Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

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The heartbeat is such an important milestone, it's looking really positive. Like you say, hopefully all the medication is doing exactly what it's supposed to do.

I hear you on the private scans, my experience with Window to the Womb was awful- I suppose I should have expected that for £70. When I asked what would happen after my first MMC was diagnosed the response was "I don't know, I'm not medically trained" unreal. I've since had a scan at a private hospital post miscarriage and the experience was the polar opposite.

Keeping fingers and toes crossed for you x

Hoping one of you can help me with a query on the intralipids. My current plan is to go in on 25th July- right before we go away that evening. Wondering now if that's a bad idea and I'll be in no fit state to travel?

I could move it to earlier in the week, but equally then I'd still have to work.

TIA x

@Fletchasketch hey sweet have you had them before? I’ve had them loads and never had an issue just a funny taste in my mouth for an hour or so after, I think
jecca felt a bit funny when she had them the last time. I asked the lady who did mine and she said she’s had a couple of ladies go a bit funny but nothing major. So
id say chances are you’ll be fine but if it’s no bother to move it then move it and then no stress xxx

@Gizmo1983 Nope, this will be my first cycle officially trying since the MMC (Phase 1 seemed to go on forever!) so first intralipids too. Oh that doesn't sound too bad then, a funny taste I can cope with no problem. A Friday will be so much easier as I don't really have work calls then, so will stick to the original plan.

Thanks for the response :). How are you feeling today? A bit better I hope xx

Has anyone else had any experiences on hydroxy? I’ve been on them for 4 weeks now and my hairs already thinning. The past few weeks I’ve been getting waves of nausea and headaches and today have a really bad stomach!
Unsure if it’s the hydroxy or a cocktail of that, letrozole and metformin 🙃.

@Morgan236 I've been on hydroxy a similar amount of time, and aside from a dodgy stomach in the first couple of days I've had no side effects. I think they impact people differently though. I hope the side effects pass quickly for you, doesn't sound fun at all.

Hi everyone! I’m so sorry I’ve been MIA - I needed a mental break from ttc and all reminders of it for a bit 😞

Just catching up on all your messages - so wonderful to see so much positive news and progress!! Congrats and really hoping this is your time@Gizmo1983@Objectiontime@Hopeandfaith1990and @Jecca88✨I’ve got everything crossed for you.

I finished my 7th cycle of Super-ovulation without a single positive so we decided to take a break over the summer. Well not much of a break as I had a hyfosy and saline scan with Dr Edge - she found a polyp so I went straight into a hysteroscopy with Dr Jan a few days later. I don’t think it’s the problem for us but mentally it felt good to have something to ‘fix’ 🥲

@Morgan236Ive been on hydroxy since March and I’ve experienced hair fall too but not the other symptoms you mentioned. I try and take it with food in the morning. I’m really struggling with the hair loss and haven’t been able to do much to stop it and have accepted that it’s just another sacrifice to make. But everyone reacts differently and I really hope things ease up for you with time 🤞🏽

It was amazing to actually see a live bean in there I must admit. I have to be thankful I have got this far x

Morning ladies, another faint test with no change. Not sure what is going on but convinced it’s a chemical or ectopic. CRP says don’t come in for intralipids until the test line gets darker. I will need to send this one on this morning. I am going to try and see if I can get a scan at kings epu. Ideally just want this to go so we can crack on with the ivf next month.

@Fletchasketch i never really had any side effects from intralipids - just make sure you go hydrated so it doesn’t feel uncomfortable going in. I did have a funny turn but o think it might have just been the pain in my arm and I don’t like needles or blood tests lols.

@Gizmo1983 any news on the NIPT results?

@Morgan236 im sorry you have had such horrible side effects from hydroxy. I never really had them but come to think of it when I brush my hair lots does come out.

lovely to hear from you @ALittleLight im sorry it’s been 7 months of super ovulation - that’s expensive and exhausting. After the hysteroscopy - are you looking at TTc again?

