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

Congratulations @KittyKatSmile. Wonderful news... hope u and baby are doing well. Xx

Hi ladies,

I would like to get ALOT of your opinions so hoping you will all reply. I just don't know what to do.

I've been trying for years to have a baby now, I had testing with DR S and had been on his treatment for the last 6 months with no luck.

I was meant to have my follow up meeting with him on the 1st April because I wasn't happy with the plan as I convinced myself I wasn't falling pregnant due to the medication I was on. I've now called and they have advised to STOP trying to conceive!!!

I get it, I really do.. there is more important things going on in the world but how long do we stop for? What if this goes on for 12-18 months?

I've had 3 miscarriages and 1 ectopic. I was also having testing under the NHS clinic however I got my first lot of bloods back and they was all negative and normal!

So basically every test I've had back are normal apart from some from DR S for boarderline high NK activity, however when I went St marys hosptial they said they don't agree with him anyways.

What's everyone else doing? Are you going to stop? Or carry on ttc?

Thank you!!

Hi All,

A bfn for me this morning. Mixed emotions - relived that I won't be filled with anxiety but sad too as it's another month gone. At least if I had a bfp I would have been able to put my feet up and chill.

Not sure what to do next, I've ordered my next pot of meds for super ovulation and will call clinic on Monday.

@readmycards I did speak to the clinic a few days ago and they said it was my choice whether to stop or continue, the nurse said they are advising to stop as there isn't enough research to show how this virus will affect pregnancy however women will get pregnant probably even more so know while they are housebound! She said the clinic will continue to support either way.

I had initially decided that I was going to take a break however today I've decided I'll continue as who knows how many more bfn's I'm going to go through...and if it were a bfp then like I said at least there's no pressure of going out to work and I can rest as that's what I don't do often. I haven't actually discussed this with my husband yet thought I'd come on here first 🙈

Also I'm on my 5th cycle of super ovulation so after this will decided whether I want to go down the ivf route with Dr S.

It's a tough time for all, those who are pregnant have that added anxiety - pls stay safe and indoors. And those with bfn are uncertain about the future. Good luck to all xx

*relieved

@readmycards just out of interest what plan has he put you on? Xx

Hi @readmycards, I feel the same as you, finally got my results in february for High NK cells after 5 miscarriages and an ectopic. I cant believe we've paid all this money and have to stop, I feel like everything is against me. And yes people are losing family members and have much greater problems but this means so much to me and I am about to turn 41 so the clock is ticking. Its beyond frustrating!! I had thought maybe we could keep ttc and start the medication if I was to fall pregnant but could that even work? At least I wouldnt constantly be on the pred and at greater risk of catching coronavirus as I know it weakens your immune system? If it's another 18 months of this, I might aswell just give up? so confused what to do aswell! xx

Hey @readmycards - I know exactly how you feel. I called the clinic this week & was told the same. I initially felt really worried as I was about to start the pred again & was a till travelling in and out to Central London every day for work.

However, from Monday I’ve been told to work from home until further notice along with the rest of my office and I’m feeling more secure now that I can be holed up at home. Totally appreciate that working at home isn’t possible for everyone.

My husband and I have talked through it all a million times and decided to keep going. We don’t feel like we have the time to take a break when the Coronavirus situation could be indefinite.

I have definitely had a stressful week weighing it all up but feel I have made my peace with going ahead now.

I know what you mean @Luckyducky2 - I think some people seem to manage to take the meds from BFP and it turns out ok. I think my NK cells are too high and too aggressive to be able to do it that way - although I love the idea of not being so worried about being on the dreaded pred at this extremely weird time. Xx

I’ve said this so many times on this thread but for me I have to take the pred from ovulation or I will miscarry. Found out the hard way. Mr S prescribes it from ovulation for a reason and I wouldn’t wish my experience on anyone. It’s one thing having mcs that you can’t control, but I genuinely feel like my last one was completely my fault and it’s been much much harder to get over. Not sure I ever will tbh. It’s also meant that this pregnancy so far I’ve been completely destroyed with anxiety. So all I can say @Luckyducky2 is I really really don’t recommend it.

