Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour 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 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@Wishing5tar That's really interesting. I thought the only way you could ovulate more than one egg was either with IVF or by taking clomid (I presume this is different to clomid? Not that I've tried that either!). Did you ask to be put on super ovulation or does he recommend it? Sorry for all the questions and hoping that you're not out this month. I didn't get a BFP until day 11 with my second pregnancy, so there's still a chance.

@Wishing5tar, so sorry to hear of you Bfn. I too couldn't conceive for 18 months after a miscarriage. Every month I was disappointed, the more time it went, the less I believed It was going to happen. I had all of my energies focused on science and IVF. But when it got cancelled, I continued to prepare for it physically. I was taking supplements and doing exercise, pristine diet. Nothing happened. So I stopped believing that it could happen. This is going to sound a bit weird but I bought a book called 'am I the reason I cant get pregnant?' (I know, it sounds smug) I had nothing to lose and I did all the mind exercises in this book. After one month I got pregnant miraculously, although this one ended in miscarriage too. I was so hopeful that I did get pregnant naturally. Btw I'm not paid commission for recommending this book :), but it's worth a read if you feel like it can help. Much love and strength! Xxx

@Everhopeful35 Dr S prescribes letrozole which I believe is very similar to clomid. You take it for 5 days at the start of your cycle, then scan and see if you’re ready to ‘trigger’ and release the eggs. Sex is timed to specific days to increase your chances too. I asked to start it after it had been around 10 months since I started trying again (after my last miscarriage and adding in hydroxy) and I hadn’t fell pregnant. Dr S can recommend it from the outset as part of your treatment if he thinks it’s appropriate ☺️

@Lalaifa thank you for the book recommendation, I’ll take a look ☺️

AF arrived for me today 💔 Ladies I wanted to ask if, and when, you knew it was time to take a break from ttc? It’s weeks away from 3 years since we made the decision to start actively trying (many years before that without birth control and just seeing what happens) and I feel like I’m running out of energy. My husband and I went out for lunch today and we both basically said the same thing - should we take a break, especially from the regime of superovulation, and focus on eating better, loosing weight and getting back into a routine with exercise. It almost feels impossible to to put all our effort into this when ttc takes so much energy and headspace, plus both working full time and my husband recently set up his own business (perfect timing I know 😂) so is effectively working two jobs while he gets it up and running. My head says it all sounds totally logical and the right thing to do however, my heart tells me I’m a failure, like I’m giving up and I’ve ugly sobbed this evening at just stopping all meds, no more cycle tracking and the many many more months it’d be before I have a baby in my arms. Its like I’m taking away all control I have, in this totally uncontrollable situation. Please tell me some of this makes sense and it’s not just the ramblings of a hormonal woman on the edge?! 🙈😭

I need to ultimately decide whether I start letrozole again tomorrow and ring the clinic for my next follicle scan, or ring the clinic and tell them that we’re taking a break 🤷🏻‍♀️ HELP?!

@Wishing5tar I'm so sorry to hear this but you sound in a not dissimilar place to me (although my stopping was forced!) the guilty feeling for feeling like a failure and wondering if you'll regret it later - I have to say, the last few weeks of moving away from the obsession with diets and supplements and drugs and dates, temperatures, opk's, bfn's, symptom spotting, appointment tracking/booking and second guessing - has been really healthy. I am really battling with the next move and what is best for us to do but that on its own without all the other pressures makes it easier for me to focus on it with a clearer, less overwhelmed mindset - if that makes sense?! Having previously been really skeptical about the power of mindset I really feel now that it makes a huge difference, the pressure we put on ourselves has a huge impact on it all. I'm a big believer in relaxing and re-generating some energy for all this rather than forcing yourself to carry on. So no you're not a hormonal woman on the edge - just maybe in a need of a break to remind yourself what you're doing this for. And what ever you decide is absolutely the right decision, for all the reasons you made it in the first place x I hope that helps and good luck x

@Wishing5tar I'm not sure I'm best to advise, as I'm the type of person who is always thinking 'what next?' But I do know that the enforced time off between miscarriages does give me a glimpse into my old life and I appreciate so much having the pressure taken off me. No tests and medication, no constant anxiety and build up to dreaded scans. If your gut instinct is to take some time out, I think you should do it. x

