Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@VenusStarr a sieve might actually be the most genius idea. Thank you! My husband is already on his way to the supermarket to get a new in the right size 🤓

I am going to read about the expensive injections now. I bet he will add them and to be honest as long as I can afford them I am willing to try anything. I think I have the prices somewhere. I will check how much they cost so I have an idea.

@Amy00 I am so sorry you had to go through so many 🙁 heartbreaking…. It is true actually. It does sound odd to be all abnormal however I know for sure that it can be possible. And I know for sure because we have some friends that went through IVF and they collected lots of eggs but only 2 embryos were normal. I think they originally had 13 embryos.

@MyEasterEggs wow you live so far yet you come to see Dr S all this way ! And there's me complaining I'm struggling when he's only just over an hour away ! Thing is Epsom is just In such an odd place for me that there's like no trains links from where I live. Wow I don't know how you do it. I work in the NHS and because we are always understaffed it can be difficult for me to request time off! I think if we do decide to go down the ivf route then I will book 2 weeks off and hope I can get most of what needs to be done then. And then if it's weekly try and book it on the days I don't work. Don't really know how I'm going to work this just yet.

I used to think it's really strange when I used to hear people say they sold their house or used all their savings to have a child only then to
find myself in the same boat years later. I guess you just don't understand until you are in that situation yourself. Even with my miscarriages I felt really alone as I couldn't talk to anyone and my mum didn't really help the situation either. Even now she doesn't understand what I'm going through and just causes me unnecessary stress so I just don't tell her how I'm feeling anymore. I just cry alone in the night and then wake up fresh the next day ready to start the day.

@MyEasterEggs apparently I don't qualify for ivf on nhs. They bluntly told me that on a routine visit to my gp when I was 35, they just shouted at me and told me not to come to them if I can't get pregnant bcos they won't be able to help me. And at that time I didn't know I had any fertility issues I just went For a random checkup and got blasted!

@Ralowi I been taking q-10 for 6 months now on the plan and not even got pregnant once so not sure it works 😂 and for the price I'm paying I'm not sure anymore. I've stopped all medication this month and having a break. Just so fed up with it all. Did you manage to sort your sleep out?

@Amy00 I know I said this before but after reading more of your posts I don't know why but I'm still feeling really positive for you. I know the baby is measuring a week behind but it's just similar story to mine. My baby never did catch up to be honest and in the end was diagnosed with IUGR. It was a high risk pregnancy right from the start till the end. I've got my fingers crossed for u xx

@Amy00 lol @ Dr S being blunt😂. Thanks for the link. It's showing as one clinic 4 miles from me. The only thing is CRP said you get discount if you have had superovulation treatment with them. I'll have to check and weigh it all up to see what's best for us. But for this month I'm off all drugs and just don't want to do anything 😂. Although I do need to sort my diet out! I'm just living on junk because I'm just too down
to think about cooking 😩

Also the nurses emailed me yesterday asking me to get my AMH checked with my GP. So I rang my gp and they told me they don’t do it anymore and the fertility clinic has to do it, I told them the clinic asked me to get it done from gp? They then mentioned that it’s not an accurate test hence GP’s don’t do it anymore ?? 🤷🏽‍♀️ I’m confused

@Ralowi I think it's hard not to feel negative at times. I was very positive when I went to dr s as I had a success with him previously, But now 6 months down the line I'm thinking like what the hell 😂. How can this not be working? How!
And I'm not feeling positive at all. The money I had saved for this is all gone and I'm not even pregnant. All these reasons is why I'm taking a month break to decide what we going to do next.

@MrsMargot so sorry to hear of your news... thinking of u and sending loads of hugs xx

@VenusStarr oh gosh sorry to hear that you still having issues with your lining. Did progynova not work?
I've stopped all medications this month. It's just so stressful the whole process.I hope it all works out for you at your next visit xx

@Sezmarelda1 awww congratulations. Hope all goes well x

@Sophi81 I don’t actually see Dr S. Couldn’t get an appointment for immune testing, not within a reasonable timeframe anyway, so decided to stick with IVF clinic for all treatment.

