Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Hey @Chickjen! Yes it can be a shock when those results first come through and you're both looking at those graphs wondering "just how bad is this for us?"

My DH had 23% high damage and 37% low damage. He was terribly upset initially and really blamed himself for not taking care of his health more. It was kind of heartbreaking. He had consultations with the two recommended consultants which was actually very helpful for getting a more balanced picture of the situation. The scan detected a couple of small varicocele on one side (small varicose veins in the testes which can cause a build up of heat and lead to oxidative damage) but the consultant advised him to see how he did just on the Condensyl and lifestyle changes before considering an operation. I think the consultants were also very useful in outlining what is actually known and what is not about how any interventions affect live births.

Also - upside alert for your DH - the male fertility specialist told him regular ejaculation every 24-48 hrs is one of the best things you can do for sperm quality. Who doesn't like a prescription like that?

There's also an informative and lighthearted website called don'tcookyourballs.com that has useful lifestyle info.

I think it's really tricky for men because they are just not used to having such invasive and personal investigations. We women have to deal with it from such an early age what with periods, smears etc that I think the idea of someone having a good poke around our bits is kind of parr for the course. When he started expressing his fears about having someone look at his balls I was a bit like "are you **ing kidding me? Do you know the amount of apparatus I've had up my Mary in my time?!" I'm sure you'll choose your words more sensitively. But he went with the appointments and they were absolutely fine.

Let me know how you get on. It is upsetting to start with but once you're taking proactive measures it will feel better. I know it looks terrible on paper but bear in mind that my DH's High damage score was 0% on second testing - wiped out. There's lots of hope here.

xx

Thank you @Belarita and @Pop1234 it really does help to hear from people who have already been through it, the fear of the unknown is often the worst bit as with most of our whole situations. We had a chat, and I told him of your experiences, he is happy to take the impryl, ok to go for the urine test and scan (but does want to lose some weight first - he is really super sensitive about his weight) but surgery is an absolute no, which is fine by me and a better outcome than I expected 😀

@Belarita 0% wow! That really is an amazing result! 😎

@Pop1234 I've found it ok so far, no real side effects which I am slightly disappointed by, I was secretly hoping for more energy and a better appetite! But I do feel I'm not really doing this properly, I'm only tracking O by temping and with the last chemical I didn't go for intras because I felt something wasn't right. I think at some point I am going to have to admit to myself this isn't going to happen until I fully commit to the plan. 😕

You 2 are both day 5?! I would already be counting down the days till I could test! Fingers crossed for both of you! 🍀

@Belarita good news you’re not experiencing any side effects on the Pred & fantastic news regarding your partners test results ☺️

When I posted yesterday morning laid in bed I felt great, another day closer to my scan appointment & the sun was shining but oh how short lived that was. I’m still testing each day (because who doesn’t love wasting loads of money on plastic sticks 😂) and the clear blue digital had said 2-3 weeks the night before but the one yesterday morning using my first wee of the day only said 1-2 weeks when I was expecting to be moving towards 3+ weeks 😞 Called my local EPAC & explained that I’d been spotting/ had dark brown sticky discharge for 12 days now and they got me an appointment yesterday afternoon. The scan showed my lining was thick (for me anyway, apparently it varies massively with each person) but that there was no gestational sac 💔 They said if I was confident with my dates (which I am, this plan doesn’t really allow for much guess work) then she was sorry but they’d expect to have seen something. They took my bloods to test my HCG levels and I’ll get the results today & repeat tomorrow. Once I have those I’ll be emailing the clinic to let them know I don’t need my scan appointment and to ask what happens now...
It doesn’t surprise me that we didn’t see anything on the scan as I’ve never seen anything before but I just feel stupid for thinking this time could be different 😔 I know Mr S’s plan isn’t an exact science and we didn’t hand our money over with an absolute guarantee that he’d deliver us a baby but it’s a hard pill to swallow when you’ve been holding onto the hope that this was the answer, only to find out that maybe it isn’t after all 😢 xxxx

