Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

@Annabell1 thanks. I work in a really small team (3 of us in the office) and one of my colleagues is pregnant. I'm not jealous of her, and she's respectful enough to not talk about it all the time, but she constantly rubs her stomach and she often makes reference to the fact she's pregnant and it's essentially just a daily reminder that I'm not. It just really gets to me sometimes and having not tried in months now, it just feels like I'm doing nothing.

Just to clarify so I don't seem like an a hole, I'm not angry at her for rubbing her stomach or annoyed etc, she should be connecting to her baby. It's just so hard to have a conversation with someone who is constantly rubbing their belly... Every time we talk it's a reminder right in front of me that I should be pregnant.

@Annabell1 yes of course that makes sense to let the haematoma heal before potentially recommending aspirin. I will check with my doctor too as they just said come off but nothing about recommencing. When is your next scan? I hope you are feeling ok in the meantime

Yes I am on progesterone too. Utrogestan pessaries and also Lubion injections which was once a day but they have told me to increase to two a day as a precaution and I've just on my way back from having a blood test to check on my levels.

I thought about asking them to test my HcG but I chickened out but I popped into the chemist to buy one of the tests that tells you the no. of weeks but I'm not sure I'm brave enough to do it!

@Amy00 very best of luck for your test RJ is month

@SunDance21 sending you a big hug. Your feelings are completely natural and I think it's important to acknowledge that and to be kind to yourself. I appreciate it must be really hard having a colleague that you have to work closely with that is pregnant. I've been around quite a few pregnancies since we have been trying but probably not someone that I have to engage with on a daily basis. I really hope that your time will come 💕

@SunDance21 urgh that's annoying timing with your blood test. I think I was lucky in that my levels weren't super high so he said I didn't need a test to check they were low enough - he is just assuming it's worked 😬 I know what you mean about feeling like everything has stalled. I'm feeling the same like a lot of our friends have had babies now and the babies are the same ages ours would have been if we hadn't kept miscarrying. Like we would have a 6 month old now and be thinking about starting to try for our second. Incredibly depressing but we just have to accept that we are on our own paths. Gosh that must be so hard working with a heavily pregnant woman every day. That is one of the silver linings I get of still working from home! Your feelings are totally normal and valid btw - all of us would feel exactly the same, it's like a strange thing of wanting to be happy for them but also really sad for yourself. I hate it but just keep telling myself it's temporary and eventually we will have our baby and life will go back to normal... 🤞

Thanks @Annabell1. Hoping your heamatoma has sorted itself! When is your next scan?

@RosieLeeD aww good luck with the test! Just know that they aren't very accurate so if it shows a lower number of weeks than you expect please don't panic, it is very normal for that to happen and can be affected by all sorts of things like pee dilution and hormone fluctuations through the day. ❤️

Thank you for the heads up about the test @Amy00 and I'm actually thinking now that I won't do it because I will do exactly that, panic! I'm just so impatient and given that my last first scan didn't go well I can't help but dwell on the negative!

@RosieLeeD thank you ❤️ I hope my time will come too (and quickly - I'm so impatient!). I also can't wait for her to go on maternity leave... which unfortunately isn't until the end of February. She's been rubbing her stomach constantly since she was 7 weeks 🙈 I think she's 24-ish now? But yeah, as lovely as she is... Her maternity leave can't come soon enough! 🙈

Regarding HcG testing, do not do the pee stick tests. My last pregnancy ended because the gestational sac didn't grow (this is very rare) but it meant my HcG levels didn't go up properly, and I spoke to someone at the EPU about them and she said she thinks they should be banned from sale.

They prey on peoples vulnerabilities and give you extra anxiety that you just don't need. As Amy said they are incredibly unreliable.

As hard as it is, try to relax and enjoy being pregnant today. There is no point in worrying about tomorrow because you can't change it. If I've learnt anything from the process I've been through it's that in pregnancy you can't control anything so there isn't any point in trying. The fact you're in this group means you've already done as much as you can to find answers and to give yourself the best chance of this being a successful pregnancy. ❤️❤️ I've got all of my fingers and toes crossed for you ❤️

@Amy00 thank you ❤️ I'm not sure if my levels are really high or not to be honest... my results were a bit random. The ones for getting pregnant were high but all the rest were within normal ranges.

