TTC or pregnancy on prednisolone or similar part 12

[teamdozie]

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Just to add to the MTHFR debate, I'm homozygous (C677T) and am on l-methylfolate rather than folic acid as those of us who are homozygous cannot metabolize folic acid well at all. I understand I should be on l-methylfolate for life, not just for pregnancies, although of course it's more important (and I take a higher dose) when TTC.

Hiya - yeah i am MTHFR and hetero 677t and its definitely 5mg of folic. I basically asked for it from Louise at Shehata's clinic. Reason being because I feel that the gene does effect me, although I understand that it doesn't impact a lot of people who have it (i.e.: I have terrible migraine with aura in pregnancy and obviously have previous miscarriages). I am wondering when to stop taking it though....

Hi Matts welcome to the thread. I have requested prescriptions to be sent in the post regularly via Louise which has never been an issue. They have even faxed them directly to my pharmacy when I had an urgent request.

Wouldn't worry too much about the hydroxy check - just query at your next appointment. I have been on it since Oct 2013 and by chance had the retinal scan at my last optician's appointment. Will be following this up though with Mr S when I see him next week. Better to be safe than sorry.

Hi mattsmama, please don't worry about the hydroxy, it's usually very well tolerated. I'd just ask Louise or Cheryl for a prescription renewal; I'm sure they'll sort it out for you. Best of luck with ttc this cycle.

Sorry, just refreshed and saw all the above posts on folic acid - thanks Tum, Charlie, Ari. Charlie, yes, Mr S also seemed to think that the heterozygous form wasn't an issue; apparently this mutation is present in about 40% of the Caucasian population. Tum that's really interesting. I also get hormonal headaches (just before AF and usually in early pregnancy) but not migraines, and never an aura.

village When I was seeing him Mr S didn't think much of the homozygous form either, and certainly didn't have anything to say on the l-methylfolate discussion - he just said high-dose folic acid is the answer. Which it definitely isn't for the homozygous folk!

Just wanted to pop in and say so sorry to hear your news Charlie. No words, it's just rubbish and unfair.

I am mthfr homozygous like Ari and take 5mg of folic acid - although maybe that isn't doing anything at all! Bit worried about all this hydroxy monitoring Dr S now seems to be doing. When I took it for about a year I just had a liver function test after a few months. I wonder what has made them change their tune?

belly I hope I haven't caused unnecessary worry by mentioning this monitoring. It's been presented as a totally routine thing which they're introducing because hydroxy is still a fairly new treatment.

Ari have I got this right? If one is MTHFR heterozygous (as I am, for c677T) then extra folate in the form of high-dose folic acid would be ok to take, but anyone who is homozygous would need to take it in methylfolate form (because the homozygous folk absorb folic acid less well) - is that the gist? Is there any reason why the heterozygous folk shouldn't take methylfolate too instead of folic acid, since that's the biologically more available form?

That's absolutely the gist village - those with the heterozygous form have one working copy of the gene and so can metabolise folic acid much better than those with the homozygous form (but not as well as those with two working copies, obviously). Absolutely there is benefit for those who are heterozygous taking methylfolate, because it's already in the form your body needs. It can only help - but of course many may not want to do this because l-methylfolate is more expensive than folic acid and it isn't prescribed here, where folic acid is.

My silly iPad keeps insisting 'folic' should be 'frolic'. It's having a laugh, ain't nothing frolicsome about any of this!! :)

Thanks ladies - I feel a bit more reassured. However Mr S is adamant I have to see him before issuing another prescription. Cheryl rang me back today after sending an email. I am thinking along the same lines as belly though - why have they started doing much more thorough testing/checks and he definitely won't send a prescription without reviewing me, even when I explained I would more than likely run out before I could get down to see him. Ah we'll - Ill have to see what happens - prob get pregnant this month and run out of the bloody things and then I'll be in a panic!

Matts that is annoying they can't just give you a prescription that will last until they next see you. I suppose they have their procedures they have to follow maybe for their insurers or something?

