Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable 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

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@Jellystar23 Ha I am as bad! I deleted my email with my results and then couldn't find them :) - thankfully i had sent it to my other half too!

@LRL12 Congrats on making it to 17 weeks :)! Have you started enjoying the pregnancy now? @KtAgs How are you getting on? You must be similar?

@rainwillmaketheflowersgrow Welcome to the forum :) and great you have your plan now!

First month trying for us on the plan, think it is a BFN for me :(....due Monday so we shall see. I know this sounds silly, but its kinda of stressing me out testing so early / regularly. Other times I would test once and if wasn't positive I would wait until 2 days before my period was due and then I knew for sure.... Also i hate how the progesterone gives you pregnancy like symptoms because now i cant tell if i have real symptoms or not:/! Anyway these are clearly not issues in the grand scheme of things!.

Just back from spinning, so happy gym classes are back on!

@Jellystar23 I just read your message about veins....I am the EXACT same....Last pregnancy when i was getting intralips the nurse tried about 12 times ...and had to give up...i was black and blue for weeks. Same when i go to GPs, usually a few of them have to try....and they always say your veins aren't one of your good features are they....hilarious....not ;)

Thanks @LookingforAnswers86. I'm 18 weeks now. Have my anomaly scan next week and I'm pretty scared (as I found out I'd had lost our first pregnancy). But i am feeling him move now so have to take each day as I can.

I've been put on 150mg of aspirin by my NHS consultant so I'm in line with local guidelines. Because of my 2nd trimester loss, Mr S' plan was for me to be on it for most of the pregnancy. Xx

Sounds like so many of you have had a really rough time with bleeding and repeated scans. Also that some of you have had results recently. I'm really pleased that you have got some answers and hope going into 2021 ♥️. I have everything crossed for you ladies TTC and in early pregnancy 🤞. Katy x

@KtAgs “him” - a little boy?!! :) Oh you must be so nervous but we all have everything crossed for you x

@Jellystar23 and @LookingforAnswers86 well I swear I must have heard one of you in the intralipids room something like a few weeks ago. I was sitting in the middle and couldn’t see around the curtain but the nurses tried and failed for ages to find a vein on the lady to my left... ;)

@rainwillmaketheflowersgrow it’s so great you have some answers now. It makes such a difference doesn’t it? Now can you start the next hopefully positive stage of this journey we’re all on. Wishing you so much luck x

Ps hear hear your last message @KtAgs x

Thanks everyone!

@LaurenAB94 I can't believe how many times it has been missed! So bad! I need to see if the gp will give me metformin now too. I've struggled my whole life with what felt like unreasonable weight gain so at least this is an answer for that! And yes we're waiting til January- first intralipids on jan 11. Hoping the metformin won't ruin my Christmas 😂

I also have terrible veins! It usually takes a few attempts and worse when I'm pregnant!

Sending you all so much hope and strength

@rainwillmaketheflowersgrow it will give you diarrhoea for the first few weeks on it apparently that's normal so keep some Imodium handy if it gets too bad. He said to me it's your body balancing out again. Fingers crossed you don't get too many side effects. X

@rainwillmaketheflowersgrow I took one in the morning with breakfast and one in the evening with dinner, I had zero side affects at all, so hopefully you'll be lucky too!

@rainwillmaketheflowersgrow hi! I’ve been checked for PCOS a few times too, and they’ve always said I don’t have it - I was told after my last loss that they had been considering putting me on metformin, but decided not to, which of course makes me feel so angry because what if that would have made a difference?! And now I’ll never know for sure. Do you know if pcos affects late losses or just early ones?

Also - I’ll be there on the 11th too see you there!

@LookingforAnswers86
I will do more now I think I’ve had awful sickness which seems to be going now thank god,
We found out yesterday that we’re having a girl which has made it all feel more real & been told I can stop all the drugs which I’m really happy about.
Time to start enjoying it hopefully start to feel her moving in next week or so ☺️
I was there yesterday from 2.30 till 4.30 ish 👋🏼

Hi ladies,

It’s so nice to hear such great news for those of you who have recently gotten BFPs and from those who have made it to the second trimester - congratulations it must be a wonderful feeling!

