Immune /natural killer cell treatment when ttc or pregnant (aka the 18th pred thread!)

[Hula2]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

Anna I'm on the high plan which sounds the same. I think it's the regularity of the intralipids that changes. I only had them once at 6 weeks.
If you want IVIG then push for it, at the end of the day it's your body and your money. It is very expensive though. Maybe having more frequent ILs will be enough. I'm sure he knows what he's doing with you Hun. But I know it's worrying knowing wether you're doing the right thing or not

Anna, I was in the complex plan and had intralipids every 4 weeks, like you my cytoxicity was high at 38%.

I did have a mc on the treatment at 5 1/2 weeks and I'll never know if it was the NK cells or something else. I then had another drug called hydroxy added to my plan and I had my little boy 11 weeks ago - who knows if that made the difference or not!!

Although it's hard, I think you must keep in mind that the treatment may not be the answer every time, there are other reasons for mc to happen that the drugs won't orevent but by doing the plan you are giving the oregnancy every possible chance you can. Also ivig is about £2k a time vs intralipids which are about £300!

Hello all,

Hope everyone is well :)

I'm starting the pred regime this week for the first time - excited...but have been telling my husband to let me know if I turn into the incredible hulk!

Annaif - sadly I think my GP is going by the old guidelines (there is a school of thought that tsh levels between 5 and 10 shouldn't be medicated). Dr S's clinic can send me a prescription but I have to pay for it. I think I might have to look at moving GPs in the long run. I feel better than I have done in ages so the levothyroxine is doing its job! Yup, I have hypothyroidism but my dose was taken down to 25mg last month as my TSH went from 6.7 to 0.23 in 4 weeks! :)

Snoopy, I'm probably a bit late now as it seems your work have got their act together but am happy to assist from a hr advice point of view as that's my background :)

Wishing everyone a great week x

Hello, congratulations to everyone who has had good news!

Can I ask if any of your partners had the sperm DNA fragmentation test? I did Dr S's super ovulation plan for 6 months with no luck so decided to move on to IVF. At the initial appointment, they suggested the DNA test due to the miscarriage history and it shockingly came back as being far too high. I thought I'd mention it in case the people on here who still haven't had success have looked in to it. I thought with the high NK cell diagnosis for me we had it sorted but obviously not.

Hi tea,
Sorry you've had yet another knock back . What have they said regarding your result? What is the next step? Must be hard when you set your mind on it being one thing and then some thing else is uncovered.. Sending you big hugs

I've just had my NT scan, thankfully everything seems fine. NT measurement was 1.2mm so that's a relief. Just got to wait for the combined blood test result....

Hello Tea! I'm so sorry to hear about the fragmentation results. I certainly considered it after we came back clear of balanced translocations. I believe Trying talked about getting it done but not sure if she ever did... It's certainly not mentioned often but it does make so much sense with RMC. What does this result mean for IVF? Would ICSI be used to overrule it perhaps? Are you starting soon? So hope that this has been your missing link and you can use it to find your rainbow.

Seeking- CONGRATS!!! Yay yay yay! Another incredibly important milestone. I know I was sick with worry waiting to hear back about my blood results, but a good NT scan is such a great indicator of things!! When do you hear about bloods?

She said 2-3 working days so hopefully by the weekend Drttc. Such a relief....

Hi tea, so sorry you have bad news. I'm sorry I don't really know anything about sperm fragmentation. Does your clinic have a plan to overcome this?

seeking massive congratulations! That's such a big milestone to reach. How are you feeling? I'm glad I went private for the nt scan, had the bloods taken the day before so the results were ready five minutes after the scan. I probably would have burst with the anxiety otherwise.

karryk thank you for the kind offer. I think I have cracked the work problem. They've finally put my reduced hours on the system and I think I'm starting may leave on the 3rd may.
That's good news that your tsh has come down so quickly. Would you be able to see a different GP at the surgery?

Seeking- hope you get your results as soon as possible to ease your mind! It's going to be perfect :)

Snoopy- glad you sorted your work hours! Now the countdown begins...

