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 @Jenbot78
I gather Mr S sees people from all over, including other countries but you have to be prepared travel fairly frequently if you get your BFP.
The initial tests have cost a couple of thousand. The medication isn’t v expensive but follow up consultations and scans are (again with BFP). Can give more detail if needed.

Depending on your results a typical programme is taking 25mg pred daily from ovulation for 10 days only, each cycle. BFN = stop taking it. BFP = continue.

However, if you have already been on pred, do you think you really need to see Mr S? I guess it depends what type of tests you have had already.

@jenbot78
The initial consultation is about £300 and before you go you have to complete quite a lengthy questionnaire with your history. When he reviews this, he suggests what he could do, what tests he’s advise etc...
perhaps it’s worth having this consultation and making a decision from there?

Hi! Is it OK if I join this thread please? Been to see Mr S and now have my treatment plan. Will start when I hit ovukation this month. If I ovulate - had a mmc at 10 weeks about 2.5 months ago and was still getting positive preg tests until recently - so not sure whether I am now back to normal or not. Would be nice to know some others are also going through this.

@jenbot - it's £325 for the initial consultation and you can end up spending £3k on blood tests.

@DaniMERL is it not sufficient to have the NHS do the scans? Are you under the NHS for rm? Why do you have to see Mr S for scans also? Does he make changes to the meds or anything? Trying to figure out if I can cut costs if I get a BFP at any point...

@taxgirl1 I’m a private patient so not sure about nhs with mr S but my understanding is that he is v strict on the All or nothing rule - there’s no opting in and out of stuff. I guess you can always self-discharge if you get BFP but generally he only discharges at about 16wks and so you’d need to know what meds you need. He wouldn’t supply this and the check ups without also doing scans.
I’ve never got this far - just know from all the research I’ve done. I think I have another BFN again this month. Onto cycle 5 and getting disheartened...

Hi @DaniMERL don't get disheartened. It can take a while to fall. It's so tough though. It's such a roller coaster of a journey. It is so wearing emotionally. Stay strong. I find the BFNs the worst part of the month. Stay positive. I'm sure it will happen for you. Do you have any children already? Thanks for the info btw. I thought you might say that. I'm still a little sceptical abiut Mr S and this treatment plan. It feels a little like exploitation!

hello everyone, is it ok if I join in too?

A bit about me
Age 36
2 x MC (1st one 6 weeks, last one was missed, D&C opted)
Dr S diagnosed - borderline hypothyrodism, High NK cells, Very High NK cell activity, High TSH (4.88), AMH 3.2 ( :( ) and MTHFR mutation heterozygous (aka the common one that 50% of population have).

Treatment plan is Levothyroxine for 5 weeks and then retest, Pred, Interlipids, Cycolgest, Omeprazole, Fragmin from BFP and all the usual prenatals and vits he prescribes.

Since seeing Dr 2 three weeks ago I have been anxiously trying to read up as much as possible on the treatment plan and have been swaying back and forth with decision making. Reading these Pred threads have been a huge comfort to see so many positive stories. My main concerns really have been around the long term effects of being on the Pred and whether it is linked to causing any illnesses later down the line (osteoporisis, cancer), not sure whether anyone else had similar train of thoughts or fears when diagnosed or whether I am just being neurotic!? Am a bit of a naturopath at heart and just trying to take a measured approach whilst I have the time to read up on things. I guess in a space where so much is out of control it makes me feel like I have some control over something! Would obviously love a BFP to stick hence seeking Dr S in the first place but its a bit of a scary place when you start reading about the side effects etc

I have been told not to ttc until have had the TSH retested in early Dec.

Would love to be part of this wonderful group which I have been silently stalking these past few weeks and hope to be of resource and support to this super forum of strong women :)

@taxgirl1
I know, I am sure it will happen. Just hate being in the hands of nature again.
Yes we have a 5 yr old daughter, conceived with no issues and straightforward pregnancy. Not v straight forward labour. All losses have happened since.

I know what you mean about the plan. Feel like our desperation is being taken advantage of. But for now I have decided to place my faith in it and am encouraged by the people I have spoken to who have success.
(@zarala how is it going?)

