Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

Having everything crossed too @MrsMargot - hope the scan next week delivers good news!

I also have everything crossed for you @MrsMargot really hope baby catches up this week! Xx

Hi All,

Just wondering if anyone can help me interpret some test results? I’ve had them sent over today from Dr Gorgy’s office ahead of my next appointment with my IVF clinic. I don’t think I will have time to get in for a follow up appointment with Dr Gorgy before we start our next FET although I will book a follow up appointment for as soon as I can. We have decided we just can’t delay any more. All my endometrial biopsy results are within the ranges they were testing for although one result was at the very low end of normal (IL-18/T). The cytokines/tnf alpha results were also in range although both were towards the upper end.

What I don’t really understand is the MTHFR results which suggest I’m a carrier of 2 genes but then the letter goes to say so is 50% of the population so what was the point of the test?? Or is this not a positive result?

Any thoughts appreciated!

@Sezmarelda1 @SReyn @HopefulH thank you very much! I really do not know what to think. I am hoping the scan next week is a good one. Surely today’s was unexpected! 🙏🏻

@InvisibleDreamer there are two main MTHFR genes, and you can carry 0, 1 or 2 mutations for each one. The more mutations you carry the less able your body is to metabolise folic acid. I looked into MTHFR a while back as I have 1 mutation on each of the two genes (if I remember correctly). From what I read this means my body is less efficient at metabolising folic acid, but it can still do it to a satisfactory level. That said I made the choice to switch from folic acid to folate (this by-passes part of the "faulty" metabolic pathway that MTHFR interferes with) and I was also put on high-dose folate by Prof Quenby as a precaution. There does seem to be a higher rate of miscarriage in people with the MTHFR mutations, but not everyone with an MTHFR mutation has problems, and as it's such a common mutation it seems to be dismissed by a lot of doctors. The Miscarriage Hope Desk website had a really good article on it but my antivirus software is blocking the website for some reason, but it's worth checking out if you can access it!

Thanks @Sezmarelda1 I will have a look at that and do some more research.

@MrsMargot I hope everything goes okay, thinking of you, so hard.

@star2022 hmm it's so hard to know what to do as there are so many different protocols. I understand the clinics want to give us as many chances so give us max drugs but I have also heard that less drugs can often result in better quality...and we only find out what works after spending thousands and investing so much emotionally! That does sound okay that you were on a protocol with pred and blood thinners. Was that because of the ANA antibodies? Dr s has advised a similar protocol for our next ivf.

@VenusStarr you seem so so clued up. I have also read about Dhea (and I have got some but too scared to open) and wonder if that is a good idea to add to the mix. Who knows!

What I am about to say here may sound controversial. Does anyone wonder if these plans really do work?! I know there are lots of success stories on this forum so it may be helpful to hear from you. How did you feel about starting the plan and before you found out you were pregnant and it was going well? I think I am so unsure about all of this because of the stuff we have to sign about not being evidenced based. But then when it feels like all other avenues have been exhausted what are we supposed to do! Sorry for the rant, I'm just a bit annoyed. The plan was to have a couple of natural goes with pred before a new EC and 1 week into pred I get covid. Can't help but think this is my body's way of saying "no" to all of this but then I haven't had it a while and it's been going round work but it's just annoying!

@Zest11 thank you very much!

i can relate to your question 1000%. I would give you a different answer 2 years ago though. As a bit of background, I have had 3 miscarriages pre going to Dr S. I have MANY test privately done (and NHS but the private were a whole suite) and I was under the supervision of 3 different doctors. Every single one of them was telling us that absolutely nothing was wrong and it is bad luck (they could not pull the ‘chromosomal abnormality’ card because all the embryos were tested after D&C and they were healthy. They kept on saying ‘keep on trying and one will stick’ absolutely rubbish and completely shuttered my mental health. I took matters to my own hands and by putting all my bloods in spreadsheets with normal and optimal ranges, along with reading Open Access medical journals, I had the idea that potentially this was where my problem lied. I went to Dr S, he requested 19 vials of bloods and the second time I saw him, he said’ this is the problem, it is easily fixable, this is the protocol’. I was relieved. I cannot explain it in any other words. A HUGE weight was lifted off my shoulders. I believed him 100% , I fall pregnant the first month on his protocol, I had an uncomplicated pregnancy and I delivered a healthy baby.

