Immune/NK issues - aka Pred Thread no.20!

[harrietm87]

Hi all, thought I'd get the ball rolling on the new thread.

Welcome all with immune/natural killer cell issues.

It's been a while since a new thread so thought it might be helpful if we all added our stats:

I'm harriet, age 30, TTC#1.
3 mcs (2 at 5 weeks, 1 mmc at 9 weeks).
Hypothyroid and high NK cells.
Cycle 2 on pred!

Same as Luna justla- the fact that you're pregnant is really fantastic news and I think your reaction isn't completely normal for all that we have been through. Glad you can share your storey with us and hopefully when we all get there too- you'll ben comforting us and heavily pregnant x

Aw great, thx :)
Glad your acupuncture is working. The lady I went to see gave me to nutrition advice but didn't really tell me about what her acupuncture would help with, plus her equipment looked like it had seen better days, so I retreated lol.

Sorry Luna, I didn't answer your question. As far as I know, you get access to more frequent scans once you've had 3 or more MC's. I went to gp with a few pains and he booked me straight in, so I'm enjoying SOMETHING for free at least 😂
I'm sure the midwife told me a while back that once considered high risk, you are entiltled to a scan every 2 weeks on NHS, but haven't checked it out yet

Thanks - good to know! I assume by the time I'm preg and on all the protocol I'll be considered 'high risk' even tho I only had 2 miscarriages... although I won't see midwife to book in until I see a heartbeat, I've made and cancelled enough appointments :(

These are good points, I'm wondering how nhs will react if/when I fall pregnant and am on this 'plan', hopefully it means Consultant monitoring through pregnancy and labour, Dr S generally signs off at 20 weeks I think?
I heard back from the clinic again this morning. My thyroid has come back on the high side, so he's prescribed Thyroxine. Annoyingly I'm on holiday until next weekend, so won't be able to start the medication for at least another week. I'm so impatient!! He wants my level to half to be ideal for pregnancy. I hope he won't suggest holding off trying again this month! Only received a brief email as I'm out signal much of the time up here.

Sorry for your losses Tee, I hope you have a successful journey through Dr Shehata protocol. This forum was a life saver for me when ttc DD, I hope you find invaluable experience and support form these wonderful ladies.

Rosa, I know how you feel. I made the decision that I could go through one more miscarriage but beyond that is my end point. We are SO lucky to have our little miracles, they are more than enough.

Just I have a scan on Monday too... NHS, I had loads with DD, my view was that it reassured me, didn't risk the pregnancy or change the outcome so I didn't really matter if Mr Shehata recommended them. This pregnancy I don't really want all the scans Mr Shehata recommends, just one Monday and one at 12 weeks. It's not going to change the outcome either way so I don't really see the point.

The NHS were fairly mixed in their opinion of Mr Shehata and his treatment plan. I was consultant led and she was pretty against the use of steroids, but the midwives were all quite open to hearing more etc.
This time round, I've managed to get my steroids from my gp!

Hi all, gosh I've missed loads haven't I?! I didn't even get notifications for most of these!

All good thanks and feeling for you all. Welcome newbies and retuning posters, sorry to hear about your losses along the way. This is a really super thread and I'm looking forward to seeing some BFPs and 12 week scan worry respite moments!

Harriet- thanks for the info on delayed O days. Still getting negative OPKs which is good because now I don't want it to happen early cos I should get to see DP on Thurs. Going to try to turn his business trip into a bit of a holiday. Your message about 3dpo being too early to symptom spot made me laugh; we all know it's inevitable anyway! Also, was interested in the debate about saving up sperm vs regular ejaculation aiding regeneration and creating healthy sperm...I don't buy the former, unless the guys sperm count is low.

Starshine and Rosa, sorry to hear your fears about being too old. I agree with Harriet that neither of you are. NHS-funded IVF is available up until 42 (which is presumably a conservative cutoff). It was raised from 39 a few years ago and they would def not be wasting money on it if they thought 42 was too old. You don't have to make any decisions right now about stopping, but sometimes I do also wonder whether there's an easier way to approach this all. I have wondered if going back to the old fashioned method sex a few times every week would stop the monthly OPK faffing and the relentless dpo counting. But then I suppose it could take longer to get pregnant.

JustLa, I feel for you. if you get the scan, the midwives will be able to interpret it anyway, it doesn't matter that Dr S can't comment. Don't worry about sharing pregnancy updates; it's what we are all here for. We've all been there and been disappointed and it's important that you have people to bounce off when things are good but you can't quite trust in that yet. I am dying to be pregnant again but I am also terrified that I will be a nervous wreck for nine months...it is not easy for you!

hi poppy turning your visit into a holiday sounds lovely! Where is it? And is your ovulation late or do you just normally have long cycles?

Good luck with the scans today seeking and justla.

Quick question for seeking and rosa and everyone else - have you been advised to take progesterone from bfp or earlier? I'm supposed to take it from bfp, but wondering if might be beneficial to start earlier as I'm pretty sure I've got low progesterone on top of everything else. Actually surprised mr S didn't test for that. Presumably he'll check yours starshine?

tee I so sympathise with the impatience! What were your levels on the thyroid test? I've had hypothyroidism since I was 16 - think it's the root of all my issues. Great they've identified it for you.