My initial blood tests were taken while I was on my first period after a miscarriage and I also had a really high white blood cell count which speaking to other medical professionals they've said it implies both results might have been elevated still from my miscarriage.

Essentially I booked my appointment when it was confirmed my pregnancy was no longer viable but opted for letting it happen naturally (I really am terrified of medical things... needles... any sort of minor op 🙈), so it took a further 2 weeks. I sort of regret not just waiting to book the appointment but at the time when I was told it's heart had stopped I just felt like I needed to do something. I'd already had two scans where we had seen the heart beat and I needed it to be worth it, by meaning the heart stopping lead to answers.

It's so hard not to compare isn't it? I've deleted Instagram off my phone now as I keep seeing people who post about their little ones and I just think "ours should be that age" and I think it's unhealthy for me mentally.

Praying for us both that there is light at the end of the tunnel ❤️❤️

Hi everyone. I haven't posted for a while, but have been reading and sending you all good vibes. I've noticed a few questions coming up more than once and thought I share my story. I'm not a medical professional and not qualified to give any advice, this is what worked for me personally.
I met my other half late in life and we started trying for a baby a few months before my 41st birthday. I'm overweight with Hashimoto's (autoimmune underactive thyroid) and have PCOS.
Having had 2 chemical pregnancies in 10 months, I did some research and decided to see Mr S (my age required fast action). I never considered NHS - I apologise if this comes across in the wrong way. My age and weight would have not gotten us anywhere, we were running out of time. I'm very grateful for having been able to seek private help. This is my first advice - if you can, do your research and pick your specialist and then try and stick with them. In our situation, there are maybe 3-4 top specialists in the UK and they have different approaches. It's too easy to get confused and find ourselves running from one place to another. We need to feel comfortable and trust our specialists. Or have the initial appointment with them and then decide. I personally did not care about bedside manners etc., but success rates.
I went on to have my 3rd chemical under Mr S's care (we had just started trying again and treatment may have not yet worked fully). Eventually we decided to try superovulation and this worked very well in regards to getting pregnant. However I went on to have 2 further miscarriages, both around 9 weeks. I do believe my treatment had worked at that point, we were just rather unlucky having a large hematoma with one that did not work out and chromosomal abnormality with the other. Not going to lie, we were not sure if we had mental and physical capabilities to continue after my 5th miscarriage last year... But I'm writing this aged 44 having my 3 months old son next to me complaining that he does not have my full attention... It took us 3.5 years to get here. I truly believe it would have not happened without Mr S's treatment.
Couple of notes: my thyroid levels were regularly checked and tried to keep my TSH around 1 (I also feel the best when it's there). There is no clear answer as to why I kept having chemical pregnancies, but one of the likely causes is my autoimmune thyroid illness. I had very high TPO antibodies, in the thousands. I tried going gluten free, different supplements, LDN... nothing worked. My ANA was also elevated, this shows there is an autoimmune process in the body. After commencing Mr S's treatment with hydroxychloroquine (I never took steroids due to my weight), my Hashimoto's went into remission and antibodies dropped into the normal range and have stayed there for a couple of years now (I stopped hydroxy just before delivery, it will be interesting to see what the antibodies will do). My ANA also went negative.
Also, it may make sense to check if there is a chronic inflammation anywhere in the body that may trigger the immune system to go crazy. In my case I had a root canal done about 20 years ago that had gone bad years ago, but did not give me any symptoms. Once hydroxy had somewhat calmed down my immune system (so I believe), I started having symptoms. I had to get rid of that tooth eventually. A simple CRP blood test can show if there is inflammation in the body (it does not say where it is).
I'm happy to answer if I can you have questions, please inbox me.
Best of luck to everyone!!

