Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

@myrainbowjourney I didn't do super ovulation but I think I would have done if it had taken longer. I was very upset when we didn't conceive first cycle we tried, but in fairness I was in France with friends and I just made the most of being able to drink rosé and eat soft cheese. No the NHS were beyond useless, they had me on a 5 week waiting list for the tissue, and by that point it had been in there for 6 weeks already. Dr. S referred me to Dr. Jan and I am very fortunate to have private medical insurance through my job so I had the next three procedures done privately. I'm very lucky because the scarring was over my Fallopian tubes and Dr. Jan said if he hadn't have gone back in to check and remove it (NHS wouldn't have done), I was at risk of ectopic

@Lozfish oh wow, sounds like you were looked after really well in the end. So sad about the nhs, they really have no urgency. Imagine waiting 5 weeks.
I was upset when I had my hyphosy with Dr S as he said they had left a bit of my right tube. He said it won't cause a problem but it just makes me sad how little care it feels they took.
I have private medical but I don't think it covers this treatment, sadly!
I'm so pleased you've had your BFP. So lovely to hear happy stories 💕

@myrainbowjourney just know that if you have any other miscarriages or complications, you can use your private medical insurance as it does cover you for effects of miscarriage. Bloody annoying it doesn't cover causes of miscarriage but you gotta take the wins! ❤️

Hi guys,

I'm so confused on what my results mean, I haven't had a positive pregnancy test in 2 years and have had 3 unsuccessful transfers. The only problem found is significant issues with my microflora (0.00% lactobacillus on 2 endometrial biopsies).

My Nk cells are low
-1st biopsy 3.44 % which is at the low end of normal.
-2nd biopsy 1.34% which is low

What treatment do they give for low NK cells and could this be stopping me from implanting?

Hi All,
I’m hoping someone here will be able to answer this…. So I had a peak ovulation reading a couple of days ago followed the next day by a negative for ovulation using clear blue test. Used progesterone this morning and later this afternoon had a high fertility reading. Is the progesterone interfering with the result? I have had this happen naturally once before where I think I didn’t ovulate the first time but then did after a second peak.

Hello everyone,

May I join you? I have had 3 misc this year - 1 mmc at 11w, one natural mc at 6w and just now a mc at 7w. This last preg I used progesterone and aspirin from bfp but it didn’t work for me. After much research and reading many of these threads we have taken the plunge and booked with Dr S, first appointment is in December. Is there anything I should know before going or anything I can do to prepare? I haven’t seen the rmc but I’m going to the gp and see if they can run some tests beforehand.

@Gardenlady543

I’ve had two biopsies come back for low nk cells both were like one percent !

I was given sitagliptin to take for 3
Months ( have a google ) which I finished in June .

I conceived in sep but sadly I’m just having another miscarriage, my 6th . I’m having the pregnancy tissue tested which will
Hopefully show if there was a chromosomal abnormalities .

I had the biopsies and sitagliptin from prof Brosens at Coventry implantationclinic x

Thanks @Finleysmom84 I think you might be the person @VenusStarr mentioned to me in another thread.

I'm sorry to hear about your miscarriages, I hope you're ok ❤️

I wonder what Prof Brosens will say about my case, I haven't ever implanted before, so I'll be interested to hear what he thinks my results mean. Not due to see him for a couple of weeks though.

Hi @Arwen7 I'm sorry for your losses ❤️ I found it helpful to sort all my notes out to send in advance of my appointment. I remember there's a questionnaire to complete before the appointment and when you see him you go through your history. I had a few questions that I asked him too. If your GP can do some bloods that might save you a bit of money. We didn't do dh's sperm dna fragmentation test but I know others have. You can have your tests there and then and my follow up was 2 weeks later and I started treatment straight away. Hope it goes well, I found the results day quite overwhelming, to finally get some answers.

I'm sorry for your loss @Finleysmom84 ❤️

@Gardenlady543 I know I replied on the other thread, but hope you're doing OK this evening.

