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

@DaniMERL I had a chemical last year where I tested Friday evening (I didn't expect to be pg but wanted to be sure so I could have a drink) The next day I sat in the garden trying to relax and rest and look after myself but the fear was already set in and that was day 1! I remember thinking to myself even if this pregnancy goes the distance I will not survive 8/9 months of this crippling fear. It was actually even a bit of a relief when the tests started to fade. The latest pg the fear didn't set in till around 6 weeks, and the baby stopped developing around 6.5. I strongly believe the fear and anxiety are worst when the pregnancy starts to fail, like your body is trying to tell you. I even use it as a symptom now to know if I am going to miscarry. What I am trying to say is don't dread next time, you had anxiety this time, it doesn't mean you will again

@KittyKatSmile enjoy your day off in the lovely weather! I'm glad you are doing ok and on the road to recovery. If you can bear the thought of trying again right now I think that counts for something. I have always tried again straight away after early loses which happened naturally, but I don't know about D+C is there any extra risks of infection etc having sex again too soon? The advice professionally always seems to be to wait but there are so many success stories too of people falling pg next cycle.

@Nixwix, thank you for the kind words. The IVF clinic actually looked at my test results and said they would follow the same protocol because of my NK cells. That's why it was such a blow to lose this latest one because I thought once I finally got pregnant this time, we'd have cracked it. I think it may be to do with my partner's sperm as there were some anomalies but Mr S seemed to change his mind on what it really meant (and when we asked, they wouldn't answer if it was likely to be my NK cells or his sperm that was causing me to miscarry). We didn't really follow up (which is our fault but I was on so many drugs I think we were just trusting in that) and Mr S never mentioned it again in my follow ups. Although the last 2 times I saw him he also stated that my pregnancy was unplanned so I'm not sure how closely he reads his own notes!

We'll go down the IVF route in a few months if we haven't yet had success. I'm pretty old so I want to get this moving. The clinic have said I can do Super O so we'll give that a go.

What are everyone's thoughts on trying again post mc/D&C? I've obviously been googling like mad about people who get pregnant again straight after a miscarriage. Mr S would be pissed off but he's always pissed off with me so I think I can take that risk...

@DaniMERL I think you've done the right thing in stating when you want to see him. I feel the same way. What you could do to avoid the early intralipids is to not test early? It would work out the same as going in later for the intras but without the fear. Appreciate that is theoretical only as the fear stalks us all whatever we do. I personally hate having to test early, I'd much rather just see if my period comes.

Anyway, I'm sending baby dust and grateful thoughts to all of you. It's a beautiful day where I am and I'm not going to work so I'm going to pretend I'm a lady who lunches and go and enjoy my 'day off'. Back to work tomorrow otherwise I'm going to go out of my mind.

Take care lovely ladies. Sorry for the dissertation (this is what happens when you don't go to work!!)

Hi all,
Thanks so much again for lovely messages.
Glad to hear of some success too. I love the updates.
So I finally got a pretty standard response at 5pm today, basically just saying can I go back to see Mr S in 2 weeks. I have replied to say I will if there’s likely to be a change to the programme that needs discussing but if not, I would rather just continue with the plan and not pay out for another consultation. Not sure how that’s going to go down but I feel annoyed everytime I think of the £700+ I’ve spent since December on wasted intralipids. Everyone including my OH tells me to make peace with the money. I know I need to get over it. It’s not the actual money as such, more the feeling of being taken for a ride.
Anyway, I’m doing okay emotionally I guess but The anxiety was quite bad last week and I was only “pregnant” for 3 days. It makes me dread next time even more. Am definitely struggling. It’s coming up to 3 years of this terrible RPL journey and it’s taking Its toll. I know it’s been more for others xx

Also I never welcomed you @UnicornDust17
Happy to find you here! Have you had your anomaly scan yet? All the best! Hugs.

@HappyApple05 omg!!!!! So happy to hear your news! Congratulations! Exciting but I am sure cautious too? How are you feeling and what meds are you taking right now? So you are around 6 weeks! Amazing. Do you have an appointment booked with Dr S or any early scans at your nearest EPU? Sending you love and hugs! 

@Sunshineblonde1 you do have a way with words! :) I also wish I was as good as you but it's a talent not everyone has! I had my dating scan on Friday at the hospital - they did what all hospitals do - was good enough. So broke the news of pregnancy to my dad, in laws and a few close family and friends. Still keeping it hush hush till 20 weeks. And today with Prof at Epsom, which was very very thorough, followed by intras. Definitely pleased that I eventually agreed to stick to my appointment with the Prof. (Pocket feels very empty). Yours is on 27th, good luck! Have your Harmony test results come back? My husband found out the gender from the Prof (apparently he can tell now) but I chose not to know. I am weaning off pred and stopped clexane but been advised to start aspirin. Are you and your partner excited? Sending you lots of luck and hugs.