@SunDance21 I agree, your feelings are completely normal. I know how annoying the whole waiting game can be and how difficult it is, if everyone around you seems to be pregnant. Hopefully the next few months will pass by quickly and maybe you will get some good news in the meantime as well. I'm wishing you all the best. ❤️

Thanks @RosieLeeD I'm alright, just feeling horribly nauseous and dizzy, but I guess that's a good sign. My next scan is in 1.5 weeks. Until then I'm staying at home hoping for the best. But I do have the feeling that the aspirin might have caused the haematoma. I also found an interesting study on that last night. pubmed.ncbi.nlm.nih.gov/26820772/
However, I know that some people need to take baby aspirin in order to stay pregnant. Just not too sure if I'm one of them? Let's see.
It's good that you are on progesterone too, that will help to stabilise the pregnancy. I have started with Utrogestan orally but have now switched to Cyclogest pessaries.
I must admit that I have also done the CB test with weekly indicator this time around. I've tried to avoid it last time as it stressed me out, but this time I was too curious so I have done it only once and it showed 3+. Maybe it's best not to do it and to wait until you have your scan. Hope everything else is good and you are getting on well. :)

@Kelspj Thinking of you today. Xx

@Wireless77 Thank you for sharing your story and congratulations on your little one . It's good to hear that your Hashimoto's is in remission too, I hope it stays that way. Stories like yours give us all hope. ❤️

Thank you for sharing @Wireless77 it’s always great to hear success stories!

Thanks @Annabell1 - thankfully everything was okay, actually measuring a day ahead, the actual scan didn’t fill me with much reassurance as she was practising and I think it was her first time, so she wasn’t quick to confirm HB etc and I wasn’t explained anything but I could visibly see the little jelly bean much bigger thankfully! Long may it continue x

@Kelspj Oh that's lovely to hear! :) I hope your next scan will be better. Enjoy the weekend. Xx

@Kelspj congratulations on your scan, I hope all continues to go well for you x

@Wireless77 thanks for sharing and congratulations on your little one x

@sundance and @Annabell1 thanks for your advice regarding the test. I decided to wait for Thursday. I'm just so paranoid because last time I have an early miscarriage and didn't find out until the 7 weeks scan and just wish I had known before.

@SunDance21 sorry to hear about your loss. Keep strong and hold in there, I'm impatient too but if someone would have told me 5 years ago it would take me this long to get to where I am now I wouldn't have believed I could do it, we are stronger than we often give ourselves credit for. I hope you have some time off over Christmas so at least you will have a little respite until your colleague goes on mat leave. You are so right about trying not to worry as it won't change the outcome and I'm very pleased to have found this group and people that can truly relate x

@Annabell1 Nausea and dizzy should certainly be good signs but still not pleasant, have you found anything that helps to ease? I was warned the immunosuppressants could mask pregnancy symptoms such as morning sickness so I guess that should be a silver lining, although I'd take any hint that everything is as it should be. That was an interesting article about the aspirin, thanks for sharing. It's so difficult to know but your consultant should know what to do for the best. X Mine is going to review whether I go back on the aspirin at the scan. I'm ok but really tired and struggling to do much else after a full day of work (although fortunately I am still working at home full time).

Hi everyone. For some reason I missed the notification that you’d tagged me @VenusStarr!

I had a scan a few weeks ago and he said my lining was thin and no signs of me having a period so he gave me norethisterone for 10 days. I actually had a light period. Went back for a scan on Monday and he said the same that my lining was thin and I wouldn’t bleed but I could start stims and then on Wednesday I started a proper period. I’m really confused and starting to lose a bit of faith in him. My acupuncturist said he couldn’t have scanned me thoroughly and maybe part of my lining is thin and that might be Asherman’s after the D&Cs I’ve had. So something else to worry about!

Then the nurse it off next week so they keep changing my appointments and so that is stressing me out. I honestly think this just isn’t meant to be. It’s out so much strain on my mental health and my marriage that I just feel like giving up!

Hi all, been a bit quiet on here for a few months whilst we've been in the bench. DH was diagnosed with high fragmentation so he has been undergoing various lifestyle changes before we've started TTC again this month.
What's confusing me is that I've been taking the various medications (pred, asp, prog) for the 10 days days since ovulation but now it's saying take a test and stop if negative. But the earliest pregnancy test I can find is for 6d before af. Meaning it shouldn't come up +ve for another 4-5 days. Did people's tests generally show earlier than the box said or did you keep going with the meds an extra few days?! So confused. I can ready feel the obsessive thinking creeping back.

