Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

Thank you all 🥰🥰🥰

Congratulations @Daffodil21 🥰🥰🥰

@Daffodil21 @wireless77 massive congratulations!!! This is fantastic news

@VenusStarr I'm glad the biopsy is over and your results are back ASAP so you can move onto the next stage of your treatment

@Lozfish I'm on 10mg, its enough for me to take the edge off the anxiety which in turn helps my mood. I'm glad its helping you too. I feel less neurotic lol!

@treesall thank you, that means a lot. How long until your next scan?

@Luckyducky2 I'm so glad you've been able to book a holiday. An injection of sunshine sounds like a great idea after all you are going through. Thinking of you

I hope everyone else is ok

Xxx

Hi ladies,
I'm new to mumsnet and would love to join the thread.
I've had three miscarriages over the past year and a half.
First one diagnosed at 12 week scan, but stopped growing at around 8/9 weeks after heartbeat was detected in week 7. Second at 5 weeks and third at 7 weeks.
I'm with an Infertility clinic and have just been referred to a RMC clinic as well. So I have started the investigation marathon. But I'm so determined to find out what's going on.
Also thinking about seeing Dr G in London, but wanted to do a few other tests first (APS, Thrombophilia etc). Anyone else seeing him at the moment?

Well, I'm happy I found this thread!

@Daffodil21 Congratulations to your little one!

Another newbie joining this thread, I found this while searching for Dr Shehata.

Hello everyone, I wish I did this before. As I’ve been someone who stays up at night sometimes reading threads on infertility.

Please forgive me as I don’t understand all the abbreviations people use on here so please forgive me for not been able to use many in this essay I continue to write lol I feel a little lost and I know I need to actually interact with you lovely people on here as no one else seems to understand the struggle of what we are going through. I’m sorry for all your losses and struggles also congratulations on all the positive news too. I hope there is some good news for everyone on this journey. Here is a little about me I’m 30 years old (nearly 31 in a few weeks) TTC for 3 years now. I’ve had 1 missed Mc and 4 chemical between 2015-2018 and no positive since. NHS diagnosed me with lupus anticoagulant which fluctuates with negative & positive results. I’m now privately registered with Dr Shehata in Epsom since March 2021 and I’ve had all sorts of tests, Hyfosy (all clear), internals (good lining of uterus) blood tests. (Cleared of LA too) But I’m on a complex treatment plan after he found some Bi-Lateral PCOS (which have now disappeared) after 3 months on his complex plan with HCQ, intralipid, baby asprin, metformin usual folic,inofolic and vitamins. I also have high NK cells. Which is why I’m on the immune therapy like a few of you.So with all the drugs, drips and tests each month, you could imagine I’m just finding it all so frustrating, I feel alone and upset that nothing is working. How are you all finding it? I’m clearly not alone based on this thread. Where is everyone at and how long have you been with DR Shehata? I’m decided to also do the super ovulation treatment. I’m now past two cycles of Letrozole, ovitrelle & cyclogest. It’s not worked after finding 2 follicles last month sized 18-22 and I was triggered and given 36 hours for timed BD. I hope I can find some support and also help others in a similar situation. (Sorry for typos)

@CairoDream, I was under Mr Shehata's care for about 2 years until my successful pregnancy happened. Similar treatment plan to yours (autoimmune illness, PCOS, high NK cells + I'm not the youngest and overweight). I miscarried 3 times under Mr Shehata's care, one was a chemical (only 2 months after the start of treatment which may have not yet fully worked at that point), two were around 9 weeks (major hematoma with one which may or may have not been the cause, the latest miscarriage was chromosomally abnormal and the baby never had a chance). Mr Shehata encouraged us to keep going and advised against IVF as we would have probably miscarried anyway. We took his advice, pushed forward and had our rainbow at the end. 6 months of treatment isn't too long at all, give it a bit more time if you can. Superovulation worked for us very well, though not with Letrozole only. We needed to add Gonal F injections and it took a couple of months to get the dosage right, it worked. Best of luck!!

Hi @CairoDream I'm glad you found our little corner, it can feel really lonely going through this ❤️ I've been with Dr S since last November (after my 4th loss). I'm on the complex plan with prednisolone but we struggle to conceive (started ttc in 2017) and my amh is low. We had an nhs ivf round in May and I did conceive but had a chemical - Dr S thinks something else is going on, so I had the Endometrio tests to look at my receptivity for ivf implantation and infections and inflammation - so just waiting for my results. I live in the Midlands, so it's a full day out to see him. I'm sorry superovulation hasn't worked so far - I did one cycle in March, I know it has worked for others 🙏 it hard to keep going x

Hi @Annabell1 welcome, I'm sorry for your losses ❤️ I've not seen Dr Gorgy but I've heard he's good.

