Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Hi everyone. Really interested to come across this thread. I've had two MMCs in 7 months (have one healthy 3yo) and am investigating APS and other immune factors. I've had some tests done for the former via UcLH as already have an autoimmune condition I'm treated for there. Have been referred to numerous RM clinics but no appts yet.
Interested to hear anything I can do myself/ via NHS others have found useful before going down private route. Thank you.

Hi everyone sorry I’ve not posted in a while, I hope your all looking after yourselves,
Ive been moving so I had a lot to catch up on,

@HoldingOn2Hope I’ve been taking hydroxy now for 2 months and definitely have some side effects at the start,
Nauseous, headaches, irritable, and really hungry 🤦🏻‍♀️, also had light tingling feeling up my arms almost itchy, still irritable at times and the odd bad head but other symptoms seemed to have gone now.
Hopefully will all be worth it I’m due to test tomorrow fingers crossed,
I’ve also been taking CoQ10 for few months now that my acupuncturist recommended.

Hi all, not been on here for ages, hope everyone is doing okay. No news at my end, I'm still taking letrozole for ovulation and Dr S put me on hydroxy a few months back but we've had no joy yet. Now on the waiting list for ivf as 41 now and obviously needing a bit of help, am getting a bit frustrated with all of this to be honest, nothing much is happening and its taking weeks to even get a phonecall back from the ivf clinic! I was wondering if anyone else had felt really tired and foggy headed on the hydroxy? I had headaches and tummy troubles the first month or two but they seem to have settled, but this tiredness is something else! Hoping it will settle down in time xx

I've not posted much on here but just had a confusing cycle and wondered if anyone has had similar. I'm on hydroxy and am taking progesterone from ovulation.

I find it hard to work out exactly when I ovulate as I don't seem to get a very strong peak on opks, but my period does normally seem to arrive exactly two weeks after the strongest line. I'm still unsure when to start the progesterone though - should I wait a couple days after the peak?

This month I stopped the progesterone after a negative result but then two days later got a very faint positive so started it again, but also started spotting the same day. Now 4 days later I am still spotting (but no proper bleed) but am now getting clear negative results and don't feel pregnant.

Does that sound like a chemical pregnancy and should I stop the progesterone now? Would it delay my next cycle if I carry on taking it?

Others were asking about side effects on hydroxy. I haven't really had much. A few headaches at the beginning and once or twice a very slight tingling in my arms (I was sat outside and it felt like it was just starting to rain but it wasn't!).

Good morning ladies

I'm due to start gonal-f this cycle, af not due til next week. Started hydroxy and just feel very tired with and and also tingling in my back too.
Wishing everyone luck with good follicle scans and bfps.
@HoldingOn2Hope so sorry that must have been so hard to read. You will heal from this and get the courage to start again.
@hrtbrk2 I feel your pain I really do. I'm sure you will make the best decision for you.

For those on hydroxy, I had very few side effects. I get the tingly arm thing towards the end of my cycle but only for a couple of days. I figure there are so many women with Lupus who are on it and get pregnant and have successful pregnancies, that I tend not to worry about it.

@hippo20 that is confusing. I take the progesterone the day after ovulation. I use the clear blue fertility monitor as although its expensive, I use FMU and I get highs and peaks each month as the other ov sticks just don't work for me. and like you, I get my period exactly 14 days after the day I ovulate. So it sounds like you've got a handle on when you ovulate? I do the progesterone the day after ovulation. I've also had faint positives but from testing early (naughty). They go before 10dpo. I would stop the progesterone if you're now getting negatives but is it worth speaking to the clinic? let us know how you're getting on. x

Hello All,

I feel like when I talk to someone about my journey so far I get told something new...I then think shall I give it ago?
A GP friend told me the benefits of intermittent fasting and that maybe I should try it...something to do with it balancing hormones and insulin levels. Right now I'm like intermittent fasting, gluten free, whole grain/wholemeal everything, no red meat, reduce dairy but then drink lots of milk during ovulation etc etc 🙄 I might just start eating Fresh Air!
How do 'normal' ppl who eat junk, smoke, drink, no exercise and have sex once get pregnant?
It's a new week, a new start! Hoping positives for everyone this cycle :) xx

@KtAgs thanks. I must be ovulating when I think but it just adds to the confusion when I don't get a clear result! I'll try clear blue and see if they are any better, though I'd rather not have to track ovulation! Is the progesterone to counter another medication or is it belt and braces? My losses were at 7 weeks and 11 weeks so I don't feel like the problem has been that early before.

I tried emailing the NHS nurse but she always seems to be on annual leave at the moment! I'm OK but had already got my hopes up a bit as I thought I had a couple pregnancy symptoms when I got the faint positive. Fingers crossed for next cycle (and for everyone else!).

@Hippo20 that sounds like the chemical i had when I did ivf (I wasn't on hydroxy then)....i was advised to stop the progesterone with the negative result as it can delay your period (you could request an hcg test from your GP if you want to be totally sure its negative though i think todays home tests are really reliable).

