Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@Maxime34 I was on the same protocol as you (complex I think) but after another loss they then bumped me up to super complex (the same as complex but plus hydroxy).

Hi All,

Can anyone help???

I’ve been told to get further immune testing done by my clinic but can’t find anywhere to do it. I was recommended to go to professor Quenby but they won’t see me as I haven’t had 2 miscarriages. I also tried a general immunologist and they said they can’t help. My clinic is not expert on immunes & can’t really say what further tests I need after a positive ANA result but they believe I may have underlying immune problems and have suggested I get this further investigated. I’m really at a loss as to what to do. I can’t do too much travelling but a one off trip to London could be arranged if absolutely necessary although it would be difficult. I am midlands based. Alternatively is there a definitive list of tests that I should have covered that I could take back to my clinic? I’m not looking at testing more controversial things like NK cells but just want to have covered all the basics.

Hi @InvisibleDreamer if you’re looking to be investigated as to why you had a positive ANA then you can ask your GP to refer you to a rheumatologist or endocrinologist. They can rule out auto immune conditions. Although, just to warn you a positive ANA on its own doesn’t mean you have an auto immune condition. Hope this helps xx

Hi everyone, I’ve been reading up on silent endometriosis and it’s connection with immune issues and was wondering if any of you ladies with known immune challenges have been investigated for, or have been found to, have silent endometriosis? I think I’ve thought deep down for a long time I might have silent endo but investigating means surgery so no one I’ve seen is keen on pursuing that route, without my having any symptoms besides losses and infertility. Anyone who is seeing Dr Shehata - has silent endo been discussed? I have my first appointment with him this Thursday and wondering if he considers this alongside immune investigations? Tia xx

I read this which I found very interesting: www.endofound.org/jeffrey-braverman-md-outsmarting-endo

@LuckyNo14 I am seeing an endocrinologist but they are only interested in my thyroid. Unfortunately I have chronic health issues which would fit with an autoimmune condition. I could just go to GP and ask for thrombophilia test as suggest by my gynae but I think I may look at going somewhere like Dr. Gorgy for further advice & will do some research into the different tests I’ve seen on their website. It will mean delaying any transfer at least a month but I’d probably have to anyway this cycle as I don’t think my clinic would want to do a transfer on Xmas Eve! It’s just hard trying to figure out what tests might be helpful at this point.

@HopefulH I have/had silent endo in terms of having no pain. I did however have watery bleeding whilst on my period and very heavy periods. This started post miscarriage so I think the pregnancy/miscarriage probably triggered it. I’ve had it removed via laparoscopy and just had my first proper period which was still very heavy but not as bad as before.

@InvisibleDreamer has your endocrinologist ruled out Hashimotos? That could give you a positive ANA. Or would your GP by able to point you in the direction of which speciality would be best based on your health issues? Definitely try & get them to do the thromobophilia aswell. Otherwise, from what I’ve heard gorgy has a wide range of tests so I would choose him over the others especially if you don’t want to test for NK cells. Sorry, can’t be of much help. Hope you get some answers xx

@Sophi81 how did your scan go? Sorry if I've missed this! Xx

I was wondering too @Sophi81 , hoping it went well 🙏

Hi ladies. I don't know if anyone here will remember me, so glad to see some familiar names being pregnant! My thoughts with those still trying though, I'm sorry you're still here, this journey can be so so cruel.