@Wishing5tar And thanks for your advise on super ovulation 😊

@Wishing5tar firstly sending you lots of love! Everything you said makes sense, and I think it’s important we recognise when enough is enough. This journey is exhausting, and unless you’ve experienced it, it’s difficult to comprehend how it consumes your every waking moment. Even things like should I have this glass of wine, because I may be pregnant, worrying about whether we have enough ovulation sticks, did we test too early - the list is endless. Sometimes we need some time to be ‘ourselves’ again, because our happy self can easily get lost in the misery that is RPL.
Go have some fun - Drink cocktails because you can! Have sex when you want to, not when you have to! And you never know what will happen 😊

@Wishing5tar not meaning to complicate things for you further, but if this was your 4th cycle of SO, and the rumour is it tends to take 4-6 cycles, I think if it were me I would be tempted to keep going another cycle or 2. Maybe you could plan to take a break in X months time instead of just stopping right now while you're not entirely decided? Although saying that, that probably adds tons more pressure and defeats the point 🤯

Hello ladies, I've been lurking a while. I'm currently going through my 3rd mc. I already have a ds aged 3, conceived very easily. I have booked an appointment with Dr S for 3 weeks time. Does any one have any recommendations /watch outs for the appointment? I figure there will be a lot of cross selling?

Does he investigate other things in bloodwork like thyroid, hormones? As I'm not sure what my issue is. Basic gp tests all came bk normal.

Is he currently prescribing pred or is is the other one (hydroxy?) which you need to take for a while before ttc.

I'm very keen to get cracking, as I'm sure everyone here is

@Whyisthistakingsolong I'm so sorry to hear that you're going through your third miscarriage. My heart goes out to you, having just had a third myself. The ladies here are so supportive and are a mine of information, so can probably better advise than I can - I have my follow-up appointment with Shehata tomorrow, so I'm still a little in the dark myself. But didn't just want to read and run.

I have a question for the group, too, actually... My period STILL hasn't returned since my miscarriage six weeks ago. Is that normal? I had a scan at the hospital two weeks ago and they said I had a small amount of retained tissue, which should pass naturally or be reabsorbed by the body. Doctor said my period won't come until that happens. But not sure whether my period will happen after that or whether I'll ovulate and then have a period in a few weeks. Very confused as to what's going on with my cycle. Both my previous miscarriages were D&Cs and my period returned exactly four weeks later.

@Whyisthistakingsolong I am sorry you are going through your third miscarriage. :(
I had my first appointment with doctor S three weeks ago. He tells you what tests to do according to your history. He does look at thyroid, thyroid antibodies and NKs. In my case because of delayed conception he ordered the AMH test too for ovarian reserve and day 1-3 bloods (FSH, LH and Oestradiol). He also did a scan and measured follicles and identified that I had a thin lining. So treating that atm. I completely agreed to do all those tests and didnt feel like I was being pressured into anything. I have the follow up on Thursday with the results from all the tests. It's nerve wracking!
@Everhopeful35 I hope your appointment goes well tomorrow and you get some clarity about what's going on. Maybe if he scans you, he will be able to see and recommend what to do about the retained tissue? If I was you, I would definitely ask him. Fingers crossed for tomorrow!

@Whyisthistakingsolong so sorry that your going through your third miscarriage. I’m not a patient of Dr S so I’m not able to answer your questions but I hope he’s able to work his magic for you 🤞🏻

@Everhopeful35 hope today goes well for you and you get some answers/an action plan

Hi ladies, I had my follow up/results appointment with Dr S today and not sure how I feel. My NK cell count was normal but the activation/aggression level was very high. My TNF Alpha was also very high. He's put me on a complex plan and has recommended Humira straight away to bring down my levels (hopefully) and then recommends taking Hydroxy thereafter, plus steroids at the point of IVF transfer. I felt relieved that perhaps I'd got to the bottom of the cause of my miscarriages but worried to be an extreme case. He said without these medications, my chances of a live birth are about 10-15% 😔 Dr S said it was good news, though, because now I'm on the road to resolving this. Anyone else here had extremely high levels and been put on Humira? Xx

@Everhopeful35 that sounds like positive news-great to have a diagnosis and a plan. Have you had Ivf before? I guess they aren't giving steroids atm in general?

