Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@KittyKatSmile Thanks for letting me know. I’ll try and remember so I can watch. Would you mind me asking why you switched from Mr S please?

@Jellystar23 erm, I'd never much liked his style but then he basically told me it was my fault that I lost my 4th baby (just after he'd told me there was no heartbeat) and I decided then that I'd never put another penny in his pocket. But I also wanted to switch to IVF so I wanted to go somewhere that could both make me and keep me pregnant, rather than being under two places.

@KittyKatSmile oh my goodness, that’s awful! Well your decision paid off, so you were definitely the winner in the end.
I must say his confidence settles me (which I think is good for me) but I do get slightly frustrated at the lack of opportunity to make decisions about my care so I can definitely understand. Thanks for sharing 😊

@Rebecca9876 I’m so sorry for your loss. I can’t imagine how difficult it must be trying to grieve the loss of your baby whilst also carrying their twin and having the anxiety of wanting them to be OK.

I had another BFN today. I was speaking with my acupuncturist and I realised that I don’t have cervical mucus anymore. Sorry if TMI! Wondered if anyone else with Dr S has had the same and whether it is the meds we are prescribed, or whether I need to look into it as I’ve read it can affect getting pregnant?

@NICK7nick7 That's really odd! I can't advise as I'm only just starting on his treatment plan, but what drugs are you on? Sorry to hear about your BFN. I always find the first few days afterwards are the worst, so be kind to yourself.

Can I ask you ladies - has anyone read Alan Beer's book, Is Your Body Baby Friendly? I finally bought a copy the other day and made a really interesting discovery in it that I plan to talk to Dr S about when I see him. It says that if your TNF Alpha is raised it can affect egg quality. Given the total disaster with my embryos during IVF and subsequent chats with my IVF doctor, who said there may be an egg quality issue, I find this point very interesting. For the first time, I'm beginning to think my two problems actually might be linked. Dr S said my TNF alpha was the highest he'd seen for a while (it was 57, now down to 27 on Humira), so I find this significant. Just wondered whether others had read the book and found it helpful?

@Everhopeful35 thank you, yes I’m always really low on the day of it so have tried to take it easy today. I take hydroxychloroquine, aspirin, fish oil, prenatal and vitamin d and then Prednisolone and Progesterone from ovulation. I’ve only recently come off of antihistamines as my hayfever was so bad so it could be that as I’ve read that can be linked to low CM. Can’t believe I hadn’t noticed it before!

@NICK7nick7 I am sorry about your bfn. I'm due to test tomorrow so I'm holding my breath today.

@Everhopeful35 I read the book last year and it had a lot of impact. After reading it I realised I wasnt the only one who had terrible cramps around embryo implantation time on the cycles I was ttc. The pain wasnt there if I didnt try in a particular month. It has now completely disappeared after taking hydroxy. :)

@KittyKatSmile thank you for that might just tune in.
@Rebecca9876 I'm really sorry that you've lost one do the twins, will keep your other little bubba in my prayers 🙏🏽

I've decided to ditch the meds this month, I just want a break from it and a think about what I want to do rather then spend £500 on Gonal-f injections again this month. It's costing me almost 1k a month with the scan and meds so I've told the clinic I'm having a break :)
Will continue hydroxy until I know what I want to do.
@KtAgs I'm glad all is going well with you xx

I'm sorry for the bfn @NICK7nick7 I've heard evening primrose oil can help with cervical mucus - I take 1000mg up to ovulation. One cycle I did take 3000 and it pushed my ovulation back a couple of days but I had a ton of cm. You shouldn't rake it after ovulation though as it can cause uterine contracting. Might be worth a try? It's only £1 in asda for about 60 capsules.

I have got the book @Everhopeful35 but think I need to dig it out again before I get my results next week. That is very interesting though and potentially significant.

A break from meds sounds like a good idea @HoldingOn2Hope

@Lalaifa 🤞 for tomorrow

I ordered a new book yesterday called It will happen - the author had numerous miscarriages before seeing Dr S and having her immunes tested and got there in the end. Dh said to me I've got the crappiest book collection ever - literally they're all fertility or baby loss related 😂

@VenusStarr thank you, I’ll look into that.

@Lalaifa good luck for tomorrow, I really hope this month is your month.