Question: Have you been overly sensitive about things as pregnancy progressed? I know it's a stereotype that pregnant women are hormonal but I feel like blaming hormones is cheating... In the last week I've had two (secret) crying fits over family in law issues (sister and her partner) and I'm wondering if I'm the one out of line because of hormones?!

Thanks Drrtc
And thanks Snoopy
Glad work have finally sorted your hours out... About bloody time!!!
Karry - sorry I missed your post - fab news that your TSH has come down so much and so quickly. That's fab.

I would t say I'm overly sensitive at the moment... So maybe the hormones just haven't kicked in or I really am a hard faced cow! Lol!
But if things are upsetting you, they're upsetting you. Hormones or not. You can't help how you feel sometimes

Thanks Seeking! Had my first ugly cry around 19 weeks... Tell me how you get on with this please It's more that I feel extra hurt/sad about perceived snubs. Whereas usually I'd be like 'Well screw them!!!' now I'm like 'wahhhhh why won't they love me!!!' Lol. So. sad.

Hmmm I don't know if I've been more hormonal... But then DH would point out that I cried at the Amazon advert with the little horse who has no friends haha

Just popping by to say so pleased to hear the good scan news for Seeking, Drttc and Tumtimes, so happy for you all ! And can t be too much longer for you Snoopy, can t wait to hear of the next pred baby's arrival.

Waves to everyone else and good luck to those starting out on treatment.

Trying in case you're reading, hope you re doing ok, still think of you.

Haha awwww Snoopy!!!

Hi Hula- Thank you and so nice to hear from you! Hope the family is doing well and DS is behaving ;)

Trying- I second Hula's comment. You're always on my mind and I really hope you're doing well Hun x

Hello, hope this is the right thread, I am new to all this! A little about me: TTC since September 2013, diagnosed with hypothyroidism August 2014 with a TSH of 30.1!! Sine then went through all the tests and diagnosed "unexplained." Went through my one and only NHS IVF and had a chemical pregnancy. It was all a bit of a nightmare due to the rather unsympathetic consultants who just kept telling me I was old (37 at the time, 38 next month) and it was my eggs (even though three made it to blast stage.) Went to a private consultant at Care Sheffield who advised to get Anti TPO antibodies which I have just got the results back for. Mine are 1300 which I am led to believe (having excessively googled today) is very high. Thing is, the consultant said that the treatment for this would be IVF again with steroids for the first three months of a pregnancy if this was successful. I asked could I not just have steroids to try naturally but he said no as it's pretty bad for you.

Does anyone have experience of this? I feel a bit lost with it all actually, though in some ways slightly more positive as perhaps this is a step in the right direction (felt that way when my thyroid was diagnosed mind you, and here we still are...!)Really grateful for any advice, or if I am on the wrong thread directions to the right one. Thanks in advance....

I should add to the above message, my throid was dealt with after diagnosis and treated and now TSH sits at 0.41 after bouncing around a little bit between this and 1.1

Hi Jenbot,
Sorry you find yourself here and I'm really sorry to hear of your chemical after the ivf. It really sucks and it's definitely not any easier when you have unhelpful medical professionals around you.
Regarding your plan, ivf with steroids sounds like a reasonable approach... The way a lot of us are dealing with our immune issues under Dr Shehata is a 10day course of steroids from ovulation. Then test. Continue to 12 weeks if bfp or start the process again if bfn. And the. Depending on severity of immune issues Intralipids are used also. Lots of success over the life of the thread.
I thinks it's perfectly acceptable and reasonable for you to try naturally for a few cycles at least before you try ivf again. Hope this helps

Thanks everyone. Our consultant has referred my husband to a urologist and our cycle has been put on hold. Really upsetting as in my mind we had it sorted. Hopefully they can fix it but Google has terrified me.

Jenbot, sorry to hear about what you've been through. Its such a mind field trying to figure out what causes things to fail. I'm afraid I dont know what the antibodies you mentioned are but hopefully someone else will.

