Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

I got the HyCosy because I'd had a previous ectopic and lost a tube - so they wanted to check the remaining tube was clear. Apparently it can flush it all out and make you a bit more fertile. Have you had an ectopic? xx

Thanks so much that's really kind re the questions, I'm sure I'll have tons when we start properly!! So sorry you've had such a tough journey. I loved the Philippines when I went on holiday years ago. I used to live in Beijing and then Phuket for a few years. Will you start IVF again soon? xxx

@Hopeandfaith1990 Ah ok. No ectopic that I know of, although one of my losses was a pregnancy of unknown location that resolved itself. I am having constant spotting between ovulation and my period though, despite all of the drugs etc so that is what they’re looking to investigate.

That makes sense - it definitely reassured me to know that my tube wasn't blocked so I would recommend. It is an uncomfortable procedure but not tooooo bad. Have you had your progesterone checked at 7DPO? Do you use progesterone pessaries after ovulation?

@Hopeandfaith1990 I had progesterone levels checked at 7dpo ages ago and was on the low side. Had been cyclogest and had a couple of later first trimester losses while on it, although fundamentally still ended in losses. Interestingly my loss under CRP was just after the switched me to utrogestan (oral progesterone) which is what I’m on now, and so I feel like it’s less effective although appreciate that is anecdotal and not based on any actual medical evidence. I (and Dr Edge when I last discussed with her) suspect my issues are hormonal and I wonder if a higher dose of progesterone in some form may be helpful, but they haven’t been very open to my suggestions on that front! I’m hoping that if the scan/hycosy show no issues then maybe we can come back to that idea… Like I have no doubt that the immune stuff is also an issue as have Hashimoto’s and suspected other autoimmune stuff but feel like they’re possibly overlooking the progesterone issue?

Anyway that was quite the essay but we shall see!

@ALittleLight @elarcoiris @Hopeandfaith1990 @Objectiontime lasies I need some help as I literally don’t know what to do. I haven’t fallen naturally pregnant in over 2 years. This last month I finally felt like my old self I’ve been happy had a holiday, been to 2 cat cafes, been to Florida so had our bloods taken as Florida is a low risk zika area wont get those results for a couple of weeks. I had an appointment at the hospital this morning as have a dodgy mole on my face that the dr was fairly certain was a basal cell carcinoma. I knew when I ovulated ish because without being too crude it gets extremely slippy so I think I must be 10 dpo (ish). Before I went to my appt I thought I’ll just do a test to check like I do every month so I did it chucked it on the top went got ready and there’s a second line it’s faint but it’s there. I’d already chucked the urine out so couldn’t re test apart from a few stabby pains in my ovary area I feel no different.
now I’m panicking I never believed in a million years I could get naturally pregnant again obvs every one I have I’ve lost. We ruled mr shehata out if I ever was lucky enough again to fall pregnant but I would like the progesterone and the prednisone I’ve got loads in my cupboard upstairs but if I start taking them I can’t just stop, I have an appointment with nova fertility early June but that would be too late and there’s no phone number to contact them. My 2 thought are to contact my nhs consultants and beg or see if my ivf clinic will help me which I doubt very much. Honestly my blood ran cold and I feel nothing but terrified as I have no plan and I’ve always had a plan I just never thought it would happen xxx

@Gizmo1983 oh my goodness what a huge shock and surprise for you!!! This is an amazing thing to have happen but I can only imagine the anxiety and fear you must be feeling. How true, as soon as you relax and stop thinking about it, it happens! All you can do is breathe and take it one day at a time - which I know is easier said than done :( From reading comments in FB groups, progesterone seems to be hard to get hold off via the NHS. Nova is the place everyone mentions - is there anyway to get an urgent prescription without a consultation? Also try your IVF clinic as they may surprise you. The other thing I read somewhere is to email Tommys - they can send you a letter to share with your go asking them to prescribe it. Try emailing them for help: [email protected]. Also you might want to take baby aspirin too to cover the bases. Wishing you the best of luck and keep us posted x

Wow what a rollercoaster! So have you just done the one test at this stage? I'm not trying to dampen your reaction at all (and soooo hope this is your time) but is there any chance it was an evap, as it was left and read outside of the window of time? I'm only saying this because it has happened to me before and I got my hopes up and it broke my heart (again!). I was furious haha.