I had another scan. I was expecting it to confirm blighted ovum but there was a little fetus measuring 6 weeks 3 days with a strong heartbeat... but I know when I ovulated - I felt it really strongly and got really strong OPK the day before - and I am 7 weeks 5 days today. And also we only DTD 4 days before the day I felt ovulation and not done it since so I really can't be that behind. Dr says it could go either way at this stage. Ummed and ahhed about the intralipids due on Sat . Not sure what to do. I'm not on pred and the last intralipids I did was 4 weeks ago. Do I do them anyway or wait another week and see what happens?

I had another HCG and will get the result this afternoon 2 days ago it was 12000.

Aarrrgh I had forgotten all this limbo worrying!!

Charlie that is brilliant news!! Keeping everything crossed for you!! Don't give up just yet! I would have the intralipids anyway! Give this little one as good a chance as you can!
Nothing is exact in the baby making business! You may have DD but it may have just floated around for a while!! A heartbeat is such a positive sign!

I saw Dr S yesterday and left dealing extremely uneasy! Not sure why as everything looked good! He was cross that the hospital measured me 5 days ahead! But I said to DH they used a proper machine not his silly little computer!!

I asked him if I needed any tests done as I've been in hydroxy for a while and he said yes full blood count etc etc but nothing else!!

He was happy with my progress! Baby was in an extremely strange position arching it's back! It's amazing how things like that can worry you!

Waves to everyone!

Xxx

charlie glad to see your baby lives to fight another day that's such good news.

team good news about the scan, do you feel uneasy because of the position the baby was in or mr s attitude?

Charlie what great news to start the day with. If it was me I would definitely have the intralipids and give your bean the best chance possible. The body is a weird and wonderful thing and who knows what's going on in there, but something is obviously and the intralipids may help it continue.
Limbo is a terrible place for out mental health - or lack of. There is a mantra that many on here repeat which is "today I am pregnant". Just take it one day at a time as otherwise you'll be on a knife edge ALL the time.

Team glad the scan went well. Mr S's computer cracks me up it's so tiny. With all the money we all pay him you'd think he'd invest in something a little more professional .

Regarding your unease, I suspect it is a natural thing after all the mcs and stress of ttc and then worry of another mc, it must be strange to see that all is OK and to have gotten over the first hurdle of the 1st trimester. I'd like to say sit back and relax but I know from my own experiences, that isn't possible so as I said to Charlie above, "today you are pregnant" and take it one day at a time xx

Tum I think it's a mixture! As much as Dr S said he was happy he said we aren't out of the woods just yet! He was also shocked that I was measured 5 days ahead on my 12 week scan! So he measured me bang in my dates! But when I looked at the screen his little curser wasn't on the babys rump! Which annoyed me! I feel like he thinks the NHS are idiots! That he don't know what they are doing!

Regarding the baby's position that worried me! But I know it was just moving around! I've just never seen one in that position before!

Luna I absolutely agree! They have a proper machine in one of the other rooms! It's crazy!
Regarding my unease! I agree it's a combo of everything I think. Plus DH is away till Sunday! So I have no one to calm me down!

The proper machine belongs to New Life - separate company to Mr S's who pays to have an office at NL. Probably why he has a portable scanner.

team. it's really annoying when they don't seem to be doing the measurements really carefully. I always feel like saying ' can you do that measurement 3 or 4 times'! I know you can't be that accurate with them but still when you yourself can see they are not measuring to the right point, it's not right. Anyway, you did see that so you can legitimately add on a few extra days for sure!

I doubt you have anything to be worried about the position of the baby - they are little wrigglers when they get to that stage. Why did Dr S say you are not out of the woods yet? Sounds like he was having a moody day?

charlie glad to hear things are looking more positive. Fingers crossed they keep going that way. If you are due intralipids I'd have them, give it your best shot then you are not left with any 'what if?'s

team I've never seen Dr S but I do get the impression his bedside manner is a bit lacking. I can't understand why he would get huffy about measurements differing by a few days. Getting through first trimester is massive. Obviously none of us are out of the woods until baby is 21 and off our hands here safely, but it is all going in the right direction for you this time. Stay positive. Today you are not only pregnant but in 2nd trimester!

Luna I didn't even know that! I thought New Life was his business!! Well you learn something new every day!