I had my first appointment with Mr S 2 weeks ago. It went ok - lots and lots of blood was taken... We live in Ireland and my DH wasn’t able to make it over to the appointment because of work, so it was all a little intimidating tbh. Mr S was pretty adamant that we both need to be there in person for the results appointment so I’ve had to push it back until the 25th of January so my DH can come.

I’m struggling to cope with such an extended period of “not trying” which I know sounds crazy and a little bit spoilt. Sometimes I wonder if we just tried on our own maybe it would all be ok this time, but then I remind myself of how much the tests cost so I’d better wait for the results! It will have been 3 cycles since my CP when we have our results appointment. Do any of you ladies have any tips for getting through this? I’m planning to enjoy some nice drinks and ALL the food over Christmas and then maybe try a health kick in January to prepare for TTC again. Have any of you tried cutting out gluten and found it made a difference? I’ve read that it can be inflammatory. I do love bread though...

Sorry for my little rant!

@NessyT91 I completely understand I didn't like not being able to try again but try your best to enjoy Xmas and then try again in January.
I've done gluten free and anti inflammatory diets before and they've made no difference for me.

@Daffodil21 aww I'm glad you didn't have any side effects, I went on 1 tablet 3 times a day straight away for might be because of that.

@rainwillmaketheflowersgrow PCOS causes insulin resistance so can causes losses in 1st or 2nd trimester they usually test you at 28weeks to check if you have gestational diabetes and if not you come off metformin . I've always had 1st trimester losses not sure about anyone else. Hope this helps x

Hi @Nessy91, I totally understand where you're coming from. I felt the same as lockdown started fully and then we got our results the first week of April. And Mr S said we weren't allowed to try, he wouldn't prescribe meds and with no end date. It drove me a bit insane for that month. I threw myself into some gardening (hard to do in Jan) and exercise, and eating well. I also drank when I felt like it. Because LIFE. Luckily, I was able to start the hydroxy mid May but it did affect me. Having said that, I was glad I had the meds in my system when I did get pregnant because it was one of the few reassuring things I could tell myself - that this time, I had everything possibly on my side and anything else was out of my control. But ultimately, you've got to do what works for you.

I also have looked into going gluten free and decided against dropping any food group without good reason. But, I did follow the mediterranean diet fairly closely (recommended to my husband to improve his sperm after bad DNA fragmentation results). which takes out a lot of white carbs so perhaps that impacted inflammation? Hope that helps!

And yes @Rebecca9876 it's a boy :) and congrats @LRL12 on finding out you're having a girl.

Katy x

Yes congrats @LRL12 on a girl!! That’s one pink and one blue to give all of us hope in the run up to Christmas :)

@NessyT91 hello, sorry you are here. I also had a slightly enforced break earlier this year but it did me the world of good in the end. I exercised, drank and enjoyed myself (have never tried gluten free but I just think everything in moderation unless there’s a good medical reason not to - nicer to be happy and enjoy things). Then when we were ready to go on all the meds again, it worked for us that month. I really hope you can do something similar over Christmas; I’m a great believer in happy mind, happy body (plus meds 🤣)! xx

Hi @NessyT91 welcome to the group, I didn’t cut anything out and just tried to be as healthy as I could be also didn’t restrict myself for having a few glasses of wine ect,
Odd that he’s said your other half HAS to be there as my husband lives and works in Paris and was only able to attend a couple of my appointments? my initial consultation and my results I had my mum come with me, my husband was only able to come to the 8wk and 16wk scans because of covid quarantine ect,
Enjoy your Christmas eat and drink what you want and like you say get on a health kick in the new year (as we all do) to help pass the time, you’ll be surprised how quickly it will come round I’m sure.

@Tinpo ooo see you there!

@LaurenAB94 yea he said to do one a day then build up to 3 if my tummy seems ok!

@NessyT91 welcome to the group. I'm sorry you're here. I cute out gluten during our 4th loss and it made no difference so I've gone back to all in moderation.
Although with my newly discovered PCOS I've been advised to stick to low GI foods anyway so that will reduce refined white carbs

If you do choose gluten free I did find some great substitutes so I barely felt the change! Let me know and I can't tell you what to look for!

