intralipids at all? And also when do you start taking the Pred - at ovulation?

Havingkittens Thu 29-Aug-13 23:08:31

I think that's just to do with clotting issues free. I remember thinking, and being told by other family members when I'd tested negative for clotting issues that in my quest for a baby I was somehow disappointed not to have clotting issues and being reminded of the bigger picture that although I hadn't found a cause that could be treated it was actually a good thing not to have clotting issues for those very reasons. I'm hoping that having high NK Cells is, back in the bigger picture, a good thing in that they will do their job later and bust any cancer cells that might try and make their home in my body.

Yes, my DS is about 4.5 months now (just 2 days younger than Jaffa's DS)

Bakingtins Fri 30-Aug-13 07:12:14

That was something I'm going to ask, actually, if having NK cells elevated has any implications for me other than reproductively. I seem to think Dr Beer linked these conditions with autoimmune diseases? Hope not.

freelancegirl Fri 30-Aug-13 09:26:19

I don't think so Baking. I think you're more likely to have high NK cells if you have an autoimmune disease - as that involves the body attacking itself - but it doesn't work the other way round as far as I know. Unless of course you had one you didn't know about, that turns up later. I have thyroid disease but it was diagnosed when I was in my early 20s and, generally, under control.

Tumtimes1 Fri 30-Aug-13 13:28:41

Hello all! I have just been told that one of my ovaries is polycystic - does any one else on here have this? I don't think I have the syndrome, as no symptoms. This was noted on my scan a couple of weeks back, Any advice would be great. x

if its not syndrome then there's no worries. I was told the same at one scan but the next time I asked and was told there were none. so I think they come and go.

duggs1976 Fri 30-Aug-13 15:10:15

Yep same with me. Dr s gave me metformin but another doctor who scanned me said I didn't have the syndrome and without a blood test to confirm the diagnosis I shouldn't have been given the drug. Apparently many women can have polycistic appearing ovaries at various times but there usually isn't anything to worry about or be done. Keep an eye though as now I am sure hormonally multiple cysts on the ovary isn't a sign of great balance and I would now go and see a Chinese herbalist rather than necking some western drugs someone has chucked at me. If you are over weight or thin but hairy with acne these can be symptoms but tbh I've always been a bit overweight and more so these last 6 pregnancies so I think you are probably fine!

Tumtimes1 Fri 30-Aug-13 21:32:01

Thanks guys! That's really reassuring. I am over weight but like a stone over weight so nothing major and no other symptoms. I have a gynaecologist appointment Wednesday. Xxx

Buzzybee123 Sat 31-Aug-13 16:39:22

hey ladies I hope you are ok and enjoying the sunshine smile I just my umpteenth reassurance scan, i'm 18w5d all was ok, we are having a girl smile only 2 more week until my next scan

brownstag Sat 31-Aug-13 16:40:29

Lovely Buzzy. smile

Buzzybee123 Sat 31-Aug-13 16:44:30

thanks I'm still freaked out by the whole process and I'm still too scared to buy anything or to read any books on what is coming up hmm I am too aware that it can all go wrong

TheAccidentalExhibitionist Sat 31-Aug-13 18:04:20

A girl, how lovely Buzzy flowers congratulations.

I know this may sound like an impossibility but do try to enjoy being pregnant, I'm sure it would be easy to be overwhelmed with anxiety but I hope in your quiet moments you also find joy in it.

Sorry that sounded patronising, it wasn't meant to!

Buzzybee123 Sat 31-Aug-13 20:09:52

thanks accidental I am hoping over the next few weeks I'll start to feel something and that will help calm my nerves and I will start to enjoy this journey smile

thats amazing buzzy a gorgeous little girl!

Buzzybee123 Sat 31-Aug-13 20:58:59

thanks cartoon how are you

Bakingtins Sun 01-Sep-13 02:25:21

Congratulations buzzy you must be thrilled to bits! Do you mind me asking what treatment protocol you have been on? Have not yet managed to catch up with where on their journey everyone is.

teamdozie Sun 01-Sep-13 15:37:15

Thats great news Buzzy

Congratulations...

Im out again this month.. although AF hasnt arrived yet bot test said NO..

So bring on another month...

xx

Buzzybee123 Sun 01-Sep-13 18:49:21

team sorry to hear that

baking 2 and bit years ago I was an instadiffer, fell first month trying, had a few miscarriages was diagnosed with nk cells, then couldn't get pregnant, I had a fertility MOT where they told me my AMH was 1.1 and wouldn't get pregnant without IVF hmm so we only had limited funds and knew we would only get one shot at it so choose Donor egg, and we went off to a place called Brno in the Czech Rep

Bakingtins Sun 01-Sep-13 23:12:13

Thanks Buzzy - even better news that your little girl is doing well then!
Were/are you just being treated with pred?

Tumtimes1 Mon 02-Sep-13 11:26:06

Whoop! Great news Buzzy
xx

hi all I've been for my 20wk scan this afternoon, everything looks good. so thats the first half done!grin

Buzzybee123 Mon 02-Sep-13 17:18:53

baking the clinic didn't do immunes but would support you on your programme, I did try to go and see Shehata but I left it too late to see him before I went, I'm on the hydroxy and I took 25mgs of Pred from 'ovulation/egg collection'

duggs1976 Tue 03-Sep-13 08:27:24

Free you have done amazingly well on the "first heartbeat" miscarriage documentary fund raising efforts... If anyone hasn't had a peek or maybe even supported this please do take a look now... Link to follow.

duggs1976 Tue 03-Sep-13 08:29:58

http://www.kickstarter.com/projects/434068999/first-heartbeat-a-film-about-miscarriage

freelancegirl Tue 03-Sep-13 08:41:05

Thanks Duggs! I'm so busy with it all I've no time to write. Great news for Buzzy though.
How are you Duggs?

I know a few more of you are up for being interviewed, will give you a shout when we've got funding and arrange xx

freelancegirl Tue 03-Sep-13 08:41:43

Oh and great news too Cartoon!

duggs1976 Tue 03-Sep-13 08:45:58

No probs free you are doing a sterling job!grin I'm ok. Feeling remarkably fine but I think the weekly acupuncture and Chinese herbs help but I would rather like a few reassuring signs. I'm 8 and half weeks now so ticking along. Might have a 9 wk scan privately. Went to doctors yesterday to book in. Very scary and don't really believe it will work out yet. Great news on the other scans ladies. X

freelancegirl Tue 03-Sep-13 09:02:57

Keeping everything crossed for you Duggs. 9 weeks will be a great milestone.

Bakingtins Tue 03-Sep-13 09:34:57

I've backed the film and will share the link on the miscarriage board, it deserves to be aired widely.
trickster great news, you must be so relieved!
duggs crossing fingers for you. You were so helpful when I was looking into all this, really hope this works out for you.

freelancegirl Tue 03-Sep-13 10:00:29

Thanks everyone - the support is overwhelming. We are 97% funded as from this morning. Please email me with your nicknames so I know who you are! xx

Arianrhod Tue 03-Sep-13 12:16:53

Also backed the film .. it's so close to the target, hopefully the last amount will come in very soon now. This is SO a film that needs to be made, and seen!

Bakingtins Tue 03-Sep-13 21:45:21

Hi all - good phone appt with the ever positive Prof Q. My uterine NK cells are 16% (normal <5%) and she seems to think that is in the range where she can be confident about helping me. She said if they were >20% then she'd be less hopeful that the medication would work.
Protocol is progesterone from day 21 of cycle, test on day 28, if positive continue the progesterone and start prednisolone. Early scan to check pregnancy is in the uterus then start clexane (heparin injections) as they are cytoprotective for the placenta (nothing to do with clotting disorders which I don't have). All those treatments for the first 12 weeks, then if successful monitoring for faltering growth at 28 and 34 weeks.
We're prepared to give it another shot so I guess we are officially TTC again from this cycle.

duggs1976 Wed 04-Sep-13 06:50:29

Good news baking - am I right in thinking prof Q prescribes 10mg pred from positive pregnancy test?

Bakingtins Wed 04-Sep-13 07:25:24

20mg. How does that compare to doses others are taking?

duggs1976 Wed 04-Sep-13 07:27:31

20mg is pretty standard dr s prescribes 25mg but he doesn't use clexane as much as others and dr ndwuke is 10mg I think? Sounds like you have best bet because taking pred month after month when you don't get pregnant has disastrous effects on some (mehmm) and I totally regret it, so yes prof q and others sounds like a better plan to me. Best of luck x

freelancegirl Wed 04-Sep-13 09:34:45

25mg for me too and up to 40mg upon BFP as 'very high' protocol.

Quickie - I've been asked to write this (recurrent miscarriage) up for a broadsheet. Anything you would particularly like to see in the feature?

Bakingtins Wed 04-Sep-13 12:29:17

freelance How frustrating and upsetting it is to be told by the medical profession that you are just unlucky. My experience was that MC 1 was "unlucky" 2 is "very unlucky" 3 is "extremely unlucky" and then 4 is "we don't know what is wrong and we can't help you".
It's an area where there is still so much that is not understood and more research is needed.

ChoccyPud Wed 04-Sep-13 12:41:30

And the appalling treatment meted out by unsympathetic /untrained NHS staff in eg giving out the news you've had a mmc in at best a clinical manner, leaving you in corridors to wait to see a doctor with people walking past staring while you're sobbing your heart out. I could go on but I'm sure you're aware of some suitable examples. Basically staff shouldn't be allowed to work in an EPU without training on the emotional impact of mc on the woman and her oh. Time may be short but it doesn't take long to engage brain and behave in a vaguely human way.

<climbs down off soapbox>

Also, the fact that one of the worst things about mc and rmc is no one talks about it. How many of us only appreciated how common it is and that we all go through the same perfectly normal experiences and feelings until we found this thread/community? When I first found it two years ago it was like reading my own thoughts.

duggs1976 Wed 04-Sep-13 13:22:13

Agree with choccy totally! I have to say the fact that the specialists in this country especially seem to fragmented and focused on their own area - immunology, (dr s), blood clotting (st Mary's) and don't seem to have a joined up view means that you have to take a gamble on which area might be your issue. Or a number. There are some consultants that seem to be taking a holistic view but these tend to be few and far between. Male issues are under investigated in any detail ( not good enough just having basic sperm NHS test when there are DNA fragmentation tests available now). Hope that helps. gringringrin

duggs1976 Wed 04-Sep-13 13:24:53

One analogy I have heard is that of the seed and soil and however much you fix the soil a bad seed will not grow and vice versa. Hormonal balancing is essential and I think taking some time to get that right before rushing into ART is important. Sometimes western medicine can't fix the hormone imbalanced required but they are usually quite simple fixes with herbs, diet and lifestyle changes.

freelancegirl Wed 04-Sep-13 14:10:42

Duggs can you PM me your email address please? And anyone else who would be up for being quoted smile

BellyD Wed 04-Sep-13 14:25:28

Free congrats on getting all your funding. Great news. As for your article I would say that if you suffer from rmc you end up being in a permanent state of limbo, and so your life gets put on hold. You are either ttc, dreading your first scan whilst hoping that this time might just be different, going through a mc, or waiting for your body to recover before you start again. All the while you try to suppress your hopes and dreams for the future because you know you may have to face the devastation of them being taken from you yet again.Yet you are faced with continual reminders of what you have lost as people give birth when you should have and social media makes this even harder to avoid as these children grow and develop. The questions are hard - suffering in silence when someone asks have you got children and you just say no, not yet, rather than reply "but I've has 6 miscarriages" because you are too British and don't want to create an awkward scene. Having been told at my 6th mc scan by Mr S not to have ivf as it was so expensive, and that by trying naturally the worst that could happen would be another mc! I can safely say that the having now had a failed ivf cycle, the disappointment of failure is bad but nowhere near as distressing as a mc. However on a positive note, I have met some amazing people both in rl and virtually through all of this and I'm sure others will agree threads like these are a total lifeline obsession DH and I have had our relationship tested to the full and are still going strong. It is important not to underestimate the suffering ohs go through too. Also whilst there is still hope that you may one day get there, then you keep doing EVERYTHING you can. To look back in ten years time and to know you hadn't done all that you could would be hard to live with.

I am sure you know/have felt all of this so rant over!! What you are doing is incredible and so important.

duggs1976 Wed 04-Sep-13 15:21:03

Fantastically put bellyD ...x

ChoccyPud Wed 04-Sep-13 16:16:59

Yep. What belly said smile

Buzzybee123 Wed 04-Sep-13 18:53:28

agree with the other comments , the emotional impact miscarriage has is not recognised, I think bereavement training is very important not just by the professionals who work in this area, (still haunted by the rude Cypriot doctor at my RMC), but also in the work place, I couldn't believe some of the comments people made, they meant well but just ended up saying such hurtful things that upset me more.

there is limited support for alot of people, my place have worked has just joined onto a hospital that does take care of its staff, but for others they don't really know where to turn or what options there are out there, what treatments there are.

sameoldIggi Wed 04-Sep-13 23:15:30

Belly you have put that so well.
Unfortunately there are no answers as to why some of our babies are lost; but there are answers in many cases. If I lived in London I could have been referred to Mr S on the NHS - whereas my local hospital does not believe in this treatment. If I had followed their advice I would not have my baby. When articles talk about the groundbreaking treatments for mc that we all know about, it can be forgotten that so many women have to fight for access to these treatments - and before they can fight, they have to educate themselves as no-one offers us this information. And all while going through the physical and mental effects of our bereavement, and the isolation caused by largely unacknowledged grief.
I've said it many times, but I do believe I owe my son to mumsnet thanks

Tumtimes1 Thu 05-Sep-13 10:44:17

Hello all,

Randomly I had a very distressing NHS hospital appointment yesterday (I have now been referred NHS stylie as I am on my 3rd MC). I was at my local hospital in a packed boiling hot sauna of a waiting room. With women with new born babies, all laughing and joking with each other. The delay for my appointment was 2 hours. It was agony and I couldn't do any complaining as I knew I would just end up crying. Absolutely awful.

When I finally saw the NHS consultant they realised I'd had all the blood tests that they carry out, and have prescribed me asprin and progesterone (x2 400mg) pesseries daily from BFP.

Mr Shehata also gave me progesterone (1x 400mg daily) from BFP, 25mg of prednisolone for my borderline/high NK cells from ovulation, asprin to be taken from immediately for my migraines, vit D, high folic acid and omega fish oil.

I am in a quandry as to how best to proceed. I keep seeing people on line saying to start pred from BFP and start progesterone EARLIER, specifically Day 21.

This month I am on day 2 (2dpo) of prednisolone and plan to start the progestyerone from day 21 just 400 Mg daily and then move to 800mg daily if I get a BFP.

Does anyone have any advice on this? Thanks so much!

brownstag Thu 05-Sep-13 11:26:16

Tumtimes, I've been using progesterone from ovulation, well 3 days after, when I get a temperature shift that confirms ovulation. But I've doing that off my own back and without anyone's advice. (I have been wondering if it's good for me!) I did get pregnant on this regime (with 10mg from ovulation and 25mg at BFP) a few cycles back. But miscarried at 8.5 weeks due to trisomy.

Tumtimes1 Thu 05-Sep-13 11:44:56

Ah ok thats interesting brownstag! thanks!
do you know any reason why someone would start progesterone at day 21 in particular? Or does anyone else know why that might be?

xx

sameoldIggi Thu 05-Sep-13 12:10:19

I don't know an answer to that, not up on the latest advice though. Mr S told me (some time ago) to take the progesterone from bfp only, so that is what I did.

Buzzybee123 Thu 05-Sep-13 12:56:50

tums I was told to take progesterone from just after ovulation when I did ivf I didn't get on with the pred so after seeing shehata he told me to take progesterone from ovulation and pred from BFP

Bakingtins Thu 05-Sep-13 15:23:09

I've been told by Prof Quenby to take 400mg progesterone twice daily from day 21-28 then continue if BFP day 28 until 12 weeks and stop if BFN. It's supposed to help prepare the uterus lining for implantation. She said do that for 3 cycles and if I'm not pregnant by then try without as it seems to stop some people becoming pregnant. I was told to take progesterone from BFP by my NHS consultant last time, Prof Q says that is too late.
20mg of pred once a day from BFP.
Clexane injections once a scan confirms an intrauterine pregnancy, for cytoprotective effect on placental cells.
She specifically advises against taking aspirin as it may interfere with preparation of the womb lining for pregnancy (NHS also prescribed aspirin last time)

It really doesn't help that they all disagree with each other but I guess it reflects that this is all new stuff and the research is continuing into what actually works best.

Tumtimes1 Thu 05-Sep-13 16:11:15

oooh this is really really interesting thanks both! Buzzy weren't your NK Cells borderline too? I am really considering on next cycle doing pred from BFP and progesterone from Ovulation.
I think thats healthier too!

This cycle I will do pred from ovulation and progesterone from day 21 I think. hmmmm its funny feeling like I am kind of self diagnosing almost as to when the best time is.

Can anyone recommend the ahem best er passage to use for the pesseries? V or A? Thanks x

ChoccyPud Thu 05-Sep-13 16:12:00

Well... I guess I'd best start getting my head round the idea that I may actually end up with a baby here: all fine at 12 week scan at FMC. Chromosomal tests all fine. Omg I'm officially pregnant!! grin

Bakingtins Thu 05-Sep-13 16:24:45

Choccy that's brilliant news - congratulations!

Tum always used V, didn't fancy A much and blurb says can cause constipation if used rectally. V not too bad but you need liners because they sort of melt and disintegrate blush

Buzzybee123 Thu 05-Sep-13 16:32:29

choccy great news smile You can start to believe

tums with this cycle being IVF I took pred and progesterone from EC, but my nk cells were low. I use the back door, no mess no constipation but I think it depends on the individual

sameoldIggi Thu 05-Sep-13 16:49:43

Choccy! So, so pleased grin grin

Tumtimes1 Thu 05-Sep-13 17:55:40

Thanks guys! X
Oh my god I got actual butterflies on your good news choccy! This must be an amazing feeling, congratulations! Really happy for you! Xxx

freelancegirl Thu 05-Sep-13 18:08:20

I got shivers too! That's amazing Choccy. So pleased for you xx

BellyD Thu 05-Sep-13 18:17:09

Great news Choccy. So happy for you x

duggs1976 Thu 05-Sep-13 18:39:28

Fabulous news choccygrin can I ask what dates you had early scans with this pregnancy?

ChoccyPud Thu 05-Sep-13 19:35:56

Thanks all! Not sure it's quite sunk in yet.

I've had scans at 6.5, 8.4, 10.1 (plus Harmony blood test), and today 12.3 (but measuring 13.2!!!)

Tumtimes1 Thu 05-Sep-13 21:05:45

Excellent!! Yay lovely!

duggs1976 Thu 05-Sep-13 22:23:32

Is this harmony test the new one that measures the DNA in mothers blood?

brownstag Fri 06-Sep-13 06:55:21

Bakingtins, that's interesting about the aspirin, as I used it religiously for 2 years and didn't conceive once, and then this year I've conceived twice without it (age 42). Nothing to show for it, of course, but progress at least!
Wonderful news Choccy!

ChoccyPud Fri 06-Sep-13 07:25:59

That's it Duggs. I'd definitely recommend it as an adjunct to the usual Nuchal test and scan. My odds overall are now 1:10,000 taking account of my low risk Harmony results, compared to Downs odds on my age alone (before scan analyses nasal bone, NT etc) which are 1:123. Well worth £180 for two visits to FMC, first for viability scan and bloods, then for 12 week scan, nuchal and harmony results.

Have you decided when to go for a scan yet? How are you feeling?

duggs1976 Fri 06-Sep-13 07:43:22

So just so I'm clear you paid £180 and got :

Viability scan at 10 weeks and blood taken (presumably only if scan good news?) then you went back for 12 weeks scan and the harmony results are waiting for you so assessment can be made together? Is that right? Sounds like an amazing deal?

