Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

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 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.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

That's really shit no one will offer you karotype testing. And that you understandbly feel so out at sea @FrannyAnny82. It just compounds your suffering.

Have you spoken to Arc? A friend of mine sadly had a TFMR and she found them so helpful. www.arc-uk.org/ More than the hospitals in fact.

And I got my karotype testing through Guys at Vialab. It could be worth looking on their website as they might take national referrals. FWIW we got ours because the chromosomal abnormality of our 2nd loss was quite rare (duplication of the arm of 22) and the lab suggest we get tested.

Even though you're going through this uniquely awful experience, please do keep talking to us, and posting. As Mezgaski said, we're here. Thinking of you. Katy x

Thank you ❤️ I feel bad for slagging off the clinic because Dr S and the nurses were so kind to me. It's just sometimes this all feels so overwhelming. We really have to be our own advocates.

I'm having the nuchal on Wednesday at the clinic then I've managed to get an NHS one the following day and hopefully a cvs - more just to get into the system than anything. The harmony is so reliable that if anything shows up on the scan then we've agreed to accept that as being a definite.

We're also both agreed that we can't keep the poor little baby. There's just no way of knowing how disabled she would be and I'm 37, husband is 41 so we won't always be around to look after her.

Thank you for listening and being so kind. I honestly don't know what I would do without this group xxxx

I am so sorry @FrannyAnny82 its incredibly stressful and absolutely heartbreaking. Thinking of you 💜 I hope you get some answers this week xx

@FrannyAnny82 I’m so so sorry to hear this. It’s so unfair. Please don’t give up though - the fact you’ve got this far shows that the pred works for you and it’s just a horrible coincidence that this poor little one wasn’t to be. It doesn’t mean that you’re incapable of making chromosomally normal babies - I’d assume that your previous mcs were due to NK issues that the pred would solve and your next pregnancy will be fine.

My grandma had 6 children. The third had downs and was born when she was 26. Sometimes these things happen and it’s just awful horrible luck. Keeping everything crossed for you this week and glad you’ve managed to get an NHS appointment xxx

Meant to say the last was born when she was 40 and no issues whatsoever!

@FrannyAnny82 I'm so sorry for what you're going through, it's just so heartbreaking and desperately unfair. Just on the karyotyping we had it done after our 4th loss, we had to pay for it but Bupa gave me the referral. We went to the Doctors Laboratory on Harley St. for the tests within 48hrs, I don't know whether that is also an option for you perhaps if you are struggling to find someone to do it. Sending you lots of love x

@FrannyAnny82 I'm so sorry you're going through this. Are you still under a nhs consultant? Only as my nhs consultant did the karyotype tests for me last year after my 3rd miscarriage. The nurses F the EPU said it was impossible for him to get the test done as the nhs just don't have the funding for it however my 3rd miscarriage was sent off for testing and came back inconclusive so he did the karyotype bloods for both me and OH. It took about 3 months for the results to come back.
I'm surprised Dr S doesn't do them? In fact he was surprised I'd had them done on the nhs. It's worth a try speaking to your nhs consultant.
It's an awful time and this current situation where we can't be around friends and family makes matter worse.

Ladies, I started my Gonal f injections 2 days ago and had the a very sudden sharp pain in my left nipple. A tiny bit of discharge too. It's worried me sick. I've just said to hubby I don't know If I want to keep pumping drugs into my body - I don't know if I want to carry on with it all. Been one of those days. Just feel like it's a constant battle. I'm going to call the clinic tomorrow as I need to arrange the follicle tracking scan too.

@FrannyAnny82 I'm so sad to hear what you are going through. It must be truly heartbreaking. We are all hear to listen and help in whatever way we can. You are not alone in this journey. Sending you a virtual hug x x

@frannyAnnie82 - I'm beyond sorry, there are no words of comfort at this time but in a bid to just be there and offer some support, like all of the other amazing ladies on here I just want to reiterate, you are not alone. Please do rant, scream cry and vent on here and we will do our best to offer what ever we can by way of support. You feel like the unluckiest person alive right now, I totally get that, and why wouldn't you but please don't give up hope. One step at a time is all you can do xx

Has anyone suffered really badly with pred withdrawal? I don’t remember it being an issue before but since I went down to 10mg I’ve been feeling horrendous - I’ve had a splitting headache for 3 days, exhaustion and nausea. I’m sure it’s the pred rather than pregnancy as my other symptoms have been easing up.

@FrannyAnny82 I’m thinking of you.
@Countrygirl220 how are you doing?
@opalescentblue how are you?

