Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

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 immune issues, 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.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1 @Hippo20*

[peperethecat]

Ah, I wouldn't worry then!

[KtAgs]

Yes so useful @HoldingOn2Hope! I just used ICs, temping and CM before and turns out they were off compared to the monitor.

Are you ok after the intralipids?? Sounds so stressful. I'm a clinical psychologist so I know how hard blood related fainting is as I treated it a lot. Our bodies are truly amazing but must be a little frustrating. Well done you on your first go. You should definitely treat yourself lovely.

I think the time between the first positive test and first scan is so hard so be kind to yourself. Anything you can do to distract and stay away from Dr Google (although I confess i am a very regular patient of it 😂). Hope everyone is able to enjoy the sunshine. Xx

[Jorun]

Hi guys! How is everybody?
I made a trek to London for bloods yesterday on my day off. The phlebotomist took 20+ bottles of blood. Thought I'll be fainting, but it was really painless. Felt very nauseous on both journeys there and back (4+ hours of feeling sick). I really hope I don't need to make many of those.

I'm having my covid antibody test delivered to me, will have to send it back by post, anyone else had that?

[peperethecat]

Why are you all having Covid antibody tests? To check whether it's safe to take the medication?

I can get one for about 40 euro, debating whether or not to do it.

[Sophfr17]

Hello all, i think this thread is very interesting!
Despite a pregnancy termination at 14 weeks (surgery), 1 miscarriage at 6w, 1 missed miscarriage at 9w (surgery) and 1 more miscarriage at 6w, all of that in the last 12 months, i have been neglected by the doctors... Consequently, i went to Paris to have some tests done, and some abnormalities came back: high TPO antibodies, high free T4 and high TSH (doesn't make sense, both cant be high at the same time). I have been taking levo 25ug for the past 15 years.
With such results, Doctor here decided to finally investigate deeply. I went yesterday to UCLH for blood tests, and should get results in 2 weeks (6 weeks for our karyotypes).
I hope he will decide to give me some prophylactic treatments (if all comes back normal), such as aspirin, heparin and progesterone.
Feels good to read other experiences, as it can give hope, and provide idea on some other analyses to be done.
Take care all!

[HoldingOn2Hope]

@KtAgs Ah finally someone who understands 😬 I've had lots of blood tests as was diagnosed with under active thyroid 20 yrs ago which was all over the place so for me it was almost 6 weekly bloods - although my meds weren't changed until every 3 months.
And then obvs with the pregnancies,mc's and investigation there was lots more but can't seem to get over it each time I go for bloods. Surprisingly when I had all the bloods done at the clinic I was okay, but today I just saw blood all over my arm and dressing so that was it for! 😣

I felt okay after the intralipids, I did feel really hot though I know it's a very warm day but I still don't like the AC on in the car and today it was on full, even the DH thought it was weird!

I don't really have any symptoms but it's still early and nurse said the pred masks them too.

The next few weeks will be hard I just have to focus on good things and keep busy.

[Eeviee]

@HoldingOn2 Hope ah poor you, my little sister is the same, mention blood and she faints poor thing. When I was last at the clinic for intralipids there was another girl there feeling faint, felt so sorry for her. Glad it's over and done with.
@Jorun sorry to hear you felt so sick but hopefully you'll get some answers now.
@Sophfr17 sounds as if you've had a tough journey, that's awful you've been neglected. Do you have a good Gp, can you afford to go private for tests?

[Sophfr17]

Hi Eeviee!
GPs from my practice are the worst, they messed up with my referral 4 times. And when i managed to have some blood tests prescribed, the phlebotomy service affiliated to my practice forgot twice do so some analysis and just threw my blood away. So i had to go back again. One GP even told me to double up my levothyroxin dose (50) because of the TPO antibodies, which was odd. A few days later another GP from the same practice called to tell me to go back to my normal dose (25), because her colleague had made a huge mistake. Incompetent.
I finally managed to be taken care of my a specialist at UCLH. I went yesterday for all the blood tests, but i could see on the screen that some tests were missing. I had to run in 4 different sevices in the hospital to finally manage to talk to someone who called the Dr. He eventually called the phlebotomy service to tell them to add the missing tests. I am exhausted.
Maybe I am neglected because I am not English.

