Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

Hi all,

Not sure if anyone is still around on this thread? I am a mr s patient and was put on the complex pred protocol. I got pregnant in January cycle and it was my first pregnancy on the protocol and I am now miscarrying. I am just looking to speak to anyone that had the same experience and wanting to know what happened next with regard to your treatment with him? If anyone can give me any info of their own experiences it would really help me, I was so certain it was going to work and now I feel lost

Sam xx

Hi @Samcat237 im so sorry to hear about this, seems so unfair to suffer a mc on the protocol as it seems to offer all the solutions.

Will you be able to get this one tested to see if that can shed any light on the cause? What kind of mc have you had and how many? If it's your third or more then the NHS should test it for you, otherwise you can ask Mr S to do it. It's horrible but if you've had a natural mc it's worth trying to retain some of the "products" if you can as it could just be an unavoidable chromosomal loss and nothing to do with what Mr S is treating you for. I'm pretty sure this happened to @Seekingmiracles.

Hopefully Mr S will be able to talk you through it all. He has some alternative treatment options if the pred isn't working for you, but will depend on your circumstances and diagnosis etc. Don't lose hope yet!

Hi @Samcat237 yes, as @harrietm87 said I also had a mc on treatment. I had an erpc at my lol hospital and then got it tested via the lab DrS uses as I trusted them not to lose it and it would have been quicker. Any way the results showed the loss was due to a chromosome issue and would have happened regardless of treatment. So DrS felt confident that the treatment plan I was on would work next time. Which it did. I'm now on successful pregnancy #2.
Really sorry you've such loss, it's even more heartbreaking when in treatment as you feel
Like you'd found the answer. if you can get the tests done it could rule some stuff out and give you and DrS a clearer idea on what to do next x

Hi ladies,

Thank you so much for replying to me I’ve spent the last 20 hours back reading this thread and so far I’m only up to august 2013 ha ha.

I had three early pregnancies before going to Mr S and was put on complex nk cell plan with 25mg pred from ovulation & cyclogest. Also on low dose thyroxine from slightly elevated TSH and he found me positive for mthfr.

First cycle I didn’t conceive but then my 2nd try I did and I got a positive at 10dpo which was the earliest I’ve ever had. My lines got stronger every day and I’ve never had that before, I had my hcg tracked at my local gp and it was doubling perfectly but then stopped at only 5 weeks 2 days. I stopped the progesterone and started to bleed 6+1 I did manage to catch a small amount of product something that looks like the sac or embryo and my local Epau have sent it off for testing for me but were not very optimistic of getting a result due to it being such a small amount of tissue. So I guess I’ll just have to wait and see if I hear anything with regards to that.

I’m travelling down to London this weds to see Mr S for a follow up and wondering what he will suggest or if he’s just going to say it was bad luck and to try again. Did he change yours for the second try @seekingmiracles ?

I just feel deflated because I really thought this was my time and that it was working and now I feel disappointed xx

@Samcat237 because mine was confirmed as chromosomal there was no need to assume the need for a tweak. To be honest all the protocols are the same in terms of how much pred. The difference is the frequency of intralipids.

Hopefully when you see him next he'll be able to offer some other advice. I think had we not got a confirmed diagnosis we'd have just had to try again and hope for the best. Which is not much help, but Without being able to rule things out, that's all you'll be able to do. Sorry I can't give you a more definitive answer lovely

Hi ladies
I have just joined netmums after a couple of years of just creeping on the forums and never posting anything
Well I have decided to join now because I found your threads and even tho I have only read a fraction of your amazing discussions I have decided I want in! You all sound awesome and this is definitely the kind of community I need. All my gfs are pregnant or not trying for a family yet...

My background
I have one daughter 16months old- conceived easily, naturally - all smooth sailing so was not expecting the next phase of this journey

In August 2017 had early MC AT 5w6days
Then in December 2017 had MMC discovered at 12 week scan- stopped growing at 9w4days followed by ERPC
didn't have a period after that and inadvertently had managed to conceive straight away - we wanted to wait a few months after the ERPC but anyway we thought it was a blessing until last Friday, March 2, discovered another MMC. We saw strong heartbeat around 6weeks and then it stopped growing at 6w5days. And I'm in hospital tomorrow for the second stage of the mifepristone thing...
Eugh

Anyway
I am 36 in April and have always dreamed of having 3 children
So I am trying to decide what to do next?!

Do I just go to gp and get a referral to my local recurrent miscarriage clinic?
My fear is that waiting times are long and their testings are incomplete
Or do I just go straight for the kill and book myself in with dr S?
Or do I opt for dr quenby?