@Wishing5tar I am thinking of you. I know the whole watching clear blue scenario all too well.
I had this on the DR S plan and just to warn you, he seemed rather annoyed I'd gone to erpc rather than to him directly. (I said I was too upset). Maybe he wasn't annoyed but in my emotional state I always felt like the naughty one trying to avoid extra costs.
If my 5 miscarriages, 4 were this exact scenario, a blighted ovum/missed miscarriage.
My treatment was amended to include hydroxy. I'm sorry I can't spell it. It then took me much longer than previously to get pregnant. Over 6 months. But it then worked.
I know none of this is going to help in the distress you face today but I hope it will give you hope and confidence to continue on the plan.
Sending you all my love,

@Wishing5tar I'm so sorry to hear this. Nothing I can say to make any of it any better or close to bearable but know that we are all here for you whenever you need us and that we understand probably better than anyone. Take care of yourself lovely x

Oh @Wishing5star I am so sorry. I had a tiny experience of this with my chemical. After spending 1k on treatment to reduce the chance of chemicals, to have another one that actually failed even earlier, really knocked my hopes. I know this isn't the same because I didn't have the weeks of living in hope like you, but I can imagine how I would feel and I'm sad you have to go through it 😥 The thought I am clinging to is plenty of women have been here and failed the first attempt who have then gone on to success, please don't give up hope, and do definitely talk to the clinic in case they can tweak your plan. In the meantime we are all here for you xx

@Wishing5tar I'm so sorry to hear that. 

@KittyKatSmile Did you get sorted with your plan for intralipids?

I've started intralipids again, and need another blood test next week to see if they work or if I'm one of the tiny number of people they don't work for, in which case my consultant will put me on humaira (sp?). I'm trying not to think about any of it too much, and I think DH is doing the same. This time last year I was pregnant for the first time, couldn't believe my luck that IVF had worked on the first go, and it never occurred to me that it would go wrong. How times change! The second time it worked I was on tenterhooks worrying something would go wrong, and now we just don't talk about it at all - as though to contemplate it being a success is tempting fate in some way.

DM has offered us some money to help pay towards it all, and DH is doing a very manly thing of not wanting to take it - would I be wrong to just take it anyway and put it into an account he never looks at?

@ginandtonicformeplease yes they gave me the intralipids last Friday and I'll have a final one 4 weeks after that, just to have done everything possible. I made a formal complaint and the clinic has been brilliant in handling it. The clinical director called me and was mortified that this happened and talked me through what she was going to do to ensure it wouldn't happen again. She also told me my Alpha TNF (is that right??) level was borderline, just to put my mind at rest. They have also said they'll do an extra reassurance scan at 9 weeks for free. I was feeling pretty good about waiting until 10 weeks when I do the Harmony test + scan but being reassured for free is no bad thing I guess....

I know what you mean about ignoring things; quite often the easiest thing to do. And totally you should take the money. Who knows when you and DH might really need it and he'll be pleased it's squirrelled away x

@wishing5tar So sorry to hear your news. Its so disappointing, no matter how hard you try to not to get your hopes up. But there’s so many of Mr S’s success stories where it’s not worked first time and all it needs is a little tweak. It will happen. Thinking of you. Let us know what Mr S says xx

@Wishing5tar really sorry to hear this, thinking of you

@Wishing5tar I'm so sorry this has happened. I really feel for you right now. We all know too well the rollercoaster of hope and sadness this involves. Please don't feel stupid or blame yourself in that way. There's no amount of rationalisation, intellectualisation or managing expectations that can contend with the fact that this is something we all want in an incredibly deep, even primal way. There's no shame in it. Of course you were hopeful and of course you're heartbroken. Really just thinking of you and hoping you are getting everything you need right now. xxx

@Wishing5tar so sorry!

