Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Hi billy, God it sounds so stressful. Not being able to quickly find out practical information when you having to deal with all the emotional and physical sides of the loss. I don't know any of the practical details about testing the fetus as I have never had it done. I hope Louise responds to you today so you know what to ask for tomorrow. Sending you loads of support for the ERPC tomorrow and for the healing on many levels afterwards. I had a low of all low days yesterday (I am 5 days post miscarriage) but today seems a bit more stable. It's now the up hill battle before getting the courage to try again.

Annaif: thanks for sharing your story and so sorry to hear of your losses too. I can't imagine how hard it must have been. My latest was 10 week and I found that full on enough. It sounds like you have, as you say, done the rounds. So frustrating to have continued to have miscarried on protocols. It defiantly sounds like immune stuff is relevant to you with Hashemotos. Let's hope Dr S protocol is the one for you. I have had thyroid checked and most other things.

I found they were totally lovely in coventry. The problem was my GP would not prescribe the medication so I had to keep going up there to get a month supply of meds and that just didn't seem sustainable when I was just preg. I also think my problem starts before BFP and do need steroids or something earlier on but I do not have the guts to self medicate and not be under a doctor- hence Dr. S. Epsom have given me a follow up appointment 17 weeks after my ️bloods have been taken!!!. I had such a low day yesterday and took out my frustration complaining to their PALs service and then booked a private appointment with Dr S (or is he Mr S?). To get my ️bloods read. This is still 6 weeks away.

I find all the testing really soul destroying as it is a constant reminder of what is not happening. As we all do I just want to take home a live baby.

My 3 year old son said to me yesterday (I was in floods of tears after being told I would not get seen before 23 sept at Epsom and no point trying to get a cancellation). "I don't want you to be sad mummy, I want you to be happy". I explained to him that going to doc docs makes mummy sad sometimes. He has had to come to so many appointments with me, including scans where we found out we miscarried. As you say it effects the whole family. My last miscarriage I totally felt my husband would say was the last. But we talked and his main reason was he couldn't bear seeing me go through all the testing and heart break each time. So I reassured him I was willing to go through it, for now. We now know the process and that we have a couple of funky months and then we all pick up. I have been really trying to get my head around my son being an only child (no upset meant to anyone TTC first) and I feel I have made progress with this but I am still not ready to give up yet. However, it does sometimes feel like it is not good for the family we have going through the repeated loss.

Anyway, nearly at work, I have decided not to go to my team meeting this morning as I can't face everyone- going to hide in an office. Thinking of you for tomorrow- billy

Wishing you well Billy

I had my follow up with Mr S today. Thankfully my thyroid function is where it should be - my TSH is at 1.47 on a dose of 25mg.

He advised me to try one more cycle 'naturally' (that will be my third on the prednisolone). I had day 3 bloods taken to check my fertility level - a bit apprehensive about what the outcome might be but ultimately it's best to know!

He did also give me some letrozole which he said he was happy for me to try on cycle 4. Is anyone else on this plus the steroids?? I'm starting to build up quite a collection of tablets - my cupboard looks like a branch of Boots lol

X

Thinking of you today Billy, hope things go smoothly for you. Wishing you a speedy recovery and sending lots of love for the emotional healing afterwards. Take time to heal your heart, it's been through an ordeal.

Karry I think a fair few of the ladies on here have done Super Ovulation (letrozole) so will have taken it with pred after ovulation. I was just about to start myself when I got my bfp.
Hopefully you won't need it in the end.

Hi to everyone else. Hope you're all ok.
I had my 20 week scan yesterday and baby is growing well and everything looked healthy. Such a relief! The little rat bag was certainly testing the sonographer- hands over her face, over her chest, feet crossed over, in the air... Took a while but got all the measurements in the end!

