Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@Sophi81 good look with the test today even though I know you are not feeling hopeful.

In relation to the pituitary tumour, apparently if it stops producing enough hormones to support a pregnancy that can stop you from ovulating (including estrogen). It's more common in people with existing pituitary disorders although mine has always been quite well controlled and no issues when I had my son. I am still ovulating for now so maybe need to stop worrying about everything so much

Yeah very hard to accept. Maybe I would need some counselling at that time. I try to tell myself I might have a nightmare second child who my first doesn't even get on with lol x

@Ralowi it sounds like you’re taking the right approach for you and that’s what matters. Your wee boy also sounds very relaxed, which is lovely!

My little one has always been baby obsessed and with little cousins coming along, and all of them having siblings, I think it’s added to the upset of her brother not being here. But after losing a close grandparent she also seems to understand that loss is very much a part of life. I hate that she’s had to learn that so young but I have the experience of losing a parent at 7 so I feel fairly confident navigating it. She has no idea about our subsequent losses though as I do think that might be a bit too much for her to handle.

My period has finally arrived after a longer cycle (I had an mock cycle last month and think the meds played havoc with my hormones!) so I feel like I can begin properly planning for FET next month. It’s a scary thought but I think I’ll feel ready when the times comes. Just got to stop eating so much rubbish now!

Hope you have a lovely Sunday 💛

@MyEasterEggs yeah it's great shes at an age to understand it a bit better as you'd not want her to think you weren't trying, but I'd probably also leave out your other losses. If I ever get pregnant I won't be telling my son till 12 weeks as he would tell everyone and it's obviously a really high chance for us of another loss. Having said that I've had to tell so many people what's been going on just because I'm forever cancelling plans and feel like a rubbish friend. I do sometimes regret that now though and I end up always having to talk about it.

Yes I have been trying to lose weight in advance of the pred but I could definitely try harder!! X

@Ralowi I’ve started to ease back onto my nutritional plan but it’s hard to get into the right head space. I had my first IVF consultation way back in January and knew it would be a long process for us to get to transfer due to all the testing and treatment we needed - we had male factor problems to address too - but it’s been way longer than expected, mainly due to my decision to take breaks after treatment cycles. So hopefully I can stay the course and quit with the self sabotage 🙃

Heading down to London for the day for some final tests tomorrow and I ordered all my meds yesterday so taking steps in the right direction. What’s the next step for you?

@MyEasterEggs we are going to CRP beginning of sept for ovulation intralipids and I will begin on the pred then too. But I really think it'll just be one shot. I've not slept without sleeping pills for the past week and at least when not preg I know that's an option. Having said that I've always slept better in pregnancy. I do think I have low estrogen unless pregnant 😫 also I eat rubbish when tired so it's a vicious cycle. I swear the insomnia is related to my cycle in some way as it just comes out of nowhere. Fingers crossed for you, ivf does seem like a long process but it's giving you the best possible chance. I could go through all this and just release a bad egg next month!! X

@Ralowi could you ask for oestrogen? Would it give you peace of mind? If you’re naturally low I’m surprised they’ve not added it into your protocol. I’m sure someone else on this thread is doing a natural cycle or similar with oestrogen. @VenusStarr maybe? Sorry if I’ve got that wrong!

@MyEasterEggs it's so confusing because from what I've read if you don't have enough estrogen then you wouldn't even ovulate but I definitely do. My endocrinologist didn't seem worried at all and didn't even want to repeat the tests, it was only dr Shehata who asked for that. So frustrating having to do all the leg work myself!! I'll just have to see what the next set of results come back like. He told me to have them between days 1 & 3 of my cycle and I went on day 1, so I'll try day 3 next time. But either way they were all way out of even the lowest set of ranges. Would be interesting to hear @VenusStarr if you have had similar x

@Ralowi I’ve always had mine on day 2/3 but not sure it makes a difference. Did Dr S want you to repeat or was he okay with them?

Seems I was lulled into a false sense of security the other day and I’m still waiting on AF to arrive. Gah! Hate all the waiting and not knowing what’s happening and when!

