Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

Oh just saw the useful post from Kakaboo! Sorry lovely, you’re more familiar with it than I realised! Lol 😘

I don’t know what’s happened but I’ve lost all access to the group on facebook, it’s all disappeared. I’m not very good with it, so maybe it’s there somewhere?

Or is something quirky going on with FB?

Hi everyone, how is everyone doing? I'm afraid I'm not on the Facebook group Pheobe but I would like to join if it's still possible?

I had my 8 week scan today and all went well. Measuring 8 weeks + 1, which is exactly where I should be. Heartbeat 152bpm. I feel like I can't relax yet though as we lost our last pregnancy after a great 8-week scan. But this time I'm taking the pred and heparin too, so I'm hoping that will make this different.

It's so hard to stay positive though

How's everyone else doing, any news?

Ladies, can I rejoin you please?

After our fourth consecutive loss and repeated NHS tests and scans revealing nothing we decided to throw everything at more private tests. As well as being heterozygous for MTHFR C677T I’m heterozygous for PAI-1, have high NK cells and elevated TH1 levels. My partner has 29% sperm DNA damage.

I’ve been freaking out a little as while it’s good to finally have some answers I’m so overwhelmed by it all. Recommended treatment plan for the above on its way to me this week. Need a break from all things ttc for a short while though so think we might try again from March. I’m not in the right place mentally and want to give my partner time to focus on his health and reduce damage.

We’ve also been asked to consider ICSI IVF with PGS to increase chances of success, especially after last loss - another wee boy thus time with trisomy 15, but I feel it’s complicating things. And costs! Eye watering!

Interested to know your thoughts as I’m struggling to process it all

Hi BeanDot and very sorry to hear of your losses. We also lost a Trisomy 15 pregnancy, hopefully you were told the same as us, which is that it is completely random and doesn't mean it's more likely to happen again?

Have you tried taking prednisolone for any of your pregnancies? I'm taking it for the first time with this one, after six losses, 5 in the 12th week.

We also had IVF with PGS this time, to rule out any abnormal embryos.

Any questions, please ask, although I am a newbie to the board and to pred.

Hi beandot and sorry for your losses. A break from ttc sounds like a good idea.

Where have you had your tests? I’m
hetero for one of the MTHFRs and my understanding is it reduces your ability to absorb folic acid (if you were homozygous you couldn’t absorb it at all), so you should take folate supplements rather than folic acid ones. Not sure about PAL or TH1. If you have NK cells issues you will more than likely be prescribed prednisolone which has worked for me and lots of ladies on this thread. After 3 mcs I’m now 20 weeks pregnant.

Good luck!

Hi @BeanDotSprout I’m so sorry to hear about the tough time ur having. I have s very long history of mc and ivf’s and have been diagnosed with high nk cells, aps, pa1 gene mutation (homogeneous) and high thyroid. I must admit when I was diagnosed I was actually a little relieved that there is an explanation for it and I’ll not going mad! I know that sounds sill but at least if you know what it is you can plan for how to deal with it? I would say give urself sometime to process it - look at all the options and see how u feel, you may be differently when u have processes it all. Pgs is soo expensive! Hope that helps hun xxx

Hi ferntwist, so sorry for your loss, we were assured that it was likely to be a “one-off” but I guess there’s no certainty as the other pregnancies weren’t fully tested. So I think PGS is to be on the safe side, and I suppose it will help my anxiety and increase our chances of a live birth. I need to get more stats I think just to be certain it’s the right route - sure it’s what we’ll do it’s just a matter of getting my brain and finances straight!

Prednisolone will be part of my treatment plan along with intralipids, heparin, aspirin and progesterone. I’ve never had treatment of any kind as my losses have been different and NHS tests revealed nothing so it was deemed “bad luck”. I think aspirin should have been recommended early on as it wouldn’t have done any harm but our consultant was so confident we simply needed to try again. Now I know the full picture I don’t suppose that matters though - hindsight is a wonderful thing eh?

How did you find the IVF process? Do you mind sharing the name of the clinic if you’re private and you’d recommend them? I’m weighing up options.

harrietm87 congratulations on your pregnancy. Yes I changed my supplements back in March. Now on Thorne prenatals along other things as recommended by a fertility nutritionist. I’ve taken so much advice on lately I’ll be like a walking pillbox come March! I’m seeing George at Zita West. They were really good with initial communication and I liked him when we met.

Kakaboo I don’t know why exactly but I’m struggling with the idea of ivf. Part of me wonders if I should just try the above treatment plan and see what happens as I can get pregnant and have a three year old - apparently a lot of these issues can be ‘triggered’ by a first pregnancy. How were you diagnosed with high thyroid? Repeating bloods tomorrow to rule that out so interested to know as I’ve had TH4 but not TH3. Do you take any further medication for it? And not silly at all. There was a definite sense of relief in the days that followed the call but when I first spoke to George I was stunned. He was all set for scheduling in treatment and I was like erm, no thank you my head if about to explode!!! I think after 16 months of no answers I couldn’t believe a clotting factor was identified xx

Hi BeanDot we had our PGS done at The Bridge Centre near London Bridge. It was reassuring to be told that plenty of embryos were chromosomally normal, although sadly and to our shock I went on to miscarry our first normal embryo in exactly the same way as all our other natural pregnancies, so for us it didn't solve the problem. I'm now pregnant with another of our normal embryos and this time following a drug protocol from the wonderful Professor Brosens and his Coventry team: prednisolone, heparin and progesterone. They advise against aspirin as they have found it to hinder success rates. I'm currently just over 8 weeks, so still in the danger zone.
Please ask if you have any questions at all about PGS. I really hope it all works out for you this time!

