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Immune/NK issues - aka Pred Thread no. 22!

(878 Posts)
HappyApple05 Mon 22-Oct-18 21:01:08

Helllooooo deariesflowers

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting ovulation to start on Pred protocol.

Miscarriage sad history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! shock Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

2. March 2018 - started bleeding in 6 weeks and miscarried naturally.

3. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

HappyApple05 Tue 23-Oct-18 09:56:28

Good Morning beauties,
Day 3 on Aspirin and Vits. Actually feeling good and positive!
All is well. Post if you are along the same journey, will be great to communicate and team up the positive spirit.

PositivePeach Tue 23-Oct-18 12:32:32

Hi HappyApple!

I'm not quite the same as you, but came to wish you good luck. Will be following your journey and sending as many positive, sticky baby vibes as I can.

I've just had miscarriage number 4, awaiting some of the standard tests to be repeated,as to my horror, the private consultant pointed out lots of errors (I had been told all standard tests were fine)

When the results are in from these I will be potentially seeking a referral to Dr S or Proff Q. May I ask did you self refer?

In the meantime, myself and DH are on a cocktail of vitamins. Zinc, folate, coenzyme q10, vit d, vit b, iron and selenium. I have also been advised to take baby aspirin from ovulation, also 400mg progesterone. Phew! Pick me up and I will rattle!

HappyApple05 Tue 23-Oct-18 13:12:34

Hello PositivePeach,

Very glad to hear from you hun. Sending plenty of baby dust to you and wishing you all the very best. Keep us posted.... This is just the start by the way as my midwife told me last time...

Sorry I have no idea about self referral. Went through my GP, it was a 4 month waiting time. Let's enjoy the cocktail of meds now.. ha ha...

HappyApple05 Tue 23-Oct-18 19:06:25

I'm feeling the hunger pangs while I just think of pred cake I was asked to take the injections every day until 16 weeks if i get a BFPconfused it will be worth it at the end bear

HappyApple05 Thu 25-Oct-18 10:09:55

Morning ladies,

Missed to tell you that I've been through another bit of horror...

I have severe morning sickness usually, even with the miscarriages I had. Due to acid reflux and severe heart burn going on constantly since Feb this year, I ended up in hospital with an urgent referral for Endoscopy, luckily it came back NORMAL. I had other issues such as difficulty swallowing (was told it's due to acid in stomach), so I was referred by my GP. Looking back, I think the main culprit is Jalapenos. Had plenty of those, trust me PLENNNNNTY due to my craving for hot and sour food. It was sooooo bad that I ended up in Endoscopy.

I'm on the mend now, feeling better and positive and here I'm posting, looking forward to catching up with you lovelies.

Have a nice day!!

Sunshineblonde1 Sun 18-Nov-18 19:02:04

Hi Ladies, mind if I join? I wasn't sure which thread was active as there seems to be a Pred Thread 21 running currently too so am posting in both smile

A bit about me
Age 36
2 x MC (1st one 6 weeks, last one was missed, D&C opted)
Self referred to Dr S and he diagnosed - borderline hypothyrodism, High NK cells, Very High NK cell activity, High TSH (4.88), AMH 3.2 ( sad ) 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 offered Dr Shehata's treatment plan 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

HappyApple05 Sun 18-Nov-18 20:04:51

Hi Sunshineblonde, welcome to the thread but so sorry you are here... A big hug... Reading the success stories from thread 21 gave me a lot of strength but it didn't seem to be active anymore. So started 22... I hope you feel well supported here.. I had the same concerns but decided to let lose and not think too much about the steroid. Will be starting on pred from December. Currently on Aspirin and vits. Sending you plenty of baby vibes.. Take care hun.

Sunshineblonde1 Sun 18-Nov-18 20:47:17

Awww thanks for the warm welcome @HappyApple05. Think we will be starting the Pred around the same time. I am hoping my TSH will be low enough come Mid Dec so I can start the Pred and protocol. I am currently on the Aspirin and Pregnacare Plus + vits he recommended. When I raised my concern with the Pred long term side effects to Lorna at Dr S's office she did mention there is an alternative to Pred and I could discuss that with him at my next appointment in mid Dec.I think I will just find out for education purposes! Good to know options at least.

Think I need to get an ovulation test kit, I never bothered in the past but seems to be important on Dr S's treatment to track O!