So after my previous loss in March the testing came back as having Trisomy 15, so we thought we'd give it a go with no treatment (other than cyclogest) as my RMU gyno was confident it was just bad luck. I've now just had my 4th miscarriage, 3rd at roughly the same GA 8.5weeks. So now, we're going down the NK cell/immunity testing route. It's going to take a while to get my head round it all again, but keen to start asap. Is everyone here seeing Dr S or are there other clinics? I've heard of Nova which is online, not at thorough as CRP but a lot less money also, be interested to know of any recommendations as we all know there are such differing opinions it's hard to know where to turn next
Xx

Sorry just to add, we've had genetic testing, thrombophilia profile, all other normal RMU tests, I do have hashimotos caused by my first miscarriage incase anyone is in a similar boat xx

I'm so sorry you've had another miscarriage @FfayeN , sending lots of love and strength 💐

Unlike most here I've not been tested for NK cells. I'm under the care of Prof Quenby (at one of the Tommy's clinics) and she was happy to treat me with pred without any testing, on the basis that I have an autoimmune condition which she thinks could be linked with my miscarriages. Sorry I can't be much help on the testing front! I'm currently 21 weeks pregnant after 5 miscarriages (including 2 in the 2nd trimester) although we're waiting for tests to find out if there is a problem as the baby is measuring small for gestation, so we may not be completely out of the woods just yet. We're cautiously optimistic though!

@Sezmarelda1 congratulations on your pregnancy! I saw Prof Quenby for the Endo trial, withdrew and took the medication outside of it. She didn't seem to think my thyroid auto-immune could be linked, but I wonder if it's worth giving them a call now I've had another?
I have everything crossed for you that it all works out ok 🙏🏼 xxx

It could be worth asking to have a follow-up appointment with her @FfayeN , maybe along side private NK testing with Dr S or someone else whilst you're waiting in case Prof Quenby isn't supportive.

I wasn't eligible for the endometritis trial so got hold of the medication privately and took it outside of the trial too. I had a very early loss following that, and then fell pregnant with my current pregnancy. I'm honestly not sure if the medication from the endo trial has helped to get me this far, or if it's the pred and other meds I'm on. You get to the point where you're willing to try almost anything, even if it's just a stab in the dark x

@Sezmarelda1 I'm there already!! It's just knowing what place to go to to start that stab in the dark 😫. It would be easy if there was a clear signpost of where to go next. I think we may be at the stage of asking family for help financially to get where we need to be, but that's a really tricky conversation to have when we've dealt with it all so far by ourselves xx

@FfayeN I'm really sorry to hear you had another loss ❤️ I'm under Dr S. We saw Professor Quenby and she was adamant I had chronic endometrisis (I dont, dud the tests privately last year). She wouldn't offer any further treatment. I also saw her colleague Professor Brosens and dud the nk cells biopsy. He trued my on sitagliptin earlier in the year but I genuinely think that messed up my endometrium and I stopped responding to synthetic estrogen after 3 months on that. He also couldn't offer anything further for us.
Dr S is very thorough. We've still not had success though (lost 2 on the complex plan), so am on everything plus gcsf. But my last ivf cycle failed. We're having a break now and then will probably do superovulation with gonal f next year. Then look to maybe do ivf with crp. He dud say he still believes we can get there, so he's not written me off yet.
I hope you're OK x

Hope everyone is doing ok. I don't think there is, but has anyone looked into ivf with crp / done a cycle with them? I know they do it with Kings Fertility but we aren't local so the thought of it is not appealing. But my ivf clinic have run out of ideas I think xx

Ugh. Sorry about the typos 🙄

@VenusStarr I'm sorry you're still going through the mill of it, I do remember your story from before. It's useful to know you tried Dr Brosens though, I am unsure of going down that route. I think CRP may be the way forward. Just got to sort the finances. I hope the break does you good and you are successful very soon xx

@LuckyNo14 I think I do have hashimotos as I did have high thyroid antibodies and was told I would eventually develop under active thyroid. However I suspect there are other autoimmune issues going on. The GP can’t really help they have no idea what to do the only things they offer is referral to a pain clinic or CBT neither of which is of any real use. It was suspected some years ago that I might have polymyalgia rheumatica but further tests suggested this was not the case. I think I will enquiry with Dr Gorgy about prices and timescales then make a decision on what tests to do.