@HoldingOn2Hope this is so me aswell! Approaching 3 years of ttc our second and i think I've tried it all....acupuncture, dairy free, caffeine free, alcohol free, inofolic plus every supplement possible.....its exhausting isn't it! I've missed out on exotic holidays with family and friends as I was worried about zika if I did fall pregnant (also they make you wait 6 months to do ivf if you've been to any countries with the virus).....funnily enough the months I have got pregnant have been the ones I said stuff it, drank wine and relaxed! Xx

OvuSense is very good for those wanting an accurate idea of when they ovulate. It also give you an idea if you have any luteal phase issues and can show issues with progesterone if temps drop on second half etc xx

Been a little quiet on here dealing with my latest loss. I'm so sorry @HoldingOn2Hope, I'm awaiting my karotyping results to arrive in the next couple of weeks. I thought my mmc in April was tough, but this one...some days I think I'm ok and then I suddenly cannot breathe. The anxiety is physical. This may be a bit of an odd one, but have any of you tried alternative (therapies) to try and deal with the losses? Such as hypnotherapy or reiki or bioenergy (chakra) healing? I'm at the point I'm blaming myself for having caused my losses by believing it will go wrong...by constantly thinking negative thoughts...by expecting a miscarriage with a positive test...It's almost like I'm scaring the babies away with my thoughts. I don't know how to help myself. If you have tried unconventional therapies, seen someone spiritual, would you be willing to share your experiences? Did it help you?

@Lovemylittlebear - thank you for your opinion re. surrogacy. I think I just feel as though I’m being ungrateful (probs just my emotions). Did you manage to get your medication prescribed?

@HoldingOn2Hope - 100% on the drinking smoking etc. Frustrates me that I can’t drink a can of coke (guilty pleasure) without feeling guilty about the caffeine.

@Wireless77 - I know exactly what you mean about anxiety up and down. I’ve never felt like this after a loss. With regards to alternative therapy, I have reflexology - I started on a whim, thinking it may help but found it helped with my stress levels so much. You know when you don’t know your stressed until your not so stressed. Covid got in the way during my last loss but recently started back up again. Why I’m telling you this is my reflexologist also practices reiki. At my first appointment, at the end she asked me if I’d noticed any sensations, I hadn’t (but I’m quite a closed book and really sceptical of anything like this). She got really emotional which had never happened before, and told me my root/base chakra was giving off lots of energy. She also told me that she believes my baby was very much still with me so we have decided through my next appointment we will work on helping me deal with the emotional side of things, rather than the hormonal side of getting my body ready.
When I went home and read about the root chakra (I was completely unaware any of this existed), I could relate to so much of it. So whilst I haven’t embarked on any other alternative therapies, that’s something I have recently experienced around the topic.
Easier said than done I know but please don’t blame yourself ❤️ I think this loss had hit me harder because I truly believed I was having this baby, I felt completely different to my previous pregnancies, and the positive thinking didn’t help me. I think the negative thoughts are a coping mechanism, we know how hard the heartbreak is and so we almost prepare for it so it doesn’t catch us off guard.

Hey guys, thanks so much for all your thoughts... just to weigh in on a couple of questions I've seen:

@HoldingOn2Hope with regards to diet it sounds like you are doing all the right things, I swear by it to balance hormones and reduce inflammation as I've mentioned - the only thing I think that is missing from your list was increased protein... this is actually one of the most important ones. I know I said I'd put some recipe ideas up for you all but got a bit blind sided last week with our news so will pop those up shortly.

@Wireless77 I had hypnotherapy for my biggest loss. A while after my 16 week loss I just felt I wasn't over it and was really struggling, also not falling pregnant again either - I'd been offered zero help or counselling from the hospital and someone recommended it to me... it was a total game changer. I had 3 sessions, one per week for 3 weeks and the week after I finished I fell pregnant. During the hypno she basically trained my brain to think entirely differently about the MC, helped my mind and body let go of it and helped me move on and think of things in the future - effectively replacing feelings of guilt, anger, grief etc with hope and positivity. Obviously there are a lot of things in play to get the positive test I did but I do think there is something to be said for mind and body working together. Obvs I lost that pregnancy as I have all of them but I've seen her a few times since and she really helps me process things in a way I wouldn't be able to otherwise. Hope that helps.

@hrtbrk2 hello lovely, totally understand and don't worry re recipes - in your own time. I ordered the protein powder and have been having that for 2 weeks plus ok trying to eat more fish and eggs - at least each once a week. I've been told so many benefits of intermittent fasting but just feel I'm depriving my body of nutrients for 16 hours lol! I do 11-8 so not quite 16 hours.
So far today I've had mushrooms in olive oil on toast and a cuppa, shake for lunch with a nectarine and fancied a bit of cheese, water throughout, rice biccies and hummus as my snack and I'm not sure what dinner is this eve.
I'm drinking 3 litres of water a day though! I'll have a look at protein receipts to up that. I hope you're feeling a little better, it's such an emotional rollercoaster xx

So OH's dna fragmentation results are in but I don't understand them. The letter says they are fine however Dr S has sent a pathway for further treatment. Is he just conning me now?
What's pissed me off is that the test is done at a different lab to the one in dec so hard to compare myself and as usual no answer at the clinic! I mean they should really call to discuss them not just send a poxy email! Sorry I don't mean to be negative but it's really beginning to eff me off!