Can I ask how many eggs they retrieved during your IVF cycle?

Hi, thanks for that. Do you mean that Dr Shehata is giving you steroids every month while you are trying? I like the idea of not having to go through IVF as the next step. I googled her and saw that she was for recurrent miscarriage, I haven't had that (sorry for all you women here who have) just the one time chemical pregnancy through IVF. We retrieved 10 eggs in total. Sorry to hear that your cycle was cancelled Teakind

Hi hula, good to hear from you. Hope both you and all the family are well. Not long to go now! DH packed a hospital bag for baby today. So far my bag is empty because I'm lazy haha

drttc its ridiculous isn't it! I've also noticed when DH is on lates or nights and I put the dog to bed in his crate by myself I get a bit tears giving him his kiss and cuddle goodnight. I used to be so hard

Hi jenbot. So sorry to hear everything you've been through, I bet you felt awful with a tsh that high! I don't know about the antibodies you have mentioned but those of us on dr shehata' plan use steroids monthly and after bfp and very few of us have problems with them.

teakind so sorry you now have something else to worry about. Try not to google too much, I know easier said than done. Even if there were a problem there are things they can do.

That should say teary not tears

Step away from google tea ** its the devil! Fingers crossed the urologist can help things for you.

Jen his main speciality is recurrent miscarriage but lots of people see him after numerous failed ivf cycles as immune issues can effect implantation and ultimately getting pregnant to begin with. Yes we have all take the 10 day course monthly. Personally I've been on them now for about a year. No massive issue except now I have major moon face and increased appetite which should both sort themselves out now I'm weaning off.

Hi hula hope you're well and enjoying motherhood. How's little man? X

Hi everyone, it seems that every time I don't check the thread for a day or two, there are LOADS of new messages :) Hope all is well with the expecting members, so good to hear that your pregnancies are progressing well under the S plans- gives me hope for the future!

Tea: I am really sorry to hear about this new spanner thrown at you, but overcoming the first shock, surely it's good that you were made aware of the situation and that it's something you can work on?
I am not familiar at all with fragmentation but would quite like to know about it (afraid to ask Dr Google in case it freaks me out!)
Can men with other living children experience sperm fragmentation issues? Is it an age/genetic thing? Hope you get some results soon so that you can get back on your initial plan hon.

Jen hi! Another hypothyroidism/high anti TPO's buddy here :)
Mine are not quite as high as yours but I am still in the process of regulating my TSH (hasn't moved in 3 months of being on 50mcg of thyroxine- currently at 5.6 and will check again on Saturday, after doubling the dose to 100mcg for 6 weeks now)

Could I ask please why it was suggested to go to IVF after being diagnosed with hypothyroidism which appears to be manageable? The reason I am asking is that it is generally regarded as one of the reasons of "unexplained infertility" so if your TSH has been regulated, why didn't your doc suggest trying again naturally?
Is it because of the high level of TPOs? Because Shehata would treat those with steroids (he's putting me on prednisolone just for the management of my antibodies despite having low NK's)

I have heard a couple of success stories from personal friends, all of whom went to ARCG (under Taranissi's care who allegedly is Shehata's teacher/mentor) for immunology assisted IVF after numerous failed IVF attempts at other centres (all at very early stages such as your chemical).

Once they got their NK's and antibodies in check by taking steroids after ov whilst trying naturally in parallel they managed to not only get pregnant but to take a live baby home with them! So in the end although they started off with the intention of imminent IVF after steroid treatment, it was deemed to be unnecessary once their immune issues were managed.

That gives me huge hope as I've also got a history of 3 mmc (one at 20 weeks), turning 40 in May and recently diagnosed with uNK's (Coventry) and active NK's in a pregnancy state of being (Shehata). We are lucky enough to have a 4 year old boy (without any complications bizarrely enough) so I have spent the best part of the past 2 years trying to figure out what has changed since then (apart from me being closer to 40) and I keep losing babies now ...

