Immune/NK issues - aka Pred Thread no. 23!

[Chickjen]

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

@sometimesalways welcome. I've never heard of those risks but also I think we all need to take a balanced approach to risk: maybe I have a higher risk of gestational diabetes taking the steroids but without them my baby would have almost certainly died as my others had so that was certainly a risk worth taking for me.

That's how long you'd be on them if you were lucky enough to fall pregnant first time, yes. Most of us haven't found that to be the case but if you're not pregnant you stop straight away so you'll end up being on them for 2 weeks every month until pregnant and then an extra 10 weeks the month you do fall pregnant.

I had quite bad withdrawal side effects and a moon face but that was it and of course completely worth it to now have my Tiny Dancer. I would have thought long term is more in the years than a few months.

Good luck with your journey

@KittyKatSmile thank you! And congratulations!
Yes I see what you mean. I honestly don't know how reliable the articles I found are (re: long term effects), it seems to be a subject with a lot of maybes and 'more research required' and that's what makes me feel uncertain. To be honest, as you say, it's all a balance and I suspect I will be taking them - so many people do and get results. I have a tendency to overthink things and get anxious so that's not helping I guess.

Congrats to everybody who is weaning off! Am rather jealous!

@Greenscafe2019 and @HoldingOn2Hope I've been put on 10mg of Prednisolone if that helps (for Thyroid Antibodies).
Also rather worried that they are what's keeping things going... but been told to wean off from 10 weeks.... (am 8 weeks tomorrow)

I've not yet been told when to wean off the Heparin injections, which I'm generally still really struggling with (pain/tears etc). For Anticardiolipin Antibodies. Has anybody been able to stop that after 1st trimester? Or is always to Week 34?!

@sometimesalways I think we were on the same IVF thread at the end of last year. Is your consultant suggesting any other meds alongside the steroids? I'm just weaning off the pred now and I haven't had any side effects - 12 weeks is a relatively short period of time to be on them. If I remember correctly, I started on 5mg a few days before my FET, then on the day of the FET went up to 20mg, now weaning down by 5mg every 3 days.

Ladies for those of you on pred and progesterone, how messed up (if at all) did your cycles get? I always used to have 28 day cycle with ovulation between day 11-13. My last cycle was 43 days and this month I didn't get a positive OKP until day 18/ 19. Has anyone else found their cycles have gotten much longer since being on the meds a few months?

Hi @Eeviee the second month was a bit weird but other than that they have pretty normal. Onto month 4 now and hope it stays the that way but we never know

Hi ladies, hope you don’t mind if I join. It’s been so helpful reading about all of your experiences.

I’ve just had my 3rd early miscarriage (my 3rd in less than a year) and I’m now booked in to see Dr S. I had been feeling excited about the appointment and taking some action but now it’s getting closer I’m feeling more nervous. Would love to hear more about how your 1st appointment went. Do you get the chance to talk/ask questions or is it more listening to what he says? Does he scan you?

Thanks in advance x

@Crystal2020 welcome & so sorry you find yourself here ☹️ The first appointment was okay, don’t be nervous! Have they sent you the questionnaire to fill in beforehand? Dr S basically just talked us through that, asked us questions and then told us what tests he’d recommend. He did keep asking if we had any questions but it wasn't a very long appointment. He did an ultrasound scan on me there and then but that’s because I hadn’t had any tests done on the NHS. He did give me the option of doing it on the NHS to save some money but I wasn’t hopeful my NHS appointment would come through anytime soon. Where are you seeing him? We seen him initially at Harley street so we then went down the street for the blood tests (& my husband had the sperm fragmentation test) but at the Epsom clinic they have the facilities to do them there. Be prepared to pay lots 🙈, and for him to tell you to stop trying until you’ve got your results. You’ll go back two weeks later to go through your results and for Dr S to start you on your treatment plan. I hope this helps but just let me know if you’ve got any other questions xx

Thanks so much for your reply @Wishing5tar - that’s really helpful. Yes, I’ve sent them back the forms and any of our pre existing test results. From what you’ve said, it’s likely won’t have to have a scan this time then as I’ve already had the horrible HyCoSy thing done etc. Think the idea of having to have a scan with someone new was scaring me as I’m really really squeamish about scans, smears etc (not ideal for someone who keeps having miscarriages!). We are seeing him at Epsom...London would be handier but it would have taken ages to get an appointment & I was desperate to get booked in ASAP! On one hand I’m hoping he has an explanation for what’s happened to me and on the other I want him to say the tests are all clear and I’m fine! X

@Crystal2020 no problem! Yes I know what you mean about wanting answers. I would say that he has smaller margins than the NHS does for things and even if nothing flags on your tests I’ve read on here that he’s put people on treatment plans ‘just in case’ so you will likely have a way forward soon 🤞🏽 Also if he recommends your partner to do the sperm test he would have to abstain for a few days before (just something to bare in mind in the run up to your appointment) oh and I think it ‘takes place’ in the disabled toilet of the Epsom clinic... just to manage his expectations 🙈

We did your initial appointment in London but I much prefer the Epsom clinic as you can tell it’s his main base (even though it takes us an age to get there from the north east). All of the staff and nurses we’ve dealt with have been lovely, it’s just Dr S who can be a little cold xx

@Crystal2020 I agree with all @Wishing5tar has said. Don't expect a long lengthy appt and chit chit with Dr S - he can come across cold but as long as he gets result who cares. My appt with him lasted 22mins and then of course I had the bloods etc done.
Ask Q's though as I wish is asked more in my initial appt, I'm on my 1st month of his plan, I abandoned last month as hadn't responded well to the letrezole.
Good luck and hope all goes well we are all here to support if needed x

Thanks @HoldingOn2Hope. I’m glad I know to expect that before the apt because I definitely respond better to a bit of warm & fuzzy. But like you say, results are results so I need to just go with it. Think I’ll do a list of questions in case I get overwhelmed while I’m in there. Sorry to hear the letrezole didn’t agree & wishing you a better month this time around.

