Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

Hi @Sunshineblonde1 Mr S normally gives Hydroxychloroquine if the steroids failed. In my case he put me straight on it, but it didn’t work out as I had a miscarriage in September, now he added steroids.

@DaniMERL Hope you are ok? At least with HCQ there is no side effects I’ve been on it for 6 months now, but you have to take it for at least 6 weeks before you can TTC or Mr S might say to try again on steroids. Let us know how it goes. How does the super ovulation works? X

Hi all, I was on this thread some time. I just thought I’d add in my story as I remember reading so many old posts before I saw Mr S and I’d wondered for those who hadn’t succeeded - what had happened.

I am sorry to hear of the recent losses on here- no words I know can make it any better, but I send you hugs.

I am pleased some of the ladies I was on here with have gone on to have successes which is lovely (Harriet, justla and so pleased you’re pregnant now poppy too!).

I have one DS who has just turned 5, no issues conceiving him. In total had 6 miscarriages (missed miscarriages and chemicals). Found to have raised nk cells by Mr S and started the protocol, but worried about whether I was ovulating. Mr S looked into this and found I had a low ovarian reserve and a low AMP. I then did super ovulation for 6 months, with no success. I then moved on to ivf and opted to go to Greece - we had the option to try own egg, however I had very little faith in my own eggs, so we went for donor and I am now 28 weeks pregnant. For the ivf I was on steroids- my first round I had a chemical and I was only on a low dose, so the second FET the clinic agreed to increase the dose and I am convinced that this combined with the donor egg, is the reason this one stuck.

I just wanted to share my story. Mr S helped get to the bottom of things and identified the nk cells, so the time I spent there was definitely worth while. My first missed miscarriage was at 34 after my son, poor ovarian reserve identified when I was 36. Nhs didn’t want to look into any of this as they assumed I was too young and have none of the risk factors. In hindsight I wish I had looked into my ovarian reserve a lot earlier on, rather than burying my head in the sand about that possibility ( I had a riser fsh at 34- which doctors just said was ok).

For us, donor eggs have not been an issue as we were just desperate to extend our family and we are open about using donor eggs with friends and family. This baby will grow up knowing about the wonderful lady who gave us some of her eggs so that we could have him.

I hope this gives some of you faith who may read this in the future and are not sure what to try next. I know our baby is not here yet and I have everything crossed that the remainder of the pregnancy will go smoothly. I would also really recommend looking at clinics abroad if you do need to go down this route- the care is second to none and all of us having gone through so many losses are so brave already.

Good luck ladies and heaps of baby dust! I hope 2019 brings lots of luck Xx

@Starshinr1 Congratulations, I love hearing positive stories. Good luck with the rest of your pregnancy and thank you for sharing your story.
Which clinic did you use in Greece? Xx

Thanks Megan, it’s a tough road for us all. Serum in Greece x

Hi all,
Thanks so much for kind words. I’m trying to stay positive but it’s quite difficult at the moment.
@sunshineblonde1 we did the SpermComet tests. I am not really sure what to make of it. They test a lot more than standard NHS testing but the report was confusing. It had scores and the summary literally said “increased risk of miscarriage” but the accompanying email from the clinic said it was fine. We naturally questioned this as we were alarmed and it was a bit unexpected and Mr S said it was just one of the scores that was v close to normal but not quite which resulted in this summary and it was really nothing to worry about. What I never got to the bottom of was what happens if the report comes back bad - I thought he just said he would recommend various supplements, in which case perhaps there’s no harm in just taking these anyway. Unless the report is really bad and they then just advise a sperm donor perhaps? Is worth exploring further, I’m not sure I know the answer!

@Megan234 the superO is where you take Letrozole to increase number of mature eggs and then there’s a trigger shot to release them, the idea being that there’s a higher chance of an egg being fertilised because there’s more than 1. They have to scan you to check so there’s more cost involved.

Why were you on the Hydroxy to start with? Sorry you have probably already said!

@starshine1 thanks for the update! I really still worry a lot about egg quality. I can’t bear the thought of all of this still failing because of if. What you have been through sounds horrifically expensive too! I am not sure how much more money we can throw at this. I also have a 5 yr old DD conceived with no issues.

@zarala what news???

Was the dna fragmentation higher Danimerl?

