Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@Ralowi could you maybe stay in a local hotel rather than keep making the 7 hoir journey there and back? I know its more money but if you found a premier inn or something similar in the grand scheme of things its not that much extra and might make things easier?

@Tgrf55 that is an option and we've already looked at staying over night before and making the most of the local attractions (probably Legoland) but we can't do it this week so it means holding off now for another month, or risking it with the pred alone and having intralipids on positive test x

You have to do what feels right and works for you @Ralowi , I'm not under Dr S's care but I would feel similarly to you if I was asked to go for ovulation intralipids every month. It's not an insignificant time commitment when you live far away and it's harder still when you have to factor in childcare to make the trip as well. As much as we all want to give ourselves the best possible chance of a positive outcome, you should be free to choose all, part or none of the treatment plan. If you want to try without ovulation intralipids, is it something you can potentially come back to if you don't have success on the plan without it?

@Sezmarelda1 thank you, yes it is something I could change in future. When I saw dr s for the first time he asked me to have my FSH, LH and Oestradial checked at my gp. At my follow up he didn't mention it but I've now got the results and all of the numbers are out of reference range (too low). I'm so confused, I have obviously done a goodie search and it's saying this is secondary ovarian failure caused by problems with the pituitary gland. I have a pituitary tumour but I take medication for that. I also read that this causes problems getting pregnant which is why I'm confused as that isn't our problem. As far as I can tell there's no link between this and miscarriage. I thought I finally had my problem diagnosed but now there seems to be more

Hi all sorry to post again! I'm just really confused and fed up at the minute. It doesn't look like I have ovulated at all this month and this never happens. I know this because I have managed to get pregnant nearly every month for the past year. I've had some tests done on day 1 of
my cycle for FSH, Oestrodial and LH and all have come back outside the range (too low). This can be linked to pituitary disorder where the pituitary gland doesn't release enough hormones for you to ovulate and you then get secondary ovarian failure. So either I've just been lucky to ovulate all this time or this is a recent problem. The only things I've changed is to take the additional vitamin d and coenzyme q10 prescribed by dr Shehata. I can't see this being a cause. I feel like I need estrogen supplements which is basically hrt isn't it? Is anyone else taking estrogen? I'm also wondering if this is to blame for my poor sleep. Any advice welcome! I will try and get hold of my endocrinology consultant and I have emailed the results to CRP x

Hi,

I'm on my first month of superovulation with Prof S. I had the trigger shot over 72 hours ago, but I haven't had a rise in my temperatures. I use Ovusense (vaginal sensor) to monitor my temps (which are usually very predictable.) Will the trigger shot (Ovitrelle )effect them?

Thanks so much

Hi @ForestThrills

Just wanted to reply to hopefully reassure you. This last cycle, I did my trigger and my temps kept going down. Didn't help that the first part of my cycle was the heatwave (I use a wrist sensor) so even though I expected some weird temps, I was still so worried it hasn't worked.

Sadly the cycle didn't work, but my period came bang on time, so I can only assume I had ovulated. So the temps weren't a reflection on what had happened.

The clinic always say not to temp, as the meds throw them off but I just couldn't help myself. In amongst my panic I also found a faq on fertility friend re the trigger. I've posted it here. Hopefully this gives you some more comfort!

Good luck! xx

Nice to hear from you again @myrainbowjourney 👋

@Ralowi could it be worth repeating the blood tests on another cycle? It's not something I'm overly knowledgeable about to be honest, but I know we can all have an odd cycle from time to time and these blood tests are just a snap shot. Let us know if you manage to find out any more from your doctors.

Today would have been my due date for the little boy I miscarried at 14 weeks back in February. The hospital took a few memory photos of him for me and I've just had another flick through and shed a little tear. This journey is just so hard 😪Today I'm 6 weeks pregnant and hoping all the meds I'm on will keep this one going 🙏

Hey @Sezmarelda1

lovely to hear from you too, and huge but gentle congratulations on your lovely news.
Sorry you are struggling today, it’s always hard reaching these milestones so let yourself feel all the emotions. Sending so much love to you.

Sorry I’ve been quiet on here, I went through a very negative stage and I wouldn’t have brought anything useful or productive to the chat. I’m trying to trust the clinic and what they are doing, otherwise I might as well not be paying for their help. Think I just struggle with the total lack of control. It’s such a hard journey isn’t it. Keeping everything crossed that there will be good news soon.

I really hope things continue to go well for you. Are you having the scans every 2 weeks? xxx

Thank you for the support @myrainbowjourney. I'd noticed you'd been very quiet but didn't want to intrude by tagging you if you needed some time away from it all. Sorry you've been in a crappy place. It is so, so difficult, but know you are not alone.