Welcome @sunshineblonde1

I choose not to worry about the effects but I know how you feel. I hate getting the BFN each month and knowing I’ve put all this stuff in my body for no reason. Keep us posted with your progress

@DaniMERL thank you for the welcome. Sending you lots of positive vibes and renewed strength for a BFP soon hun. Please don't give up. I know its easier said then done as this is huge mental and physcial challenge but from all the ladies who have been following Dr S's treatment plan it seems to be worth sticking to the faith. There's always Superovulation. I think Dr S mentioned he wants to put me on that if I don't conceive in 2 cycles because of my fairly low AMH. I have 3.2 and am 36 (37 next month) and he said very bluntly I have the reserves of a 40 yo!

@sunshineblonde1
Thanks! He has said the same to us but when we went back after 2 cycles he seemed more relaxed and said try for 6. I think we will definitely go for the SuperO after 6. Out of interest, what was your AMH? Mine is apparently on the ‘low side”. I am 38 in March.

@sunshineblonde1
Oh sorry - you said the AMH above.
I think mine is 9.something.

Your AMH doesnt sound that low to me :) I am just hanging about waiting for my follow up appointment on Dec 13th as he wanted to bring my TSH further down into the normal range before we start TTC again. Fingers crossed we both have our sticky BFP very soon :)

So I've just started to take the pred and use the progesterone pessaries. Feel a little nervous about it - but am doing it anyway. Did you experience any side effects. My boobs feel big - is this a side effect of the progesterone? @DaniMERL have you experienced any side effects from any of the drugs at all? I'm 43 and don't know what my AMH is. Not sure I really want to know. @sunshineblonde1 Mr S is very blunt isn't he. He told me that the fact that I'd had 4 mcs in a year was fantastic - I don't think he meant it quite how it sounded but anyway... Fingers crossed we all get bfps soon

@Taxgirl1 Dr S has such a wonderful way with words doesn't he lol! To be honest when I had questions he was dismissive. A shame as his consultations aren't cheap. But I guess we just have to have faith in it. The success rates speak for themselves. Just wish he was more reassuring about the treatment.

Best of luck on the pred. Very interested to hear about your experience so do keep us posted. I should be joining you on the protocol after my follow up with him in Dec.

AMH is an indicator of your egg reserves. It stands for Anti-Mullerian Hormone. We are all born with a certain number of eggs, apparently my reserves are less than the average person for my age. It just means he will want to speed the process of conception up, so will likely offer me the Super O treatment sooner.

Sending lots of positive vibes for your Pred experience and BFP :)

@sunshineblonde1
@taxgirl1

No severe side effects tbh, which is good.
Mr S and my husband had a little joke at my expense regarding my apparent increased mood swings, which didn’t go down well. I have the hunger and have put a little weight on but have not been v careful with my food so that’s not surprising. I have slight heart palpitations too.

I put off having the AMH test for a long time as I didn’t see how a low score was going to help my mental wellbeing. I think it really is to be taken with a pinch of salt as you hear so many stories of people with low scores conceiving with no problem and visa versa. Plus people having the test multiple times and getting really varying scores each time.
We are reaching the fertile period of cycle 5 now so let’s see what happens this month. Trying to relax a bit but that 2 week wait just gets worse each time.

@DaniMERL
@Taxgirl1

That's reassuring to hear. I am presuming the Pred effects go into full swing once there is a BFP and we have the 12 week long stint on it. Keep me posted on your journey's. I am eager to get cracking now but cannot do anything until I have seen Dr S for my thyroid re-test in Dec.

Out of interest do either of you have accupuncture? I am thinking to try it and also I read eating more of a plant based diet can help with the side effects of the Pred too. I've been doing some holistic exercise classes too to keep my mind positive and balanced.

Re: AMH yes I agree, Dr S didnt seem too fussed by it, just said it's good to keep in the back of the mind and not to waste time in ttc etc.

@DaniMERL good luck for this cycle, everything crossed for you and sending lots of relaxing and positive vibes!!!