Oh god @HarrietM87 now I am so confused! I've got a week or two to decide before I need to start pred again, who knows where we'll all be at that stage (with this virus) so I may completely change my mind all over again. The thought of another miscarriage is just way too draining at this time!!

@Crystal2020 that's great you've decided to soldier on - I think if I was a bit closer to London I would do the same, I guess I'm just finding all this a bit difficult with being so far away? Xx

@Lemurville do you know what your TSH level was? There is the 'normal' range and then there is the TTC range. Ideally it should be 2 or below. I do think thyroid is definitely worth pursuing and if your gp will refer you to an endocrine consultant then jump at it. I was trying without conceiving for around 9 months when I had my thyroid tested, I had the opposite problem though, high TSH but normal T4, and the very first month of treatment I conceived (admittedly it ended in MC but I did not know about the second issue of NK cells at that time)

@readmycards I would base my decision on how well you would be able to isolate yourself. If you can keep your risk minimal personally I would probably carry on TTC, I say that as I found stopping very hard mentally.

I second @HarrietM87, the earlier you miscarry the more important it is to take pred from ovulation. As MrS described it to me ' your NK cells are not sat around waiting for you to get a BFP' they will be working right from conception.

Hi all, havent commented on here recently, but I hope you are all doing well given the current circumstances.

I had booked in to have my first appt with Dr S on 1st April, but am thinking of delaying it a bit due to what is going on.

My GP is referring me to an endocrinologist as well so think I may go with that first as well, just so that I am not paying out for these tears at the uncertain time we are in economically.

I am just going through a chemical pregnancy and this is how my third pregnancy since Aug 2019 - 1 MMC and 2 CP.

I have this niggling feeling that I too have the high NK cells, but I do also have hashimotos.

Sorry for rambling xx

How is everyone doing?

I’m struggling a bit with the coronavirus stuff and feeling quite anxious. I have a scan with Mr S tomorrow & I should be 9+6 but I’m petrified it will have all gone wrong. My symptoms have reduced too the last 2 days which is worrying me. Sorry, a bit too much about me but I know you all understand the anxiety. I had a scan at epu at 8+2 & all fine but I’m so scared.

Xx

Hi everyone. @ceebee21 so sorry to hear you’re having another chemical. I’ve said this before but even if you do have NK issues you absolutely must get your thyroid sorted or you won’t be able to have a successful pregnancy. Mr S will say the same and won’t let you go ahead until TSH is controlled. He can run all the thyroid checks for you but it’s much more expensive than through the NHS (obvs) so my advice is to sort that and then go to him when you’ve got your results. Fingers crossed that’s all you’ll need 🤞🏻. Also maybe wait a few weeks before being tested because I always find pregnancy sends my thyroid levels totally mad. I’ve just had to increase my dose from 150 to 175 and then 200 as my TSH was just going up and up. Hoping it’s stable now but don’t know when I’ll have the chance to have it tested next.

@mezgaski good luck for your scan today! I’m certain all will be well. I’ve reluctantly booked in for one at the clinic next week when I’ll be 8 weeks...really don’t know how I’m even going to get there.

@HarrietM87 I am due my blood test shortly following my increase to 125mcg every day, so will see what is going on there! How long did it take for you to get your thyroid stabilized?

Who is now monitoring it in pregnancy?

Thanks

@ceebee21 I’ve been stable on 150mcg since I was about 18 (diagnosed at 16 and increased gradually to that), but each mc caused my TSH to increase massively, then it went back to normal again with time without changing my dose. In my successful pregnancy I only needed to go to 175mcg in the first trimester and stayed on that until after the birth. This time I went straight to 175 but my TSH was still 3.4 so went up again to 200. I request the tests through my GP and once I’m booked in at the hospital I’ll get them to do it along with the other regular bloods, which is what I did last time. You need to wait 3-4 weeks between tests to capture the differences so I was tested at 5 weeks and will try have another at 9 weeks. Good luck!

