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Immune/NK cells - pred thread 29

1000 replies

StillTrying10000 · 19/02/2022 20:14

Starting a new thread as the last was full.

OP posts:
Thread gallery
6
StillTrying10000 · 14/06/2022 16:53

@Leish01 sorry you’ve found yourself here but great you have a treatment plan. This podcast podcasts.apple.com/gb/podcast/the-fertility-method-connecting-you-with/id1613615538?i=1000555426953 explains about Dr S tests and why you don’t find much on Google about them. I would trust what they are saying though as so many women have success with his clinic. Good luck!

@Ralowi a lot of the drugs they will be able to give you at the clinic or you can ask for a prescription sent to you. I think there’s a £20 charge per item. He’s likely to want to book you in for Intralipids so you’ll need to go to the clinic for that anyway (depending where in your cycle you are) and you just do that with the nurses. However if you aren’t on Hydroxychloroquine yet they advise you take that for a few months before TTC from memory though so you may not be in for intralipids for a while. Good luck x

OP posts:
Ifitistobesaid · 14/06/2022 17:09

@VenusStarr sorry your superovulation cycle didn’t work. Wishing you luck with the FET. Which protocol will you be on?

My next steps are to take humira and assuming that brings my TNF alpha down I’ll start the FET prep. My clinic suggested a month of down regulation with zoladex as I have adenomyosis but I’m not sure yet if I’ll go ahead with that as it has a lot of side effects apparently. Everyone seems to think my adenomyosis is mild and isn’t causing my issues but what if it is actually the missing link? So confusing.

@StillTrying10000 so sorry you had a worrisome scan today. Keeping everything crossed for next week.

VenusStarr · 14/06/2022 17:42

This is my longest cycle ever bar pregnancies, hoping af arrives soon! Trying to have hope for our FET ❤️ Thank you all.

@Sezmarelda1 fingers crossed for you this cycle. I hope Dr Q can shed some light on what she thinks happened I'm your last miscarriage.

I've had a vitamin D top up today too, trying to remind myself to be present.

@Leish01 from what I can remember 200 is the cut off, did they not give you a copy of your results? What was your nk cell activation? What protocol are you on?

@StillTrying10000 I am so sorry you are in such a difficult place. Really good to hear the baby has a strong heartbeat but the blood sounds concerning and Dr Edge telling you to be prepared for miscarriage is so horrible. I'm so sorry today didn't bring positive news. I'm keeping everything crossed that baby catches up and the blood near the baby goes away. Sending you love and strength 💕

@Ralowi I think I'd try and get your results in person if you can, just so you can get your meds there and then. It obviously depends on what your results show, but I started hydroxychloroquine straight away and had intralipids at the same time. With hydroxy you can do a loading dose and ttc straight away if you want. I came away with a full pharmacy bag of meds! Funny to think I'm on even more now than I was then and thought that was a lot.

I'm glad you got through, I saw your other message saying you were struggling. I find the nurses really responsive to emails but sometimes with calling you just have to keep trying. I never leave a voicemail, just keep trying.

There's a couple of meds they don't have there - humira and gcsf so you get a prescription for those to source yourself.

@Ifitistobesaid I have adenomyosis too. My clinic doesn't really do down regulation (I'm with Create) so I talked to both Dr S and Mr Jan and they've put me on metformin to bring down the bulkiness of my uterus. No one seems to think it has an impact on my losses. They didn't seem to think for me down regulation would be required. Its so hard to know what to do for the best!
I hope the humira does it's job for you.
I'm starting estrogen on cd2, my clinic scans around cd9. Last time I transfered on cd19. I've done an era, so need 120 hours of progesterone - will be on lubion and cyclogest again. I've got gcsf added to my protocol now as well.

Lots of love to everyone 💕 xx

Ifitistobesaid · 14/06/2022 19:58

@VenusStarr oh I’m with Create too (in London). They suggested it but I think they just don’t know what to do with me. I might ask Dr S what he thinks. I’m on metformin now too.

VenusStarr · 14/06/2022 20:47

Interesting how your consultant suggested down regulation @Ifitistobesaid mine wasn't keen when i brought it up. I think of Dr S had suggested it this time, my ivf doctor might have been more open to it. He seems to be a bit lost with us. My thyroid is out of whack so he said to double my levothyroxine and then said only if Dr Shehata says that's OK! 😅 if our FET doesn't take or we lose again, I think down regulation is something I want to at least try. Will have to do more ivf though.

Leish01 · 14/06/2022 21:05

Thanks ladies for your responses!