@sunshineblonde1
Yes I do acupuncture and have for a long time, with lots of breaks in between. I initially started for chronic fatigue before having my daughter and continued through pregnancy for good labour and induction. Admittedly I was 11 days overdue and the labour was a bit of a disaster but I still like the holistic approach of acupuncture.

I returned about a year ago, which saw me through the latest miscarriage. We focussed on improving the cycle and general clean eating, rest, less stress etc. She prescribes lots of vitamins too. I had another break after a loss in June and am back there again now, mainly because I was suffering with stress and anxiety again.
I don’t have a “success story” with acupuncture but I still am convinced it does some good. It’s almost a bit of a general therapy session for me. She is the only person who seems to really get it and let’s me have a good cry!

Yes I believe the side effects get worse when you are on the steroids for a longer period of time. I guess it can be tolerated a little more when there’s a clear good reason for taking it. At the moment it is frustrating to get to the end of each cycle and find I’ve been taking it for no good reason.

@sunshineblonde1 yes I have started acupuncture - I really enjoy it. If nothing else it's nice to have a little time to myself and to relax. Ideally I could do a little more to keep myself a little more balanced generally. Life is so busy. Sure it would do me good to slow down a little.

So I took the pred and progesterone this month but my instincts were telling me that my period was coming even before I started to pop the pills... I've had two bleeds since my mc - I know my hcg levels were still raised after the first bleed because I had bloods taken and it looks as though the last bleed wasn't a period either (even though it came after 28 days). Think this has to be my period now - I think it's been trying to make its appearance for the last few days but the progesterone has kept it at bay. Do you think this will affect ovulation etc this month. Like you ladies I hate the feeling of being so out of control with what my body is doing and I have hated taking the steroids. Don't like pumping my body with stuff especially when I don't know when and if I ovulated. It all seems so forced. With every month that passes I become increasingly inclined to give up on trying... So @DaniMERL I know how you feel. This is only my first month of trying the pred (and it was not the time to try clearly because I jumped the gun) but after a year of trying (and I know it's not that long) and 4 mcs I'm tired of feeling as though life is on hold..,

Ps sorry for sounding so flat. I guess it's hormones. When I first started taking the pred I was wired and couldn't sleep and happy as Larry - now I feel as though I've come crashing down 😢

@Taxgirl1
@DaniMERL

Oh I totally understand how you feel in terms of life being put on hold.I just feel like a whole year has gone by with no baby to show for it, just loss. Eck! All the while, seemingly everyone else around me seems to make getting pregnant and holding the pregnancy look so easy. I am also feeling impatient and hate the fact that I have to take these Meds for even a chance of holding a baby but I keep telling myself that hopefully Dr S's protocol will improve and speed up the chances of success, so it will be worth it in the long run. I do kind of think that If I stuck to the natural route of conceiving eventually one would stick but how many miscarriages that would take I don't know!!! So for now, I will try Dr S's route and see what happens. We have to have faith don't we?
My approach is to be kind to myself and body in the mean time and indulging in the holistic side. My friends with children all yearn to have the 'me' time that I can afford, and yet I yearn for what they have lol! We always want what we don't have!

I am definitely going to try accupuncture then. People I know who have been ttc and failing for all variety of reasons seems to be doing it. Like you said, if anything it is good for the mind and soul and makes us feel that at least we are doing something good for ourselves. The power of a positive mind is hugely important in this process. I am so glad there is this thread for support too as I don't know who else I could moan too once I start taking the Pred lol! No one else would understand!

@Taxgirl1 oh bless you, do not apologise. From what i have read on these threads, the highs and lows are a common side effect of the Pred especially the slump!

Are you tracking with OPK's? I need to get some OPK test sticks for my next cycle when I am due to start taking the Pred. A side effect of the Pred is that it can muck up cycles and ovulation so it is definitely important to track. @DaniMERL did you find the Pred mucked up your cycle?

