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Immune/natural killer cell treatment when TTC or pregnant (aka the 14th pred thread)

993 replies

sunnyday01 · 29/11/2014 13:57

Continuing from 13th thread

OP posts:
dildoos · 01/12/2014 18:01

Help I feel insane! 6 days into the pred and I had an urge to poas! So I did and guess what I got. A BFN surprise surprise! Man I have not ha that urge in months and now feel like such an idiot wasting money in it! X

Hopender · 01/12/2014 18:07

Had the scan today at the EPU and while it is massively early to know how things will pan out everything seems good right now. They saw a gestational sac and a yolk sac which was all they expected to see at five weeks two days apparently. I've never had such an early scan so was a little strange! The next one will (hopefully) be in two weeks with Dr Shehata in London.
On another note, I was having a think about the BDing and (not sure if it is TMI) but the times I get pregnant tend to be when we've done it twice a week all month and then on days 13 and 14 but not 12 or 15. It is probably quite a bit less than some of you but it seems to work better that way for us. I do slightly wonder if my DH's little guys are better after a break! I'm certain that isn't the case for most people but might be worth a go in some situations. Anyway, just thought I'd put that out there!

Hopender · 01/12/2014 18:18

Hi Dildoos, it made me a bit nuts too! Strangely I feel better on it now that I'm pregnant than I did before. I know I shouldn't worry about this but I don't love the idea that it makes you put on weight either!
Re the HPT ! I only got a very faint BFP on day ten after about five mins so seems like it is still too early even with the First Response tests. Fingers crossed for good news in a few days time!

dildoos · 01/12/2014 18:56

That's good news hope, take each, day, test at a time and I have everything crossed for you. I may pinch your bding tip and see if works out for us too as dp has little swimmer issues Wink
Xxx

Tryingno1 · 01/12/2014 21:01

Hope glad to read ur good news :). Hopefully u will see a flicker of a heartbeat next week :)
Thanks for ur BD info! For the others I've gotten preg when had 3 days off and gone for it day 13,14,15,16 (ovulate 15). But I've done this for 4
Months and it hasn't worked again! So I'm doing 10,12,14,15 this time with the though the break between 12-14 will do some good?? Sorry I'm getting a little neurotic again.
Should go!
Fingers crossed for u dildoos!

dildoos · 01/12/2014 21:10

Trying that sounds like a good plan, change the routine of bd and see if it's the magic month! Fx.
I do believe it's very hard not to be neurotic about it. I wondered if it felt more so as taking drugs ( not my thing as a rule to take medication other than the obvious vitamins!)? Do you feel the same? X

Tryingno1 · 01/12/2014 21:22

No- I'm just mad! Haha.
I'm not taking any of the drugs this time as felt like a break and the advice no pred after 6 months ttc and I'm month 5 so figured why not! I am a little less mad this
Month though so maybe?!

dildoos · 01/12/2014 22:44

Oooooooo maybe the break will be a shock to system and Tada! Here's hoping Wink every month We need to find another theory , another drug, another sequence and that way we always have something to try!
This month I shall mainly be swinging upside down from the chandelier Grin x

Mel3062 · 02/12/2014 06:48

Hopender that's lovely news.
I had one follicle at 21 and one at 15 day 10 Sunday so triggered last night, hubby away tonight grr! Last months result seemed better so wonder if mr s will up the gonal f again.
Having awful time at mo as mum has been diagnosed with either early Parkinson's or dementia they are not sure which.
I try Dtd every other day from day 7 then maybe 2/ 3 days in a row but my amh and hubby's sperm quality is against us.
Waves to all x

Hopender · 02/12/2014 07:39

I'm so sorry to hear that Mel. I hope they find out what is going on before too long. My friend's mum was diagnosed with Parkinsons a few years ago and she is still very well, but I can't even imagine what it must be like for you. You have been through such a time recently. Hopefully things will be brighter soon and you will have some good news this month, xx

Tryingno1 · 02/12/2014 10:44

Mel sorry to hear about ur mum :(. I hope that she remains well for some time as many people with Parkinson's do...
I hope I get some good news soon ! You had a postive hpt not too long ago if I'm right? Hopefully another will come soon

Tryingno1 · 02/12/2014 11:08

Dildoos ur message re the chandelier made me laugh!! The things we do!