@StillTrying10000 thank you I will listen to this on the train tomorrow morning.

@VenusStarr I requested my results through my GP as I have only had 2 phone consultations (an initial history convo and then to discuss blood tests) and haven’t received any other information. Im supposed to pick up my prescription which I think will give me more info but I haven’t had a chance. I’m going through the NHS so not sure if it’s different. They are starting me on Hydroxychloroquine 4-6 weeks pre conception and then something about a pessary. Not sure what NK activation is?! My total NK cell count is 418.7 10*6/L and I had seen the 200 number somewhere so I got really confused/worried that mine was double this?

VenusStarr · 14/06/2022 21:13

Hopefully you'll get a copy of your results, its hard not to worry but hopefully now you've been tested and got a plan, you can be treated and hopefully it will help you carry to term @Leish01 I think the pessary will be cyclogest (progesterone) to take after ovulation. I started on hydroxychloroquine, it's 2 tablets at lunchtime. They might suggest aspirin too as part of your plan. X

Leish01 · 14/06/2022 21:28

Thanks @VenusStarr I’m already on Asprin.

I think I’m still in shock and just trying to process it all.

Thank you for your responses, it’s nice to have someone talk it through with x

Ralowi · 15/06/2022 10:33

@VenusStarr thanks for clarifying, I think it probably is better to go face to face. Trying to remind myself the travel isn’t too bad in the grand scheme of things. I’d be a bit worried if I was only started on the hydroxy because if that alone doesn’t work it’s weeks and weeks to wait again (usually a miscarriage doesn’t resolve for
me until 10 or so weeks). I feel like I’d rather be put on everything even if some of it ends
up being unnecessary. Going to try and enjoy the next couple of months not being pregnant/stressed/miscarrying or on shed loads of medication!! X

Ralowi · 17/06/2022 07:34

Hi everyone, does anyone know if you need to have a negative pregnancy test prior to the testing with dr s? Ie if there is still too much pregnancy hormone in the system will it skew the results? We have an appointment on 6th July. I thought I had passed everything but had a scan at the epu yesterday and they are saying there is still a lot of thick lining at the top of my uterus (probably the progesterone) so a little worried I’ve only got under 3 weeks now. I’m booked in for surgery (AGAIN) in a weeks time. Also when I booked my appt with dr s they said I would get an email and I haven’t. Have tried to ring but can’t get through, if you aren’t number 1 in the queue you just get put to voicemail, I have left one but suppose I will keep trying x

VenusStarr · 17/06/2022 09:20

Hi @Ralowi I had similar when I first went to the clinic. I has my tests 4 weeks after a loss with medical management. I asked at booking and she said that would be OK. But for peace of mind, double check. It is annoying having to call. I usually try a few of the options!
I'm sorry it's looking like you haven't passed everything ❤️

@Leish01 did you collect your meds? I hope you got your protocol explained too.

I'm officially in my frozen embryo transfer cycle, period started yesterday and I start estrogen today. I feel OK about it now its finally here. I'm quite pleased as it's quite a good flow, I've been worrying about my lining.

Hope everyone is OK xx

ummidreams · 17/06/2022 11:55

Hi @Ralowi, I had my immune investigation done 10days after a 7w miscarriage (natural miscarriage), but had to wait for the hormone bloods ( LH, FSH, AMH...etc) to be done about another 2 weeks later so around the month mark after the miscarriage. That was to allow my hormone to settle after the loss.

ummidreams · 17/06/2022 11:58

@Ralowi sorry you have to go through the surgery again.
All the best

FfayeN · 17/06/2022 15:38

So I had my consultation today with the gynaecologist after my miscarriage in March. The baby had Trisomy 15, which is actually a bit of a relief in some senses. At least something was wrong. I'll never know about my 1st and 2nd, and she's testing me and DH for any signs it's us. Had my biopsy for the CERM trial Wednesday, and once those results are in we can finally start TTC again. I am nervous, but I think we're going to give it a go without any additional treatment once more (just progesterone and doxycycline if my biopsy is positive). The gyno seemed certain that my thyroid wasn't the issue here, but I guess time will tell 🤞🏼

HoldingOn2Hope · 17/06/2022 16:08

Hey @VenusStarr sorry I've not logged on for a while - busy with a stressful housebuild which isn't really helping with all the ttc too!
I'm sorry your SO cycle was a fail :( it's so hard isn't it. I'm with create too in Bham though and will give SO a couple of go's before we transfer the embryo we have stored at create. My thyroid also went haywire this last month and I knew it myself but gp wouldn't listen until I begged for a blood test. I can't believe how many similarities we have. I will log into my inbox and reply bk x

Hope everyone else is doing ok.
I'm sat having an intralipid so thought I'd log on while I can.
TNF came bk raised so I've been told to take humira 🙄 so much to take I can't keep up.
Also I've overstimulated so Dr Alex won't give me the trigger - I actually don't think I have as I have 5 dominant follicles which I've had previously and been given the trigger but she said she's not happy for me to trigger.