Don’t forget this is what happened to me and I felt the same - like it was just never going to happen for me despite everyone else appearing to have success. We added the Hydroxy, had the heartbreaking early chemical pregnancy and then this success happened.
And just to say, I didn’t have any spotting with mine but my symptoms disappeared and I had a 6 week scan via my NHS fertility clinic (I think l was supposed to have the CRP one a day or so later). The scan showed nothing there at all. I cancelled the CRP scan and saw Mr S for a consultation and he was absolutely fine - not peeved at all.

This WILL happen for you.
Lots of love to you xx

@Naticle thank you for sending love! It was the clinic’s midwives who’d advised me to visit my local EPAC so hopefully Mr S doesn’t take an issue with it 🤞🏽 We live in the north east so travel to the clinic in Epsom takes at least 6 hours in the car each way so no real easy option to just pop and see him.
Thank you for sharing your experience - what does the hydroxy do? Oh I’m so pleased it worked for you! Are you pregnant now or have you already had a baby? ❤️

@KittyKatSmile thanks lovely & I'm so pleased to hear that the clinic is giving you the treatment & service you deserve!! 😘

@Chickjen thanks for sharing! It really does help to know I’m not alone 😞 I do need to focus on the success stories of this thread as I’m definitely not ready to give up yet!

@Anatrina thanks hun & I’ll keep you all updated. I actually ended up emailing the clinic yesterday to give them an update when I got my blood results. My HCG levels were only 88 which I know is low & come lunchtime yesterday I had more of period like bleeding so I know it’s definitely over. The clinic wants me to keep taking my medication until I have my bloods repeated and will likely swap my scan appointment to just a follow up consultation with Mr S.

I should have been getting repeat bloods done this afternoon at 48 hours but we’d already planned a night away to a spa hotel to celebrate our 5 year wedding anniversary so it would have interrupted the couples massage we have booked 😂 thankfully the nurse at the EPAC knows me well and we agreed, given the expected circumstances, to just repeat on Monday morning.

@fnej01 @Belarita thanks ladies 😘 honestly the support on here is amazing!

@DaniMERL thank you, I totally forgot that you’d experienced the same 😔 The Hydroxy seems to be the thing that Mr S adds in when you’ve miscarried on the plan, did you find it took you longer to fall too?

Love to you all & thank you for taking the time to message ✨ xxx

@Wishing5tar not at all! It took 5 months the first time on just the pred - the 6 wk scan was on 2 Jan and as mentioned, nothing there and I had a normal period 2 days later.

It’s definitely good to see Mr S ASAP because he will almost certainly put you on Hydroxy and you have to take it for 6 - 8 weeks before trying again which drove me insane at the time!
It basically meant skipping out Feb and trying again in early March. I fell first time in March but had the Chemical - positives from 9-12dpo but then they disappeared, a day after intralipids! I was very down then and ready to give up.
I had a weird 4 day bleed and we had a relaxed approach to BDing at the end of March.
Low and behold I took a test and was already about 13dpo judging by the darkness of the line. So a bit of a shock and luckily I had taken the pred but would have started it late as my ovulation was not when I thought (cycle days were mixed up).
So I held off by about a week for the intralipids as couldn’t face the same thing again - wasted money.

I would have a lot of hope If I were you, despite how you will be feeling now xx

@Wishing5tar hi. I have a 10 month old daughter.

I am not sure what the hydroxy does - I thought it was an anit malerial but can't see that on wiki now! It's obviously just one more thing for our immune system to deal with which stops it attacking our precious embryos.

Peeved is a good description of his response to me visiting the local erpc instead of his team. I live round the corner from the Epsom clinic so thats probably why he would have preferred to have seen me directly.

I wish I'd had this email chain to consult with 2 years ago (July 2017 was my last niscarriage)

Don't lose hope. By sticking with his plan you're giving yourself the best possible chance of success.