If so then I think I will follow suite.
I'm terrified though as I haven't had as good news as you had on these early scans. I got in a bit of a panic really and had first scan too early 5wk5 days from LMP and they only saw gets and yolk sac and said I could be 5wks 1 day to 5wks 5 days because of variance on scan machine. Then had nhs st Mary's scan day after which said I was 6wks exactly and sac and yolk sac still no fetal pole. That was not a nice experience at dr Horner basically said come back next week and if no pole or hb then will not be a viable pregnancy which I knew but he was all doom and gloom.

Hence my scan aversion mode. Which lasted until following Friday when I woke up one morning in a blind panic and drove to some private clinic who scanned me and said I was either 6 wks 1 day or 6wks 5 days depending on variance but there was a fetal pole and hb. They didn't or couldn't measure it though...perhaps too early. Not sure what I was thinking at the time just glad to see something.

That has been it.
That was 2 weeks ago today.
No bleeding or cramping but nothing much of anything apart from tiredness and maybe some on off slight nausea but I am not sure I make that up from worry?
So here I am either 9 wks 1 day based on LMP or 8wks 5 days based on previous scans (none of which correlated but then typical inconsistent me went to 3 different places).

Might go for a scan on Monday - but now choccy has written that perhaps I can go for your package?
Anyway. Shut up Duggs and go do something useful.

sameoldIggi Fri 06-Sep-13 09:59:35

Duggs you must be living on a knife's edge just now. But seeing a heartbeat is always a great sign. Hope the next few weeks speed by for you. Remember the mantra - pregnant till proved otherwise!

ChoccyPud Fri 06-Sep-13 10:07:22

That's correct. Why don't you book an appt for when you will be 10 weeks on dates? No sign of trouble is good news!! Tiredness is also good news. I know exactly how you feel and I have never been so terrified as I was going into the 8.4 scan. But it's best to go have a look before 12 weeks for positive and negative reasons. Got to bite the bullet sometime... X

Abney Fri 06-Sep-13 10:30:19

Hi Choccy excellent news. So pleased for you. Was you on pred, etc or was this a DIY baby? * Duggs* I am keeping everything crossed for you. Hello to everyone else.

Clabbage Fri 06-Sep-13 10:55:20

Am so bloomin pleased for you choccy.
duggs I did the same as choccy and went to FMU for Harmony package. You had to be between 10 and 11 weeks to 'qualify' The quality of the scanning alone made it worth it!
The scan thing is such a nightmare. I physically shake going into scans. Heart pounds out of chest. Strangely, news either way stops the feeling instantly. It's the waiting to know that crucifies me. Reassurance scan=paradox! But...what on earth is the alternative? I wish you so many positive vibes as you work out what to do xx

Arianrhod Fri 06-Sep-13 10:56:18

choccy Fantastic news, so very pleased for you!! And duggs, another one here crossing fingers for you smile

Clabbage Fri 06-Sep-13 11:00:20

free congrats on funding. I'm thrilled to have been able to contribute.
I would like some sort of comment on women like us being easy prey for money makers as we are pretty desparate lot (for that, read strong, tenacious, driven but vulnerable breed). I know that is a slightly contraversial thing to say but there are people out there making vast sums from our trauma.

Clabbage Fri 06-Sep-13 11:10:08

Apologies, I do lose track of who is where!
baking you sound like you are in good hands. Everything I have read about Prof Q impresses me. I wish I had gone to her. Lots of luck.
buzzy lovely news about your scan. A precious girl.
cartoon so pleased to hear that your scan went well. I had mine on Wednesday. Had a lovely sonographer who explained everything in great detail. All seemed fine. She even took a lot of time to get a good photo.
I also saw the consultant who wants to scan me at 28 weeks and 35 weeks. If I had to write a protocol for good practice in preg after RMC, I would use the care I have had in this pregnancy as my benchmark. I have a long way to go but so far, so good.
/waves to everyone else x

Tumtimes1 Mon 09-Sep-13 08:28:07

That's wicked Clabbage all of these lovely positive stories are making me feel so good! I am getting really excited about when I become pregnant again (with some dread of course).

I have an appointment at Dr Shehata's this afternoon to stuck up on more prednisolone. Louise has said he may prescribe metformin for my polyscystic ovary but we shall see!

duggs1976 Mon 09-Sep-13 12:04:08

Bad news for me am afraid. No hb at today's scan hmmdevastated again

sameoldIggi Mon 09-Sep-13 12:23:54

Duggs I am so so sorry, ans so angry on your behalf as well. You shouldn't have to go through this.
XX

freelancegirl Mon 09-Sep-13 12:55:47

Duggs, I don't know what to say. So, so sorry to hear that xx

duggs1976 Mon 09-Sep-13 13:00:53

On my article free pls can you change the last paragraph that says I'm 9 wks pregnant and hopeful to "just had my 6th miscarriage and f&&ked off " maybe re word the last 2 words wink

Arianrhod Mon 09-Sep-13 13:18:43

duggs Said it on the other thread but I'm so damn sorry, this just shouldn't have to happen! Big hugs ..

Tumtimes1 Mon 09-Sep-13 13:36:06

Duggs I am soo sorry to read this awful news! Its not FAIR!!!! Mate I'm thinking of you xxxx

sameoldIggi Mon 09-Sep-13 15:45:39

6 sad sad

Clabbage Mon 09-Sep-13 20:13:39

I'm so so sorry duggs. There is no justice. Look after yourself x

duggs1976 Tue 10-Sep-13 06:25:03

Just posted on the other thread that. I think I'm going to get my nk cells re tested again.
Can I also ask you ladies to write your treatment programme down of your most successful pregnancy.
See if we can get a helpful list going
Hopefully?
smile Many thanks

TheAccidentalExhibitionist Tue 10-Sep-13 07:06:33

duggs I'm so sorry to hear your news, it's just shit for you.

I've become quite ill in the last few weeks with SLE (Lupus) it's a serious auto immune disease causing me multiple joint pain and chronic fatigue but can also affect all the major organs.
I have always been a bouncy energetic person but I'm now so breathless in the mornings I can't even drive my son to school. I have to carefully plan out my day so I don't over tire myself. I can't walk my dogs or do most things that I enjoy. Driving for 10 minutes leaves me needing to lie down for an hour.

So I find myself in the situation where they can't stabilise my Lupus or regulate my immune system because I'm ttc, the drugs are contraindicated in pregnancy (except Hydroxy which I can't take as it affects my eyesight) so I probably won't be able to work or feel better until after I have a child and I can't get pregnant as the pain drugs I have been given stop me from ovulating.
Lupus can be dangerous in pregnancy and has definitely caused my 5 previous MC. My risk of MC, premature birth and parent and child death is higher.
I'm possibly facing a life of chronic pain and fatigue, I've been asking myself can I even cope with another child when I already have a 10 yr old DS with ASD and hyperactivity.

DH and I had the chat last night..do I stay sick, come off the pain meds and TTC or forget about another child and get stabilised and focus on doing what I can for my DS.
I'm waiting to hear from Dr S about whether I can take the super ovulation drugs he has given me whilst my lupus is so unstable.
It feels like our issues are insurmountable now. It makes sense that we give up. We have decided to give ourselves a month to decide what to do.
We are so sad about it all sad

brownstag Tue 10-Sep-13 07:33:25

Accidental, Really sorry to hear what you're going through.
I expect you know all about this already, but during my researches on DHEA, I read about its being used as a treatment for Lupus. And as that is also good for trying to conceive, maybe that's something to consider. Looking at the literature, it seems important to get it prescribed in lupus, so that you can guarantee its purity and strength.
www.hopkinslupus.org/lupus-treatment/lupus-medications/dhea/

Bakingtins Tue 10-Sep-13 08:05:35

duggs I am so sorry sad it is very unfair.

accidental I'm sorry you are feeling so poorly. It sounds like you have a very tough decision to make. I wish you and your DH wisdom as you decide what to do for the best.

TheAccidentalExhibitionist Tue 10-Sep-13 08:08:55

Thanks Brownstag I'll talk to my rheumatologist about it. I seems from the article you've linked that DHEA should not be used when TTC or pregnant?
Even if it could help, I don't hold out much hope. Medicine works quickly and efficiently in France but they are probably 10 years behind. They don't like new medicines and lots of specialists are not knowledgable in recent medical developments. They seem to think if it wasn't researched or developed in France it either doesn't exist or it's not to be trusted!

brownstag Tue 10-Sep-13 09:46:54

Certainly not while pregnant, but while ttc yes, if you have low AMH/are an older lady. It helped me conceive twice this year after over 2 years of nothing. But I did suffer awful acne on it; I'm now trying to find the optimum dose that improves fertility without the androgenic side effects. It has other good side effects for me; reduction in anxiety, better sleep, better mood, more fertile mucous, increased oestrogen levels.
I think you can buy it from the Center of Human Reproduction website. That would guarantee the quality. They are the ones (in Canada) who've been pioneering the use of DHEA for fertility.

suemays Tue 10-Sep-13 09:49:01

duggs as said on the other thread, keep positive as I am sure you will get there. My list of daily drugs etc once pregnant are:
40mg pres plus omazeprole
200mg Hydroxychloroquine
Low dose aspirin x 2 tablets
800mg Cyclogest

Vitamins:
25ug Vit d
Pregnacare plus
200ug Selenium
3300mg High grade fish oil

Intrallipids at bfp, 8, 12 and 16 weeks.
With ndukwe I have had intrallipids before pregnancy around ovulation which are then repeated every 3 months if not pregnant.

With this pregnancy it is changing slightly as advised by mr ndukwe. I am still taking the higher dose of 40mg pred (ndukwe said to take 20mg). I have to stop the aspirin as it can effect womb lining once pregnant and use 40mg clexane instead. Plus I have been told to take 500mg calcium twice a day. Mr s also now says to double up on vitd3 so I am doing that too.

I am also taking 1000mg vit c and 400iu of vit e as zita west says it can help prevent miscarriage.

Other things I do are resting as much as possible, no exercise or lifting and drinking 2-3 litres of water a day. No caffeine, no sex, no alcohol, no hot baths.

Hope that helps!

For anyone that doesn't read the other thread, I got a bfp yesterday but trying to pretend I am not pregnant at the moment as it scares me so much.

accidental I think I would get your health sorted out first before TTC. I doubt your body will let you conceive if it is out of balance anyway. Sorry to hear you are having an awful time.

suemays Tue 10-Sep-13 09:54:07

I was also taking DHEA and coq10 before this pregnancy. Have stopped them both now though. It's hard to know if they helped me conceive but I noticed extra fertile mucous too plus my sex drive went through the roof. Make sure you get the micronised dhea though. I got mine from America. The coq10 was from Costco, cheapest place I could find it!

Arianrhod Tue 10-Sep-13 10:17:47

duggs Just a thought, but Serum follow Dr Braverman's protocol and use neupogen quite a bit now for recurrent miscarriage issues; it's part of my protocol. I wonder if this wouldn't be the/an answer for you too? Just a thought - I think it's covered in one of the links I sent you.

accidental - I know it's not a perfect answer, but have you considered surrogacy? I'm just thinking that that way you could take the meds you need to get your lupus under control AND still get a baby with your own eggs & hubby's wrigglies.

brownstag Tue 10-Sep-13 10:47:39

Yes, surrogacy would be an excellent solution. If only there were surrogates on tap for all of us! I suppose it depends on how important you consider actually being pregnant yourself, or just producing your own child. I could easily dispense with the whole pregnancy thing if that were an option for us financially. No postnatal mental issues for one, and an inability to obsess over every pregnancy symptom another. And in your case, accidental you could stabilise your own health and not have to worry about jeopardising it.

freelancegirl Tue 10-Sep-13 11:07:07

Accidental that sounds awful, I too would concentrate on my health for a while but it's easier for me to say that as I don't (yet!) know the agony of wanting a second child and miscarrying. For me it has been incredible so far to have one and to actually become a mum. So personally, my feeling right now is that for me I would stop TTC, get as healthy as possible and enjoy life. Surrogacy sounds interesting too, no idea how you find people though.

duggs. My list of daily drugs once pregnant were:
40mg pres plus omazeprole
200mg Hydroxychloroquine
Low dose aspirin 75mg
400mg Cyclogest

Vitamins:
25ug Vit d
Pregnacare plus omega 3
200ug Selenium (off my own back, Mr S said why not)
125mg thyroxine as per usual

Intrallipids at bfp, 8, 12 and 16 weeks.
25mg Pred from ovulation
Hydroxy a few weeks before got pregnant

Sue, cautions congratulations! A new level of mentalling to begin for you again. Will be keeping everything crossed for you.

Buzzybee123 Tue 10-Sep-13 19:15:18

duggs I put my protoxol on the other thread, I tried DHEA and didn't notice any difference with ewcm, just lots of acne, never fell pregnant on in. But it works for some and not for others

I believe Gorgy does the neupogen now

accidental big hugs I am sorry you are so unwell, take time to think about the future

I know a lady who is a surrogate, there are a few out there and there are agencies you can use but it is very expensive sadly £15,000 +

Clabbage Tue 10-Sep-13 20:00:05

duggs the pattern that you just followed with this mc is the same as my last 3mcs and also of number 4. On each occasion I had a scan at 6 weeks where feck all was seen (empty sac) scan at 7weeks showed hb but measuring behind with sac out measuring fetus, to no hb at 9 weeks. One of these I know was a trisomy and the others have been so similar that I feel they probably were too.
My treatment this time was all the normal Mr S stuff, plus clexane and I took high dose folic acid prior to conception (the only thing I did differently). I'd also been on a largely carb free diet.
accidental I'm sorry to hear of your difficulties. I guess common sense says put your health first but I have found that common sense has rarely prevailed in my life with regards to this particular journey! Xx

duggs1976 Wed 11-Sep-13 07:36:48

It kind of sounds chromosomal
Doesn't it? Your pattern and mine ? Do you mind me asking how old you are clabbage ? I'm 36 almost 37 but started all this at 33!

freelancegirl Wed 11-Sep-13 08:40:51

Just a quick news flash from me. I've been speaking to professor quenby about an interview and she had some info on embargo until today. Their studies have shown that steroid treatment can be confirmed as effective on preventing recurrent miscarriage. I quote:

Led by Professor Jan Brosens of Warwick Medical School, the team found that elevated uterine NK cells in the lining of the womb indicate deficient production of steroids. Deficient steroid production in turn leads to reduced formation of fats and vitamins that are essential for pregnancy nutrition.

This study, published in The Journal of Clinical Endocrinology & Metabolism, is the first of its kind to provide an explanation for why high levels of NK cells can cause miscarriage

.Siobhan Quenby, Professor of Obstetrics at Warwick Medical School, explained, “This work is really exciting because after years of controversy and doubt we have a crucial breakthrough. This means, quite simply, that we have excellent scientific justification for steroid based treatment to prevent miscarriage.”

duggs1976 Wed 11-Sep-13 09:27:14

Ok so that is quite a different angle then from anything we've heard before?

Bakingtins Wed 11-Sep-13 10:08:40

Hurrah for Prof Q smile

freelancegirl Wed 11-Sep-13 10:08:57

Well only that there were a lot of people who didn't necessarily believe in the nkc theory and suspected succesful pregnancies through treating with steroids were probably down to a placebo effect. So nkc treatment and steroids have been legitimised. So nothing new to us, but new to some medical practitioners!

brownstag Wed 11-Sep-13 10:19:58

Very interesting, Freelance. I'm wondering whether that might also explain why my DS was small, at 6lb, when all other babies on both sides of the family are usually whoppers.
It also raises other questions, though, such as why hydroxy has an effect, if it does, as that doesn't work directly through a steroidal action as far as I know.

TheAccidentalExhibitionist Wed 11-Sep-13 11:56:29

Thanks everyone. There seems little doubt in mine or my husbands mind that we need to stop ttc. Now confirmed by Dr S and my rheumatologist too. It's a long term decision as it can take years to stabilise Lupus. I'm already 40 so our chances seem to slip further and further away.

It feels extra sad because I have no family apart from my DH and DS, a big reason to keep trying for another baby was to have family for my DS when he is older. I can't bear the thought of him being on his own. He's so vulnerable with his autism. He's one of life's innocents.

Thanks for the suggestion of a surrogate. I would have no problem with that, I'll discuss it with my husband. He wasn't supportive of egg donation so I suspect surrogacy will be a step too far for him. Buzzy I'll PM you for your contact if we get that far.

I wish you all the very very best of luck with TTC, having sticky pregnancies and happy, healthy babies. X

brownstag Wed 11-Sep-13 12:35:12

Good luck Accidental. I and several others on here totally understand that overwhelming need to bring a sibling into the world for our single children, and the decision to stop ttc for now must be a very sad one. We adopted a cat this week and our DS has started calling her his 'sister'. Funny, but tragic really.
I don't know what the laws are surrounding surrogacy in France, but I found this site very helpful when I looked into it, and there are some lovely success stories on there. Your husband might move the goal posts in his mind once he realises ttc isn't a sensible option now.
www.surrogacyuk.org/

Clabbage Wed 11-Sep-13 19:58:00

duggs I'm 41, started miscarrying aged 35. Eight in total: One chemical, seven between 7 and 12 weeks.
So I've gone mc, baby, mc, baby, then 6 mcs and now 21 weeks. Why I ever tried for another one after my second son, I can't explain but I guess at that point I didn't see myself as a recurrent miscarrier and once I'd started, I didn't know how to stop. Success has always felt like the only cure for all the loss but who knows? Hopefully, I can let you know in 19 weeks!
accidental I'm so sorry that things are so shit. I hope you are soon well and you can find some peace x

sameoldIggi Wed 11-Sep-13 21:17:53

Accidental I am sorry to hear your news. I can only hope that stabilising the lupus takes a shorter time than you fear. Of course your ds will need a healthy mum more than he needs a sibling, just really unfair you cannot at the moment have both.
Free, I'm really excited to hear the news re Prof Q. Maybe other women won't find it so hard to get anyone to prescribe them steroids in the future.
Duggs, regarding successful protocol - I had steroids from ov, aspirin all the time, progesterone from bfp, and a vitamin regime including high strength folic acid, D3, magnesium, veggie omega 3, selenium, co-enzyme q10 and a multivitamin.

duggs1976 Thu 12-Sep-13 06:47:21

Thanks iggi. Is strange - Louise said I should get the NK cells results by end of week so hoping today or tomorrow. I really want to know what went wrong with this 6th pregnancy. I'm hoping for high levels so I can try hydroxy properly as that seems to be the only key thing missing. If not then all pressure is on the chromosomal testing of the fetus and was only 7mm so not sure what they can get from that. It might be inconclusive. If both come back ok then we are really F@@£ed as no idea what to do next ? Egg donor, sperm donor, surrogacy or adoption. Fekk.

Bakingtins Thu 12-Sep-13 07:32:20

duggs my foetus was only 5mm and they got (normal) chromosomes from that. Knowing that was the trigger to stop half-believing the "unlucky" crap and get the NK tests done. Hope the results are back soon.

duggs1976 Thu 12-Sep-13 07:52:22

Hi bakintins thanks for letting me know. Did it take about 6 weeks for results to come back? Have you had any mc on the nk cells treatment ?

mollieboo Thu 12-Sep-13 09:30:35

Hi everyone

Duggs so sorry to hear your news, just awful. Hope you get somewhere with test results etc.

Accidental really sorry to hear your news too that you're unable to try again naturally, must be devastating to hear that news.