@ALittleLight sorry to hear your struggling ❤️. This is such a hard journey! I spoke to my mum about it last night and she said the same, it’s a small sacrifice for a big reward. But when you don’t know when the reward will come it’s hard to see it like that! I’m trying to castor oil my hair every 3 days to see if that helps. I’ll let you know! Xxx

@Jecca88i am crossing everything for you! That’s crazy they can’t find out what’s going on 😔 I know it is so stressful.
so i am 11dpo and 13 days post ovitrelle shot and i got a vvv faint like this morning (first time I am testing on this cycle)… so now i have no idea if I still have some ovitrelle in my body or it is a chemical or a regular pregnancy… seriously why does life play this mind game?! I am mentally drained.. this was on a FRER as well so probably the shot is still there… anybody had the same issue? I am so worried now because of what happened to me last time where I had a very strong line at 10dpo and then a week later they were saying they couldn’t see proof of a pregnancy… I am just a bit sick to look like a joke! Sorry just needed to vent as I have not even told my partner about it this morning. I don’t have much hope as I have zero symptoms!

@Deerdancer34 @Hopeandfaith1990 @Objectiontime Thanks so much. As far as I know, there is only one reproductive immunologist in the whole of Ireland who works on recurrent miscarriage: Professor Conor Harrity in Kildare. I didn't know of him before, but someone on one of the other threads recommended him - she was able to have a successful pregnancy after several miscarriages.

Also, thanks for the podcast recommendation. I listened to Professor Shehata on this one previously: Dr Hassan Shehata - Unexplaine…–The Fertility Suite – Apple Podcasts and it gave me some hope.

@ALittleLight I am so sorry to hear you are struggling with Hydroxy. I started back in March and after a week I stopped because my ears were ringing.. I have started again in May but inc eased the dose slowly and it seems my body accepted it a bit better. I can’t comment on the hair loss as I lose my hair a lot due to my hypothyroidism. But hopefully the effect will calm down once your body gets used to it. Are you taking any other medication?

@CarpeDiem75wow I didn’t know ear ringing was a side effect that is crazy!! Glad to hear you’re coping better with it now!
Im also on metformin, letrozole and Sertraline so I think it’s a combination of everything! I’m doing my first cycle of trying this month. First IV drip booked for next Friday. I’m naively excited and optimistic… for now 😂.
So nice to have this group to chat to you by through the same thing xx

@Jecca88 I'm sorry to hear there's been no progression so far, it must feel incredibly frustrating, especially with not knowing whether you should be going in for intralipids or not. If Kings are not able to scan you, I was once able to get a same day scan at the New Victoria hospital in Kingston, not too far from CRP which might be doable depending on where you are based. I really hope you get some answers soon, and hopefully some good news.

I'm feeling reassured about the intralipids now, I've given blood so often that I'm not bothered about needles- but will make sure I'm hydrated, thanks for the tip. x

@Fletchasketch @Objectiontime my experience at WTWW was horrendous too, I had a male sonographer who just kept repeating 'your uterus is empty' (it was my ectopic) and once they'd found it they told me off for getting off the bed and made me feel so stupid. I actually made a formal complaint, they had no idea how to cope with a 'bad news' scan which is not acceptable.

@Morgan236 I have hair loss on it too, I am quite lucky to have long and thick hair but I notice it so much on the hairbrush and in the shower. Sucks but like others I just assumed I had to accept it. I try to take collagen supplements and geritol for iron to help, not sure how much it does!!

@Jecca88 sorry your lines aren't being conclusive, are you using the same tests every morning? Could you get your Betas done? Hope you're ok xx

@CarpeDiem75 I don't think it would be trigger 13 days later, and a faint line for 11dpo is normal isn't it? Keep testing and hopefully it will get stronger 💕 some people get stronger lines in the evening too don't they, though that would never work for me because I drink so much water.

@TammyinCork Thanks, I'll give that one a listen on my walk later on. Can't believe there's only one specialist in Ireland, that's so difficult. Have you seen them? Can your current hosp refer you to him or is he private?

@Gizmo1983 How are you doing? xx

thanks Ladies, @CarpeDiem75 Can you keep testing? I would say that is a positive. Have you told your partner?

@Fletchasketch I called to have to speak with Kings and they said too early for a scan as its only just over 4 weeks, and since I dont have pain they wont see and just to keep montioring it and do another test in 2 weeks. Do I continue with all the meds for two weeks? do i continue with progesterone - surely that stops bleeding if its a chemical.

@TammyinCork have you looking into Plan your baby or Fertylsyis - they do stuff remotely and i think more affordable, same sort of lines as Dr S.