Charlie possibly cause of my late loss 2 years ago! But still! I can't put my finger on what it is that is making me uneasy! But I must admit you girls have lamed me down!

It's so great to talk to someone who understands!!

Xx

It's interesting how it works with docs surgeries when it's private. Here, (middle East) the docs themselves only make about 30-50% of the consultation fee and the rest goes to the clinic owner. They can however make huge amounts on referrals as they have deals with the people they refer to. I have heard that some docs will demand( from the doc they refer to) 20 - 40% of the consultation fee! This is not in the UK, so not sure if it quite works the same there, but I would never blindly go to doc referred to me by another doc until I'd done my own research!

Team - don;t we all feel uneasy during pregnancy once we've had losses? Especially until you get past your own personal 'milestone' where you lost one previously. I'm not sure this uneasiness will ever go? I look with admiration (and a bit of envy) at friends who calmly sail through their pregnancies with no worries, completely blind to what could go wrong.

Ok i just got my HCG and went from 12,100 to 12,400 in almost 2 days. I'm now thinking probably not worth doing the intralipids? Any thoughts?

Ari as you say, nothing frolicsome about any of this ttc and pregnancy lark! Well, maybe DTD is occasionally frolicsome

matts sorry to hear you couldn't get that prescription; any chance you can squeeze in a clinic visit before you run out?

Luna the eye test today was fascinating; I don't think anyone has ever examined any part of me so carefully before! Lights and discs and flashing points and lenses and whatnot, and of course the retinal scan. All was fine and it turns out, much to my disappointment, that I STILL don't need glasses! I've always wanted those little bifocals

team, don't stress about Mr S's reaction, just hold on to the facts: you're in the second trimester, you're measuring at least bang on for dates if not slightly bigger, baby is active (they do the twist in there, don't worry about an arched back; he or she is probably doing much more extreme things you haven't even seen!), heartbeat strong, all looking as it should! At this stage, things couldn't be any better. That's a pretty good position to be in.

Charlie did they give you an opinion on what your HCG count might mean? I'd probably still do the intralipids.

Charlie hcg levels after heartbeat are meaningless! please visit misdiagnosedmiscarriage.com website and see for tourself. please do not give up on that little heartbeat without giving it the best possible chance, all the best!

Charlie - sorry to hear the stress you are going through at the moment. It is hard to know which way it will go. I don't know if it will help or not, but I had a pregnancy that at 7w3d, was told that I had only a sac measuring less than 5 weeks, no fetal pole or anything. When I knew I ovulated early this was not good. However 2 weeks later was measuring correct for dates, by the 12 week scan was measuring correct for my ovulation calculation ahead of dates. The pregnancy produced my dd who is now 9 years old. The mis-measurements were due to a retroverted uterus, and yes it can change from antroverted to retroverted following a pregnancy. Having said that I have had 13 first trimester miscarriages now, and many measured behind for dates. As for hcg, it is a low increase, but it is an increase.

Personally, while the pregnancy is continuing to progress (however infuriatingly difficult it is to do) then I would continue to do whatever I would do with a pregnancy, that I would assume to progress (for me the advice differed from different docs). But that is just my opinion, and in my experience I have "known" when the pregnancy is failing and sometimes I think that accepting it and letting your body do what it is going to is easier to do. You can only do whatever you feel is right for you.

Regarding if this pregnancy is going to miscarry, then it will not happen until the hcg starts to fall. The loss itself is unpredictable it could start fairly quickly after the hcg starts to fall, or it might wait til the levels are nearer to zero, or might continue for a while as a missed miscarriage, it is not possible to predict. Again sorry you are going through this stress right now, I truly hope you have a little miracle like my daughter.

I thought new life was his too :/ sorry about his attitude :(
Good news team I remember in may I had nhs scan on the Thur saw heartbeat then saw mr s sat who couldn't find even a sack so was left all bank hol wondering what had happened to it, went back to hosp tue and their it was allbeit a mc but it was awful :(
Charlie id have the intralipids if I were you, luckily I've found a nurse to administer mine as didn't fancy paying £270 a month and I'm not near ins.
As for me af is a day late, I tested tue bfn just putting it down to being on cyclogest after ovul x