Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

It's been a while since I posted - glad everyone is doing well. I'm still on my weight loss kick, and it's slowly coming off. I'm really hopeful that I can get my BMI down towards the good range for the next time we do a FET.

I had a load of blood tests this morning to check for all the different autoimmune disorders, and karyotype testing too. I forgot to ask the dr how long they take to come back - the phlebotomist said the karyotype takes the longest, but didn't know how long. Has anyone else had that test done? I'm private, not NHS. Apparently the turn around for some of the tests is 2-3 hours, which is pretty amazing!

At the moment we're looking at FET in August I think, depending on the results of the tests of course. I'm going to try and book in with the consultant for the end of June, and then if we haven't got the results postponing it.

@KittyKatSmile How are you finding the clinic? I've been on some of the IVF threads where people are unhappy with their clinics and changing after a failed round, but that's never crossed my mind as I do like it!

@ginandtonicformeplease good to hear from you again. I quite like the clinic (I'm at zita west; not sure if you knew that). I've switched; used to be somewhere else but they didn't really do anything about NK cells etc. It's good to be in one place where they can (hopefully!) get me pregnant and keep me pregnant. The protocol is largely similar to Mr S's.

Good luck to you and well done on the healthy eating x

@ginandtonicformeplease I was told it takes 8 weeks for the karyotype test results. I don’t think there’s any rushing it as that’s probably how long it takes for them to “grow” what they need to or whatever they do.

Hi everyone

Hope you don’t me posting but I spent yesterday morning reading through the entire threat. It’s so interesting to hear everyone’s different stories and so great to hear the successes!

I have had 3 losses. 2 chemicals and one missed miscarriage found at 8 weeks. I had my results from Mr S last week which were all normal apart from testing positive for the mthfr gene. He’s put me on the high treatment plan anyway as I said I wanted to do everything possible. So that is extra folic acid, baby aspirin, all the vits, plus progesterone, prednisolone and thyroxine for slightly high thyroid. Then intralipids at 4 and 8 weeks. Has anyone else had success with the plan and normal results?

Also, slightly wary about the prednisolone and people saying it takes longer to conceive 😬

Good luck to everyone x

Hi hopeful. Can I ask how mr s asks you to take Gcsf? When does it start and how long for.
I had had 6 mc and then had my son worked on a similar plan and now trying for no 2 :)

Hey ladies, do you mind if I join?

I’ve been reading this thread for a little while now and finally built up the courage to post It’s great to see so many success stories as we all find ourselves on this rollercoaster of journey!

I’ve had 3 miscarriages, all between 6-7 weeks and we’ve never seen anything on a scan (always been told my HCG levels were low) - I don’t really know if that’s a blessing or a curse but at times it’s certainly felt like I’ve been imagining the whole thing

Maybe TMI but every time I’ve had a positive pregnancy test I’ve always had a period like bleed, at the exact time my period is due. Like the first time we ever fell, I only noticed something was different when the next month the ovulation test came up positive straight away and I was totally convinced I’d just had my period 10 days earlier. I don’t know if anyone has experienced anything similar? I must remember to bring it up with Mr S next time we see him to get his view on why/ is it normal

During the ridiculously long referral window to the recurrent miscarriage clinic on the NHS, we decided to book an appointment to see Mr S privately. I had all the blood tests done that he recommended and my husband had the sperm comet test done. Mr S started me on the high treatment plan of multivitamins, aspirin, pred & cyclogest.

I’m just about to finish month 2 of the treatment & we’re due to see Mr S later this month to get a refill on my meds. So far they seem to be going okay. I find falling asleep difficult and struggle to wake up for work, and my appetite is definitely bigger but no other major side effects.

Hi @Anatrina. So sorry to hear about your losses - have you started your treatment plan yet?

Hi @Wishing5tar sorry to hear about your losses too. What were your results from Mr S?

I haven’t started the plan yet as my results appointment with Mr S was a few days after ovulation and so now I have to wait a couple of weeks for next ovulation. I’m in such a quandary about when to start the pred. Have you been taking it from ovulation?

@Anatrina I had a normal amount of thyroid antibodies but the were more aggressive than they’re supposed to be. I also had a normal amount of NK cells but again the activation marker was higher than it’s supposed to be (I think that’s what my results mean anyway haha it’s so overwhelming when he goes through everything isn’t it)

Yeah I’ve been taking the pred since ovulation. I know people have mixed views on when to take it from but I like the fact that he’s taken over control of the situation and said do this, follow that etc. and it’s taken the thinking away from me if that makes sense?

@Anatrina I had a normal amount of thyroid antibodies but the were more aggressive than they’re supposed to be. I also had a normal amount of NK cells but again the activation marker was higher than it’s supposed to be (I think that’s what my results mean anyway haha it’s so overwhelming when he goes through everything isn’t it 🙈)

Yeah I’ve been taking the pred since ovulation. I know people have mixed views on when to take it from but I like the fact that he’s taken over control of the situation and said do this, follow that etc. and it’s taken the thinking away from me if that makes sense?

@Anatrina I had a normal amount of thyroid antibodies but the were more aggressive than they’re supposed to be. I also had a normal amount of NK cells but again the activation marker was higher than it’s supposed to be (I think that’s what my results mean anyway haha it’s so overwhelming when he goes through everything isn’t it 🙈)

Yeah I’ve been taking the pred since ovulation. I know people have mixed views on when to take it from but I like the fact that he’s taken over control of the situation and said do this, follow that etc. and it’s taken the thinking away from me if that makes sense?

