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 tumtimes :)

Yes it was a first response test. I'm not holding out much hope to be honest as for the last few cycles I've started spotting about 5 days before my period starts and the same thing is happening again this month. I'm wondering whether the miscarriage might have sent my hormones out of whack or something. I'll mention it to Mr Shehata next week.

Feeling a bit sad at the moment but am sure it'll pass.

Wish you lots of luck with your scan x

Sorry Karry about the BFN- it's so disappointing when it happens isn't it?
Are you seeing S next week to discuss next steps or just as a routine visit to check your reaction to the pred? I am due to see him sometime end of June, after 2 complete cycles on the pred.
From memory, you haven't been on the treatment plan for very long, have you? How high were your NK's?

Are you monitoring ovulation monthly?
One of my issues is that I am not entirely sure I actually sure I ovulate every month (opk's don't really work for me, never got a properly positive line on them even when I conceived) due to PCO's....

I did some further thyroid investigations whilst back home last week- as it's so much cheaper to do them privately there than in London- and my TSH is still at 3.6, despite the very high thyroxine dose I'm on for over 2 months now.... antibodies still quite high and that scares me the most.
Hopefully the pred will be able to keep them at bay

Hugs and don't lose the faith, it will be good to get him point of view when you see him next week.

Billy: let us know how the scan went, keeping everything crossed that it's all super well and bang on your dates! xx

That happened with me - my hormones went all crazy. So its possible. I fully understand how deflated your feeling - what day do you normally come on your period? Or has it been all up in the air since the MC? x

Annaif I too had this issue with ovulation. I was so so sure when I ovulated like clock work and then suddenly for no apparent reason it all went up the spout and all of a sudden my monitors and tests were not showing ANY ovulation. So I had a Progesterone day 21 test and it said I actually wasn't ovulating which was a huge shock. The only thing that worked for me from then on in was clomid. x

Bad news yet again! Baby stopped 2 weeks ago at 6 weeks! I can't believe I have to go through this yet again. And have to make THAT decision about how to manage it! Dr s said we should have chromosome testing if we want to keep trying which would involve d&c or mva. But me and dh hadn't discuss/thought about what we'd do if it was bad news so now I feel totally unprepared and at a complete loss! How can we continue after so many!

hi Tumtimes, wow that is so strange.... was it after a mc or a medical procedure that you stopped ovulating and at what age (if you don't mind me asking?)
Just turned 40 recently and freaking out about it- certainly doesn't help with not adding stress to the mix!

What is a Progesterone 21 test? Was it offered by Dr S? I wonder if I should ask about Clomid in June when I next see him as opposed to waste more months trying naturally if my ov is rubbish xx

Hey Annaif I'm 37 and 38 in Sept.

So it was actually after Id had my DD1 - about 6 months. I felt some strange pains in my uterus and I went for a scan on NHS. Told my GP I had bleeding too which was a white lie but I knew the pains were there. Periods seemed the same.

The scan revealed polycystic ovaries (not syndrome and all new!), and endometriosis (again all new) and Adenemyosis (again all NEW). The doctor at the scan asked me my age and if I wanted any other children given my recurrent MC history. I said yes, and he said well you better get going asap with these issues above.

At which point I went home and dusted off my clear blue fertility monitor and all my usual tools. I very quickly realised that the usual ovulation wasn't appearing. This was over three months.

My NHS consultant then ordered the blood test which is taken on day 21 on your cycle to measure progesterone. (Note this is for cycles between 28 and 35 days) and the score was only 14! Which means NO ovulation.

I was so shocked and to this day I don't know what brought it on. They put me on clomid immediately (would need to check dose) and diagnosed me with sub fertility issues. Again which had never been an issue.
I was also booked in for a laparoscopy and Hysteroscopy (all on NHS but under special consultant) and they flushed all my tubes out and burnt away the endometriosis they could. The first month after starting the clomiod I went for a scan and it showed Id ovulated. I then repeated the progesterone test and it was 65!

2nd month after that I got pregnant and went straight onto my Mr protocol of prednisolone and clexane.

