Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@Sophi81 I know exactly where you are coming from. The break is nice if you have no say in the matter, I've found since we decided not to try it's not been a relief at all. But I'm still not sleeping well and I know it's the right decision for us. I just keep saying I wish I was normal! But I guess that's life. I haven't taken any of the meds in about 3-4 weeks now and can't say it's made much difference to my sleep, I think maybe one of them was the trigger for insomnia but I do get stuck in a bit of a vicious cycle of negative thinking once it starts up. I haven't had a pcos diagnosis but something is definitely going on, I'm going to try and get the recurrent miscarriage clinic to refer me for a laparoscopy. Not sure what my chances are but I do have pelvic pain a lot! Even if we never decide to follow the immune plan I'd still like to know what's going on. So afraid I don't know anything about diet etc but hopefully someone can help. I feel as though this has taken over so much if my life and in one sense I should persevere but then on the other hand I don't want I keep going and go through it all again and again with no success! I wonder if taking the meds on positive test does work for those who get a bit further on than a chemical. Because if you can get to 6 weeks then surely
things are not going wrong early on. If that makes sense x

@Ralowi I know how you feel! It's horrible to be in this situation! Makes me feel really frustrated, annoyed and depressed. The only thing I am happy about is not taking any drugs!!

As for something triggering your insomnia, I know hydroxycholoriquine triggered my hair loss and it's still falling out 6 months later.

I hope the laparoscopy gives you some answers. How long have you been trying now?

@Sophi81 I have PCO and diet mainly consists of three meals and day, no snacking on refined carbohydrates or sugars, and (as simple as it sounds) water, sleep and a few exercise sessions each week. Adding light weights can help.

I take Metformin (originally prescribed by my clinic but now by GP) and Myo-inositol (suggested by nutritionist). I’ve read that they do similar things but there’s no harm in taking both. Taking vitamin D can also reduce symptoms. Can’t say that I know what’s helped but I’ve had a fairly steady 32-38 day cycle.

I’ve been under the care of Tommy’s. What are you hoping they might be able to help with? Are you interested in trials?

@MyEasterEggs would you recommend I speak to a nutritionist as I am so confused with what I should / shouldn't be eating. Where can I get mya-inositol from?
How much metformin do you take? CRP put me on metformin about a month ago and advised I take 3 a day 500mg. I am only taking it twice a day so far but my GP said they are happy to prescribe me if I need any more so was quite surprised at that.

How was your experience with Tommys? I was just intrigued to know as I had 4 miscarriages and I wasn't referred there? And not sure what they would do for me. I recently read a story of someone who saw them after 1 miscarriage I think and went on to have 3 pregnancies with them. So I wasn't quite sure how it works and if there is a waiting list etc.

@Sophi81 seeing a nutritionist to get a tailored plan is always best (if possible and affordable) especially if you’re feeling confused. I’ve had nutritional consultations the whole way through my testing and treatment this year (pre egg collection, pre hysteroscopy/EndomeTRIO and next week pre embryo transfer) because my supplements are tweaked. And I still feel overwhelmed at times because the advice can be a lot to take in and things do vary between people. My partner had a consultation too and spent a couple of months following a protocol before giving his sample for egg collection. He also saw urologist Jonathan Ramsay as he had high DNA frag despite his basic SpermComet sample being normal. Ended up on antibiotics for a hidden infection.

Check out Melanie Brown. You can go on her waiting list or see one of her recommended nutritionists. I’m with her colleague Anna Firth who is lovely.

I take Inofolic Alpha www.fertilityfamily.co.uk/inofolic-alpha/ and Metformin is 500mg twice a day as I have mild PCO.

I don’t think it’s standard to get a referral to Tommy’s unless they’re your local recurrent miscarriage unit but could be wrong. I contacted them via their website to take part in a trial, and I did meet with a consultant there, but since I’d had so much testing there were no benefits to being under their care. I felt it would’ve delayed things, and my local NHS unit were prepared to give me aspirin, progesterone and steroids anyway, though their most recent trial may be worth enquiring about.

As it happens I decided to go down the ICSI IVF route after my sixth loss so we knew we were putting a genetically normal embryo back. This has involved more testing through my clinic, some recent support from Raj Rai at St Mary’s who tested my Diamine Oxidase levels (had never heard of this but relates to histamine) among other things, so it’s worth getting in touch with him if you’re TTC naturally. Where are you?

Morning all. Hope everyone is ok. I'm trying to do an FET this month on Dr Shehata's protocol but just had a really disappointing day 9 scan with my IVF clinic. My lining only measured 5.4mm despite being on estrogen for the past week. Has anyone had lining thickness that thin at this stage and gone on to transfer?