Thanks Harriet!! Just waiting now ....

I was advised to take it from bfp but this cycle I took from ovulation to 10dpo to let it come down enough to bring on af, if it was gonna happen. But it didn't and got a bfp at 16dpo, so started again then.

Hi Harriet,

It's in subsaharan Africa so pretty exciting! Should find out about visas shortly. Weirdly, my ovulation usually happens on the same day every month, so Every 30-31 days, but AF is strange; usually happens every 35 days and some months not at all yet I still ovulate! My endocrinologist is aware and doesn't think it's a problem. So although my last AF was a bit early, it's hard to say whether it will affect my O day. Have you had a test for low progesterone? Taking meds from before BFP sounds right. My endo advised me to take Pred all the time cos he doesn't think that would have time to kick in if I wait for my BFP. I suppose progesterone may be faster to get working.

Hope you're all ok. How are you Starshine? Fingers crossed Seeking and JustLa for your scans today xx

Ah poppy so exciting! Good luck with the visa! My DH is in Asia atm - id have loved to go but have no annual leave left.

Nope haven't had progesterone tested but might ask my GP to do it. My plan with Mr S is to take pred from ovulation for 10 days and the progesterone from bfp, but I think I'm going to copy seeking and take progesterone for the next 5 days and see what happens. Still have a big downer on this cycle though for no real reason!

seeking that's quite late for a bfp! Did you have bfns earlier or did you just wait to test?

What do you mean Harriet? You'll take the pesseries before BFP? I'm on the same protocol as you - but if there's a sneaky tip you have, I'd love to know more!!?

Yep luna - that's what seeking said she did. I reckon it can't hurt?? I know other protocols suggest you take progesterone from ovulation. When I asked Mr S about he said the evidence was mixed re progesterone (it's a bit chicken and egg - prog levels are low with early mcs, but could be an effect of the loss rather than the cause) and not to worry about it, but I also know progesterone issues are linked to hypothyroidism (which I have) so wouldn't be surprised if I could do with a bit of a boost.

Aha! I missed Seeking's tip on that!!

Ok - I'll do it too 😝

When should I start? I take steroid on day 14...

Hi all- so FSH had come back as 15- raised and now feel really down! Seeing mr s on Thursday so will see what he says - self diagnosing isn't good I know! But I do know that's on the higher side. I have ordered a home AMH test as well- as mr s hasn't mentioned that- my acupuncturist recommended it and have kind of had my head in the sand about it, but this week she said 'it is expensive -£79' I thought - if it was done at the clinic would prob have an extra zero on the end 😂.

Yes I took progesterone day after ovulation on mr s guidance purely due to ovulation- however it has made my mood swings much worse and I have felt very depressed. This month I am not taking it as going to have progesterone levels checked, so will see how my moods are. I would recommend having prog levels first as was a miffed mr s didn't do this before hand.

What do you think on the FSH ladies? Should i panick? Anyone any experience?

Hi all,

Thanks for the good luck- it seemed to work. Next check point cleared (phew) NHS nurse who checked me was fab!!! She looked at my ovaries and told me left was tucked behind womb a little so could explain a dull ache I always get. Checked a cyst on my other ovary, looked around for ages talking me through everything. Bravo NHS, bravo!
She told me to book in for another scan to keep checking, and the assistant was so happy for me- they all crossed their fingers. Was so sweet of them.
It's just 1 more step along a very long road but it's a good step. Baby measuring a little bigger than it should be which was great too. Anything can happen though, we still have the chromosomal hurdle to leap, so taking it day by day.

Harriet and Luna, on the cyclogest topic, I took mine from BFP. I think it would be an idea to talk to Mr S first as it could mess with cycles and will probably mess with emotions- if you're feeling a little delicate anyway it could be extra stress? Worth seeing if you need it first maybe?

Poppy, I can't sugar coat it... if you're anything like me you'll be a mess! It's an interesting emotional rollercoaster, can't wait until you all get here so I can reassure you 'that's normal... yes that's normal too... no you're not being crazy' lol.
Africa!!! That's so amazing, I wanted to go to Zanzibar this year but can't remember whether there was zika or malaria or something that put me off a little. Have you covered all that stuff with GP? Am sure they have TTC solutions, I didn't look into it though.

Star, I'm sorry you're not worrying about your results. It's easier said than done, to wait until you see Mr S, but he will give you the low down which as you said, is sooo much better than self diagnosis. I don't have enough experience with FSH. I'm looking at my results pre pregnancy and I was at 7.2. Normal shows as 3.5-12.5 on my sheet so 15 doesn't seem too much higher, maybe classed as borderline.

Seeking, I understand, I think 2nd time around must feel a little more relaxed than 1st in our situation. I figure, I'm on blood thinners so best for me to know asap if anything has gone wrong as I'm sure I'll need to come off them. How was the scan?