now, things did not end up the same the second time. I was SURE it would work. I followed the exact same protocol and I had a miscarriage in the summer. He added more medications and I now have this in between situation that I do not know what to make off.

i know that his protocols work, because it worked for me the first time but instead of believing blindly that there is no chance for things to go wrong, I have realised that some of the doses are pure luck…

Fingers crossed for you @MrsMargot 🤞

@Zest11 Yeah its so so hard not knowing which route to take. Even with SO I sometimes wonder if I should just try the hydroxy and intralipids on its own first without the prednisolone (if he does end up adding it in). My cycles are really regular and I have read some people initially found it easier to conceive before pred was initiated and then since starting it they have struggled. Just don't know what to do. And yes it was due to the positive ANA, I was on daily aspirin, 10mg pred from day 2 and clexane 20mg from transfer. Dr S did say 10mg pred wouldn't have done anything and there was no need for the clexane 🥴 are you positive for ANA too? Sorry to hear you've caught covid, what cycle day are you on? Have you started your SO cycle?

Also, I had some rubbish news today and it stressed me out all day. Dr s had asked to get oestradiol, LH and FSH checked between days 1-3 of cycle. Had results back and my FSH was at 15.8! I'm pretty sure this is bad news and everything points to diminished ovarian reserve, but my AMH is 10 so I don't really know what to think. But this really explains why my IVF cycles failed and why I responded so badly to the drugs and possibly had not so great embryos. Now I don't know if SO will be enough or even suitable for me. Does anyone know much about FSH? I have read DHEA can help to lower it but i'm worried as it affects your hormones so I'm a bit weary. Feel like its just one thing after another..

@Zest11 I don’t think there’s anything wrong with questioning it, going on his plan is a huge physical and financial investment. I didn’t necessarily think it would work but wanted to say I’d tried everything. For this pregnancy I have been on so much medication - prednisolone, humira, fragmin, hydroxy, metformin, intralipids, progesterone, aspirin, all the supplements. And IVF meds. I’m 24 weeks now. I don’t know if it is a combination of everything or one drug in particular that’s helped. I’ll probably never know! But whenever I see success stories from women who’ve had recurrent miscarriages it’s usually down to some combo of the meds above. So I do think there’s something in it even if it won’t be the answer for everyone. He does charge too much and that doesn’t sit well with me given what a vulnerable situation we’re in. But the fertility world is full of that.

@MrsMargot I don't know what to say to you. How could the protocol work for your first but then you have these problems now? It's so so confusing. Before I had my son, I read all the journals and looked at different medications etc too. I felt like I was a professor in my own personal fertility health!

@star2022 ohh that's why you had that protocol. No I don't have ANA antibodies. I don't have any concerning antibodiesfor anything according to Dr s tests. But he did say he would put me on the protocol if we were to do ivf. So why he says you wouldn't need it but I would is confusing! I'm sorry those test results aren't what you were expecting. I don't know much about fsh but the fact that amh is good still that's reassuring. I think they all have to be taken in combination rather than alone. You may need a repeat fsh. We haven't done SO and I don't intend to. My thinking was to give my ovaries a rest before they get ramped up for the next ec.

@Ifitistobesaid thank you for your reply. It's so many medications that you are taking isn't it. But that's what we have to do. And I really hope you are able to enjoy your pregnancy at least a bit with what you've been through. May I ask, why you are doing ivf? Were your miscarriages natural or due to ivf?

I think I am questioning more because I struggle more with infertility rather than recurrent miscarriage. I had a natural cp years ago, a successful FET but then 3 failed FET last year, one of which was a miscarriage. I sort of feel I don't really fit in anywhere. I was hoping Dr S would run his tests and say "this is the problem, this what you need to do" but he actually said he couldn't be sure that the nk cells were stopping me getting pregnant in the first place and didn't want me to think he had def found the solution. But he seemed confident that the ivf protocol would work as ivf has worked for us in the past, even though only 1 in 5 embryos have resulted in a child. But then I wonder why I it worked once on a basic protocol and do I even need the steroids, intralipids and blood thinners! It's confusing isn't it!

@Ifitistobesaid sorry I forgot to add...that I completely get when you say you wanted to know you had tried everything. That's where I'm at...that in say 3-5 years time, I don't want to have regrets and would know that I tried everything!