Thanks Seeking

Great news about your scan - she sounds like a handful already...lol

Wonderful news on your scan Seeking, that's exactly what you need to see on the monitor: a healthy, bouncy and wiggly little creature. Hope your scanxiety is reducing every week that goes by (I think I've developed a scan phobia myself as well as so many other ladies on this forum)

Karryk: why did S suggest going to SO? I am actually thinking that next time I see him (due end of June) I will ask for it myself, due to irregularities in ovulation etc. I've booked me in for the Lister too, seeing doctor Thum on the 10th of June and depending on whether he does similar things to S, I may transfer my case to him as I can't be doing the trek to Epsom every single time- especially if I am to have another pregnancy which will need monitoring every 2 weeks. His London clinic is closed "for refurbishment" but I doubt that there are any plans to reopen any time soon...
Good news about your thyroid levels too, I'm still at 3.6 with 1.5 months on 125mcg a day (blooming Hashimoto's won't give me a break with this)
The good news is that my antibodies have dropped dramatically from Jan' to May, prob due to the pred?

Billy: you've been in my mind constantly, I really hope it goes as smoothly as can be and that you sort out the testing procedure without any more dramas. Please take case of yourself and be gentle. And eat lots of chocolate and drink some nice !

Hello Anna

I asked him for an opinion on how long he thought I should keep trying naturally taking into consideration my age. He said ultimately it was up to me as to whether I wanted to take the next step - I said I'd be up for it so he suggested that I give it one more cycle and then try SO. I asked him about the Harley St clinic as Epsom is a bit of a trek for me also. He didn't give a date (or at least I can't recall him doing so) but he said refurbishment was going to plan so it should be open again...just not sure when Is Lister a similar approach then?

Sorry to hear about the TSH battle...I was surprised to see how low mine was actually - been really bloated and shedding lots of hair the past month! Must be the steroids instead!

Seeking!! What wonderful news!!! I remember being so nervous about the 20 week scan as its really the last big NHS milestone. So happy to hear it's gone smoothly and you can cross that worry off :)

Karry- I did SO and it worked for me first try with the little boy I'm carrying now :) though I don't think that's been the case for most. The reason I did SO was because after getting pregnant so quickly four times (3 times fell pregnant in first month, then the fourth on the third month), I was 5 cycles in to trying again (spending loads on pre-ovulation intralipids) with no BFP. I wanted to try everything to not make it 6 straight BFNs and was seriously concerned as to what may have changed in my body... Was even considering IVF clinics in case SO didn't work. I'd also read many anecdotes about how even if fertility treatments like letrozole didn't work, they sometimes 'shook things up' or reset things to eventually lead to a healthy BFP. So thankful I did it :)

Oh always I suffered from recurrent chemicals and came across a blog of a woman who swears by a very similar SO protocol for her recurrent chemical pregnancies- Her RE believed it helped in releasing a good mature egg and providing it the hcg support it needed early on (via the trigger shot). Since doing the protocol she had 3 healthy pregnancies in a row... So needless to say I was very interested!

Hi ladies,

Not been on for a little while, whilst hoping for a BFP. The information regarding SO sounds very interesting indeed.

According to two digital tests I am pregnant, BFP x2 - which has to be a good sign as they are digitals, I was rather excited (wish I could be more excited but certain amount of fear too) An hour later I have stated to bleed, doesn't seem overly heavy but I do have cramps and I have no idea if it's over before it's even begun again! As I did a test yesterday that was negative if it is not going to work it seems even more cruel than normal.

If this doesn't work out and I hope with everything it does then this SO sounds very interesting, every time I ovulate I get pregnant they just don't seem to want to stay. I'd be interested in a link to the blog you describe Drttc if you can point me in the direction?

Hi everyone, TGIF!

Karryk: thanks for all the info, I will def discuss SO with Dr Thum next Friday and see what he says. Another lady who swears by his treatment says that he actually studied in parallel with Dr S and they are somewhat competitive with each other, following similar protocols and using the same lab- so I am hoping that he will have all the meds available like S does. He certainly offers the choice between pred, intralipids and IVIG depending on what the NK assay shows as a response to different treatments. Really hoping he can give us some assurance on this.