I'm also at the point where I don't know whether to try again. Have had 7 early mcs, lost Oscar at 5 months old and lost Joey a month ago at 5 months pregnant. My head is saying don't ttc again, and my heart is saying go on, you have one more try in you. My dh would stop now and try for surrogacy, we've been looking into it. Extremely expensive, but at the moment it seems more of a definite way of getting a baby here (if we can borrow the money!). You all know the desperate desire to have a take home baby, and mine is stronger than ever after so much heartbreak, but I'm obviously terrified too...

I really don't think I would have got to 20 weeks without Mr Shehata's treatment plan:

40mg pred, hydroxy, progesterone, Clexane, vit D3, pregnancy vitamins with fish oil (I use Lamberts StrongStart on the advice of a reflexologist), intralipids every 4 weeks until 32 weeks (if I got that far)

Does anyone have stupid questions thrown at them in the midst of their anguish or am I just becoming a bitter old cow? I'm fed up of people saying things like "do you think you can't carry boys?", "I know someone who had high nk cells which only attacked boy pregnancies, I'll look into it for you", "have you thought about ivf?", "have you thought about seeing a fertility specialist?", "have you thought about going through the epu as they put ladies on aspirin, pessaries etc?" (last three questions were from my counsellor at my first counselling session at the hospital yesterday, not sure I'm going back), "I'll speak to my friend, she's a midwife at the hospital in the fertility department" etc etc. It makes me dread going back to work so much, I work in a big open plan office with about 800 people there and I just know I'm going to have other unwanted suggestions and advice. I feel like saying "whatever you suggest, I will have already thought of it", or maybe just "f*ck off and leave me alone". I think I know the answer, yes I am a bitter old cow at the moment!! I think I'm doing dh's head in, he wants to come home to his wife who he married 3 years ago but he comes home to a grumpy, moaning woman who is constantly grieving...

Has anyone else been to counselling? Is it normal for them to throw random suggestions at you which wind you up? I thought it was for emotional support but I don't feel like I got it, I just came out more upset than when I went in!

Waves to all x

sameoldIggi Thu 12-Sep-13 09:59:59

Mollie sorry you didn't get support in your sessions. I have had counselling (lots of it!) though not with hospital, through Sands. It was great. I did talk about treatments etc, but when I wanted to, it was led by me.
I think people say the daft stuff because a) they do wish they could help b) they want some kind of answer for what happened and c) if there's an answer it might mean they are 'safe' from it ever happening to them.

brownstag Thu 12-Sep-13 10:02:05

Mollie, it sounds as if you need a new counsellor. I find they vary so much and I'm sure there's someone better. As to the insensitive comments, I think sometimes people just find the subject so overwhelming and uncomfortable that they just want to do something to make things right somehow, and to make the subject go away, so they desperately think of some advice. That will fix it! Instead of just listening. And then other people are just morons!
If you can afford it, surrogacy does seems the perfect solution. If it works, of course; no guarantees. Someone did offer to do it for me once, and that is the nicest thing anyone has ever said to me, but she's the last person who could as she suffers dreadfully in pregnancy and had pre-eclampsia last time. And even if you were lucky enough to find someone who would do it without wanting to be being paid, it would still be so expensive. But so much of the anxiety would be lifted. Although to be replaced with different anxieties, no doubt!

MrsChocken Thu 12-Sep-13 11:28:22

Ladies, my husband just sent this through, wanted to share: http://www.bbc.co.uk/news/health-24047842. Prof Brosens has been working on this with Prof Quenby.
Mollie, that is absolutely appalling - is this counselling through the hospital? If so they absolutely need to know about what has been said to you because it's unacceptable for their team to be so uninformed. Sending you so many positive thoughts - you are being so strong and amazing. xxx

sameoldIggi Thu 12-Sep-13 12:24:58

Thanks for the link - here's one for the abstract of their article (I'd have to subscribe to see full thing)
jcem.endojournals.org/content/early/2013/09/05/jc.2013-1977.abstract

brownstag Thu 12-Sep-13 13:04:05

Thanks for those links, ladies. Interesting though that they are testing uNK cells by biopsy, not by the blood test that is routinely used by Mr S and others. I've read elsewhere that circulating NK cells do not necessarily tally with uterine NK cell numbers and therefore maybe meaningless.

duggs1976 Thu 12-Sep-13 13:09:02

Yes. Dr g does both. Apparently 1 in 3 women have raised NK cells at some point is v common.

brownstag Thu 12-Sep-13 14:07:44

And did yours tally, Duggs?

duggs1976 Thu 12-Sep-13 14:45:39

No my nk cells test with dr Gorgy last may came back normal.
They were the extensive Chicago tests so much more in depth than the dr s tests. Dr s test was aug 2011
I had raised levels but not raised numbers. Then the following may after not getting pregnant I did iui at NLC which failed then IVF with CGH testing - full dr s immune support 40mg pred, intrallipids,
Clexane, cyclogest and 2 chromosonally normal embryos put back but mc at 5 wks. Dr S didn't have an explanation at the time but now I think was just a failed IVF cycle really. I went to dr g for re tests and those showed my NK levels at normal levels. So he didn't suggest uterine testing because he was concerntrating on hidden infections and the sperm of DH which were of concern. I'm really thinking this last pregnancy was chromosonal as the pregnancy was smaller than my dates all along. Hopefully I'll get confirmation. The treatment for uterine nk cells and blood nk cells isn't different so I don't suppose it really matters. I've started on hydroxy today so next pregnancy I will just chuck the steroids and intrallipids at it for good measure and hope there is a decent egg/ sperm somewhere between us. smile

Clabbage Thu 12-Sep-13 14:59:14

mollie I too have had lots of counselling. IME, the medical team can't share info with the counsellor and vice versa, unless you specifically ask for this. So, all her info will be based on what you choose to tell her. I am a bit stunned by her proffering treatment plans. Def not her remit imo.
I saw a maternity counsellor in my hospital who I can not speak of highly enough. If you don't get that vibe, please find a different one. I think it's important you set out what you want to achieve during counselling and for me both looking back on what has happened and looking at how to move forward with all the baggage. We have looked at perhaps why I make decisions I do, (some childhood stuff) and why I handle things the way I do. Explored life with another baby/without etc. I share this all as food for thought. You may choose to see a non maternity counsellor, as I don't think counselling necessarily needs to be narrowed to your 'maternal' experience.
I know you know this already but counselling is not a magic wand and can be really hard work. But if the formula is right, I think it can be fantastic.
Take care, my lovely. It must be such a tough time x

sameoldIggi Thu 12-Sep-13 15:49:55

Duggs it is only my experience but I have had pgs when measurements at scan were a bit behind, and neither baby made it sadly - only had tests with one but there was a trisomy found. With ds2 he always measured perfectly for dates. However I know there are women on mumsnet who have had low measurements and a perfectly fine pregnancy. I think we tend to be so sure of our dates though, maybe that makes a difference.

duggs1976 Thu 12-Sep-13 16:35:00

Yes I knew when I ovulated because of clear blue smiley face and had bfp at 10 dpo and I was measuring behind from the first scan. I think this might be a chromosonal thing as I was on pred, clexane, intrallipids, cyclogest. We will hopefully see but would help us to carry on if so. Thanks honey for sharing x

Bakingtins Thu 12-Sep-13 17:06:04

duggs I got the results in 4 weeks. I've only just had the NK cells diagnosis so no pregnancies on treatment as yet. I saw Prof Q and had the uterine biopsies, my NK cells were 16% and <5% is normal. I haven't had any blood tests for NK cells.

Buzzybee123 Thu 12-Sep-13 17:55:09

mollie it is astounding what people will say to you, although they mean well a simple 'I am so sorry' goes along way. You need to contact your Occ health dept and your manager, they should be talking to your colleagues and advising them to give you space when you return to work, that is what my occ health suggested, they also said to pop into work before going back so people could say sorry etc it also meant I could leave when I wanted and have a good cry which I did, it also meant that when I went back there would be less anxiety of the questions and comments, I wasn't too sure about this but it did help, also I noticed that where I work people were sympathetic but were also wrapped up their own worlds.

I agree you need a new counsellor, you have to feel comfortable talking to you, mine was through work and was great, she mainly listened and very rarely asked questions, she suggested different view points on how I was feeling, but in a positive way, she was never dismissive of my grief. I did in the end have life coaching which was totally amazing and changed my life around. It sounds sort of similar to clabbages experiences

mollieboo Thu 12-Sep-13 20:42:07

Thanks for the replies re the counselling, really helpful. Its really hard to find a counsellor, they keep leaving the health service and not being replaced so this is the only option. I might go one more time and set out what I want from the session as clabbage suggested and see what happens. Obviously there is the option of private counselling but funds are limited and needed for other things ie trying to have a family.

Thanks buzzy, I think I might go into work for an hour or so one day so that the return to work isn't filled with nerves and dread. Your counsellor sounded really good.

brown that is so lovely of your friend to offer to be a surrogate for you, even though it wasn't an option for you.

sameoldIggi Thu 12-Sep-13 21:22:47

Just to say Mollie that Sands only asked for donations, so not prohibitive price wise. In some areas I think the Miscarriage Association might do it too. I found asking for counselling via GP got me nowhere, sadly.

mollieboo Thu 12-Sep-13 22:05:51

Thanks Iggi, I didn't know sands did counselling & I can't see it on the website but will have another look. My gp was rubbish too. My work have a counsellor but he's a bloke, sexist I know but I don't feel like he understands my issues!

sameoldIggi Thu 12-Sep-13 22:16:48

Hoping now it isn't just my local area one that offers that.. Worth contacting them anyway.

mollieboo Thu 12-Sep-13 23:43:08

From looking on sands they say to contact your gp or cruse but you can contact your local group and a befriender can come to your home. I could ring them anyway and find out, cheers.

freelancegirl Fri 13-Sep-13 06:33:24

My DH is a counsellor Mollie and says yours sounded very unprofessional. Hope you find a good one xxxx

ChoccyPud Fri 13-Sep-13 07:32:44

Just took my last Pred. Freedom!!!!! smile

Mollie the counselling my GP referred me to after my dad died was less than useless. Can I suggest a totally different angle to think about - hypnotherapy.

Arianrhod Fri 13-Sep-13 08:42:55

As a fully trained, albeit lapsed, hypnotherapist myself I can second choccy on this - if you get a good practitioner (I know several, obviously!) they can really help. I'm disgusted at how you were treated mollie - I also started training as a counsellor and we were firmly taught that you are NOT there to 'give advice', no matter how well-meaning. Hugs to you and hope you find someone who treats you as you should be treated, with compassion and empathy.

mollieboo Fri 13-Sep-13 10:16:52

Well done choccy, last pred is big relief!!

Thanks for suggestion, hypno worked well for you did it? I wondered if CBT would be any good too...

Thanks free, must be great having a counsellor dh.

Xx

suemays Fri 13-Sep-13 10:28:37

accidental sorry to hear that your TTC is on hold at the moment. I still think its best for you to get to full strength first. I know you said lupus can take a while to be treated but you never know, it might get sorted sooner than you think and then you could think about TTC again. Maybe I am too much of an optimist but there must still be a chance you can try again in the future.

mollie I was offered counselling from the bereavement midwife at my local hospital but decided I wanted to work through things on my own. Have you not been offered that? They phoned me a few times to see how I was getting on. I found talking to other friends who had lost babies at a late stage was the best counselling for me as they had been through the same thing. It took me about 8 months to come to terms with what happened and stop blaming myself so try not to rush the grieving process. I still have bad days now though, especially as the year anniversary of her birth is coming up on the 25th. My DH said he keeps having flashbacks. I am happy to meet up if you need to chat to someone who has been through the same thing (not sure where you are based but I am in bucks).

* duggs* hope you are staying positive and resting up.

I did another test this morning and the test line was as dark as the control line on FRER so I am hoping this pregnancy won't end as a chemical. Part of me wishes that if it is going to fail it would happen early as I don't want to get to 20 weeks and it happen again then.

duggs1976 Fri 13-Sep-13 14:47:25

I'm no expert but I have had a bit of counselling. Jane knight was very good at zita west but not cheap at £150 a session I think (hence I had 3) summer 2012.

Just had my nk cell retest results back. I am now very high 1.93 - CD69. They were 1.79 2 years ago. I blame my healthy living and strong immune system. My count was 200.7 so that is higher as was 165 in 2011.
At least I have a reason now and I hope chromosome results come back normal.
I'm going to see dr S again to get a new plan but I guess it will be hydroxy and 40mg pred and intrallipids. I know many of you have had successes on the programme with v high counts so I'm
Hopeful. Makes 6 mc more explainable than bad chromosomes. Freelance I need to edit my TIMES article wink

Good news sue
Waves to others x

duggs1976 Fri 13-Sep-13 16:25:38

Another version of prof Q findings http://theconversation.com/natural-killer-cells-play-role-in-recurrent-miscarriage-18126

mollieboo Fri 13-Sep-13 16:26:14

sue whispered congrats, lovely news. Yes I defo know what you mean about wanting it to fail asap if its going to, but hopefully this is your time.

That's so kind of you offering to meet up esp as its hard for you at the moment. I'm in Wales so it's a bit far. I might even try a sands group. There is no bereavement midwife any more in my area. I'm completely battered and heartbroken from losing two sons and having 7 mcs, you have to get through as best you can I guess without cracking up.

duggs £150 a session, wow that's steep, glad she was good. I expect you're relieved to find some answers now are you? Glad you're keeping positive, it's good to know what's wrong so that a plan can be put it in place. Gives you lots of hope for the future.

Xx

duggs1976 Fri 13-Sep-13 16:31:15

I'm sure it can't have been that much looking back .... Surely now? I must have been in a bad way if so. Sue might know, but it was a lot. The difference was her specialisation in loss of pregnancy and child experience.

BellyD Fri 13-Sep-13 17:04:56

Sue glad to hear that your line has got darker. I hope this is your time, goodness knows you deserve some luck after losing Scarlet.

Mollie I have also been to see Jane Knight and she is as good as she is expensive, but as you say probably too far for you. Have you tried the charity Winston's wish? A friend of mine used them when she lost her son a few weeks after he was born and I know she found them to be brilliant. Also she had cbt which I think she also found to help her deal with her loss.

suemays Sun 15-Sep-13 08:44:24

Sorry I don't know how much Jane Knight is. I now my DH went to Cruse after he lost his brother and they also discussed all the babies we had lost. He found it very helpful plus it was a free service. I think they are across the uk.

suemays Sun 15-Sep-13 08:49:40

mollie my uncle lives in Carmarthen so if I ever go and visit I will try to arrange a meet up with you.
There is also the child bereavement charity who do telephone counselling so maybe that might be good for you?

mollieboo Mon 16-Sep-13 17:54:31

Hi Sue ok fab. Thanks re counselling advice too.

Waves to all x

freelancegirl Tue 17-Sep-13 09:34:18

THIS in the Times today!

Clabbage Tue 17-Sep-13 10:00:59

free
Bought the Times first thing following the kick starter email. Congratulations. I sobbed if I'm honest. So much of my unvoiced grief within it. Familiar experiences. Thank you for putting your head above the parapet x

Clabbage Tue 17-Sep-13 10:03:21

Not sure if I've said congrats to choccy for passing such mega milestones. Pred free!!!
And also to sue for being on that first step. Lovely news

Tumtimes1 Tue 17-Sep-13 10:06:11

Freelance - SUCH a good article. xxx

TheAccidentalExhibitionist Tue 17-Sep-13 10:13:19

free I can't read it, I don't suppose you could link to an alternative way of seeing it? flowers

brownstag Tue 17-Sep-13 10:42:35

Same here.

freelancegirl Tue 17-Sep-13 13:07:04

Thanks everyone. Yes the times has a pay wall and I don't subscribe either so haven't see the full thing yet myself. An going out to buy it in a bit so will see if I can scan and post.

I think I forgot to say wooooooooooo!! To Choccy too!

ChoccyPud Tue 17-Sep-13 14:19:07

Thanks guys!

I braved the pouring rain to go get the Times - somehow it's easier to risk getting soaked when I think how important for the baby it is to keep moving and get some level of exercise each day. Still can't think too far ahead though. Anyway. Great article free well done. Every little helps to get rmc into the popular conscience. Even if only to make more women aware that they aren't alone.

Tumtimes1 Tue 17-Sep-13 15:39:57

I think that's key here. The not being alone bit, I mean.

I remember reading Dr Beer's book and the chapter where he talks about the amount of times he has heard from some poor lady who has contacted him at 3am after trawling the net searching for answers, not being able to sleep, and craving any answers. To try to make sense of the cruel situation.

It reminded me of how alone I felt. In bed in the middle of the night, with just the glow of my iphone as I scanned articles, forums and anything else I could find in the hope that I might stop the noise, confusion and hurt in my head.

Everytime I read that section in Dr Beer's book, tears stream
down my face, because its so sad for them, for us and everyone who has been through this. Desperate, and I mean, DESPERATE, to find out why this has happened and so that we might find some peace again.

Thanks again Freelancegirl, for a brilliantly written article.

BellyD Tue 17-Sep-13 18:02:38

Great article Free, a voice for us all. It sent shivers down my spine as I read it in the supermarket car park (couldn't wait until I got home). As Clabbage said, thanks for being brave and speaking out about your journey. X

Yay, Choccy!

Mel3062 Wed 18-Sep-13 08:41:06

Great news choccy and well done free.
After getting a bfp sun on frer and af due today I've just got bfn on frer today. So looks like a chemical, how cruel I've never had one before. I've just had uterine biopsy not so long ago. HAs anyone had a chemical on hydroxy/ dhea / restravatol then gone on to have a more successful bfp??

Arianrhod Wed 18-Sep-13 10:29:02

I actually subscribed to the Times online just so I could read it, couldn't get to a shop in time to buy a paper! Great article free, so glad that a mainstream paper is prepared to run an article on this. free If you do read the online version you'll no doubt be amused to see that your name is Linda Rand, according to one commenter! grin

mel Chemicals are cruel indeed, but unfortunately a sad fact of our lives. It won't be anything to do with what you're taking, don't worry, just an odd chromosomal hiccough I expect. Big hugs to you.

freelancegirl Wed 18-Sep-13 10:58:53

Ahh Mel that's a shame. Chemicals are more common than we think and I guess if we weren't TTC we wouldn't necessarily know about them as wouldn't be testing. But it's certainly a way to get hope up and then have them dashed.

Thanks for all the comments on the article. Gosh Ari I forgot that people might have been commenting. Are there by nutters on there? There usually are!

Arianrhod Wed 18-Sep-13 11:16:22

Yes, I'm afraid there are free - your usual count of idiots and merchant bankers. Ignore them!

Tumtimes1 Wed 18-Sep-13 11:35:09

There are some total idiots on there but mostly I am pleased to say are "normals".

"Free" whats the latest with the documentary? Have you had any feedback from broadcasters? xx

freelancegirl Wed 18-Sep-13 11:37:35

They usually balance each other out - the nut cases and the normals. Is there anyone saying anything about why are we contributing to the over flowing population or thinking it's our right to have child? That's a usual one on these sort is things smile

Yes I've had some developments! But all in the netting stage.

Tumtimes1 Wed 18-Sep-13 14:06:28

Whoop! So exciting! x

brownstag Wed 18-Sep-13 19:53:01

I went round to my grandparents-in-law for a meal last night and read their Times. Brilliant, Free. My grandad-in-law found me the paper, and asked which article I wanted to read. I told him, and he said, 'Oh, I definitely won't be reading that.' And then proceeded to sing a made-up song about babies 'going down the toilet' and laughing away to himself, very pleased with his composition. Having obviously forgotten that only a few months ago his own great-grandchild 'went down the toilet'! Maybe he didn't actually know; the women in the family all did. I inwardly seethed throughout the meal, but didn't say anything, because I wouldn't wish to inflict on him the horror of the realisation of what he's said. He's in his eighties, not senile, but getting a bit vacant on occasions.

teamdozie Wed 18-Sep-13 19:56:00

Hi everyone..