HoldingOn2Hope · 17/06/2022 16:22

@FfayeN I'm glad you have done clarity although nothing makes this any easier.
Xx

VenusStarr · 17/06/2022 17:09

@HoldingOn2Hope thank you. Just got your message and attachment - wow, its a lot!
I'm sorry they wouldn't let you trigger 😔 have they said avoid ttc, or are you just going to try anyway? I'm guessing if you're having intralipids its ok to try? What was your letrozole dose?

When can you take the humira? I was going through my protocol yesterday and have drawn out a chart to remind me what to take when, it's a lot. I'm cd2 today, so started estrogen xx

VenusStarr · 17/06/2022 17:11

I'm glad you have your baby's results back @FfayeN I hope your results won't take too long for the cerm trial. 🤞 for you without plan xx

FfayeN · 17/06/2022 23:45

Thanks ladies, we can but hope it'll all go well, sending the best for your cycle too this month @VenusStarr xx

ummidreams · 18/06/2022 06:02

Hi guys I'm just so confused of when to start my progesterone pessaries. I'm suppose to take them at the time of ovulation but I'm scared what if I take it early and it hinders the the actual ovulation. Like is the clear blue solid smiley (purple ones) enough to go on and go ahead taking the progesterone? Easy@home LH strip reading 1.07.

Any advice will be much appreciated xxx

ummidreams · 18/06/2022 06:07

The prednisolone I have a started yesterday and I was not expecting this early morning "buzz" (trouble sleeping) as mentioned by Dr s to kick in so quickly.

Sezmarelda1 · 18/06/2022 08:02

Has anyone here been on heparin? Prof Quenby is thinking of adding it to my treatment plan. I must admit I'm scared of having to inject myself, I've had heparin injections in hospital several times before and found them so painful I started refusing them. But it's something I am prepared to try if it could prevent another MC. I've watched a few YouTube videos of women giving themselves the heparin injections and they make it look so easy and painless!

VenusStarr · 18/06/2022 08:42

@FfayeN ❤️

@ummidreams I usually start progesterone at 2/3dpo. Did you have ovulation signs? When do you usually ovulate after a positive opk? If its normally the next day, I'd probably start 2 days after your clearblue positive.
Sorry you're feeling a bit wired after the pred, hopefully it settles.

@Sezmarelda1 I have used clexane and will be on fragmin this time (only use it in ivf). You do get some very interesting bruises - in my last pregnancy I had one shaped like a Christmas tree! I find self-injecting is OK, once you get over the initial weirdness of it. The anticipation is definitely worse than the act. I ice the area for a little bit first, hold the area firmly and take a deep breath and put it in, put the plunger down slowly. Do not rub after. Sometimes I'll put the cool pack on the area after if it was a bit stingy. You'll soon get into a good routine with it.

Ralowi · 20/06/2022 13:04

@ummidreams thank you, so was dr s able to do you a treatment plan without the bloods you had 2 weeks later or not? I’m wondering if I should delay my appt. I did allow 4 weeks but now the surgery is not until Thursday and the appointment is on 6th July. Presume this means the pregnancy hormones will still be there (although they are saying it is just the lining remaining). What you have said about side effect of the pred is my main worry as I struggle with sleep at the best of times! Usually when not ttc/pregnant I will rely on occasional sleeping tablet. I really hope it wears off a bit for u, let me know how you get on. I suppose at least if it makes you feel wired that might get you through the day. Sounds similar to how I feel if my thyroid goes too overactive- it’s a horrible feeling x

ummidreams · 21/06/2022 21:19

@Ralowi sorry, not sure why I get a notification for your message sooner. After my immune bloods I had to wait 2 weeks for a follow up appointment with Dr S for the results and got the plan. During the appointment he gave me the hormone bloods request form to be done on cycle day 1-3. ( I was mid cycle at that point) The hormone bloods didn't effect the plan.
As for the pred, last two nights haven't been too bad. Maybe it was an initial reaction, system seems to be slowly settling now.

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