Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable 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

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

HI Guys,

Just wondering how everyone is getting on? X

My first appointment is next week!

Hi @LookingforAnswers86 good luck! Is this your first appointment with Dr S?

I’m doing okay, another BFN for me this cycle so just waiting for AF to arrive 💔

I wanted to ask ladies - how do you deal with the NHS consultants disagreeing with Dr S’s views/treatments? I had my initial appointment with my NHS consultant this afternoon (my GP and Dr S agreed it was wise to get the ball rolling with IVF) and I literally just had to listen to him tell me that whilst he respects Dr S there is nothing that supports his treatment using Pred, hydroxy or Intralipids for recurrent miscarriage. That he was basically putting my life at risk while prescribing me Pred during COVID. He never should have given me letrozole or Gonal-F because I ovulate on my own and that he doesn’t know how to help me because I’m stuck in a cycle of treatment with Dr S already and he doesn’t know what I want 😢 short of screaming down the phone ‘I WANT A BLOODY BABY’ my husband just stepped in and told him what he was saying was very upsetting and the fact that I need unexplained infertility for 2 years (not 1 year) before I would even qualify for IVF was news to us. He said he never meant to upset us and that ‘he’s on our team’ and has asked to meet us face to face to speak about things properly. He also asked for all of my previous test results and scans so he can review them and provide us with an ‘independent opinion’ on my current treatment plan and how he can help.

What an absolute mind f@#k!! Like how do you even get past the fact that for the last 18 month I have been on a treatment protocol he undeniably disagrees with?!

@Wishing5tar I really feel your pain. Having been to three specialists now, I can vouch that they are like builders - each will day that the work of the last was terrible and that they can do it better! At least, that’s been my experience. I’m having the same issues now - the IVF clinic are telling me my only option is to continue PGS testing until I find a normal embryo, but Dr S doesn’t really believe in IVF. I’ve become more and more stressed on this journey with all the conflicting opinions and now I’m weirdly taking comfort from the fact that there’s no ‘right’ answer. You just have to go with your gut. In my opinion, the NHS are too cautious in their approach. At least Dr S is willing to do something to help. Plus, I always think that if there’s no harm to the foetus then why not take the drugs? My IVF clinic are also dishing out Humira, Prednisolone etc, so it’s not just Dr S. I would just go with your gut, but I’m sorry to hear the doctor upset you. That’s not on. x

@Everhopeful35 oh no! It’s so sad that that’s their mentality 😔 yeah I got the impression that Dr S wasn’t the biggest fan of IVF but he couldn’t tell me what else we could try given superovulation is hit and miss with the results and I still haven’t fallen pregnant therefore haven’t been able to test his immune protocol 🤷🏻‍♀️ Tbh I think the whole conversation was worse over the phone as me and my husband just sat looking at each like WTF is he really telling us the only shred of hope we’ve had these last 18 months is completely pointless and unproven 🙄 I’m preparing myself mentally and going with a list of ‘things I want his help with’ for our face to face appointment in 2 weeks. So much extra stress that we just don’t need xx

That's exciting @LookingforAnswers86 please let us know how you get on. Mine is 2 weeks today. I listened to a podcast with Dr S earlier and it really cemented my decision to go and see him. He also briefly featured in a channel 5 documentary on miscarriage last week.

I'm very sorry about the bfn @Wishing5tar ❤️ I'm sorry you had a distressing appointment. I struggle with the nhs views - there's so much disparity on the way services work. I could get pred prescribed by Tommy's Coventry but not birmingham (who I'm under). Plenty of ivf clinics are using pred too. I'm sorry you were made to feel that way today. Lots of love xx

I hope every one else is doing OK.

Yes, first one!

@Wishing5tar will you have to wait longer then if you want IVF? Hopefully he will review your case and change his mind. Also if he disagrees with it...could you keep it on the low if you want to do Dr S immune plan too? I kind of think the NHS and public hospital system here are a bit behind in terms of accepting new things and protocol and also I dont think they have the funding even if they do believe....maybe I am wrong but that's how I feel :)

@everhopeful35 agreed with both of you, it's so hard to decide what's best when different doctors have different approaches and thoughts...

Remember I said before my doctor in Ireland did NK testing but then suggested IVF even though I had barely tried out the immune protocol ...I felt like he didnt really believe in it or he wanted to suggest the best option in terms of profits for him...Anyway I just finished De Beers book and believe them success rates dont lie :) and I want to go to someone who really does believe in immune issues and is confident on trying to fix them so I am putting my faith in DR S.