@HoldingOn2Hope I don't blame you at all - the communication (or lack there of it) is key to feeling confident in your care - would you be up for posting the results on here, I could have a look at it in comparison to my OH's if you like? I can't believe they've said they're fine but not told you why you need more treatment?!

Sounds good on that diet lovely - it's hard but so worth it! I was told (and this isn't easy) to put some kind of protein in every meal - so some variation of eggs, fish, lentils/beans, seeds and nuts

For example I'd have protein powder with my breakfast then maybe eggs and avocado on toast for lunch and then fish for dinner or lentil/bean based chilli for tea for example with a handful of granola or nuts for snacks, my protein intake will equal my carb in take if that makes sense. I don't eat meat so it's even harder to incorporate the protein but if you do then obviously chicken makes life a lot easier!! Xx

Oh I'd be mad @HoldingOn2Hope. They shouldn't be indecipherable! Get Mr S to clarify I reckon. But also they always suggest more treatment don't they?

Sounds really good about all the changes you've made. I did intermittent fasting last year and I did fall pregnant that month but honestly, I can't say it made a difference.

I've decided I'm gonna do less changing of my lifestyle because I think its making me unhappy and its not like I'm getting pregnant quicker. If im not preggers, at least I can have some fun because the stress its putting me under is so not worth it. Thank goodness for you gals who understand how hard it is! ❤

And @Wireless77 thats partly why I want to try and make my life a bit fuller as I've felt really sad and stressed being so focused on TTC. I've signed up for headspace for a year and reflexology is lovely. I'm all for the alternative therapies. Xx

@KtAgs @hrtbrk2 it's just annoying! I mean I ended up calling the clinic spoke to one of the nurses who admitted the results were 'very good' so why on earth was the varicole surgery a suggestion? Basically the ideal result is btw 0-15% and Mr S likes it's to be about 10%, OH's was 11% so I was like wtf! My OH has taken this whole infertility/mc journey quite badly, he tries not to show it but he at time's blames himself as they really went on at home about the dna results in Dec so he was really upset when he got the email. I've told the clinic under no circumstances are they to email him again even if it concerns him and he's writing to them to authorise all contact with me. I've just had a detox bath to relax as I was really annoyed, I'll post the results.

@KtAgs I know what you mean, my Ayurvedic Dr is convinced I have inflammation in the my uterus although I took doxy in January so she's suggested intermittent fasting and a mini detox. I totally get you though it's bad enough we are going through this without the added stress of changing lifestyles

So December is the chart and the letter is this months. Done at different labs which is silly as hard to compete.

*compare

@HoldingOn2Hope I can't believe that even a positive/within range result comes back with further instructions for improvement. Does anyone ever get to the stage where they think all these fertility specialists are con artists?? I'm at the point where I don't know who to trust and letters like this make me angry. You should totally ignore this and bask in your positive news. Weirdly, my husband also got his fragmentation result yesterday. It was 16.9% so it's outside the normal range. But by less than 2%. So how significant is that? I just feel that a slightly abnormal result can't be the cause of three miscarriages, but perhaps I'm wrong... I'm worried now about what Shehata will day at our follow up with him in a couple of weeks. We don't want to wait months for the fragmentation to improve... we were hoping to do another transfer this side of Christmas.

@Everhopeful35 exactly my thoughts about the 'con artists' although I'm also registered with another private clinic incase we go down ivf and they called me today and said the results were great!
16.9% is 2% over so I wouldn't worry too much about it. Is your OH taking Impryl supplements? as I do believe they have really helped my DH as well as a couple of other vits such as C,D,E. xx

@Everhopeful35 I mean if the pathway they had sent said 'continue impryl' and maybe some dietary changes fine but it actually read 'consider scrotum scan, abdominal scan and varicocele surgery' that's what annoyed me. And if that was really the case why not call to say actually you should consider this before you spend £££'s on gonal f injections for next cycle. There's no real guidance. We all know what we are doing with meds etc and sometimes I think I'm only at the clinic to get prescriptions otherwise I know the drill now! 🙄
I'm just pleased it's improved, DH was really worried yday and I do think us women are warriors whereas men tend to be the worriers!! 🤣

Hubby is due to have his repeated too. I'm a bit put off tbh. I'd rather not know because its harder to hold on to hope! Unless there is a variocele. But to be fair, I think ours said all that too and Mr S hasn't really chased any of it. Why have they changed the company?

Well done on all the improvements lads 👏🏼👏🏼😉. Xx

Can I jump in and ask you ladies if they recommend any specific course of treatment for DNA frag?
My reflexologist recommended my husband get checked (had always assumed it was my issue, never considered anything else) but when I asked my consultant - he told me his advice would be to save my money because they only ever recommend antioxidants and diet, so why not just do that anyway. He’s always been straight up and honest but I’ve read about it on a lot forums and wondered what others doctors were advising them and whether you guys think it’s worth looking into. TIA xx