@NICK7nick7 I reckon it's the antihistamines! I had a really bad cold one month when TTC and was taking a combination of antihistamines and Sudafed, and literally had no cm.

@Lalaifa Good luck for test day tomorrow! That's really interesting about the cramps. I haven't got to that part of the book yet. I have always had cramps when TTC and just put it down to progesterone and my imagination, as I'm always obsessively symptom spotting 🤣

@VenusStarr I've read It Will Happen! It's very comforting and definitely left me with more hope. The author has a podcast called The Worst Girl Gang Ever about recurrent loss, which is also worth a listen if you haven't already. Yes, hoping my TNF alpha discovery is significant. The thing the doctors can't seem to work out is why my egg quality is poor because my hormones (AMH etc) is good. Perhaps this is the thing they're missing.

@HoldingOn2Hope Sounds like a break could be a good thing. Are you on the superovulation plan? I'm new to this and wasn't sure whether gonal-f is the trigger injection? I'm literally having my first scan to check on follicles on Monday.

Hi everyone
I had my first appointment with Dr S today
We had a chat about my cycles and miscarriage for 15minutes and he said he suspected I had PCOS I said I had an ultrasound with the NHS in August 2020 to check for PCOS and they sis everything was normal he wanted to do his own scan today anyway
Guess what.....
scan showed obvious PCOS and adenomyosis which the NHS scan failed to pick up I've had 4 ultrasounds and 4 CT scans in the last 2 years and no one has ever picked this up.

He started me on metformin 1 tablet 3 times a day with each meal and isofolic 1 sachet twice daily on an empty stomach
I have to continue to take aspirin, omega 3, pregncare , high dose vit D and high dose folic acid = 1 of each daily

That without any other medication he may prescribe if my immune bloods come back positive
It's safe to say I'm going to be rattling with medication
I'm £2800 lighter after only my first appointment but I already have a partial diagnosis and that's important and has given me hope.
I'm so thankful I went and I'm actually looking forward to going back for my results in 2 weeks
I will need to do the superovulation program so I know it's going to be expensive moving forward with the scans and medication but hopefully it'll all be worth it soon

@LaurenAB94, that's incredible that he was able to diagnose you like that! I'm so happy you found some answers. The money is all worth it because the NHS, unfortunately, misses a lot of things. I hope these two weeks of waiting go fast for you and you'll have your results soon. :)

@Lalaifa thank you so much. It was a shock but well worth the 8hour round trip xx

@Rebecca9876 I'm so sorry to hear about your twin, sending positive thoughts for your baby and a healthy rest of pregnancy.

Good luck @Lalaifa fingers crossed for your test.

Ive just discovered It Will Happen - currently binge listening to the worst girl gang ever! I like their honesty. 3 of my close friends are about to give birth over the next few months, I'm feeling particularly lonely at the mo so this helps the mental state!

@HoldingOn2Hope a break sounds like a great shout, I'm feeling similar and I'm not even doing the intense Super Ovulation!

@Everhopeful35 that's so interesting re TNF Alfa and egg quality - now going to order Alan Beer's book ASAP 😊 good luck for your chat with Dr S.

I'm waiting for my (extortionate) humira delivery - does anyone who took it know how long you can store it for before starting? Say I decided to start the prescription in January would it be ok to keep in fridge til then?! Sorry - random question.

Also now feeling like maybe I should've just gone to Dr S in the first place instead of ARGC, as may well just end up there and will have to pay for all tests again 🙄 - we are not getting pregnant naturally (am also maybe being impatient) but seems Super Ovulation could be the one rather than waiting in this constant limbo.

Anyway, sending good vibes to everyone, nearly Friday... x

@LaurenAB94 that's amazing news - so glad you've finally got answers. I so know what you mean when you say you're looking forward to getting results! x

@Hazlet2 you could ask your clinic about super ovulation ? They may do it for you and if you decided you wanted to see DrS you could always take with you any tears you've had done to keep costs down. He isn't cheap but so far worth it.

@VenusStarr ooo thanks Ive just downloaded it will happen I'm going to start reading it tomorrow. I've wrote a few romance novels about miscarriage and I've wrote one book about my journey so far called marriage and miscarriage once I've finished my journey I plan on extending the book as at the moment it doesn't have an ending it just says to be continued.

