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

Hi all,
Going to join in here although been merrily chatting away on thread 21 recently!

Quick history:
5 yr old DD born in 2013, no issues
Started TTC for no 2 in 2016. 12 wk scan revealed no heartbeat. Had D&C twice.
3 more early losses between then and Summer 2018. Had surgery each time. All NHS tests have revealed nothing except for 1 chromosomal defect (only able to do genetic testing for 1 of my losses so don’t know about others).
Saw Mr S and put on High plan in July 2018.
Got BFP in Dec 2018 on cycle 5.
6 week scan on 2 Jan revealed nothing at all. No evidence of a baby and started bleeding 2 days later.
Now been moved to complex plan and will start superOvulation but have to wait until March for the Hydroxy to take effect.

Sooooo... feeling positive but super frustrated that we now have to wait and all I’m reading is loads of BFP news which is fantastic and so happy for people but also feeling so left behind and like I will be the only person this doesn’t work for!

Hey @DaniMERL glad you found your way over 😃 we all know a BFP doesn’t necessarily mean it’ll go to term, so don’t feel left behind. It’ll happen for everyone in one way or another in its own time. What we want is the good, healthy sticky ones, it just seems we are a group have to suffer losses on the journey to that. We are all determined, strong ladies on a mission. There is no set path. Sometimes it’s good to have a little ‘forced’ break from TTC (I.e. with the hydroxy break). It’s easy to lose positivity in the process. Hopefully come March you body will be well rested and up for the next round. Sending hugs 💐 x

Hey @Widdendream77 and a big fat Pred infused WELCOME!! You’ve come to the right place here 😄 And huge congratulations on your BFP! That’s awesome news. Everything crossed for this little bean. It’s all a bit surreal isn’t it! I’ve just started the Pred two days ago though have been taking the cyclogest since ovulation. I’ve found they give me wind eeks!!! Not good. But hopefully it’ll all be worth it. Am going to take another pregnancy test in a few days as can’t quite believe it. I’m so glad you have joined in the thread and look forward to hearing your updates. Best of luck starting the Pred x

@Megan234 come join x

Good morning lovelies..and a warm welcome to the newbies...

@Widdendream77 - congrats on the BFP and welcome to the pred protocol, we moon faces will rock

@DaniMERL, a break is always good, it seems like a long wait but it's just a cycle or max 2 to go until March. Stay back and enjoy this time as you won't find it from March onwards.. I stayed away from TTC since March 2018 (my last loss) and started in Dec 2018 and looking forward to the BFP magic

@Sunshineblonde1, unfortunately I wasn't suggested any way / method to take pred by the doc. I gulp those boys down after my breakfast. I think I got it from the older threads that some people space it out to reduce nasty side effects. I will defo miss to take part of it if I follow that way with full time work + kid no 1. I mentioned it as you were a bit reluctant to take it, in case you'd prefer it that way. Something is wrong with the coffee emoji, it doesn't work as expected Lovely thanks for the bikky, I'd saved it for my evening tea

Yes here too-passing wind from pred.. I get heartburn as well, so having it with antacid ranitidine. I guess you guys would have been prescribed omneprazole.

Lots of babydust and sticky vibes to everyone

XOXOXO
Happy Apple
(My son says X-kisses and O-hugs)

Awww @HappyHappy05 that’s so cute, how old is your son? And I’m so glad I’m not the only one with the windy pops! Wasn’t sure if it was the Pred or the Cyclogest (or the cats at first 😂) so perhaps it’s the Pred. I’m getting the major sweats too 🤪. I’m sticky to gulping the feckers down in one so it’s out the way. The earlier we take it the less impact on sleep.

