Immune/NK issues - aka Pred Thread no.20!

Hi Harriet,

It's in subsaharan Africa so pretty exciting! Should find out about visas shortly. Weirdly, my ovulation usually happens on the same day every month, so Every 30-31 days, but AF is strange; usually happens every 35 days and some months not at all yet I still ovulate! My endocrinologist is aware and doesn't think it's a problem. So although my last AF was a bit early, it's hard to say whether it will affect my O day. Have you had a test for low progesterone? Taking meds from before BFP sounds right. My endo advised me to take Pred all the time cos he doesn't think that would have time to kick in if I wait for my BFP. I suppose progesterone may be faster to get working.

Hope you're all ok. How are you Starshine? Fingers crossed Seeking and JustLa for your scans today xx

Thanks Harriet!! Just waiting now ....

I was advised to take it from bfp but this cycle I took from ovulation to 10dpo to let it come down enough to bring on af, if it was gonna happen. But it didn't and got a bfp at 16dpo, so started again then.

Hi all, gosh I've missed loads haven't I?! I didn't even get notifications for most of these!

All good thanks and feeling for you all. Welcome newbies and retuning posters, sorry to hear about your losses along the way. This is a really super thread and I'm looking forward to seeing some BFPs and 12 week scan worry respite moments!

Harriet- thanks for the info on delayed O days. Still getting negative OPKs which is good because now I don't want it to happen early cos I should get to see DP on Thurs. Going to try to turn his business trip into a bit of a holiday. Your message about 3dpo being too early to symptom spot made me laugh; we all know it's inevitable anyway! Also, was interested in the debate about saving up sperm vs regular ejaculation aiding regeneration and creating healthy sperm...I don't buy the former, unless the guys sperm count is low.

Starshine and Rosa, sorry to hear your fears about being too old. I agree with Harriet that neither of you are. NHS-funded IVF is available up until 42 (which is presumably a conservative cutoff). It was raised from 39 a few years ago and they would def not be wasting money on it if they thought 42 was too old. You don't have to make any decisions right now about stopping, but sometimes I do also wonder whether there's an easier way to approach this all. I have wondered if going back to the old fashioned method sex a few times every week would stop the monthly OPK faffing and the relentless dpo counting. But then I suppose it could take longer to get pregnant.

JustLa, I feel for you. if you get the scan, the midwives will be able to interpret it anyway, it doesn't matter that Dr S can't comment. Don't worry about sharing pregnancy updates; it's what we are all here for. We've all been there and been disappointed and it's important that you have people to bounce off when things are good but you can't quite trust in that yet. I am dying to be pregnant again but I am also terrified that I will be a nervous wreck for nine months...it is not easy for you!

Sorry for your losses Tee, I hope you have a successful journey through Dr Shehata protocol. This forum was a life saver for me when ttc DD, I hope you find invaluable experience and support form these wonderful ladies.

Rosa, I know how you feel. I made the decision that I could go through one more miscarriage but beyond that is my end point. We are SO lucky to have our little miracles, they are more than enough.

Just I have a scan on Monday too... NHS, I had loads with DD, my view was that it reassured me, didn't risk the pregnancy or change the outcome so I didn't really matter if Mr Shehata recommended them. This pregnancy I don't really want all the scans Mr Shehata recommends, just one Monday and one at 12 weeks. It's not going to change the outcome either way so I don't really see the point.

The NHS were fairly mixed in their opinion of Mr Shehata and his treatment plan. I was consultant led and she was pretty against the use of steroids, but the midwives were all quite open to hearing more etc.
This time round, I've managed to get my steroids from my gp!

These are good points, I'm wondering how nhs will react if/when I fall pregnant and am on this 'plan', hopefully it means Consultant monitoring through pregnancy and labour, Dr S generally signs off at 20 weeks I think?
I heard back from the clinic again this morning. My thyroid has come back on the high side, so he's prescribed Thyroxine. Annoyingly I'm on holiday until next weekend, so won't be able to start the medication for at least another week. I'm so impatient!! He wants my level to half to be ideal for pregnancy. I hope he won't suggest holding off trying again this month! Only received a brief email as I'm out signal much of the time up here.

Thanks - good to know! I assume by the time I'm preg and on all the protocol I'll be considered 'high risk' even tho I only had 2 miscarriages... although I won't see midwife to book in until I see a heartbeat, I've made and cancelled enough appointments :(

Aw great, thx :)
Glad your acupuncture is working. The lady I went to see gave me to nutrition advice but didn't really tell me about what her acupuncture would help with, plus her equipment looked like it had seen better days, so I retreated lol.

