ERA / EMMA / ALICE testing thread 5(!)

[VenusStarr]

Just setting up a new thread as we're coming to the end of thread 4.

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22

❤️

Can anyone on this thread advice please?

I have just got my EMMA/ ALICE results back.
Consultants secretary has written to say that I should have vaginal probiotics for 2 weeks as lactobacillus is low.
She has advised which ones to purchase.

I would be grateful for advice, and moreover to know - has anyone actually got pregnant following probiotics after multiple failures? I've had ten embryos transferred (1 early MC due to chromosomal abnormality, 2 biochemicals).

@birdbybird I would say it's best to take methylfolate either if you haven't tested for MTHFR or you have and you have the mutation. Although the CDC seem to think folic acid is best to prevent NTD. I get the usual recommended amount of folic acid (400mcg) in my vitamin B complex but take high amounts of methylfolate in addition. My understanding is that too much folic acid is bad for those with the mutation. But it comes down to whether there is raised homocysteine or not.

@thislittlebird I use balance activ, but there are other similar products out there. They reduce the pH to the optimum pH the vagina should be to encourage the growth of lactobacillus which need an acid environment rather than dysbiotic bacteria that cause BV that like high pHs.

@Gardenlady543

Thanks for your advice. I will continue to take probiotics, prebiotics, kefir etc with antibiotics but just space out by 3 hours.

What about the anti-fungal you suggested? When you I take it?

I wish I did not have to take antibiotics again. Does doxycycline decrease good bacteria as it affected ibs for months afterwards? I felt fine when taking metronidazole but I do take your point. The only thing I found is a few days after taking norethisterone which is high in lactose, the problems started again. It’s actually improved since I’ve stopped norethisterone and started canesbalance again.

@2021ivfagain when I take antibiotics I alternative daily, with vaginal probiotic one day and antifungal the next. Not sure about doxy, I know it is in a lot of USA FET protocols.

Oh @Janefx40 I feel quite emotional reading your results!
Really hope everything keeps lining up for you!
I love to hear your updates - they provide us with hope!

@Gardenlady543

Thank you so much for your advice. You have been so helpful. I’m waiting for my swab results. I take doxycycline as I’m allergic to penicillin but wish I could avoid them this time.

@Gardenlady543 do you know how 5mg methylfolate can be bought from Amazon yet 5mg folic acid requires a prescription?

@birdbybird good question, the main reason I can think of for why high dose folate is prescription only would be because it's mostly used in the treatment of anaemia due to folate deficiency. Now both b12 deficiency and folate deficiency cause the same type of anaemia, megaloblastic, where red blood cells are large. It's been a long time since I was involved in treating this but I think it's fairly common for both b12 and folate to both be low if one is. We are taught to always replace b12 first as replacing folate first can precipitate subacute combined degeneration of the spinal cord (this is so rare that I've seen it once in my entire career and I imagine that's one time more often than a lot of other medics).

So I suspect to stop people from self treating and ending up at risk, they'd rather a medical professional is involved in the process. So maybe check your b12 before starting anything if you haven't done so recently.

I guess the question is: is methylfolate safer than folic acid in this situation or is it just less regulated. I don't know the answer.

Lots of chat here today. I won't comment on the micro biome stuff as @Gardenlady543 has it covered and I also don't know anything!

@thislittlebird oooo Sunday. Not long. Excited for you.

@2021ivfagain thank you and hope your baseline went well. I insisted on them testing my progesterone every 4 days because my levels crashed last time (and this too actually but we caught it earlier because of the tests).

@warrior101 welcome. You've arrived at the right moment as today there's been a lot of chat about this on the thread. Hopefully you will find it all helpful xxx

@Janefx40 me and DH just saying how we’re at Guys right next to the lying in state queue lol. Hopefully it’s not near enough that people are in our way.

@Gardenlady543 thanks, I’ll order balance activ as well!

Hey @birdbybird I use amzn.eu/d/fC3WiI1 alongside general pregnancy multivitamins containing folic acid

@thislittlebird I thought about going to the Mall for a visit while I was waiting around in London to hear if I could travel in to CRP but I decided I'd exhaust myself with too much wandering about. There's a one way system so you have to walk a long way.

I would definitely leave extra time to get into London. Do you drive or get public transport?