I have already booked my OH in for a SpermComet test- I am convinced it's because of his smoking habit!
And my gp has already agreed to test my hormones - but not AMH- is this something the Nhs just doesn't do?

What other tests can I convince my GP to get for me on NHS? I would rather have as much done for free and bring it to Dr S rather than have him do everything for £££

Any other advice for a newbie starting on this journey would be welcomed!

Thanks

Hi all,
Welcome to all new members.ladies here lovely and helpful through tough times.
Iam 30 weeks,everything ok.

@harritem 87 how ru? Thanks for suggestion .i had anti D last week.
@ poppy,how ru and any updates.
@justla,@ seeking miracle hope you are nearing your due date?

@Zarala sorry for loss , my gp was very helpful.i had hormonal ,blood clot,vitamin d,Amh test.according toNHS,if u are 36 years,consultant appointment should be given in 2 months time.i had dye test,scan by consultant.all test are normal.referred to DrQuenby clinic for nk cells.i got appointment in two months time.meanwhile,i got appointment Dr S ,treatment plan undergone 7 months,got pregnant.
Dr quenby test checks only nk cell uterus.if it is normal,they gibe aspirin,progesteron pills.
Dr S test fullwhole body nk cells.

@samcat237 sorry for loss.Dr s treatment plan is very effective for many women here.hope u get well soon and go through successful pregnancy.

@Bala03
Thank you so much for your advice

Hi @Bala03

I'm in for c-section on Tuesday!!!
@JustLa had her baby!! But I'll let her share that special story.
How far are you now?

@zarala - get all the hormone ones and blood related ones you can on NHS. They should do a full thrombophilia screening for you. But this is normally done at the local miscarriage clinic after a referral from GP. It'll save you some money if you do decide to go to DrS.
Sorry you've not had an easy journey so far 😞 But there is so much knowledge within this forum and the ladies are so so supportive.

@Seekingmiracles thank you for your advice
My go has agreed to test my hormones for me. I will ask her to add the thrombophilia one. Do you know how long it usually takes to go to the RMC Clinic? Dr s can see me end of April. I'm really hoping I can have as many tests done before then!
All the best

Hi everyone, I haven't been on here for ages and I have missed so much. Glad to see old timers like Seeking and Harriet still going strong and posting positive updates.

@Bala03 - 30 weeks! How wonderful! I am so happy for you and remember the start of your journey very well.

@DrTTC are you still out there?! I'd love an update!

Sorry to hear about your losses SamCat and Zarala. Glad you've found this wonderful supportive thread and you're getting the medical help you need.

As for me, recently turned 36 and still TTC No 1 after two MCs just over a year ago. I had several failed cycles while taking Pred full time. I'm not with Dr S and my specialist had recommended I take 5mg all the time. I never had a BFP on Pred so I've come off it and will try this cycle taking it only after I ovulate. I've had a lot of blood tests and scans done and everything has come back healthy! Fingers crossed now xx

Hi @PoppyJ1 ! Do you feel like you may have any underlying autoimmune issues? Going gluten free was a game changer for me and I really feel it helped calm my immune system.

I forgot my password and hadn’t logged in for ages!

Hope everyone is doing well :-)

I’m 38 weeks+2 today... Chugging along! Few Braxton Hicks here and there and got some lightening Crotch last night But baby girl is still baking! We’re pretty much all ready for her arrival (finally) so trying to relax and rest in the meantime!

Oh my goodness @Seekingmiracles has had her baby by now?! How are you lovely?

@harrietm87 - what about you?

@zarala - I honk I waited about 8 weeks to see my NHS rmc consultant. And then had various tests and then another couple of months for results. It can be a slow process but it all depends on where you are I guess. Seeing DrS would def speed things up. But also cost a small fortune .

@Drttc you're so close!! Hope all goes smoothly!!
Baby Roman decided to make a slightly earlier than planned appearance on Mother's Day
He is amazing and once I again I feel incredibly lucky! Life is very hectic at the moment and we're still finding our feet a bit but I am so so happy.

@Drttc great to hear from you! I've been thinking about you lots!

I'm just behind at 37+4, finishing work tomorrow - cannot wait. Still feeling pretty good and no sign of the baby yet! Don't know the sex so excited to find out. You have to let us know when your little girl arrives!

@Seekingmiracles
Wow congratulations on the birth of baby Roman! What a gorgeous name!!!
Enjoy these moments they go so quickly!