Sorry Luna, I didn't answer your question. As far as I know, you get access to more frequent scans once you've had 3 or more MC's. I went to gp with a few pains and he booked me straight in, so I'm enjoying SOMETHING for free at least 😂
I'm sure the midwife told me a while back that once considered high risk, you are entiltled to a scan every 2 weeks on NHS, but haven't checked it out yet

Same as Luna justla- the fact that you're pregnant is really fantastic news and I think your reaction isn't completely normal for all that we have been through. Glad you can share your storey with us and hopefully when we all get there too- you'll ben comforting us and heavily pregnant x

I find the fact you're pregnant very comforting :)) and also totally normal that you're freaking!

Hi Luna, I had a 7 week scan which looked good, but am so so aware than anything could happen at this stage. Chromosomal stuff or auto immunish stuff (hopefully we have that under control though) or anything else. I'm not feeling lucky although, I did find a 4 leaf clover at 5 weeks so maybe 🍀

Thanks Star :) I hope I don't upset anyone by sharing my pregnancy worries in here, I don't want to seem ungrateful... just super worried about things that could go wrong at the mo.

Harriet, I totally didn't have my hopes up and got lucky! There's always a good chance it will be your month. When you've experienced only bad results, it's difficult to imagine good stuff can happen, so I've had to say sayonara to 'instinct' as it can be too jaded by the past.

xxx

Hi all,

Really hope the scan goes ok justla! You're doing so well!

Welcome tee. Completely understand what you mean about 'when to stop'. It's so hard- I am constantly concerned about whether I am spending all this time trying to for something that just isn't meant to be and I don't want to look back in years to come and think about my DS youngest years, shaded with different miscarriages- already there are so many lovely photos of us as a family, and when I look at them I have a whisper in my head- yes was so many weeks pregnant then or just miscarried, again. It really is tough. Was out last night with two friends, one spent a long time talking about her youngest and how tired she is and how she is far too old- she won't be having any more she told me as she is too old- she knows what we have been through and what we are still going through and that we are the same age😠

I have just re-started acupuncture again rosa- apart from anything else, it really is relaxing and almost like counselling too. My therapist thinks my temp is a little low and wants me to eat more rich protein foods- esp recommended liver- I am not a meat person!!! Promptly went off to Nando's for lunch for their chicken livers and now I feel physically sick! Have never paid for a meal- having ordered something I hate! Quite funny when you think about it.

Harriet- how are you coping in this tww? Hope the superovulation works.

Any updates on the ovulation poppy?

So I am booke din for my scan next thurs with mr s to look at ovulation and had my day 3 bloods yesterday- so willsee what they tell us! Hopefully good news!!

Now off to pick a kitchen! Have a good rest of the Saturday ladies

Wow so this is the Big scan that will change everything hey JustLa? 8 weeks now?

So is NHS running their own course of early regular scanning too; in addition to Mr S?

Hi all,

Welcome Tee 😊 Sorry you've been through all that nastiness, we all understand in here x
Mr S has so many success stories, you're in good hands.

Glad you found us again Rosa :) Depending on how far you want to take it, could you use ivf to select a genetically stable embryo? I've heard of that being an option but not confirmed it- maybe worth asking about... sorry if it's a flop but just a thought.
Has anyone else in here heard of that?
And congrats on your DS ❤️

Harriet, how are you holding up? Will you be testing in around a week from now? Everything crossed for you 🤞🏻

Luna, the waiting to try is a ball ache! You can literally hear the clock ticking, it will be so worth it when you succeed though 🌈

Poppy, Star and everyone else, hope you are all doing ok? ⭐️

I'm still completely bonkers- meds, hormones, extra hormones, stress and feeling of impending doom are my life at the mo. NHS scan on Monday. Mr S told me he's a busy man and won't be able to comment if I have any concerns over an NHS scan so doesn't fully recommend it, but I'm pretty sure I'm going to take advantage of a free one anyway. My negative-Nancy head thinks, I want to know sooner rather than later if history is going to repeat itself.