[Countrygirl220]

@Eeviee thanks for getting us going, hope you are feeling a little better?

Welcome @Doughnut100 & @Wireless77 & @Sophfr17 sorry to hear about your losses, it's such a painful journey, hopefully this group will be of comfort to you

@HoldingOn2Hope glad the intralipids were ok, just hang in there these next couple of weeks, it's so agonizing but you're doing all you can!

@Jorun that does not sound nice, but hopefully now you'll get some answers, so you're moving forward

Hope everyone else is ok and managing to enjoy some of this lovely sunshine x

[Wishing5tar]

@HoldingOn2Hope I’m pleased the Intralipids were okay!

Today is CD1 for me so I can start the letrozole tomorrow or Friday! Dr S would like to scan me between day 11-13 but I have a slight problem in that day 11 and 12 fall on a weekend so it would either have to be the Friday (CD10) or Monday (CD13).
I ovulate anywhere between CD12-15 so I’m worried if I wait until the Monday, I could have already ovulated 🤦🏻‍♀️ Do you ladies think it’s better to go the Friday (& potentially run the risk of needing to go back because I’m not ready yet) or the Monday (and run the risk of already ovulating)? Would starting the tablets on day 3 push my ovulation back slightly or would it not make a difference?

Sorry for all the questions 🙈 typical that my first superO cycle wouldn’t be straight forward haha x

[peperethecat]

What is the purpose of the scan? Are you going to trigger ovulation?

[HoldingOn2Hope]

@Wishing5tar this is my dilemma every cycle without fail! Days 10-12 always fall on weekend.
I've been on day 9 and found it's too early to see follicle growth and get given the trigger to take home. This time I was quite good to just go on Day 9 however nurse called me and said Dr S would prefer if you came on day 12 as looking at previous scans I won't ovulate til day 14-15 and he was right.
Why don't you ring the clinic and ask what your previous scans have shown? And do you track ovulation? I know they tell us not to but I always do for my own piece of mind. I thought if it like this, in the worst case scenario I won't be able to take the trigger and will ovulate naturally. I know it's difficult as I had this issue every month.

[Crystal2020]

Hi @Wishing5tar, on my 1st SO cycle I ended up having to go for the scan on day 9 because of the way the days fell. But just as well I did because I was ready and needed to do the trigger shot that night. Then this cycle I went on day 8 based on the previous time but ended up having to go back and get re-scanned and triggered a few days later (day 11). So it can be a bit of a lottery but hopefully it settles in to a bit of a groove after a couple of goes and becomes easier to predict.

Well done today @HoldingOn2Hope!

Welcome @Sophfr17. It sounds like you’ve been through such a lot. Hopefully this group helps you like it’s helped the rest of us. X

[Wishing5tar]

@peperethecat the scan is to see how the follicles are growing and determine when to trigger.

@HoldingOn2Hope nothing is ever easy is it! 😂 I haven’t had any previous scans at the clinic so I’m not sure what they’d say - I’ll ring and ask though. I do track ovulation and it usually falls between CD12-15 with the odd outlier at day 11 and 18 but that hasn’t been for a while. You’re right though, worst case scenario I will have already ovulated if I wait until CD13 and can try anyway (do people BD in the run up to scan/trigger just incase?) and it means I hopefully wouldn’t need another trip to the clinic and the risk it currently poses.

[peperethecat]

Why are you having the trigger shot if you think you will ovulate on your own? Is it part of the SO protocol?

[HarrietM87]

Ah I didn’t see this thread and thought the other had gone quiet!

Hi and welcome to the new people - sorry you find yourself here.