Kittens: fingers crossed this will work for you. Have you heard of Coventry's hyper fertility theory and their approach with progesterone from 7 days post ov? It's usually intended for women who fall pregnant very easily and have a pattern of very early mc's. Hopefully this won't be necessary, just thought it was an interesting reference.

Drttc: how far along are you now? All the info on SO is very helpful, thanks for posting it- I think it's our next step forward....

Billy: how are you doing today? Did everything go ok? Big hugs

And just a general question to all the ladies in the group: has any of you had your OH's sperm tested and has received results which show poor morphology? I dug ours out from last August and although there is reference on the above and a note "to repeat test and discuss possible treatment plans", no consultant who has seen this was in any way concerned or interested (including Dr S) as I "seem to be getting pregnant without any problems"....(but losing the babies since '14 incidentally).
I know that rmc treatments are mostly focused on the quality of the egg but having read "It starts with the Egg", there is a chapter about how sperm can be culpable of recurrent losses. Just find it bizarre that no consultant we've seen (including Coventry, Shehata, St Mary's London and UCLH) are in any way interested in pursuing this.
Any thoughts!?

Hi all,

So I've now had first consultation with Dr S. It was all very intense and I left that beautifully stylish building at Epsom in a bit of a spin. After my 2 late losses last year the NHS told me I'd been tested for everything, including blood clotting, CHI etc. I also met with a private endo who confirmed that my thyroid TSH and antithyroid antibodies of 100 were responsible for the losses.

But Dr S looked through all my NHS blood test notes and said the NHS had NOT tested me for all of these important things. He also said that my thyroid was definitely not to blame for the losses. He suspected immune problems that caused the placenta to fail at around 14/15 weeks in both pregnancies and starve the babies.

So I left the offices nearly 2k out of pocket and nearly passed out after all the blood taken...and the costs. However I felt relieved to finally talk to a real pro who knows his stuff and to also feel slightly pampered after being seen/treated in such a lovely place and not at my awful local hospital.

....also, we are very very lucky to already be blessed with 2 children and because of this he said my case was very unusual and also that later losses are harder to treat. So I'm nervous and interested to see the results. The tests were massively expensive but if they get to the bottom of why we lost our 2 little babies them so be it. Then it will either be closure for us or it will go the other way and we will have a plan of action.

Sorry you're bleeding kitten, it's soul destroying. Have you had any breaks inbetween your pregnancies? I know when you're trying the thought of a break seems completely unbearable but sometimes your body really does need a break- especially if you've fallen of a number of times consecutively. DrS insisted on a 2 cycle break after my loss last year. And while I didn't want to, mentally it helped massively.
I'd definitely ask about progesterone between ov and (hopeful) bfp.

My NHS failed to test for a few of the more common thrombophilias too marmite, so ended up costing me more when I had my initial test done. Hopefully it'll give you some answers. When is your follow up appointment.

End of June. I'm guessing the NK cells test goes off to the US??

Hi Marmite,

I don't think Dr S sends the bloods to be analyzed in the US (namely, the "Chicago" test)- I think it's all done in London. I gave the bloods directly to the lab on Harley str and got my results in 2 weeks as well.
Hope you get some answers and a suitable treatment plan soon x

Thanks Anna, I'll jump back on soon once something to report.

Thanks all for the SO stories - I'm filled with a bit more hope now!

Sorry to hear you're having bleeding Kitten. Fingers crossed for you x

...and welcome Marmite x

This is the blog (specifically the page where she describes her protocol):

recurrentearlymiscarriage.wordpress.com/my-success-after-recurrent-chemical-pregnancies/

The Dr S one was pretty similar except that the trigger shot is done to ovulate whereas in her protocol it's also done later to support the pregnancy. I was never quite sure if I did my trigger before I naturally ovulated (all my opk's were very stronger) but it was certainly very close to when I ovulated.

On Sunday I'll be 30 weeks :)

Thank your for the well wishes - seems to have slowed down a bit so am hoping this is positive. It was heartbreaking to have digital positives and a very strong early today only to find bleeding a few hours later, hitting me harder than usual this time it seems more cruel, if the bleeding had started yesterday I wouldn't have tested and would be none the wiser, I'm not sure if I would have preferred this in some way.