Song of the moment for me- Madge, 'time goes by... so slowly' wish I could fast forward a good few months! I'm sure most of you feel the same 😵

Xxx

Thanks Luna, you're right - and my DS is so enough .. I remember before him wondering why others would try again after all this. It's more for him, but also that endless curiosity or what another amazing unique baby would be like .. More to love and all that! But if we don't and/or it doesn't happen I'm feeling so lucky to have my DS. Just wish for all our sakes we knew more about all this recurrent miscarriage nightmare so we could suffer less, and ideally not at all.

Hi Harriet.. Yes, I've thought about a deadline. I think I will just know.. I strongly expect if I did conceive and have another miscarriage - especially one needing D&C again .. Would be my 4th of that type, then I would just need to stop for my own physical and mental health. It just takes it toll and it's not fair on me, DH or DS. What will be will be! But to answer your question on superovulation, it was only the second round .. Louise who used to support Mr S thinks I may have conceived before the trigger too so may not have needed it .. But it had been 9 months of lots of drugs and no luck so I am glad we tried it. We were going to give up the month after. Funny how things usually work out. Looking forward to hearing more success stories this Summer :) xx

Hi Rosa, I'm sorry you've had such a rotten time... and that medically it was such a hassle :( I don't even want to think about loosing one because of bad luck, on top of the other stuff - so I get what you mean

But in amongst the heartache you have had success with Dr S - that's wonderful!

I don't know when the 'give up' point is. I suppose you know when you reach it; it'll be as strong as the need we currently have to keep trying... so I think you've not thrown in the towel yet! Especially as you've had success with the Shahata protocol

Yes Tee - summer babies for us - I'm already planning how much of a humble, sensitive and discrete pregnant person I will be...

Thanks too for helping me find.. Especially as I'm thinking of joining on the journey.. Just don't know if can do all again with Mr S as live up north and got the intralipids via healthcare at home before .. I could get pred up here but as was on complex plan worried wouldn't be enough.

Before I give my stats just want to say a massive congrats to Sunny, Seeking and P .. So lovely to hear your news and can't quite get over how much time must have passed!! Also big hi to everyone else - wishing you all the luck in the world.
Me - 41!! DH - 38
TTC since 2011/12.
3 miscarriages between Aug 2013 and July this year. 11 weeks (MMC, heart beat seen at 7 weeks, D&C), 6 weeks (natural MC), 8 weeks (MMC, heat beat seen at 7).
DS born 2015 then another MMC this Feb- only took pred but tests showed nothing would have helped as wasn't autoimmune, just wasn't meant to be. Can't decide if I feel better about that or worse... As maybe it's an age thing :(

When I saw Mr S I was told I have a high TNF Alpha, a high natural killer cell count and very high activity as well as cytotoxicity assay. I also have high thyroid antibodies and a high TSH but that's now dropped to correct levels as taking 50mg of thyroxine... Actually 75mg since having my DS as it got worse.
I was on the complex treatment programme which is asprin, vits, pred, cyclogest and intralipids from BFP- but had to take Humira injections first. I had an allergy to Humira and side effects to hydroxychloroquine..so stopped both.

I conceived my DS after superovulation but wonder if should try accu. As I said before though I just wonder if I should give up.. Quite sure I've had more than enough heartache for one lifetime and worried I'm too old and shattered. But just can't stop thinking about another baby... What to do.

Thanks all for the comments at the end of the last thread :) xx

Oh wow, cycle twin in every way! I'm expecting ovulation around 11th August. Can't believe I've stumbled across a group totally in the same boat. FX for lovely late Spring/early Summer babies! x

Hiya Tee! Welcome! Sorry for your losses:(

I too haven't started yet (complex without injections for me too)... hoping it'll all be worth it - starting mid-August as hubby away at mo!

Hi ladies!
So glad I've found you, can I join?
I've been kicking about MN for 18 months. Have a DS who is 5 in September. Started TTC #2 back in December 2015. x2 MCs (both early but 2nd 'missed') and 19 months later - still no joy. Signed up with Dr S last month and got results yesterday indicating slightly higher levels of 'activated' NK cells than normal range. Have been put on complex plan without injections. Feeling very optimistic and grateful to have a plan of attack. Only CD20 so another 3 weeks until I kick off with the steroids. Was told not to 'try' this month which I found difficult!
Have many on this thread had success with Dr S, or mostly still trying? x

Chin up Harriet - it'll be you soon!

I often find the hardest moments are the ones I didn't expect; like the day I was miscarrying my 2nd at work was also the day a colleague 'came out' as 12-weeks pregnant... she was so happy and sweet and innocent! I felt like clobbering her and congratulating her at the same time