@HoldingOn2Hope I totally get you, you wouldn't be human if you didn't have those feelings about not being able to carry on. I've had a lot of days/hours like that and just try and let myself have those feelings and then feel a bit better/stronger after a sleep to just keep going. But the weird side effects definitely don't help, I don't know about those injections but hope the side effects are easing!

@HarrietM87 I'm ok, I've had a bit of an anxious w/e had a bit of brown discharge which has never been a good sign before so have been a bit worried. It seems to be coming and going but I'm still nervous. I have, however, jumped back onto the pred but I had a long break so we'll have to see how that pans out. I'm now 6+2 so this morning I plucked up the courage to ring about a scan, but waiting to hear. I've never had a good scan so am fully petrified and just wonder whether I should even bother and just see what nature does? I'm afraid I don't really know about the pred withdrawal, I don't think I've ever taken it for long enough to have a comedown like that. But it doesn't sound pleasant, hope you're ok!

@FrannyAnny82 thinking of you as well

Hope everyone else is doing ok x

@FrannyAnny82 it's so incredibly cruel; I'm so sorry you're having to go through this ordeal. And I can totally imagine that you feel alone. We are here for you xx

@Countrygirl220 girl, are you taking the progesterone? Keeping fingers crossed for you. X

Thank you @Eeviee yes, I've been taking the progesterone right from ovulation so haven't had a break on that. I heard from the doctor and they're saying they'd prefer to do a scan next week, so another week of waiting... coupled with the fact I literally hold my breath every time I go to the loo it's going to be a long week....ahhhh!!! How are you doing? Have you had any news on the results of the testing and did you decide whether to get the Hydroxy?x

@HarrietM87 yes I’ve had terrible withdrawals from the pred both with my daughter & this time, although more so when I stop it x

@Countrygirl220 that's good; I only asked as have read somewhere that low progesterone can cause spotting in early pregnancy but if you're taking cyclogest then you'll be covered. It's so nerve wracking, keeping thing crossed for you.
I still don't have the genetics results back, I'll speak to Dr Shehata once I do but I'm not sure what we're going to do. Me and my partner haven't even spoken about it, it's the elephant in the room...
I've been spending hours on the internet looking into ivf options etc.. I'm wondering if it'd be worth a try. I'm willing to give the hydroxy a try, I'd try anything. Hope this weeks flies by for you x

I went to see a new gynaecologist yesterday. He went through everything at top speed but he answered most of my questions. He thinks 60mg of prednisone is ridiculous and that my other gynaecologist must have made a mistake on the prescription. So that's reassuring.

He's pulled strings with the internal medicine specialist to try and get my appointment in July moved forward, so hopefully we will soon find out whether I do actually have high NK cells or not, and in the meantime I'm taking nothing but vitamins. So I guess everything is on hold for the time being, but hopefully we will be able to start trying again sooner than anticipated. The clinic that does the endometrial biopsy is closed at the moment but if I can see the other doctor sooner rather than later then hopefully I can get booked in as soon as they reopen. It'll be 500 euro out of pocket for the biopsy, apparently (ouch!) but I guess that's how it goes.

And he said he didn't really see the point in us doing IVF in France, since I can get pregnant naturally and so the only advantage would be if we could implant a PGS tested embryo, and for that we'd have to go abroad.

Tomorrow I have another appointment with an IVF specialist to get her views, and another beta to see if my HCG is back to zero yet.

Hi everyone, long time lurker, would like to join if I may?

A little about me: me 35, hubs 38. I have PCOS/fibroids (open myomectomy 2019). 2 previous chemicals approx. 5-6 years ago, ttc 9 years in total, nothing naturally since although I stopped testing due to shear devastation at seeing one line. Had my first FET with a PGS normal embryo this February but miscarried at 7 weeks. Spent two days in hospital crying whilst having a medicated m/c. Very dark time after. My ivf consultant is at a loss of what has happened, but refusing to prescribe anything extra for my next round (still have 2 on ice) saying that all of the immunes are against NHS/HFEA policies. Also, I'm supposed to be seen at RMC but the waiting time now might be a year due to backlog and covid 19! I really can't wait that long.

We are now thinking of seeing someone privately to complement our next nhs funded next try. Dr Shehata seems to be the preferred clinician here. I'm open to suggestions of other specialists. But I think I am leaning towards seeing Dr S.

Hi @Jorun I am very sorry for your loss. I've been ttc for 2.5 years and had my third loss in February this year - that was a chemical but my other 2 were missed miscarriages.

I'm doing the uterine nk cell biopsy testing with Coventry, Professor Quenby and Professor Brosens. I had my first biopsy and got normal results, my second was cancelled on the day. Impatiently waiting for the clinic to reopen. Someone I know had a negative first test and a positive second biopsy, so no certainty.

My rmc blood results were OK, but if and when I next conceive I'll take aspirin.