If you're sure its not an evap or indent then that's so awesome. Once you're sure, I'd definitely start doing the progesterone pessaries and pred if you have it. If you don't, I got it privately prescribed after my second loss and it was quite easy to do so. It is harder to get it via NHS but not impossible.

Sending you so much luck and babydust and really hoping this is your time xxx

@Hopeandfaith1990 hey sweet ii did one when I got in from my appt and it’s come up the same it is faint so I’m thinking it may be a chemical. By some chance I phoned our local private hospital they had a gynae appt at 12 so I went and he gave me the prescription for what I need ( minus the hydroxy I didn’t ask ) so at least we are giving it the best shot. I’m just going to live my life exactly the same as for the first time in a long time I’ve been genuinely happy and enjoying my life just the way it is. I suspect a chemical as the line isn’t that strong but hubby has said even if it doesn’t work it’s shown him it’s defo time to move to donor eggs and he will not have the doubts he would have otherwise. This will probably end up being the most expensive chemical in history (£300 consult plus £250 for meds) but I’m happy to spend that for the gamble. I’ve been to 2 cat cafes, Florida so literally just had the zika test, eaten crap and a prenatal every now and again it if I can force it down I have kept on with the folic acid so I suppose that’s one thing

@Gizmo1983 Oh that's wonderful! What DPO are you? I don't think there's any reason to assume its a chemical just yet and you are doing everything you can to help it stick :) it sounds like you've really found some balance with the whole thing recently so hopefully that helps. Well done, its not easy! You have a solid 'back up' plan so I think staying as chill as possible and hoping for the best is a good combo. 😀

@Gizmo1983 Aiee! What a rollercoaster for you. As others have said, you’re doing everything you can at this stage and we’re all here keeping absolutely everything crossed for you. Sending lots of love your way!!

@ALittleLight im so sorry I missed your message earlier I actually have an appt with nova for 4th June I emailed them to see if I could get any sooner they had the 28th May and said they would keep checking, I called the nhs and spoke to my consultants secretary they wouldn’t see me or have anything to do with me till 6 weeks so I somehow managed to get a private gynae apt today and I’ve got what I need. Thank you so much for your kind words and help xxx
@elarcoiris @Hopeandfaith1990 rollercoaster is the perfect way to put this. When I saw the line I just thought shit I haven’t got a plan.
i honestly don’t have any hope this is going to work out but I’ll take the meds and I am just going to try and live my life and not get consumed by it I’ve spent so long building and doing a life I can honestly enjoy not putting stuff off just in case and I’m just going to keep living that way I’m so sorry if I sound negative it’s just been such a shock oh and good news I don’t have skin cancer, I saw a dermatologist who said he was certain it was but it’s on my face so had to see a plastic surgeon who says he doesn’t know what it is but it’s not cancer and froze it off my face.
I just want to say a huge and very heartfelt thank you so much to you lovely ladies for being there for me this morning and helping me out and getting my head straight. ❤️huge love to all

@Gizmo1983 A huge tentative congratulations to you, Dont be thinking it will be a Chemical just because its faint. At 10 doo it is almost bound to be faint. I've only ever had very faint positives at 12 doo so you are in very early territory.
So glad you have the meds you need. Now you will just have to prey and keep as well as you possibly can. We are all 1000 percent routing for you. Sending all my hope and hugs x

Just catching up after a few days away. Gentle congratulations @Gizmo1983 it must feel terrifying, but I am crossing everything that this works out for you, you really deserve this! I hope you're feeling a bit calmer now after the initial shock.

I have my post humira blood tests this afternoon and really not feeling too positive about it. After a lot of research on Chat GPT/symptom spotting I'm now wondering if I might have gluten sensitivities which are contributing to the inflammation. I'm going to try and cut back as much as possible, but am expecting a high result in a couple of weeks.