@Lalaifa good luck for your appointment, keep us posted.

@Jellystar23 thx for your kind words!

@Everhopeful35 thanks for your update. I can understand your mixed feelings about the diagnosis and the treatment. I hope you can keep hopeful and get the support and understanding you need to carry out the plan. Trolling through the internet today I have seen this website which explains a lot about immunology and treatment in anticipation of my appointment tomorrow. It does mention humira and how it works. There's lots of info there if you want to take a look:

ofrjosemi.wordpress.com/astaedur-ofrjosemi/onaemiskerfid/fullt-af-frodleik-um-ivf-onaemismedferdir/

You have a lot of info to digest from today, please be kind to yourself and give yourself time to process this info. Xxx big hugs

Hi @Everhopeful35 yes me! The way I understand it, TNF Alpha and NK are separate things. So you take Humira to lower the TNF alpha, and then you take the hydroxy/steroids to lower the NK. My NK cells were both high and aggressive, and TNF high. I seem to remember none of them were particularly high though, for example if the normal range for NK was between 100-200 then mine were 204, something like that, although Mr S said he would have treated me if any one of these 3 were high let alone all of them. I can dig out my results tomorrow if you want to compare. I took the Humira, it's 2 pen injections you do yourself, you don't even feel it and I had no side effects whatsoever, it is pricey though, around £1k, and hard to find, I brought it from a private hospital in Wimbledon the clinic recommended as I couldn't find it myself. I then took prednisone from ovulation, but this was pre Covid so I think Mr S is prescribing the hydroxy instead at the moment.
I felt exactly like you, I went hoping they would find something to fix but expecting another 'sorry, all results are normal' and came away a bit in denial thinking 'surely there can't be all these things wrong!'
But, it worked for me, I now have my rainbow, there's no reason it won't work for you too. Happy to answer any questions you have ❤️

@Chickjen Thank you so much for replying and amazing that you ended up with a successful pregnancy so soon after taking Humira. Congratulations on your rainbow baby! It's also reassuring that the injection is easy and there are no big side effects. My levels were ridiculous - TNF alpha should be below 1.8 and mine was over 3 and NK cells aggression should be below 31 I think and mine was in the fifties 😩 It's good to have a reason, but I didn't think I'd have such a huge problem. How many miscarriage did you have before taking Humira, if you don't mind me asking? I've had three and a chemical, so I must say I'm willing to try anything at this point. Xx

@Lalaifa Thank you for your kind words and for sending that link! I had a read of some of this info last night and it's really helpful. Do you know who wrote it? Seems like it must be a doctor or nurse, but couldn't get the bottom of it!

@Whyisthistakingsolong Thank you - yes, hopefully a plan and diagnosis will get me on the road to a successful next pregnancy. But I'm so reluctant to believe anyone/get my hopes up at this point. I had IVF with my latest pregnancy; I can fall pregnant without it but we decided to do it to try and take control over the process in the hopes of avoiding another miscarriage. We're sticking with IVF now as we've decided that we'll do PGS testing on any embryos before they're transferred, just so that another box is ticked (Dr S isn't a fan of IVF or PGS, so had to stand my ground on that one...).

@Everhopeful35 I just looked up my results, I think we have slightly different reference ranges but mine do seem lower than yours. NK aggression should be less than 0.8 and mine was 1.2, and TNF should be less than 31 but mine was 34 (down to 18 after the Humira).
Before seeing Mr S I had had 3 MC's where the baby stopped growing between 8.5 to 6.5 weeks, earlier each time but heartbeats seen in all 3. And 3 very early/chemicals lost at 5 weeks. I did actually have another loss during my denial stage after my results, I started the steroids after bfp but still miscarried at the 5 week mark. I then took the Humira and conceived the very next try but that ended in a very early chemical, from bfp to bfn was only a few days, but with hindsight I do blame my husband for that one! We did the sperm comet test after that and he had quite high damage and admitted to having 'painfully hot' baths 🙄 So 8 losses in all, and the successful one was in the 3rd cycle after the Humira.
Hopefully you won't make a hash of it like us though and it will work first time ❤️