Thank you @Rainbowdreams1983 I'm already impatiently crossing off the calendar waiting for my results. I'm not sure when to expect af either, I'm away for a couple of nights next week and it'll be typical she'll arrive then! Hope you're doing OK?

@Badlydrawngirly hope you're well

Lots of love to all xx

@Wireless77 Thank you for your response, it is really good to hear your amazing good news. I wonder how you managed to mentally stick it out for 2 years on top of TTC from before, as I am panicking with the last two months on this superovulation programme. Patience is key I guess. Sorry to hear about your losses too. DR S... He is such a character, isn't he? I found him funny when I met him as I nervously laugh at people who kind of try to tell you "I know it all". But I'm happy to be under his care just hope he doesn't just want to keep me going for six months for the sake of it, I feel like lots of us are kept on certain plans hoping for the best and he only changes things up when you act concerned or its been too long. I'm worried I may fall into unexplained infertility and I wish to do IVF like now, but everyone seems to advise me to keep pushing this way first. I'm currently waiting for AF to arrive as I tested negative recently. (sad times) But I would like to be kept updated on how you are also getting on.

@VenusStarr hello, this corner is the best thing about going through this, at least you can vent, advise and empathise with people. Real-world, friends and family just really do not get it. Oh, so you have also had similar losses and plan just with pred and not HQC? Sorry to hear it's going this way for you. I wish you all the best with your results. I used to live in the Midlands too but now I live in Yorkshire so completely get the whole day thing. Luckily I have my own business, so having time off isn't an issue. I could imagine that may be difficult for some people. Fingers crossed xx

@VenusStarr Thank you so much. I plan to go and see him next month. Its such a difficult journey to be on and I wish we wouldn't have to go through all of this. Sorry for your losses and crossing my fingers for you. ❤️

I've just received the latest blood results from my GP showing elevated TG and TG antibodies (Thyroid). The GP was really concerned, but when I asked her what to do she said that there is nothing I can do and that I should discuss it with the RCM clinic.
Does anyone have experience with autoimmune thyroditis or hashimotos? I'm already on Levothyroxine, but my endo doesn't think my thyroid is the problem.

Congratulations @Daffodil21 and @Wireless77 thanks for sharing your stories, it is so nice to hear some happy stories to keep us feeling more positive.
I've got Hysteroscopy and treatment of scarring (if required) on Friday. Feeling anxious, not happy to be having third surgical procedure in 9 months but feel I don't have a choice.
Also got spwrm DNA fragmentation back this week and it's very high so it's hard not to feel down as this also could have caused the miscarriages. It's so high we don't know how reversable it is, will see what the consultant says next week. Long road ahead I think. 😥

@Annabell1 @CairoDream welcome to the thread. Sorry that you find yourselves here.

@89Hope best of luck tomorrow. I hope the procedure isn't too awful.

I'm filled with panic today. I've woken up feeling absolutely fine, no sore boobs, no nausea, and I feel pretty normal. I was awake half the night poking my boobs hoping they might magically feel tender again. I know symptoms can come and go but I feel really worried about it, my gut feeling is bad. Wahhhhhhhhhhh!!

@treesall Thanks for the warm welcome.
I know exactly how you feel. Try to find something that helps you stay calm.
I told myself things like 'today I'm still pregnant' or that any negative thoughts would only make things worse, so I tried to cut them out. Maybe some stretching or music helps? All the best and hugs 💕

Thinking of you tomorrow @89Hope hopefully it's a turning point. I'm sorry about your dh's sperm dna fragmentation result, I'm glad you've got an appointment to discuss. I hope you're OK ❤️

@CairoDream I'm on hydroxychloroquine too - he initially just put me on that and intralipids but at my 3 month review he added in prednisolone as my activation level is very high.

@Annabell1 I'm sorry your bloods have shown something, has your GP suggested changing your meds? It's hard when different professionals have opposing opinions. I'm on a low dose of levothyroxine but don't have hashimotos. I hope you can get some clarity.

My period arrived late last night, which surprised me but I'm glad to be off the hormones for a while. X

Cross posted @treesall ❤️ it's so hard. When is your next scan? I'm sorry you're worried xx

Thanks @Annabell1. Most of the time I'm doing quite well (I think!) at staying calm but the further along I get the more hope I have, and the more panicked I feel!

@VenusStarr thank you. My scan is Tuesday. Eeeek.

I need to book the Harmony test but I am not going to do it through CRP because it's a lot better value at the place I had it with my first pregnancy, and they do 2 scans (including a detailed 12w scan) as well for the same price as crp charge just for the rest. Problem is I need to book now and I just can't bring myself to do it because it feels too early and like i am going to jinx everything. Argh I need to get out of my own head - I'm a mess today!