Sorry for the long winded story! If you don't think you're ovulating go to your GP and say you have been trying for 1 year, and you have tried ALL OV devices and they will order the test for you. Shehata would also defo do it for you. xx

xx

Oh Billy, I'm so sorry for you hun :( biggest hugs xxx

I'm a bit pants at knowing what to say to console and Lord knows there probably isn't anything I could say in any case that would make it better. Just know that we're here for you and you'll get through this xx

Hi Anna :)

It's supposed to be just a routine check with Mr S next week - this was my second cycle with the steroids. I should also get the results of my latest thyroid tests so that'll be interesting - I went down to 25mg a day as my TSH levels plummeted but lately I'm sure I'm shedding more hair and just been more bloated so I suspect he might adjust my dose. My starting point was 6.67.

My total nk cell count was 313.1. The rest he said was normal so it's only in pregnancy conditions that the cells get aggro as it were.

Ovulation wise, I've never got the hang of the pesky sticks. But I've been monitoring my temperature and watching for fluid changes. I see a very clear shift in temperature around day 15 every month (28 day cycles) which coincides with the ewcm appearing. I'm frustrated by the pre-period spotting though...I wonder if it's a sign of low progesterone or something. Dr Google alert! :) I've made an appointment with my gp as well now, might as well throw the kitchen sink at it...!

X

Billy I missed your post I have been checking back constantly all day.

I am beyond gutted to read this - I really felt this time would be different and I just can imagine the disappointment and upset you are going through.

I know its hard to fathom but I think you should consider the chromosome option if possible as Mr S advises. I think it would be useful in understanding the possible cause for this loss (it could be chromosomal which no one could have prevented) and it may give you the strength to consider trying again when you feel ready. This is horrible news and I just feel so FUCKING ANGRY on your behalf. Its not fair.
I'm so sorry lady. xxx

Oh Billy I am so sorry- I also missed your post amidst the other stuff we've been discussing today.
It's truly heartbreaking and just unfair, how are you holding up love?

It's one of these situations that you just don't really know what the best way forward is..... I too feel really upset and deflated on your behalf that this has happened again. It's just really really sad and unfair :(

I don't really want to upset you by discussing the details but surely you should be able to decide if you want to let it happen naturally but still get to test for genetic issues? I am sure it's easier for them to manage it all medically but if you don't want to got through this process then you shouldn't feel the extra pressure to do so. Again, I don't wish to upset you in any way so please ignore the comment it case it did.

I am not sure what to say that can make anything better at this point, I am sending you a big hug and all my support should you need it.
xxxx

Oh Billy I'm so so sorry :(! This isn't fair and it just never seems to make any sense. You've been so patient to and to get this news is devastating. Wish I could give you a big hug...

I'd see about having tests done to confirm if it was chromosomal as that's really significant. Once again I'm so sorry and hate that this has happened to you :( xxx

Thanks ladies
I'm really struggling. I have to make a decision as I've started cramping and don't think I've got long before the miscarriage happens.
Dr s said they can't test from a natural mc as it gets contaminated. He also said its best that dr s clinic test it as they get better results (I had nhs testing on my second mc and came back inconclusive). So I'm ok with them testing it (£350). But I'd have to have d&c or mva. With mva there's no need for general. Has anyone had one? But don't know as yet if my nhs do mva and if I have it done with dr s will cost £1700!
I could have d&c at nhs but hate having generals and last time it was pretty nasty and knocked me out for a couple of weeks (I can't keep taking time off work!!)
So so fed up of all this. I've spent SO much money, so much holiday days off work, it's been nearly 3 years and I turn 43 in August. Work will be a busy knightmare again in September as I run workshops at a university. This summer was my last hope!!
Sorry for being so negative- I just don't know what to do anymore!! I just want to grieve and let my baby pass but yet again I'm faced with excruciating decisions!! And decide if we can keep doing this. And have to go to work tomorrow. I seriously feel like leaving my job.

Oh Billy, I am sorry it's all so difficult and mounting up so much. It's always tough with work and I can imagine that after a point, it becomes a stress to take time off every time a pregnancy or mc happens. I truly hope they will be supportive and sympathetic for you- have they been made aware of your medical history?