@Everhopeful35 my period came about 6.5 weeks after this last mc in June. The last 3 mc's my periods returned with 2-4 weeks so I was getting stressed and I don't think that was helping. I hope it's not too long for yours to return. Xx

Hello ladies, so finally after the follow up today, I have learnt that my NK Cells are very high and also they have very high activation. He recommended hydroxy, intralipids and progesterone. He also checked my lining and it had improved much more after taking progynova. I am very optimistic right now, so so happy to finally have a diagnosis. We are going to try from next month, although my partner's dna damage was 23%. We didnt want to follow the male plan because it was so expensive for damage that can be corrected if he stops smoking, takes antioxidants, limit drinking etc. Has any of you followed Shehata's plan for male fertility?

@Lalaifa Amazing news that your lining has improved! You must be so happy. Like me, you're in that situation of receiving bad news but being relieved, in a way, to have a diagnosis and a course of action. I can't help much on male fertility - my husband has still yet to see the urologist regarding his elevated result (16.9%) although in the meantime he's taking better supplements (ProConceive rather than Wellman, on a woman's recommendation on another fertility board) and Impryl supplements. I think Shehata's clinic advocate Impyrl (I saw a leaflet on them in the clinic yesterday) and a friend of mine's husband was also given this at their IVF clinic. It takes three months to work, so might be best to invest in some now?

Hi all, I'm just catching up on all the msgs. Welcome to the new people although sad you're here at all.

@everhopeful35 for my last miscarriage, it took 8 weeks for me to get a negative pregnancy test but I got a period at around 6 weeks post loss. I panicked something rotten as after my late loss, it had only taken 5.5 weeks to come back.

Similar to you @Lalaifa I felt relieved to have found an answer and also proud of myself for trusting my gut.

For those being offered the ovulation intalipids and are unsure, I am a fan. I hope I never have to go back on those steroids. They really weren't for me. I feel more myself this month. Husband and I are also getting a puppy which I'm delighted about and its helping me not be so baby focused (as I have a needy thing on the way ❤). Katy xx

@KtAgs Thanks for reassuring me - it's good to know others have long waits for their periods to return. I've had some period pain the last couple of days but still no sign. How exciting that you're getting a puppy! What type of dog? We don't have pets but I'm always tempted to get a cockapoo as they're so cute! A distraction and something to dote on is definitely a good thing, I think.

We finally had our genetics report back today and found out that the foetus was Trisomy 20 and it was a boy. Could have done without knowing the sex 😔 Can't decide yet whether I'm relieved or confused. Dr S has said there's clearly something wrong with my immune system so I expected the result to be normal. It's made me more determined to do PGS testing now with our next round of IVF. Hoping that combining this with all the drugs will give us the good luck we need.

@Everhopeful35 I can’t imagine how upsetting it is when you find out the gender. Sending you a big hug! I’m dreading it myself. Do you find you feel relieved knowing there was a chromosome problem, and so it was out of your control?
I’m hoping that is the case when my report comes back, but don’t know if I’m setting myself up for a bigger fall.
Do you mind me asking how you got the report after? Was it by ringing your local EPU still? Xx

@Jellystar23 Yes it's a relief to know that this one was always going to fail. But it's upsetting because our consultant talked us out of PGS testing with IVF and perhaps this could have been avoided. (Though, if my immune system is a problem too, it probably would have failed anyway!) They picked the two best grade embryos - day five blastocysts, both grade AB - which goes to show that even the best 'quality' can have a problem. I got the result by tracking down (with the help of my GP) the direct number of the genetics department and chased them a couple of times a week. On Friday, they said my report was ready and had been sent to the doctor at the hospital, so I rang the EPU and stressed that it was important I knew the result ASAP because I was about to start a treatment course and the outcome would affect this (in reality, I was always going to take the immune drugs but I laid it on thick). They gave me an email address to send a message to that affect, which the nursing team sent onto the doctor. Then the report was suddenly emailed me today. So just keep chasing, is my only advice. Good luck xx