Happy weekend everyone xoxo

Hi all,
Can I join? I’ve been chatting to ladies on thread 21 recently!
@sunshineblone1 thank you for adding me
Quick history:
4 miscarriages.
I’ve been with Mr S sine June18 and the last miscarriage was under his care. The pregnancy was tested for chromosomal and genetic abnormalities but all came back normal (sorry not so positive story). Now he put me on pred as well as hydroxychloroquine. I found out last Wednesday that I’m pregnant, but it was very unexpected because my hCG levels were tested 8 dpo and it was negative and I was 100% sure that I wasn't pregnant.
I’ve been taking pred for 4 days now and the only side effect is insomnia. I’m having intralipids on Monday if the pregnancy test is still positive. Sending lots of baby dust to everyone xx

@Sunshineblonde1 @HappyApple05
Thank you for your words of comfort and the logical line of reasoning. I have to say I am so glad I wrote here. You guys are right, gotta have faith and do my best... @Sunshineblonde1 How are you getting on? Good to know your Dr is supportive of you being with Dr S in parallel. I am not telling my Dr cause I fear he will care less after that. Haha.
And @HappyApple05 Happy boinking! Fun times 😉

@Sunshineblonde1 Why IVF- we were trying naturally after the removal of my left tube due to the ectopic in April 18 and wasn't get the BFP. I knew sth wasn't right cause both the times I was pg naturally, they were on first tries. Upon further testing post surgery I found out I developed the thyroid anti bodies. I was still told that I could conceive naturally by other doctors even though I had one tube and the ab. Tbh I wasn't getting the right advice, I was also out of UK then. Not many are aware of reproductive immunology. My DH and I both wanted a baby so we thought let's try till Dec, if nth then, IVF it is in the new year. The ivf dr I am with now at CRGH, is brilliant, tested everything and immediately put me on levothyroxine. And a plan. On speaking to Dr S recently he assured me I was on the right track, with added amendments but he also said he wished he saw me earlier, would have done some things differently. But here I am and can't really think in retrospect so going forward keeping fingers crossed and having faith!

@DaniMERL Welcome! Please don't lose hope! The bright side is you can get pregnant, it's now about making healthy babies and making them stick. Please keep trying. Are you on supplements? The others are right, the process after the BFP is just as terrifying.

@Widdendream77 @Megan234 welcome and congrats on the BFP, nice to know we are on the pred game together. I haven't been feeling the insomnia but my DH tells me my face is a bit rounder and I do feel hungry a lot!

Lots of love to all

Netwix, I had an ectopic last March. We didn’t try tried for the rest of the year as we were having referrals and trying to get answers. We started our Shehata plan in December and we fell pregnanct this month, we are ‘lucky’ to get pregnancy so quickly. We’ve been trying for over 5 years and for 3 we were infertile then all of a sudden we get pregnant and lost every few months...

I went for an early scan yesterday should be nearly 5 weeks, they couldn’t see anything- anywhere, not even a sack, so they suspect another ectopic...my levels are rising as they should and I have morning sickness, sore boobs, no pain, no bleeding etc, as I always do. What’s next?! I’ve now had 2 ectopic and 4 losses. I kept my tube last time, but what’s the point in keeping it if it’s so damaged! This will happen time and time again, I’m 33! I’ve never had the other tube checked either, I asked doctors and consultants and no one thought it necessary, maybe they will now.

My husbands sperm wasn’t great when we had the sperm comet test done, so now trying to sort the next plan, is ivf as option. It just feels that Shehatas plan isn’t going to have a chance to work if it never makes it to my uterus... anyways, hope you’re all ok and have a good weekend. I woke feeling very flat and have the mother in law visiting so trying to put on a smile. No one knows what’s happening, we don’t bother telling people any more.

Also I emailed Shehatas office last week they aren’t very good at responding, I’ve stopped all vitamins so I’m not encouraging the ectopic to progress, but should I cold turkey the pred or ween it down? I’ve been on it now for 22 days, not too long, does anyone know?

Sorry this is long! X

DaniMERL I did think in the last thread everyone had positives. It does hurt I’m sorry you felt that. But as you know that doesn’t always lead to a healthy baby. I have no living children, and my 6th pregnancy is ectopic, again....! Feeling tired of the journey and the cost of travelling to london for treatment etc, very disheartened. But wishing everyone else well, hope you get a positive soon and feel the hope again xx