I think that’s often what is tested for in the more advanced tests. If so the clinic in Greece have a protocol of to improve quality which is following a healthy diet, no smoking, alcohol or caffeine and high doses of antioxidants plus doxycycline to improve the quality. My DH DNA fragmentation was slightly higher and this worked for him.

You can do an AMH test through medichecks yourself for £50 and at least then you know if egg quality actually is an issue or not. I wish I had done this sooner.

Yes we have spent a lot, but actually way less than we would have in the uk so don’t rule out anything. Although fingers crossed super ovulation works for you as it has for others

@starshine1 Is the AMH test the same what Mr S does? Sorry about all the questions.

@daniMERL Mr S put me on Hydroxy because of my late miscarriage.

Thanks @DaniMERL - we got the SpermComet results and it said 'increased risk of miscarriage' I dont really understand the test and what the comet scores actually mean!! I am not sure whether anyone else on here knows? @starshine1 what does the sperm fragmentation mean? Is that the same as Sperm Comet?

Dr S didn't seem overly concerned but did suggest that the anti-oxidants would help improve the score as well as doing a urine analysis for any underlying infections. So OH is now on the anti-oxidants (Condensyl). I asked Dr S if it was ok for us to go ahead with TTC as normally they say to wait 6 weeks for the anti-oxidants to kick in. But I said I wasn't keen on waiting so he advised just to make sure OH ejaculates the day before I am due to ovulate and that way we would have the best swimmers.Just an FYI for anyone that is advised to use the Condensyl - Dr S told me I could only by them from his clinic, but we went direct to the manufacturer online and it was much cheaper....

Hi @starsinw1 thank you so much for posting your story. and huge congratulations on your pregnancy, that's an amazing outcome. It really has provided food for thought and hit home that the path to conception is not fixed and there are many roads that can be taken to reach the end goal. It just shows, where there is a will, there is a way :)

In your post above what does AMP mean? How long did it take for your DH Sperm DNA to improve?

@Megan234 Dr S does the AMH test yes, alongside FSH, Prolactin and hormone profile. Everything came back normal on mine apart from a low AMH for my age (37). He said I had the AMH of a 40 yo but wasnt concerned, just said it meant we needed to crack on with TTC.

There is a lot of scare mongering about AMH levels out there. AMH really only shows ovarian reserve rather then egg quality I thought? After hitting 35 other factors come into play like increased risk of chromosomal abnormality as well as increased miscarriage risk in general which paired with a low AMH can make things more tricky, but I don't think it is the AMH itself that is the problem, I think it's a combination of factors. AMH is just a marker.
I think it is good to know your AMH but not to get too hung up on it. Also diet, low stress, accupuncture, Omega 3 supplements can all help with egg quality. I have fairly low AMH for my age, my number is 3.2 and I am 37. If it turns out my eggs are troublesome then it's good to know there are other options and I am grateful for your post as it gives me hope!

@starshine1 see post above this, sorry I miss-typed your name! x

@starshine1 We had the AMH test with Mr S. It was 7.1. I am 37. He said it wasn't great but nothing to worry about yet. However, I still worry that egg quality is the cause of all our problems.

Sorry ladies I meant AMH. Yes and completely agree sunshine that AMH is only a guidance. I had the other hormones checked on the nhs and paid for AMH through medicheks as it was cheaper I think. I think I’d just say it’s useful to know this along with your atrial follical count. My AMH was 0.2 at 36 so much lower ladies and very low attrial follicle count too.

I haven’t heard of sperm comet I am afraid. There’s quite a bit about dna fragmentation online, but again it’s a bit controversial. In the uk I think it costs 100s to test, but it was done as standard with the sperm test my DH did abroad and the whole test only cost £100 I think for everything.

Yes just wanted to share that there are other routes. Hopefully not needed, but I think I’d have found it helpful to hear something like this when super ovulation wasn’t working for us as those people disappear off the threads and I always wondered what happened (of course I completely understand why they may have not re-posted).

We were desperate to crack so DH retested sperm after 40 days and it had improved, however ideally the clinic recommends a wait if 3 months.

Good luck ladies to everyone xx

@starshine1 absolutely! So glad you have posted. I always wonder about the people who it doesn’t work for as they do disappear. It means you don’t get a full picture at all and that’s very difficult when you are trying to decide what route to take.

So when you started with Mr S did he do the AMH test if so, did he not say it was very low then? Just wondering if you feel you shouldn’t have wasted time and money on that programme and 6 months of SuperO?

