Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

@VenusStarr that all sounds very positive! I hope you're feeling better now you have a plan in place? You might not even need Plan B with the ivf if this month works....very exciting! Good luck with the trigger and fingers crossed! 🤞🏻 xxx

@NessyT91 sorry was just reading back through the messages there, thanks so much for your kind message and sorry to hear it was a BFN this month, its so draining isn't it. I just wanted to mention i did superovulation through my local NHS IVF clinic at the hospital (in Scotland) whilst also under Dr S at the time, sadly I didn't get pregnant after 6 months so I moved onto ivf privately (it did work for me in the past though as I had my little boy with SO and after that the miscarriages started). I couldn't find anyone up here who deals with immune issues but I absolutely would move Dr if I could get the same treatment as its such a hassle getting up and down to Epsom with a 3 year old to care for aswell. Just adds extra stress to what is a stressful process anyway! I hope you get your treatment all sorted xxx

Hi everyone. I have been stalking this thread for a while now trying to pluck up the courage to engage with you ladies and tonight I feel is the right time. I am almost 34, and have a four year old son. From my pregnancy with him my husband and I have had four miscarriages... One early loss and three little babies lost between 15 and almost 17 weeks. We decided to take a break from it all before it broke us... It nearly had. But almost two years on from our last loss we go to see Dr S in just over a week. Wanted to connect with some women who are on a similar journey... I feel very anxious about going over and at the same time I am trying to keep hopeful that he can give us a way forward. Where I live the miscarriage 'care' is appalling (I am starting to think that's everywhere), we have had testing done but most seems irrelevant and random. Certainly not like the tests the clinic recommends. We have post mortems of the babies which all had placental and cord issues. We had a care plan from a professor in Manchester for our last baby which involved prednisolone and clexane and I thought this would be the answer to our problems but it wasn't... It's all so sad and I still can't believe that this is our journey. Xx

Hi @Jenthsf and welcome to the group, I'm so sorry for your losses, absolutely heartbreaking! I've lost 6 (first trimester) and have a little boy aswell. I'm sometimes shocked when I say that number out loud!

I really hope you get some answers from Dr S, he is certainly thorough with the tests! Its a lonely old journey we are all on so nice to be able to talk to others going through the same nightmare! Xx

Thank you @luckyducky2... It's terrible... I am so sorry to hear about your losses. Did you get testing with Dr S? Xx

@Jenthsf yes I had tests last year right before covid hit and apparently have high nk cells in pregnancy. I tried superovulation for 6 months but couldn't fall pregnant and have moved onto ivf. No success yet im afraid buy hopefully will have another transfer in a month or two! I used to fall pregnant quite quickly but i think my age is against me now, another hurdle to jump but not giving up yet!

Do you have far to travel? He is super confident which is so reassuring when you've had no help elsewhere! I'm up in Scotland and help for recurrent miscarriage is non-existant up here, its so frustrating Xx

@luckyducky2 that's so difficult isn't it? It's so hard when things change and add more complications into the mix. We live in Northern Ireland so it's a bit of a faff to get back and forth but what can we do? After our losses I haven't even had a scan or hormone bloods done...seems crazy, so I will be glad to get some proper care for once. A few of the bloods I have had taken in the past year seem to indicate autoimmune alongside my medical history itself but I guess we will wait and see. We sent all of our notes to Dr S last week and there were quite a few pages so hopefully he will gain some information from them. Xx

Welcome @Jenthsf I am so sorry for your losses ❤️ its been good to have this group to talk to as I'm going through different stages. Everyone at the clinic is so lovely and it helps that they take the lead. Lots of love.

I did my trigger last night! It was a bit scary and I had a couple of moments of I can't do this, but I did :) it was a bit itchy after and I had a tiny bit of blood. I'm actually glad I did it myself (dh admitted after he's a bit scared of needles but if I definitely couldn't do it, he would have) but because we're moving onto ivf after, I really do need to do this myself as he works shifts, so won't always be there. But I'm feeling a bit more settled, we're doing everything we can.

Xx

@Jenthsf I waited 6 months to see a recurrent miscarriage specialist on the NHS and it was pathetic, absolutely no tests done and she told me I should think about egg donation. I was raging! Nothing against using egg donors but its the fact they won't listen or help when you know your own body and know something is wrong? I hope Dr S can give you some answers and get your treatment plan started....you will feel so much better qitb a plan in place I think! You must let us know how you get on?