I actually started taking progesterone this time at 7dpo as I had what I thought might be implantation bleeding and actually had a meeting with the reoccurring miscarriage clinic the same day and they suggested to start it early, which I did - but stupidly missed a day and hoping that is not what caused this.

I have also had breaks inbetween, although not between this and the last one, at 38 fast approaching 39 it is a dilemma to miss a month given the problems we are having and my age, but agree sometimes I think both physically and emotionally you need to take a step back.

Just keeping everything crossed here and hoping this is just "one of those things" I had some cramping three days ago but on the opposite side to the implantation pain I thought I was having so am hopeful that this is just some form of implantation bleeding as am a hormonal mess, with lots of pregnancy symptoms - always hits me quite hard, quite early.

I think if this doesn't work out then off to Coventry I will go :) a lovely lady here recommended via a PM (sorry i can't remember your name)

Thank you for the blog link I shall have a look at this! For now I'm watching trashy TV curled up on the sofa with the cat :) seems to be helping a little.

Hi All - and welcome to marmite and Kittens.

I have been on holiday last week to cornwall which was a lovely break.

Billy how are you? xx

Hi to everyone else x

Hi ladies, hope it is ok if I join in. I had a good read of this thread and some previous ones (that is a lot of reading and info!) and am sorry for everyone's losses and the heartbreaking journeys, it's tough!

I am in the same boat, after 3 losses, at 6w and 5w - natural and 9w (mmc after seeing a HB 2 weeks prior), and with all St Mary's blood results getting back perfect, as well as genetic results from the last mmc, I went to see Dr S. I never had trouble falling pregnant and things worked out the first cycle. I am now awaiting my first scan which will be at 7weeks and growing ever so nervous, especially since I hardly have symptoms. I was told Prednisone masks pregnancy symptoms while progesterone simulates then even in non-pregnant women. Pretty confusing! For past 2 days I have had scary dreams and a constant panic that things are not progressing, I just need to wait out one more week and hope my gut feeling is wrong. Driving myself mad with googling too which is silly I know!
I also have nobody to tell apart from husband whom I don't want to stress as I know he is anxious too, hence joining you ladies, hoping that writing it all down will make the nagging voices in my head disappear.

Billy, I know I am new on this thread but I read a bit of your story and my heart goes out for you! Wishing you a speedy recovery, be kind to yourself xx

Re the renovations, back in April (just before Harley practice closed) I was told it would take 3-4 months, so I assume by August/September it should re-open again?
Epsom really is a long way away, but hopefully all worth it.

Hey casepoia welcome to the thread. Pred defo masks symptoms for sure. So sorry to hear about your previous losses - and congratulations on your pregnancy now. Everything you are feeling is normal and you just have to remember that the absolute ONLY way you will know all is ok is when you have a scan. The feelings you are feeling mean nothing (as in the gut feelings) so your worrying is useless at this time. That's not to say that I didn't and haven't done the exact same thing as you. :-)

And what did Mr S find with your NKC score? xx

Tumtimes1 thank you, all you say makes perfect sense. I am feeling much better, I think I just had 2 very low days (and nights), now I am just waiting out till next week.

My results, total NK count was 17% and activation marker 1.1, both higher than norm. To be honest, I am lost in numbers. He said I would be one of the simpler protocols, as it is not dramatically high , but raised above normal enough to be causing the MCs especially since the karyotyping/genetics showed there was nothing wrong and all other tests (NHS, private and also his) showed nothing else.

How are you? What was your protocol?

So that sounds a lot like mine. I can't remember the numbers EXACTLY but I was borderline high so I was on 25mg of Prednisolone for the first trimester.

My other doctor prescribed Clexane as well as I am MTHFR positive.

Owing to the above I now have a little girl (after three MC's) and am pregnant again at nearly 25 weeks. xxx

Best of luck at your scan next week - please keep us all posted. I have my fingers firmly crossed xx