Thank you again xx

No he looked at my follicle count as if had an appointment at the recurrent miscarriage clinic who said I was about to ovulate- however I was temping and seeing an acupuncturist regularly and was sure I’d already ovulated. Mr S felt like me, this didn’t add up, so looked at my follicle count- I did the AMH off my own back and this combined with the follicle count led us quicklyninto super ovulation. Before this no one thought there was an issue as we didn’t really have an issue falling pregnant, just keeping them, so they assumed my eggs and DH sperm were ok.

I responded ok to superovulation so did do this for the full 6 months (think I needed that time so come to terms with poor ovarian reserve diagnosis as well), but it didn’t work and towards the end we were already planning our next step abroad.

If I had to go through it again, I wish we’d done sperm analysis and looked at eggs earlier, so gone straight into super ovulation. I’d always have tried this I think.

Frustrating as if I’d only been under the recurrent miscarriage clinic- I’d have spent another year trying without knowing there was an issue.

I would def give super ovulation who and see how you respond

Hello everyone I've had a break for a few days (and the rest). @DaniMERL how are you feeling?

@starshine1 thank you so much for posting. I'm ambivalent about Mr S' treatment programme. The last two months when I tried it I had cycles of 22 and 24 days so I'm taking a month off to see whether it messed with my cycle or whether I am perimenopausal (I'm 43 so very possible). So I asked the gp to have my FSH tested this cycle (on the back of 4 mcs last year she was quite dismissive and rude but agreed) and I got a result of 20.1, which is high so I am wondering about my eggs. Mr S said that he wanted to do the bloods again including AMH because he questioned whether they were accurate. But if they are then he suggested that my only option would be donor egg ivf because he thought my eggs wouldn't be any good. Always great to hear. He is so very direct. So I would be interested to hear how you felt about doing this. It's amazing that you got the result you wanted. I am tempted but my OH is less keen and then I started worrying about how I would explain it to my child if I were lucky enough for it to happen and whether it would cause any issues between one natural child and one child who genetically isn't mine. It sounds pathetic but i would be so grateful to hear about your thought process etc if you have time. Also how often did you have to go to Greece? For how long and whereabouts? Very interested in your story. Thanks very much.

I am actually losing my marbles - freaking out over my waning fertility and scrutinising every symptom in the ridiculous hope that I could still fall pg. Maybe I need to stop trying - don't really have the time to take a break from ttc so I wonder whether I should just draw a line. Bit all over the place at the moment.

Oh tax girl, I completely feel for you. Do you do any counselling/ relaxation? I saw an acupuncturist regularly who specialises in fertility and I always found the sessions a bit like a counselling session. They often have me a chance to take a step back. It’s down to her really that I considered donor eggs. One session she said-‘ really it comes down to whether you would like another child or not. If you look forward, can you see yourself being happy if you haven’t tried everything?’ Perhaps a bit of time out to reflect on things and work out want you both really want/ are prepared to try- without the pressure of - would be a good idea. I guess if You did donor, age isn’t a problem so you haven’t got that ticking clock.

I thought about this for donor eggs for a long time whilst doing the super ovulation. My DH is quite laid back and wanted another child but for him he was also happy with just the one. Of course I am too, but I’d never seen us with just one and my DS has always talked of having a sibling- I felt like a complete failure as I couldn’t do this.

When I first thought of donor eggs I didn’t think I could do it, but then I thought that we were thinking of adopting. I work once a week in an antenatal clinic and sometimes see mum’s having children who are drinking/taking drugs still and I kept thinking it’s so unfair that I would do everything to be healthy and yet couldn’t have another child.

So then I looked into donor more. If you look into epigenetics, 40% genes are supposed to come from egg and sperm and the remainder 20 % from the environment the egg is in (me 🙂).The clinic we used in Greece tries to match donors as closely as they can and are really so supportive. My DS is 5 and he knows that mummies eggs are broken and that a very kind lady gave me some of her eggs so that we could be lucky enough to have another child. We are going to be very open from the start and have no idea how the child will feel when he is older, but hopefully knowing he is completely loved and was so very much wanted and tried for will all help.

Also I often think lots of children look nothing like siblings/parents even when fully related.

You can have an initial appointment through Skype, completely free of charge or fly out. We did fly out and had a mini break in Athens. My DH has to go once more as he went on a sperm improvement protocol. Then I went twice more, once for a fresh transfer and once for a frozen transfer.