Desperately seeking answers but not got very far at the moment. Trying to see ruling things out as a positive.

We've decided to not prevent but not actively try, preventing completely sent me a little crazy so this is my compromise with dh.

Hi @Jorun, welcome to the thread and sorry for your loss.

I would definitely push forward with private testing and treatment if you can. Totally understand why you don't want to take the risk with your frozen embryos if there may be another problem causing you to miscarry. Have you had any testing done at all to determine what might have caused your miscarriages?

I'm assuming that if you had IVF you were taking progesterone supplements so it's unlikely to have been low progesterone.

Have you had your thyroid hormones and antibodies checked? That's one of the first things they would normally look at and you might be able to get your GP to prescribe those tests.

I'm not a doctor but I assume genetic karyotyping wouldn't be particularly useful in your case, as you're planning to use PGS tested normal embryos, so even if you or your husband did have a translocation the frozen embryos you have are normal.

I think you should be looking at thyroid issues, clotting issues, MTHFR mutation and auto-immune issues. You probably won't be able to have the testing for auto-immune issues without going privately to a specialist such as Mr Shehata, but an understanding GP might be willing to prescribe you blood tests for the other common issues, especially if you provide a list of the things you want to be tested for.

If not, you can order some blood tests privately. I think Medichecks will do a full thyroid panel for £100 or so, for example.

Good point about thyroid checks @peperethecat. I'm on levothyroxine, my last thyroid test was 3.06. I've not had a pregnancy since starting this, so part of me wonders if this might be a factor, even though my GP thinks my levels are fine - he reluctantly has done my repeat prescription.

@VenusStarr your TSH should ideally be under 2.5 to conceive (though I doubt a level of 3 would prevent conception). The normal range outside of pregnancy/ttc is up to 3.5/4 depending, which is probs why your GP thinks it’s fine. What dose are you on now? You could show your GP the NICE guidelines/British thyroid foundation advice which refers to the 2.5 limit. You might need to increase by 25mg every day or alternate days.

@VenusStarr as @HarrietM87 said that thyroid levels should be below 2.5
I've had under active thyroid for 18 years and although I've had 3 pregnancies all resulted in mc. Dr S or nhs consultant don't think it's thyroid related as my thyroid as been under control.

@Jorun so sorry to hear about your recent loss. We are all here to support one another. Dr S has been great although I'm still chasing my rainbow 🌈 I asked at my last appt that if I chose to take the nhs funded ivf would he support me and he said they would. Although with the nhs clinics on hold I doubt I'll get nhs ivf anytime soon.
I hope you find some answers if you do decide to make an appt with Dr S. I put it off for months but felt relieved once I did see him.

Just to add to what @HoldingOn2Hope said, I’m in a similar position - was diagnosed with hashimotos at 16, so 17 years ago now! My thyroid has always been well-controlled as I’m really on top of it and I don’t think it was a direct cause of my mcs. However I do think there is a link as obviously it’s an autoimmune disease so my immune system is prone to behaving inappropriately, and I’ve also got extremely high levels of anti-thyroid antibodies - I think there is some suggestion they may have a similar effect to NK cells, though Mr S has never looked into this.

As against that, there is a strong history of hashimotos in my family and no one had any issues with mcs so maybe I’m just unlucky!

@VenusStarr, I'm sorry to hear about yours! I looked into doing the uNK biopsy with Quenby/Brosens but was put off having to go all the way to Coventy from Manchester. No direct trains/didn't fancy driving..London just seemed a lot easier, so looking at consultants there. Plus the treatment that they offer seem to be pred if you're found to have an elevated result. By the way, she is doing an interesting trial at the moment (more info here: www.nihr.ac.uk/news/new-trial-could-benefit-half-of-women-with-recurrent-miscarriage/22110), so that's something to look at.

@peperethecat, I am going nuts having to wait, but also incredibly frustrated with my IVF consultant, she is very reluctant to prescribe anything extra, because it's my NHS cycle. She said should do prescribe things, even empirically if I was a private patient! I was on progesterone (800mg a day). I had my TFTs checked as well, THS came back 3.1 so she has put me on Levothyroxine for my first FET, and as others have mentioned, my GP has fobbed me off because it is within NHS normal ranges. After my m/c, she wanted my GP to do thyroid antibodies test, but GP refused and only did THS and T4. GP has also done a few other basic clotting tests all of which came back normal.
I don't know much about karyotyping as never looked into it. PGS is not full proof as it doesn't rule out mosaicism in the embryo, that's why we were only given 60% of it working. Yet it cost us a lot of money!

@HoldingOn2Hope, thanks! That's good to know. And really hope we will reach our goals one day (soon, preferably!)