Keep us posted on your journey and how you find the Pred when you start, really keen to share the journey with people going through the same thing. Hopefully we can be of support to each other grin. Here's to a positive outcome with Dr S!

HappyApple05 Mon 19-Nov-18 19:51:50

Hi Sunshineblonde, I'm sure the meds will regulate your thyroid hormone. Not to worry, you'd be ready for steroids from the next appt. Keep positive. Of course, it's good to know the alternatives to pred.

Yeah, the idea of O.tester is new to me too shock I'm really glad to find people in the same boat (hug again)

Here's to the +ve outcome from Dr.S's treatment plan!!! Take care....

Sunshineblonde1 Mon 19-Nov-18 23:14:20

Thanks @HappyApple05! grin

Best of luck for starting the Pred in Dec..... not long now!! Let us know how you get on. Out of interest did you get referred to Dr S on the NHS?

My follow up with Dr S is Dec 13th so hopefully will follow in hot pursuit.

Fingers crossed 2019 will be a new start and a BFP that sticks!!!!

HappyApple05 Tue 20-Nov-18 09:26:42

Hi Sunshineblonde1,

Thank you :-) Exactly... not long to go.. Sure I will keep every bit of progress posted here. And would be excited to hear from you too.

Yes I got referred through NHS and it was 4 month waiting time. Are you on private appointments with Dr.S?

Sure, I can see some light in the end of the tunnel.. feeling positive.. 2019 is the year.. Cheers to it!

Sunshineblonde1 Wed 21-Nov-18 11:17:28

Here here!! Fingers crossed i will join you in starting on the protocol in Dec too smile

That's good to hear that you were able to see Dr S through the NHS. I took the private road. My GP and gyno unfortunately aren't really familiar with the NK cell theory and I didn't want to hang about waiting! And lucky I didn't as my AMH levels were found to be quite low so I don't really have the time to waste. I hope one day the NK cell testing/treatment will become more mainstream to save other women the heartache of multiple multiple loses.

HappyApple05 Wed 21-Nov-18 13:55:10

Sure Sunshineblonde1!! It will be great to start around the same time.. We'll be Pred buddies - ha ha :-)

I didn't know a thing re NK cells. Because I'm from Surrey and Dr.S works in our local hospital, it worked out a blessing and my GP did say he is one of the top gynae's in the country.

Yes.. I agree and appreciate if Nk cell testing could be included in the basic round of tests that every women with a miscarriage can access, defo will save lots of heart ache.

AF due tomorrow. Let's see if it turns out to be my CD1 as expected.
Neither tracked all these minute details before nor shared. Trying to come out of my little cocoon...

Good luck to us!

Sunshineblonde1 Wed 21-Nov-18 14:59:05

Oooo I don’t even know what CD1 means?? What is that? I’m such a novice! I just about know my O from my OPK 😛

Oh wow, seems like our menses are synced haha! I have just started spotting today so suspect AF will arrive shortly. My cycle lengths have been a bit out of whack since D+C in Aug.

Aww that is lucky. I’m in Kent, and they don’t have a clue about NK cells. Just the good old ‘try again’ method. I spent a lot of time researching and found Dr S to be the most consistently well reviewed. Hence, my eggs are in his basket 🤩

HappyApple05 Wed 21-Nov-18 22:07:34

CD refers to Cycle Day and you start fresh on the cycle on your period day 1 which is CD1. Tracking this would help have a rough idea on O day. I hope this makes sense. smile You won't believe me, i had to Google this before i posted initially shock So I'm not any better...

If NHS waiting time was longer, it would've opted private too. Oh wow, you did a good load of research... I think we are in the hands of the best people. And our bad times are in the pastgrin

Sunshineblonde1 Thu 06-Dec-18 23:18:27

Hey @HappyApple05 just checking in to see how you are getting on? Have you started the Pred protocol? How do you feel? I have my thyroid follow up results next week so fingers crossed can start next cycle.

HappyApple05 Fri 07-Dec-18 10:06:52

Hi Sunshineblonde1, Yes I have just started on the Pred Pro(PP).. Wishing you good luck with thyroid results.. things will be under control, don't worry and sending you lots of positive vibes flowers. Past 2 weeks have been too hectic for me, couldn't post. But it's constantly in my head....

Got the non flashey smiley smile on OPK 05 Dec and started on Pred 25 mg - utterly bitter tabs wink. I notice Gastritis type of symptoms.... All good so far.. It's more of 'Testing your patience' game. Isn't it?