Hi ladies,
I hope you don’t mind another newbie joining in - I have lurked on the thread for a while.
Background info,
Started TTC October 2020, got pregnant second cycle, MMC (blighted ovum) had one cycle and tried again thinking it was bad luck, exact same thing happened again, blighted ovum.
Decided to go private for testing and chose Dr Amanda Tozer, I had some basic bloods done and turns out my TSH was slightly high and I have thyroid antibodies, so I’m on thyroxine and my TSH is now 1.99 which she is happy with and I have progesterone and prednisone (20mg) to take from a positive test, we have taken three months off to recover and been taking supplements to try and help egg quality and imrpyl for my partner, we said we would try again this month and I’m just terrified, so scared we haven’t done enough! So here for the support really. Thanks for having me

Hello ladies,

I've spent the past few days in turmoil thinking everything had gone wrong, but I have just had a 12 week scan with the professor at CRP and thankfully at this point all seems to be okay. I am measuring 13 + 4.

I've had few symptoms and actually felt quite energetic at times, I hope this might be reassuring for anyone who has the same anxieties.

Just having intralipids and letting it sink in.

Love to all xxxxxxxx

@ginandoreos this is FAB news!! I'm so pleased for you. I hope getting that 'good news' 12 week scan helps you to relax a teeny bit.

Welcome @Kelspj :-)

Thank you so much @treesall ❤️. Now to reach the next milestone 🤞🏼.

Hello to everyone, especially those new to the thread. Sending love to everyone who is going through and has been through these tough times. Xxx

Congratulations @ginandoreos that's brilliant news! What a milestone to have reached, it gives us all hope.

@treesall I hope you're ok. Sounds like your indicators at your last scan were really good so I'm hoping this is just because you're coming to the end of the first trimester now and symptoms can drop off a bit.

Welcome @Annabell1 @CairoDream and @Kelspj (sorry if I've missed anyone)

I'm now in my first tww after trying again and I have to say, I'm so scared of pregnancy that I'm actually not at all stressed about it - first time since we started trying that I feel I could take or leave it. Kind of good but I know it's because im so convinced it's never going to work out for me and I want to delay the pain again. This is a tough old journey, sending love to all you very strong women x

Oh @Lozfish, those feelings are so understandable. I've definitely felt the same during the past couple of years. Just keep trying to be kind to yourself and give yourself grace ❤️. And hold on to hope, if you can xxx

I wondered if anyone has read about this trial:
www.tommys.org/our-research/our-research-projects/miscarriage-research/cerm-can-doxycycline-prevent-miscarriage

After reading a couple of posts in a Facebook group, I obtained doxycycline myself from Superdrug (they will prescribe it for chlamydia.....) and I took it the month before I conceived.

I just thought I'd share this and it may or may not be useful or at least interesting for some xxxxx

@VenusStarr The GP just mentioned that I should continue the Levothyroxine as a TSH at around 1 is better for fertility. She didn't give any advice in regards to the antibodies. But after reading Dr. Beers book I think that Levothyroxine alone wont do the trick.
@treesall I'm also crossing my fingers for your next scan.
@Lozfish Thanks for the warm welcome. 😊
@ginandoreos Such good news. Really good to hear your success story. ❤️

Sending a big hug to everyone
XX

Great news @ginandoreos I know someone who had 7 miscarriages and her GP prescribed doxycycline after reading about the cerm trial and she's about 15 weeks now. The tests I've just had look for chronic endomitritis, so I'm really interested in seeing what comes back. I did see Professor Quenby and she said I could go on the trial but it felt too risky to possibly know I have something but then get a placebo.
I'm glad it seems to have worked for you. I'm so pleased you had good news at your scan ❤️

It is a difficult journey @Lozfish ❤️

Welcome @Kelspj I've heard good things about Amanda Tozer, one of my friends has recently seen her and she's been really supportive.

Feel like I'm in a weird limbo phase at the moment. My birthday is in a couple of weeks and it's the first one in 2 years that I'm not pregnant and it made me sad. X

@VenusStarr wow, that's amazing about your friend ❤️. The info suggests half of women who experience recurrent miscarriage have endemetritis - surely that's quite significant..! I hope the trial can provide some answers - and some positive outcomes. I hope your tests give you some answers and some steps forward.

I've also heard really positive feedback about Amanda Tozer and how supportive she is.

I hope you can do something really special on your birthday to make it a lovely day as you absolutely deserve it ❤️. It's so hard though, when particular dates come and go, that have meaning attached.

Thank you all for your kind words, yesterday was a really positive day for us. I'm still not ready to let myself be excited or too confident.... 'just in case'... strange feeling this way. And not ready to tell anyone else, though it was lovely to tell our parents. Xxx

I think I am also going to give the doxycycline a go! I was going to start TTC again this month but I think I will feel more comfortable trying this first and then starting up again next month..

Yes Amanda is lovely and not pushy at all xx