Do you have private healthcare insurance from work by any chance? When I phoned mine to check whether they could cover some of the Shehata immune related costs, they basically said that normal insurance policies wouldn't cover anything related to fertility investigations (autoimmune or not) but they would cover the medical costs of anything related to miscarriage management and hospitalization- which is what your costs related to the procedure itself will be.It would be great if there was something like that in place.

I haven't personally done an MVA but a couple of ladies on the facebook support group have and reported that it was not as bad as they thought- more crampy and uncomfortable than anything else. I've not really had a natural mc either so can't compare it, but share your view about G/A as it's truly awful and knocks me out for days on end.

I wish I could help out in any way, it's so difficult to manage the emotions immediately following such sad news. Let us know if there is anything we could do to help xx

Billy I am sooooo sorry No words can help you right now. Just know that we are all thinking of you.
With my last mc I had chromosome tests done, which proved it was chromosomal. I made me feel so much better about trying again.
I had a d&c on NHS and used drS lab for test. He gave me a pot and form there mad then, I took that with and told that under no circumstances was it to be taken to the NHS lab. They were really good. Dh then had to take it to the lab in London. Was a bit of a mission but the results took 6 weeks rather than 3+months on NHS.
What is important now is that you look after each other. Cry, scream if you need to. It's so unbelievably unfair.
Sending you a massive hug.

Sorry you're feeling down about your bfn too karry. Took me 6 cycles this time round and I found it sooo hard each month. See what DrS suggests, he may suggest SO. That was our next step.

billy I'm so sorry, I really expected to see good news when I checked in this evening. It's just so unfair.

I can't give any advice about mva. I've only had an erpc on the NHS and frankly i was treated so badly I still cry about it sometimes, so I understand your reluctance.

Whatever you choose to do, I'm thinking of you x

Hi everyone, hope you don't mind me joining in and am hoping you will help me.

I'm on the joyous prednisilone... Am 7dpo and at the reoccurring clinic today they suggested since I had some from pregnancy/MC 5 I may as well start them today as I have had what I suspect to be implantation cramping.

I am a bloody mess :) in the past it's not hit me so hard, usually not affected by them and last time I was pregnant (this time is a guess and hope early will help) but the last hour I have cried and cried. It's even made me stupidly POAS.. I should have just peed on a fiver being 7dpo

Is this normal? Or a sign oh god I am going to be a mess by 14dpo

I am also so sorry to hear of the loses and for those going through it right now, it is so unfair and for you

Billy,

I'm so very sorry that you have to go through all of this again. It's utterly heartbreaking and I'm sending you my love.

I can give you a little advice on the MVA. I had an MvA with my first miscarriage which was done under local. You will most likely be given misoprostol to take three hours before the procedure to soften the cervix. The whole procedure from start to finish takes about 20 mins. It's not painful but it is uncomfortable. A bit like a smear test that lasts for 20 mins. The worst thing about it is that you are obviously awake and aware of everything that is going on. But the doctor and nurse that did mine were very good at just talking to me about anything to keep my mind focused on something else. It was a little painful when they injected the local anaestetic into the cervix but it was very brief. The recovery in a physical sense is quick and I left the hospital an hour later after I had passed some urine. There is minimal bleeding too. It is all done under ultrasound guidance so atleast you will be certain that it's done well.

With my second miscarriage I opted for the ERPC as I didn't want to be awake for it. I found this mentally easier but then they didn't use ultrasound guidance and left some tissue behind which was very upsetting.

Hope this is a little help for you. I'm sending you lots of strength and courage.

Xxxx

Welcome kittens

I've been taking the pred for two cycles....thankfully I haven't noticed anything much other than feeling full of energy - I'm like super woman on them the bad part for me is when I stop them - I find myself getting really irritable and angry for a day or so

Thinking of you Billy x

How are you doing today Billy? Have you had any time to think things through and decide how it's best to proceed? Thinking of you...

Karryk: have you have any issues with ovulation and your thyroid?
I've started monitoring ovulation this month using opk's (which I know don't really work as I have PCO's but I thought what the heck, until the basal thermometer arrive I might as well) and nothing yet. I also have a feeling I didn't ovulate at all last month either. And I'm on 125mcg of thyroxine which is pretty high so I'm worried this may be affecting ovulation. I think if it doesn't happen this month I will beg my GP to send me for a Progesterone 21 test....