@VenusStarr Great, we can compare notes! It's good having something pencilled in - it keeps me a bit more sane 😂

Definitely @LookingforAnswers86 it felt good to do something practical by sorting my notes and sending them over and having a focus. I'm putting my faith in him too ☺️

Hi @LookingforAnswers86 that's so shitty. Sorry you were upset by insensitive Dr, I think they are far too common. I have an NHS consultation for rmc soon too, and wondering what they will say/if I should even mention Mr S? Do you or anyone else know what tests to ask for (any areas Mr S doesn't investigate ??)

Hope everyone else doing well x

@whyisthistakingsolong I have been to two doctors here. One public and one private ( set this up after MC 2) and I have been honest with the public hospital consultant re immune meds - I dont really need her on my side and am not relying on her for anything so I felt sure why not. She actually was alot more open than I thought and said she believes in immune issues and also would consider hydroxy etc which I was surprised about. With the private guy, I have another appointment with in 3 weeks, I might need him for prescriptions so I dont want to insult him by telling him I am going to see someone in the UK but I also would like to take meds after ovulation so may politely say re Dr S methods/ debeers and it being something I'd like to do....so hopefully he will agree. In terms of tests I've done here, off the top of my head blood clotting ( APS, Factor V Leiden, Protein S and C etc), MTHFR, thyroid (TSH, antibodies), our karotyping, FSH/ AMH, immune testing (ANA, NK cells), vitamin D - I am guessing Dr S also recommends alot of these. I may have forgotten some too :) . Good Luck, every additional appointment is good I think, you can always pick up something new...hopefully!

Hi everyone just to let you know scan went well measuring 8wks 2days, ☺️

Amazing news @LRL12 💛

Congrats @LRL12 ! That's great news! :-))

Good luck everyone with first appointments with Dr S. xx

Amazing news @LRL12!!

Ladies, I wonder whether I can get some opinions on our situation please, as I'm so anxious at the moment and not sure what to do. Since the massive IVF failure/all embryos being abnormal, we've had a follow up with the clinic and they advised us not to try naturally because of a high miscarriage risk. But they also say it could have just been bad luck and can't really put forward a reason as to why it happened. Even the genetic counsellor wasn't that helpful. It feels like we're beyond medical science at this point. We've decided not to do any more IVF until the new year because I just don't feel strong enough and need to give my body a break. But I'm about to ovulate and my husband and I have thrown caution to the wind the last couple of nights and tried naturally. Now I'm panicking that this was the wrong decision. I'm not yet on Dr S's full protocol - we've finished the first course of Humira (taking the blood test next week to see if levels have gone down) but I'm not taking steroids or hydroxy yet. Was this totally reckless? I'm so confused that I don't know what to do next 😔

Fabulous news @LRL12 ☺️ have you got another scan in 2 weeks?

@Everhopeful35 I'm sorry you've not had support from your clinic. Is the plan with Dr S to get the blood test and then go onto his protocol? Could you call crp to speak to one of the nurses? I think if you're feeling anxious, maybe not continuing to try this cycle as you've not ovulated yet. Try not to panic about it xx

I had a letter for an appointment with Professor Quenby in Coventry for the end of November (my GP referred me when it was clear my last pregnancy was ending). I'll have had my results from Dr S by then but I'll be able to compare their opinions on why I keep miscarrying as nhs tests have found nothing and we've just been told to try again and hope for the best. I don't think Dr S will say that.

Great news on your scan @LRL12 :) We're about two weeks ish apart.

@Wishing5tar I wrote a big feminist rant on here in your defence earlier but stepped away from my computer because I am a bit hormonal at the mo! I think what I wanted to convey was you should do what you feel is right because it's your life and your body and your money. That NHS doc has no right to make you feel bad and personally, I think he's ill informed about the evidence base for these treatments. I think you are allowed to make informed choices and you've done that. I'm sorry he upset you - that is not ok. The fact he was doing that with the intention of helping you is further evidence of how wrong docs can get it.

@Everhopeful35 - don't beat yourself up about having some sex for fun my lovely. How rare is it that we get to do that these days? Plus, it's done now and wouldn't it be wonderful if that worked out for you? Goodness knows you (and many other ladies on here!) are due some good luck. As you've highlighted, science and medicine don't really know as much as they claim to know. I think there are only few things we can know for sure about this process and forgive me for assuming here but one of them is that sex with your husband is good and you needed some care free time for a few days. Do what you both need for yourself right now - your wellbeing is as important as a treatment plan. We're human after all xx

@Everhopeful35 I am so sorry you are having such a terrible time. As the other ladies said, please dont beat yourself up for trying this month. I would suggest if you want to be extra careful to phone the crp clinic and ask them to prescribe you the hydroxy so that you can start taking it just in case. It wont give you any side effects (apart from hunger, I think, I put on some weight after using it for about 6 weeks).
@Wishing5tar so sorry you need to deal with NHS skepticals. It has happened to me for a long time. I was due to have IVF on the NHS just when the lockdown happened. They never considered I could have any immune issues. We dont qualify for IVF any more because of a natural pregnancy we had in the lockdown, which also ended in miscarriage. I was sad to be disqualified for IVF on the NHS, but glad at the same time, as I dont know how they would have reacted to Mr S protocol. I'm going to start saving for IVF abroad, in case natural conception doesnt happen. Thinking about Serum in Greece.