@Wishing5tar that’s really interesting what you say about the NHS margins for tests. I’m at the top end of ‘normal’ on some of the ones I’ve already had done & been told they’re fine but he might have a different view. And hubby will be able to avoid the disabled loo (thank God!) as we’ve already had the DNA tests done & spent months fixing it. So at least that’s 1 thing we’ve already sorted! X

Hi everyone, I was just wondering what people's thoughts are about cardio while on the pred please? There's a class I want to take tonight but I know the steroids can raise your heart rate and blood pressure so I don't know if it's a good idea? Sorry if I sound like a huge hypochondriac!

@FrannyAnny82 I continued to exercise as normal whilst on the pred: spin class, weights, aerobics, trampolining. Would definitely recommend it, both for your head and to keep the side effects of the pred down!!

@KittyKatSmile Thats really great to know, thank you. You're so right, the exercise keeps me sane!

Hi all, i was bit quiet on this thread, was recovering from a recent miscarriage. Jus read that someone was asking here about Mr.S's thoughts on Prof Quenby's trial on using Sitagliptin (Januvia) for recurrent miscarriage. I asked him in my review appointment, but he doesnt believe on this and also said that the trial is not focussed on a larger audience..So not very conclusive.
Has anyone here or someone u know was on this Sitagliptin before?
I m just thinking to go back to Prof.Q on this but would like to hear from someone who has already tried it.
@KittyKatSmile - hope all going well for u?
Congrats to everyone who hav got their BFPs and good luck to others!!

Hi @Hopeful07 so sorry you're going through this, I hope you're starting to feel better. It was me who asked, thank you so much for letting us know what Dr S said. I still haven't managed to find anyone who has tried it unfortunately but I'll update if I do. I'd love some though, it sounds so much nicer than the pred 😂

Hi All,

Those of you on or were on pred did you find yourself peeing a lot more?
I've just read the pred can raise blood sugar levels that can make you pee a lot more. I literally can't hold it in and have to run to the loo (sorry tmi)
I am drinking more water as it's also making me thirsty.
I am prone to uti's and although I don't feel like I have one not sure whether to speak to Dr S nurses tomorrow.
Oh the joys!

HI All,

Would I be able to join the thread...?

I am at the beginning of my journey really, although feel I may end up seeing Dr S by the end of this year.

I have an underactive thyroid, and have done since approx 2011. I must admit that I wasn't very strict in taking my thyroxine until the last year or so, but it has been regularly increased as well.

I had my implant removed in July 2019 and fell pregnant straight away, with a positive HPT on 6th August 2019; my first thyroid blood test was on 20th August, and TSH was at 10.5! My Thyroxine was increased to 125mcg. I went for a scan at 9 weeks and unfortunately no HB was discovered and baby measured 5/6 weeks.

I decided to take a Medichecks full thyroid panel as NHS only test two aspects... this was just after my ERPC and whilst I was on 125mcg - my TSH was correct, but T4 elevated. Also showed raised Antibodies.

I have since had NHS standard blood tests, been decreased to 100MCG, and now increased to 125 one day and 100 another; I had a chemical at the end of December and my TSH in January was 4.5

I also took a private Progesterone test at 7DPO this cycle and the result was 27.9nmol/l which I understand is low? My luteul phase is also 10 days.

It all seems to lead back to my Hashimoto's, but the GP does not seem too concerned.

I have booked to see a consultant on Tuesday who specialises in Reproductive Endocrinology, and turns out she works with Dr S at an NHS hospital.

Feel very deflated in the fact that the NHS don't seem to offer any help, and we will be facing a large bill, but hey ho.

Anyone else with Hashi?

Sorry, cannot read though all threads haha

xx

Welcome @ceebee21 I have an under active thyroid and taking 100mg thyroxine too, although it is not caused by Hashimoto's (just lazy). I think you are doing the right thing by concentrating on this first, ideally TSH should be below 2/2.5 and relatively stable before ttc, and Mr S would not start you on any treatment plan until it is. Hopefully this is the only issue for you and once it's under control you will have no need to see Mr S anyway 🍀

@Chickjen thank you, fingers crossed I don't.

For those that have seen Mr S, what are the initial costs, and are they difference for everyone?

Am just wondering if you have to have all blood tests offered by them, or what the set up is etc.

Thanks

@HoldingOn2Hope Yes, the steroids made me really thirsty and wee a lot... on top of the insomnia! I messaged the nurses and they said to finish the course and book an appointment but it eased up after a few days so I didn't bother. Im on cycle three and I do still get thirsty.

Hi @ceebee21, I have had my first appointment & the costs will vary from person to person. He reviews all of the tests you’ve done previously and says he doesn’t want to recreate the wheel by getting you to re-do stuff you’ve already done in the past. So costs will really depend on whether you’re starting from scratch with the tests or not. X

@Crystal2020 thank you so much, that's helpful. I have had quite a few done but it's the NK cells that's the main thing, and the most expensive typically haha xx

Same @ceebee21 - they’re the main ones I was missing too (obvs I’d be missing the most expensive ones!). And now I’m sooooo impatient to know the results. Think I’ll be disappointed if I don’t have an NK issue weird as that sounds. X