ERA/EMMA/ALICE Testing Thread 3

[Janefx40]

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

Gosh @Janefx40 I'm sorry about the scan result, I take it they ruled out an ectopic which is good, but obviously it would have been good to see a thick lining.

@VenusStarr my husband asked about the symptoms of hypothyroidism and I told him and he said he is worried I have it. He said he has never seen me as fatigued as I have been in the last few weeks, I literally sit at my desk for work trying to stay awake and then lie on the sofa, he said over the weekend I didn't leave the sofa all weekend, usually I'm directing various projects. I thought it's the stress of everything, but maybe there is an issue.

Hi guys, I’ve been keeping an eye on the thread. Just wanted to say @Gardenlady543 when I saw a fertility dietician person she recommended I come off ubiquinol/coq10 as she said it was ‘amping me up’ - obviously not a technical term but I’d been on it for 3 egg collections and hadn’t been feeling great. I stopped it completely and it didn’t impact on the next 3 egg collections as I actually got better results. I agree it’s no harm to stay on until the repeat for comparison but like me you might feel better without taking it at all. I hope you get some clarity with the repeat test.

@Janefx40 I’m so sorry you’ve been having such a tough time. I hope you feel better soon, you are really in the wars at the minute.

@seven201 @VenusStarr hope you guys are doing ok x

How are you doing @Dochas12111 ? How many weeks are you now?

Xxx

@Janefx40 all ok here thanks, 20 weeks now and having anaomly scan next week.

Are you managing to get much rest this afternoon? Are you thinking you will take a bit of a break now to recover and prepare for your next transfer? It sounds like your body has been through a lot and then with covid on top. I know it’s hard to wait though.

@Gardenlady543 good news on the male hormone tests. If the TSH is a true read is it easily treatable or cause for concern that it could mean something more broadly could be happening?
Will GP cover the re-test now?
How much Q10 are you taking? I'm on 600mg a day at the mo.

@Janefx40 I'm so sad it couldn't have been a surprise miracle for you, well done for keeping a calm head and getting the information on what is going on to help with your future treatment. I hope you get some rest this afternoon. Being in and out of A&E and all the stress is so traumatic xxx

@StillTrying10000 if it's a true reading then I have gone from completely normal thyroid hormones to full blown hypothyroidism in a month :( it is treatable but it could take months. I don't think Coenzyme Q10 has raised it this high, it is really high. I take 2 x coenzyme Q10 200mg and 2 x ubiquinol 100mg a day.

My friend was put on levothyroxine with a TSH of 5, so 12.1 is really high :(

I really hope it's a lab error but I don't see how it could be this abnormal by error when my male hormones from the same vial were fine.

@Dochas12111 oh that's interesting you were told to stop, I hope everything is going well for you.

@Janefx40 I'm glad today has at least given some answers (not full answers I know). I'm glad you've had the day off to process and rest. How are you feeling now? You've been through the ringer!

@Gardenlady543 oh my goodness. That is weird!! I really hope it is a lab error. Although would be good to get some answers for your fatigue. I take levothyroxine (and ubiquinol), but my level was only 2.7 or something, so only taking for ttc. Good luck for the test on Wednesday.

@Dochas12111 oh wow! 20 weeks already. How has that happened?! Good luck at your scan.

@Dochas12111 amazing that you are already 20 weeks. Best of luck for the scan next week. Let us know how it goes.

I have to wait 2 weeks post Covid and then start Humira over 4 weeks and then re-test immunes so not doing anything other than that until May now. This miscarriage won't have delayed me but it's a shame it wasn't my miracle November baby.

@Gardenlady543 I guess we'll just have to see what the test says later this week. It does seem quite extreme.

I'm actually feeling really rough with the Covid today - super exhausted! Ugh. Looking forward to this month being over!

Got my bloods back from EPU but they couldn't test the blood from Friday which is annoying as that would be the one that would let us know if this is a new or old pregnancy. Yesterday Hcg was 29. They won't re-test.

@Janefx40 have they said if there's any other way they could possibly check?

I'm sorry @Janefx40 are they definite that it's not ectopic? So that's why they don't want to check your hcg again? I do think this was a new pregnancy. Are you still bleeding? Have you tested on a home test again?

Good to hear from you Dochas121 I can't tag you properly for some reason!