Well done @VenusStarr and how exciting! You will honestly get so used to doing the injections when (if!!) you do the ivf. Im feeling so restless, wish I could get started on the next transfer!! Xx

Hi all,
Hope everyone is doing okay?
I had my follow up with Dr S yesterday at Harley Street. So I’ve got PCOS which I had absolutely zero clue about and also slightly raised NK cells (229). I’ve been put on Hydroxychloroquine & Intralipids and been told to slowly ease Metformin in as well. I’m also on Inofolic to help with the PCOS!
Anyone else on the same/similar plan?
I’m confused that I’ve been told to stay on the high dosage Vit D irrespective of my Vit D being normal - I’ve heard too much can have negative long term effects.
Also my husband was told it is mandatory he gets a DNA fragmentation done which I found a little unfair as surely it’s our decision as we are paying for the treatment! Dr S he will not let it go and made him book it there and then! :/
How is everyone? Xx

@HopingForABlessing I think the insistence on dna testing is a newish thing as when I had my treatment (admittedly 3yrs ago) my partner didn’t go to the clinic my 10 week scan and even then it was to meet the professor. I was with dr S for 18 months prior to this and had a miscarriage under his plan but still my partner wasn’t called for!
That said, if that’s his plan I don’t think he’ll let you cut it out. I’ve said this before and apologies to the people reading the statement again but prior to my initial testing with dr S I’d had a large number of tests by Axa. he wouldn’t accept them saying they were out of date and “this isn’t pick n mix” “I’ve got my reputation to consider”
I think if he has a plan he won’t budge. But he worked for me.
Good luck x

@Naticle thank you for your response. Even last year someone I know had treatment by him and she told me her husband didn’t need any testing done as she was so confident it was her with the issue! And she conceived fine and gave birth to a healthy set of twins. £450 is a lot of money.
I’m already finding it difficult to keep up with the costs

It's so difficult @HopingForABlessing we've spent well over £6k now (not including the sperm dna fragmentation as we chose not to do them) and we're still no further forward 😔 the superovulation cost £1100 this cycle. So are you not allowed to ttc until you've had the dna fragmentation?

I think I ovulated on Sunday evening, I usually get strong cramps and Sunday was no different, bit worried that it was a bit early, I thought the trigger was supposed to mean 24-36 hours later. I got a positive lh test on Saturday too, so think my body was trying to do it on its own. But I looked up a study that said trigger in line with your own natural surge has good outcomes 🤞 I can't remember if I said, but my test day is the same day as my ivf consultation - you couldn't make it up! So we've decided to wait until the day after, so I'm not distracted. Plus I want to make sure there's no chance of picking up a trace of trigger. I'm feeling OK if this doesn't work. We know we've given it our very best shot and we're definitely in with a chance. I'm definitely ready to move onto ivf now, I think I need a break from scheduling sex and being wholly responsible.
I'm loving the ☀ today, making the most of a couple of days off. Sorry this is long!

Hope everyone is OK xx ❤️

Hi @HopingForABlessing we are on a similar plan, I have PCOS but I'm only on the inofolic plus hydroxy and intralipids, DrS then added in prednisolone after my last miscarriage as he didn't think the hydroxy was strong enough. My husband didn't have to get the dna fragmentation test although it was advised (dh was grumbling about how much it was all costing so we left it)....I kinda wish we'd had it done now as I think its so easy to blame it all on the woman's body when I think there can be factors affecting both people? I will always wonder what those results would have been!

@VenusStarr I cant even bring myself to count up how much we have spent with Dr S, 2 rounds of ivf and various frozen transfers....I think I would be sick!! 😱 xx

Hi @HopingForABlessing - I’m on infolic and metformin too. I found the metformin the harshest - even when I eased onto it very slowly it still gave me weird stomach problems. TMI but I’m glad I’m shielding because I can’t stop farting and I stink 😂 but the infolic is fine, and I got pregnant first month on both of those.
That’s so frustrating about the dna test - we kind of regret doing it - my partners DNA was only 1% off ideal and they still tried to sell us a male fertility appointment. We’ve never had any issues with getting pregnant or genetic issues with babies, so it did feel a bit like them trying to get more money out of us.

Sorry @Tinpo but that really made me 😂😂😂 I find the cyclogest has similar effects! Have to say since I started on the plan, I've never felt so bloated and disgusting. Dh said yesterday all I talk about is the side effects of medication I'm on. So I've become boring too! 😕

@Luckyducky2 I know, it's horrible isn't it? Dh doesn't know the full extent of the costs, he'd be horrified. Just keep hoping it will work for us 🙏 ❤️

I’m on cyclogest too @VenusStarr so that may be that contributing to my stink too! And I’ve got so many spots from the prednisolone. And an even hairier face than before. Feeling pretty disgusting here too, and a bit like my personality has been drained from me - I think that’s a combination of years of baby loss, a pandemic and now a high-risk highly-medicated pregnancy. Let’s hope this is all worth it!