@FfayeN Total agree so difficult to know where to go for further help and what to do next. So Sorry for your loss 💔. Do you mind me asking what the endo trial was looking at? I would probably go back to professor Q as well as seeing Dr S if you have that option. I think get as much advice/info as possible and then make an informed decision on what to do next.

@Sezmarelda1 fingers crossed little one will catch up, could it just be a side effect of the pred that is causing them to grow a little slowly? I thought I read somewhere that it can be linked to lower birth weights but I’m not sure if I’m just making that up?

@VenusStarr What tests did you have to rule out endo? I thought the only way to be sure was to have a laparoscopy? I hope you are managing to enjoy a bit of down time.

@InvisibleDreamer Prof Quenby is looking at the relation between endomitrisis (which is infection or inflammation of the uterus, not endometriosis) and miscarriage. I self referred, had the first biopsy which was positive, so rather than risk the placebo I self treated with the doxycycline. As a result I then couldn't go back to see if it had gone but after 2 weeks of the anti-malaria antibiotics I would assume it had cleared!
Thanks for your thoughts, it's really useful to have some advice as the professionals seem pretty bad at it!!
Dr Gorgy is at a different clinic to Dr S isn't he? Are you already having treatment with him? Xx

@InvisibleDreamer I did the endometrio tests so looking at chronic endometrisis/ inflammation, infections and the implantation window. Everything was normal. I haven't had a lap for endometriosis. I dont have any symptoms of endometriosis though. Professor Quenby was doing research into inflammation and recurrent pregnancy losses. I do wonder with all the immune drugs I take even if I did have endo, it would help calm things down. I don't know though.

Thank you @FfayeN Dr Shehata works out of Harley Street and the CRP clinic in Surrey (I see him there) x

@InvisibleDreamer thank you SO much for mentioning about pred being linked to lower birth weight, I'd thought the same but when I tried to research it all I could find was related to pred being used for lung development in pre-term babies, so not comparable situations at all. I'd been searching for prednisolone and inter-uterine growth restriction, but changing my search to prednisolone and low birth weight has come up with a couple of papers that back up the link, so thank you for that, it's made me feel much more optimistic that there could be a less worrisome reason for the baby to be measuring so small!

@MyEasterEggs thank you x
@seven201 omg I can't believe u manage to keep it up for this long. I took the hydroxy in feb and stopped in March but til this day my hair is still falling out. It's defo the hydroxy but dr edge said that's out of my system now but it's defo still the cause. How many Letrozole rounds have u done? It didn't work for me this time around 😬

@Maxime34 I would defo ask but yes I don't like hydroxy! Not sure why they don't tell u the effects beforehand!

@InvisibleDreamer thanks for your reply. Did you have your lap on the NHS?

@VenusStarr i also don’t have any glaringly obvious signs of endo - but still wonder with my history of loss if that could be a problem. I do have mid cycle ovulation pain which hangs around, which I’ve read could be endo.

@FfayeN sorry for your loss. I’ve also recently had another loss at 9 weeks and trying to work out what next. I’m booked in with Dr Shehata this week.

I’m also under prof Quenby and did the trial early this year - had endometritis - but went private for more tests and treatment. I ended up needing three different antibiotics to clear. I’m wondering now if I’m predisposed to infection and if I’ll have another raging infection after my latest loss. I also had really high nk cells one biopsy (99% percentile) - but the next biopsy after doxy they were normal. So prof Q point blank refused prednisolone for me moving forward - and even after my latest loss, she still won’t treat me for immunes. I was told I’d have to pay Prof Brosans for a repeat nk cells test and I decided I’d rather spend my money with Dr Shehata now instead. Bleurgh it’s all such a long sh**y journey!

I just wanted to say I’m in awe how everyone in this group keeps on fighting. I’m at an all time low at the moment and have little to no hope - and then I read everyone’s posts and feel less alone navigating this s**t. I’m just not feeling that I’m quite up to the task - grief and trauma are taking their toll - and all my friends and relatives around me are having babies easily, it’s just so hard!! Sending hugs to all x