So I will have steroids, heparin, progesterone and everything they will throw at me once we start ttc again- hopefully not long now, just hoping to get some lower TSH results this month

Good luck hon x

Hi Anna, thanks so much for taking the time to reply to me. It is a total minefield and hard to know what to do for the best! I don't know why they decided to push me towards IVF, maybe because of my age? I honestly had such a difficult time with Leeds Centre for Reproductive Medicine, wanting answers but never really getting them. And of course it is really tempting to go for it with the thought that IVF will bring you a baby when you have been trying for so long!

They banged on about my age all the time which I think was the rationale for IVF but I now realise that is a total cop out!! Great hopeful stories from your friends, great that you shared them. Sometimes difficult to see the light at the end of the tunnel!

So your friends who went to ARGC didn't have IVF then? Just got treated after OV? That sounds great. Obviously if I need to I will go through IVF but really would love to avoid it if I can!! Where do your friends live and did they need lots of appointments? Questions...

Sorry to hear about stubborn TSH, does your GP know what reference range you need to get to for TTC (under 2)? Sorry if teaching granny to suck eggs...

I do find the whole thyroid thing quite frustrating as it appears to be quite a complicated area of medicine and not well researched either!

Hey Jen, my pleasure hon.

My GP is freaking clueless!! It was my endocrinologist who detected it (paid privately through my insurance as I was unhappy about having found thyroid antibodies in my blood results at St Mary's but nobody bothering to put me on anything for them after 3 mc's) and Shehata who insisted that it really needs to be below 2.5 if we are to ttc again. Once my repeat bloods came back (through the NHS) my GP phoned to say that my results were not alarming, borderline ok so no need to change anything (the TSH was still unmoved at 5.6), so when I pointed this out to her she said, well in this case I won't object to raise your thyroxine to 50mcg - which I was already on- and when I pointed THAT out to her, she goes, well ok then we can raise it to 75 or 100? Whatever you want (!!!?? wtf??!)

So now my thyroid management is also with Shehata with the odd intermediate test through my GP.

My friends all live in London, where the ARCG is based. It has top IVF success rates in the country but also deals with patients with autoimmune reproductive issues who need to manage them as part of naturally trying to conceive (without necessarily progressing with IVF).
They will do the Chicago NK tests (also done by the Lister clinic under Dr Thum who's another specialist with excellent reputation) and Dr Gorgy (also IVF specialist who deals with immunology issues). They are all based in London I'm afraid and they are all highly expensive (but then again, IVF is also a very costly process)

My friend from work had been ttc for at least 3 years before doing a round of IVF under the NHS which ended up in a chemical. Then had another 2 failed IVF attempts in Slovenia (where she's from as it's cheaper there) before taking a pause to see what to do next. They were about to give up when they read on Taranissi and his very "unconventional" but highly successful method of work and his high IVF success rates. So they started off getting checked by him for autoimmune issues, with the intention to do IVF with him once she was on an immuno-suppressant treatment plan. 2 months into steroid treatment from post ov, she magically conceived naturally for the first time in her life (and at 41 years old if I may add) and they had their little girl last Jan (they were due the same week as my 20 week mmc little boy was due sadly )

Shehata's approach is very similar in that he checks for NK's first, then puts you on a treatment plan depending on your results and re-assesses you every 2/3 months if you haven't conceived in that time. Another lady I know from a similar facebook support group under S's care who is now 44 is in a super ovulation treatment plan currently. So there are ways around ttc naturally before embarking into further IVF attempts- and you are still under 40 so it's not that you've got numbered days!

But it's best to discuss your personal medical history with an immunology specialist who is knowledgeable in hormonal/thyroid imbalances in case it is indeed IVF which would have the maximum chances of success in your specific case.

It's very diff hon, nobody seems to have the one magic answer but we're all ploughing through it.

Also forgot to mention that my thyroid issue was caused by Hashimoto's which is an auto immune thyroid attacking condition. I will never know if I had this the whole time and whether this was the reason for my losses it was un-diagnosed or the other way around (that the rmc's have caused havoc to my immune system and my thyroid as a result)
xx