Another one here with gassy side effects from cyclogest! I'm just glad my husband is out at work all day so I can let rip in peace 😂 I have to remind myself I can't when he gets home! @Tinpo I had spots all over my face and neck too, but they have gone now I've stopped the pred.

Sorry to hear what some of you are having to deal with. I really really hope it works out for you soon ❤️

@VenusStarr you’ve given it your very best shot now 🤞🏼
I feel I’ll probably be spending around that much and more to be honest! Let’s see what happens.
I had to get out today to clear my head from the expense stress 😂 went to the park for a wonder!

@Luckyducky2 sorry for your loss - hopefully the pred works better for you? And yes I definitely think women tend to get the blame almost always...it’s definitely worth my husband getting himself checked out but it’s just all soooooo expensive!

@Tinpo - when did you ease in the metformin? I just started taking my medication today. So today and tomorrow I have to take 2X Hydroxy after lunch and 2X Hydroxy after dinner but then from Thursday I just take two after either lunch or dinner. Dr S suggested maybe introducing Metformin after a week? And then every few days? How did you do it...?
And yeah super annoying about the DNA fragmentation test because it’s £450 when I’m pretty certain it’s me because I had the same issue with my ex partner. Feels unfair that we are being pushed into doing it

@HopingForABlessing I think I started on one a day straight away, and then added a second once the side effects weren’t as bad. Always with big meals, which was a struggle at first because it suppressed my appetite and made me feel a bit sick, almost like pregnancy nausea mixed with a bad stomach. But take it as slow as you need to, don’t increase the dose until you feel ready to.

@Tinpo I think I’ll start taking 1 Metformin in a couple of days as my tummy is already disagreeing with Hydroxy! 😭
I might start the Metformin then take another one a couple of days later and so fourth until I can take 1 a day. Well done for being on 3 a day! I hope I get there some day 😂
I can’t believe how much I have to remember lol I’m so terrible at all of this! X

Hi ladies, I’m currently going through my 5th miscarriage in 14months (all 6-7 weeks and mmc) I’m thinking of booking to see mr shehata in Epsom. Has anyone else been to see him? I know it’s very expensive but I’m at a loss at what to do next

@Soph30 I think most people on this thread are under him. Look for the references to Dr. S. He is expensive but IMO the best.
I’m nearer Epsom but had first appointments in Harley street as that was where the first availability was.
Go for it. Happy to discuss via pm if you prefer x

I am so sorry @Soph30 ❤️ I am seeing Dr Shehata and have been since my 4th loss in October last year. It is expensive but we do finally have a reason for our losses. We are still ttc and so the costs have mounted up, but we have struggled to conceive in the past, so perhaps not unexpected and we're now looking to do ivf, but I am feeling more confident moving forward, knowing what protocol should help us and having the support of the clinic.

Have you ever had your babies tested? We got our last one tested and he was chromosomally normal (grew to 6+5) but I miscarried at 9+, so considering he was very small, they still had enough to give us some answers and it confirmed that something else was happening for us. I have aggressive nk cells so am on his complex plan with intralipids, hydroxychloroquine and prednisolone. Happy to answer any questions xx

@Soph30 I'm so sorry for what you are going through. I went to see Dr S after 4 miscarriages and no answers from the NHS. At the first appointment he found I have PCOS and then 2 weeks later we had our blood results which showed high NK cells , low vit D , positive ANA. I honestly felt relief after having those tests like finally I had answers and a new approach to fixing them. Seeing Dr S helped my mental health so much and gave me the courage to keep trying. He is expensive but for me it's been worth it his time has been invaluable. I am currently pregnant after using his plan and I'm 16weeks I've never got past 6weeks so a massive difference. I think overall it will have cost around 8k. Good luck in your journey happy to answer any questions if you have any x

Hi ladies

I've been lurking on here and not posted for a while, I hope everyone's doing ok.

I just wondered if on Dr S' plan, if anyone who's pregnant is also taking clexane and progesterone - and until how many weeks does Dr S advise that you stay on them for? I'm with a different fertility clinic but being treated for nk cells and just wondered what the difference was as my clinic are telling me to stay on the progesterone til 24 wks and clexane for 34 weeks. Seems extreme. Any info would be much appreciated.
Thanks xx