@birdbybird there is a good write up on methylfolate here: rootfunctionalmedicine.com/folic-acid-vs-folate-whats-the-difference

Also I found the answer, methylfolate doesn't have the same risk of b12 deficiency:
"Another concern in people with high intakes of supplemental folic acid is the masking of vitamin B12 deficiency. This is not the case when supplementing with 5-methyl-THF. Since vitamin B12 is required for folate metabolism, vitamin B12
deficiency can cause a folate trap. High doses of folic acid can correct hematological signs of vitamin B deficiency and can delay the diagnosis of B12 deficiency, thus increasing the risk of developing neurological complications. In contrast, 5-methylTHF supplementation given to B12-deficient individuals cannot be utilized for methionine or folate cycles and cannot mask vitamin B12 deficiency."

doi.org/10.1515/jpm-2012-0256

@warrior101 sorry I missed your comment here but I replied on the thread you started.

Interested to get some thoughts. I’m on CD3 and my period blood has been thicker and darker than usual. No clotting. I was encouraged by my last 33 day cycle length and going straight into period without spotting. But my period is also a bit lighter than usual so I’m curious. While it’s thick, there isn’t much of it. Maybe old blood from previous 46 day cycle? I had a long one after my mock cycle/EndomeTRIO which was 21 days…

@MyEasterEggs I'm not too sure. Very curious. I don't think it could be blood from a previous cycle as that would be too old. Sometimes if my period is delayed tho I get old blood as tho it was originally shed when due but didn't quite manage to exit the premises! I think periods can vary - the only time I worried was when it was very very light but other than that I think it's usually nothing of concern. I'm no expert tho! X

Thanks @Janefx40. I’m not too concerned. Just wondered if anyone had experienced similar in the next cycle or two after EndomeTRIO cycle. Last cycle was pretty heavy for my but then it had been 46 days. Normally old blood would be like spotting wouldn’t it but had none of that before this cycle started. It’s definitely a period, not too light, just different. But then I’ve had abdominal massage, reflexology in last week or so…so maybe that’s shifted things hormonally. Maybe it’s a good thing! 😬🙃😅

So I’ve had an email from my clinic and my treatment plan was incorrect. I’m supposed to be on aspirin and clexane up to 36 weeks and on double the dose. They’ve offered me a follow up with my consultant so I can go over each aspect of my treatment in detail and I’ll hopefully get that second opinion from Dr Gorgy tomorrow 🤞🏻

@MyEasterEggs I would have thought a period would be back to normal after the next bleed post biopsy.

I'm pretty sure Gorgy isn't a fan of aspirin. I had been put on it in the past then prof Brosens told me:

Thromboses do not cause implantation failure (a long disregarded misconception) but COX-2 is important for implantation (aspirin irreversibly inhibits both COX-1 and COX-2). Hence, there is no indication for low dose aspirin. In pregnancy, low dose aspirin is effective in preventing late adverse obstetrical disorders, like preeclampsia.

Low molecular weight heparin has a number of actions, independent of its anticoagulant functions, that may potentially be useful. Heparin enhances the activity of heparin-binding growth factors, a number of which are mediators of implantation. There is no need to combine it with low dose aspirin.

He was happy for me to start heparin on the day of the transfer but Gorgy has recommended I take it from CD7.

You'll have to let us know how you get on with the appointment.

Best case scenario is it’s blood that’s oxidised a little or slightly higher than normal oestrogen levels. I suppose worst case is it’s fibroids, and I’ve had a couple of small ones in the past.

It’s not a scant period. So I think that’s a positive sign and would probably still be classed as normal judging by some of the articles I’ve read. Hopefully I’ll be reassured by Wednesday’s scan.

I’ve previously been on both aspirin and heparin from a positive test but the advice these days seems to be different. I’ll let you know what he suggests!

@MyEasterEggs
I just had to jump on and say that since my MMC in Feb 21 but more so lately my period blood has been thicker. Sorry for TMI. It doesn’t flow that great… and it’s slicker if that’s a way to describe it. I was worried… nothing flagged at my hyterscopy and biopsy like endometritis or anything. This period has been the worst. Barely any flow at all really but I’ve just started my 5th cycle of clomid. Starting to think I shouldn’t of bothered with it but giving it one last shot then having the rest of the year off and preparing for IVF in the new Year.

im also worried incase it’s estrogen levels since I do have an imbalance that started last July with low progesterone. It’s just a mystery to me still and I wish I could get to the bottom of it. Good Luck for today.

I'm still feeling sore and am limited physically, I'm pretty bored so I've resorted to replying to the threads on here with 0 responses.