@Sophi81 yeah I feel like it takes something to trigger it and then it's probably just the stress of the whole situation causing the problem to continue! We have been trying since Jan 21 and had 6 mc. I have been looking at hyper fertility and do believe I have this too. I can fall pregnant every month but my body is accepting all the pregnancies even if they are not viable. So if I have this combined with high and active nk cells it's not looking good and we would potentially have to go down the ivf route to make sure we were only using the best embryos. Immune treatment is only going to help with viable pregnancies and I don't know if mine are or not! Only had one tested which was normal. But then ivf success rates aren't that good, even more meds to take and could just make the problem worse

Hi @Ifitistobesaid I'm sorry you're having lining issues. I've had 2 FETs cancelled now because my lining has stopped responding by estrogen. My first FET on it was textbook but had a MMC last November.
I'm sorry to say that mine have been around 5.7/8mm at day 9 and they got cancelled. I really hope that's not the case for you. When they increased my estrogen my lining bottomed out and lost the triple lining.
We're on a break now and my new protocol is going to be a low dose stims / natural modified cycle. Ihope your next scan is better news x

Thanks for responding @VenusStarr, I am very much expecting this cycle to be cancelled.

Since my last ERPC 18 months ago I've had lighter periods but no one seems to think I have Asherman's. I had a saline scan which was clear and been scanned in 3D by so many doctors between Dr Shehata, my IVF clinic and the NHS miscarriage clinic and all looks normal from what they've said. I haven't had a hysteroscopy but if this fails I will go see Adrian Lower.

What's strange is that I was scanned mid-cycle by Dr Shehata's office in May and June and my lining thickness was fine, about 9-10mm, but it wasn't triple layer. I read somewhere scar tissue can show as lining thickness but if that is the case wouldn't that be showing like that now?

I also had a 25 cycle last month which is extremely unusual for me.

Has Dr Shehata or your clinic given you any explanation why you are not responding to estrogen anymore?

I had a hysteroscopy with Mr Jan in April as my ivf clinic suspected scarring tissue @Ifitistobesaid but it was all clear. They did a biopsy too and fine. They don't know why I'm not responding but I suspect my d&c is responsible. I had 8mg of estrogen plus a patch last time and it was only half a triple layer and only 6mm.

I tried a natural cycle but despite a 20mm follicle it was only 6+mm, so not good. But my periods are heavier than ever.

Mr Jan said he'd try more estrogen but I don't think that's the answer, it's like my body is resistant to it! I like the idea of a natural modified FET. I had my lh, fsh and estradiol levels redone last Friday.

I tried electro acupuncture, vitamin E, beetroot, yoga, Brazil nuts. Everything 🤷🏻‍♀️

I might have a saline scan with Mr Jan if the next one is cancelled. My ivf clinic are aiming for 6.5mm now, which I don't feel great about. Only one embryo left for us x

@VenusStarr It's incredibly frustrating. It must be the D&C's if we've both had issues since then. If your periods are heavier and your hysteroscopy was clear than I think you can be confident you don't have Asherman's but then what is it? Part of me thinks I should just cancel the cycle now anyway and get an appointment with Adrian Lower asap but I don't really want to add a third clinic to the mix if I can help it. Not to mention the cost.

What dose of estrogen are you on @Ifitistobesaid ? It's frustrating as no one seems to know why this is happening. Before I started fertility treatment my lining was nearly 10mm, triple layer. But since fertility treatment, immune protocols and now a d&c, I've had so many issues (I naturally passed my other pregnancies).

When are you back for another scan?

@VenusStarr I've been on 6mg per day but as of today that's increased to 8mg. Have my next scan on Friday. I wonder if all the treatment I've been having has done more harm than good and upset my body's natural rhythms. Have to say I'm feeling very scared right now.

Ladies, do I need to have had a period following an Manual Vacuum Aspiration procedure following a missed miscarriage, prior to seeing Dr Shehata? It’s going to be 5 weeks since my MVA and there’s 3 weeks till my appointment with Dr Shehata. I’ve not had a period and no sign of it either. Do they do an internal scan at this initial appointment at CRP? If not, I may book a private one for myself.

@Sophi81 typo in earlier response. His basic *sperm sample was normal. His SpermComet showed high DNA frag.

@Ifitistobesaid sending you lots of luck for Friday. I haven’t reached this stage of treatment yet so can only imagine how you’re feeling.