How are you all? Not been on here for a while.. What have i missed?

Been struggling recently as nothing has happened with me and im getting a bit despondent..

Free i missed the article so i will have to subscribe to the times.. Im looking forward to reading it..

x

freelancegirl Wed 18-Sep-13 21:44:12

OMG Brown! That's awful. What did DH say? Oh I've just seen he's a grandad rather than FIL. Still a bit crap though!

I am guessing I might have to subscribe too Dozie just to check it out online. Getting some great feedback from it.

freelancegirl Wed 18-Sep-13 21:55:19

Someone posted this online somewhere.

sameoldIggi Wed 18-Sep-13 22:53:34

Free sad
Well done

sameoldIggi Wed 18-Sep-13 22:54:53

Sorry, meaning that reading it made me sad, despite knowing your experiences it is different written down that way? And well done for getting it out there.

LunaGL Thu 19-Sep-13 09:19:17

Hi all

Am new to all this but felt inspired to join after reading an amazing article in The Times by Lisa Nand on Tuesday. It was like she was describing my life.

I am just going through my 7th miscarriage and have never made it past 8 weeks. Like most of you I feel that I have had every test and scan known to man and in Dec last year went to see Prof Quenby after learning about NK Cells. Felt I was clutching at straws but there really wasn't anything else to test.

I have 15.8% of uNK Cells but am unsure if that is classed as high or exceptionally high. Either way I started to follow the Professor's recommended treatment programme of Progesterone pessaries together with 40mg Prednisoline whilst also taking Pregnacare Plus omega 3. Am also meant to include Heparin but I have Von Willebrands disease (a form of haemophilia so that treatment is still not confirmed). Have tried Aspirin but lost twice on that.

Anyway even with all the new stuff knocking around in my system, I've had no joy as I miscarried at 6 weeks again.

Following the article I now have an appointment with Mr Shehata to see if there is an alternative combo of meds that he can recommend, I'm not sure who Dr Gorgy is that quite a few of you have mentioned and any advice that you can give me would be VERY appreciated.

Is it wrong to feel relief that I have found this thread and see that I am not on my own??

LunaGL Thu 19-Sep-13 09:25:58

Whoops you can so tell that I'm new to this - I didn't read to the end of the threads and have just realised that Free wrote the article - doh sorry!!

Anyway looking forward to learning lots from you all.

sameoldIggi Thu 19-Sep-13 09:58:45

Welcome, Luna, sorry you find yourself here but you have definitely come to the right place.
If it's any help, my 4th mc was on treatment similar to yours, my 5th pg then resulted in ds2.

LunaGL Thu 19-Sep-13 10:06:56

Thanks Same

Prof Quenby did say to give it three goes but its such a huge emotional and physical "trial and error" thing to go through. Its the uncertainty of not knowing what will work and wondering if there's anything better 'out there'. Hence me now going to see Mr Shehata

Bakingtins Thu 19-Sep-13 10:34:57

Hi Luna I'm a patient of Prof Q as well, my NK cells were 16.33% and she said that was high, if they were >20% then she'd be more gloomy about my chances. I'm just about to embark on first go with her treatment. I'm sorry to hear it didn't work out for you sad
It's easy for them to say give it x number of tries, it's not so easy when it's you going through it. This is our final try where have I heard that before? though I already have 2 children so maybe it's easier for me to admit defeat. We don't have the money, the time or the emotional strength to keep seeking another treatment, another doctor, though obviously everyone has their own limits. For us it's Prof Q or nothing.
I think free had it exactly right in that article when she said it is almost impossible to finally draw that line, because there is always the chance that the next pregnancy will be the successful one. I feel like I'm so miserable about losing 4 babies that losing 5 wouldn't make that much difference in the long term.... will I feel the same if it's potentially six.. or seven..? I think DH will put his foot down and say we have to let it go.

Arianrhod Thu 19-Sep-13 10:58:53

luna Welcome to the thread, and so sorry that you find yourself here. Mr Shehata's protocol is virtually the same by the sounds of it - 25mg pred from ovulation rising to 40mg pred on BFP, intralipids & cyclogest on BFP, and baby aspirin - except that for some people he also prescribes hydroxychloroquine. Dr Gorgy however tests for a much wider range of issues than Mr Shehata, and has a different protocol depending on the results.

If you are one of those lucky enough that Mr Shehata's protocol works for you, as have been so many lovely ladies on this thread (and some no longer with us on the thread), then it works out wonderfully. We've had many successes here on the Pred thread (that free started). However do bear in mind that there are things that Mr S doesn't test for (that Dr Gorgy does) - but of course extra testing costs extra ££. Hopefully you are one of those that Mr Shehata's protocol works for, it does for many ladies.

LunaGL Thu 19-Sep-13 11:12:14

Baking I'm completely with you on where to draw the line. DH and I haven't managed to start a family yet and as he's already 40 and I'm fast approaching it, I feel under huge pressure to find a solution that works (if anything like that exists).

Arian thank you for the info. My DH and I have been saving our whole lives for a 'baby fund' as we knew we'd have no financial support when the time came to buy things and go on maternity leave. Seems a bit stupid to keep holding onto this small pot of money when we haven't managed to have a baby so this is what is going to pay for treatment. Problem is that it'll probably cover very little but it's all we have so I will look into Dr Gorgy as well. Maybe I can be tested by both for a clear picture of all my "issues" and then build a treatment programme from that.

It's so easy to go mad with what to do for the best.

Arianrhod Thu 19-Sep-13 11:16:26

luna I know what you mean, it's so hard to know when to say 'enough testing'. Bear in mind that Dr Gorgy does all the testing that Mr S does, he just does more as well (for example, 'hidden' infection testing, DQ alpha matching, and a bunch of others that people like duggs would be able to tell you about), so probably not worth getting tested for the full range of tests that both do, as you'd be duplicating tests.

Arianrhod Thu 19-Sep-13 11:17:45

luna I meant to say, do you have private medical cover at all? If you do, check your terms, you may find that you're covered for some (if not all) testing for recurrent miscarriage. Quite a few of them will not cover pregnancy, but they will cover miscarriage testing. Just a thought.

LunaGL Thu 19-Sep-13 11:52:06

Arian you are a genius and I am sending you a HUGE virtual hug grin

I have Bupa cover through work and although they have covered some of the investigation tests that I have had done in the past, I didn't think that they'd cover me for anything I had via a private clinic. Must engage brain more hmm

Just called them and they will cover the initial consultation and follow up!! That's going to save us a lot which is great. They will also cover the NK Cell test if it is done via a blood test but won't cover biopsies so I will have to check. Either way though I need the test so there's no discussion to be had.

I will keep Dr Gorgy on standby as Bupa don't work with him at the moment so that's the deciding factor for now. If DH and I decide to have the extra tests then that's what we'll do. Just have to wait for my appointment now, but feeling positive about actually doing something and being proactive.

Thank you thanks

Arianrhod Thu 19-Sep-13 12:02:34

Ah wait, I have more news for you though - they don't work with Dr Gorgy, but they DO work with his colleague Dr Eskander, you can work it by doing everything through him if you want Dr Gorgy's comprehensive testing. I investigated this back when I was going through my second lot of testing. I had all my testing done with Mr S through Bupa too - they covered all of my blood tests, every single one of them, which was darn lucky. I also asked Mr S to test me for a couple of things that he doesn't usually do (and doesn't believe in treating, which is utter madness as one of the problems this turned up is the one that is causing 90% of my problems, but that's another story) and they were covered by Bupa too. You should be able to get through any blood tests you need provided they're for recurrent miscarriage testing.

sameoldIggi Thu 19-Sep-13 12:09:05

As Mr S helped me get my baby, I'm obviously a fan, but if I was looking for something further than the test carried out by Prof Q I wouldn't go to see him, as I think they would be too similar. I would use the consultation the insurance might pay for to see Dr G's colleague. (Ari that's really good intel!)

Tumtimes1 Thu 19-Sep-13 12:10:26

Hi Luna welcome!
Yup Arianhod is right, Dr Eskander takes private patients and will test just as Mr Gorgy would.
My work private health care doesn't cover me for recurrent miscarriage, how crap is that!
xx

Arianrhod Thu 19-Sep-13 12:11:32

You wouldn't believe the research I have tucked away iggi .. smile

sameoldIggi Thu 19-Sep-13 12:17:41

I am now picturing you like this Ari in secret agent mode

Arianrhod Thu 19-Sep-13 12:31:18

I can't see that pic, it says 'referral denied', I don't have permission to access the file. But if someone's been stalking me with a camera, I'm going to be worried ;)

sameoldIggi Thu 19-Sep-13 12:36:37

Sorry, was just a pic of Nikita from the TV series!

suemays Thu 19-Sep-13 17:45:25

Hi luna and welcome to the thread. I am another fan of mr shehata but couldn't get on with the steroids he prescribed me from ovulation. They eventually messed up my cycle and stopped me from ovulating - it's happened to a few ladies on here. I then went on his superovulation plan to force ovulation and had two chemical pregnancies. I then fell naturally a few months later after a break from the steroids but had to terminate the pregnancy at 22 weeks due to a fatal defect. In terms of the miscarriage treatment, I believe it did work as he added hydroxychloroquine to the other drugs with that pregnancy. I had 5 miscarriages before the two chemicals on baby aspirin.
I then couldn't get pregnant again after taking steroids so switched to mr ndukwe at zita west (also had a cancelled ivf cycle this year with a local clinic!) He gave me intrallipids before I was pregnant to suppress my killer cells which were to be repeated every 3 months if not pregnant. 6 weeks later, I got my bfp so am now about 5 weeks so still very early days for me. I am still taking hydroxychloroquine and restarted the steroids after my bfp. Anyway, my long rambling message was to show you that there are also other recurrent miscarriage experts as not everyone gets on with mr shehatas protocol. He is also very expensive for the intrallipids compared to some of the other clinics - £350 a time compared to £165 at zita west. You may need 4 of these in your treatment so it adds up!

freelancegirl Thu 19-Sep-13 21:04:29

Luna Glad you made it here. I'm really excited about you joining us and I hope this is the time it's all going to work out for you. Everyone here is so full of research we could probably get a collective doctorate smile

duggs1976 Fri 20-Sep-13 07:43:09

Welcome luna. As the ladies have said dr s works for many, but sometimes there are further issues and dr Gorgy is great at those. Pred quenby if you are further north and then there is dr ndwuke part of zita west clinic now. But many IVF clinics and fertility centres treat immunes as part of their programmes now. If I wasn't paying then dr Gorgy will ensure everything is covered from the offset. I was paying so only saw him 2 yrs down the line unfortunately. Still better late than never. Whoever you go with treatment is similar and there are reported successes across all. 85 percent is a banded about figure but I guess the 15 who things don't work out for could be down to a number of things and it is about when you walk away. Some people have children or a child and would rather not go through the rigmarole, some run out of time, some get sick as part of life and some we will never know I guess they find alternative routes to get their family. Whatever way the odds are in our favour so buckle in for the ride - hopefully it won't be a long one for you.

LunaGL Fri 20-Sep-13 10:42:17

Thank you all for your great advice and for being so welcoming. It's such an awful subject to become experts on but it certainly helps people like me.
I feel so confused as to who to see and seek advice from. Am based in Leeds so Mr Shetata and Dr Gorgy are quite a trek away which generated a heated discussion with DH. I can see his point that travelling to London for tests and treatments will be difficult, however my argument is that I would literally do anything and go anywhere if it meant that we could to have a baby.
We have an appointment at Care Fertility who are closer to us and who also test and treat NK Cells but it's not their speciallity. We made this appointment before discovering Mr Shetata and Dr Gorgy which just goes to show how limited our research has been. However, they should be able to provide us with a recommended treatment plan which we can then compare with Mr Shetata's.
Prof Quenby's success rates on her prescribed course of treatment are quite low and having had another failed pregnacy whilst following her plan I have lost faith. Having read on this thread about all of the various treatments that you have all been prescribed (some of which I don't know and am slightly nervouse about), there does seem to be more than simply Progesterone pessaries and Prednisoline.

Arianrhod Fri 20-Sep-13 11:04:03

Don't be nervous luna, on this thread there are ladies with a multitude of experiences with the various treatments so we can hold your hand no matter what you get prescribed!

It IS a minefield and there's no one-answer-fits-all unfortunately. As duggs rightly said, Mr Shehata's protocol works for quite a lot of ladies and if your particular problems are within his scope of testing/treatment then you will do just fine. The problem comes if your issues are NOT within his scope - but you won't know that, unfortunately! As duggs has also said, if I had known then what I know now I wouldn't have gone to Mr Shehata, I would have gone straight to Dr Gorgy. BUT that is only because it turns out my own NK-fuelling problems are caused by something that Mr S doesn't routinely test for and doesn't treat even if it is tested for, he doesn't believe that anything other than his own protocol is necessary (which unfortunately isn't the case for me). I should say that I have a great respect for Mr S and I like him very much, it's just his protocol isn't enough for my own issues. Hopefully you will be a much simpler case (if you know what I mean!) and you'll be as successful as the other ladies on this thread, lots of whom had their precious take-home babies thanks to Mr S's treatment. Those of us for whom it didn't work have largely moved on to try other treatments - but it's a learning curve, and hopefully not one you'll have to go very far along!

/waves to everyone, choccy hope you're still doing great??

sameoldIggi Fri 20-Sep-13 13:10:43

Luna I'd to travel from Scotland to see him - put me off at first but it actually isn't so bad. Get the train. If you are lucky, you don't need to go very often - think I made four trips all in. DH never needed to go, no tests are carried out on him (which I know is a bit hmm in itself).

ChoccyPud Fri 20-Sep-13 13:40:10

Hey there! I'm good just lurking mostly at the mo. scan next Friday so starting to brew a bit about that obv. Am 14.4 today. Still getting nauseous. Yesterday evening was horrible. Not actually been sick but have felt like I was just about to. Pred really does mask it - its increased with a vengeance now I'm a week with no Pred! But it's also comforting.

Welcome Luna. Sorry you find yourself here but it's great you've found this thread and hopefully we can help. I've been here two years. This is the furthest I've got having had 7 mc's inc 3 on treatment with Mr S. I'm an enigma to him in that regard! It seems to me that the combo of Pred and hydroxy is proving most successful but what he prescribes will depend on your particular situation.

Hey iggi lovely to see you here. Hope all's well? I have to say that whenever I have need of prune juice(!) I still think back to your first experience of it when you just posted "that was quick" a very short time after saying you we're going to have some. Still makes me lol smile

Mel3062 Fri 20-Sep-13 18:58:55

Hi Luna I'm in York smile
Been on mr s programme over a year and miscarried at 6 weeks but saw hb. Had to have 2 lots if humira and now on hydroxy. Sadly just had a chemical sad had biopsy with prof quenby last month and apparently my cells are 48% so v high and she's not surprised I've had a chemical sad her advice is to stop all meds and do repeat biopsy. Now I don't know what to do! Didn't realise prof quenby success rates were low sad x

Drinkprunesbutstaynexttotheloo Fri 20-Sep-13 20:07:01

'nuff said wink
Great to see you at 14 weeks Choccy. I thought I'd escaped ms this time (last time) but it was waiting for me on the other side if the pred grin

Drinkprunesbutstaynexttotheloo Fri 20-Sep-13 20:08:31

of the pred.
<ponders whether loose bowels is the ideal claim to fame> <decides to take what I can get>

Bakingtins Fri 20-Sep-13 20:15:51

Dr Quenby said to me with NK cells at 16% my chances of a successful pregnancy without treatment were less than 20%, with progesterone from day 21 only about 40%, with pred as well could be up to 80%. I think she doesn't yet have the numbers in a big study to back that up, it's only since she started working with Prof Brosens that they've been combining the two things. She did say that as NK levels rise prognosis is worse.

I think if you have the money and the ability to travel, going for the most comprehensive testing is the best idea. We just decided with limits on finances and the time I can take away from family for treatments etc that Prof Q's fairly fixed price, fixed number of interventions was as far as we could personally justify going. I just hope that for once I am on the lucky side of the statistics after a year of every time being the unlucky small percentage where it goes wrong again. If nothing else, I have a diagnosis and an explanation of what happened to my babies. I think I will have to make my peace with that if the "one last try" doesn't work out.

Arianrhod Fri 20-Sep-13 22:32:16

iggi ROFL at your latest name change! grin

teamdozie Sat 21-Sep-13 09:01:08

Morning Ladies

Sue i was just reading your post saying that the steroids stopped you from ovulating.. This month is the second month i have been on constant highs on the fertility monitor.. (no sign or symptoms of OV)

I dont know what to do.. Dr S said he would put me on the super ovulation programme but im so confused and its stressing me out..

Its all i think about.. When i asked him about the drugs stopping my OV he said no it would just make my cycles longer.. (so far the latter hasnt been the case).

Im wondering now if its worth just trying naturally and then taking the steroids at PPT.

This is supposed to be fun and one of the happiest times of a couples life and i feel its slowly turning into a drama (nightmare is a bit harsh). And i feel like crying all the time..

Would you recommend seeing someone else? Any advice would be much appreciated..

xx

duggs1976 Sat 21-Sep-13 10:10:09

Teamdozie plenty of us take steroids from bfp and have gotten pregnant ok and some prescribe just that. It's a difficult one because if you are not ovulating you have no chance to conceive. Dr S doesn't really acknowledge this issue apart from super ov which gives him more money each month so is a tough one. I would come off and start from bfp, it seems progesterone is being used more and more too. Best of luck.

tynecorbusier Sat 21-Sep-13 10:42:28

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

teamdozie Sat 21-Sep-13 10:52:37

Thanks duggs

I have made an appointment to go and see him.. i will ask him to maybe take progesterone from OV instead of BFP and maybe take steroids from BFP instead of OV..

DH and i are disagreeing on this but i can only ask.. Plus ill maybe ask for the drugs for super ov if i do the switch..

Im getting so stressed and thats not helping me either

xx

duggs1976 Sat 21-Sep-13 11:48:02

What does DH think?

teamdozie Sat 21-Sep-13 13:07:36

DH thinks i should do what Dr S says as im no Dr..

I should relax as he has had lots of success and not to stress.

Not sure he understands how i really feel... my body isnt doing what it should and now i have another problem to contend with

suemays Sat 21-Sep-13 16:01:45

I spoke to Mr S about my ovulation stopping last year and he is aware it can happen. He said I could go 'cold turkey' on the hydroxy and take steroids from bfp if I wanted to - I never tried that. The other thing he suggested was to take them for only 10 days at a time - I tried that but it still had the same effect. I did conceive on Superov but had 2 chemicals.

I did a bit of research and Zita West say that steroids do effect ovulation and all the hormones so advise to do intrallipids before pregnancy around ovulation which will then last 3 months and to keep repeating every 3 months until pregnant. They believe that is enough to surpress the immune system without the steroids. They also suggest a high protein diet with limited wheat and dairy which I was following before this BFP. I also took DHEA and CoQ10 so not sure which one was the winning ticket. I am also still taking hydroxy and since BFP have added in magnesium, selenium and vit e as its supposed to help with recurrent miscarriage (another ZW suggestion from their book). I really liked their holistic approach and the fact they dont seem that money grabbing!

My local fertility clinic prescribed me letrozole (75mg) and it only cost me £5 at Asda pharmacy. I didnt bother with the HCG shot or follicle tracking scan as the consultant at the fertility clinic told me there was research to say that taking the HCG shot can damage the egg if taken after ovulation. I have a clear blue fertility monitor but didnt use that as it never seemed to pick up my 2 fertile days, so we just DTD almost every day on holiday which I thought might have been my fertile time. So you can do it cheaper if you go and see a local fertility clinic. They might offer you clomid but I asked for letrozole as had conceived on it before!