Did you check again today @InvisibleDreamer? I haven't used clearblue so unsure. I saw your previous message about Create, Birmingham - I'm at the same clinic. I have found they are a lot more cautious about using steroids and weren't 100% happy with me being on Dr S's plan. I hope you're OK ❤️

I'm sorry about what happened with your superovulation @myrainbowjourney how are you?

Good to see an update @Luckyducky2 I've got everything crossed for your next transfer. Our plan is similar, bar the metformin 🤞

Did you have a scan this week @Badlydrawngirly hope it went well.

Hope your appointment with Dr S went well @Amy00 and you've got your meds, they're pretty quick to post them.

Sorry not to tag everyone, hope you're all doing well xx

Thank you so much @VenusStarr, that is so helpful.

I did get my gp to agree on taking some bloods so that’s something. I can’t wait to see him, it does give me some hope as I can’t stand the idea of just trying again without any changes. In the meantime we are trying to get healthier, I’m seeing an acupunturist and we are working on egg/sperm quality. Is it usually a case that you can start ttc after the follow up appointment?

Hi everyone, it’s been a while since I’ve been on here. Took a break after our 4th miscarriage during the summer. Since then I’ve been cleaning up my diet (still am - trying to get my hashimotos antibodies down). Does anyone else have experience of trying to lower hashimotos antibodies? I’ve just gone dairy, soy and corn free (I’m already gluten free 😬)

I’ve also managed to have a load of testing done. I’m in Northern Ireland and care is super limited here so had to go down to Dublin. NK cells are 24% when apparently should be below 15%. Dr has suggested Dexamethasone and intralipids during any future pregnancy. From conception. Has anyone experience of trying this?

Interestingly I’ve also found out I’m too low on progesterone for implantation to be successful. I’ve tried progesterone before but only from conception. This doctor says that’s too late and I need to track for ovulation and take it from then. Could explain the losses!

Just wondered if anyone used dexamethasone before? Is it anything like prednisolone or are the side effects worse?

If there are any other N.I ladies on here you’ll know how hard it is (impossible actually) to get these tests up north. Happy to share details with anyone interested in going to Dublin.

Thinking about everyone on here and I can see just how much people are going through. It’s so tough! But at least we have this forum xox

Hey @VenusStarr. Thanks for checking in 🥰
I'm fine thank you. I now have started letrozole again and have my scan booked for the 2nd so my focus is on the next cycle. Just sad to have had a glimmer of hope. But I really think the trigger hasn't left my system. I just want to see an unquestionable line one day.

Now paranoid that I'll ovulate from my tubeless side, or be hyper stimulated and can't try 😭. I've always got something to worry about.

I'm also seeing someone else from my scan but I'm sure everyone there knows their stuff!

How are you doing? xx

Hey all,
Just wondering if anyone has had a similar experience...I had what I thought was my period 4 weeks after my MVA, even though I had retained tissue.

It's now been nearly 6 weeks since then and absolutely no sign of any period. I'm just starting to freak out that they're not going to come back or that something else weird is going on like scarring or something...

Also @VenusStarr I hope you don't mind me asking but have seen that you're with Create fertility. We're thinking of considering then for IVF with PGS if our karotyping shows that we are carriers of a balanced translocation. Just wondering if you'd recommend them & if you'd mind sharing how IVF works alongside Dr S' protocol?

Thank you xxx

Hi ladies! I hope you won't mind my tagging-along :)
I'm so sorry to have found you all here experiencing this rubbish time as well as me, but really glad to know I'm not alone too!
I'm 29 (for a few months longer) and we started trying about 18 months ago, since then I've had 8 miscarriages (1 mmc at 10 weeks, two around 6 weeks and most recently 4 cp one after the other each month)
I went to see Dr S privately after exhausting every single other test through Tommys and NHS, to find I have super high and complex NK cells as well as PCOS. I'm starting a barage of drugs, hydrachloriquine, metformin, inofolic, intralipids, aspirin and supplements before ovulation - then more intralipids, prenisalone, omneprazole and progesterone after. I'm half excited half terrified - has anyone else been on this much? I'm pretty anxious about it, but at this point I'll try basically anything - it seems most people get either the hydrochloriquine or the steriods through so feeling like my cells must be through the roof for both! We have to wait a few weeks before trying again for the drugs to start working which I find so hard too - I have zero patience and I feel like this TTC journey is ALL about the patience.