We used serum in Greece, but there are lots of good clinics, new life has a good reputation as well.

Sorry for the essay and I really don’t want to overtake this board. Don’t know if you can private message on here, but happy to talk more about any of this promaty if anyone wants some more info if it’ll help.

Please also remember I had higher fsh,low Amh and low follicle counts plus the higher nk cells. Lots are not in this position and MrS definitely does have some fantastic results x

@Starshine1 thank you so much for posting the above, it really is so useful to see that the road doesn't end after Mr S's protocol. I too have a niggling feeling that I have some dodgy eggs and they are causing my miscarriages. Like you I fell pregnant quite quickly normally, but they don't stick. So it is so reassuring to hear your thought process and experience with the Donor egg route. I have written the name of the clinics down just in case . At least now I don't feel like Dr S is the end of the road and if this doesn't work out after 6 months then there is a new path. Thank you to all the ladies posting here, it really does help me feel less alone in this situation.

I agree with what your saying above, and the premise that when things become overwhelming and stressful its time to take a step back from all the worry and focus on wellbeing - the Headspace meditation app can produce quick results for calming the mind when it becomes frantic and anxious and like you I find accupuncture a sanctuary!

There's lots of big and often scary decisions to be made in this journey at times like this we have to be brave and just make that step forward, sending hugs to all @Taxgirl1 @DaniMERL

x

@Sunshineblonde1 @Taxgirl1 @DaniMERL
There are ways of improving eggs quality like taking different supplements for example ubiqunol. I’ve been speaking to ladies who were going for IVF and were told that their eggs quality was poor and after taking ubiqunal and other supplements for 3 months their eggs improved. Do your own research but when I asked Mr S about it, he said that it won’t hurt taking it.

I’ve been quiet here for a while after my miscarriage in September as I had to come to terms with what happened especially that there was nothing wrong with the embryo, but I’m not giving up and TTC again.

I never had any problems getting pregnant but now after taking steroids for 2 months I’m not getting pregnant and I ovulated really early last month. I also decided to start taking steroids from BFP, I’m still taking Hydroxychloroquine everyday.

I know how hard this journey is for all of us but we have to keep going and hope for the best outcome possible, sending lots of baby dust to all of us X

Hello @Megan234 - thank you for sharing about the Ubiquonol. This sounds like it could be useful to me with my fairly low AMH. I don't suppose you or anyone knows what brand and how many milligrams is best? I have read Nature's Best is quite popular but have no experience with it personally. If there is something I can do to improve things then god damn I am willing to give it a good go
I am not taking the Pred until BFP either.

It is a mental battle going through all this - taking time out when you need to gain some sense of normality is a good thing to do to decompress and more importantly restock on that inner strength. It took me 3-4 months after my MMC in August to feel ready again. I am glad we can be here as support .

I decided that the mantra for 2019 is to imagine the best possible outcome and believe that that will happen - whatever route it takes to get there x

@Sunshineblond1 I’ve done some research about Ubiquinol and tried 2 different brands. Now I’m taking Nature’s Best 200 mg with no side effects at all. Make sure that you take it in the morning as it can effect your sleep but I had no problems and I normally stop it after ovulation because you not supposed to take it when you are pregnant. Any question please let me know.

I know how hard is to keep going but I’m determine for 2019 to be a better year 😊

Thanks @Megan234! I do have a question . I did a little bit of reading yesterday and gather it takes 3 months to make changes to egg quality. As I am TTC now do you think it will work if I only take it from BFN to ovulation and then have a break? I can't seem to find any info on how best to take it. The only thing I found was something about taking 200mg for two weeks then dropping down to 100mg as maintenance but I dont know whether that is specifically recommended for fertility or people who take it for other general purposes? Bit confused! Thanks for any info you have to share x

Hi @JoeyWally tagging you in here so you can ask your questions about Super0. I haven't had it myself but I know ladies on this thread have experience with it so hope you might get some answers to your questions if you paste your queries here . I know @Starshine1 may be able to help you with some answers.

@Sunshineblone1 It will take 3 months to make changes to the egg quality but I read somewhere that the most abnormalities happen in the last 2 weeks of the egg development, so I would start taking it as soon as you get BFN. I know you can take 300mg but I decided to take 200 mg and some ladies take it until BFP.
I hope this helps x

Thank you !

Thanks you @Megan234 will give that a go! x