Maybe you should have a day 21 progesterone test to see if the levels are OK? That might indicate if you need to take it from ovulation or not. I only took progesterone from BFP but did try it from ovulation last year and it made no difference.

freelancegirl Sat 21-Sep-13 16:36:26

Sorry I can't help Teamd, I don't know anything about it. Very stressful though. Can't stop as I'm rushing around with work trying to get off to see Pebbles for her birthday and buy her a large drink/give her a big hug.

What was that post about that was deleted?! Anyone see it?

suemays Sat 21-Sep-13 17:22:06

No Free I didnt see the post so have no idea what it was about.

Team men will never understand how we feel. About 3 months after I had to terminate my last pregnancy at 22 weeks, my DH said he thought I should be over it by now!!! They dont have the same connection, desire or need as we do but I guess that's natures way. Have you tried acupuncture to relax? I swear by it. I also have some relaxation Zita West Cds which are great as you normally fall asleep when they are on but you subconsciously hear the suggestions. There is a good TTC one - if you PM me your email address I can send you the M4a file if you want?

Pebbles I was going to say - have you tried acupuncture too? It can help with failed IVF cycles and people who cant conceive naturally.

Buzzybee123 Sat 21-Sep-13 18:07:01

team You might not be a DR but you know your own body, I went to see Shehata privately as I was not getting on with the pred or his NHS staff hmm he said as my level wasn't too high that I should take progesterone from ovulation and pred from BFP, after a few months I asked for the Hydroxy and he agreed to letting me take it,I've not had any problems with taking the Hydroxy. I agree with duggs about the SO being a bit of a money making thing for him, he will organise the drugs for you and then want to scan you and tell you when to trigger, if you are on the tablets its not too costly but he had to put me on gonal f and that with scan was costing me £400-600 a month. SO is something to consider as it does work for some but I don't think its the answer to you not ovulating now.

choccy I didn't find the pred masked anything, I was and still am sick, has your GP prescribed you anything for the nausea?? I'm sure all will be fine at the scan

pebbles thinking of you

teamdozie Sun 22-Sep-13 09:40:11

Morning everyone

Sue & Buzzy thank you for all your advice and support, i have made an appointment to see him next month as DH thinks we should give him a year.. (thats too long in my eyes) but hey ho..

i have another spanner to throw in the works this morning.. CBFM still says high and its day ten of testing but ive been getting cramps, the ones you get with OV.. so i decided to use some CB digital ovulation tests i had lying around and .... it says PEAK....

Confused . com is an understatement.. So do i take the roids or not? give it one last month till i speak to him?

OMG....

I have decided to try reflexology again as i didnt get on with acupuncture and we will give Dr Ndwuke at ZITA west a go if nothing happens by Xmas..

Thank you for all you support once again girls..

xx

PS Dont forget to give me your thoughts on taking the tablets.. :-)

brownstag Sun 22-Sep-13 11:23:37

Teamdozie, are you very familiar with your temps pre- and post-ovulation? If your temperature is high it suggests you've already ovulated. What cycle day are you on?
With my DS, who's 4, I took pred from a few days after BFP as that was my first appointment with Mr S. But ttc no. 2 waiting to conceive first didn't work and after 2 years of nothing I started taking 10mg pred from 4 dpo, and then 25mg on BFP. This worked once this year, and got pregnant in March, although I miscarried due to chromosomal issues. I am continuing with this regime, plus hydroxy, as it means taking the minimum of steroids. My NK cells are high but not very high.

brownstag Sun 22-Sep-13 12:30:24

To clarify what I meant, maybe taking lower doses of steroids for less time might be more beneficial. But the problem is getting to ovulate in the first place. Maybe do a superov next cycle. This might kick-start something that will keep on going by itself. I find letrozole has an effect on the next natural cycle or two, by making me ovulate 'on time' rather than late as is more usual for me, and also giving me a nice long luteal phase, rather than 10 or 11 days I normally get.

teamdozie Sun 22-Sep-13 14:29:30

Thanks Brownstag

I am on CD18. Im going to see what happens this month and then start Super Ov next cycle..

Ive never done Basel body temp.. maybe i should..

I will prob do it from next cycle.. as i reckon its too late this month..

xx

brownstag Sun 22-Sep-13 15:22:18

I realise now I misunderstood your original post, sorry; I thought you were saying your temps were high, but you meant fertility was high on the monitor.
So it looks like you are going to ovulate soon. Better get busy!
I find temping very good and use Fertility Friend to track my temperature; it takes a few cycles to work out what's what, but I wouldn't do it every day forever as it can get a bit obsessive, interfere with your sleep even (because if you wake early, you think, 'Should I do it now, or later?' and then possibly not go back to sleep, etc). I now use it just before ovulation because my temperature dips significantly just before, and then for a few days after to confirm it. For me 36.2 to 36.5 are always pre-ov, 36.7 to 37.3 post-ov. It may or may not be too late this month, depending on when you ovulate, as you need 6 pre-ovulatory temps and then 3 post-ov for the software to confirm ovulation.

suemays Sun 22-Sep-13 17:09:29

team I would start the steroids in a few days incase you get preg this month. You would blame yourself if you got a bfp, didn't take the steroids now and then miscarried.

Drinkprunesbutstaynexttotheloo Sun 22-Sep-13 19:38:51

I used to stare for hours at my fertility friends charts! But, I got pg faster the times after I started charting. Have never used the monitor thing so can't compare.
Sue regarding what your dh said - I remember hearing the minister at a remembrance service speaking about her miscarriage, which happened eighteen years ago. I'm not saying it hadn't got easier for her with time, of course it has, but she still felt the loss all those years later - a few months is nothing. Tbh a few months isn't even long enough to get over it physically.

duggs1976 Mon 23-Sep-13 11:01:33

Anyone know much about the surrogacy route. So sick of this ttc journey I need to investigate as may be an option for us before adoption?

freelancegirl Mon 23-Sep-13 12:27:29

I don't Duggs but I would like to know more about it so let s know what you find out.

I too loved temping and chalking all my symptoms up on fertility friend. Might do it soon again actually, not to TTC by just to see what the f@ck is going on with my cycle and it hasn't really returned properly after DS, which might be a worry for future fertility. I did only stop BF in august but had one cycle over 6 weeks ago now.

Buzzybee123 Mon 23-Sep-13 13:05:18

duggs all I really know is that there are agencies who can help you find a surrogate. They are not too profit from it and you pay all the expenses for them, it can cost around £15,000.

mollieboo Mon 23-Sep-13 17:37:11

Hi everyone

team even though I get pregnant quickly every time we try, I ended up doing the superovulation plan under Mr S a couple of times as it took the stress away of finding out when I was ovulating and timing the steroids, as the pred did seem to make me ovulate later every month. It is stressful isn't it.

drinkprunes love the new username grin

Hi duggs how are you doing? I've been looking into surrogacy over the past few weeks. Really don't know if I can try again, terrified for obvious reasons. Surrogacy UK and COTS are the two main agencies who provide surrogates, they've got lots of info on the websites including how much you need to pay the surrogate for expenses. You pay quite a lot to join, then you pay a surrogate as buzzy said and I think the ivf is a separate cost on top of that. There's a private facebook group for surrogacy I think but I'm not a member. Also you don't get paid leave from work at the moment if you have a baby by surrogacy, I think the law is changing in 2015. My dh is well up for this path instead of trying again so the decision is all on me, my head is all over the place! Good to have other options to think about though isn't it...

Waves to all x

Buzzybee123 Mon 23-Sep-13 20:58:10

molieboo that is terrible if you don't get leave for surrogacy, you do for adoption and it should be the same.
Its a big decision, I do know someone who is trying this route now, but is overseas

brownstag Tue 24-Sep-13 08:23:04

I think they are looking to change the law on this but it won't in effect for a couple of years.

Clabbage Tue 24-Sep-13 16:14:28

Hello
I was just reading a blog about a lady who has lost 4 pregnancies (twins plus two singletons). All late losses 20+weeks from a condition called CHI. She has now found a surrogate who is 23 weeks or so with her twin boys. She is quite inspirational (I've followed her story on and off for a while). Just thought she may be someone receptive to contact re surrogacy. I will see if I can find a link to her blog. I am rubbish at posting links so bear with me!

Clabbage Tue 24-Sep-13 16:18:56
Buzzybee123 Tue 24-Sep-13 16:37:57

clabbage I remember this lady from when I was on baby centre, her story is inspirational thanks for the link

duggs1976 Tue 24-Sep-13 16:53:35

Will have a read thanks clabbage grin

mollieboo Tue 24-Sep-13 18:13:55

I've been following that story too with interest. She's been through so much so it's lovely to hear she's having twin boys through a surrogate now.

We had results from the hospital today - no known cause. Which the consultant said means either it was a one off or there is something which caused Joey to die which they haven't discovered yet. The consultant said the treatment plan was working and it wasn't immune related so the only benefit of a surrogate would be so that I wouldn't have to take steroids and would go through less stress, as if it is an undiscovered thing it could happen again, but it's unlikely. So I think we'll try again before moving onto adoption. Terrified though and we're waiting till next year now.

Clabbage Tue 24-Sep-13 21:44:03

mollie I can't help but wish that you had a clear reason. As I know I have expressed to you via pm, my experience of losing Harry to SIDS which is effectively 'your healthy bouncing baby boy has just died and we have no idea why' left me desperately disempowered. I can begin to imagine the fear you must feel moving forward.
Why the hell do we have to rationalise the loss of healthy babies?
Take care of yourself and of course OH as I'm sure today has brought mixed feelings. Much love

Arianrhod Tue 24-Sep-13 22:09:48

clabbage Thanks for posting that. I have followed her story for a long time but because I don't go on BC these days I didn't realise she'd gone for s surrogate. it's so nice to think that after all the heartbreak she will finally get her babies. Just goes to show that persistence can pay off.

teamdozie Wed 25-Sep-13 20:29:20

Thanks
Brown, Free, Sue and Mollie..

Just to keep you posted i peaked on cycle day 19 according to my CBFM. So lets see what this month holds as it will be our last of trying for ..... well who knows..

Things have gotten to DH and he has just started telling me.. so i have decided that we should stop until we become a couple again.. thats if the damage isn't irreversible.

Ladies i will keep you posted with regards to this month.. and THANK YOU for all you support.. Its been amazing..

Duggs

I have a colleague who went to the states for surrogacy, and he said he chose there as the law states that the baby is yours from the very moment it is conceived where as in the UK the surrogate has 6 weeks to change her mind? Dont quote me on it..

I hope it all goes well..

xx

brownstag Thu 26-Sep-13 09:11:54

Really sorry to hear about you and your DH, Team and I hope you can sort things out. It's such a stressful business, this. My husband and I have gone through many bad patches due to the stress of ttc. I've only just got him back on board with trying again.
Big hugs, Mollie.

mollieboo Thu 26-Sep-13 17:20:32

Thank you Clabbage. Being given no reason is the worst thing. It must be so hard to accept losing Harry in that way even now.

Hi team, I hope you're doing ok. Maybe this month will be your month, fingers crossed. The stress of what we go through on here is enormous and it does put huge pressure on relationships. Trouble is its hard to think about anything else. It feels like your life is on hold all the time doesn't it...

Bakingtins Fri 27-Sep-13 07:48:39

BFP. shock hmm Trying to find some positivity.

freelancegirl Fri 27-Sep-13 08:14:10

I'm sorry to hear that too team. It is indeed very stressful on the relationship sometimes.

Mollie that's upsetting I'm sure. What next do you you think?

Baking - a BFP! Agghhh! What do you have to do now?

As a matter of interest has anyone ever started the treatment late and had a successful pregnancy?

duggs1976 Fri 27-Sep-13 08:30:42

Quiet congratulations bakintins grin
Free there seems to be variations on when people are told to take pred from. Some from bfp and some from ovulation as you know. I think if you don't conceive quickly then people taking pred month after month then fall into infertility category as it mucks up cycles (and life). So I think quite a few start from bfp and are ok. They may come forward? I think lemon didn't start at all and is well into third trimester. It is strange how the nk cells fluctuate so much. ARGC say to re test nk cells every 6 mths. Wish I had so I would have known they had risen so much and could have adjusted my medication but we live and learn. Hydroxy is another interesting area as pebbles wasn't on it for this one either so there does seem to be a clear correlation. I wonder if hydroxy would work alone? Don't suppose we will find out as who would risk it. Anyway let's see who comes forward?

brownstag Fri 27-Sep-13 09:30:48

Brilliant Baking.
How late is late, Free? With my DS I started pred about 18dpo as that was my first appointment. About 4 days after I got a BFP. So not very late, but some of my other pregnancies wouldn't have even got past those 4 days.

ChoccyPud Fri 27-Sep-13 10:14:03

Whispered congrats baking.

Free someone started Pred at 6wks and all was fine for her. You'd have to go back to thread 1/2 to check who.

All fine here. 15.4 scan all looking good and currently plugged into my last intralipids! And taking my last hydroxy and cyclogest tomorrow. Can't wait for total freedom from meds. It'll just be aspirin and vits then. Still being hit by flashes of nausea at random times of day. Its beginning to register that I need to start acting like this baby is going to be here in about 24 weeks time!!!

freelancegirl Fri 27-Sep-13 10:53:17

Wow Choccy that's amazing news. It's such a weird feeling being treatment free isn't it. People treat you like a normal pregnant person but you don't always feel like one.

I remember one of the girls started at 6 weeks yes. Can't remember who though.

mollieboo Fri 27-Sep-13 11:31:46

Whispered congrats baking!

Free we're taking the rest of the year off and then we'll probably try again on same treatment.

Free also I've always taken pred from ovulation. I got pregnant once and didn't know as I still had a period so I started pred about a week after period and miscarried a few days later.

Seems from others on here that hydroxy is a big success and I was taking it in my last pregnancy, but the doctor who does my intralipids said she wouldn't recommend taking it in pregnancy. I still will next time as I'm too worried not to, no-one has heard of anything negative about it have they?

freelancegirl Fri 27-Sep-13 11:36:34

There are no contraindications with taking it in pregnancy, I remember my gp looking it up when I was prescribed it.

freelancegirl Fri 27-Sep-13 11:37:35

But no, haven't heard anything negative at all. Mr S is the only one using it as far as I know and seems to be having a lot of success with it.

VillageMum Fri 27-Sep-13 12:50:39

Hello ladies. It would be such a comfort and relief if I could join this thread. I've found my way here as a direct result of reading freelancegirl's article on recurrent mc in the Times on 17 September - so a huge thank you to free.

I have just turned 44 and had my fourth missed miscarriage in July (the second I've had in the last 12 months). I have a DS (from a former marriage) who's now 12 and a DD aged 2, with my husband. Two healthy children, so life is not all bad - just these apparently inexplicable miscarriages in between. They happened on either side of having DD, starting when I was just 38 and hardly an old crone. The first one was the most tremendous shock and grief as I'd had a fairly easy pregnancy with DS, and the next three... well, you know. You gather yourself up to get through them, but underneath you are in free fall.

Each of these pregnancies stopped progressing at around 7/8 weeks. After the first we took to having early scans at the Fetal Medicine Unit in Oxford (local to us) and in each of the next three mcs we saw a heartbeat in week 6/7, which would no longer be there by the time I was rescanned in week 9. DD was the miraculous exception - I have no idea why. I took Marilyn Glenville's Fertility Support multivitamin before having her, and was put on 75mg aspirin as a precaution from week 6. But this magic formula didn't work in my last two pregnancies.

We've had all the standard tests - hormones and full thrombophilia, karyotyping. Each time we've been told that there's nothing wrong, that we've just had bad luck, and that these must be chromosomal mcs due to my advanced age. I can perhaps buy that now, at 44, but at 38, when I had the first mc? I'm sorry, but that's hardly ancient - and I then went on to have DD who is perfectly healthy just short of my 42nd birthday! Age could well be a factor at this point, but I have a sneaking feeling that it might not be the whole story.

On 16 Sept DH and I saw a mc specialist who assured us that we've now had all possible investigations that modern medicine has to offer and, since I still get pg easily, advised us just to go away and try again. So when I read free's article the very next day I nearly jumped out of my seat. I rang Mr Shehata's clinic straight away and we have an appointment on 8 October. I now wonder if immune-related 'recurrent miscarriage following live birth' doesn't fit my pattern.

I don't even have a diagnosis yet but I would be so grateful if I could join you during this next nerve-wracking month while we get his tests done - and then hopefully beyond. It seems crazy to say so, but I now wish that someone would just please find something wrong so that we can address it. If the problem is just age - so be it. But I am not going down without a fight!

I have spent the last few days reading back in this and earlier threads and you are the most brave, humane and inspiring group of women one could ever hope to meet. It would be an honour to be able to hang out with you and ask your advice. If nothing else, I hope my advanced years will make everyone else feel blissfully young!

Thanks for reading this long post.

duggs1976 Fri 27-Sep-13 13:03:38

Welcome villagemum exactly why freelance is such a pioneer that people like us can find this thread. You have nothing to lose by trying and if you do get a diagnosis then perhaps ask for hydroxychloride too as it does seem to be dr shehata's secret weapon. Best of luck.

freelancegirl Fri 27-Sep-13 13:10:47

Hello village, welcome to the thread! Really glad you've made that appointment for Mr S and that you found about about the treatment through the article. That's precisely what I hoped would happen. It doesn't work for everyone but 85% success rate is pretty good going when you consider that most of us are late 30s and more and have had several mcs by the time we've found the treatment. In excited for you hope it goes well. It's a great place for info and support here. Although we do keep losing people from the thread when once they've had a baby smile

Bakingtins Fri 27-Sep-13 13:18:27

Hi village and welcome. You've cheered me up that at 38 I am "hardly ancient" !

Started 20mg pred today, already on the Cyclogest, and have a scan at 5+4. If that shows intrauterine pregnancy I start clexane as well. Buckled up for the roller coaster ride....

LunaGL Fri 27-Sep-13 13:36:25

Fingers crossed Baking

Hi village I too have an appointment with Mr S on the 8th Oct as a result of reading Free's inspirational article. This thread and the amazing women on it have been a great source of information and support and I hope that it helps you as it has done me.

Went for an appointment at Care Fertility Sheffield after DH heard about a consultant there. As this is really the first time he has really registered the seriousness of our situation and become actively part of the research I went along with the appointment. Met Dr Shaker who talked a great talk on IVF but as I repeatedly reminded him, we manage to get pregnant but not maintain past 8 wks. Care run the same tests as most clinics using Chicago and treat with the same meds including intralipids. I kept pushing for success rates but he just kept saying no two cases were the same hmm. Finally admitted that they had never treated a woman who had experienced 7 mcs.

This leads me to my question to you all. Is it possible to follow Mr S's treatment programme but to have the IVF more locally? Do I even need IVF which is what Dr Shaker seemed to think I need? Am worried about how to go through IVF in London when living in Leeds. Can anyone offer any advice or at least tell me how Mr S works?

suemays Fri 27-Sep-13 13:52:16

lunar mr s is happy to follow the immune therapy alongside ivf at another clinic but he might insist you go to him for intrallipids. My local gp prescribes the mr s drugs for me so that I don't have to keep going back there but then I have been a patient of his for a while so he has had a lot of money out of me! I tried an ivf cycle at a local clinic alongside mr s drugs but the cycle was cancelled. I have since fallen pregnant on letrozole.

suemays Fri 27-Sep-13 13:53:56

Hello to villagemum too!

freelancegirl Fri 27-Sep-13 13:54:58

Start necking those drugs Baking!