Hi @Tumby when I had retained tissue I had a period bleed but it wasn't right, then I had almost black spotting for a couple of weeks, so the GP prescribed antibiotics and then I passed the tissue and had a proper period and things reset. Do you have any pain, discomfort or discharge? I hope things settle soon.

With regards to Create, I like them. My amh is low and they use mild ivf, so less stimulation drugs. I found them very honest about our chances and clear about the steps. We didn't pgs test the embryos, although it was an option on our first round, we chose not to as we didn't know how many blasts we'd get. In the end we got 3, so glad we didn't. If these cycles don't work, we may look at embryo banking / testing. I'm not 100% about pgs testing for us but we've not had a chromosomal issue picked up on tests on the baby or karyotyping.
My doctor was very cautious about Dr S's plan, but was happy to facilitate. They just have a copy of my plan on file. They've asked me questions to check with crp about how and when to do certain things, which is good.

Hi @Trytryandtryagain11 welcome. I don't have pcos but other than that, my medication protocol is the same. It is a lot. We struggle to conceive, so I've been under Dr S a year pretty much on that protocol and it is intense (and expensive). Currently on my 4th night wide awake at 4am which I'm guessing I have the steroids to thank for! Best of luck.

@myrainbowjourney wishing you lots of luck for this superovulation 🤞 I have heard our tubes float around, I thought they were fixed, but I've definitely heard of successful pregnancies from a tubeless side.

@Arwen7 I think if your results are clear, he devises a plan and most people do start treatment pretty soon after the results appointment, so hopefully not long for you.

Hope everyone is OK x

@Trytryandtryagain11 welcome! I’m on the same plus a couple more which they can add if what you’re currently taking isn’t working. There are also filgrastim injections which costs over £100 each and you take every 3 days. Sadly it’s not worked for me yet after 5 months/ cycles of the enhanced treatment but I’m going to try again at least one more month. Furthest I’ve made it is to 16 weeks so far. Good news is I personally have never had any side effects and I actually find the drugs plateau my hormones so I don’t even feel emotional. Only issue is the huge financial debt. Good luck! My fingers are crossed for you! xx

@NImama I also have Hashimotos, but I only have positive TG antibodies. I managed to bring them down a bit by taking 200mg Selenium and Vitamin D. Make sure your Vit D levels are in the upper range and that your Ferritin levels look good as well. I also recommend Izabella Wentz' book on Hashimotos. You might also want too look into Low Dose Naltrexone (LDN)

After an ectopic and three losses I'm pregnant again. But I'm only 6 weeks, so a long way to go before I'm out of the danger zone. Crossing fingers. I'm on Levothyroxine, Prednisolone, low dose Aspirin, Omega 3, Vit D, Folate, NAC and LDN.
All the best Xxx

All the best. Xx

@VenusStarr thank you! Oh gosh, not looking forward to the insomnia part of steroids (or the weight gain!) - although I'm already quite nocturnal so it can't get too much worse!

@PinkRose100 thank you so much, that's really reassuring to hear that you've not been too poorly on all the meds although wow yes it is silly amount of money (and the injection sounds even worse), I almost fell over when we got the bill for the bloods tests and then again for the meds - along with travel to Surrey for the intralipids every month too! I have my fingers crossed for you this month! We seem to get pregnant easily but are losing them every month before even making it to 4 weeks at the moment - Dr S said that the pregnancies getting shorter and shorter are a sign of an immune issue like this so hopefully it's the case as the bloods seem to match up with the thoery but trying to be realistic that it may not work - so hard isn't it :( xxxx

Thank you @VenusStarr, you're always so very helpful.

