Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Hi guys, just catching up with some of the messages.
Snoopy I hope you find a way to keep positive, not sure what your status is at the moment but fingers crossed is all good news! :-)
I am on second month ttc, hoping for a positive, just got another two days of preds and then not sure.. I guess have to wait a few days before taking a pregnancy test.. ? I am so nervous and really impatiant, not good really but is hard not to think about something you want so much. Scare to hell of having another miscarriage also. I have a question for any ladies here actually, I am on the complex natural killer programme and everything seems to be going well however looking back at my test results one of them came back saying that I was Homozygous MTHFR, from what I understood MTHFR is a common genetic variant that causes key enzyme in the body to function at a lower than normal rate, in many cases this can cause miscarriages. So the Dr provided me with extra folic acid supplements not the usual that pregnant women should be taking. However I was reading about it and most of websites said that I should avoid taking folic acid.. I am so confused and worried, has anyone got or know someone who has the same issue?
The thing is I have been taking the extra folic acid for two months now as the doctor said but why everythin online says I should avoid it.. unless I am not reading things properly or I have some other particular kind of genetic mutation...

BIG CONGRATULATIONS SNOOPY!!! Such great news :-) It's starting to feel more real now I bet!!

Mochita- sorry you've found yourself in this situation. I'm afraid I'm not familiar with what you're asking about... I took folate on my own which is supposed to be a form of folic acid which is easier to absorb. I was also positive for some sort of MTHFR thing in my blood work (don't remember which) but at the time I looked it up it seemed like it was very common.

That's amazing new snoopy! Congratulations!! Knew we'd have good news from you today!

Can I ask - did you have a stash of pred at home ready just in case or did you phone the clinic straight away??

Mochita - from what I've heard, I think the super folic acid stuff is commonly prescribed for MTHFR, didn't need it myself but I'd go with what ever DrS says, he's the best in the business. If you're worried give the clinic a call

mochita was it dr s that prescribed the extra folic acid? I'm only heterozygous for MTHFR so My understanding is I only have one offending gene instead of two? I've been taking metafolin instead of folic acid just in case. Metafolin is the version of folic acid you don't have to convert so it's bioavailable. I take solgar brand which is widely available if you're worried? Fingers crossed for testing day

seeking I had half a blister pack left and my mum always has pred lying around for her arthritis which she's always been generous with if I'm running out

Yes Snoopy.. Dr S prescribed the extra folic acid. And yes I have two copies instead of one but I have to be honest I am now unsure if this should make a difference to you for instance hence he has given that extra folic. Did he prescribe the folate sup you are taking ?
Btw, great news about you! Keep positive, can imagine is hard not to worry or expect the worst I am the same :-) positive vibes all the way from me to you

Ah right. My understanding is that Dr S doesn't believe that only one copy of the gene will make any difference, I take the metafolin because of my own research and I figure I might as well cover all my bases but I only take the 'normal' dose. If Dr S prescribed it I would trust him.
Thank you. It was definitely very unexpected good news. I want to try and 'enjoy' this as much as it's possible to when you're as anxious as we are because, if successful, we would be done and this could be my last pregnancy.

Thanks snoopy, yes it gives me comfort to hear from all of you, I have to see Dr S in two weeks I guess either to tell him I am pregnant or not either way I need to get more presds tablets etc hopefully it will happen for me too, I have hope and faith but just too impatient!!

I also am heterozygous MTHFR and following my own research I don't take any folic acid. I was also prescribed high dose folic acid but decided to take a pre natal with folate. I also take the liquid form of folate to Get a Higher dose. My vitamin is Thorne basic nutrients and the liquid is biocare methylfolate. I do believe that most doctors don't fully understand this condition so give extra folic acid but we can't break it down. Much worse for homozygous. I was also told it can increase blood clotting but also your ability to absorb progesterone so injections work better than suppositories. Not sure how true that is as didn't find anything from my research. Not sure you are doing IVF though so perhaps less relevant.

Thank you for sharing tiredhs. I have emailed the clinic for a clarification and confirmation that my prescriptions is correct. I was looking at my result test and what it says is to prescribe extra folate supplements, hence the doctor prescribe folic acid but this isn't the same right ? Hence every where I read says stop folic acid but take other folate.. I will wait for a reply, hopefully it will clarify, I don't want to question dr S advise or interpretation of the results of my test but this is so important for me, not just we are paying a lot for treatment but is my body and my hopeful future pregnancy right..

No you need methylfolate as this is the natural form. Folic acid has to be broken down to create folate and this is the problem as you can't do that when you have this mutation. I think for heterozygous you do it 30% less well and for homozygous it can be up to 70% less. As I said most fertility doctors aren't that clued up on this mutation. I would suggest you are folate and ask what dose you should take. Ultimately by taking folate you are taking the actual form that your body needs so it is no difference for the doctors. I told my doctor I wouldn't take the high dose folic acid and he was ok about it just told me to take the multi vits and the liquid form.

Waving huge sparkly pom poms for snoopy! Fantastic news!

Thanks yomping, how are you feeling?

Bloody enormous. Nothing fits. Baby kicking away makes up for it though!

Hi all,

I've read through the entire thread and you are all an inspiration! Congratulations Snoopy! Honestly, reading through everyone's stories has been both harrowing and heart warming. But ultimately, it's amazing to know there are others out there going through the same as me and with a lot more intelligence about it all than me!