Did your GP explain why you don’t qualify? That experience sounds awful 😢 do perhaps the next best step would be for you to chat with a few IVF clinics? This would give you an idea of the potential timescales and costs. But maybe get a second opinion on the NHS route.

I know what you mean about the lack of understanding from family. I found a lot of support through SiMBA and Sands after my first miscarriage and met a few women, two of which are now close friends. I believe The Miscarriage Association are really helpful too. Would you consider checking out one of them so you can meet women who have had similar experiences? 💛

Sorry @Sophi81 just see you’ve mentioned you had previous success with Dr S so I can understand why you won’t qualify for IVF on NHS. Still, GP treatment of you sounds awful 😢

@MyEasterEggs this was before I had a baby they said I don't fall in the postcode lottery for nhs ivf because I'm too old when I was 35. Then 5 miscarriages later I went to see dr s and had a successful but high risk very stressful pregnancy. And then since then I can't even get pregnant again🤷🏽‍♀️
I spoke to my GP today to get all the fertility bloods done except the AMH so they have arranged that for next week but I'm a bit confused because wouldn't CRP have done all that anyway?? The have told me my options are to do superovulation again but with gonal injections or IVF. I do not understand how changing the plan to add gonal injections is going to get me pregnant 🤷🏽‍♀️

@Sophi81 too old at 35?! Crikey. Hoping that has changed as I thought most NHS trusts stopped at 40. Glad your GP has now helped to get fertility bloods done. CRP might have done it all but presumably you would have paid? I rely on my GP for the odd blood test, thyroid etc, and they’ve been good as prescribing stuff, which is a relief, as these tests and meds really do add up.

I had Gonal during my egg collection cycle as it stimulates the ovaries to produce more than one egg. But I think it also helps with low levels of LH and FSH. If you’re unsure of why you’re on meds do ask as if you decide to go with an IVF clinic you may need to share your case history 💛

@MyEasterEggs I've never heard of Simba or sands? Is it a website? That's amazing if you have made friends
from there 😃. I don't really have any friends or family who are supportive so would be nice to meet new people who are understanding.

Yes they said I was too old at 35 to be considered but they can refer me to a clinic and I will have to pay privately. Then just before they referred me I got pregnant naturally so they threw me off the books 😂. That pregnancy ended in 2nd trimester loss which was a very traumatic time for me. Then I just kept having miscarriages after that ☹️. So now that I do finally have a child nhs probably won't refer me and plus I'm over 40 now too 🙄. I just feel like I missed out every time and it's too late for me.

I did pay for a lot of tests when I went to CRP but they have told me to go to my GP for AMH and a few others but GP don't do it 🤷🏽‍♀️. The GP will only be doing basic fertility tests so let's see.

Oh how was your experience with Gonal? Dr Edge suggested that for my next step with Letrozole as they upped my Letrozole to 10mg for the last 2 cycles and I still only had 1 follicle whereas my previous 4 cycles I had about 4-5 follicles so don't know why that happened.

I'm just feeling fed up with it all now. Can't believe how hard it is to get pregnant 😩. GP didn't really sound too bothered by it

My local EPU were fantastic this morning, they managed to organise a prescription to treat my low potassium and I have to get my level re-checked on Monday as they don't want it falling any lower. Last time pred caused my potassium levels to fall I was having to take a huge dose of potassium (three times what the EPU have prescribed) so definitely needs keeping a close eye on!

@Sezmarelda1 glad to know the EPU are looking after you. Our local unit were always great with us. How far on are you now?

@Sophi81 we’ve had a very similar experience. Check out:

www.simbacharity.org.uk
sands.org.uk

SiMBA were the first charity I was put in touch with after my first loss, which was in the second trimester. We were given one of their memory boxes before leaving the hospital and we’ve been to a few butterfly releases. Then I contacted Sands after my third miscarriage as they were running a local group for those TTC after loss. I don’t engage with either charity much now - for no reasons other than I’ve made some strong connections nd no longer feel the need - but in the first few years of coping with recurrent miscarriage and secondary infertility they were a lifeline.

You can have AMH and similar tests through Medichecks. I’ve done quite a few finger prick blood tests when it wasn’t something a GP could do, I needed it done quickly or it was cheaper.