Snoopysimaginaryfriend · 02/12/2014 13:47

Hello everyone.
I'm not sure if this is the right place to post but you seem like the only ladies around here who might know the answer to my question.
18 months ago I was diagnosed with hypothyroidism and have been taking medication but it wasn't until this week when I had a mmc that I discovered it could be caused by thyroid antibodies. No one has ever mentioned this to me and I was always just told take these tablets and it will be fine. All my maternal female relatives have auto immune diseases including sarcoidosis, addisons disease and scoriatic arthritis.
From my own research it seems that a lot of private doctors would prescribe prendinisolone if you have these antibodies but every nhs doctor and midwife I've asked in the last week just stares at me blankly and says they have never heard of antibodies or anthing I'm talking about (despite the miscarriage association running a new thyroid study and posters being up all over epu etc). They classed me as a high risk but then took more than three weeks to run my bloods which only ended up being sent to my gp the day I knew it was over.
Am I being over cautious? As one doctor said 'asking questions is of no clinical benefit'. But if I'm lucky enough to get pregnant again and have a second miscarriage I will always think what if.
My husband thinks we should just go private, what would you suggest and do you have any experience?
Sorry again if this is the wrong place

Snoopysimaginaryfriend · 02/12/2014 13:51

Maybe I should add that I am 29. I had the symptoms of hypothyroidism for a decade but was always told 'you must be anaemic you're so pale, oh no your iron is fine, try not to stress so much'. It was only when I collapsed at work and my mum was scared I had leukaemia which her sister died from that I demanded proper blood tests and was diagnosed.

freelancegirl · 02/12/2014 16:29

Mel. Sorry to hear about your mum too. It must be so stressful and worrying.

Hello Snoopy and welcome to the thread. Yes you are definitely in the right place to ask. I have had a thyroid problem (hashimotos - raised antibodies and under active but on thyroxine) since I was 21 and also had several miscarriages before being treated successfully (I have a 2.4yr old DS and am 35 weeks pregnant) by Mr Shehata at the Miscarriage Clinic. The relief I felt when I eventually found a doctor who understood thyroid issues (as no GP I have ever seen really has) was tremendous. He also diagnosed me with a high level of natural killer cells - something that for some reason is still disputed by other medical practitioners despite it being used by a select group of doctors (most of us on here are seeing one of these) across the UK for a good decade.

The NK theory is that it highly linked to people who have autoimmune conditions such as thyroid and all the ones you mentioned in your family.

In your position you could do one of two things - wait to see you have another miscarriage or get treatment now. Although your miscarriage was obviously awful, it might well have been a one off. I know it's horrible putting yourself at risk of another one but it really could have been one of those normal every day miscarraiges. But then again your history does point to potential problems (note: I am not a doctor!). First thing would be to make sure your thyroid levels are normal now you are on meds. Do not accept 'it's normal' from your doctor as he/she might be working on a narrower set of normal levels. Have a test and then come back and tell us the results! Also read Mary Shomon at about.com for her take on thyroid blood test levels. I would fully recommend my miscarriage specialist if you want to go down the private investigations route straight away too. But see how you feel.

I had technically 'only' had two miscarriages in a row when I sought out the Miscarriage Clinic. I had had two earlier pregnancies though when I was around 19/20 that had also ended in miscarriage so to me alarm bells were ringing. That and the fact that I did a bit of research like you and felt that thyroid issues might have led to high natural killer cells. So instead of waiting for a third in a row I contacted the clinic and got tested. I didn't feel I had time to lose however as I was 36/37 at that point. You are a lot younger. But of course I understand the fear of not wanting to put yourself through another miscarriage!

Snoopysimaginaryfriend · 02/12/2014 18:46

Hi freelancegirl, thanks for such a quick reply!
I'm glad to see you speak so highly about Dr shehata as that is who my husband has booked an appointment with.
My tsh level was about 1.27 when we got pregnant and my gp does actually seem to be one of the better ones in that she is aware of the impact tsh going over 2 can have. But she isn't a fertility expert and is confined by nhs standards. She was very good about monitoring my meds and it was the hospital who dropped the ball on that one by taking so long with the results.
I think my plan is to ask my gp if the nhs will test me for antibodies and if she says no then we will still have the private appointment. As nice as the majority of doctors and midwives I met were I was so frustrated by the blank look on their faces when I asked any sort of question.
We were incredibly lucky and got pregnant as soon as I came off of the pill, would have been a honeymoon baby. We are hoping to get pregnant again as soon as possible (I know they say that this can make dating the pregnancy difficult but if it does happen then I won't believe that things are ok until we have a baby in our arms anyway)
Do you mind if I ask you, did you have difficulties getting pregnant and what were your tsh levels like?

Tryingno1 · 02/12/2014 18:56

Hi snoopy. Sorry to hear of your loss...I hope ur doing as ok as u can...

Freelance sounds like an expert in the field so ur def in the right place!

I don't know much about thyroid issues but with regards to miscarriage

chances are your next preg will be fine (no increased risk with one or 2 miscarriages)

you may end up paying money (a few grand) (not that it matters if u get a baby at the end! But just when weighing up WHEN to chase things.

ending up on treatment you may not need (minor side effects) as the evidence isnt great out there for pred for NK cells..(even though I'm going with it, though its controversial and not much evidence for its use) ..most consultants in uk totally rubbish it anyway.

but then you may prevent further problems looking into it now and you may regret not chasing it all sooner...