Luna if you've been getting pregnant up until now ok then why do they think you need the IVF? Glad you have the appointment with Mr S, let us know how it goes. The other guy you saw sounds like he really doesn't have the RMC expeience you need. I imagine, from what I've seen with other people, if you have got pregnant ok so far Mr S won't mention IVF or if you needed a bit of help might mention super ovulation programme before IVF.

freelancegirl Fri 27-Sep-13 13:56:47

Crossed posts Sue, how is it going?

My GP also converted my private presriptions and then carried on prescribing when I needed it, not all would be so helpful. Take my article along!

LunaGL Fri 27-Sep-13 14:10:02

Thanks Sue. My GP practically had a nervous breakdown when I showed her the prescribed medication that Prof Quenby recommended. I ended up having to buy it all privately which wasn't the end of the world but I did get a BIG supply so have at least 1 full months supply of Pred and Progesterone.

Either way it's good to know that I can follow his programme and have IVF if required elsewhere. Should I be asking for Hydroxy and intrallipids from the start as I have already had a mc on Pred and Progesterone? Until I have the appointment I'm not too sure how it all works.

LunaGL Fri 27-Sep-13 14:12:41

Hi Free what is super ovulation. Seen it mentioned here quite a bit (am learning a whole new mc language)

freelancegirl Fri 27-Sep-13 14:21:28

It's a programme Mr S has used for people who have James with getting pregnant but are not yet at the IVF stage, as far as I know. The super ov folk now have their own thread for assisted conception after miscarriage somewhere. Someone will be able to link to it.

duggs1976 Fri 27-Sep-13 14:27:59

Yes insist on hydroxy. There is a spin off thread assisted conception after recurrent miscarriage that has a lot of us who are on super ovulation or who have been. It is for women who ovulate but just might need some help in timing and maybe produce 2 eggs per month. You either take letrozole 2.5, 5 or 7.5mg days 2 to 6 then a mid ovulation scan on either day 10 to 12 then depending on size of follicles a trigger injection and timed intercourse. That's it. Or else you may need injectables gonal F which puts cost up a bit. Usually £300 a cycle to £500 depending on what drugs you get given.

LunaGL Fri 27-Sep-13 14:28:32

I googled it which although informative, was rather frightening too. At least I have a better idea of what to be asking for. Roll on 8th Oct!!!

VillageMum Fri 27-Sep-13 14:55:14

Thank you so much everyone for making me feel so welcome. The loneliness of trying to research my condition without any real input from the outside world or medical profession was beginning to drive me bananas!

duggs thank you for the tip about hydroxychloride - will ask him! I am ready to swallow anything if it's recommended.

free your article was simply brilliant. You put in words exactly what I've been feeling after each mmc - the horror, bewilderment, powerlessness; anger towards the indifferent medical professionals who dealt with us; terrible sense of responsibility towards the child I could not help, even though I knew, rationally, that these losses were not my fault. I read it aloud to DH that evening and he was almost moved to tears. Would love to see your documentary too.

Bakingtins congratulations! And yes, you are a mere spring chicken! You positively have years and years of childbearing time left!

LunaGL We are seeing Mr S at Epsom on the 8th at 12h15. I'll be the one with the grey-haired DH, loopy toddler and adolescent boy playing on iphone in tow (unless I can park DS at a friend's house first!) Re IVF: the mc specialist we saw this month (who is also attached to an IVF clinic) told me that if I can still get pg naturally that would be the better way to go, as success rates for IVF aren't always great, esp at my age when using your own eggs. Since everyone was saying my mmcs must be age-related chromosomal ones, I asked him then why not do IVF on me with PGS (pre-implantation genetic screening)? But the success rates there are low too - and I now believe that if the underlying problem is immune-related, then any IVF pregnancy will fail anyway. I now feel it would be best first to probe for any immune issues, follow Mr S's programme if they're present, and go the natural route. Hope we both find answers in due course...

sue I've been awed by your resilience, having read your story on this thread. I hope everything is going well for you.

Would love to write more but running out of time as usual. Big wave to everyone else!

LunaGL Fri 27-Sep-13 15:07:41

Village I'm also seeing Mr S in Epsom and have an 11:45am so will most definitely see you there. I'll be the one looking determined (and hopefully not too horrified). Half an hour doesn't seem like a long enough appointment but I guessing he knows the key questions to ask in order to know what to test for.

VillageMum Fri 27-Sep-13 17:49:13

Luna I've just gone back a few pages and read your history - I'm so very sorry that you're going through this for the seventh time, and after seeing Quenby too. Fingers crossed that Mr S will make all the difference! Just realised I won't actually have DS in tow as he'll be at school (keep thinking his half term is weeks earlier than it actually is) so look for the two oldies with the toddler. Yours must be the appointment just before mine. Please say hi if you'd like to; though appreciate that it's a sensitive moment and like me you'll probably be sitting there with anxieties roiling away inside - so understand if you just need to think!

Free and duggs I've read the info about super ovulation with great interest. I'm wondering if this is going to apply to me... On top of the age issue I've had the (for me) new complication since my mmc in July of having my cycles going haywire. I never miscarry naturally so this was my fourth ERPC (actually fifth, since I had another for missed tissue after my second mmc). I've always had clockwork cycles of 28/9 days, with my body treating each ERPC as day 1 of a new cycle. But this time - bizarre isn't the word! I seem to have had 'phantom' cycles, with what appears to be ovulation at the right time each month (have been testing with OPKs), followed by excruciating cyclical pain two weeks later just when my period should again be due - but no bleed. This has happened twice now and I'm on tenterhooks waiting to see if I bleed on 4 October when AF is next due. Spoke to Louise at the clinic about it and she says either my cycles have actually been anovulatory since the ERPC, hence no AF, or there's a chance that I may have scarring causing a blockage, in which case they'll give me a saline scan. What joy. Will be speaking to Mr S about this too on the 8th. I wonder if anyone else has had a similar experience?

duggs1976 Sat 28-Sep-13 07:52:34

Interestingly a friend just sent me a link to an EQ test to assess emotional intelligence. One of the questions was "your close friend had just had a miscarriage, how do you respond?"
A- support her by visiting but not discussing the loss
B- visit her let her talk about her experiences and discuss her feelings
C- support her by suggesting she go out for a good time
D- give her space
I guess a combination is what we find based on who the friend is but the number of people who fall into category A is remarkably high. Although 6 losses and 4 yrs later people have little choice in topics wink
Not sure how your experiences differ, probably not, but interesting in a 25 question survey this was entered. Not
"Grandfather just died" as everybody's grandfather has died or will die. It's a certainty. Nothing unnatural there. And they will only die once. (Sad as is may be at the time).

brownstag Sat 28-Sep-13 08:41:22

VillageMum, welcome. A fleeting reply to one of your questions; I have used ovulation sticks for years now, probably 5 years' worth of cycles in total and a positive was absolutely always followed by ovulation as shown by a temperature shift. I know they say you can gear up for ovulation but then not ovulate, but that's not been my experience, for what it's worth. Charting over the next cycle or two would be one way to find out for sure if you are ovulating, but then you'll probably find out before then anyway with the saline scan. Does Louise mean a blockage that was keeping the blood from 2 AFs inside? It's difficult to imagine that would be possible. Or a blockage of the tubes?, although would that affect AF?

mollieboo Sat 28-Sep-13 09:19:28

Hello, warm welcome to villagemum, and also a belated welcome to luna, sorry I missed you before. Its wonderful that you found out about NK cells from free's article, I hope you get the treatment needed for success. Its hard to believe doctors still say its bad luck when we miscarry over and over again.

Villagemum as brownstag suggested, temping is really good for knowing if you've actually ovulated. I had a late miscarriage in August so I've started temping to check if I'm ovulating so that I know when I'm back on track. (My temp shot up this morning and now I don't know if I've o'd or if it was the wine last night!) I'm going to reflexology weekly too for 6-8 weeks to speed things up. Not sure if this is an option for you, acupuncture is really good at getting cycles back on track too...

Duggs that's interesting as I've been thinking that since I lost Joey whenever I see friends, the hairdresser, work colleagues etc they totally ignore the subject - I'd much rather people would say how sorry they are for what's happened. I know people worry about upsetting me though so I can see it must be hard to know how to act but not acknowledging it is a lot worse. Its totally different this time as everyone knew I was pregnant, but an early mc is so isolating and lonely when a lot of people don't even know you are pregnant.

Thanks everyone for all of the advice about the counsellor the other day, I didn't go back to her and I've booked to see a fertility counsellor at a local ivf clinic. Worth a try.

Hope the pupo ladies are doing ok and not mentalling too much (!).

V hard thinking I won't try until 2014 now but I've got some social stuff come up, wedding etc and its nice to be able to plan to go and have a drink and relax. Its a constant cycle of being pregnant and worried and then grieving and then trying again isn't it, your life feels on hold all of the time...

xx

VillageMum Sat 28-Sep-13 17:38:54

Thanks very much brownstag and mollieboo for the warm welcome.

brownstag I used to do BBT charting and my experience has always been the same as yours - a positive OPK result was always followed by ovulation. Louise also thought it would be really unusual to get a positive on the OPK and then not to ovulate. The blockage theory: apparently you can get scarring around the cervix after several ERPCs which can prevent the blood from AF from seeping out - most of it eventually gets reabsorbed, I'm told. (The scarring would need to be removed surgically during a hysteroscopy). I did have a scan during my last 'phantom' period and there were no obvious signs of any blood backed up in the uterus though, so I'm a bit stumped. I'm hoping against hope that my not bleeding is due to hormonal confusion in the second half of my cycle, rather than scarring. I also had an ovarian cyst and I believe that this can mess up cycles. Sigh. Just when I need things to be a bit simpler.

mollieboo I'm so very sorry to hear about your recent loss. Having a mc at any stage is always terrible but a late one must be even worse. I know just what you mean about people not acknowledging what's happened and how alienating that is. Maybe I just have unusually emotionally distant friends and family but that is sadly routine in my experience. Thanks so much for the acupuncture advice - have never tried it but am curious! Am also thinking of going back to BBT temping; I became quite fanatical about it in the past and stopped because it just made me too obsessive about ttc. Also a bit difficult at the mo as I have a toddler who regularly disrupts my sleep in the early hours so I find it difficult to do the whole 'temping at the same time every morning before you even move a muscle' bit! Enjoy having time off ttc and getting some quality of life back - 2014 isn't far away at all now.

VillageMum Mon 30-Sep-13 11:41:20

Just popping in to say hope everyone had a good weekend. Have been thinking a lot about first appointment with Mr S on Tuesday week and wondering what the next month will bring by way of answers, doubts, and pressure of hope. In bad moments I worry that he'll either be unable to help us, or that it's now too late for me... wish I'd found out about NK cells testing a year ago, before my last two mmcs... wish I were merely 42 again as when I had DD, rather than the old crone I am now... wish and wish and wish! On the other hand, late is better than never and in a few years' time DH and I will at least be able to look back and say that we did what we could, when we could. And (cue crazily optimistic cackling) I reckon I do still have about a year of fertility left. hmm

Sorry to witter on. Must be the effect of Monday morning. Wave to everyone!

brownstag Mon 30-Sep-13 15:24:33

Good luck for Tuesday, Village mum. Make sure you have pen and paper with you as I find the appointments with Mr S are like a whirlwind, over before you know it, so think carefully about everything you need to ask. Although you can always email Louise afterwards if you forget something. You will come away full of hope, I'm sure. I don't think Mr S has ever turned anyone away feeling he couldn't help. I feel like you, with a year of fertility remaining, but I am 42 now! I also wish I'd had a lap and dye two-and-a-half years ago when we started ttc again, rather than this January, as I got pregnant immediately afterwards (although miscarried a Down's pregnancy).

VillageMum Mon 30-Sep-13 21:08:39

Thanks for the tip brownstag - will go armed with a notebook! What you write about Mr S is encouraging. I'm at that low point where I just want someone to approach the problem in a can-do way, say 'this is what we're going to try now' and in so doing give me some hope - even if it doesn't work out in the long run. I'm weary of miscarrying but even more weary of the defeatist, 'don't-care and won't risk sticking my neck out' attitudes of the specialists I've seen. So bring it on, Mr S.

I'm very sorry to hear about your Down's miscarriage. Do I remember right - are you ttc your second pred baby under Mr S's care? Why do you feel you only have a year left? (To me 42 is no age!) Sorry to fire questions at you... I'm really interested that you got pregnant quickly after your lap-and-dye and that you see it as a positive procedure. Does it help with conception by clearing out all areas, so to speak? I may have to have one (or a saline scan, same sort of thing I think) for possible cervical blockage and have a horror of the whole thing - so what you say has actually given me a lift. Thank you smile

Lastly, a question to anyone who has taken supplements to improve egg quality. Before this last mmc in July I began to take Royal Jelly, COQ10 and Ovaboost as well as my usual prenatal. Maybe it was just coincidence but that time our baby at 7 weeks was a normal size for dates and hb was strong too (even more crushing, then, when all had stopped by the 9 week scan). My question is: has anyone ever tried DHEA? Did you do so on your own steam, or under medical supervision? Does Mr S have an opinion on it or on other egg-boosting supplements? Grateful for any feedback.

suemays Mon 30-Sep-13 22:00:27

I tried dhea and coq10 for a few months before this pregnancy so only time will tell if it has worked or not (I am 7 weeks now). That was on top of pregnacare, vitamin d3, low dose aspirin and agnus castus. Be careful with royal jelly as I have read that it can increase the killer cell count. I am in the very high category so don't take risks. Wheat and dairy can also aggravate killer cells/immune system. This was all down to my own research and not mr s though. Another thing I have been taking for a while are high grade fish oils as they are supposed to reduce an inflamed immune system.

The treatment plan I was on last summer with my pregnancy worked on mr s's plan with the extra supplements in that I got passed the miscarriage stage and the medical termination I had was nothing to do with the miscarriages. I took the agnus castus as my cycles went haywire for 7 months following giving birth/termination. I then had the amh test which said undectable egg reserve causing me to take the coq10 and dhea (and panic at the age of 41!) I had loads of advice from the ladies on here to take the micronised dhea from the USA. Its expensive but supposed to be better. I hope that helps!

I also had a hysteroscopy last April and then fell pregnant 2 weeks later so that might help you.

suemays Mon 30-Sep-13 22:03:45

Forgot to say mr s told me that killer cells attack the eggs which is why my amh is low - another problem to add to the mix!!

Bakingtins Tue 01-Oct-13 07:26:44

I had uterine biopsy with Prof S and as part of that they do a uterine scratch - she said anything which causes minor trauma to the uterus promotes a healing response which improves the subsequent linings and improves fertility for the next few months. We didn't TTC first cycle awaiting for results but have got a BFP first try. Time will tell if it has helped.
A positive way to get through the indignity of invasive investigations! Good luck for your appointment.

brownstag Tue 01-Oct-13 07:32:25

God, Sue, that's dreadful about NK cells and AMH! Is that while they are in the ovaries or just as they are released? And how are you, Sue?
To answer your question, Village, yes I am ttc no 2. I also took DHEA for 7 months before that last pregnancy (actually that wasn't my last; I conceived again the following month but it only lasted a week). I have low AMH, which is why I feel I have only a year left. Mr S is not a fan of DHEA but I am; not only because I got pregnant on it but because it makes you feel very good mentally, at least that was my experience. I don't think Mr S has given it a fair trial. But I had awful acne on it; and I mean awful. That's gone now but it took 4 months to get out of my system, and I've restarted DHEA, but at a very low dose.
I was told by another doctor that sometimes a lap and dye serves to relax a spasm in the tubes, enabling you to conceive. They certainly found no obvious anatomical reason for me not to conceive, so that may have been the case.

Bakingtins Tue 01-Oct-13 07:39:46

Can I ask those of you who have clexane as part of your protocol when you start taking it. Prof Q says from a scan showing pregnancy is intrauterine, which EPU won't do until 5+4. RMC unit locally initially said from BFP then back-tracked. I contacted Prof Q and she said come for a scan at 5 weeks, but I can't get up to Coventry (2hrs away) this week. My GP has prescribed the clexane, I can pick it up now if I want. Does anyone know what the risks would be of taking it if pregnancy was ectopic (no reason to suspect it is, I've not had one previously) ?

Mel3062 Tue 01-Oct-13 07:39:46

Sue I never knew it attacks eggs too sad and I was on royal jelly too so wonder if that's what caused my flare- who knows! It's a shame as I do feel hopeful with the hydroxy and dhea/ restravatol but I know I'd be silly to risk another try at the mo. baking tins congrats that happened to me to but sadly a chemical but I'm sure that's due to my cells at 48%!!
Good luck village mum mr s is optimistic so I'm sure you'll feel hopeful.
Mollie I can't try til jan either so we can be ttc buddies!
Well my 19 year old has gone to uni so I feel a Lomb is missing, it wasn't ment to work out like this sad I'm off with a nasty tummy bug too sad
Waves to all x

Mel3062 Tue 01-Oct-13 07:40:30

Limb not Lomb!

brownstag Tue 01-Oct-13 08:49:35

Mmmm, if NK cells attack the eggs while still in the ovaries, then that's an argument for taking things like hydroxy, as they are continuous, rather than just for the 10 days a month you get with pred.

brownstag Tue 01-Oct-13 08:50:16

Poor mel thanks

VillageMum Tue 01-Oct-13 11:06:04

Thanks so much for your answers everyone.

mel hi and really sorry to hear you're having empty nest pangs, my eldest is only 12 and I already dread the day when he'll be up and off sad

Sue that's really helpful. I'll give the royal jelly a miss from now on - had no idea it could affect NKC count. Is it just royal jelly that's a risk, or all bee products? I've also been taking bee propolis (as per horrendous long list below). Thanks too for your encouraging words about the hysteroscopy - makes me feel much more hopeful. Just wanted to say too how thrilled I am for you being pg again after your heartbreaking late loss and that I have absolutely everything crossed for you thanks

brownstag and sue, by the way, how much DHEA did you take?

brownstag I'm so sorry to hear about your low AMH. I've no idea what my ovarian reserve might be - all will be revealed in the next month I guess when I have the tests with Mr S. I could be running on empty already for all I know! hmm I like the idea of DHEA providing a mental boost! So if you're going to take a supplement that Mr S doesn't sanction, is it best just to be up front about it?

I've been swallowing a heap of supplements since my mmc in December - then had another mmc in July, but as I say, they may have helped egg quality as our embryo that time seemed a normal size for dates. Let me fess up to the full list of what I've been taking:

NHP Marilyn Glenville Fertility Support for Women multivitamin (changed to Pregnacare Plus on 26/9 on Louise's advice)
High grade Omega 3 1400mg (until 26/9 when I switched to the Pregnacare Plus omega supplement - but maybe the high grade ones are better??)
Aspirin 75 mg
Vitamin C 1000mg
Vitamin D3 50 mcg (since 26/9 on Louise's advice)
Vitamin B6 50mg
Alpha Lipoic Acid 100mg
COQ10 400mg
L-arginine 500mg
N-acetyl cysteine 600mg
Agnus Castus 800mg
Ovaboost
Folic acid 400mcg (making a total of 1000mcg – 400mcg in Pregnacare Plus and 200mcg in Ovaboost)
Royal Jelly 1000mg (will ditch this now!)
Bee Propolis 500mg (is this a risk too?)

Lunacy, isn't it? I got most of this list from a site called Angel Bump's Fertility Protocol at www.fertilityfriends.co.uk/forum/index.php?topic=226042.0 and checked it against the mc research at https://sites.google.com/site/miscarriageresearch/

The Ovaboost is already meant to improve egg quality; would it be safe to take in combination with DHEA I wonder? What really gets me is the DIY nature of all of this - the googling and guessing! Any advice hugely appreciated!