Hey @DaniMERL !
I've been off mn for a while and haven't had a chance to check in
I'm super happy to report I am 19 weeks tomorrow and have my 20week scan next week
All is going well except I still have quite bad acne which started on the pred (first time experiencing acne in my life!) and I am really quite fat! I have never been this wobbly ! Dr s said it's from pred but I never even really ate more than usual...but oh well this will all be worth it if this baby comes home in my arms healthy and normal 🙏🏽🙏🏽🙏🏽

@Sunshineblonde1 hey! Yes I had the exact same worries as you- but I just decided to put my faith in dr s and give it a shot, I am def a herbal remedy / naturopath kinda girl and hate drugs of all sorts- so taking all this medication was quite a big decision for me. However i decided it was worth the risk because actually we don't stay on the drugs that long! I was totally weaned off the pred before I was 14 weeks and really compared to people who use this long term I feel our risks are lowered....

With regards to other side effects of the pred I don't think I had any mood swings but I found if I had a cup of coffee in morning I would get the worst anxiety! I think pared with the anxiety of being pregnant and everything it was too much- i just totally cut out the caffeine

But yeah just lots of acne which spread to my chest (gross!- happy to say that's gone now) but it's still on my face and neck- dr s says it gets worse before gets better
And flabbiness which my husband doesn't mind but I've always been into my fitness and looks so it's quite annoying!

Anyway these are petty things to complain about
I just wanted to check in and see how everyone doing and to wish you luck! It will happen and hopefully 🙏🏽🙏🏽🙏🏽 we will all be another of dr s's success stories!

@taxgirl1 don't apologise! We have been / are currently there, right with you.

@Sunshineblonde1 actually my cycles have been pretty clockwork in length and ovulation date, which has been a pleasant surprise. In fact, sometimes, I wonder if the drugs are doing anything at all (or if I'm on some dummy placebo ones) as I don't really feel much. Shouldn't complain!

And the theory about eventually having success naturally could be true and it's what the typical NHS route would have us believe but a lot of the stuff around the immunity theory suggests that more losses you have, the more likely you are to have more (if you read, 'is your body baby friendly?') Plus I have to have surgery each time and I worry about the damage to the uterine lining causing future problems each time.

I am now on 5th day of pred for this 5th cycle. I can test early next week. I hate that part!! If this ones fails, I plan to stick with it for cycle 6 but make an appointment for Jan in anticipation of that one failing. I will ask to go onto the SuperOvulation protocol.

@zarala its SOOOOO good to hear from you and your progress. A bit of fat is defo worth it!! Are you discharged from Mr S now? Please keep in touch xx

@zarala thanks for your message! And I echo @DaniMERL, it's so good to hear from you. I remember reading your story earlier on in this thread, I cannot tell you how great it is to see positive success story . It really gives hope!

@DaniMERL fingers crossed for your testing next week, do keep us posted and @Taxgirl1 too!

I had my first accupuncture last night which was nice to feel like I was doing something supportive to my body. Just need to have my follow up with Dr S next week then can hopefully start on this darn protocol . It feels like I have been waiting forever!!

Ah! Good luck @DaniMERL I hope it's your month!
Yes I was discharged at 16 weeks from dr s
I had scans every other week and i was anxious before every single one, convinced I was going to hear another "I'm sorry" but super grateful we got here. Just waiting now for this scan on Wednesday - already getting the jitters every time I think about it!
I don't know if the anxiety will ever go

But yes @Sunshineblonde1 I know what you mean- I used to read these positive stories and they would give me so much hope- so I am def going to keep checking in!
Glad the acupuncture was nice - I tried it for a bit too. I hope dr s sorts you out quickly!! It's such a crazy journey....

Also @DaniMERL I was told by my Chinese doctor that the more miscarriages you have the more likely you are to have them again as the body develops a habit- so she recommended I get treatment - she told me dr s was highly respected but she also wanted me to drink her herbal concoctions -
I probably would have done it but I don't have that much money !!!
I met so many women at dr s while we sat getting intralipids who had had 5 or 6 MCs- so it was really reassuring to see they were finally managing to stay pregnant!

Don't lose faith ladies! It will happen for you all soon !

@zarala thanks for posting and sharing your good news.

@DaniMERL - how are things? Have you got any good news to share?

@sunshineblonde1 have you got an appointment with Mr. S?

I don't appear to have ovulated this month. Despite all the obvious signs and a positive opk I have had no temperature surge. Feeling a little flat. Maybe I am just too old. Maybe the MMC has had a big impact on my system...?