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

@HoldingOn2Hope that made me cry 😢 a boy, I didn't realise they checked that, if it wasn't hard enough to take already that somehow makes it much worse. I hope you can draw some hope from the fact there were no abnormalities and give it another go with the full 25mg pred at the very least, if not hydroxy as well. ❤️
@Wishing5tar so glad things are going the right way now. Good luck!! 🍀

Huzzah @Wishing5tar. Excellent news. Really pleased for you. Whack the Barry White on 😉. Xx

I'm so so sorry @HoldingOn2Hope. That's awful. I wish things were different for you and your lovely baby. Take as much time as you need to try and process what you have been through. I think you'll know what to do when you've had a few days. Thinking of you and your partner. 💔 x

@HoldingOn2Hope I'm so sorry 😔 that must've been heartbreaking to find out x

Thank you ladies, I don't know why it makes it all that worse knowing the gender. I just felt totally heartbroken reading the report and have cried all evening. Tomorrow is a new day xc

@HoldingOn2Hope I’m so sorry that this has happened to you :( x

It does make it harder knowing the gender. I find it gives your loss more meaning but I also think it has helped me recognise what I've been through. I've also named (well nicknamed all mine) and I have had stack rings made with their names on. It helped I had counselling to think about how to help myself recognise I was a mum, just one with empty arms. Cry all you want @HoldingOn2Hope because it's really, really sad what has happened to you, your partner and your lovely babies. I'm very sorry. xxx

Please help if you can :)

I hope it’s ok to post this. I had a positive test result this morning. I’m petrified this will turn into another miscarriage again. I’ve had 4 blighted ovum’s. I kept my last two kids when on the Coventry protocol. The private consultant has advised against meds this time due to Covid but she’s not a specialist in recurrent miscarriage. I anyone else in my shoes in terms of very early miscarriages but have been told to take preds etc and is there a safe range. I only had 5mg with my youngest two. I didn’t take anything during my last miscarriage and am trying to work out whether to argue for it or accept the advice. Any advice very much welcome as my brain is a bit fried. Thanks x

@HoldingOn2Hope - sending lots of love. I wish the results didn’t take so long, whilst the loss never really goes away, it always seems that just as life is starting to get better - BAM, they hit you with a heart breaking report and the feelings flood straight back!
Do you mind me asking how long you’ve waited for your results please? So I can be prepared for mine - not sure whether to expect Covid to interfere and prolong them but I’m already on tender hooks.

Going back a few posts, totally agree about wanting to scream about RM from the rooftops. This time around, I’ve found myself getting really angry that there is no real help/funding for us ladies (and partners). You have a group of women, who would give their right arm for a baby - we change our diets, pay thousands to see private doctors, have alternative therapy, cut out caffeine etc (this list is endless) - then you’ve got people who refuse to give up drinking or smoking etc and funding is thrown at them.

I’m probably being really unreasonable, but it helps to be angry at something other than my body for a bit.

@Lovemylittlebear if you have a combination that's worked twice I would totally be pushing for it this time too, 5mg is tiny anyway, other ladies here are on a higher dose than that even with the covid situation.

@Lovemylittlebear
Congrats on the BFP
Definitely push for the pred with whoever gave it to you last time. They have history knowing it works for you, and you can show it didn’t when you omitted it last time.
My GP told me that those on 20mg of pred were those being told to shield. 5mg could be a maintenance dose for lots of conditions and those people weren’t advised to shield throughout the height of Covid. Plus shielding is coming to an end now, so they may be more willing to prescribe it than before. Fingers crossed for you 🤞🏻

Thank you all 🙏🏽 You're all warriors xx

@Jellystar23 I waited almost 8 weeks, I was told 4-6 but maybe a delay due to covid. Although the nurse at the epau said there shouldn't be a delay as erpc/mva's are only done during covid as an absolute must so she didn't think it would take more than 4.

@Lovemylittlebear I really hope this is your rainbow 🌈 xx

thank you guys - I think I should be able to get the clexane, preds and progesterone....I needed the spurring on to fight for it, thank you very much for the encouragement xx

I hope you don't all think I'm out of my mind for suggesting this but does anyone want to do a zoom call or something in a couple of weeks? Absolutely no pressure but I have been to a Sands group before, and I've thought about joining a miscarriage association zoom group recently but I suppose I think us pred thread ladies are quite unique in our experiences. A virtual call might not be everyone's cup of tea but I thought I'd put the idea out there. I feel nervous just thinking about it mind! xx

@HoldingOn2Hope - thank you ❤️ I was told 6-8 weeks so I’ll wait the 8 and then get pestering my consultants secretary for an appointment
They wouldn’t even give me the option of an ERPC because if Covid, I had to have medical management. Luckily though they allowed my husband to stay with at the hospital. Can’t imagine going through all those hours alone.