@LKM1 hey hunni so sorry you are going through the mill at the moment. Big love and hugs. Are you definitely sure its an ectopic? Have you given Dr Shehata's reception a call and left a message, the nurses should ring back within 24 hours. I too find responses to emails can be slower. I am sorry this is turning into a shit journey, but I have great hope for you. We will all definitely get there one way or another. Whether its Dr S, IVF or even Donor! The blessing is, you are not at the end of the road in the slightest. There are still options!! If its any consolation my friend TTC for 5 years to no avail, had 2 x IVF which failed, got pregnant suddenly naturally that miscarried but now she is pregnant and due in a few months against all odds! I wouldnt personally wean off the Pred until I definitely knew it was ectopic? I think it's anything over 10 -14 days and you need to wean off but i would wait to see what the nurses say. My other half's sperm needed improving too, he's on the anti-oxidants, the urine analysis came back normal. Keep strong x

@LKM1 hi love, welcome to this thread and sorry you went through ectopic. I know what it's like to go through it. Worst thing was i didn't even know I was pg as I hadn't missed my monthly. I kept having stabbing pains and had to be rushed to hospital at 2 am. I was apparently 6 weeks but according to my calculation I think about 8. I had emergency surgery and my world turned upside down. Esp cause the ectopic happened within 4 months of my MMC. The tube had ruptured and I had severe internal bleeding. In hindsight I was too naive to think it was some sort of gas pain. Last year I had the HSG done to see if my other tube is working fine but the thing with tubes is (according to my Dr) the issues could be very microscopic.

Anyway, I think 5 weeks is a bit early for detecting a sac no? I would assume 6 weeks... either way, you should really insist on being monitored very closely by your doctor or the EPU. Have you had bloods taken to monitor your HCG? And about pred - you are supposed to wean off, again ask your doc..

With ivf the risk of ectopic is slightly higher but it's also very unlikely as they put the embryo in the uterus directly. In fact I have been having sharp twinges from my functioning tube side so my clinic called me in to check if everything is ok. But it's way too early... so I'm a bit nervous too. Don't feel disheartened, you are 33 and young!

Yes my ectopic was 5 months after a 10 week mmc.but I sensed something wasn’t right, I actually dreamt it to do went to the doctor and then for an early scan, I had a 3 cm mass in my right tube. They said I was 8 weeks, it didn’t add up at all with my dates, I think I was 6, but maybe it was twins, I’ve lost twins before. It was a very bad couple of years, I was so hopeful after such a long time off to heal that this year would start well, so meh that it’s started like this! Ido feel angry after an ectopic to not have had tubes tested. We had been trying for 3 years and were about to be referred for infertility but then we got pregnant and needed to have 3 losses etc etc, you all know the drill from there

My levels were 2300 yesterday, because of the ectopic my doctor wanted bloods straight away, they went from 42-530-2300 and when they’re that high they expect to see something in the scan. There was nothing?! That’s a new one for me... something else to add to the tick list!

Sunshineblonde1 yes my husbands urine test was fine and he has a scrotum scan, everything was normal. There’s were a lot of damaged sperm, Shehata said that if the red damaged ones made it to the egg I would miscarry, we have an awful lot of hurdles! Getting pregnant, it being in the right place, a strong sperm, a good egg, nk cells... it’s quite over whelming!!

I’ve stolled taking my blood thinners and vitamins, progesterone because they can encourage the actooic to grow, where my body might dissolve t if it’s not being encouraged to do otherwise, hard decision to make.x

Nixwix is the chance of ectopic with ivf higher than the natural risk I have now? Having one ectopic means you have a 15% chance of it happening again. Now I’ve had another I believe it’s higher again!!x

@LKM1 I feel your history and mine are very similar! Don't feel angry about not getting HSG because that wouldn't have changed much.

My doctor said ectopic pregnancy in ivf in general to all is slightly higher (only by 2%) in the sense the tube can pick the embryo up. However I think in your case, since you are bypassing your tubes entirely that's causing the implantation there to begin, chance of your tube picking up is as low as for anyone else if that makes sense? Same applies to me. But I have also learnt to live with the idea that no matter what the odds are, just be prepared for it. And take early measures when possible.

You are so right, as if getting pregnant is not hard enough, there are these next few steps to unlock.

Oh another thing about Dr S not responding, contact his office and really plead with them, Lorna or Sara, to arrange the appointment and the fact that you are at risk of ectopic. That might raise a flag as an emergency situation. And call everyday if you can!