@Ralowi I've used estrogen in a superovulation cycle. It naturally suppresses ovulation though. So just taking it in a natural cycle wouldn't work as you'd likely not ovulate unless on stimulation medication. I use it in ivf, but that's to ensure I don't ovulate, so they take over my cycle.
If I recall my estradiol level was on the low side (in range) but Dr S was not concerned.

Hope you're out of limbo soon @MyEasterEggs x

@MyEasterEggs oh that's annoying, I hope it's not too long. Dr s told me to have the tests re done on day 1-3 this month. I suppose they might be slightly higher on day 3 but I can't see it being enough. The numbers were just so worrying! @VenusStarr thank you that makes sense. I feel like I need more but not too much, why is everything such a fine balance? Maybe my body will reset itself naturally x

Bad news at my scan this morning at the IVF clinic. Should be 7 weeks but measuring 6+1, possible heartbeat but very slow and they couldn't measure it. I've been referred to the EPU who are scanning again tomorrow.

Just feels like no matter what we do I can't get past 7 weeks. This will be miscarriage number 7 (3 chemicals and 3 miscarriages so far, never had a good 7 week scan).

I'm on prednisolone, fragmin, Cyclogest.

This will be the first mc under the CRP clinic, does anyone know what happens next with the clinic? Follow up consultation presumably and maybe a med change? Hydroxy maybe?

Urgh this is so shit.

Hi @Amy00 so sorry to hear that, it sounds so familiar and it's rubbish. Did your results show high nk cells or both high and active? The only difference in my plan is the ovulation intralipids which are meant to reduce the activity of the cells. I haven't started it yet though x

@Ralowi ah yeah I'm on the intralipids too. Just forgot to mention as I take the others every day! I had high NK numbers and high activation.

We didn't do genetic testing on the embryos with IVF so I'm sort of hoping it's a chromosomal issue this time and all the treatment is doing it's job, and could still work next time. I know there are ladies on here that the protocol hasn't worked for them though, sadly.

We will try and send it off for testing - absolutely grim I hate this part of "collecting" it.

We have one more embryo frozen I think we will go ahead with the genetic testing on that one now just to rule out chromosomal issues. And if it doesn't survive the process then to wasn't meant to be and we will go again another full cycle and hopefully get more embryos.

Still just processing my thoughts on it all.

@Amy00 ah right I thought that could have been the solution. I feel for you right now, every time it happens to me I just think I have to get through it eventually it will work out. But can't deny reading about people who have still miscarried on the plan is a big worry, I'm not sure I've got it in me anymore x

@Amy00 I'm so sorry to hear this 💔

My loss last November was measuring 2 days behind with a heartbeat (but they didn't say slow), but they couldn't visualise the yolk sac.

We're the same, I don't make it beyond 6+2 (4MMCs and 2 chemicals).

I was on pred, hydroxy, intralipids, aspirin, clexane. My diagnosis is very high nk cell activation (normal nk levels). I had a d&c and waited for cytogenetics as it wasn't a tested embryo. We saw Dr S after and as she was healthy, he added in gcsf. So I would expect a protocol change.

We're trying to transfer our last embryo bit not making it to transfer so far (think I'm heading towards another cancellation). I thought we might do another cycle but not sure now. I'll have been under Dr S 2 years in November.

I'm so sorry this is happening xx ❤️

@Amy00 so sorry to hear that 🥲

Sending strength your way @Amy00. Sorry to read your news 😔

So my pregnancy test was negative ☹️. So frustrating but predictable 🙄.

@Amy00 so sorry to hear your news. But please try and stay positive as I was told the same thing during my early scans. In fact they never even found the heartbeat at 6 weeks and I was told by Dr S to go home and rest as I'm most likely to miscarry and they will rebook me in 2 weeks to kinda confirm the news. It was the most horrible 2 weeks of my life. I was so depressed and sad but at the scan 2 weeks later bubba was still there 🤷🏽‍♀️. So unless they have confirmed the worst try and stay positive 🤞🏼. Thinking of you x

@MyEasterEggs @Ralowi
I just don't have a clue about anything anymore. I don't even know why protocols are changed if I'm not even getting pregnant. I am so full of drugs and nothing came out of it. Yet my successful pregnancy from the same clinic I was on a lot less drugs. How does that work? Well it obviously doesn't as I'm still not pregnant 🤷🏽‍♀️
It does make me question why CRP give drugs at the point of ovulation rather than at pregnancy. Surely then we wouldn't need to take drugs unnecessarily.