I responded well to the Gonal. My AMH is average and my follicles grew fairly well in line with that. Were you on other drugs besides Letrozole?

@Sophi81 Thank you very much… much appreciated ❤️

By the way, I have somewhat similar history with GP and referrals. My practice was awful at the time of my first 3 consecutive miscarriages. I was 36. The management of the practice changed and the current GP is much more flexible. She said that I can be referred to a miscarriage clinic for further testing even though I do have a child (in between ms). I do not know if it is worth it but they do have a bit more leeway with testing. I hope you find a way because the costs do add up.. it is definitely an additional cause for stress for me.

@Sophi81 I've still been sleeping pretty bad, no doubt it's just my anxiety now but I'm sure it was triggered by that cq10! I know we should be doing everything we can, but it's so much medication and vitamins. I've basically come off everything except the pre natal one. After we had made our minds up to give it a shot and booked in for ovulation intralipids (plus a hotel stay and trip to Legoland to make the ridiculous journey worthwhile), I'm still not 100% I want to do this. I'm generally quite indecisive and doesn't help my husband just stays neutral and says on the one hand he would love a second child but on the other he's perfectly happy with one and doesn't want to see me go through it all again. It's a good idea to take a break, even though it's another small setback it just takes it's toll and I just tell myself the chances of it happening that month would have been slim anyway! I know what you mean, did you used to get pregnant easily before going on treatment or not? Try not to worry about the money side, that's the one thing I've said I won't stress over but I know that depends on your situation. I've basically said to myself at least if it doesn't work out I'll look back and say I did try. We are lucky to be able to afford it but it does still feel like a waste sometimes. I don't know why they told you to go to gp for amh, they did that for me at the clinic (it was quite low at 8.4). The only tests they asked me to do via gp were the fsh, lh ans oestrodial (all extremely low!), so i have to have those repeated this cycle but I have booked in with gp anyway as it's really worrying me and plus I want to ask them if I can get any of the meds/vitamins (anything!!) on prescription just in case I am over paying x

Morning ladies,

Anyone else had issues with the way things are at the clinic these days or is it just me?
I don't want to put anyone off as I'm still being treated there but I've had to put in a complaint 😬
Seeing Dr Edge today which will be very awkward as Dr S is galavanting around the world again lol
Been anxious all morning about this appt and it's not how I want to feel when ttc just hope Dr S comes back to clinic to start seeing patients again!

@HoldingOn2Hope what did you have to put a complaint in about? I haven't seen Dr S for a long time but I've been seeing Dr Edge. I'm currently 8 weeks pregnant and the clinic have been amazing with me (especially Sophie) xx

Sorry to hear you're having difficult time @HoldingOn2Hope I've found the clinic to be really responsive and supportive of me, particularly at the moment. I hope today's appointment goes well and it isn't difficult for you.

How are you @MrsMargot ❤️

I'm sorry you're feeling fed up @Sophi81 it's really hard when things that have previously gone ok start to not work as well.

@Amy00 hope you're doing ok as you can be. When did you say your next scan is?

@VenusStarr thank you lovely, appt went well and I had Geri in the appt with me.
Dr Edge was really apologetic for all the cock ups and I was ok once we had a good chat.
I guess we are so used to seeing Dr S and these last few months they have messed up my prescriptions, Med doses...it was getting beyond a joke.
She accepted that it wasn't good enough and I suppose they are human and can make mistakes. I took a deep breath and we decided to put it behind and start again.
I've got to say though the nurses are a lot more responsive now...Sophie and Michiela seem to be on it.
I do have confidence in Dr S and the clinic so let's see what happens 😬
@VenusStarr how are you getting on? Xx

@Sophi81 it's so hard when you feeling like you are throwing everything at it but not getting pregnant to test it out! Having a month off sounds like a good idea. I also feel like if you did fall pregnant then it would be fine to take the drugs from positive test if that's the situation you find yourself in. I suppose it might reduce chances of a chemical if you start the drugs earlier but who knows really. There are no clinical trials for what we are doing. If I were you I'd cling onto the fact that it worked for you before so can work again! Adding the gonal injections I think should make more than one egg ovulate in the month so would double /triple your chances - same as super ovulation but maybe stronger? I'm not super sure though as I've only had the gonal-f injections during IVF - I was on a dose of 150 for 10 days and got 5 eggs. Hopefully the clinic can answer any questions you have?