I have my first scan on Monday, then the plan is to have a scan every 2-3 weeks until 14ish weeks (which is when 2 of my losses happened). I'm trying not to get carried away with thinking too far ahead, and just take each day as it comes. Easier said than done though! For now I'm just focusing on getting through to Monday and trying to keep myself busy!

@Sezmarelda dr s has said to repeat the tests next month as they are very low. So I feel a bit better about not trying this month as I'd rather know what's going on. Just sat trying to plan an overnight stay so I can have the ovulation intralipids at the end of this month. Going to just try it all first time and see what happens. I can't imagine going down every month and staying over.

Sorry to hear about your tough day, I didn't realise your losses were at 14 weeks. I really
hope this one works out for you x

Sorry they totally posted on the wrong thread 😣 I can’t delete them either. Apologies ladies 😘 xxx

Hi ladies, I’ve been a little quiet as dealing with a house move among other things, but as I’m getting my head back in the game for FET have a question. Did any of you have intralipids at home? I came across a service that offers it and it’s appealing to me because it saves me making the five hour journey to London for treatment, which is 10 hours of travel as I’d return same day. I just don’t want the stress of it before and (if I’m lucky) during pregnancy. Plus I can save at least £150 on each infusion, not to mention the cost of train tickets.

Had a brief catch up on the thread and it’s good to see some positive news. Gives those of us who are still in treatment or jumping through hoops some hope 💛

Hi @MyEasterEggs welcome back, I am fairly new to this thread. There is a company called the fertility pharmacy who will do intralipids in your home with a prescription. However if you are under dr Shehata like me he won't allow it anywhere other than his clinic. So I'm in a similar boat to you as it's a long journey for us (7 hours there and back, more if there is traffic). I believe if you are undergoing ivf come clinics do them x

Thanks @Ralowi that’s who I found! I’m with a different clinic so I’m going to suggest it and see what their response is. When you weigh it up, 7-10 hours of travel is a bit rubbish unless it’s absolutely necessary. Where are you in terms of your treatment? I’m just psyching myself up for that next big step now 💛

@MyEasterEggs sorry I'm sure I typed out a reply but I must have not posted it. We have just recently had our follow up from initial bloods confirming high and active nk cells and treatment is prednisolone and progesterone from ovulation plus ovulation intralipids. We aren't trying this month as it's the school holidays (I have a 4 year old who I now believe to be a miracle child!!) and I can't bear being on all the drugs while looking after him. Have just booked a night in Epsom at the end of the month and we are going to go to Legoland while down there. Which is nice but I can't do that every month. Have you managed to come up with any kind of solution? It's really annoying because I know crp used to allow it elsewhere but they have since changed their minds. I'm feeling like we'll only end up giving the ovulation intralipids one shot. We are both in two minds about whether we can really go through any more of this, emotionally and financially. In that case I would have to find peace with not having another and be extra grateful for my son x

@Ralowi I’m at a similar stage with the same treatment plan for immunes. I’m also going to be on oestrogen, aspirin and clexane. I hope that’s it!

A nurse called today and said they could write a recommendation for my GP to prescribe intralipids. Legally the clinic can’t prescribe them apparently. I’ll be having them 5 days before FET, when I start progesterone, then four weeks later if the transfer is successful. Apparently it’s just two infusions? I thought it would be more. So I might stick with the clinic for the first as I’ll be staying with a friend in London during FET cycle anyway, then maybe use the nurse service for the second.

I can appreciate where you’re coming from re the emotional, physical and financial toll this can take on a couple. When trying naturally we invested an eye watering amount in testing, treatment, nutrition, supplements and medication over three years. I ended up taking a long break after our sixth loss - a bit of time to put myself first again - then we decided to try IVF. My daughter is almost 8 and is on this rollercoaster with us, to some degree, because I felt we had to be open about things. And she’s been surprisingly understanding about the fact it might not work. We were lucky to get three embryos so hopefully we get to bring one of them home.