@peperethecat the SO programme is taking letrozole to stimulate your eggs to produce 2-4 follicles, then a scan to check readiness (usually dominant follicle(s) 18mm, then the trigger. And timed intercourse the day after trigger and day after that. As I said before it doesn’t matter whether you ovulate yourself or not normally - you need the trigger because the letrozole means your ovaries have been artificially stimulated and your own hormones might not necessarily catch up. Or there’s a risk that if you wait longer more follicles might develop and you increase the multiple risk. So the scan and trigger is an essential part of it.

@HoldingOn2Hope I also have hashimotos and used to faint at all my blood tests. Then I realised that if I lay down for them and looked away I was always fine. Guess you’ve tried that? I haven’t fainted in a blood test now for about 6 years! Not usually squeamish at all!

@Eeviee I’ve had a seriously furry face but wasn’t sure if it was the pred, cyclogest or pregnancy that was the culprit.

@FrannyAnny82 I’ve been thinking of you a lot. Have you had results back? (Sorry if I’ve missed this)

[HoldingOn2Hope]

@Wishing5tar Ah ok, in that case I'd go Day 9. When I l've been on days 9/10 they've kind of worked out when to trigger and sent me home with it never asked me to come back for a repeat - I don't know whether that's because it's a good 3.5 hours drive. His analysis has always been pretty accurate too as I do ovu tests myself. I think the only time I was out was in early February and I'd gone to a party and stopped the night and hadn't taken the trigger with me as I wasn't meant to ovulate until after the weekend but it came on early!
The nurse told me I should I have done trigger as soon as I got home but as it was a Sunday I didn't know who to ask.

@HarrietM87 I'm not alone then, I feel better. They did kind of put my chair right back today. I need to really get over. One thing that's always frightened me is giving birth! however after everything I've been through I think I'm stronger than I think I am. In my first pregnancy I must have really worked myself up at the first midwife appt (I cant even remember much it was all a blur once mc was confirmed) that she called me the same evening to say she recommended hypn-birthing from 16 weeks and not 30!!! 🤣
Did you decide not to have the 16 week intralipids? Xx

[HoldingOn2Hope]

@FrannyAnny82 hope your clinic appt goes well tomorrow. I had the antibody test today no results yet, but was told to continue with pred. You were right about the Vit D it is 2,000 units do thank you for pointing that out to me xx

[peperethecat]

Thanks for the explanation, @HarrietM87.

In that case @Wishing5tar I would probably err on the side of going earlier rather than later.

[Wishing5tar]

Thanks @Crystal2020 ☺️ A lottery is such a good way to describe it. I guess I’ll see what the clinic advise and just go with us. I guess there’s always next month to tweak it if it doesn’t go to plan x

[Crystal2020]

Best of luck with it @Wishing5tar! It’s definitely all about tweaking as he might refine the dose etc depending on your response. Let us know how you get on x

[mezgaski]

@Eeviee thank you for setting up the new thread

Wow it’s been busy!

Whispering congrats to @ultra26 and @HoldingOn2Hope

@HoldingOn2Hope your FRER lines were just like mine were with this pregnancy (I’m 18 weeks now) and also I had no symptoms at all until about 7 weeks I think (I actually felt pretty amazing which was disconcerting). Keeping everything crossed

Xx

[Gooe]

Thanks for setting up the thread @Eeviee
Hi to all the new members x

[HoldingOn2Hope]

@mezgaski thank you! The nurse at the clinic did reassure me that as we are asked to test early lines do be lighter to begin with. I'm not resting again anyway, I've done 2 so going to keep to those positives.
I am a little concerned I've screwed up my Vit D! My gp prescribed me 1,000 units but on my plan it does say 2,000units! 😭
I've been taking the 1,000 plus procieve which has about 700units so I'm hoping I'll be ok and I've had a couple of holidays in the sunshine in the last 6 months so hopefully that would have helped. I think I just look for things to fret about! I'm going to take my prescribed ones from tomorrow as they may be better then the ones I have too Holland and Barrett.

[HoldingOn2Hope]

@mezgaski congratulations, 18 weeks must feel amazing! It is a bit worrying when you have no symptoms but I'm glad you felt amazing. Again nurse reassured that pred makes the symptoms, I think I'd just feel better if I had some!