It does sound like it could be an issue with your thyroid. Mine used to fluctuate, so never too high but over 3, I'm on a low dose of levothyroxine. Hopefully you get some answers this week @Gardenlady543

How are you @StillTrying10000? X

@SUMMERTIME02 the lab threw Friday's bloods away after 48 hours which is annoying because the A&E doctor asked the team to see me on the Saturday which would have been fine - but they deferred until Monday.

They don't think it's ectopic and they're satisfied the bloods are low enough to be safe. I have to do a home test in 10 days and call them if it's positive. Home tests are getting gradually fainter but still positive at this point.

My current challenge is I can't source Humira!

I'm so sorry you're going through this @Janefx40 I hope it does resolve quickly for you.

I've not had to use Humira, I know it's expensive. Are you on any Facebook groups, might be worth posting to see where people have got it from. I'm on UK storms and rainbows (a lot of women under Dr S on there) or there is a UK reproductive immunology one but that's not very active. The admin around all of this is crazy!
How are you feeling now with covid? X

Thanks @VenusStarr yes I'm on that page too. Have posted and a few people have responded although most people seem to be paying over the odds!

I think I'm a bit better now with the Covid. Yesterday I was totally shattered but today is ok.

How are you?

Cross posted @Janefx40! 🤦🏻‍♀️

I thought it was about £400 per injection which is insane. I hope you can find it somewhere reasonably priced. Do the clinic not have it) although I'd imagine their cost would be 🤑)

I'm glad you're feeling a bit better.

I'm OK thank you. Someone posted in the other FB group that they had a loss similar to mine and that Dr S recommended gcsf for them, which is what I'm expecting when we see him. But I feel pretty comfortable with trying the sitagliptin and the same protocol on my last embryo of that batch and crossing everything that it'll be OK. Trying not to let it get on top of me, if I think about it too much, it's overwhelming xx

@Janefx40 sorry you have this new admin challenge to face. Nightmare! I'm glad the doctors aren't worried about ectopic at least.

I've just picked up my cd2 blood tests and am now having a panic that my oestradiol is too low and that maybe I'm approaching menopause! I've only done a tiny bit of googling so I may be getting ahead of myself.

@seven201 you're not in the menopause! Look at your FSH! It's beautiful and a sign that you're not aging out of fertility just yet.

One thing I've learnt through all this is not to freak out at one strange result. Hormones do shoot up and down sometimes. It is hopefully just an anomaly. When can you speak to someone?

@VenusStarr yes that is me posting. Mr Shehata did recommend a chemist and they have it for £200 per injection but it's near his clinic. I will probably just have to go there.

@seven201 I agree with @Janefx40 your lh and fsh are good :) try not to panic.

Ah OK @Janefx40 hopefully it's not too much of a faff to get there x

Happy international women's day you strong, powerful superstars! Just keeping going when many will have admitted defeat long ago shows how amazing you all are .

Oh phew. Thank you @Janefx40 and @VenusStarr that is just what I needed to hear! It was a randomly long cycle, so maybe that has skewed it a bit. Wish I'd don't that medichecks one too now

@Janefx40 oh that is annoying. How long is the journey? Can you send DH? In the past I've had issues getting hold of all my drugs - it really does feel massively stressful!

@Janefx40 so sorry to hear they threw away your bloods. Unbelievable. I think the break until transfer while you take Humeria is good. I had covid before an ivf round and I’d had to get bloods taken before the round and my crp (measure of inflammation) was off the charts - a month later it was back to normal so hopefully any post covid inflammation will be gone by then too.

I hope you are doing ok x

@VenusStarr it’s so tough. Good idea to just focus on your plan and not overthink it.

@VenusStarr I somehow missed your full post earlier (I was too busy thinking I was menopausal - have got over that now!). I think sometimes you just need to go with you gut and that is enough. You've made the decision, so just let yourself be content and go with it - easier said than done!

@VenusStarr sorry not to have responded directly to your post earlier. What is GCSF?

@Janefx40 you could arrange a blood hcg through medichecks?

@seven201 I don't know why the lab have presented the result like that, day 3 oestradiol can be much lower than 98 and still be in the normal range.

I just had my blood taken for the repeat thyroid test, I'm really hoping the result is back before the weekend so I know where I stand. Still feeling exhausted, if it is caused by hypothyroidism then the symptoms can take months to resolve, really don't need this diagnosis right now :(