My specialist asked if Dr Gorgy recommended a progesterone level and I said no but I just checked and he did, he said he likes it over 80, so I've just asked the clinic to pass on the message.

My autoinjector arrived yesterday and I've also got a blood hcg kit, I figured it may be useful to do a blood test in my next transfer cycle since my clinic doesn't do them and all I can do is stare at a urine test/ spend hours manipulating the image in apps to see if I can see anything there.

I also did some blood tests this week, my tsh is 0.66 and t4 is bang in the middle of the range at 17.3. I think tsh seems a bit low but the endocrinologist said to keep it in the bottom quartile of the normal range and said it tends to shoot up in Ivf pregnancies. Now I'm waiting on the repeat LAD result to see if I responded to the LIT.

How's everyone doing?

Hey @Gardenlady543 sorry to hear you’re bored and a bit sore.
Thanks for all the info about methylfolate. Are you in a related profession? Just wondering how you know all this :)
Do you find it strange the lack of availability of methylfolate at boots/holland and barret type stores? Why is it only available online?

I haven’t had a mthfr test yet. But yesterday to cover all bases I had the 5mg folic acid AND the 5mg methylfolate ordered from Amazon. Im worried that’s a bad idea if I do indeed have the mthfr mutation. I could bite the bullet and pay 160 quid for the mthfr test. :(

Also I got a positive on the opk today…first one after mc. I’m thinking to do the turkey baster deed tonight and see if this egg has any potential. Chances are low if my eggs are mostly chromosomally abnormal.

Sorry you’re feeling sore and tired and bored @Gardenlady543. Recovery is a hard slog. When are you expected to be fully well again?

Had my consultation with Dr Gorgy and feel clearer on some things. Rather than start prednisolone 5 days before FET I’m now starting that and clexane from day 7 of my cycle, and I’m holding off on aspirin until after a +ve test for the reasons you mentioned @Gardenlady543. Relates to a study by Lesley Regan I think he said.

Stumped on immune treatment though. Rather than have intralipids 5 days before FET he’s suggested two infusions. One on day 7 and another on day 14 of my cycle. That’s not possible for me, best I can manage is days 9 and 16, but I think that’s okay as I have an extra 24 hours on the progesterone and am delaying my transfer by a day anyway?

He also offered me LIT, suggesting we run DQ Alpha and LAD tests on Tuesday then have LIT if needed next again Tuesday, which works for me as I can have the intralipids those days too. But it’s a lot of hassle for my partner to attend and I don’t know if the results will even be back within 7 days so we may approach empirically. Sure we’ll figure out a way to make it work but I’m feeling frazzled as it also changes travel plans!

@MyEasterEggs I've been waiting patiently for your update :) your plan sounds similar to mine:

• Hydroxychloroquine 200mg twice a day to be started a month before Frozen Embryo Transfer
• Prednisolone 25mg and Clexane 40 mg from Day7 of HRT
• Intralipid between D7-D10 of HRT

Glad you could get clarity and an explanation on the aspirin.

That's interesting he wants 2 intralipids, he told me have one between CD7-CD10 and another if I get a positive test.

Whether your partner will need to be a donor for LIT will depends on your DQA1 result, I'm a complete match with my husband and Gorgy said he would need to be one of the donors on one of my LIT sessions, the rest will come from a donor pooled sample. My husband had to attend the clinic at around 8:30am, it was super quick they just took his blood and he left. The lab then processed the sample and I turned up in the afternoon to have the treatment, the partner doesn't need to be there for that bit.

@birdbybird I'm a doctor but nothing to do with fertility. I guess I never thought about the availability of methylfolate, but it is a bit strange that you can basically only source it from online. I think taking 10mg probably isn't wise. For £160 I would just get the test, I think in other circumstances it's probably not worth it but since you've been told to take a high dose you should check to make sure you're on something your body can process. And yes go for it with the sperm, I would. Do you have any 10/20ml syringes if so use that to get it in you as they are sterile. Note if you're doing this start sucking up a bit of air before putting the syringe while in the sperm as it's pretty high pressure to get it going.

@Gardenlady543 i have some some syringes I think.

I’m due to ovulate tomorrow. Then 5 days later I have an initial appointment with Dr Shehata who requires you to not be pregnant for the tests. So I’m wondering if I go ahead with the tests (because I’m unlikely to have implanted at 5dpo) or delay the tests. I’ll have to tell him I think but am annoyed it worked out this way timing wise.