Wave to everyone else as I go quietly mad! confused

brownstag Tue 01-Oct-13 11:20:44

Yes, I asked Mr S about DHEA a year or so ago, he poo-pooed it, I took it anyway (75mg, the boils only started after 6 months, so hopefully you'll get pregnant before that and never need to find out; now I'm taking 10mg). When I got pregnant I told him I'd taken it. My NHS consultant was happy for me to take it. Maybe with so many of us getting pregnant on it Mr S might have changed his mind by now.
The only thing I'll say about that list is that although Mr S recommends aspirin while ttc, I've read on here that Prof Q says it can prevent implantation. That tallies with my experience of nothing happening for 2.5 years while taking it, but getting pregnant after stopping it (not sure why I did stop. Possibly because of my op and then I forgot to start again).
Also 600mg co q10 is recommended for egg quality.
I used to take 50mg B6 too for my short luteal phase, but it has got better lately without it (perhaps the co q10 giving my eggs more energy?) and 50mg is quite a lot to be taking long-term.
What is Ovoboost made of?
You can get your AMH done online by DuoFertility for £45, which is probably cheaper than Mr S would do it for.

Mel3062 Tue 01-Oct-13 12:08:44

Thanks village mum yes she's 19 so time is running out for a sibling sad why were you advised to stop Marilyn glenville vits? Interested as Ive been on those lately too :/

VillageMum Tue 01-Oct-13 12:41:12

Hi mel, I took the Marilyn Glenville vits (and DH the formula for men) before and during my successful pregnancy with DD in 2010-11 and swore by them. Took them again during last mmc and lost my faith a bit (though that's irrational as the causes of my mmcs I'm now beginning to believe could be NK cells - tests coming in October). I've simply switched to Pregnacare Plus as that's the brand Mr S recommends, not sure if it makes much of a difference. DH is still on the MG men's formula. By the way I'm 44 but going to give the sands of time a run for their money, wishing you every bit of luck too!

brownstag you are a mine of information, thanks so much! Re aspirin: there seem to be conflicting beliefs out there. The consultant I saw after my last mmc said to take it continuously, so I have (and was reassured when Louise said the same) but I do wonder. Have read that it can help ovarian function and that the increased blood flow and circulation while ttc are all good. But then have also read that it can prevent implantation, though I assumed that was just high dose aspirin and not 'baby aspirin'! One to think about...

Thanks for the tip about B6, DuoFertility and COQ10 quantity. There is COQ10 in Ovaboost but they don't say how much, so suspect it's very little.

Here is the Ovaboost blurb:
"This unique formulation is highlighted by a trio of ingredients, myo-inositol, folic acid, and melatonin that has been scientifically proven to improve egg quality. Of course, folic acid is already well-known for its ability to prevent neural tube defects, and it is recommended that all women of child-bearing age take in a sufficient amount of folic acid. But, recent research indicates that when folic acid is given in combination with two powerful antioxidants, myo-inositol and melatonin, egg quality is significantly improved in women undergoing IVF treatments. Recent research also confirms that myo-inositol works to improve insulin sensitivity, thereby helping to promote optimal ovarian function and cycle regularity in women with PCOS.

In addition, OvaBoost includes Coenzyme Q10 (CoQ10), which is also a powerful antioxidant. But, CoQ10 also plays an important role in energy production within egg cells. Once conception occurs, the amount of cell division that occurs to allow the egg to grown into an embryo and successfully implant into the wall of the uterus requires a tremendous amount of energy. CoQ10 works within the mitochondria (the energy powerhouse of the cell) of the egg cell to help ensure that energy production is optimal.

Finally, OvaBoost contains three additional antioxidant ingredients, Vitamin E, grapeseed extract and alpha lipoic acid, to help ensure your egg cells are adequately protected from the damaging effects of free radicals.

OvaBoost was designed specifically for trying-to-conceive women who are over the age of 30, and for women who have PCOS. However, OvaBoost is also intended to optimize egg quality and ovarian function in trying to conceive women of all ages.

The formulation for OvaBoost was developed on the basis of a large, and ever-growing, body of scientific literature that explains the underlying causes of poor egg quality and ovarian dysfunction, and points to effective and promising natural ingredients for improving egg quality and ovarian function. To see a sample of the scientific papers (all available in MEDLINE) that were reviewed and considered in the development of this product, click www.fairhavenhealth.com/ovaboost-popup.html"

Wonder if Mr S has any views on it?

Mel3062 Tue 01-Oct-13 12:56:32

Thanks umm interesting its a minefield what you should take/ not take. Not heard of ova boost either but I'm banned from taking anything at mo! I know what you mean about aspirin as I've taken it since 2010 on recommendation by rmc and then mr s but now prof quenby has told me to stop it so may as well give that a go! good luck to you too x

suemays Tue 01-Oct-13 12:58:21

I read that any kind of bee product can make nk cells worse so I would avoid them. I would also be careful about taking dhea with ova boost as one might cancel out the other. I went to zita west before I got pregnant this time as couldn't fall on the mr s steroid regime. Zita west told me to stop steroids and restart from bfp, swap low dose aspirin to clexane injections at bfp too as aspirin can effect uterus lining and cause implantation failure.

Zita west have also stopped amh testing and rely more on Fsh testing. I was told by them to have my testosterone tested at my gp and then again in 3 months to see if it was worth taking dhea. Can't remember what doseage I was taking so will check later. They were happy for me to take it though. I also had intrallipids when TTC the month before I got this bfp. Was also advised to stop agnus castus when taking letrozole. I didnt do the full superovulation, just took the letroz

Have a few twinges plus feeling very bloated so that I already look 4 months pregnant. Worrying constantly that things will go wrong plus I have had a bout of diarrhoea over the last day which hasn't helped as its one of the symptoms of an ectopic pregnancy.

suemays Tue 01-Oct-13 12:59:40

I read that any kind of bee product can make nk cells worse so I would avoid them. I would also be careful about taking dhea with ova boost as one might cancel out the other. I went to zita west before I got pregnant this time as couldn't fall on the mr s steroid regime. Zita west told me to stop steroids and restart from bfp, swap low dose aspirin to clexane injections at bfp too as aspirin can effect uterus lining and cause implantation failure.

Zita west have also stopped amh testing and rely more on Fsh testing. I was told by them to have my testosterone tested at my gp and then again in 3 months to see if it was worth taking dhea. Can't remember what doseage I was taking so will check later. They were happy for me to take it though. I also had intrallipids when TTC the month before I got this bfp. Was also advised to stop agnus castus when taking letrozole. I didnt do the full superovulation, just took the letrozole without any scans or hcg shot and dtd every day for over 10 days.

Have a few twinges plus feeling very bloated so that I already look 4 months pregnant. Worrying constantly that things will go wrong plus I have had a bout of diarrhoea over the last day which hasn't helped as its one of the symptoms of an ectopic pregnancy.

Arianrhod Tue 01-Oct-13 13:03:53

I won't get started on the whole supplement debate, the ladies on here know I'm on shedloads, all very carefully researched, and I've said loads on them all already so I won't bore you all again! smile , but I would just add in my tuppence worth about myo-inositol/melatonin - be careful with taking this, as I found quite a few posts that indicate this combination can interfere with ovulation. It's the melatonin that's the issue, but of course people recommend taking melatonin to boost myo-inositol.

YMMV of course, but that's why I never took the melatonin that ordered.

Ditto to sue's comment about royal jelly/bee propolis - this can boost NK cells/your immune system, as I noticed when I used to take it - my eczema/psoriasis flared up more when I was taking it.

/waves to everyone smile

Arianrhod Tue 01-Oct-13 13:06:24

Oh, and agnus castus interferes with letrozole, hence why you were advised to stop taking AC when you were on letrozole sue - AC has the complete opposite effect to letrozole, thus rendering it less effective. I swear by agnus castus, I'm not sure if that's why my cycles always return straight back to normal after a miscarriage/ERPC, but I believe it helps.

village, forgot to say ... you're a spring chicken, I'm 45 .. smile Although doing DE IVF now, but that's mostly because of the DQa issue I have with my partner than anything else.

brownstag Tue 01-Oct-13 13:11:28

The Ovaboost sounds very interesting. Do they reference this supposedly scientific proven claim?
But I'll never take alpha-lipoic acid again after a nasty experience years ago when I was taking antidepressants and started taking a formula called Lipocarn (acetyl l-carnitine and alpha lipoic acid) which was to improve memory. Bum trip! The two interreacted and I thought I was going mad. I may have had serotonin syndrome as the Lipocarn increases serotonin and so do antidepressants. As I lay in bed that night I could only think in mathematical concepts and geometric shapes instead of words. I also felt as if my body was rolling over continuously even though I was lying flat. I rang NHS Direct in the middle of the night and I couldn't believe that real words were coming out of my mouth instead of all the rubbish that was going on my head. It took 3 days to go back to normal completely. Never again!
There's loads of bugs about at the moment (as Mel can tell you), Sue, so I'm sure it's something like that, not ectopic. I've never heard that could be a symptom. Hope you feel better soon.

brownstag Tue 01-Oct-13 13:14:22

Ari, my last letrozole cycle I forgot to stop agnus castus and I only produced 1 egg, so that proves your point. An expensive mistake to make. I just assumed at the time it was my increasing resistance to stimulation. Sigh.

brownstag Tue 01-Oct-13 13:17:01

Sorry, Village, you already produced the evidence.

Arianrhod Tue 01-Oct-13 14:09:16

Yes, I hate to admit it but I had done 5 cycles of superov (with a miscarriage on my first SO cycle) before finding out that AC interferes with Letrozole. What a waste of money, time and valuable eggs sad

Arianrhod Tue 01-Oct-13 14:11:27

Ah, forgot to say sue, if it was ectopic you would know about it by 7 weeks, or so my EPU told me during my recent protracted nightmare. And brown is absolutely spot-on, there are a whole host of tummy bugs going round at the moment, most of the girls in my DD's class (including my DD) have tummy problems right now. Hope it goes soon, last thing you need is a tummy upset!

VillageMum Tue 01-Oct-13 14:40:56

sue, try not to worry about the diarrhoea, as brownstag says, lots of bugs around - and it could also just be a result of hormonal balance changing in pg (I've had it in several pgs myself as the result just of being pg - with my DS it was continuous for 9 months; my GP got fed up with me phoning in about it.) Are you having a scan soon?

Cripes Arianrhod - never thought about the bee product/ eczema link before. Developed eczema for the first time in my life during my first mmc back in 2008 and it's never gone away completely. Since then it tends to flare up in the second half of my cycle but it has got worse ever since I've been taking the bee products. Into the bin they go!! And thanks for calling me a spring chicken, that's made my day. smile Best of luck with the DE IVF, how incredibly exciting! Where are you having it done if you don't mind me asking?

That's terrible and fascinating, brownstag. By the way the Ovaboost blurb does warn you not to use the product if you are taking an antidepressant as it's been known to enhance the effects of these meds - leading to serotonin syndrome, presumably!

mel, yes, a bloody minefield! So much seems to be trial and error and down to the way the individual body works. confused

VillageMum Tue 01-Oct-13 14:47:49

No probs brownstag. I'm not sure how much melatonin, COQ10, myo-inositol or alpha lip acid there is in Ovaboost as they're very cagey about their ingredient quantities. They declare 100iu of Vitamin E and 200mcg of folic acid, but the other ingredients are all lumped together in a 'proprietary blend' of which the aggregate quantity is 2215mg, so it's anybody's guess!

Arianrhod Tue 01-Oct-13 15:10:15

village Eczema is classic auto-immune reaction - I gauge the current state of my rampant NK cells by my psoriasis and eczema reaction at the time! I wish DE IVF was exciting but in truth all it is is very bl**dy expensive, and with my immune issues, even DE doesn't work, we're now moving onto DD to completely remove the problem of our DQa incompatibility. We're cycling at Serum in Athens, and I have to say they're absolutely fabulous (just my opinion).

By the way, not to scare anyone but watch out for vitamin E supplementation .. it's also known to boost the immune system. It's a feckin minefield out there, I can tell you. It's supposed to help with lining issues, but at the same time if it boosts your immune system then it's a double-edged sword. Mine went firmly but reluctantly in the bin, just using l-arginine for lining booster now.

By the way village Mr S is pretty firmly against DHEA ... I just didn't tell him when I was taking it. But I would recommend you get your blood tested (DHEA and DHEA-S levels) before starting it and keep it monitored while using it, if you are going to, as sue also said. If your levels of testosterone go too high, as can happen if your levels of DHEA are good enough to start with, that can have an adverse effect on ovulation and/or general egg quality/quantity, apparently.

brownstag Tue 01-Oct-13 16:00:11

So are you going for it again, Ari? Have you persuaded your OH?

Arianrhod Tue 01-Oct-13 16:25:41

Hopefully brown, if I can find somewhere to get the money from. Well tbh we didn't talk about it, I just told him I was investigating options to get the money "for our next Serum adventure". He didn't comment!

LunaGL Tue 01-Oct-13 16:46:26

Hi All have been reading the last few pages of comments as have been away with work. Good grief its easy to go bonkers with what to and not to take. Am very interested in the DHEA though and wonder where I could get tested for my levels if Mr S isn't a fan? At the moment I am simply taking Pregnacare plus together with Omega 3. Should I be on more and if so what? There have been so many suggestions on these threads that I'm really confused. Should I just wait until after my appointment with Mr S next week and see what he recommends?
Another question is that I only get a half an hour appointment with Mr S which seems like nothing. How will he get my history, recommend a plan etc in such a short space of time? What has been other people's experience? Was thinking of sending his office an email with details but not sure if that is simply overkill....

brownstag Tue 01-Oct-13 19:06:23

Great, Ari!
Luna, a quick reply, but it can't hurt to email your details. I would do so. And I've seen a salivary DHEA test online for about £40. I researched these tests a bit as I was a bit dubious and it seems sex steroids can be tested quite reliably with saliva. Of course you can get blood tests online for a bit more. They send you a kit and you go to the docs and get it taken, and send it off. That's how I got my AMH done.

VillageMum Tue 01-Oct-13 21:19:50

Thanks for all this valuable info everyone!!

Arianrhod I really appreciate the tip about melatonin potentially messing up cycles and Vit E raising NK cell levels. Have read up on both this evening and 'tis so. Thanks too for the advice re having DHEA testing first, rather than just merrily glugging this supplement. Would you mind telling me what your supplement list was? I've looked back through past threads but my goodness there are thousands of messages out there and I'm getting lost! I'm sure the other ladies on here won't mind if you reprint it, if that's ok with you... Thanks! smile

Based on the all the fascinating info I've gleaned from all of you just in the last 24 hours I've now decided (a) to bin the bee products, (b) to up COQ10 to 600mg and (b) to switch from Ovaboost (which has high Vit E levels and contains melatonin too) to a plain supplement of 4g myo-inositol per day. Have been reading that 4g of myo-i taken with 400mcg of folic acid is the recommended dose to improve egg quality. Some fertility sites recommend taking it with the melatonin, some without - so can clearly be taken without. Whether it works or not - who knows?

Luna that 30 min appointment on the 8th does seem short, doesn't it? But I figure it's just to get the basic history and that the programme will follow once the test results are in - though in your case of course you have pretty comprehensive results already from earlier testing, so you may be able to get more out of him on the day.

brownstag thanks for the online test info.

And now a confession: tonight DH was late home from work, DS had tons of history homework as usual on a Tuesday night which he couldn't finish on his own, DD was running around like a batlet out of hell, flinging toys and juice around the living room while I tried to answer questions about Henry II and failing to get dinner together and I suddenly thought WHAT AM I DOING TRYING TO HAVE ANOTHER? Am I mad? confused Felt like cancelling that Shehata appointment and running for the hills! Better go to bed - feel all in and rather down again. sad

VillageMum Tue 01-Oct-13 21:27:29

Really am going to bed but one last mad question to all before I do, and that is: should DH also stop taking the bee supplements? He's been guzzling the royal jelly and bee propolis too, bless him, on my instructions. Surely his taking them wouldn't have a negative effect on any resulting pregnancy - or would it? Argh, enough for one night! sad sad

Arianrhod Tue 01-Oct-13 21:51:08

Will reply properly tomorrow as I'm on the ipad right now and I'm rubbish at typing on here but just wanted to say village your DH is fine in the bee products, it can't affect your Immunes if it's him that's taking it smile.

One quickie to everyone taking resveratrol as I do, something I found out today that I didn't know. Apparently it has a half-life of about 9 hours (I can quote the research articles I found tomorrow if anyone wants to know) which is why it's important to take them twice a day. I have always taken 2x200mg in the morning with all my other supplements, basically because I dislike taking too many in the evening and I already take a few, and wondered why most places say to take twice a day. Well, now I know, so my protocol has to change a bit. Darn.

Arianrhod Tue 01-Oct-13 21:52:24

ON the bee products, not in them!! Unless of course he dives head first into a jar of royal jelly ;)

VillageMum Tue 01-Oct-13 23:39:15

Tried to go to bed and failed! Meh.

Thanks Ari re bee product answer! Must admit I had a nagging vision of his bee-product-laden sperm wreaking havoc on my now bee-free immune system shock

One last question to all re COQ10: what form do you take, ubiquinone or ubiquinol? And where do you buy it from? Thanks and waves to everyone!

VillageMum Tue 01-Oct-13 23:51:08

And while I'm at it, if anyone has taken myo-Inositol, which brand and where from too, please? Millions of bottles out there...

brownstag Wed 02-Oct-13 08:06:10

I used to take Healthspan 200mg veggie caps which are ubiquinone. Their products are first-rate but not necessarily the cheapest. They also do ubiquinol but more expensive. Now I've just ordered some Doctor's Best, 600mg, veggie caps as they're much better value. Not ubiquinol but with some extract that makes them more easily absorbed.
I will now also be taking some myo-inositol on recommendation!

Arianrhod Wed 02-Oct-13 08:45:03

Morning all ... village I take Simply Supplements Co-Q10, I was taking 2 x 300mg when I was working on egg quality but now I dropped it back to 1 x 300mg. These are ubiquinone - I know ubiquinol is supposed to be better, but given the cost of these darn things - and the cost of everything else I take! - I had to draw the line somewhere! If you want to see them they're at http://www.simplysupplements.net/product/504/co-enzyme-q10-300mg/?gclid=CJ7Tm6XS97kCFbMbtAodbUcAEg .

Luna Trust me, Mr S can get through quite a lot in half an hour! smile I emailed through a detailed list of my miscarriage, AF cycle and medical history before I went for my first appt, but to be honest I don't think he read it before the actual appt. I'd still do it anyway, just in case! Also bear in mind that Mr S doesn't seem to believe in supplements outside of his own regime and from what I remember that's basically a pre-conception multivit, baby aspirin, he told me to take Omega 3 but I believe he doesn't tell everyone this, and vit D3. I think that's all it was, but no doubt the other ladies who've been to see him more recently than I will correct me/add to the list if I've missed anything!

village I'll PM you later with my list of supplements if you really want to see it, don't want to bore everyone on here with it all! smile

VillageMum Wed 02-Oct-13 11:32:17

Ari thanks for the supplement website link - looks like a good site with good prices. Holland & Barrett have made a fortune out of me! Really grateful if you could send me your list (is PM another way of messaging on Mumsnet? I'm a bit new to all this!) smile

Luna when I booked in with the clinic I asked Louise in advance which basic supplements Dr S would recommend and she said: Pregnacare Plus with the omega capsule, Vit D 25mcg (x2 daily), and 75mg aspirin.

I've sort of realised that Mr S doesn't believe in other supplements, and seems not to feel that the man needs to take anything at all - when I asked Louise if DH should be on the Wellman since she was recommending Pregnacare for me, she was amused!

brownstag Wed 02-Oct-13 12:02:31

Yes, that is odd, isn't it, Village? I recently bought my DH some l-arginine and every single time he took it, he was plagued by inconvenient nocturnal tumescence, so it was like Viagra in supplement form. Which just shows how men can respond well to these things, and of course more quickly than the effect on eggs.