Hope everyone is doing okay x

Hi @Fletchasketch thank you so much, I’m ok just getting in with my life and we shall see what happens. Gluten really is a funny one isn’t it I go through phases where I think I may have an issue with it and then don’t but I was tested and was negative. Chat gpt really is amazing isn’t it
@Objectiontime thanks so much my gut is telling me this isn’t going to work out but we shall see I have a pic of my lines the last few days but o don’t want to post a pic as I don’t want it to be triggering for anyone they are faint but they are there I guess I’ll just keep going and see what happens. How are you doing? Xxx

@Fletchasketch I hope you get some answers from your results. I have celiac disease and a bundle of other allergies, a couple of which I only recently discovered so now I am an avoider if many foods,

@Gizmo1983 Bless you, I completely understand how you feel re the tests. I think your past experiences are not alowing you to have any hope and that's sad but I absolutely get it and I will be exactly the same if my time comes round again.
I'm not too bad. I do think the weird positive thing about getting negative tests for several months running is that you kind of get used to it and tend not to bother symptom spotting or getting fidgety in the TWW because the expectation of a negative test outweighs everything else. It's a rotten ride unfortunately xxx

@Objectiontime i was just in so much shock the other day I couldn’t get my head straight, I took it chucked it in the cupboard as hate seeing the bloody things and checked it before I went out and thought wtf. In honesty since I found out I’ve almost self sabotaged eaten complete crap we were also just on the verge of getting a kitten and our donor counselling is on Tuesday as well as awaiting our zika test results ( can u imagine).I honestly had absolutely no inkling at all there was going to be a line there i almost wish I hadn’t found out till later and I could have got a couple more weeks of not knowing in. It sounds morbid but if it’s not going to make it I hope I loose it sooner rather than later I can handle that just not another horrendous 5 months long miscarriage. I spoke to my most trusted dr on the phone yesterday I’m seeing her privately next week she reckons we have a 50/50 chance. Hubby is skipping around. I’m extremely grateful to have this chance after almost 3 years since my last natural pregnancy but the pressure I’m feeling and my tests aren’t that dark is awful. I called my bereavement midwife I was given after my 15 week loss they used to be amazing promising hand holding, scans, counselling there were 2 lovely ladies all that has just disappeared and I was told to call epu at 6 weeks.
@Objectiontime @elarcoiris @Hopeandfaith1990 @Fletchasketch I have to give a massive shout out to nova fertility. I actually had an appointment with them
booked for 4 June to get a plan for donor transfer. I e mailed them after my suprise and they gave me an emergency appt for 10om
last night. I must say the dr was fantastic, they/we are happy to give me all the meds that i had with shehata this includes the hydroxy and also intralipids at cherish in Birmingham. This is in no way saying cpd are better or worse but we had a very bad experience last time we were there with him
really upsetting my husband and he is a hard person to upset. I got a month worth of pred omeprazole fragmin and cyclogest from my private dr for £217 nova were fine with this no pressure to buy the drugs off them and they are getting a script to me today for the hydroxy. Also the intralipids are £270 ( ish I may have that wrong ) and only a 3 hr drive away for my rather than a 7 hour one way trip. I just thought I’d tell you of my experience as this has saved me a fortune for the same meds.
much love to you all xxx

@Gizmo1983 I can't imagine how you must be feeling right now- all the emotions at once. I'm sorry the bereavement midwife wasn't helpful, would it be worth trying Tommy's? I've never spoken to them, but they must speak to people who are newly pregnant after miscarriage all the time. I've only heard good things about how compassionate they are. Thanks for the tip on the cheaper prescriptions, we're up to 5K spent but only live 20 minutes from Epsom so haven't really considered doing it another way. If it gets to 6 months, I may well need to look at alternative options.

Does anyone know if there's a way to source Humira more cheaply?

@Objectiontime did you do your sensitivity/allergy tests via the NHS? I'm debating going private for these, but we've already spent so much, if it won't take too long I'll stick with the NHS. Hope you're finding it relatively easy to manage.

@Gizmo1983 I really get what you say about finding out early and unexpectedly. That said, at least knowing now you have been able to source the meds quickly to give yourself the best chance. I very much expect that your heart is beating loudly in your chest right now! Pathetic as it may sound, can I suggest you look into practising some basic mindfulness and/or yoga. Plenty of videos on U tube. Just thinking about making some attempt at reducing what must be horribly high stress levels. Good to know re med costs. The main reason I didn’t go to Dr S in the first place was because of the time off needed going to and from and the insistence of the scans very regularly once pregnant making it both costly and really hard re the time out of work. I don’t have the sort of role where I can just keep dipping in and out for appointments because I can’t work around the day. My work time is set in stone. The desperation for a successful pregnancy is awful but I have to pay the bills so I went with a different option with the same tests as far as I am aware. I do feel your stress!!