So now I'm even more confused - we had a consultation with another fertility consultant today to request blood tests for karotyping & he's now said that he's doubtful that my immune system was/is the issue & said the blood tests done by Dr S are not as effective as an endometrial biopsy so wants me to now have that to see if I even need steroids/hydroxy at all! He said it's more likely to be the sperm, given that my partner's DNA fragmentation levels were quite high. I even asked him why there were many different schools of thought & he just said 'oh, I know it confusing', but no answer. He also questioned the intralipids. He's trying to say we go down the IVF route cos of my age, even though we have no difficulty conceiving. I'm so baffled!!!! 😭

Hope all you ladies are doing well. @Lozfish @treesall how you getting on with your pregnancies?

Xxx

❤️ Which fertility specialist did you see @Tumby? I had the nk cells biopsy before after my 3rd loss. My cell count was normal and I was told that it was likely that another biopsy would be normal too and to try cyclogest. I did and then I miscarried for the 4th time. We tested that baby and he was normal. That's when we decided to see Dr S and my nk cells with him are normal it's just the activation level, which the biopsy doesn't look at.
I have since gone back for a repeat and I got a super low reading (possibly due to all my immune meds?) but was then told I'd need a third biopsy as the low reading was probably a fluke . This was Professor Brosens at the implantation clinic. I'm a bit sceptical as I saw someone on one of the Facebook groups had similar results to me across 2 biopsies and he's prescribed them prednisolone 🤔
It's so hard to know what to do for the best and who's plan to follow. I guess I feel safer with Dr S as its a different approach whereas the nhs just seem to say keep going without changing anything.

Don't be pushed into ivf just for the sake of it, we've only done it because it's been a year without a natural pregnancy now / since my diagnosis with Dr S. X

Hey @Tumby. Oh gosh. I feel for you having had a different opinion from someone else. As if this whole process isn't confusion, frustrating and hard enough without doctors having different suggestions and ideas! Argh!! The only good thing I think is that neither are expressing concern around the likelihood of any cause / treatment being effective, so hopefully that gives you some reassurance that you will get your baby eventually. I know that doesn't help much though when it all feels so impossible and far away.

I'm doing ok thank you. Unbelievably I'm 20w tomorrow. we have unfortunately had a major falling out with the in laws over this pregnancy (MIL can't get over the fact that we haven't told the whole family yet and is being really quite awful to us about it) which is really upsetting / stressing me out but I'm trying hard to ignore it all because I know we haven't done anything wrong. It is rather putting a cloud over everything though! I have my scan next week and hoping that makes everything real.

Sending everyone lots of love.

@Tumby I think there are so many different schools of thought because the whole research area is totally underfunded.

Everything with Dr S is done on the understanding that it may not help. My father in law is a doctor and read into it all for us so we could make a decision feeling like we had the facts and essentially there just isn't enough research either way.

What has been proven to help RPL though, is proper early pregnancy care with Dr S's clinic offers. Also, other than the steroids, and even then it's just a small chance, none of the medications prescribed do harm so we're seeing it as a "better to be safe" thing.

www.tommys.org/baby-loss-support/miscarriage-information-and-support/tests-and-treatments-after-miscarriage/natural-killer-cells

This is a great page about it.

Essentially there just isn't a consensus because there hasn't been enough research. Do what you think feels right for you

@Tumby that sounds really frustrating. I got recommended a book called 'Is your body baby friendly' which might be worth a look if you felt like you needed to weigh up your options. It does seem like ivf would be an awful lot of money if you know you can conceive naturally, though if they could test the embryos for chromosomal abnormality then maybe it would be worth it?

@treesall you poor thing, that's absolutely the last thing you need to be dealing with. Do they know the history and why you are so nervous to share the news? It feels very disrespectful of your feelings and what you've been through.

My pregnancy is going ok, I'm 9 weeks now. I had a scan on Friday at 8+5 and all looked ok though I was measuring at 8+4 so I had a bit of a panic about that but Dr. Jan said not to worry and the HB was strong. Still feeling bloody awful every day, the nausea seems to have gotten worse and I'm having to nap every lunchtime but am feeling fortunate to have symptoms, it's keeping the anxiety at bay!