So I have decided that I need not rush everything and I'm taking a month or so to just recuperate and not even think about all of this before seeing any specialist

I was recommended Dr Thum and Professor Mark Johnson - but based on everyone's admiration for dr s I think I will stick with him. I pushed out my appointment with him until June which also means I get to see him in London which is far more convenient
My acupuncturist told me I should wait 3 cycles before conceiving as my Xi is very tired (lol) so... we will see!
Hoping acupuncture and yoga will see me through these 3 months before I get on the baby making game again... hoping the tests all come back normal now, whereas before I was really hoping for a reason!
Funny how time can change things...

@Drttc Thabks for the top. Worth thinking about perhaps, but I’ve never had any indications of auto immune problems. I have an endocrine condition that messes with my hormones and so far that is being treated as the cause of my MCs. I’m pretty sure the Pred has been the problem conceiving because I stopped getting BFPs as soon as I went on it. Hopefully taking it from ovulation instead of all the time will help x

Obvs meant to say thanks for the tip 😂

Hi Ladies,

I have been really interested in reading your comments and feel very encouraged about reading some of the stories. I never usually write on these things but when I saw the thread I felt that you ladies might be best to guide me.

A little about me I have had two early miscarriages this year. One at 6.5weeks and another shortly after at 5 weeks. First time I thought I was just unlucky and was very positive about trying again. However, after the second time I am full of anxiety. I have a history of arthritis and would have a lot of allergies and through my hours of research online I came across Dr Shehata. Only that I know my history of autoimmune issues I probably would keep trying and hoping for the best.

My GP has been very good and has offered to refer me to RMC and will be completing blood tests. However, I am not sure how long this will all take. I feel that Dr Shehata might be my best option to go private and to have the tests and a bit of peace of mind. My husband is not overly keen and whilst he is supportive thinks I am just throwing money away. However, given my history I am convinced that the issue is my own immune system.

I have emailed Dr Shehata's clinic to enquire about waiting times? Would Dr Shehata accept tests done by my GP? Can anyone guide me on a typical overall costs I can expect to pay?

I'm sorry to bombarde your thread with these questions it's just I feel that unless you are in the situation it is difficult for anyone to offer me advice.

Thank you in advance x

Hi @missaq

Mr S will accept Gp tests if they have been done within 3 months but the nhs don’t offer all of the tests that he does. I had full testing done with him in December and it cost £2300 with the cost of the consultation.

You can probably get your thyroid and thrombophilia testing done with your local rmc but you may be waiting a while for that.

I have read back through all 21 threads of this forum recently it’s like a novel... but so many success stories it gives me hope and I do have confidence in his treatment plans.

Unfortunately I have had one miscarriage on treatment but I don’t know if it was just bad luck! I am now pregnant again straight away so will see how this one works out....

Good luck xx

Hi @samcat237,

Thank you for getting back to me and congratulations on your pregnancy. Fingers crossed you will have your little baby. I can't believe all the success stories of Dr Shehata, they are definitely reassuring.

Can I ask how many miscarriages you have had? Did you have any testing prior to Dr S? People keep telling me that two miscarriages can be bad luck and to try again. But I am so so afraid to without the testing and knowing my history of immune issues I feel there is a clear link with the miscarriages.

I contacted the clinic this morning because I am super impatient and they have advised that apt is likely to be middle of June. Which probably will give me time to get some tests done by my GP.

Thanks again x

Hey @missaq

I had 3 early miscarriages last year all before 6 weeks. I did get referred for nhs testing but after a lot of waiting and messing around they discharged me and said nothing wrong with me and to keep trying.

It is true that 1 & 2 miscarriages an be very common and lots of people don’t go on to have more than two .. infact only 1 in 100 go on to have a 3rd or more. Whereas 1 in 4 have 1 or 1. So the odds really are in your favour that it won’t happen again but I do completely understand the anxiety and worry that comes with that for you.

Yes the clinic do seem to book up quite far in advance, but it’s because he is so popular. I think that because you have concerns about previous immune related issues that the clinic would be your best option because it is his specialism. It is costly but it is totally worth it if it works out in the end xx

Hi ladies
So I have decided to go for it and see dr S in May.
Just wondering how long after the first appointment you can start TTC?
Is it after 8 weeks?
Thanks

Zara

Hi zara,

If your seeing him privately your results are around 2 weeks after the initial tests. Then it depends on your results and treatment plan. If you are given steroids then you can try on your next ovulation but if you are put on hydroxy you have to take it for 6-8 weeks before trying x