Can anyone shed any light on what the protocols are if you go through ivf As in are you taking the same drugs or different ones and also would I still
have to take all the drugs I'm taking on top of that whilst I was on the superovulation plan? How long do you take the drugs on ivf etc?

also just wanted to say that it’s nice to see some people have finally managed to get appointments with prof s as it’s been 6 months since I saw him last. Got my fingers all crossed for you all with whatever is on your plan next xx

@Sophi81 I suppose IVF is slightly different for everyone, and I’m not sure what your general protocol without IVF is, but this is my plan:

Oestradiol 2mg twice a day starting from CD2
Bloods and scan on CD10 to check lining and levels (possible increase in Oestradiol if needed)
Lubion injections (progesterone) 25mg twice a day starting five days before transfer
First intralipid infusion five days before transfer
Prednisolone 20mg once a day starting three days before transfer

Day after embryo transfer start Aspirin (once in the morning) and Clexane (once in the evening). Levels of these drugs will be determined by the TEG test I had yesterday. I saw Raj Rai at St Mary’s and he’s not convinced either will benefit me as they didn’t do anything in a chromosomally normal pregnancy so the test will clear that up.

Second intralipid infusion four weeks after first infusion.

Raj Rai also suggested testing my antinuclear antibodies due to other immune related issues I’ve had so Hydroxychloroquine may be included. I believe some of you are on this?

And he’s testing my diamine oxidase activity. Never heard of this but it relates to histamine intolerance and deficiency of diamine oxidase can interfere with pregnancy. So I’ll report back on this. I think it’s just treated with diamine oxidase supplementation.

At my own request I also had a Homocysteine test (I have MTHFR mutation that can affects levels so want to make sure these are in normal range before FET) and Toxoplasmosis test (I have a cat). A friend had a loss and later tested positive for a few infections including Toxoplasmosis so it’s always been on my mind. (Even though I avoid cleaning litter tray 🙃)

I’m also on Metformin 500mg twice a day as it’s been been shown to help in RPL cases.

And…a crazy amount of supplements.

I’m not under Dr S care because I couldn’t get an appointment and decided to ask my IVF clinic to handle it all. Plus I wanted to simplify my care.

I know of three RPL cases that my clinic has successfully treated in the last year (having seen on Instagram) on a similar protocol so I’m hopeful that IVF and this treatment plan could work for us. If it doesn’t, we’ll accept it wasn’t meant to be, as I don’t think we’ve left a stone unturned. We had male factor issues to overcome too so it’s been quite an intense 7 months since our first appointment back in January!

But we’ve got three embryos so three opportunities to try and make this work now all major testing is done 🤞🏻

@MyEasterEggs I didn't realise it was different for everyone. Is St Mary's in Paddington? Can I ask what was the reason you chose this hospital? Do you live local to it? It is so difficult for me to get to Epsom but Paddington is just 20 mins on the train for me. Also isn't it expensive or does IVF generally cost the same wherever you go? Wow that's a lot of medication. I was under the impression that only dr S does the intralipids and uses hydroxycholoquine. I stopped hydroxy bcos my hair fell out and to be honest don't wish to go on it again.

What does RPL mean?

If I decide to go through Dr S for IVF getting to my appointments will be an issue especially if I have to go more than once a week even though they said I will get it at a discount 🤷🏽‍♀️

How are you coping with IVF physically? Do you find it painful or do you just tolerate it for the sake of what could come out of it? It's so unfair that we all have to go through all this. Why can't things just be normal 😩.

My period started today and my husband and I decided not to do anything this month! We are just so tired and thinking whats ivf going to do to us if we are already knackered 😂!

I will probably book 2 weeks off work if I go ahead but we will want to start next month if we do.