@Fletchasketch Some of my allergies I have known about for a while and they were diagnosed via blood tests requested from the doc when I have reacted badly to something. That said, when I saw my private consultant last year he mentioned that it might be good to get my allergies rechecked. I did some research as I wanted a pretty comprehensive list of foods checked and eventually decided to go with the York test. If you Google York allergy tests you will find the page and I went with the premium food intolerance test, which is currently stg139 and covers a multitude of different things. Among other things I expected My result showed one particular common item that I did not know I had an issue with but it actually came up as my highest intolerance/allergy so I am now avoiding that too.
The issue with NHS or even some private clinics is that they don’t test a nearly good enough range of food items. Just my view though x

@Objectiontime Yes, I found that one and was quite tempted by it. There's a big warning on the NHS site to say not to use private providers as they may diagnose sensitivities that aren't genuine. It sounds like you've had a positive experience though, so think I need to reconsider!

Whispering congratulations @Gizmo1983 hope it all goes ok xx

@Fletchasketch I hope your tests give you some answers/reassurance xx

I went for my scan for my 2nd round of super ovulation, and sadly they advised me not to DTD this cycle, once again, except this time it was due to a huge follicle measuring 33mm! So I took the trigger shot to get rid of that follicle and wasted money on another failed round. It was Dr Edge who saw me this time and advised me to take gonal f in my next cycle instead of letrozole, and see what we get.

Has anyone else tried this approach instead of letrozole to stimulate follicle growth? Xx

Hello lovely peeps
@Newbeginnings22023 thank u ☺️ goodness knows what will happen with this. I was keeping super busy to make the days fly but I’ve had an awful headache for 3 days now so I’m stuck with an ice pack on my head having some very light pink discharge but super light. I’m very resigned to what will be will be but already know I’ll be crushed and have to pick myself up again.
oh no crikey you don’t even think about not being able to do the super ovulation do u I’d just assume you’d go for it no matter what I’m soooo sorry I can imagine you would be gutted. I hope so much the gonal f helps. It’s ok saying see what we get ( I love dr edge she’s lovely) but it’s just more time money and heartbreak.Bloody hell this journey is just horrific isn’t it absolutely horrific.
@Objectiontime im the same I’m stuck to a very rigid time I can go, I think I’ve already said but at our 10 week loss appt we were told we would have to move closer to Epsom for an amount of time, maybe we were hypersensitive but who can move just like that. He probably just got us at the wrong time when we’d literally just been told we’d lost the baby.
@Fletchasketch my sister is allergic to so many things it’s a really interesting thing I have no known allergies but I get absolutely horrific migraines and she said I should get my food intolerance checked I ignored her but maybe I should have listened 😂😂😂

Ridiculous to suggest moving close to Epsom I think. Not only is that, as you say, almost impossible to achieve at speed but we are talking about Surrey here! Its bloody expensive!!!
For your reference below ladies, here is the link to a short version of an article I found in my research regarding allergies and miscarriage. I did find a longer version but I seem to have misplaced the link at the moment...

https://go.skimresources.com/?id=470X756&isjs=1&jv=15.9.1&sref=https%3A%2F%2Fwww.mumsnet.com%2Ftalk%2Fprivate-messages&url=https%3A%2F%2Fwww.sciencedirect.com%2Fscience%2Farticle%2Fabs%2Fpii%2FS1081120623008384&xs=1&xtz=-60&xuuid=74f570f3ed236630ef082900e9154c05&xjsf=other_click__contextmenu%20%5B-1%5D

@Objectiontime yeah I’d have a one bed flat and no Job and probably no husband, could probably bring my chihuahua 😂😂😂.
im going to read that article thanks so much for the link, it looks very interesting. My sister and her hubby have many allergies and they don’t have kids they were planning after their wedding and that was 7 years ago she’s never said if they had issues or changed their minds x

Yes, exactly! I love a chihuahua. My parents have two labs, love dogs 😁. Yes the allergy stuff is interesting. It scares me a bit to think that avoiding any allergins or food sensitivities might help some women with prevention of miscarriages and yet it is not something that generally ever comes up in investigations.