Hope everyone's weekend was well, anyone planning on doing anything for Easter? Or holidays booked? Xxxx

Welcome @KittyKatSmile to this group of extremely supportive women!
Firstly, I am so sorry that you are going through this tough period in your life. Tougher because you don't know why the miscarriage is happening and it means trying protocols until one works. I also know what you mean by Dr S being a tad too blunt - I find it quite stressful when he talks in a rushed/pushy manner and I find it difficult to ask the questions I had thought of asking but feel nervous to do so.
I don't know how much the protocol under Dr S is costing you but I think it would be worth considering a second opinion on your case - I think Dr S solely focuses on the NK cell theory, when the issue could be sth else? Also I believe you went to the IVF clinic but didn't go through with IVF, you could have a chat and see if that's an option? And while all this is happening, please do look after yourself! You are the most important thing and I pray and hope you feel okay more than anything else. Pls keep us informed and hugs to you.

@DaniMERL I am so sorry. I don't know much about pregnancy tests, I only used Clear Blue. It's very frustrating and your post really did break my heart but you are also being very positive, strong and practical about this all. Do you think you could have a chat with Dr S about a different protocol or get a second opinion from someone else? i really don't know if the intras work, at this stage, I am trying whatever they say works, but I am really feeling doubtful, it's so expensive (more than other places) and I don't know why I have this feeling that it's a money generating product. I hope Dr S did have a proper chat with you about a structured plan moving forward and then maybe get a second opinion too. Sending you hugs and I hope this phase is over soon and you can try soon too and find a programme better suited for you.

@Chickjen completely agree with what you said in the last post, when we are 50, I want to say that I have tried as opposed to I didn't even give it a shot. :)

This post is now too long!

@DaniMERL euch its so frustrating :( I think next time you can consider the option of not having the intras until Day 6 or Day 7. Just don't tell the nurses or Mr S. I couldn't get to Epson for intras until a week after BFP and that was that! I wonder whether Mr S can advise whether there are any further tests that might be available to see if theres anything underlying the chemicals like chickjen mentioned? I am sorry you are having to go through this hun. It's so mentally and physcially tough. Let us know what happens next?

@KittyKatSmile wishing you the best for today and that you have a good recovery.

@Nixwix all the best for the nuchals!!!!

@HappyApple05 hope your doing well my dear and the Fragmin shots are going ok. How long do you have to take them for?

Love and hugs to all

@DaniMERL for what it's worth I think you did the right thing, you made the only decisions you could based on the facts at the time and gave everything you could to this pregnancy. I really hope MrS comes through with some good advice and a plan tomorrow. Unfortunately you are probably right that it will mean spending more money 😥 the way I try and think of it is when I am 50 and the chance has gone, would I miss the £Xs spent or at least know I tried everything I could. But the cost is another kick in an already cruel situation. Hope you are doing ok 💜

@DaniMERL, I don't know what to say hon. Have you started bleeding then? Make sure you ask the nurses on the phone tomorrow what the next steps are so that you have got the start of a plan. That's the only way I can ever keep going on this particularly arduous journey we all find ourselves on. Keep the faith and remember that we're all with you and here for you x

So second failure on the programme and I’m confused as to what will happen next. It’s easy for Mr S to just put this down to chromosomal issues with no solid evidence. Therefore justification for spending more money

Hi all, thank you so much, your kind words mean a lot. It’s been devastating. The expectations were pretty high I guess. Feels totally ridiculous considering my period was only due today.
So I tested from 9dpo right through to today, all FMU. The lines progressed as expected to day 11. I took a test on day 12 (day of Intralipids) and it was a little fainter and I really panicked as I had to set off at about 7.30am to get to the 10am appointment. I didn’t know what to do. I took a second test and I’m not kidding, it was definitely darker - darker than the previous test and also than day 11. I felt completely reassured and figured the first test was a bit of a dud. It made the morning and journey to Epsom incredibly strsssful but I felt certain I was doing the right thing.
Then yesterday it was very light again- as light as day 9. I wondered if it may be something to do with the Intralipids but deep down I knew things weren’t right.
Today was confirmation for me I think. Fainter again with FMU. The irony is that a normal person wouldn’t have even tested yet. I would have just got a negative on a normal sensistivity test by now. So I’ve also blown all that money about 7 FRERs too.
Just gutted but trying to think positively. Still on the meds but I only took 4 pred today with a view to weaning off and I’m sure if things were going to work out by some sort of miracle, the slightly lower dose wouldn’t do any harm.

@DaniMERL I'm so sorry to hear that. Just try to stay calm and positive this weekend. I know the waiting is awful. Let us know. Thinking of you xx

@chickjen good point! I freaked out one day when I tested and the line was real faint. It was mid morning and i’d drunk loads. I left it a few days and tested again on FReR and it was back again. I stopped testing after that fright.