So with superovulation you have to wait for ur period to start before u start the plan, is that the same with ivf or can they start at anytime?
Basically dr edge has got me on all the meds they provide by the looks of it and I have no idea why considering I conceived on just pred, Cyclogest and intralipids

To All of you who have started ivf treatment, I don't know how you are all still standing after all those meds. Well done to you all 👏🏼 I think I'm going to lie down 😂I'm so exhausted

Hi everyone. I've had a really bad week of poor sleep, it's really getting me down and making me question how I can cope with even more meds and actually potentially being pregnant. The insomnia just came from nowhere after weeks of good sleep although I do have a history of it, it's been so much better recently. I've questioned whether it's linked to my cycles in any way but I've also read that coenzyme 10 can be a cause. I'm on 600mg and thinking if this has affected my sleep so much how will I cope on the pred and not taking any sleep meds (which make me feel awful but I take them as it's better than nothing). Anyone else had this with the supplements? X

@Sophi81 first of all, I had the same fears around IVF, so it took me a while to feel emotionally prepared because it does add to the mental load of infertility. But it’s been the right thing for us as with my partner having ICSI (injecting sperm into eggs, after treating a hidden infection), then 4 out of our 7 embryos still being abnormal, we know IVF has helped us overcome at least two major hurdles. And it’s not painful, not in my experience anyway, you just need a lot of patience I think.

I’m with The Evewell on Harley St. I only went to St Mary's in Paddington for the TEG test to see how much clotting medication is needed, if any. Pleased I did as he generally helped me feel confident about next steps and suggested those other tests.

I live in the Scottish Borders now so this is quite a big commitment for me. I stayed in an Airbnb during my round for egg collection and with a friend during my mock cycle. I’ll stay with her again when I do my FET cycle as going back and forth is too much. I got up at 5am to drive for 90 mins yesterday, then had a 3.5 hour train journey plus tube to get to my appt. I was exhausted when I got home at 10 last night! Being self-employed makes it all a little easier. The hardest part and biggest sacrifice is being away from my seven-year-old but we’re fortunate to have family who make it a fun time for her and there’s good old WhatsApp!

With IVF there are long and short protocols and I’m on short so start the drugs on day two of my cycle. Happens to be today but we’re taking this month off too. Waiting for these final results and also getting my arse in gear because I haven’t been eating well or moving much!

IVF varies in cost. Some clinics do charge more than others. We sold our home to release the equity last year and wouldn’t have been able to do it otherwise. We’ve eaten into about half of our future savings. Makes me feel a bit sick but we decided that not trying again would be worse than never knowing. Hopefully we won’t have to spend too much more 😬

Wouldn’t you quality for IVF on NHS?

RPL is recurrent pregnancy loss. Sorry! So much lingo!

@Ralowi I haven’t experience this but I was on Ubiquinol rather than CoQ10 so not sure if that could make a difference? I have sleep issues and something that helps me is guided meditation. I have sleep headphone and nod off to something from
Insight Timer. Not ideal but helpful for now. Hope you sleep better soon 💛

@Ralowi sorry to hear you are experiencing sleep issues. I have read previously that prednisolone affects sleep and Q10 but I've not had any sleep issues. In fact I'm so tired and exhausted everyday that I'm knock out by 10pm. I'm putting that down to being unfit and maybe a little overweight. I’ve recently stopped q10 also as it’s so expensive from Holland and barrat and I don’t even know what it’s for or if it even works.

Has anyone changed their diet to help with fertility/pcos? I just eat junk as I don't have time look into this and to be honest not sure if it will help anyway.

@MyEasterEggs thank you I will try that. I used to listen to a paul McKenna hypnosis track which I thought worked but when I stopped using it I still slept fine. I know half of this stuff is probably placebo. I feel like my sleep issues are always there but I often have periods of great sleep and then something can trigger it again. Then the anxiety will start up again and I get stuck in a vicious cycle. Hence why I'm so worried about these meds and just don't think I could cope. If a supplement has affected me this much imagine what the pred will do

@Sophi81 the q10 supposed to help fertility but in what way I don't know! I did try a sort of fertility diet for a few months and during that time I didn't even conceive! So personally don't think there me much in it.