Which leads me to my question... I've lurked for a bit as I'm under the care of Mr S and at the start of my journey. I've had 8 early miscarriages and only now do I have a few answers as to why they might have happened. I have ultra high TNF alpha levels and I've had two injections of Humira at the beginning of December, dropped all gluten from my diet (and caffeine - Christmas was a barrel of laughs ) and I find out the results on Thursday. Thursday is also when Mr S tells me what my plan of action is (prob Letrozole then intralipids if successful), once my levels have dropped (he has warned me I will probably need another 2 shots of Humira as my levels were quite high).

My question is; I'm on cd25 today of a 32 day cycle and I've had brown spotting throughout the day. I'm considering using some progesterone pesseries I have left over from a previous consultant (Mr Kelada) just in case it was an implantation bleed. Never had one before and certainly don't feel pregnant! But...you know...anxiety/hope/Sod's law means I can't ignore that it might be a Christmas miracle!

Although I don't want to take the progesterone and cause false pregnancy symptoms/prolong my cycle.

If anyone has any help I'd be most grateful.

Sorry for just barging in, hope you don't mind

Aw yomping so glad to hear your little one is doing well and kicking away, so reassuring!

Hi belkinsboo! Welcome to the thread, so sorry to hear you've been through such heartache to get here. All my fingers are crossed that you've finally found the answer.

I personally haven't taken humira or letrozole but I admire your determination, especially over Christmas! I know some doctors do prescribe cyclogest from ovulation so I can't see that it would do any harm apart from maybe delaying a period for a couple of days if you aren't pregnant? Sorry, don't think that helps much

Hi guys I have a silly question.. would you considered the attached as positive? I took this test 4 days ago, my period was due yesterday and of course it hasn't come but when I took the test I threw it out because I saw only one line.. today I was emptying my bathroom bin and not sure how but the stick was on view and showing what it seems a big positive :-) I am shocked .. happily though and as I don't have a spare test until later this evening ( the snow prevents me from driving to shop) i wanted to know what you think. I run out of preds too.. haven't called dr S yet not sure if I should wait until I do another test just afraid cause the Instrutions said to continue on preds should I get a positive test.. I guess I should start with the pessaries as well.. omg I don't want to get to excited but can't help thinking that I definitely am pregnant!! Scary too after my two losses :-(

Hey everyone.. I hope someone sees this and can let me know where you are now.. Struggling to find you!

Ok ignore last post.. Suddenly it went from May last yet to today.. I will read and catch up and then update you on me later.. Happy Friday in the meantime X

Ps Mochita.. Looks positive to me.. Strength of lines don't matter .. Congrats but I know, take each day as it comes x

Mochita hi, I have just dipped in and read your updates. The test looks positive to me. :-)

In terms of MTHFR I consider myself to be quite across this mutation gene, and in my opinion you should be on the NATURAL folic acid called methylfolate AND you MAY want to investigate taking clexane as a precaution. Just a prophylactic dose. The reason is MTHFR can cause higher levels of homocysteine which in turn can sometimes make blood thicker. You say you have two copies of this mutation gene (homozygous which means that both your parents have a copy and obviously have passed it to you, hetero would mean just one parent is a carrier). The clexane will help to prevent any blood clots but given the dose (40mg) will not make your boood overly thin. Obviously this is just my two cents based on personal research. Xx

Sorry I should add I mean to take the clexane during pregnancy. Obviously the methylfolate should be taken anyway x X good luck with it all. Xx

Thank you guys, will do another once I get hold of one just to make sure. Tumtimes1 thanks you know I contacted Dr S and although I am going to see him again next week he said that I should just follow his advise because he has tried this many times .. I am still a bit sceptical because what you said and what I have read researching the web makes more sense but he is my doctor and I am unsure now on what to do.. I will obviously speak to him and explain what I have found out but as I am not expert it's hard to decide who to follow.. at the moment I am still taking the folic acid as he said plus aspirins but scare of something going wrong due to this. Are you also his patient ?

Yah have to do another test cause apparently you should not look at results after hours, can't remember how long I waited the first time but it wasnt that long and put it in the bin. Anyway, I guess I will find out tomorrow

Oh mochita I have my fingers crossed for you, really hope it's good news when you get the test! With regards to the folic acid, if you take a high dose of methyfolate technically you're not going against his advice.

Hi rosa! We're all here! Hope you're all well

I know it's a tough one. I WAS a patient for Mr S and when my result came back as hetero he explained that it was extremely common. (I.e. One copy) and wouldn't prescribe anything. I then begged Louise for some high dose folic acid.

After later researching this I realised I needed the natural folate so went on that. I also then moved to an NHS doctor who was happy to follow mr shehatas steroid protocol but also added the clexane owing to the MTHFR issue.

With your situation (i.e. Two copies) not being as common as hetero, I think it's worth seeing what mr s says about that? research protocol would suggest natural folate (methyfolate) and a possibility of raised homysystiene levels which some experts attribute as an inherited thrombolia. Ie SOME docs attribute miscarriage with raised homyststiene levels and others don't. I guess my question to mr shehata would be would it hurt for you to consider a blood thinner in addition to aspirin. Or is this not needed. Ultimately he is an expert in his field but as his patient and for your peace of mind, worth an ask I reck.

Here is an article which looks at both sides. www.verywell.com/mthfr-and-recurrent-miscarriages-whats-the-story-2371789

My thoughts on the matter are as follows:
I had had three miscarriages in a row
My NKC were borderline so I still went on 25mg of pred as it couldn't hurt, so in my opinion I also felt the clexane wouldn't hurt either and ended up taking it for the whole of my subsequent two successful pregnancies.

Worth an ask - don't want to confuse matters but I still think it's an idea finding out his thoughts. Best of luck x