I'm keeping everything crossed for you xx

Afternoon Ladies

@Belarita Ha no worries re the question and no it doesn't at all re CM, hasn't changed a thing and I'm 40(ish!) too so obviously wouldn't want things messing with that area!! If you want anymore info on it just message me X

@Wishing5tar Sorry to hear your news :( So unfair XX

@Belarita and @Chickjen Your posts mentioning the Comet Test have also come at a good time for me as my husband had his (rather shocking) results in a few days ago and we're feeling rather confused with it all. We were a bit annoyed to pay £450 and just get an email with the results (plus he just had to use the disabled loo downstairs in Mr S's office, bit weird, no?!) - and we're confused by ALL the recommendations, which obviously cost around £200/250 = about £1k's worth of treatment. Did anyone proceed with everything recommended or just see the consultant first? (which I think is what we will do)

My husband looked in to Impryl and he's pretty much taking everything in it already (if not more) Does anyone know why they recommend it specifically?

Doing the test has left us upset actually. The report just said 'high risk of miscarriage', that's it, but aren't every 1-in-4 of us at risk from that anyway i.e. it's a little misleading and unhelpful? Also I've heard doing the test on certain days can give different information i.e. how reliable is it? Any thoughts Ladies?

@Belarita How long did your husband do his lifestyle changes for before doing the test again? Also ... Every 24-28 hours!!!!! Bloody hell!

@Belarita I've just re-read your post where you mention it was 4 months - That's amazing. Was he completely off the booze, as in T-Total all that time?

My husband was at a wedding two days before doing his test where he drank a lot .. we just wonder if that buggered up his results a bit!

@EmsIMO sorry to butt in but my DH was completely traumatised by the whole disabled toilet situation! He also said that the air freshener kept going off and it really did not help with the sample. I really thought they would have a specific 'private' room for it.

In terms of the tests, my DH did the urine sample, had the scan and saw the consultant. Although it was useful, we could have read on the internet how to improve it. But it was good to rule out any infection and possible varicose veins that he could have had (which he didn't).

If you don't mind me asking, how bad were your DH results? My DH got 11% high damage and he has basically been taking the vitamins, cut down on booze and caffeine and been trying not to get to hot down there. I'm not sure why they recommend impryl, but the consultant really spoke highly of it.

Also if you read further down that @Belarita's DH has had really good improved results, so try and take comfort in that. It is awful though I know. I found getting my DH's results worse than my own!

Hey @EmsIMO,

Just getting the results through on email is such a rubbish way to find out. I'm really annoyed this happened to you as we made a complaint about this very thing several months ago. We got DH's results last thing on a Friday so we couldn't even call. We sweated and cried about what it could mean all weekend. Horrible. They said that it had been a mistake and his results had accidentally been sent out with a batch of people re-testing (so better versed in how to interpret them). Dr S and the nurses apologised profusely at the time but I wonder how seriously they are taking fixing this. It feels to me like an example of how men's fertility and emotional health in the whole TTC/Parenthood process are really sidelined. I can't believe they'd send a graph with similar wording to a female patient. Do DM me if you want any details or back up to make a complaint.

So, putting that bad bit of practice to one side. My DH started on the Impryl early March. He'd cut out booze around a month before that. He's basically been T total and just had a few drinks in that time on special occasions (the odd glass of fizz at a celebration and a few glasses of wine on a recent holiday.) Giving it up to the extent he has is something that he wanted to do anyway as he felt it was time to readdress his relationship with alcohol and our fertility situation gave him that extra impetus. The advice he had from the consultants was that the odd drink here and there is fine, its binge drinking that's the most damaging. It hasn't been easy for him but there are some really amazing alcohol free beers available now (we should have shares in Nanny State) and that has made a huge difference.* They completely fulfil that psychological need for a cold beer at the end of the day.

From what I understand of Impryl, rather than delivering extra antioxidants for the formation of new sperm, it revs up the body's own antioxidant response. A direct antioxidant load causes another kind of damage so it has to be achieved through the body's own antioxidant system. Dr S explained it all rather well when we met to go over DH's results (we both got our results through at the same time, but of course I got mine revealed, and explained to me in detail, in person .) As your DH is already quite informed about supplements it might be good if you can get a meeting to go through the details of that in person with either Dr S or the male fertility consultant.