Wishing you lots of love and luck and let’s stay in touch as I’m going for it next again cycle too 💛

I find it so annoying how everywhere recommends different things! I suppose at the end of the day there's no real science or formula behind all this. At crp they want you on monthly intralipids. I think that's up to week 12 or 16 but I can't remember now. And twice weekly scans also so you may as well do both. I'd feel a bit better about the travelling if I was actually pregnant even though I know there's still a high chance of another loss. Interesting about the estrogen, how did that come about? Just I recently had my fsh, Lh and oestridial checked and all came back really low. I've been asked to repeat them in a month but I'm worried i need more estrogen. I'm also on aspirin, pre natal vitamins, extra vitamin d and coenzyme q10 which dr s puts everyone on. It's so hard isn't it with a child, I know this is taking my time away from him and at the end of it all we may not even be successful. But just keep going as we're in so deep. My husband says I need to stop seeing it that way and im like a gambler chasing my losses! We could end up with even more losses or we could be successful. It's just so hard not knowing x

@MyEasterEggs yes keep in touch and wishing you luck next month!

@Ralowi I often feel bad about the time and cash spent. But I suppose we’ll be able to say we did everything we could?

My daughter seems to have a grasp on the fact every family is different and we don’t always get everything we want. So I think she’ll accept it if it doesn’t work. The conversations we have with her at 8 are quite different from the conversations we had when she was 4 though so I’m not suggesting you open that can!

Things were different for us because my second pregnancy ended in the second trimester. So there have always been questions because there was a belly and then no baby and six years later still no baby. So that’s definitely added to the complexity of secondary infertility.

The oestrogen is part of the FET cycle so relates to IVF treatment. I start taking it on day 2 of FET cycle and I’m on it for up to 12 weeks. I find all the drugs hard too 😕

I should add that this is the first time I’ve had treatment for immune issues among other things, and it’s been almost three years since my last pregnancy, so that’s why it’s been six years!

Hi everyone

Sorry I haven't posted in a while. Just had a lot going on. And after being mutilated by the HyFoSy procedure, I ended up with an infection so am currently on antibiotics 😩.

@Trytryandtryagain11@Amy00 @Sezmarelda1 many congratulations on your positive results! I hope and pray everything goes all smoothly🥰.

I am thinking of each of everyone of you on this thread during this hard and difficult journey!

I am due to do my pregnancy test tomorrow morning to see if I get my big fat positive but to be honest I'm not feeling very positive at all as I have had no signs of pregnancy since I have been on this plan for past 6 months. Frustrating, annoying, disappointing and at times just fed up and tired with it all. It's really bizarre how it can work once but not again? Just really bizarre. It is just so draining, physically mentally and not forgetting financially 😩

I have thought about the ivf route since my last post but again the treks to Epsom are so off putting. I have to commend all you who are travelling from sooo far to attend your appointments and I only live an hour away! As for finding someone local for ivf it's about weighing everything up and also trying to get my husband to understand it as I don't think he wants to go down that route....yet 😩

@HoldingOn2Hope I believe hydroxy totally ruined my hair. Even though Dr S doesn't think this is the case but my hair was fine before then.

@birdbybird wishing you well at your appointment. I been trying to get an appointment with Dr S for nearly 6 months with no success. Hopefully fingers crossed I might be able to next month but I'm going on a break from all this medications for a month if I am not pregnant tomorrow and then decide what to do next.

@Ralowi how was your appointment with Dr S? I haven't seen him for months and I find that quite frustrating at times. I also have a pituitary tumor but I still managed
1 successful pregnancy since so not sure why this would cause issues? I was put on progynova last month and this month which I believe is hrt to thicken the lining which did work but still disappointing to find I only had 1 follicle even though my Letrozole was upped to 10mg . I feel the same way as you about just trying to find peace with not having another but finding that very difficult to accept.

@VenusStarr I have used my last GCSF this month. I’m not buying anymore unless I get the bfp. It’s just too expensive. Especially now that Dr Edge wants me to start on the gonal injections if we try again on superovulation. Not sure what to do now. Maybe the break will does us good but don’t want to waste a month either. How is your treatment coming along? X

Sending everyone love and well wishes xx

@MyEasterEggs I agree, we weren't even sure whether to have the testing for nk cells as there was a chance we wouldn't do anything with the results and it wasn't cheap . But in years to come I can look back and say we got an answer and tried it (even if we do only try it once).

That's really great that she understands, I haven't mentioned anything to our son. In the past he's mentioned having a brother or sister a couple of times and I've just said it's not that easy and he's not pushed it. He's never mentioned it since and I genuinely think he's happy being an old child. I can imagine that may change when he's older but he's never going to get a brother or sister he can play with like his friends!

I sometimes do think ivf would be better for us, we've not had problems getting pregnant I still don't know what the quality of our embryos are like. Then I could maybe find a more local clinic that does the intralipids

Sorry to hear about your second pregnancy, that sounds awful. It's bad enough getting through the first 12 weeks but can't imagine the pain of losing one in the 'safe zone'