.It's a hard one. Good luck with whatever you decide.

I chased nhs tests after 2 miscarriages and then Got told nothing wrong . and chased nk cells after the 3rd.

hopefully things will work out next time for u good luck whatever u decide.
X

Tryingno1 · 02/12/2014 19:00

Snoopy sorry missed ur reply!
Good luck with ur appt with mr s
X

Snoopysimaginaryfriend · 02/12/2014 19:10

Tryingno1 that's ok! The appointment isn't until 19th January anyway.

It's difficult to know what to do.

Spookily the last six months of my life have completely mirrored my mums when she was 27, married in August, pregnant in September and a miscarriage in December. She was pregnant with me by New Years and didn't discover she had psoriatic arthritis until she was pregnant and got a new gp from Australia. Back then there weren't any treatments and she managed to have three healthy pregnancies and always got pregnant quickly. I'm hoping I will have some good reproductive genes to balance out my bad ones haha

dildoos · 02/12/2014 19:40

Evening all.

Mel so sorry to hear about your mum, how awful for you all. I wish her well for many many years to come and hope that the onset of Parkinson's is very very delayed!

Snoopy! Hi yes def the thread for you, some very knowledgable ladies here and always good for support and options/answers/ comparatives!

I saw dr shehata for the very first time on 29/10/14 was the best move forward for me for answers an a treatment plan!

I wish you well on your journey with him I think you will get some good answers for sure as he seems I me like he doesn't just 'give up' on us!

How is everyone today?

We have had some disgusting weather today I have to say winter has most definitely hit here! X

freelancegirl · 02/12/2014 20:33

Glad to be of service! I have always tried to keep my TSH levels under 2 but as the years have gone by my thyroid must have gradually got worse as ive gone from needing an initial 50mcg thyroxine to now on 150. When I had my first two pregnancies I imagine my thyroid was out of kilter - the first being what might have kicked the thyroid problem off and the second I was probably under active without knowing it.

My third pregnancy was a horrible shock of a miscarriage at 12 weeks ( although had been a mmc at 8 weeks unbeknownst to myself) and at this point my thyroid was controlled. Fourth pregnancy was a blighted ovum (now on treatment with Mr S for hnk -thyroid controlled), fifth pregnancy was by DS - on all treatment, sixth saw a heartbeat at 7 weeks but it was gone by 8 weeks - turned out to be chromosomal and the only one I've managed to get tested, seventh pregnancy will hopefully be my second child in a few weeks time. All 5 most recent ones my thyroid has been well controlled and I have always found it ridiculously easy to get pregnant apart from this pregnancy now which took 4/5 months although I realise that's not so long.

There's no reason why your GP wouldn't test you for thyroid antibodies - ask for a full thyroid function test and spell it out to them - but I used to read horror stories about labs refusing to do these even when asked!

But yes mr Shehata is a miracle worker and understands thyroid issues fully. He will more than likely test your nk cells levels too. It might be a bit early on the day, as it were, to react after one miscarriage but if you can get the cash together and have such a strong family history of autoimmune conditions it could save you a lot of time and physical/mental challenges.

Mr S has always suggested waiting two cycles after a miscarriage. Not necessarily about dating but about making sure your body is ready. He is also likely to want you to be on pregnancy vitamins plus omega 3, extra vitamin d and low dose aspirin so it might be worth you starting these now. I also took selenium as that's something that can affect thyroid function and pregnancy and although it wasn't on his usual protocol he said go ahead.

Tryingno1 · 02/12/2014 20:40

Snoopy-good luck with him. And I hope ur next preg is succesful like ur mums :).

Girls I have a question/wondering u you have asked mr s...NK cells are also known to stop people getting preg/cause for failed ivf...are they a diff sub type (they all have diff markers) to the ones he tests for? Is NK cells stoping us getting preg something i should be worried about too?

dildoos · 02/12/2014 21:13

Nk cells can stop you getting pregnant yes Sad
They vary in level inter uterine and in bloods.
Some people have normal levels of nk cells (me) but they are aggressive and fight things off (babies) so can get pregnant but then can't get past a certain few weeks due to the attack!
Does this help? We were advised against Ivf as he said this alone would not work xxx

Tryingno1 · 02/12/2014 21:18

I see-is that what mr s said? I know free had sky high levels but always got preg v quickly...so maybe panic over nothing?
Like you dildoos, my nk cells are not high just active....but I also read levels can be lower if taken after ur
Period?!
Free ur an nk cell Expert- do u know anything that can be done naturally to bring them
Down? Or anyone else?

dildoos · 02/12/2014 21:26

Yes NK cells can vary through out your cycle in how many I believe but the aggression I thought stayed the same and this was why for the pred? Arrrrggggghhhh so confusing! Xx