VillageMum Wed 02-Oct-13 14:36:43

Brownstag heheheh, my DH takes l-arginine too (the Marilyn Glenville Fertility Support male formula has a pretty hefty dose at 300mg, Wellman only has 10mg!) but royal jelly has the biggest psychosomatic effect of all on him - has practically convinced him he's superman or maybe superdrone (reminds me of that short story by Roald Dahl grin).

I was interested to read a few posts back - I think it was sue who mentioned it - that dairy and wheat should be avoided if you have immune issues. Dairy, dairy, wheat, wheat, meat and more dairy pretty much describes my diet. Can anyone recommend a book on what to eat? I'm picturing a future of boiled rice and avocado but it can't be that bleak? hmm

Hope everyone else is well smile

LunaGL Wed 02-Oct-13 16:36:04

Thanks for the recommendations Brownstag Ari and Village. I spoke to Louise today and she gave me a list of the exact info they want be to take.
Village happy to message you the details if you want it for your appointment.
Re vitamins for DH, he is on some Zita West vitamins called Vitamen and Vitamen Boost and they have had an AMAZING result. His sperm count (are we allowed to type the word wink ) and mobility more than doubled on these vitamins and the tests that he had in August showed that everything from his perspective is all in the normal range when originally everything was very low. On the vitamins we managed to get BFP 3 times last year but then he stopped them unbeknownst to me angry which probably accounts for our dry spell this year. He started taking them again in May and I had a BFP in August so they definitely work for him. Now we just need to get me sorted out and we might finally have the family we are so desperate for smile

suemays Wed 02-Oct-13 17:12:10

village I drink almond or rice milk (avoid soya as it can affect the hormones required for pregnancy). I also buy wheat free bread from Sainsburys in the free from section. It actually tastes quite like normal bread so you don't feel like you are depriving yourself. I am not 100% wheat/dairy free but have made those alternatives. I still eat and drink it occasionally if out for lunch etc or choose a salad. I think its more advice to keep an eye on how much you are eating rather than get fanatical!
Thanks for the input about my bad stomach. It has put my mind at ease that's it's not an ectopic. I wonder if the bad tummy is down to me eating lots of wheat and dairy at the weekend as we were in Scotland for a funeral. It has made me feel wiped out today so still not sure if its down to the pregnancy hormones or not.

My friends DH took the zita west tablets for a while and had acupuncture and his sperm count increased - they have twins through ivf now. I have had my DH on wellman for the last 3 years plus he sprinkles omega seeds from holland and barrett on his cereal. Since doing that his hair has got thicker and started to regrow on his receding hairline! Even his friends have noticed so it must be having some good effect. When we tried iui, he was almost congratulated on his sperm, it was quite embarrassing. I am sure its down to the supplements.

suemays Wed 02-Oct-13 17:15:54

I got my coq10 from Costco as it was the cheapest I could find. I buy the high grade fish oils from natures best.

Arianrhod Wed 02-Oct-13 17:32:56

I'm with you on that sue, I'm avoiding wheat/gluten at the moment but don't beat myself if I have the occasional gluten. OH keeps buying my fav chelsea-bun-type-things, even when he knows I'm trying to avoid gluten. He means well, but ... hmm .

sue, a thought - are you taking extra progesterone? It can cause diarrhoea (as well as constipation, go figure!), just wondered if that might be the case for you perhaps.

lol to the l-arginine effect for the fellas - I understand that's quite a common side effect. My acupuncturist told me her DH takes it as something to help his stomach, apparently it does that too.

village I'd recommend the Genius range if you want to try out gluten free. I quite like it. I'm actually going to attempt to make a gluten-free loaf in my breadmaker at the weekend, courtesy of a recipe on the Dove website. I'll report back on how it goes smile

Incidentally Dr Braverman encourages his immune clients to go gluten free (not sure about the dairy free too, but I know it can cause immune issues in some people) and since he is God as far as I'm concerned on the immunes front, he must have a good reason.

On the same lines, I'm just finishing a 3-day juice detox (courtesy of Jason Vale, aka the Juicemaster) as I thought I really need to clean my system out, if I do have gluten intolerance issues as I suspect then I thought a 3-day detox would be a good idea. Oddly enough I haven't really felt hungry until this afternoon, and even that is ok, I can tolerate it.

village PM = private message smile Which will probably be tomorrow now, as I've been at paediatric A&E all afternoon with DD being tested for what I suspected was an immune issue (!!), and it turns out it is. Hope to god I haven't passed my dodgy immune system on to her sad

/waves to everyone

Arianrhod Wed 02-Oct-13 17:34:04

That was DD being tested, not me, since I know already about my feckin' immune system! smile

suemays Wed 02-Oct-13 18:27:31

ari yes I am taking progesterone but this never happened with my last pregnancy. I just hope it goes soon!
Thanks for the info on vit e - I have been taking that twice a day so will stop now. I just hope it hasn't increased my nk levels and doomed this pregnancy already.

VillageMum Wed 02-Oct-13 19:02:35

Luna thanks so much - I'd love the list if you could post it here or... PM me? Though I don't know how to PM... Goodness me, I'm going to check out the ingredients of those Zita West vits! Holding thumbs for you as you start on Mr S's programme, I so hope this is the answer you've been looking for - and trust for both of us it will be! smile

Ari how does this PMing work? Is there a special button? confused Excuse my ignorance! Very sorry to hear about your DD, hope all is ok with her.

sue and ari thanks for the dietary info, that's really helpful and doesn't sound at all bad-tasting. sue, glad you're feeling a bit better about your upset stomach. It does sound like a reaction to hormones or the unaccustomed wheat and dairy you've been having, as you say, and nothing more sinister than that. How far along are you now?

Hi to everyone!

Arianrhod Wed 02-Oct-13 19:08:48

village just quickly as I'm supposed to be doing bath-bedtime routine .. when you look at the page of messages here on the thread, look in the blue bar where people's names (nicknames) are with the date and time of the message, and you'll see an "Add message". That enables you to type a private message just to that person.

brownstag Wed 02-Oct-13 20:00:17

Mr S had me on a gluten-free diet for my whole pregnancy with my DS because my mum has coeliac disease; even though I tested negative for it, and also recently when I was tested for it again. That Genius range and virtually all gluten-free products have eggs in them to bind them together, and as I'm vegan, I can't have them. The only suitable bread I found smelled like a sweaty sock and was about £3 for 2 stale mouthfuls. Misery. I lived off rice for my pregnancy and then read afterwards that you shouldn't eat too much rice in pregnancy because it can contain dangerous levels of arsenic, which among things can cause low birth weight (DS was 6lb). Too much knowledge is a dangerous thing and all that ...
But now I love off bread. Maybe I ought to cut it out for a bit. And also I drink gallons of soya, and never got on with any milk alternatives until I came across Kara coconut milk. Delicious. Going to embark on the 5 2 diet to shift some of this post-pregnancy, post-pred lard.

brownstag Wed 02-Oct-13 20:05:49

What is your daughter's immune problem, Ari? Is it something that can be easily treated? Sadly autoimmune conditions do seem to be familial, even if it's not the same condition. Mr S is always interested in the whole family's immune issues; my mum has coeliac and my dad has arthritis and Reiter's syndrome, all autoimmune diseases, and I have endometriosis, another.

Arianrhod Wed 02-Oct-13 21:56:51

Turns out she has HSP vasiculiitis brown, which is where basically the immune system attacks the body's red blood cells. There is no treatment, apparently it resolves itself eventually but in something like 50% of cases the kidneys are affected, sometimes very seriously so, so it has to be very carefully monitored. sad

VillageMum Wed 02-Oct-13 23:30:18

Ari very sorry to hear about your DD's diagnosis, must be a hugely stressful thing to cope with. Thanks for the PM info. So when you type a PM using 'Add Message', does it only appear on that person's page? Hope I haven't been doing this to any of you inadvertently, have been fairly reckless with buttons!

brownstag that's interesting about family auto-immune 'clusters' and has got me thinking - nothing major in ours that I know of, but my dad and sister both have a million allergies and since my first mmc I've developed fairly bad eczema. Wonder if there's a connection there somewhere.

Sue if you can, don't worry about the Vit E. Seems that these studies were conducted on mice and the ratio of Vit E to body weight would be far in excess of anything we've been taking. If you're on steroids they will be doing their work smile

bakingtins how are you doing?

brownstag Thu 03-Oct-13 10:41:17

Village, on the top right of your page is My MumsNet, with a letter icon, where you can see whether you have any messages. It's a bit like email. Only that recipient can read the message.
Glad to hear it will right itself, Ari, but you can't help worrying. No parent wants an open-ended medical diagnosis where things need monitoring. You just want it sorted once and for all.
So when is what happening with your treatment, *Ari8?

Arianrhod Thu 03-Oct-13 10:51:02

Oh whoops, sorry village I gave you duff information. You click on "Message poster" to send a private message, not "Add Message". Just goes to show I really shouldn't post after a day worrying about medical problems!!! Sorry blush

Well, it will right itself brown, IF it doesn't damage her kidneys or bowels .. which happens apparently in 50% of cases! sad So we now have to monitor her like a hawk to watch for any signs of extra problems, and she has to attend numerous GP/clinic appointments so they can monitor things too. I am worried sick, I don't mind admitting. sad

With my treatment ... well now I'm in a quandry. Do I go ahead with a cycle in November, with all this with my DD hanging over my head, or wait until next year when hopefully it should have cleared up, I just don't know. I don't want to wait, I'm not getting any younger - 46 in January! - but on the other hand this is going to be a lot of stress and a lot of medical to-ing and fro-ing. Not to mention I will have to go to Greece for at least a couple of days, and I had planned to take DD with me - but can I do this, if there's a worry over her health - what if something happens while we're out there? I just don't know what to do for the best.

brownstag Thu 03-Oct-13 11:37:36

Well, you'd be covered by a European Health Insurance Card which includes Greece, and that includes pre-existing medical conditions, plus your own travel insurance of course. That doesn't stop it all being a major hassle and anxiety.
On the other hand, if you're using donor eggs, your age is not so important as if you were using your own from the point of view of conceiving successfully. That's the limiting factor usually. But of course it matters that you'll be an even older mother as far as the pregnancy is concerned and then an even older mother of the child born.
Your decision of course but on balance I think I'd go for it asap, maybe not taking DD. What are her symptoms and what led to her diagnosis?

VillageMum Thu 03-Oct-13 12:02:32

Thanks ari and brownstag for the PM tutorial, all makes sense now!

Luna I'd love the list of info needed for Mr S if you could send it - thank you! smile

ari treatment in November sounds like a lot of stress to be going through when you're already worrying about DD. Would waiting a couple of months make much of a difference? By the new year things could be resolving themselves, or you might have worked out a coping strategy and be feeling in a better frame of mind? Tough decision to make and I really feel for you x

Right, sitting here waiting to see how my 'phantom' cycles are going to behave this month and if AF is finally going to arrive tomorrow, or if I'll just have the excruciating cyclical pains without any bleeding which I've had for the last two months. If there's nowt again this time then I'll seriously suspect I have scarring thanks to my July ERPC, which is stopping things from coming out. Lovely. sad

LunaGL Thu 03-Oct-13 12:16:05

Ari you have a serious amount of pressure on your shoulders. Have you spoken to your OH to share some of the decision making burden? I agree with Brown regarding starting sooner rather than later, but that should only be with the right support in place to enable you to concentrate on the next cycle etc and not have to constantly worry about your DD (which would be understandable but just add extra pressure)

Arianrhod Thu 03-Oct-13 13:01:47

Thanks ladies - the stress of it isn't what's worrying me, to be honest, it's either taking her with me and then panicking about if she develops symptoms of kidney problems in the couple of days we're out there - I certainly don't want to be trying to explain what she has to Greek doctors, as it's relatively rare! - or the worry of leaving her at home for a couple of days (which she absolutely doesn't want me to do anyway, she won't be apart from me for more than a few hours) and leaving OH in charge. He's great, but he's not me, if you know what I mean?!

luna Ah if only I could share this with OH - but since he almost certainly doesn't want us to do another IVF cycle anyway, he would definitely say we don't do a cycle in November. Or ever, I suspect, if he had his way. So it's no good asking him!

brown She has had a bad tummy ache constantly for a week, which is unlike her, and also started developing red spots on her bottom and legs which don't blanch - both classic symptoms of this syndrome apparently. After a few more spots appeared on her bottom and started showing up on her legs I took her to the doc tomorrow, and we were told to go straight to paediatric A&E, where after testing (and being poked and prodded by 4 different medical staff!) they confirmed what she has.

Sorry, I know this is deviating hugely from the purpose of the thread!

village I have to say, I ended up with quite bad scarring after having had two ERPCs, as discovered by my hysto in Athens in April this year. Apparently it's very common, and can affect your AF and how it presents. Can you get this checked out?

Arianrhod Thu 03-Oct-13 13:04:08

Of course I didn't take her to the doc tomorrow, god knows why I typed that! I don't have a Tardis at my disposal, only wish I did! smile I took her to the doc yesterday ... doh!

VillageMum Thu 03-Oct-13 17:45:11

Ari thanks for your concern even in the middle of all your own problems. My womb looked a-ok in recent scans since the ERPC but I'm worried there may be a slight lesion or two blocking the cervix which wouldn't show up on ultrasound - Louise said they'd do a saline scan for me if AF doesn't arrive now.

luna thanks so much again for the list!

Arianrhod Fri 04-Oct-13 11:28:01

village I sent you my mammoth list of supplements, hope it doesn't send you to sleep smile

suemays Fri 04-Oct-13 13:36:41

Ari I think you have to put DD first and wait to go back to Athens. As someone else said it's not like there is so much of a time limit with using donor eggs. The stress of it all wouldnt be good for you to try and get pregnant now anyway.

Arianrhod Fri 04-Oct-13 14:18:22

Yes sue, that's what I've decided. I emailed Penny to let her know what's happened - she said I could go over for just the ET without the aquascan/scratch so I could fly there and back in a day as I did last time, if I wanted to, but her opinion was that I should concentrate on DD and we'll sort out what to do IVF-wise when DD is better. Which is what I'd decided too. I'd never forgive myself if she needed me and I was over in Athens, even just for the day.

So I shall lurk for the next few months, and cheer on all your good news!

VillageMum Fri 04-Oct-13 16:51:12

Ari thanks so much for the list! I'm interested to see that you take methylfolate - I'm heterozygous for MTHFRC677T but the specialist I saw last month said this wasn't significant. Wonder if Mr S will think it's relevant. Glad you've arrived at a decision about the next few months that you're comfortable with, sounds like the right one! x

sue hope you're doing well smile

I'm having sensational AF-without-any-bleeding pains again today. Hard not to believe that I have a cervical blockage sad. Everything about this last cycle has again presented normally - positive OPK mid-month followed by ovulation twinges on day 15, two-week luteal phase, pre-period hormonal headache yesterday, cramping today... but no blood. This is the THIRD cycle on the trot now in which I've had this. I'm really hacked off with my GP and the specialist I saw last month, both of whom dismissed the possibility of scarring. Louise is the only person so far who has suggested that a saline scan might be necessary to check for this. Roll on Mr S appointment next week angry.

teamdozie Fri 04-Oct-13 17:29:37

Hi everyone

i just wanted to say thank you all for your support, ive had a few days away to get my head straight..
DH and i have sorted things out I'm pleased to say..

Well after all the stress and worry and about to start the supper ovulation treatment this month i got a BFP today..

I cant believe it since i tested negative and have been spotting.. DH wanted me to test today.. (good job i did otherwise id be forking out on meds i dont need)

Im in utter shock..
Im going for my intralipids on monday and have started all other meds too.. so here we go taking one day at a time..

Arianrhod Fri 04-Oct-13 19:19:46

village I hate to say this but worrying about scarring I had a hysto under Mr S (wasn't him that actually did the op) and they said there was no scarring at all. Then when I had another hysto in Athens this April they found lots .. and having seen the DVD of the op (yuck!) I got to see it all for myself (and saw it being cut out - really yuck!). I have since found out that clinics here in the UK frequently miss this scarring ..

team Cautious woohoo for your BFP, and fingers crossed it all goes well!

Arianrhod Fri 04-Oct-13 19:21:47

Oh and village Mr S doesn't believe methylfolate is necessary for MTHFR but then blood clotting disorders aren't his area of speciality, to be fair. He thinks that all is needed to treat MTHFR is aspirin and folic acid.

duggs1976 Fri 04-Oct-13 22:30:28

Quick Q for pebbles (if she is here?) and breezy do you know how much you spent on your ivf rounds you've just has at new life clinic and the lister? Sorry if you don't want to discuss... Just wondering

Bakingtins Sat 05-Oct-13 04:38:20

teamdozie congratulations! Everything crossed for you.

Ari sorry to hear about your DD, must be v worried. I hope you are all feeling well looked after in the midst of it.

Village I'm ok, thanks for asking. Massive insomnia from the pred (hence up at 4.30) and understandably anxious, but trying to be zen about what I can't change. Scan on Tuesday...
Phantom AF sounds rubbish - hope Mr S can shed some light.

Buzzybee123 Sat 05-Oct-13 12:07:00

team congrats, I'm really pleased for you smile

Waves to everyone else, will try and catch up soon

VillageMum Sat 05-Oct-13 12:58:26

teamdozie that's fantastic news! Thrilled for you!

bakingtins really sorry to hear about the insomnia, have heard about that as a side effect, not helpful in early pregnancy when you're already feeling tired... Will be thinking of you on Tuesday. How far along will you be by then? Am keeping everything crossed for you x

ari Grrr that's not encouraging about UK clinics missing scarring. Well, I'm hoping that the sheer physical action of inserting a hysteroscope through my cervix (or pumping saline solution through it!) will unblock something. At this stage I'd be thankful just to be able to menstruate again. Who did your hysto? Was it Mr Gafar at New Life? And if you don't mind me asking, did your uterus present as normal-looking on ultrasounds beforehand? Everyone so far is insisting that the problem can't be scarring - they all keep pointing to the wonderful uniformity and regularity of my womb on ultrasound... but I know that plain ultrasound can't pick up scarring. So I'm curious to know what your experience was if that's OK with you... Off I go to take more paracetamol sad

Arianrhod Sat 05-Oct-13 14:27:10

village It was at New Life, yes, on the instruction of Mr S but I've no idea who actually did it I'm afraid. And yes, my uterus always appeared normal on all ultrasounds.

teamdozie Sat 05-Oct-13 15:00:32

Ari thank you very much.. I have read some of your post and wanted to say sorry to hear about your DD. I read that you are going to Athens? Is that for any particular reason? Pardon my nosiness im Greek myself..

Baking Thank you and congratulations to you too.. im not sure ive said it before.. How far along are you? First day on steroids yesterday and like you i was up at 12.30 and awake till 4. So needless to say today im exhausted. My first scan isnt for another two weeks.. i feel really different about this one.. good different. Worried but nothing like i have been in the past..

buzzy Thank you .. hope you are ok?

Thank you village its still not sunk in..

xx

VillageMum Sat 05-Oct-13 16:39:09

Ari hmmm... let's hope that the procedure works for me. Have read that the saline scan can detect over 90% of abnormalities.
Hope your DD is doing OK today?

Wonder if anyone else had had experience of hysteroscopy or saline sonohysterography (saline scan) at New Life or while under Mr S's care? Sue you mentioned you'd had a hysteroscopy just before falling pregnant - was that done at New Life? Curious to know what has or hasn't worked for you all.

team hope you manage to put your feet up for a few minutes this weekend.

Waves to everyone smile

Bakingtins Sat 05-Oct-13 18:24:10