Hope everyone else is ok xx

Star, I made a silly typo, I'm sorry you 'are' worrying about your results (not I'm sorry you're not! Doh) x

Great that scan was a success!! Amazing news and so sweet of the team rallying around you and making you feel special!

I'm afraid I have no idea what FSH is Star... I'm really new to all these terms and forum acronyms in general!

Maybe you're right JustLa...I'll wait for this first ever cycle of trying to happen then re-evaluate... do they make you moodier? Damn...

Hi all,

Star, sorry to hear that, it's does sound higher than ideal, but still at the low end of what is considered high. It doesn't sound like panic stations; lots of women get pregnant with FSH higher than that. Was it day 3 of your cycle that you tested? That's supposed to be the correct point; if not, reference ranges for mid cycle go as high as 21. This is based on the tests I have had done. Mine has thankfully always come out pretty low. There are ways to get FSH down though, vitamins and diet as I recall. So it's not the end of the world at all. AMH is widely understood to be a better measurement anyway and as I recall, more important when it comes to the balance of the two hormones.

JustLa, this is great! Congrats! They sound like a lovely team who know exactly how to deal with women like us who are used to having bad news at such times. Also can't wait to be a few weeks behind you seeking reassurance for my twinges! There's no Zika where we are going and the malaria risk is manageable; can't take the pills when trying to conceive but we have been travelling a lot in Africa lately without them and have been ok, being very careful with sprays, etc. I am rarely bitten in that part of the world. Zanzibar is on my list too! DP loves it and is often threatening to take me there. Yes please!

Harriet, it will bis very interesting to see how progesterone plays in. I may have mentioned that my endo recently asked me to get mine measured, almost as an after thought, because I told him my luteal phase has shortened slightly since my second MC. Wonder why they don't look into it earlier?

Thanks Luna :)

I had to look FSH up too! It's Follicle Stim. hormone. Mr S tested mine.
I think like any hormone, they make you more emo, I doubled mine when I had a little spotting, then took it back to 1 per day and my mood got really low a couple of days after, may have been related.

I found coming off the pred after 10 days affected me so I may just be sensitive lol

Poppy that's great news re- Africa! I hope you manage to pull it all together with the visas, ovulation, etc. African inspired baby names could be on the cards for you?? 💫
Xx

@harrietm87 my TSH was 4.24. Just got an email today from the office confirming it's just high for pregnancy, not a concern generally. No talk of delaying trying, so think I'll just kick in with our August plans (first month on complex programme!). I'm on holiday in Scotland, and my mum bless her has sent me some of her Thyroxine to tie me over until I can pick up my prescription when I get home. Are you on Thyroxine? Do you know what your levels are? What are your feelings about trying with a level of 4.24? So many conflicting answers from Dr Google! x

Harriet I was on holiday so couldn't test until I got home... plus I'd had some brown discharge so was convinced af was coming*!
*
Glad you had good news with your scan *
Just* another milestone ticked off the list.

I didn't have such good news... I'm in limbo. My dates would put me at 6 weeks but the embryo was measuring at about 5+2/5+3. I'm sure of my dates. No heartbeat. So have to go back on Tuesday. I've been here before and I'm pretty sure how this will pan out. But time will tell... right now I'm feeling very meh!

Seeking, I'm really sorry to hear you had such discouraging news. I had exactly the same thing in January at as many weeks. The gynae did say the machines can be a mm or so out and said it's not always bad news although it was in my case. Heartbeat at 6 weeks would be unusual too, right?

Lots of love to you. I hope you have some support at home this eve?

Seeking, I'm so sorry you're having a worrying time. I remember reading quite a few stories with decent outcomes, in your situation. And of course if it's a little behind, the HB won't start until 6 weeks anyway.
Limbo- we all know thaf feeling and my heart goes out to you, knowing what you're going through. You're going back Tuesday, as in a week from now? As you said, time will tell and I can't suggest you don't expect the worst as it's all I ever do at the moment, but 4-5 days off is could be totally fine at this stage. Hope you are able to rest and get through each day at a time until Tuesday comes.

xxx

Oh no seeking I'm so sorry. But it's not definite yet. They are so teeny tiny at this stage and they can catch up. That's very early to see a heart beat and good that there was an embryo. The limbo is just the worst though. Would you do hcg bloods or would you rather wait for the scan?

Sorry that you're feeling down too starshine. I don't know much about it, but doesn't high fsh mean you're more likely to release more eggs, hence twins being more common in older mothers? It's great that you've been tested and have an appointment. You will get a plan and all will be well.

tee that's not too bad for TSH- it's in the normal range and I imagine there are loads of women who conceive easily and have no problems on that level. Where you have pre-existing hypothyroidism they like your TSH to be under 2 (mine was 1.74 last I checked), but I don't think that would apply to you - Mr S will be able to advise. You also really need to know your T4 as well in order to get the full picture. He will probs start you off on 25mcg thyroxine daily (I'm on 150mcg for comparison), but definitely don't hold off ttc - go for it!