Oh @DaniMERL 💔 is there no hope? How do you feel in yourself? This is probably a ridiculous question as we are all serial testers, but did you drink more that could be diluting the result?
I can't imagine how frustrating that must feel, my heart breaks reading your post 😥
This is probably too soon to think about, but one of the blood test results MrS said can cause very early loss, it is called 'TNF Alpha-TH1/TH2 Cytokine ratio' I'm sure you would have had the test already but maybe it was borderline or has changed? Might be an avenue for MrS to double check?
Sending fighting spirit vibes your way 💪

Oh @daniMERL, I’m so sorry to hear that !!!🙁 is it fading on the FRER? Mine faded on a cheapo one.
They do seem keep to get us in for intras ASAP don’t they. I think I went on day 6 and got told off.

So it looks as though I am having a chemical pregnancy. The lines started fading dramatically yesterday. It’s been a really hard week and considering this happened before I feel annoyed that I paid for the Intralipid so early. I’d still be within 7 days next week and would have known by now that it probably wouldn’t have been worth it. The nurses are speaking to Mr s about it on Monday hopefully.

@KittyKatSmile you really made me chuckle over your comment on the sinister Mr S 🤣. I have to admit I was slightly perturbed by his manic smile [big grin] and I swear he doesn’t he even listen half the time 😂 however, after learning about how hard he works (often pulling night shifts and emergency surgery before seeing us at his private clinic in between flying around the world to speak at conferences and running his Harley st clinic) I found a renewed feeling of gratitude that he has bought this protocol to the UK and was able to pick up some fairly basic issues I had which just seemed to be beyond my NHS gyno 🙄. I truly believe I wouldn’t be this far without him and I have everything crossed that the same will apply to you now that you’ve cracked the whip on them and they finally seem to be responding 😘He’s not one for tea and sympathy but he is a symbol of hope. I hope he gives you the treatment you deserve moving forward.
All the very best for Monday hun, make sure you slather yourself in no holds barred TLC for a minimum of two weeks after 💆‍♀️😘 Eat and drink whatever your body wants! I took a holiday! Take some time to heal. Let us know that all goes well. Like @happyapple05 I felt like a dark menacing cloud had lifted after my D+C last year. You can then begin to move on.

Awww @chickjen and @HappyApple05 you sweet things. You made my day!! 🥰 I tend to warble but I’m so glad we can all be of support to one another and keep that positivity going. You’ve all helped me tremendously too. 💐

P.s. @HappyApple05 your nausea is right on track and a good sign 🤩 I’m literally doubling in size by day at the moment 🤪 I’m going to copy you and start swimming too. What’s the next step for you, do you have an EPU scan?

Have a lovely weekend all ☺️

@HappyApple05 so glad you have found your Zen again, that is your strength 💪

@KittyKatSmile you are so strong! I would totally be having a wine if I was you, so pleased you have a plan now to focus on while you deal with a horrid time on Monday 😩 I hope MrS is too busy spending our money to be reading our posts, I have to say he is a dream compared to the horrid leachy consultant I saw on the NHS, although the thought of him doing the scan is too awful to contemplate 😱

I have actually made plans to see some family next weekend who I haven't spoken to in a few years, it is the first claw back into unisolating myself and it is only due to the strength I have pulled from all of you

@Sunshineblonde1 you are so good with words, I wish I could write half as well as you! 💌

@HappyApple05 I'm so happy for you, congratulations! And very inspired by your story. I did go back to see Mr S after 4 months on the steroids; looking back I don't know why I didn't make the point that I wasn't getting pregnant and could we try something else?!

@chickjen I think we all go over everything until we are driven mad. How are you feeling now lovely?

The clinic called me today (I think they were getting worried by the tone of my emails "I don't think you've given me enough information to make an informed decision") and I've got a plan now. They have also said that Mr S won't want me to wait so he'll fit me in somewhere. At the moment I never want to see his slightly sinister face again but give me a fortnight and I'll be back....! (We don't think he reads these posts do we?!)

D&C on Monday. Am now just fighting the urge to drink all the wine in the house. I don't think that's going to help so I'll resist.

Ladies, thank you all once again. I'm so pleased to have found you and I'm wishing you all so much luck and good wishes x

Don’t underestimate yourself @chickjen your incredibly strong and with an analytical mind 😘💐 Nothing wrong with weighing everything up and giving it all a good mull over - that’s how the best decisions are made 😋 xx

Wow @HappyApple05 that is such good news, if the dates on the test match your dates, or even a little ahead by the sound of it, then all is on track so far and can only improve by starting the protocol.

@KittyKatSmile I am just a complete wimp that over thinks everything and then bottles it up! Thank God for the lovely calm practical ladies on here 😀