@LRL12 I'm so pleased it went well today!

Good luck to those of you working out where to go next. I hope you can agree on a plan that gives you some hope for the next steps x

@LRL12 congratulations! So happy for you that things are continuing to go well. You are giving us all much needed hope!

Good luck ladies having your first appointments soon. What Dr S does is controversial to some but it also makes a lot of sense and he is doing something which is more than most do unfortunately!

@Wishing5tar sorry your in this situation. It's difficult when Dr's/Consultants give conflicting info. My nhs consultant doesn't totally agree with Dr S but has told me to have faith in him and give his treatment a chance. At the same time he told me to be mentally prepared and that it's 50-50 😑 he is ok with the steroids, hydroxy etc but said there is no evidence re Intralipids but would support me if I continued with them if I was to get a bfp.

Good luck to those who are seeing Dr S for the first time, although I've had a mc on his plan I'm still hopeful. Those who are also seeing Prof Q be prepared she will not agree with Dr S at all. It totally confused me as I saw them a few weeks apart.

@LRL12 congratulations, glad your scan went well today :) xx

Hello All,

Congratulations to those who have had bfp's and scans that have gone well, keeping everything crossed for you all.

I had a follicle tracking scan today at day 8, was reluctant to have it on day 8 but was told Dr S doesn't work on Friday and that Monday day 12 may be too late. I said to the nurse over the phone that I do usually see him day 11 to 12 but it was today or never basically. Anyway only had 2 follicles one on each side at around 10mm. Dr S agreed day 11-12 is better to scan as he doesn't know whether these will become dominant or not so I feel like it was a wasted appt and a few hundred £ down the bin too plus a 8 hour round trip!
He's given me the trigger to take on day 14 which is a week today! I'm on g-f and he reduced the dose this month as I over stimulated last month so hence why I said to the nurse I don't think day 12 will be too late o don't ovulate til day 14-15. I'm really pissed about it!
As I was leaving one of the nurses asked how it went to which I replied 'not good and next time I'll go with the day I want to go with' - I know it's not their fault I've had a shit response but at least if I had the scan on Monday I'd know where I stand.

Hello, I wonder if I can join this thread please as I’d really like some advice/support?

My background is that I have one wonderful DS aged 2, but this year have had three miscarriages at 10 weeks (Feb), 6 weeks (May) and a chemical. I went to see Dr S in June who diagnosed very high NK cells and off the scale activity.

I started on hydroxy and intralipids but my levels got worse not better so, after a short break from trying in August (everything hit me that month and for my sanity I needed some time out), we started again in Sept using pred, hydroxy, intralipids (and all the other usual additions like aspirin and cyclogest). We also did superovulation that month given timing/ my age (39 next month).

We had success and I fell pregnant - I should be around 5.5 weeks now. But tonight I’ve been bleeding and had tummy pain. I know there’s a chance it might not be a miscarriage but the signs are very familiar.

I went to A&E who basically did very little except confirm they don’t think I’m at immediate risk of it being an ectopic pregnancy so told me to go away and see what happens. One of the nurses said “what will be will be” which I find to be one of the most insensitive things a person can say to someone going through miscarriage (she’s basically saying that it’s meant to be that I could be losing my fourth baby this year alone...) :(

So now it’s really late and I can’t sleep worrying about what’s happening. I thought we had found our answers and had some hope but now I feel like I’m going back to square one and it’s crushingly upsetting.

Has anyone else on Dr S’s plan had a miscarriage and/or know what he recommends doing next? I’ve sent an email to the office to let them know what’s happened, but I see from a post above that he doesn’t work tomorrow :(

Thank you - and also hello! Sorry it’s a depressing way to join the group, but I know none of us want to be here really! X

@Rebecca9876 so sorry you find yourself here and are in this situation. Dr S is working today, he told me yesterday he's going in to clinic for a few hours but a day wouldn't have made much difference to my scan.
Try calling the clinic and she what they suggest. Fingers crossed for you x

Thank you @Mini82 - you are right thank you, and he has been able to fit me in a couple of hours’ time so am now just waiting... x