@LookingforAnswers86 I’m so glad I’m not alone! I feel AWFUL every time I go in. Mr S even asks if I’m going to behave 😩😂

@LRL12 and @KtAgs SUCH amazing news! Congratulations. I’m so glad to hear you are both doing well 😘

@NessyT91 is there anyway you could possibly do a zoom call with Mr S with your husband there. I totally understand how frustrating it is. I stupidly went GF before my appointment with Mr S then realised he was going to do a gluten antigen test so stuffed my face with carbs galore the week before the appointment 🙄 I did find that I felt better, but that could have just been a placebo effect. I had no ill effects when I started eating gluten again, despite being GF for about 3 months.

Those taking Metformin - try and take with a substantial amount of food and definitely build the dose up. That should help limit the side effects.

I'm on metformin, aspirin , hydroxychloroquine, cyclogest ,
Do you think it would be ok to have 1 glass of Buck's Fizz on Xmas day?
Not sure with the hydroxychloroquine?
Thanks in advance

@LaurenAB94 I was on the same as you other then the metformin and would have couple drinks now and again and was fine. X

@LRL12 brill thanks xx

Hi ladies, I'm totally out of the loop on all the messages - going to read through and catch up on them now. I've had a rough couple of days, as my bleeding returned and I've also had the worst morning sickness, meaning I haven't got out of bed. After more bleeding this morning, we decided to book a private scan in central London as we couldn't wait until Tuesday. We were fearing the worst but thankfully we now have a 6mm fetal pole with a strong heartbeat of 189bpm. We've never had anything like this before so it's a huge milestone. Unfortunately, the area of bleeding is still there and the sonographer said it's hard to tell whether it's the remnants of a second pregnancy sac or an SCH. It's half the size of the main sac though, so that's something at least. Just going to rest up now and be happy to be over the first hurdle. xx

@Everhopeful35 so sorry you are bleeding too. But great news it’s all ok.

After my last message saying I’d stopped bleeding a week or so ago, I of course almost immediately started up again... This is the first time I haven’t rushed for a scan though and am just waiting it out hoping it’s ok. For me, unfortunately, this is just how the pregnancy is going to be - and I hate it.

I think you are probably the same as me? I hope that gives some consultation - I’ve been off and on bleeding for 9 weeks now and the pregnancy has survived. They also can’t give me a definitive answer about what is causing it, whether the lost twin or a hematoma or something else. It’s so upsetting and frustrating but I think it’s just part of pregnancy for a few unlucky women like us. Hang on in there!!

And I am utterly over the moon for you for reaching this milestone - you are past previous losses and that is MASSIVE!!! Keep the faith and try not to let the bleeds get you down, it’s going well so far xxx

*consolation ;)

@Rebecca9876 I'm so sorry you're bleeding too 😔 Can I ask, do you get any pain at all? And is it usually brown (old) blood? Sorry to be graphic, but it's good to know for reassurance. I've not really had pain but the colour of the blood does change and when it's more pink/red I freak out massively. I really hope yours stops again. When's your next scan?

@Jellystar23 Not sure if I said, but congrats on your BFP! Have you had intralipids? Hope all's okay so far.

@LRL12 and @KtAgs How wonderful that your pregnancies are going well and you've found out the sexes! Thrilled for you both.

@NessyT91 I agree that you should ask for a zoom call with Dr S. I'm pretty sure he offers them. It's definitely worth a try. Re gluten, I gave it up after my last miscarriage in July on the recommendation of a couple of other docs I saw for second opinions. They said I had an 'inflammatory' profile (asthma, psoriasis, allergies) and it couldn't hurt. They recommended quitting both dairy and gluten but I found dairy too hard to stick to (life without cheese... just... no!) I told Dr S I was doing this and he said it wasn't necessary as I wasn't celiac. So I guess it's up to you? I don't find gluten too tricky to cut out, to be honest. There are lots of free from options now. I also saw a nutritionist who put me on a lot of supplements and made some tweaks to my diet (her name is Melanie Brown and I'd highly recommend her) but I was still drinking wine on weekends and having takeaways on a Friday night!

@rainwillmaketheflowersgrow I'm so sorry you feel overwhelmed after your consultation, but on the positive side, at least you had issues identified. That means you can change things/get on a good treatment plan and hopefully you'll soon be on the road to a healthy pregnancy. It's terrible that your PCOS was missed so many times though!

@Hazlet2 Hope your Humira plan is going okay at ARGC!

Wishing everyone else well xx