Not fussing too much about it. Just letting it happen while the rest of my life carries on. Doing yoga and some breathing techniques these days and it helps me calm down and not bother too much about the situation. I would happily suggest it for you.

How are you getting on with Christmas??? We are all excited and hunting a holiday destination to celebrate. I know it's late, but this is how we always have been fgrin So looking forward to it.

fsmileWishing you a merry Christmas!!

Lots of baby vibessanta
HappyApple05

Sunshineblonde1 Sun 09-Dec-18 19:45:55

Hey @HappyApple05 lovely to hear from you flowers Great to hear you have started on the PP and all seems to be fairly uneventful symptom wise so far. I am getting the flashy face on the OPK. I have decided to track this month just so I can get a rough idea for when i start on the PP. Looking forward to seeing Mr S. on Thurs, have to go to Surrey for that appointment as he is fully booked in London! I am raring to start now, seems like ages since my D&C in late August - I am DEFINITELY ready to go now!!! I just want to be pregnant again.

Wow that's super about your Holiday plans, do you go abroad? We have just spent the weekend up in Lincoln and visited the Christmas Market. We were at a German Christmas Market last weekend too. I was born around Christmas so I am biased in saying it is most definitely my favourite time of year. fsmile

I love yoga too smile It has really helped me this year, and keeps my mind set and mood balanced. I learnt some breathing techniques too, but am guilty of not engaging them when I should!! Had my first accupuncture sesh last week - that was soooo relaxing, and have another sesh tomorrow. Feels good to be doing something holistic!

Sending back sack fulls of baby dust too santa fgrin

Smrahc48 Sun 30-Dec-18 22:22:24

Hi ladies. May I join? Just about to start cycle two of ttc with the pred under dr s.

Fingers crossed for us all x

Sunshineblonde1 Thu 03-Jan-19 19:23:30

Welcome @Smrahc48 and happy new year, may 2019 be OUR year for a positive success story with Dr S's treatment plan grin. How are you getting on with the Pred? I have yet to start, will likely start when I ovulate this month, I had to wait until my thyroid results were in the right place which they are now. What were you diagnosed with from Dr S's test? (if you don't mind me asking).

@HappyApple05 NNY! How are you doing on the PP?

Sunshineblonde1 Thu 03-Jan-19 19:24:31

P.S. Meant to read HNY! Not NNY! (oops)

Smrahc48 Thu 03-Jan-19 19:57:19

Hi! I found the pred not too bad last cycle, ten days of 25mg. I made sure I did my very best to avoid processed carbs and cut all salt out of my diet. I didn’t suffer insomnia, but I certainly felt less aches and pains. It played havoc with my skin though and I’m really spotty at the mo. Just got my static smiley on the cb ovulation test, so about to start up again in a couple of days.

I was told my thyroid was fine, but have high levels of NK cells.xx

Sunshineblonde1 Thu 03-Jan-19 20:52:10

@Smrahc48 that is interesting to note about the diet! I read somewhere that cutting caffeine, focus on plant based food, and eating bananas can help with the side effects. I didn't know about the processed carbs and salts. Euch, I am bracing myself for the acne! Have your cycles remained the same? Have you had any spotting? I am still dubious about taking the Pred, but I know it's what I have to try if I want to do everything I can to have a pregnancy stick! Did you go the private route to see Dr S or via NHS referral? xx

Smrahc48 Thu 03-Jan-19 21:11:05

@Sunshineblonde1 I’ve tried to tag you, but not sure if this is working as I’ve not posted here much. I was lucky enough to see him on the NHS. I also read about the bananas a they’re high in potassium and they help. I think the pred can cause you to retain lots of water and sodium magnifies this, so cutting it out and drinking loads of water may help counter act that.

I’ve not had any spotting and today is CD17 and I’m due to ov tomorrow as per my opks. This will be the same as last month. I read a LOT of things about cycles and pred and it’s scared me a bit. I even considered only taking 10mg from ov and upping it to 25mg if I get a bfp, but I know it’s against dr s’ theories. I also considered not taking until bfp, but I know the NK Cells don’t wait until bfp and act from ov/conception, so again, don’t really want to go against the professionals. I’ve read lots of women have taken from bfp and gone on to have successful pregnancies.

When are you going back to see him?x

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