@LKM1 and yes please stay strong! Your health comes first now. There are success stories out there with histories like ours. So as long as you are determined, I am hopeful you will soon see results! Lots of love

@Nixwix great words of advice hunni so glad you joined the thread and thank you for sharing your story. Sorry to hear it has been a roller coaster journey so far, you are in good company here, who knew pregnancy could be so intricately challenging!! And kudos to all for being so proactive in searching for answers. I am so glad I went straight to Dr S after my 2nd MC that's for sure. I really do feel very positive for us all though, one way or another we will get there. It sounds like you are in excellent hands at the CRGH and Dr S.

I am feeling ok, sweaty and windy but ok lol! Did another test today and all is still well so going ahead with the intralipids on Tuesday, then the next step will be the 6 week scan I guess. Everything crossed for us. Hope your next test goes well too lovely x

Hi ladies, thanks for the super welcome. I’m already feeling hungry😆, here’s some cake to go with the cake and biscuits🧁🍰🥮. It’s good to have others who are in the same boat. @Danimerl I’m sorry it’s getting you down, I felt the same when I’d had to stop ttc for all the testing and then nothing for 6 cycles when we did get the go ahead and with the ticking of the bloody clock all the time. My dd was born in 2013 and we started ttc number two late 2015- snap! It must be so hard when you take all the meds and still mc, hope this next protocol is the one for you for take home baby. @LKM1 big hugs, I hope it is too early for seeing the sac but know that bloody feeling in the pit of the stomach when the early scan isn’t right, stay strong and everything crossed. As for me, I’m glad you’ve mentioned the wind issue- I hadn’t twigged until I read your posts🥴, I have had red spotting today on wiping mainly this am and I’m just so hoping it’s the cyclogest irritating things. Have any of you experienced this?? X

Coffee and biscuits🤦‍♀️

@Nixwix thank you for the welcome 😊 I have been eating the whole day today and I can’t stop it. No more cakes for me tomorrow otherwise I will be the size of a house soon 😜
@Widdendreams77 It might be implantation bleeding? Cyclogest should prevent bleedings
@LKM1 Sending big hugs, we all know how you feel, stay positive. There is still hope because they haven’t confirmed that it is definitely ectopic and it’s too early to see anything
X

Oh phew am so glad am not the only one eating lots!! I’ve eaten non stop today too 😳!
@Widdendreams77 are you inserting the cyclogest front or back? I’ve heard up the front can cause spotting due to irritation. I’m doing up the back but I think that’s adding to the wind problem 🤭.
I have to say any joy and positive feelings I have are peppered with anxiety and dread that it’s iust going to end up like the last two. It’s such a hard feeling to shift isn’t it - I wish I had a crystal ball and could go forward in time and skip all this hard stuff 😕 x

Oh I'm not the only one either! I ate soooo much for dinner too and felt so bloated!!!! Regret it completely. Today I'm going to eat healthy 🤣 (but I'd love some cake too 🙊)

Same here @Sunshineblonde1 i'm just as worried, I have blood tests again on Monday so feeling nervous of getting some sort of negative news soon! So if you find that crystal ball, please pass it to me after!

Were you all prescribed Cyclogest by Dr? I'm on Crinone (progesterone in oil) and it's not too bad, slightl vaginal irritation.

How's everyone's weekend been? Happy Sunday!

@Sunshineblone1 How are you feeling? I’m full of cold and runny nose, awful and the wind is definitely from cyclogest, I’m not sure how my DH still likes me 🤣
BTW with my last pregnancy the nurses at Mr S clinic suggested the first scan at 7 weeks not 6 as it is too early to see anything.
@Nixwix I’m the same full of worries and I’m dreading the next few weeks in case it’s bad news again. X

@Megan234 @Nixwix and all you lovelies! Well it’s safe to say I think we are all nervous! Passing the crystal ball around like a hot potato 🥔 everything crossed for us all. Like you Megan I have a cold and runny nose so am popping paracetamols on top of everything else 🤪 I’m finding it harder to get to sleep too so may try to take the Pred even earlier to see if it makes a difference?

@Nixwix yes that’s right, those under Dr S’s plan have cyclogest prescribed. I had no idea there was such a thing as a progesterone oil! I’m certainly learning so much on this thread! So after Monday’s blood tests what are the next steps for you?

@Megan234 good luck for intras tomorrow! X

@Sunshineblond1 thank you lovely, good luck to you on Tuesday x