@Everhopeful35 thanks I've also saved the podcast for the worst girl gang ever I've heard of them but didn't know they did podcasts so I'll look forward to listening to them tomorrow while I clean the house 😊

@NICK7nick7 I'm sorry for the BFN and I'm keeping everything crossed that you get your BFP soon it's always a crappy few days after so treat yourself with something nice. I don't know if inofolic would help you it says it increases egg quality and ovulation ?

@HoldingOn2Hope I'm really sorry things are taking a while for you and completely understand you taking a break, do you ovulate on your own ? If not you could try the inofolic you can get it online that increases ovulation or I tried Soy Isoflavones in January and those worked for me unfortunately I miscarried 11weeks later but I did get pregnant where I was stuggling before that. It's such a shame the treatment is so expensive and not available on the NHS

I've been lying low trying to recover but I just saw your message @Rebecca9876 and wanted to send you the biggest hug, I'm so so sorry to hear your news. I'm sending so many positive thoughts and hoping and wishing your other little bean will be ok. I'm so sorry you've had to go through this. x

Thank you @Eeviee. I’ve been thinking of you and I’m glad you got in touch - I hope you are managing to cope and slowly mend. You have all my best wishes xx

@Everhopeful35 yup, I read DeBeers book a few weeks ago. I have to admit I flicked past a few pages - the more technical ones ;). I saw the part re egg quality and potential link to raised TNF Alpha, it would be interesting to hear dr S views on it. I think the book mentioned treating 7000 people with 5 plus MCs and they had a very high success rate!

@NICK7nick7 sorry to hear re your BFN.

@HoldingOn2Hope I hope you can enjoy your time off the meds.

@LaurenAB94 it's crazy that previous scans did not pick up on it but it also gives confidence in Dr S ability.

I had my follow up appointment on Wednesday and I am on the complex plan. I started my loading dose of Hydroxy yesterday. I was asking Dr S his success rate and he really is SO confident. He mentioned 80% of pregnancies are successful and the others are mainly due to chromosone abnormalities or sometimes people just need some extra medication. I need to be more positive and just think why would this not work for me...:)

Happy friday everyone 🥳🙂🙂

So it is another BFN for me. I am devastated, I dont know why as previously it has taken us 12 months to conceive, but I guess being on the treatment and not conceiving is making me worry about money. Might ask about superovulation next month on my follow up, people who have done it, how much does it cost on average per month?

I'm so sorry @Lalaifa ❤️ we've also struggled to conceive and it is a worry that we will again (and then miscarry again). It's exhausting xx

That's great news @LookingforAnswers86 you sound really excited and hopeful :) with regards to the results appointment, does he explain everything with your test results and do you get copies? I'm going next week but I don't think dh can come. So I'm trying to prepare myself for what to expect. Half scared he won't find anything wrong and then scared he will and then can't treat it (sounds like that is super rare though)

Pleased you're getting closer to answers @LaurenAB94 :) I'm halfway through the book - some parts I almost feel she's taken my own thoughts from me head.

I'm still spotting very light brown most days, still no sign of ovulation but I felt like maybe my period was coming last night, am cd17 from what I thought was my period but I'm unsure now. I wanted to start ttc as soon as we can but need my cycle to regulate again. Hopefully when I see Dr S he can advise.

Can't believe it's Friday already xx

@VenusStarr thank you. If your still spotting but no period by your next appointment he may scan you to check nothing else is going on or he may start you on his super ovulation program.
I'm hoping to know more about this when I go for my results appointment, I know it going to be expensive but would love to know what the costs are and how often you have to go to this clinic

Is anyone else on the SO program?? Do you have to go for regular scans ? How many days Po are the scans? I have irregular periods and ovulate at different times each month so just curious when he will scan me? We are looking at starting it at my next period which will be due around 15th December

Thanks for the information in advance

@Lalaifa uck so sorry :( an extra stress you definitely do not need...

@VenusStarr I did my follow up via zoom but they sent me the results and plan before it. I have to say it answered almost everything before I even had the call. I am sure they will give you the print out at your appointment. I would be surprised if he doesn't find anything wrong so dont worry about that :) he would help either way...

@everhopeful35 @hazlet2 thanks for the podcast recommendation, I hadn't heard of it. Definitely will give it a go :)

@hazlet2 yup agreed about the lonely feeling with everyone else being pregnant, I hope we all get there too...just sadly on a slower more painful path...🤞🤞🤞