Hiya,

Sorry can't help with any of the questions on ivf.. but I was wondering if anyone has done the harmony test? I am under Mr S privately and he mentioned the test for the next time I see him next week. I had an Edwards syndrome pregnancy last year and even though I was told it was just unlucky, I am concerned.

We are going to have the big 12 week scan with Mr S (🤞we get to 12 weeks) I was wondering what other people's experiences of the harmony test or having the nuchal scan with Mr S? He did say he would do extra bloods and it would a comprehensive scan. Any advice would be greatly appreciated xx

Hi Hope we definitely would have had the Harmony test if we hadn't done PGS.
How many weeks are you now? I hope all is going well.
So sorry to hear about your Edwards syndrome loss.

Thanks Ferntwist, I am over 9 weeks now. Seeing Mr S next Tuesday and have to have decided by then xx

That's great news Hope. Is this your first pred pregnancy?

Yes it is my first pred pregnancy xx

Not very reassuring about the aspirin ferntwist so will chat to Prof Coomarasamy from Tommy’s clinic about recommended protocol in January. Finally got my referral there and they’re linked to Prof Quenby and Brosens. I don’t think they’ll be supportive of the intralipids but we may be taking part in their current trials, one of which is NK cells, so they’re taking notice for some reason. Perhaps to disprove the theory...who knows!

@Hopeflower I had the nuchal at mr S’s Clinic. It’s not actually with him, it’s his colleague prof akolekar. It’s so amazing - really detailed. I didn’t get the harmony test in the end as I felt like this was so thorough. Definitely go for it if you can.

Thanks Harrietm87. That's good to hear that the scan was really detailed. What did he look at with the scan and mr s mentioned other blood tests etc to calculate the risk of abnormalities? Xx

hopeflower they do the same blood tests as on the nhs - I.e. hcg, Papp-A and poss something else. They have a background risk for your age and then feed the blood results and the nuchal fold measurement into a formula to calculate your risk for downs, pataus and Edwards syndromes. They also look for other soft markets including the nasal bone. You’ll get all that on your nhs scan too.

The difference with the private version is that the scan is way more detailed - also checks the heart, kidneys, bladder, stomach, brain, blood vessels into the cord and placenta etc etc. It lasts a lot longer and the prof is really skilled. With most he can tell the sex even at 12 weeks. He’s really nice as well, very gentle and thorough.

That's great it's so indepth and amazing if they can tell the sex. Thanks for information xx

Harriet that sounds great, so detailed.
Hope everything crossed that pred will be the magic ingredient!
Bean definitely worth finding out what they think about aspirin. I was surprised that Coventry don't prescribe it, but I'm sure it's coming from experience as they see so many ladies like us.

How is everyone doing this week? How does everyone find morning sickness on the pred, is it different? I'm suffering today but not sure if it's the build up of pred or the pregnancy.

Hello ladies!

Just wanted to drop by. I used to be on this thread a while back.

After 6mc and 4 ivf cycles my little beautiful baby boy is 6 weeks old :). I took us 4 years countless doctors and ivfclinics to get there

We did pgs (we have low sperm count so needed ivf ) and combined it with immune treatment from mr gorgy in London. I had a 2 mc under mr shehata and so moved on. I saw so many doctors and went to so many ivf clinics. I miscarried twins at argc and thought if they couldn’t help no one could.

But somehow I made it and am blessed. I suspect pgs actually played a big part for me as this was my first normal pgs embryo but was my 4 th immune go. (I’m 33 now but I know my argc twins were abnormal so moved to pgs)

To all of u going through it it’s such a hard lonely time. Be kind to urself and I hope u have the strength and finances (!) to keep going to get ur rainbow. It’s so worth it at the end xxx

Ps I’m not on here often but if anyone wants to ask anything please pm me and I’ll try help! Xxx

Hello Trying and thank you so much for your encouraging message. Massive congratulations on your beautiful baby boy!
Can I ask what drugs protocol you were on for your pregnancy this time? Also if you don't mind sharing, how many weeks were you when you suffered your losses?
I've had multiple losses, usually around week 12 (although suspect heartbeats stopped earlier) and now on my first pred pregnancy. I'm 9 weeks so still in my danger zone.
Thank you.

Hi fern.
I had 3 chemicals and 3 mc 2 at 9 weeks who had heartbeats at 6 weeks and one mc at 7 weeks which had a heartbeat the week before

I was on
Pred. Clexane. Asprin. ivig infusions. Metformin. Hydroxycholoroquine. Progesterone. I think that was it

Good luck hope this is ur rainbow x

Thank you! Great to hear your success story.