@MyEasterEggs all this stress is making me munch on all sorts of rubbish 😭
I'm on ino-folic too. I will look into the trials at Tommys. Is there a waiting list? I'm not sure I can do naturally though as I can't even get pregnant plus CRP advised not to if I'm not on the meds. I am in Windsor.

@Ralowi I'm sorry to hear you had 6 losses! That must be really traumatic for you. I thought the younger you are the better the rates for ivf? Another reason I'm sceptical at 41 😭

@VenusStarr omgosh I didn't know d&c can do that to you. So you only have one embryo left so only 1 chance: that must be very stressful for you! I really hope it works for you x

Does ivf work on your cycle? So if I contact CRP to get the ball rolling would I have to wait for my period to start or can they do it at any point?

@Sophi81 Im not having ivf through CRP. It’s with Create.
I’m waiting for results on the tissue testing. Have you had previous mc tissue tested?

@birdbybird first mc they said was fine, 2nd one they lost the tissue, 3rd one I can't remember what happened to it. It was a chemical so not sure if that would be tested? 4th one started as a twin pregnancy but lost one so wasn't tested.

And now I can't get pregnant for some reason 🤷🏽‍♀️ just so tired of this all. Been reading your comments and I didn't realise how many complications you get even with ivf 😬

@Sophi81 how did you find out they lost the tissue with the second? Is it when you contacted them?
I am worried about this happening!

@birdbybird one they said the tissue is. It significant enough for testing even though I showed them to tissue and asked if this is ok to which they replied yes 🙄. The other one they couldn't find the test results so after weeks of chasing they said the results have been lost 🤷🏽‍♀️ so that was that.

@Sophi81 I’m definitely not giving the nutrition 100%. We all need to cut ourselves some slack on this rollercoaster!

Not sure if there’s a waiting list for Tommy’s. Pretty sure I got a referral letter from my NHS consultant at the time then made an appointment over the phone. That was a few years ago though so perhaps things have changed. Best bet is to call.

The thing with Tommy’s is that when you’re on a trial you have to accept that you may get the placebo, and at 41 (just noticed your age) I wonder if you really want to be experimenting when you could be getting on with further private testing and treatment. Have you had an EndomeTRIO? Has your partner had a SpermComet? As well as being treated for immunes, thyroid and PCO, my partner and I both had treatment relating to these tests, and I’ll also be on aspirin and clexane due to a PAI-1 polymorphism paired with an MTHFR gene mutation which can raise chances of clotting apparently. I could go on…all I’m saying is carrying on down the NHS and Tommy’s route is something I have later regretted as I’m going into my seventh year of secondary infertility now.

Tommy’s were also straight up with me and suggested I didn’t take part in their trials because my NHS consultant was prepared to prescribe the drugs they were trialling - aspirin and progesterone at the time - and now I believe the trials relate to doxycycline or similar which you can easily get hold of. I don’t say this to add to your load but with a lot of understanding because I’ve been there, clutching at straws, and the only way out for me has been to invest in private care.

I still don’t know if it’s going to work, of course. But I feel more confident than I ever have now we’re doing IVF. I think it’s given me some kind of peace knowing I couldn’t do any more than I am doing. I’d be happy to DM you with a list of my tests/results if it might help you consider next steps.

Hi @MyEasterEggs Would you be able to DM me your tests /results if you’re ok with it? I’ve done one ivf cycle and starting investigation with Dr S but at almost 42 don’t feel I have much time left.

Absolutely @birdbybird I just didn’t want to overload the thread or cause unnecessary distress because I know how overwhelming it can be. I’ll DM today!

@birdbybird I wanted to ask are the fertility clinics quite accommodating to 41 and over? I spoke to one and been on websites and it looks like they are more towards 39 and under. Plus I don't even understand the terms they use like FET etc🤷🏽‍♀️. Also when I'm looking at the price list I don't know what applies to me or the actual total cost. I came across one site that offer 2 cycles for discount for 40-44 year old and PGT-A is free??? It doesn't make sense to me.

@MyEasterEggs thank you I think you are right I really don't have time to experiment. Can I ask how long this ivf process takes if I was to approach a clinic. I'm in 2 minds about just going local or going CRP. Do clinics more or less charge the same? Yes please if you could DM me that would be great thank you 😃

Hi @Sophi81 the fertility clinics didn’t have a problem with my age although they said if I was doing pgta testing to do 3 cycles as I may not get a normal embryo with one cycle.

Fet I think it stands for frozen embryo transfer. Pgta is when they test the embryos to see if they are normal as being normal means less chance of a miscarriage. Pgta can be expensive but I’m having it done after miscarrying my untested embryo.