Sending everyone lots of luck xx

Hi All, I was just reading that having a retroverted uterus (which I do) can make it harder to detect a heartbeat early on. Does anyone have any experience of this? I have my first scan on Thursday, I'll be 6w5d. Thanks x

@89Hope and @Badlydrawngirly just want to say hi and wish you both well on your journeys. Unfortunately I can't help with your questions as I'm doing the plan in conjunction with IVF so all meds are measured in relation to the transfer date.

@Badlydrawngirly keep your chin up 🌸 I too feel ttc and all that DH and I have been through has affected our mental health, particularly mine and our marriage, our lives have revolved around it for 5 years now. We are trying to do some fun things together and I am trying to find time for the things I enjoy (baking, sewing) that serve as a bit of a distraction but also because I was getting so fed up
of feeling like I had nothing to look forward to or to enjoy, I just felt like I was working and worrying about having a baby and not much else. We recently got a puppy, not to replace a baby of course but she is such a delight (sometimes a terror) and has brought so much joy to our house, it was the little lift that I needed to help me keep on pushing. It might also be worth speaking to a counsellor? 💕

Hi @Badlydrawngirly I'm sorry your clinic is being vague and unhelpful. It sounds confusing too. Have you started stims now? Going through losses and then ivf is really tough ❤️ I think it does make a difference if you feel supported by your clinic. Do they have a counsellor attached to them? Sending you a big hug.

@89Hope I've moved onto ivf now, but when ttc on the plan, I used to track my cycle and start the meds at 2/3dpo and then test at 11/12dpo. By that point I think a faint positive would show on a first response test. I dreaded testing though. Testing early does make you feel obsessive. Do you have a longer luteal phase? My period usually comes around 14/15dpo.

Hope everyone is getting on OK. I need to catch up as I dropped off the thread ❤️ xx

@RosieLeeD Yes, I'm trying to see it as a good sign as well. I have also heard that Pred can mask pregnancy signs, but I guess everyone is different.
The best thing against nausea for me is apple juice with sparkling water or biscuits. But eating in general is good. 😅
So happy to hear you got a puppy. I would love to get one as well, but our landlord doesn't allow pets. What breed did you get?
@89Hope I would try First Response. It's the best for early detection. Good luck 🍀
@Badlydrawngirly Sometimes we face roadblocks like this, but try not to let them drag you down. Hopefully this is just a tricky phase and things will get better. As Rosie mentioned try to focus on the positive things in life and do things that make you feel good. For me it's baking as well and going for long walks with my other half. ❤️

Sending positive vibes to everyone Xx

Sorry I'm being a bit dense but I should have realised that being on this thred you are most likely on Pred too? You are 100% right though, all meds affect everyone in different ways and I would quite like the reassurance of some nausea (although I might change my mind if I do)! I really fancy apple juice now you've said it and I love appletiser. We got a Beagle, she is 12 weeks today and a little cutie but quite a handful at times too and your landlord definitely wouldn't appreciate her howling! Her puppy training course starts at the end of the month so certainly something to keep me occupied. I hope you are coping ok with your wait to the scan 💕

@Annabell1 sorry meant to tag you in my last post! X

@RosieLeeD we got a puppy too in March and having him has been such a positive in our lives. Something to focus on.

@VenusStarr thanks for your reply. I'll try another test tomorrow or Tues but perhaps got to accept it was very wishful thinking it would happen first time.

@Badlydrawngirly my lining was thin at two different scans with light periods so I had a Hysteroscopy and they did find damage from the two d&cs I'd had to have previously. It's all so draining, I know how you feel when it seems like it's one thing after another. Sending hugs, you're not alone xx

@RosieLeeD Yes, I'm on Pred too, but luckily I don't have any side effects at all. I'm really happy that it doesn't disrupt my sleep. 🤞🏻
So nice to hear about your puppy. The first few months are probably the most difficult, but your effort will pay off. 💕
And it's really good to have a project to get some distraction and fresh air.
I'm doing OK, always a bit anxious when I'm spotting, but the Dr mentioned that this could happen. So I'm trying not to think about it too much.

@Annabell1 I was also expecting the pred to affect my sleep but it hasn't, probably because I feel so exhausted a lot of the time so have no problems dropping off when bedtime comes!