At least my DH was spared the disabled loo experience! He gave his samples at the clinic they use near Harley Street. Your DH can just get the form and do it there in the future. It may help to feel a little more control over the circumstances.

New sperm take 3-4 months to form (which makes me think your wedding weekend is unlikely to have had an impact). One of the consultants did ask DH how long he had been keeping it in, as it were, before his first sample and said that does have an impact. So I'd imagine that there is some variation between samples and keeping a good turnover going helps. As ever there are no guarantees but Dr S said that they do sometimes see remarkable improvement with Impryl.

This is a strange world we've found ourselves in eh? And the endless expense is hard to take. I do hope you get answers and quickly.

x

• Alas there is no such thing as good alcohol free wine. Don't let anyone try to persuade you otherwise.

My (sadly now ex) DP had his results over email I believe with little or no explanation. We were livid and both being professional analysts went back with a load of questions which I have to say weren't answered very well at all. Mr S was very reluctant to give any concrete advice or even answers. We felt pretty let down and in the end actually sort of focused on to me side of it but it does of course play on my mind now and then because I'm now pregnant with donor sperm and all seems well (touch wood). I try not to dwell on it.

Shame to hear that others are having negative experiences as well.

Agree wholeheartedly on alcohol free beer (freedam is my favourite if you haven't tried that one); the wine is the work of the devil.

Happy Sunday everyone x

Just chipping in... I also think the delivery of the sperm comet report is poor. Our accompanying email said all was well in a breezy manner but the report summary said there was a increased risk of miscarriage. It left us really shocked as we really hadn’t considered this side of things. We also found the report difficult to read and my husband has a science PhD!
When we queried it we were still told not to worry and at an appointment with Mr S he also out our minds at ease but it’s all a bit of a mystery still.

@EmsIMO we got our results by e-mail too, and the disabled loo scenario! DH said the light kept turning off and he had to keep waving around to keep it on 😂 I think we were both just relieved he got it in the pot!

I need to book a medication review appt soon so we're planning to wait and ask about further investigations then, but in the meantime he is going to take the impryl and ditch his regular supplements, try and lose weight, and try tepid baths (we literally have no shower 😕) he doesn't really drink so we can't blame that.

I think the urine test sounds worthwhile but as we are both completely set against any type of surgery I'm not so sure the scan is worth it. Plus I am already fed up of all the appts and cost with no progress to show for it.

I quite like Eisberg Sauvignon Blanc alcohol free, but then I am a cider drinker 🍻

Morning Ladies

Thanks so much for coming back to me on the Comet test @DaniMERL @Pop1234 @Chickjen @KittyKatSmile and @Belarita and it seems we are not alone in how we felt! X

@Pop1234 and @Chickjen We did have a chuckle reading your comments as my husband said the light kept going off too!! I mean honestly!! Talk about working under pressure!! We will be complaining, @Belarita** Thanks for the info - Annoying to know people have complained before and nothing has seemingly been done.

@Pop1234 His results were: Average 52%, Low 4% & High 58%.

After our initial panic we read the info on the Comet website (actually useful and why they don't send this out with the report??) and read all the comments on here which helped A LOT. He's going to take the Impryl and see the consultant Mr Gordon. He contacted his GP and we've worked out he's actually had some of the tests recommended (he had to when we did IVF) so that's a few things ticked off the list already.

@Belarita Thanks for sharing what you're husband did, that's really useful and yes good point re it taking 3 months i.e. the wedding wouldn't have effected his result that day. Also agreed with AF beer, we've just got into that - wouldn't even bother with the wines (would rather drink the real stuff!) X

(p.s. Does anyone know why it keeps adding ** after the usernames on here when I post?!)

@EmsIMO it seems it hasn't given you any * today, it has given you bold instead

@KittyKatSmile Ahhhh I see! It's just me who can see the stars ... I think I get it! Thanks x