For AMH I got the test done quickly at my local IVF clinic, before we started any treatment there. Results took about 3 days, I can't remember how much it cost though but wasn't too bad as is a fairly basic blood test they do all the time.

However my AMH didn't match up to my response to the IVF drugs, I have a relatively good AMH, as I'm "only" 33, and to only get 5 eggs out of a cycle was disappointing. Hoping they can tweak the drugs next time to get more, but just so you know AMH levels aren't the be all and end all.

@HoldingOn2Hope I'm sorry you've had issues with your meds. That's stress you really don't need on top of everything else. The clinic have been fine with me other than a bit useless with my current situation of almost certain miscarriage but not sure what I was expecting. I'm a bit peeved about the change to Dr Edge as when I last checked she wasn't on the website, no idea of her background/experience, we are paying all this money to see DrS and no one can get an appointment with him anymore. Just hoping he has done enough of a handover and making himself available if she has questions. Sophie and Michiela are both good (other than the trauma to my arm the most recent intralipid visit where there was a bit of a bloodbath 🤢!!!)

@VenusStarr my next scan is on Thursday. We've tentatively booked to go to Turkey in September, to have something to look forward to. But I don't want to still be bleeding which would mean no swimming. So we won't book the flights until we know for sure what's going on, resort is booked (refundable!) and looks amazing so I'm actually excited for it. Just need this situation to be resolved first. How are you doing?

@MrsMargot how are you doing today?

I'm really pleased to hear that @HoldingOn2Hope 🥰 are you doing another superovulation cycle? Glad to hear things went well today.

I'm ok. Got a lining scan tomorrow. Not feeling hopeful that the patches will have made a difference, but we'll see.

@Amy00 getting away sounds fab and good to have something to focus on. Eve got a uk break coming up at the end of September, with a hot tub that id secretly hoped I couldnt use! I'll be thinking of you on Thursday 💕
I'm ok thank you. Just trying to keep realistic, I want to think my lining will be better after these patches, but preparing myself for another cancelled cycle. If it is cancelled, we're taking an ivf / ttc break I think. X

I've had a tiny bit of spotting today at 7+3 😟I know if I call it in to the EPU they will just have me monitor things for a day or two as the spotting was very light, and I have a scan booked for next Monday already, so I think I will just keep an eye on it and re-assess tomorrow, but I'm not feeling very optimistic right now 😟

Hi ladies, I can’t remember if I’ve posted this question on here before but do miscarriage clinics (such as Dr shehata’s) have any opinion on Pgt-a testing? I have my first appointment with dr Shehata in 5 weeks and have just done a fresh ivf cycle and had a mc with surgical management at 8.5 weeks but measuring only 6weeks.

I’m 41 (42 in 3 months)!

@Sezmarelda1 I’m sorry for the spotting… I’ve had both…a mc with spotting and a mmc with no spotting…
How much progesterone are you taking? Is it the pessaries only?
Ive heard of several people who spotted throughout their pregnancies so I hope it all goes well for you!

@Sezmarelda1 so sorry, I don't want to give to you false hope either but obviously it could be normal spotting. Have you had any pains or cramps? Fingers crossed for your scan x

Thank you @birdbybird , I've had the same as you - miscarriages with and without spotting. To be fair I also had some at this stage in my successful pregnancy so it could still go either way. I'm on 400mg progesterone pessaries twice a day.

@Sezmarelda1 I hope the spotting eases off.
@birdbybird sorry to hear your news

Does anyone know how long it takes to see Dr Quenby if going private? Just wasted a week trying to get an appointment with a general immunologist and it appears they only deal with allergies! I’m just trying to find somewhere to test for autoimmune conditions rather than specific reproductive immune issues to see if I can be diagnosed with an autoimmune disease or not. I can’t proceed with any transfers until I can find someone to do this.