This is not the nicest thing to have in common but I also had a massive bleed on Sunday (following the earlier spotting) - lots of fresh red blood. I was convinced it was all over but I had a scan at the EPU on Monday and was told the baby is still there, was measuring as it should and there was a heartbeat. However there is still a 'large' pocket of blood nearly 5cm compared to a baby of 4.8mm and it is touch and go whether the pregnancy will survive. They didn't call it a haematoma but it sounds like exactly that. I spoke to both my IVF clinic and miscarriage clinic and given I have scans on Thursday and next Monday I will attend those as planned. I did forward the report to them both and they have both said the same - rest but we can't predict the outcome.

Do you mind if I ask how big yours was and how long it took to resolve? Did you have blood showing on the scan and did you bleed more or did it just get smaller in its own? I am still getting a little blood but no longer bright red although they did say I might get more. I feel like I have a ticking time bomb in my belly 😔 I realise these questions are very personal and specific so please don't answer if not comfortable. I guess I'm just looking for any glimmer of hope although my husband and I have agreed to take things one day at a time.

I'm glad you are feeling a bit better and hope your next scan will give you even more more reassurance and of course its natural to still be anxious and good that your consultant warned you there might be more spotting x

Hey @RosieLeeD oh I'm so sorry to hear. True it's not the nicest thing to have in common, but hopefully I can offer a bit of support. It's such horrible thing to experience.
When I started bleeding, there was a lot of red blood as well. I was lucky to be home.
I bled for a few hours before it slowly subsided. After that it got lighter and lighter, but I'm still spotting 12 days later. So it must still be there. I have heard that it can take a few weeks to resolve, but everyone is different. Another thing I have read is that the body expells everything thats too much to deal with and then potentially starts to reabsorb the rest. But that's not the case for everyone.
Unfortunately, they didn't tell me the size of the haematoma. So yes, they saw a pocket of blood on the scan, and funnily enough they also initially didn't call it a haematoma. They just mentioned that it was around same size as the gestational sac at 6+6, and they were not sure whether the pregnancy would continue either.
My Consultant here though, confirmed that the haematoma is not exactly sitting next to the gestational sac but further down in the uterine cavity and that the implantation site looks clear. I would recommend to ask where the haematoma is sitting exactly.
Make sure to rest, stay hydrated, ideally no baths or long hot showers, don't lift anything heavy, take Magnesium and Progesterone. Also avoid anything that is blood thinning (incl. Omega 3).
I'm really crossing my fingers for you. ❤️
The good thing is that there was a heartbeat and that you have a follow up scan scheduled soon. 🤗🤞🏻
Xx

@Annabell1 thank you so much, this is really helpful and invaluable to have the support of someone going through the same thing.

I will certainly ask about the placement - I need to get my head in gear and write my questions down this evening as I have my scan in the morning. Mine seems to be quite big 49mm at the widest point compared to the widest point of the sac of 14mm 😕 and I assume that because I bleed quite a lot that it was originally bigger than that!

I meant to ask if were you also on other blood thinners and were you advised to stop those? I was on aspirin and Fragmin but have been advised only to stop the aspirin and continue the Fragmin which I was surprised about. I didn't take it on the day of the bleeding but have restarted it as advised but will raise it again tomorrow.

I am still spotting too but darker blood however EPU did tell me to expect more blood. I understand how anxious it must be for you too and it's good your consultant warned you about the spotting. I hope it continues to improve When if your next scan? 💕

Hi all,

Good luck at your scan today @RosieLeeD - have everything crossed for you!

Quick question

I am just wondering when everyone has been told to start weaning from the pred? I am 10 weeks tomorrow and thought the general consensus was 10/12 weeks but I emailed Dr Tozer today to confirm and she has said I need to be off by 10 weeks so to start weaning from week 9, obviously it’s too late for that now but doesn’t this seem a little early? The placenta hasn’t taken over yet has it ?

Thanks all x

Thank you @Kelspj I'm waiting to be seen now - bag of nerves x

I have my file right here and it says pred until 12 weeks then ween off 5mg every 5 days (and I'm on 25mg). I assume the dose varies from person to person so maybe the instructions do but worth checking. Xx