@HoldingOn2Hope I wasn't aware the hospital could tell you the gender when examining tissue for chromosomal issues. I'm so so sorry. That's hard to take. I don't think I'd want to know the gender - that would make me really sad too. I'm waiting on my results at the end of the month and praying there's an issue, so at least you can try again with more confidence. But i just have a feeling it's going to be normal and throw up more questions. I totally get what you said about pregnancies in your friendship group too. I'm finding that so tough right now, as everyone around me seems to get pregnant easily and have no issues. Life is so unfair. I've had to avoid pregnant friends and ones with kids right now, as I'm just not strong enough to

@Wishing5tar Well done! Glad to hear you've had some good news.

@hrtbrk2 It sounds like talking to your friend really helped. Please keep us posted on your journey with this. I honestly do believe that you have to get to a point where being happy and moving forwards with your life is the most important thing.

Thanks for all your advice about antidepressants, ladies. I've decided not to go down that route for now - I just don't think I can until I know the drug regime I'll be on. As you said @KtAgs, it's a long term thing and probably isn't wise right now. I've decided to use the time while waiting for test results and starting another IVF cycle/transfer to try and do everything I can to be physically in shape. A doctor friend of mind recommended going dairy and gluten free because of the amount of inflammatory conditions I have (asthma, psoriasis, eczema, acne, allergies) so I'm going to give it a try. I've also started acupuncture and I'm going to see a fertility nutritionist. Feels good to be in control on something! xx

@HoldingOn2Hope it's a lot harder when they tell you it's a boy or girl. I remember crying for what seemed like and eternity. It just made everything so much more painful. I can understand how you just be feeling. Time is a good healer and you will eventually start to feel better and maybe have some more clarity in what to do next. X

@HoldingOn2Hope Thinking of you ❤️

Please can anyone remind me when you are supposed to take preds clexane and cyclogest? I’ve a heap of supplements from naturopathic doctor too so trying to work out what to take when. Also this isn’t the naturopathic d I have been seeing but any interested check out the fertility detective on Instagram- I really like her. She is evidence based and has good interpersonal skills and does a free q and a on a Friday x

Sorry when as in are the morning drugs? Trying to remember from last time and think I’ve just blocked it all out x

Hi!
I do the injection in the evening around 8pm, aspirine evening too, and for the cyclogest, I have 1 in the morning and 1 in the evening, 400 mg each. Unfortunately, I don't have pred, but I will press my Dr to give it to me at my next positive yes, hopefully in 3 weeks!
Take care xx

@Lovemylittlebear pred at the end of breakfast 🍽

Thank you ever so much guys - really really appreciate this xx

Morning ladies, I had a rough evening and night last night. I feel as though life is returning to normal (which it must) just without being pregnant.
I hope this is ok to post ...
My wonderful sister has also offered to be a surrogate for me - and whilst I’m extremely grateful for her offer, I just don’t know what to think. Has anyone had a similar experience or thoughts?
What she has offered me is absolutely amazing, but my current thoughts are:

• am I ready to accept my body doesn’t work? After this mc, I was adamant that I couldn’t do this pain again. Four times in a year has broken me but you know what it’s like after a week or so you start yearning to be pregnant again.
• I wouldn’t want to put her through the emotions of a mc, or her having to watch my heartbreak if it didn’t work out.

I’m still waiting on results, so I will be waiting for those before embarking on anything. Having a baby has gone past the point of wanting, it now feels like a need. I know I haven’t exhausted all avenues yet, but I keep thinking realistically if it is a genetic issue (unlikely but possible), there isn’t really anything that can be done. IVF with PGD has no positive evidence to the point where my local private IVF clinic doesn’t even offer it. I get pregnant very easily - explored the possibility of hyper fertility so take progesterone from ovulation. So (I’m no expert on this - advice welcomed if you’ve heard or experienced otherwise) but I feel IVF would be a waste of money. My support network seem to think if we take away the stress of wanting and hoping the pregnancy works out by someone carrying for me, I may go on to carry fully one day.

Apologies for the long message on a Saturday 🙈 my head is in a spin and nobody understands these emotions unless you’ve unfortunately been there.

Also @Everhopeful35 - love the idea of going dairy/gluten free. I may try this too. Thanks.

Hey @Jellystar23

What a wonderful sister you have :)

You could try a naturopathic doctor someone like the fertility detective that I mentioned. There is a lot of research out there and info that you may possibly glean from going this route.

Prior to going down this route myself I had no idea my testosterone fsh and lh were the wrong way round. I’m trying my best re nutrition and supplements - it is really very strict but based on science. Interestingly some of the tests I had done indicated low b vitamins and mitochondrial issues which I really hope are about rectified.

I think that your sister has offered you another future option to explore but you have some doors open still :) the clinic and Coventry and then diet and ND stuff. Also doxy May potentially help (we don’t know how successful that trial will be with helping people with unexplained pl. I’m so sorry You have had such a rough ride - it’s so shit and it’s normal to feel how you are feeling xxx