Hey @Hopeandfaith1990 i honestly don't know why my body would be giving me a chemical or ectopic now - this is my 7th pregnancy and 4th with CRP, i honestly just can't believe it - i just losing the will here. Do you know how you book in Betas? would i ask GP or EPU? or private?

@Jecca88 privately, I don’t think EPU would do it without suspicion of ectopic and I don’t think GP would at all annoyingly. I’d just Google ‘hcg blood test near me’ and find one that seemed good. I found a private clinic in guildford that did it but that might be far for you, also I don’t think it needs to be anyone special/fancy.

It might not be ectopic or chemical, it might just be too early but I think getting betas done is really the only way you can get a proper idea before it’s scannable. So sorry my love if it is a bad outcome :( but I am hoping and crossing my fingers for you so much atm that it’s not xxx

@Jecca88lovely I'm so sorry you’re in this limbo, it’s frustrating not knowing and the anxiety over an ectopic must feel like a lot. I don’t have any more advice than others have given, only wishing you get a definitive answer soon and a way forward🤞🏽 Thank you for thinking of me - I’m going to start taking the meds again and ttc this week. Really not looking forward to all the pills, I was enjoying the carefree weeks without rattling 😬 We will start IVF in Sept and it’ll be our last few months of giving it a good go as I’ll be 44 soon. So we’re just throwing everything we have at it now!

@Morgan236thank you lovely, yes keep us posted on whether the castor oil works for you! I’ve been trying not to wash my hair more than twice a week as all the hair fall in the shower is just too much for me 🙈

@CarpeDiem75good to know that your symptoms eased off! All the side effects and the drugs just makes this journey even harder than it already is 😮‍💨 Can I ask what dose you are on of the Hydroxy? I am taking 20mg Pred, 200mg Hydroxy, 75g aspirin and 400mg progesterone (although I’ve stopped taking this at ovulation). I’m so sorry about your past experience with the testing - I’ve been in exactly the same spot with the faint positives and trigger vs positive vs chemical - it’s horrible having to test so early!! Vent all you need. Keep testing for the next two days and see - fingers crossed for you!!

@Fletchasketchgood luck with the lipids, it’s not bad at all once the needle is in!

@Hopeandfaith1990 just had a message from CRP who suspect it’s a chemical so have advised me to stop all meds except hydroxy. Just got to wait for the bleeding to start. Feel I need a glass of wine tonight now. It might delay the IVF start to after my birthday on the 5th August so that’s a plus. Going away next week to Cornwall so hopefully it will be done by then and it will be a nice time away.

@Jecca88

Oh I’m so sorry my love. Definitely have a glass of wine tonight. There’s no silver linings to this at all but it’s so good that you’ve a break to look forward to and you have your IVF plan in place. Sending a hug xx

@Jecca88oh I’m so sorry! This whole experience is just so hard. I hope you can enjoy a big glass of wine and can get past this cycle. Cornwall will be a lovely distraction I hope! Xx

@Jecca88sorry it makes me so angry when I hear you get advice over the phone without being seen or anything! I come from a country where pregnant women are so much more cared for so I just can’t believe they don’t offer to run some more tests for you…
I have not told my partner I feel like I am a massive disappointment when I tell him that I am pregnant and then I miscarry….not that he would judge me it is all in my head I know!
@ALittleLight thanks yes I will keep testing ☺️not that I have high hopes! I am on 400mg hydroxy 25mg presdbisolone and 800gr progesterone so quite big dosages of everything! I feel more the steroids this time around I feel like I am full of energy and exhausted at the same time! @Hopeandfaith1990thank you so much💕 yes I will keep testing over the next few days… at least this morning I was quite relaxed about it as I was expecting a negative so now I am going to be all nervous again! I really envy these women who announces the world as soon as they have a positive test and everything goes well!!!

@Jecca88 I am so sorry to hear this. Sending you warm wishes... I hope you have a lot of support around you.

I had heard of Plan Your Baby and Fertilysis but thought I'd go straight to Dr S first, due to his high success rate.

Conor Harrity is a private specialist... The HSE (Irish NHS) don't believe in the sort of treatment he does, but I'm sure that if he were to write me a prescription, my GP would (reluctantly) agree to it. Not seen him yet - I will see Dr Shehata first.