@Anatrina sorry the post wouldn’t send and now it’s gone 3 times 🙈😂

@Wishing5tar haha no worries!
Yea I guess it makes no sense to pay the money for all the tests and then not do what he says!

Just seen the above posts. I would absolutely take the pred from ovulation as instructed. It’s the one thing that Mr S is adamant on and it’s one of the things that makes his treatment different to others who treat. He truly believes that this is where the difference is made, this early on (before implantation).
Good luck all xxxx

@Anatrina absolutely! We did lots of research before deciding that we wanted to see Mr S so putting my trust in his plan ☺️

@DaniMERL thank you & huge congratulations 😍 how far along are you now? Have you started weaning off the pred?

Negative test for me yesterday so this month wasn’t meant to be 😏 Enjoying a break from the meds & I’ll start a fresh next month 🤞🏽

How does everyone track ovulation? I usually use the cheapy sticks but I really don’t like dehydrating myself in the afternoon to test after work. I’ve seen a few adverts for the bracelets that you wear while asleep and didn’t know if anyone had any thoughts or had tried them?

Thank you @DaniMERL How are you getting on? Am I right in thinking that you previously didn’t take the pred from ovulation and suffered a loss? Did you find it took longer to conceive on the pred or not really?
Congratulations, I’m so pleased for you 😊

@wishing5tar sorry to hear about the negative but onwards and upwards for next month! Let us know what Mr S says when you see him.

I use the clear blue monitor to track ovulation which I find really good. I also use the cheapy sticks in the vital few days.

@Anatrina that sounds like me actually. 3 losses before the programme, (pregnant 3 times in 5 months), started taking the pred every month and then really struggled to get pregnant again (for around 7 months). I was also getting horrendous side effects from the pred withdrawal every month (headaches so bad that sometimes I couldn't go to work). Another doctor told me it could be the pred preventing me, so I stopped and got pregnant. I then lost that one and Mr S told me it was my fault. So yes, as Dani says, you should probably follow his protocol. I'm no longer with him, but following a similar protocol elsewhere (I'm on this journey alone so need assistance!)

Good luck x

Hi all,
Had our harmony results back last night and all good. Had a quick reassurance scan this morning as was still feeling so anxious and all is well, measuring 12+4.
Feeling slightly more relaxed and happy. It’s been a super stressful time.

I used to track my temps and record on Fertility Friend. I tended to ovulate at the same time each month so rather than stress over OPKs we would just DTD regularly in the week leading up to expected ovulation time and a bit after. Was a bit exhausting but I didn’t like to rely on only doing it once or twice.
I have heard the clearblue tests are very good but I never invested.
Take care all x

The blood results from the tests I went for last weekend have started coming in. It seems I have low free thyroid, and I've been sent a prescription for L-Thyroxine. I've never actually heard of this, and I'm a bit puzzled as the regular thyroid test was normal. Several months ago the GP did thyroid tests and said everything was normal - is this a different type of thyroid test that the GP doesn't test for? This is all so confusing 🙈

@ginandtonicformeplease I've got that as well and was pretty cross with Mr S as this seems to have up since I've been in his care. Anyway. I took the same drugs you've been prescribed and repeated the test around 2-3weeks later and it was within the normal range and I was fine to proceed with my IVF cycle.

Hope you're well.

@Cream123 - I m doing a frozen embryo transfer, Mr.S protocol for me says to take G-CSF 5 days before my transfer and then every 3 days until 10weeks if pregnancy confirmed. Are u going to take G-CSF as well?
@ginandtonicformeplease - Normally GP's consider thyroid as normal till a higher range. But IVF consultants and Mr.S would like it to be in a very low range (TSH between 1 and 2.5). Thats y u might have been prescribed with levothyroxine.
@DaniMERL - Glad to hear all s well.u can relax a bit now.

Hi hopeful.
Yes I’m doing a frozen cycle too! I’m under dr gorgy - and I’m doing gcsf from day 5 oestrogen . How far r u in cycle ? Sounds like our hx r similar!

Thank you @KittyKatSmile that’s really helpful. All the best for your ivf.

So.... first day back on the pred yesterday and I'm wide awake at 4am...! I don't even feel tired, feel like I should maybe get up and go for a run?! Shame I'm already up to date on Love Island....! Note to self to take tomorrow's dose a lot earlier. Strange that I've never had this side effect before and think I'm actually on a lower dose this time....!

@ginandtonicformeplease it sounds like they have tested the hormone that your thyroid makes (T4) instead of the hormone your body makes when it wants more T4 (TSH). It is common practice to test TSH as it easier to spot fluctuations, but T4 is actually what the thyroid produces (which then gets converted to T3 just to add to the confusion!)🤓

I haven't posted in a while, I've been a bit low, my cycles randomly dropped to 24 days after the last CP which really freaked me out. But I went to MrS yesterday for the results of the first part of my treatment plan - humira for TNF cells, and it's been a big success 👍 So onto step 2 and TTC with pred and intras. Incidentally I track O by body temp and although there wasn't a noticeable leap it has climbed up and stayed up so I am taking the first pred today! See you at 4am tomorrow @KittyKatSmile 😂

@DaniMERL such great news after a difficult journey, I really hope you can start to enjoy this now ❤️

@Chickjen I am so happy to see you back here lovely. Should we sign up to some sort of crossword puzzle for tomorrow morning? I felt very lonely .

I'm having my first embryo put back in sometime in the next few days and then going off on holiday with my mum (I know you were all on tenterhooks to see if it would go ahead!) so that should make the tww a little easier