Welcome KittensandKnitting, how long have you been on the pred?

Hugs and waves to everyone else

Hi Billy sending you my love and thoughts today. xxx We are here if you want to talk.xx

Hi everyone! Thank you for the welcome.

Again so sorry for anyone going through miscarriage it is so very difficult so I hope that you are being kind to yourselves and doing as well as you can!

I took prog sups last month after my BFP, sadly only for three days as quickly turned into a chemical.

This time I've taken since Tuesday as the reoccurring miscarriage clinic said it certainly would not harm, I am now 8/9dpo - they have made me so sleepy and tearful this time and I'm feeling so moody at times, my poor poor DP. Just don't feel myself at all!

There not quite sure why I keep miscarrying at the moment so it is a it won't harm so let's go for it type of scenario for me! There also going to put me on heparin (sp?) when I get my next BFP, which hopefully will be by Monday!

Very nervous and scared to get the BFP as every single time I ovulate I get pregnant (even at 38) but then sadly every single time I miscarry. I heard someone describe it as though the innocence of pregnancy had been lost which really resonates with me as that first time I just expected to have a baby in 9 months, it so difficult!

Billy I just read your post and such a sad dilemma you are faced with, I don't know how you are managing to face work.

I actually lost my job after a rather nasty miscarriage as I took nearly a month of work, in a way it's been good for me as the pressure of TTC/pregnancy/ miscarriage month in month out if just impossible! I really admire you and anyone who works whilst going through miscarriage. Just wanted to send for you

Hi ladies
Thank you all for your concern and kind messages!
I have to say I've felt absolutely terrible for a couple of days - like I wanted to die! Just cant believe it again and really feel like I have to accept my chances of being a mum are now so slim, after 3 years of trying so damn hard! It just strips another piece of me away each time that I don't know who I am anymore! I don't want to continue with this constant effort, pain and my life being on hold, but I also dont want to give up. So I feel totally stuck!!
But for now I have to decide what to do about this pregnancy and if I want to keep my options for trying again open then I need to have the testing done.
So my options are...

1. Go to Dr S for the mva = 2K price and have a 3 hour each way journey to Epsom. Also I find having the spectrum during a smear really painful, so the idea of this happening for 20 mins scares me. I'm worried I will freak out and they will have trouble preforming the process. Worried Ill find it really traumatic. But I could/would have sedation. Also DH cant be in the room with me to hold my hand.
2. Go to NHS and have d&c then courier products to Surrey for testing. Cost 365 pounds plus courier fee. Last time I had a general anaesthetic I had a bit of a bad experience and ended with a terrible cough for 5 months (Ive asthma so I bad cough for me is pretty debilitating). This hasn't happened wit previous G/As tho. Im also a bit worried about trusting them with the products and the courier process. Also last time I had my own room - which was great - but I might not be so lucky this time and the ward is not a pleasant place.
3. Go to my local private hospital. Cost 1670 pounds plus 365 pounds and courier fee for testing. Would be obviously much nicer! Gentler experience. And I think I would trust them a bit more with the products. But again so much money!! (we need a new car, new roof and new kitchen atm!!!) (but I have money saved for IVF and Dr S said there's no point in IVF for me as I get preg!!)(but if we continue to try the SO and intralipid programme costs nearly 1k a cycle!!) -Sorry Im rambling!!

My main motivation for doing any of these is to get the products tested otherwise I would probably let nature take its course. So it's important that I can trust the right products will be sent etc.

Any thoughts ladies I'd really appreciate it. I know everyone is different and every experience is different and I'm sure given a little time Ill come to a good conclusion.

I'm getting increasingly crampy so it may well happen naturally before next week anyway. Does anyone have experience of having testing on products that have passed naturally? Dr S said they'd get contaminated but when I asked Louise if I could get testing on them if they pass naturally before the op she said yes.

(Sorry for such a long, self centred message ladies. I'm at work so trying to type quickly and dont have time to go through posts and see how you all are. I hope you're all doing well tho.)

xxx