Hi ladies, in all my worry about not being able to get a groceries delivery, it didn’t dawn on me at all that people would also be stockpiling vitamins. I can’t get anything I need online today & can’t get to the shops cos of working from home. So just a reminder to stock up on your multivitamins, vitamin d etc while you still can...eeeek xx

@opalescentblue just tagging you so you see this thread

Hi guys, been a bit quiet trying to get over this latest nightmare, had my family for a few days which helped and in some slightly better news my HCG came back and it's not ectopic - phew!!! We also went to see a fertility consultant who basically said IVF with PGS testing for an absolutely eye-watering amount of cash. But literally as we were having the appointment the govt announced all fertility treatments are cancelled for the time being. So now we're in the same situation as a few of you, should we continue and do the pred from ovulation? I've got it or at least enough for a couple of weeks, or should we do it from BFP or just not bother!!! AHHHHHHH! It's so hard, I think I've basically got 4 or 5 days to decide. My other half is leaning towards not bothering as he's worried if I miscarry I'd need to go to hospital (I've had 2 d&c's), but my heart is kind of saying keep going and try the pred from ovulation - although I worry he's not washing his hands as much as I would like... mine are basically red raw and his look like a baby's bottom! So what does that tell you...hmm!

@ceebee21 I'm really sorry to hear about your chemical, it's such a kick in the teeth, I hope you're taking care of yourself.
@Eeviee and @mezgaski I hope your scans/upcoming scans have gone well
And all the pregnant ladies I hope the anxiety is not a total nightmare.

Keep strong people!

Has anyone else have the text from the clinic? There's an update on how people should change their treatment regimen in pregnancy and pre-pregnancy.

@countrygirl220 I would follow the new protocol to the letter with everything going on. And @HarrietM87 I think what you said made a lot of sense. That idea the NK cells are not waiting for you to get a BFP really stuck with me.

Not sure how I feel about it. But I'm going to TTC regardless so they may as well give me the meds. I'll sign a waiver or whatever. Me and my hubby could REALLY get down to it in Lockdown. 😆🥰😜 let's catch that egg!

I should also factor in that I bet it might not be feeling quite so good for everyone else. How is everyone else doing? Sending love ladies ❤❤X

Ladies I just saw on the CRP website they are advising to wean down to 15mg pred or 200mg hydroxy.

@Chickjen I just saw that, it worries me but just have to trust that it’s enough...

@Chickjen yes I just saw that. And a poster on another thread was talking about it yesterday. I’m really panicked tbh - I don’t want to do it as have no faith that I wouldn’t miscarry again. I don’t know what to do.

@HarrietM87 @Eeviee I'm sure Mr S will not be saying this lightly and will have really weighed up the pros and cons. Just an idea (but obviously I am not medically trained like Mr S) others who used zita west only took 20mg throughout. I wonder as a compromise to reduce to 20mg but be SUPER careful and go OTT on isolatation. ❤️

@KtAgs I was literally just thinking right let's be super careful and go for it on the pred from ovulation when I got the text from the clinic. Ahh this is really hard when I was at the fertility place the other day I saw 7 follicles which is more than I've had in previous months so I was thinking we should defo get on with it this month - and you're right lockdown does provide those opportunities, but now I'm totally doubting myself.

@HarrietM87 @Eeviee I also think as you've been taking it a while hopefully it will be in your system perhaps? And also the miscarriage risk goes down by week so hopefully you're now both over the most critical weeks? But defo go full lockdown and wipe all your surfaces constantly. Sending positive vibes!

Hi, not been on for awhile. I was havubg tests at the Coventry implantation clinic - my second biopsy on Friday was cancelled sadly. I just got my first set of results back and my uterine nk cells were normal. Feeling flat - I mean that's good but it also means we're no closer to having an answer. And as thryvr cancelled the next one for the foreseeable, we're in limbo.

I had my blood test yesterday to check thyroid function. My recurrent mc consultant wanted me to continue on them until I'm pregnant but I suspect if my levels are under 3 my GP will take me off the levothyroxine.

Dh doesn't want to ttc at the moment - neither do I whilst the pandemic is peaking. But the thought of not trying or having any hope is really difficult. But I want to revisit this decision in the summer, whereas he wants me to have the second biopsy but we don't know how long this will go on for and I'm not sure how long I can be in this uncertainty.

@ceebee21 I am so sorry to hear this ❤️❤️ sending you lots of love xx

I'm having a really bad eczema flare up, so am surprised my tests are all normal. Trying hard not to feel despair but I'm struggling to accept 3 pregnancies ended due to bad luck :(