@Zest11 my miscarriages were both natural and from fertility treatment. My first one was a natural conception and but took a year or so to conceive. After that 18 months passed by without another pregnancy so I tried IVF. Had a miscarriage from the IVF pregnancy and this time we tested the remains and it was chromosomally normal so we knew there was something more than just egg quality going on. Saw Dr S, diagnosed with PCOS and activated Nk cells and got pregnant the first month on the plan through super ovulation but miscarried again. This time it was down to a chromosomal abnormality. By the time we’d picked ourselves up to try again I was 38 so decided to do a few cycles to embryo bank with PGTA given my age and how unpredictable it could be for me to fall pregnant naturally. We had really good results even though I was almost 39 for some of the rounds - out of 13 blasts 8 were normal. For the transfer we went on the Dr S plan again, this time with humira too as my TNF alpha was high.

So maybe it was the PCOS that was causing the issues getting pregnant and the immune issues preventing me from staying pregnant? I don’t know. I should also add I was diagnosed with adenomyosis but we didn’t do anything specific to treat it.

Have you ever had any kind of diagnosis for the fertility issues? Is sperm quality an issue?

@Ifitistobesaid ahh we have some similarities in that it has taken us a long time to get pregnant in the past and then nothing. My cp was after around 18 months or so of trying (started when I was 28/29!) and then nothing. Didn't mention it to the NHS as thought they might tell me to try 2 more years before ivf and we were fortunate in that we had our son on our second transfer. You have been through so much! Those cycles of embryo banking must have been so so draining for you. Well done for your tenacity. Dr s did mention banking to us due to low amh and if we want 2 more children, he said there could be problems in a couple of years time (as if we're not having problems now!) but we would like 1 more. My husband doesn't have sperm issues...he's done the dna frag and came back fine, not even borderline! So the issue has to be with me and because everything else seems to be ruled out I think it must be egg quality (but again, does that mean I had bad egg quality at 28?) And at age 31 I had 5 blasts from just 10 eggs collected. Now I'm 35 I'm really quite frightened at how I will respond and the possibility of maybe none or one embryo. Won't know until we try I guess!

@Zest11 it’s all such a mystery isn’t it. My embryo banking cycles were gruelling but it was actually the easiest bit of this whole journey because it went well. We always had good numbers for eggs, fertilisation, blasts, euploids so was never very traumatic. And it helped narrow down our problem.

I agree if you started at 28 it’s unlikely egg quality was the issue then. Unless you have something like silent endo that could be causing it? Have you been tested for that? I don’t know if you follow the fertility detective on Instagram but she’s a really good source to try and figure out what kind of tests to get.

Hi all,
I just wanted to say that I have just had a confirmed miscarriage. Unfortunately the embryo did not catch up. Now I need to test and see if it was normal or not.
hope everyone else is alright. ❤️

Oh @MrsMargot I am so sorry ❤️ are you having surgery with the clinic? I'm so sorry this is happening xx

@VenusStarr thank you ❤️. yes I think so. It looks like it is the only way to check what is happening. I do not like the cost at all but it is what it is 😞. I am only hoping it is quicker than the NHS.

So sorry @MrsMargot

Are you having the surgery with Dr S purely so you can test it? For my second miscarriage we had surgery on the NHS but arranged for it to be tested through TDL genetics. I had to take the remains home and put it in the fridge while waiting for the courier which was awful but they picked it up within an hour (and it was covered up in a container and bag so I never actually had to see it). It cost about £400 so cheaper than surgery with Dr S xx

@Ifitistobesaid yes. It is booked for this Friday. It is so very small that we are worried that on the NHS they will lump everything in and we won’t have any answers. Which was the case before….

@MrsMargot ok. Hope you get answers this time xx

❤️ @MrsMargot I think the turnaround for results is 4 weeks with crp. With my last mmc, I had surgery on the nhs and results took 12. My baby was only 5.2mm but we got results. I have collected at home with a similar sized baby and we got results too - just in case. I did stay on progesterone to try to hold off going naturally.
Sending you lots of love xx

@MrsMargot I'm so very sorry to read this. Thinking of you x

So sorry to read this @MrsMargot sending you lots of love and strength xx

So sorry for what you're going through @MrsMargot really hope you get some answers. Sending lots of strength x